Today, I'm a healthy 17 year-old, but blood-related cancers still continue to strike all ages and leukemia remains the leading disease-killer among children. 

Without funding for new treatments and cures, these cancers will continue to impact our lives.

Email: manoftheyear@chadharthan.com

MY BATTLE WITH LEUKEMIA (from website created in December 1999)

September 7^th, 1999 - DIAGNOSIS
I (Chuck) had my first golf lesson in the morning. My swing was pathetic, but with practice and continued lessons (at $100 an hour) I would be able to avoid complete humiliation. Lisa had called the doctor in the morning because Chad had a rash on his chest. He also was bruising very easily and had swollen lymphnodes. An appointment was scheduled at 3pm.

Lisa and I arrived at the doctor's office and were quickly led to an examining room. Our doctor looked over Chad and began to ask us a series of questions. The most disturbing question was, "Do you have a history of cancer in your families?" After a few minutes, our doctor mentioned the word leukemia. We were immediately sent to the laboratory for blood work.

We sat in the blood lab lobby waiting to be seen. We were confused, shocked, and scared. Once the blood was taken, we were told that our doctor would call us with the results in an hour or so. We remained optimistic and hoped that the blood work would reveal an infection of some sort and not leukemia.

At about 6pm, our doctor called and directed us to pack enough clothes for two or three days. We would have to enter the hospital for further testing. We arrived at the hospital about 7pm, checked in, and as of today [October 7^th], have not left. Our pediatric oncologist, who has over twenty years of experience, knew within minutes after we checked in that Chad had leukemia. He would have to begin chemotherapy immediately.

Chad's age places him in a high-risk category. Leukemia strikes about 30,000 people a year, of which 2,700 are children. The number of infants (less than 1 year old) who are afflicted with leukemia is about 60 a year. Needless to say, leukemia is very rare in infants, which is the reason we are in a high-risk category. The chance of survival about 40%. That morning I was worried about my golf swing; that night I was worried about my son's life. Things can change fast!!

September 8^th to October 6^th - THE FIRST MONTH
The treatment began with induction, a 55-day period of intense chemotherapy. The goal of the treatment is kill all leukemia cells and prevent them from coming back in the future. The chemotherapy not only kills the bad cells, called leukemia cells or blasts, but also destroys good cells. This puts Chad at risk for serious, potentially fatal, infection since his good white blood cells are also destroyed. Understanding the Complete Blood Count (CBC) is very important, so please click here for an explanation of the blood chemistry. Chad's blood is the report card of his progress and we receive these reports everyday.

Because Chad will receive so many different drugs, frequent blood transfusions and multiple antibiotics, a Hickman catheter was inserted into his chest. This will avoid needle insertion each time he needs an injection of fluids. He received this catheter on September 8^th and will likely keep it for the next couple of years.

The first days of treatment were uneventful. Chad's behavior did not change much. He continued to play with his toys, watch his "So Smart" videos and eat his baby foods. The first bag of chemotherapy was hung (on the IV poles next to his bed) on September 9^th. The chemical is called Daunomycin (or Daunorubicin) an intimidating orange liquid that looks like a bag of gasoline. A urinary catheter was temporarily installed because his urine would burn his (and anyone else's) skin. We now have to change Chad's diapers using protective latex gloves because his urine and stool are toxic because of the chemo.

On the evening of September 18^th we had a major scare. Chad had been acting dazed and aloof all afternoon. At about 7pm he had a seizure. The pediatric intensive care physician and staff quickly came to our room. Several drugs were administered to stop the seizure and eventually the seizure ended. A CT scan on Chad's brain showed no problems. Chad was rushed to the intensive care unit so that he could be closely monitored. In addition to his Hickman catheter, IV lines into each leg, a tube through his nose to capture stomach fluids and a catheter into his bladder were inserted. He had over ten lines/wires connected to his body. We spent the next few days in intensive care.

A low level of sodium caused the seizure. The doctors also discovered a bacterial infection called pseudomonas, which can cause multiple organ failure among other things. Fortunately we had a sensitive strain and therefore could be treated with antibiotics. Chad's level of white blood cells was at 100. Since the normal range is about 5,000 to 10,000, Chad's ability to fight off any bacterial or fungal infection was virtually non-existent. This gave the pseudomonas an opportunity to invade Chad's body.

The next few weeks were tough because of Chad's inability to fight off infection. He remained neutropenic (i.e. low white blood cells) for a couple of weeks, which made him feel ill. Finally on October 5, his white blood cell count began to recover eventually reaching over 12,000. A bone marrow aspiration revealed platelets and red blood cells, suggesting Chad was on his way to remission. We still have a few more weeks in the Induction phase of treatment, but Chad's seems to be responding well to the treatment. He has lost most of his hair, but still has some remaining.

October 7^th, 1999
Chad appears to be doing better. He has lost a lot of his excess water weight (about 2 pounds or 10% of his body mass). He has overcome a cold that was preventing him from breathing properly. Unfortunately Chad gave his cold to me, so I had to spend my first night since September 7^th away from the hospital. Lisa and I gave up our apartment and will live with my parents for the next several months. Chad will need special attention when he is away from the hospital, so Lisa and I decided living with family would provide the support needed, especially since I will be travelling extensively for work. Pictures will be added soon to the web page.

October 8^th, 1999
We moved again to another room. This is our 10^th room in four weeks. We have had plumbing problems in two rooms, ventilation issues in a couple of rooms, a trip to a pediatric intensive care unit and time in the intermediate intensive care unit.

The pseudomonas, which can have the same effect on the body as gangrene, has killed some of Chad's skin near his Hickman catheter. There is a hole the size of a dime that is about 1/3 inch deep, which will heal but leave a noticeable scar. Someday Chad will brag to his buddies about this battle scar.  

October 9^th, 1999
The doctor was very optimistic about Chad's recovery and even mentioned the word "remission." Remission basically means that virtually all the leukemia cells are gone and he has started to make good cells (i.e. white blood cells, red blood cells and platelets). We still have two more phases to go in the Induction stage, but we could be home for a week at the end of October.

Chad was feeling much better today. His white blood count was about 9000 and he started to make some platelets. For the past four weeks, transfusions were necessary to keep his platelet count at a reasonable level. He was lighting up the room with his smile, bouncing up and down on the bed and laughing loudly. He loves it when his Grandmas, Grandpas, Uncle Erik and especially his Aunt Kim visit. Almost everyone stopped by today.

We are still having problems getting Chad to eat again. Since his seizure we have not been allowed to give him any foods or fluids, including breast milk, until yesterday. Because he is getting all his nutrients through his IV, he probably does not have an appetite and maybe has forgotten how to breast-feed and eat his baby food. For dinner Chad did eat a healthy portion of sweet potatoes, but threw up some of them later in the night. Eventually he will go back to eating like a Harthan (i.e. often and unparticular).

October 10^th and 11^th, 1999 
These days are good. Other than the poor eating and occasional throwing-up, Chad is doing great. He has not had a fever for a couple of days, which makes him feel more comfortable. He is technically in remission, but still has a long way to go before we say that he is "cured." A cure is defined as no significant sign of leukemia four years after treatment ends. Since we will not end treatment for at least two years, we can not say Chad is cured for at least another six years. Of course if he relapses (the leukemia comes back), everything changes. Depending on the timing of a relapse, we could restart the chemotherapy using a modified protocol or attempt a bone marrow transplant. About 55% of babies with leukemia will relapse. The probability of relapsing four years after treatment ends is very low. I hope this is the last time I will have to mention the word relapse.

We have resumed the chemotherapy with a drug called Methotrexate. Chad will receive this drug through his IV for 24 hours. We do not expect any major problems during the administration of methotrexate. This is the second step/phase of the first stage of chemotherapy, which again is called Induction. After Induction, we will have several more stages. The next stage, called Re-induction, will probably begin sometime in November and will last about a month.

October 12^th, 1999 
Chad continues to be active and alert, but still does not want to willingly eat or drink. The methotrexate has probably caused some nausea and loss of appetite. He receives an IV liquid called TPN, which contains all the nutrients and fats he needs. The nurses called TPN by its medical name, steak and potatoes in a bag. This also prevents Chad from having an appetite. He has been shivering lately even though the room is not that cold. Our doctor has ordered to two tests, an EEG and Upper GI. The EEG will check for any abnormalities in his brain that may be causing his shivering, while the Upper GI will identify any sores and/or inflammation that may be attributing to his lack of appetite. We should have the results of these tests sometime this week.

We have had many hits on our Web site over the past few days. Please send us an email if you would like to see anything else added to the Web site. We will add pictures to the Web Page by the end of the week.

 

October 13^th, 1999
Our days remain fairly smooth and unexciting, which is the way we like it. Chad had his EEG in the morning, but we will not get the results until Friday. The doctor did reiterate that he does not think anything is abnormal with his brain, however he wants to rule this out as a reason for Chad's shivering and eating issues. We did manage to get Chad to eat some sweet potatoes, but he still does not want to breast feed or drink anything. The Upper GI has been canceled because the process calls for Chad to drink a large amount of barium. Since he refuses to take anything orally and he has been throwing up anything we do get down into his stomach, the test had to be canceled. Instead the doctors will look down his throat with a camera while he is sedated. Chad is scheduled for his spinal tap tomorrow. Because he will be sedated during the spinal tap, this is good opportunity to check his throat with the camera.

The spinal tap has been performed every week since we have been admitted into the hospital. The leukemia cells are typically in the blood but could migrate into the spinal cord and brain. To prevent any leukemia cells from surviving if they do enter the spinal cord, a chemotheraputic drug is injected into the spine.

We will also have another barrow marrow aspiration. Examining what cells the bone marrow is producing gives us the best way to access Chad's progress. To extract the bone marrow, the doctors sedate Chad and then stick a needle in his pelvic bone. We will know the results of both the bone marrow aspiration and throat examination tomorrow.

We had someone ask a few questions that many of you may also be asking:  What's his "routine?"
We do have some consistency in the hospital. 1) The doctor's come in at about 8:30am everyone morning, including weekends, to discuss Chad's condition. Blood is drawn from Chad's Hickman catheter each morning at about 4am. The catheter is connected directly to a primary vein leading into Chad's heart and sticks out of his chest (I will add of picture of the catheter in a few days-it is very hard to explain without a picture). He does not feel any pain when blood is drawn, fluids are given, or chemotherapy is administered. He is never poked with a needle to draw blood. This is the benefit of having a catheter installed. 2) Lisa gets her hospital meals at 8am, 12pm, and 6pm. Yummy, especially the Crunchy Cod (Ha Ha!!) 3) Chad's vitals-blood pressure and temperature-are take every four hours. 4) Chad's Hickman catheter has to be cleaned twice a day, usually at noon and 6pm. 5) In between all this, we sleep, watch Judge Judy and CNBC, play with Chad's toys and visit with family.

Can you hold him?
Yes, all the time. We have a limited range of movement because of the IV, but Chad is in our arms either sleeping or playing a large part of the day. Chad does not sleep in a crib. He is nestled right next to Mom or Dad anytime he sleeps in the bed.

How do you keep him still enough to have the IV's inserted?
The IVs connect to his catheter. Because the catheter hangs outside his body and can be easily connected to the IV lines, Chad does not even know the IV is being inserted/connected.

What about the hospital...are the people friendly?
We have an all-star for a doctor. He has even written a book on childhood cancer. The nursing team has been very supportive and knowledgeable. Other than the fact that we have changed rooms almost a dozen times for various reasons, the hospital stay has been pleasant. Oh ya, don't forget about the scrumptious Crunchy Cod.

October 14^th, 1999
The results of the Bone Marrow Aspiration and throat examination are in. No leukemia cells are present in his bone marrow. This is great news and suggests that the chemotherapy regimen is working. A small percentage of leukemia patients due not respond to the treatment, which puts these babies in a desperate situation. It appears we are not in this group. Now we just have to hope that the leukemia cells do not return.

The averages reveal that 95% of children will enter remission and 40% of them will relapse. However, Chad was diagnosed as an infant (less than 1 year old) and this group of leukemia patients behaves very differently than the rest of leukemia population. Our prognosis is probably not as good, but so far Chad has responded very well and the doctors are optimistic. Our biggest fear right now is infection, in particular the pseudomonas. If Chad's white blood cell (WBC) count drops again, these bacteria could cause us more problems. Right now Chad's WBC is about 4000, all of which are good infectious fighting cells and not the leukemia cells. If his WBC drops to 100 again, we could be in for some trouble. We do not expect his WBC to fall to this level anytime soon.

There are no problems with Chad's throat or stomach. His eating problems could be simply due to an eating aversion acquired over the past few weeks. The doctors think this aversion will subside over time (a week or two??). Chad had been vomiting frequently over the past week with last night being the worst we have seen. We discovered that the fats (lipids) in the TPN were likely causing Chad to throw up. His TPN was modified to exclude the lipids and he has not thrown up since then. Our challenge over the next few days is getting Chad to eat and drink again.

The EEG test was conducted improperly, so we are not sure when we will reschedule this test. The doctor is not that concerned with any issues with Chad's brain functions, therefore it could be a while.

Pictures should be on the site sometime this weekend. You will be surprised by how good Chad looks considering everything he has been through the past few weeks.

October 15^th, 1999

Chad's eating and sleeping woes continue. An occupational therapist (OC) had joined the team to help us get Chad eating again. We had been directed to force feed foods into Chad's mouth, but the OC said this the worst thing to do. Instead we will put Chad in his high chair, place the food and drink in front of him, let him play with the food and hopefully he will start putting the food into his mouth. I am skeptical. The eating issues are precluding us from going home, so the sooner we resolve this problem the sooner we will be home. If we do go home, it will be short (a week or two). The second stage of the therapy, Reinduction, is very intense and will begin shortly. We will probably be back in the hospital for most of this 21-day period of therapy.

Chad is off all antibiotics. At one time he was on six different antibiotics, some to prevent bacteria infections and others to kill any fungi in his system. The only things he is getting now are the IV fluids and an occasional dose of Tylenol or Benadryl. He is still throwing up once in a while. No one knows why. In fact the doctor said this morning Chad is challenging him.

Friday October 16^th and Saturday 17^th, 1999
Our streak of good days ended over the weekend. Chad had some serious side effects to the Methotrexate that was given on Monday of this week. He developed a sunburn-type rash on his back, stomach, legs and arms. Very painful sores formed in his mouth and the nausea returned. The doctor was not initially sure what was causing these problems, so he re-started the antibiotics to prevent potential infection. Because of the pain associated with the mouth sores and rash, we had to put Chad back on morphine. At first, the thought of using morphine scared us and we were deeply concerned about Chad becoming addicted to this powerful drug. He is receiving a very small doze and will not become dependent on it. The pain from the therapy demands some type of sedation and the doctors have assured us that the morphine is a safe drug to use during his treatment.

The doctor told us that we should expect to spend the next 4 to 6 weeks in hospital. This sounds like bad news, but from our perspective this news was favorable. Chad's condition can change in minutes. Everything was going great this week until late Friday night when Lisa noticed the rash. Within an hour, Chad was back on antibiotics, ran a fever, resumed vomiting and became uncontrollably irritable. If we had been at home (remember home is not really home since we have temporarily moved in with Chuck's parents), we would have been a nervous wreck and back in the hospital immediately. The important things are that we are all together and able to response rapidly to Chad's need. Strangely enough, we prefer to be in the hospital.

The mouth sores were probably contributing to Chad's eating and drinking issues. These sores do not have to be visible to cause pain and were likely present earlier in the week and we just did not notice them. The sores should disappear in a couple of weeks. Until then, we will not be able to feed Chad any foods orally. The TPN (i.e. cheeseburgers in a bag) has been hooked back up to the IV so that Chad gets all his nutrients and maintains his weight. We discovered that the TPN was not the cause of Chad's nausea. It was more attributable to the Methotrexate. Trying to feed Chad was very stressful, so waiting for the mouth sores to heal takes some of the burden off our shoulders, at least for a while.

We had an ultrasound of Chad's lower chest done on Saturday. The doctors wanted to look for any digestive problems that could also be causing Chad's eating difficulties. No problems were discovered and Chad's kidneys, bladder and other organs continue to function properly.

Chad is becoming neutropenic (low infectious fighting ability) again due to the Methotrexate. His white blood cell count is down to 1100 and will continue to drop over the next few weeks. These days are going to be tough on us because Chad will have reduced ability to fight off infection. If the pseudomonas comes back again, we could be in for some trouble.

Over the weekend Chad received two blood transfusions and a heavy dose of platelets. Thanks again to everyone who has donated blood in Chad's name.

 

Monday October 18^th, 1999
Today was a day of sleep. Chad rested almost the entire morning and afternoon. He got up and played a couple of times, but only for a short time. His white blood count stayed at about 1000, which is not great but could be worse. Chad started to receive his second 24-hour dose of Methotrexate. A relatively uneventful day.

Tuesday October 19^th, 1999

Chad continues to struggle with his month sores, nausea and fever spikes. All the blood culture tests have shown that Chad does not have any type of infection, which is good news. However we are still unsure why he has fever spikes. As we move into the tough stages of chemotherapy over the next few weeks, these fever spikes could be a big problem if they are indeed caused by some infection we have not yet detected. The next phase of chemotherapy that will start in a week will definitely reduce his white blood cells. Today his white blood cell count was at 1600, an increase from yesterday. This suggests that his bone marrow is healthy and productive.

Chad received platelets today because his own platelet count was very low. The minimum level should be around 100,000. Chad's level was at 17,000 today and has been as low as 6000 in the past. Remember that platelets allow the blood to clot. A reduced platelet level could cause excessive bleeding and can prevent us from performing any evasive surgery if necessary, again due to excessive bleeding. Platelets are very sensitive to the chemotherapy and usually regenerate shortly after chemotherapy is stopped.

We asked our doctor today about transferring to a renowned Cancer Hospital. We were told that the Children's Cancer Group and National Cancer Institute standardize treatment protocols for children, therefore we would receive the same chemotherapy treatment wherever we went. As I have mentioned before, we have a strong team of oncologists, virologists, pediatric nurses and surgeons. Unless something drastic happens, we will remain here in San Antonio.

Many of you may be wondering about our work situation. Lisa had not intended on working for a couple of years. My employer, A.T. Kearney, has been very flexible and supportive throughout this ordeal. I will probably start work sometime next year (January or February). Hopefully by that time Chad will be through the first three stages of chemotherapy (1^st Stage-Induction; 2^nd Stage-ReInduction; 3^rd Stage-ReIntensification). These stages are brutal. The last three stages (4^th Stage-Consolidation; 5^th Stage-Intensified Maintenance; 6^th Stage-Maintenance) are not as intense and Chad will likely be at home receiving out patient therapy.

Wednesday October 20^th, 1999

Chad's schedule today was fairly simple: sleep, watch the Price Is Right, sleep, watch Wheel of Fortune, sleep, watch his Sesame Street videos and you guessed it, sleep. He is still running a fever, but has thrown-up less frequently today and his mouth sores are healing. The Methotrexate typically stays in the body for a few days. However, Chad excreted this dose of Methotrexate fast (through his urine) and this may be the reason for the reduced vomiting. His white blood cell count jumped to 2200 and the platelet count soared to 94,000.

 More Pictures tomorrow!!!

Thursday October 21^st, 1999

Chad tipped the scale at about 22 pounds. He weighed about 17 1/2 pounds when we entered the hospital over six weeks ago. A side effect of the chemotherapy is fluid retention and hair loss. Of course these side effects are purely cosmetic, but sometimes we look at Chad and see a different baby. His behavior has changed somewhat as well. Before we entered the hospital, Chad always wanted to be held by Lisa. When I had him in my arms and Lisa walked into the room, he would immediately scream for Lisa. Now, because Lisa has been administering some of the oral drugs to Chad and cleaning his catheter site (both of which are unpleasant for Chad), he is afraid Lisa is going to do something to him and comes to me for comfort. The roles we had before the diagnosis have been totally reversed. I have to hold him when he is upset, put him to sleep, and comfort him after he gets sick. We have started letting the nurses do some of the tasks Lisa was performing so that Chad begins to dissociate Lisa with some of the unpleasant tasks that have to be performed daily.

We still have not been able to determine the cause of Chad's nausea. It could be the Methotrexate or a drug called Leucovorin, which is a drug used to rescue the body from toxic levels of Methotrexate. If this drug were not given shortly after the Methotrexate, the Methotrexate would literally destroy his organs. The Leucovorin reacts with the body's cells to minimize the toxic effects of the Methotrexate. However, the Leucovorin also has some potential side effects including nausea.

We are going to take a break from writing on the Web Page for a few days. Unless something drastic happens, the next write-up will be for the entire weekend.

Friday, Saturday, and Sunday - October 22^nd, 23^rd, 24^th 1999

The past couple Fridays have been problematic and this Friday was no different. Late in the evening on Friday night Chad excreted blood in his stool and the volume of vomit drastically increased. This made Lisa and I very nervous. To add more tension, we did not have the nursing team we usually have because it was a weekend night. At 2am Saturday morning, our doctor was called and he ordered several things. More platelets were infused to ensure that Chad had enough just in case he released a lot of platelets in his stool. His platelet level after having two infusions on Friday was a whopping 350,000. The x-ray machine was brought into our room at 3am to examine Chad's stomach and intestine again. The tests showed no abnormalities. At 4am the portable sonogram was wheeled into the room to further examine Chad's intestine. Once again, nothing unusual. We finally went to bed at 4:30am.

On Saturday morning our gastrointologist ordered a NG tube to reduce the nausea and vomiting. The tube enters into Chad's nose, goes through his throat and sits in his stomach. The other end of the tube is connected to a suction device that pulls out Chad's stomach fluids. Because Chad would pull the tube out with his hands, we had to put his arms in splints. Not very comfortable for Chad, but he seems to understand that this tube is there for a reason.

A battery of other tests will be conducted over the next several days to identify the root-cause of the vomiting. One test already performed showed that his pancreas is OK. Other tests will look at Chad's small intestine more closely, examine his gall bladder and test for a graft versus host disease. His small intestine could be twisted, gall bladder could have stones, or his body could be rejecting his own organs due to his very low white blood cell count (now at 400). Each one of these problems is very rare, but could be causing the nausea and vomiting.

We discovered a water leak in our room Saturday night so we have moved to another room. For those of you keeping track, this is our 11^th move! Our room however is not new. We have been in this special room before. Since Chad is neutropenic (low white blood cells), we should be in a room that has positive pressure. A positive pressure room pushes air out of the room, which prevents airborne diseases from entering the room. We should be here for the next few weeks, assuming there are no more water leaks.
Back to the nausea/vomit reducing NG tube. Basically, it has not alleviated the vomiting much. Again, Chad has baffled the medical community with his unexpected response to the doctor's "solutions." The NG tube should have immediately sucked out the fluids in Chad's stomach that are causing the nausea and vomiting. NOT!! For some unknown reason Chad continues to throw-up even with the tube in his stomach. The tube could be resting against his stomach wall, which would prevent any fluids from entering the tube. Also, his emesis (the technical term for vomit) is very thick, therefore it may not be able to enter the tube or may be clogging the inside the tube. We tried another tube late Sunday night and it worked.

We have our Upper GI test scheduled for tomorrow at 8am. We are looking for any twisting in his small intestine. We should know something by tomorrow afternoon.

 

Monday October 25^th, 1999

Chad had his upper GI at 8am this morning. A large amount of barium was pushed down his NG tube and he threw up some of it during the exam. Lisa and I watched the x-ray monitor as the barium entered his stomach and small intestine. If Chad's small intestine was twisted, then the barium would not have entered the small intestine. Since the barium did enter the small intestine, we knew write away that the twisting was not a problem. The doctor did mention that Chad has gastrointestinal stoppage, possibly caused by the chemo and morphine. This is not that big of a deal right now and once the morphine is halted, the stoppage may just disappear. Chad has not thrown up since the new NG was inserted over 24 hours ago (the barium throw-up does not really count because the dosage was so large). He has not run a high fever in a few days despite his very low white blood cell count.

We start the third phase of Induction tomorrow. One of the drugs, Cytoxin, was given the first week of chemotherapy, while the other drug, VP-16, is new. The VP-16 does not usually have that many acute side effects, so hopefully this phase will not be as bad as the Methotrexate phase. Both of these drugs are given through the IV over a 1 to 4 hour period.

We have taught Chad several new words over the past few weeks. He now knows Clock, Stocks and Bonds (he likes the stock ticker running across the CNBC tv screen), Glasses, Maisy, Belly Button, Aunt Kim, Grandma, Granddaddy, Symba (from the Lion King), Wheel of Fortune, Price is Right, Eyes, Nose and Mouth. We bought some flashcards to start teaching him ABCs.

Tuesday October 26^th, 1999

Today was a pretty good day despite the infusion of two chemotherapy drugs into Chad's system. Chad was up playing most of the afternoon and evening. The morphine was stopped and Chad started pooping again, which is a sign that his stomach and bowels are indeed OK. The mouth sores are still around, but we are constantly treating them with sodium bicarbonate and nystatin. Hopefully these sores will disappear soon because they seem to be causing some discomfort.

We received a print out of our blood usage to date. Chad has been given 182 units a blood since September 7^th. Thanks again to everyone who has donated blood!!!

We have a CT scan scheduled for tomorrow to check for a sinus infection because Chad has had excessive mucus in his throat and stomach. This thick mucus may be causing Chad to gag and subsequently throw-up. We should know something by tomorrow. The nausea issue, although not as severe lately, has not been fully resolved. Again, it could be due to the multitude of drugs he is taking.

  

Wednesday and Thursday, October 27^th and 28^th, 1999

Chad has been doing much better over the past two days. He is up and playing for several hours at a time and is sleeping soundly. The mouth sores are still bad, but these will go away as soon as Chad's white blood cells come back in a couple of weeks. The NG tube has eliminated the vomiting completely and Chad has even started to nibble on cookies. The CT scan revealed that Chad's sinus is full and the possibility of a sinus infection. So we have added an ENT (ears, nose and throat) doctor to the team. Our team includes: pediatric oncologist (cancer doctor), virologist (bacteria, fungus and virus doctor), pediatric gastrointologist (stomach and intestine doctor), ENT doctor, pediatric nurses, occupational therapist and pediatric radiologist. Oh ya, don't forget about the coach and quarterback of this team, Mom and Dad.

One of our friends brought something to our attention. The National Childhood Cancer Foundation has a holiday greeting card program. Childhood cancer patients and survivors design Holiday cards. Every Penny raised goes directly to pediatric cancer research. The web address is www.nccf.org. Everybody needs to buy holiday cards anyway and they're really cute! Check the web site out when you can.

 

Friday, Saturday and Sunday October 29^th, 30^th and 31^st 1999

There has been no significant change in Chad's condition. He has not run a fever in several days, his heart rate has slowed to a more acceptable level and he has shown no signs of any infection. Because Chad seems to be more relaxed, he has been sleeping for about 18 hours a day. We are still very nervous about the next several weeks because Chad's white blood count is very low and his infection fighting ability is virtually zero. The chemotherapy for this first stage of treatment (Induction) is over!!! Chad is now receiving Nupogen, a steroid to help accelerate the growth of white blood cells. His white blood cell count should recover in about two or three weeks. Once Chad's white blood cell count recovers, we then have to resolve his eating issues. This could take a while.

We had a fun Halloween. A nurse dressed up as Winnie the Pooh and came by the rooms. Chad was a little concerned with the size of Pooh. Also, Winnie the Pooh had a mustache and beard (the costume did not cover the nurses face).

 

Monday November 1^st, 1999

Another day of sleep and relaxation. We did have an infection scare last night. Chad has a swollen area just above his catheter site, which could be caused by some type of bacteria or fungus. The doctor thinks the area is only a bruise, but since his white blood cell count is so low, we are worried about infection. We have to closely watch this area over the next several days. Other than this swollen area, Chad continues to recover from the heavy doses of chemotherapy he received over the past six weeks. All tests over the past few weeks have shown no evidence of organ damage from the chemotherapy.

Our days are still fairly busy even though the chemotherapy has stopped for a while. Until the white blood count increases, Chad will remain on the antibiotics (Vancomyasin, Gentamyasin, Fortaz, Amphoterisan aka Ampho the Terrible), anti-nausea medication (Zofran), TPN for nutrition, lactated ringers (fluids), Nupogen shot to boost his white blood cell production and Benadryl. Everything but the shot is given intravenously. Twice a day we have to 1) clean his catheter site with Hydrogen Peroxide and Bactroban 2) clean his nose with a saline spray 3) treat his mouth sores with Nystatin and Sodium Bicarbonate. His vitals--blood pressure, pulse and temperature--are taken every four hours. We usually have a visit each day from our oncologist and virologist.

The next phase, Re-induction, will begin in four or five weeks and will last about 24 days. Studies show that this stage of treatment has fewer complications and side effects. When Chad's white blood count recovers and before Re-induction, we are hoping to do some fun things with him. He has not been outside since September 7^th. Chad loves going for car rides and strolling around the mall. We are going to take advantage of every opportunity we get. It is amazing how the little things mean so much these days.

Tuesday through Thursday November 2^nd to 4^th 1999

We are on the road to recovery. Chad has started to produce white blood cells and he feels much better. Chad's wound around his catheter is healing properly, the swelling above his catheter appears to be just a bruise and the vomiting seems to be diminishing. We will probably be home for Thanksgiving, assuming his eating issues are resolved. It will be nice to get away from the hospital for a while. We find ourselves calling the hospital "home" sometimes.

We contacted the blood bank on Thursday to get the amount of blood donated so far. When I called the blood bank and gave them Chad's name, the representative said, "Wow! That's a lot of blood." We have close to 200 units of blood donated to date. This does not include blood donated through the Red Cross. This is amazing! We can not thank everyone enough for your efforts and generosity.

The doctor wanted to keep the NG tube in for a few more days, but Chad decided otherwise. He yanked out the tube on Thursday night. He loved the freedom and here are some pictures to prove it. As long as he does not start vomiting again, the tube will remain out.

I

Friday through Sunday, November 5^th to 7^th 1999

We have moved into the fast lane on the road to recovery. Chad's white blood cell count on Friday, Saturday and Sunday were 5500, 7500 and 15000, respectively. His mouth sores are gone, the vomiting has stopped, the rash has disappeared and his vitals have stabilized. Chad has even started to drink again and has shown interest in eating. The antibiotics, morphine and fluids have all been disconnected and the only thing Chad still receives intravenously is the TPN, which is just for 12 hours each night. This is the first time in two months that Chad has not had any IV lines connected to him. This means we are able to move around freely (we call this time our jail breaks). We walk around the halls and hang around the playroom. We are not able to go outside yet.

Since the morphine has been stopped, Chad has had some trouble relaxing. Lisa and I were up all night Saturday and Sunday morning with him. Most of the time he wants to play or watch Sesame Street videos, but he is also very grumpy and irritable. He will likely be this way for a few days as he comes down off all the medicines.

We will be going home on Tuesday assuming nothing unexpected happens. We are all getting very tired of our little hospital room, especially Chad. He points to the door of our room because he wants to get out and roam the halls. He is going to love being around his Grandmas, Grandpas, Aunts and Uncles. He gets upset when they leave after visiting us at the hospital.

Home health care will visit us each day. They will help administer any medications if necessary and hang any IV fluids if needed. Chad will remain on the TPN for a while. Hopefully we will resolve the eating problems soon. This will allow us to stop the TPN, but it could be a while. The doctor even mentioned putting a feeding tube in his stomach if does not start eating (the TPN could do long-term damage to his liver, so we can not continue indefinitely with it). Lisa and I are determined to get Chad eating again and avoid the feeding tube. Maybe one of Grandpa's famous Rib-eye steaks will spark Chad's appetite.

We (and the cancer) do not get much of a break from treatment. In a week or so, Chad will start the Re-induction phase on an outpatient basis. We will enter the hospital if Chad begins to run a fever or starts to have other complications from the chemotherapy. We will visit our oncologist at his office each day and may have to enter the hospital to receive some of the chemotherapy. This phase lasts only three weeks and we have already seen most of the Re-induction drugs during the Induction phase, so we know what to expect. However, anything can happen and we will still be very cautious, careful and will not hesitate to rush Chad to the hospital if something seems unusual.

Chad likes watching football on Sunday and Monday night. To get pumped up for the games, I give Chad my Cowboys hat.

 

Monday through Thursday, November 8^th to 11^th 1999

On Tuesday at about 3pm, we left the hospital. After two months and two days the three of us were ready to leave. We practically needed a U-Haul to move all of our stuff from the room to the car. On Monday Lisa had to go out and buy a car seat because Chad had grown out of his current car seat. Lisa also had to buy Chad some new clothes. He is 32 inches long and weighs over 22 lbs, which demands 18 to 24 month clothing. The nurses threw Chad a party and gave him a cake to celebrate our departure. The nurses said they were glad that we made it through the Induction phase and were going home, but I think they were happy to get rid of us (Ha! Ha!).

Chad's condition is getting better. His white blood cells were at 12,000 when we left the hospital and his platelets remained stable at 50,000 on Monday and Tuesday. We will not do another blood test until Friday when we see our oncologist at his office. If Chad's platelets are above 100,000 and his ANC is higher than 1000, we will start the next round of chemotherapy (Re-Induction) on Monday, otherwise we will wait until next Monday. We are hoping that we get a break and do not start until next Monday.

Chad is drinking again and we have been able to feed him with much less resistance. He has skipped sucking on a bottle or sippy-cup and just gulps from a cup. His favorite drink is Grape Gatorade. Chad still does not eat enough on his own so we have the TPN running from 7pm to 10am each day. Once Chad intakes enough food, the TPN will stop.

Coming home has been a relief, but it has also brought many new challenges. Home health has come by twice each day that we have been home to start and stop the TPN. However, the visits are primarily to train Lisa and me on how to do the TPN ourselves. We have a small pump that pushes the TPN into Chad's catheter. The pump and TPN are placed in a small backpack that makes transportation easy. We can even leave the house and just carry the backpack around with us.

Connecting and disconnecting the TPN requires many critical steps, which places a lot of pressure on us. We have to mix vitamins with water, draw the mixture up in a syringe and then inject the mixture into the TPN bag. The vitamins can not be added to the bag at the pharmacy because the vitamins are very unstable in the TPN mixture. Each of the catheter lines has to be flushed and cleaned. Even though we have left the hospital, we still have to clean the catheter site and administer other medicines. We do not have the nurses around to help. This makes things more challenging, especially when we have any problems. At 5am on Thursday morning, Lisa and I discovered that the TPN line was leaking. The home health nurses had to come to the house to fix the line.

 

 

Friday to Monday, November 12^th to 15^th 1999

We had two important doctor's visits, one on Friday and the other on Monday. Friday's exam was to check Chad's blood work and to determine if he was ready to begin the next round of chemotherapy (Re-Induction). His ANC (absolute neutrophil count) had to be above 1000 and his platelet level had to exceed 100,000. Friday's blood exam showed that Chad was producing good white blood cells, red blood cells and platelets, which is great news. His ANC was well above 1000, but his platelets had not reached 100,000 yet. We would come back on Monday for another blood test. If Chad's platelets were above 100,000 we would begin Re-Induction.

The rest of the weekend was great in the afternoon, but difficult at night. Chad wakes up almost every hour during the night, cries for several minutes, sometimes has to be rocked back to sleep and occasionally is inconsolable. He sleeps in the bed with me and Lisa, so everytime he wakes up, we wake up. Chad has never really been a good sleeper and he has apparently forgotten all the good sleeping habits we taught him prior to the diagnosis. We think the excess mucous and sinus drainage is causing some discomfort. Hopefully the drainage will get better over the next few days and help Chad sleep a little better. He still gets a good 10 to 14 hours of sleep each day, which prevents him from getting irritable. Chad still does not eat a whole lot, but has been drinking more and more each day. Chad could be on the TPN for six months to a year if his food consumption does not increase. However, if you notice from the pictures over the past few weeks, Chad is not malnourished. He continues to slowly put on weight. We have started to call him our little Linebacker because of his size and strength.

Chad spends the afternoons strolling around the neighborhood, swinging in his new swing in the backyard and of course, watching his Sesame Street and Maisy videos. These videos rock!! I find myself singing and dancing to the videos more than Chad (I know for those of you who know me that is probably a scary mental picture, but Chad thinks it's funny). He is very happy around family. Having family around has been a tremendous benefit for us, especially around dinnertime. Our families have made us Chicken Cacciatore, stuffed Bell Peppers, Rib-eye Steaks and other delicious meals over the past few days. Chad still prefers his TPN.

Home health trained Lisa on how to administer the TPN, clean the catheter ports with saline, draw up necessary fluids and start the IV pumps. At first, Lisa was very concerned about doing these critical procedures without medical supervision. Over the past few days she has established a routine and become a little more comfortable with the enormous responsibility. Home health does not stop by each day. They visit when something unusual happens or when new drugs have to be given. We have a large dresser full of medical supplies and the home health pharmacy delivers supplies to the house when necessary. It is very strange going into Chad's room and seeing all the medical stuff in and on the dresser. It reminds us of how sick Chad is.

We were anxious during Chad's Monday morning doctor's visit. If Chad's platelet count jumped above 100,000, we would begin the next round of treatment. If it was below 100,000, then we would wait one week to start Re-Induction. Lisa and I were hoping for a break from the treatment until next Monday. The blood test showed that Chad's platelet count was 99,000. I think his body was telling the doctor it wanted a break also. We will begin Re-Induction next Monday.

Re-Induction is a 21-day period of intense chemotherapy. It is not as strong as Induction, but some of the same powerful drugs such as Cytoxin and Daunomycin are given during Re-Induction, just at lower doses. Chad will become neutropenic again around November 30^th and could last a couple of weeks. If he does not run a fever, we will remain at home but will not be able to leave the house. This will be hard because he is used to going outside. We may also have to go to the hospital for blood transfusions.

We all went to Sears for Chad's first birthday pictures and Christmas pictures. We should be able to get these off Sears' Web site soon and post them on this web page.

Tuesday to Thursday, November 16^th to 18^th 1999

Nothing too exciting happened over the past three days. We had a visit with Chad's gastroenterologist on Thursday just to assess his eating, drinking and digestive progress. Chad's still does not eat a lot, but he is eating some and this is good considering he did not take any food by mouth for over 6 weeks. Chad is showing more interest in eating and even has chewed on a Burger King Whopper. He wants to eat anything the adults eat and refused to take his baby food.

We want to thank the following groups and organizations for sponsoring blood drives in Chad's name. The response from friends, family and people we have never met has been beyond anything we would have imagined.

A.T. Kearney
H.E.B. Central Market
EyeMasters
Judson High School
Concordia Church
St. Mary's University
Gunn Cheverolet

Friday to Tuesday, November 19^th to 23^st 1999

Sorry for the delayed write-up, the past several days have been very busy. Most of the excitement on Friday and Saturday was caused by the TPN. The TPN/Catheter connection valve broke five more times, causing TPN to leak from the IV lines. On one occasion, I actually heard the valve crack while I was sleeping with Chad. Lisa and I believe the connection valve was cracking whenever Chad coughed or cried hard. The home health nurses told us that this never happens. Once again Chad does something completely unexpected, confusing everyone. Lisa and I were very frustrated, especially since most of the breakage occurred in the earning morning hours.

On Saturday, the scab over Chad's wound (the one above the catheter caused by the pseudomonas bacteria) came off. The wound had healed and only a small hole still remained. Unfortunately, the small hole exposed the catheter cuff underneath his skin. If the cuff became infected, Chad's condition could deteriorate quickly. The catheter had to be removed and a new one surgically placed on the other side of his body. We suspected this might happen when the wound was noticed several weeks ago, but we hoped the wound would completely heal. However, it did not and surgery was scheduled on Sunday to put in the new catheter.

We arrived at the hospital at 9am on Sunday morning. We had gone through this surgery before for the first catheter, so we knew what to expect. Chad's blood count and platelets were much better for this surgery than the first, therefore we did not expect as much bruising and soreness this time. The surgery ended at about 11am with no major complications. One of the surgeons did notice that Chad's heart was slightly enlarged, which scared us. However, after an ECG and an echocardiogram, Chad's heart was just fine. Excess fluids injected during the surgery likely caused the enlarged heart.

When I picked up Chad after the surgery I immediately noticed that the new catheter was different from the old one. Lisa and I were very concerned about the change. We were told that this catheter is the newest and best catheter available. We were still very suspicious of the new catheter, especially when the nurses present during the surgery did not recognize the catheter and did not know how to use it. The new catheter would turn into a huge issue on Monday afternoon.

Sunday night went by without any significant problems. Chad was restless and up every hour or two, but Lisa and I have become accustomed to Chad's sleeping patterns. The new catheter did not seem to cause any discomfort or pain.

We had an appointment with our oncologist at 9am on Monday morning to start the second round of chemotherapy, Re-Induction. The blood test revealed a very good white blood cell count and Chad's platelets were above 100,000. The blood test confirmed that we would start chemotherapy. Chad first received Atropeen to dry his mouth before the spinal tap. He was then sedated and a spinal tap was performed. Spinal fluid was drawn for analysis and chemotherapy (an Ara-C, Methotrexate and Hydrocortizone concoction) was injected into the spine. Lisa and I watched the whole thing. The new and old catheter site was cleaned and another chemo drug, L-Asparaginase was injected into his leg. After the spinal tap, we went to a recovery room for about hour. Once Chad woke up we would connect the final chemo drug of the day, Daunomycin, to his new catheter for a 48-hour infusion. He will also get many other chemotherapy drugs later in the week (Dexamethasone, Cyclophosphamide and Vincristine). Needless to say, he is getting another heavy dose of therapy.

Now for the really exciting part of the day. Just after we finally hooked up the Daunomycin at about 1:30pm, I noticed a leak in one of the catheter ports. A chemotherapy leak is HUGE hazard. Luckily, saline was pushed into the catheter before the chemotherapy and the saline leaked, not the chemo. However, we had a major problem-a broken port on our brand new, state-of-the-art catheter. The chemotherapy had to be hooked up to the other port and we had to go the hospital to have the broken catheter port repaired.

We arrived at the hospital at about 2:45pm. Lisa and I were furious over the catheter situation. We were not told that a new catheter would be installed, and one of the two ports had already broken. Furthermore, we discovered that this was the first catheter of its kind installed at the hospital and that no one was trained on how to use it. After all this, the IV-specialist nurse comes back after about an hour of searching to tell us that there is no repair kit available for our new catheter. Lisa and I exploded!! We called our oncologist to express our concerns and he could not believe what was happening with the catheter. At about 4:00pm, we decided to replace the broken port with a catheter similar to our original one. Finally, we had the port repaired. While all this was happening, the pump for the chemotherapy failed and we waited an hour for a replacement. We finally left the hospital at 6pm.

At home, the outpatient chemotherapy became too much for me and Lisa to handle. We had three backpacks; one holding the Daunomycin and a pump, one containing Zofran (an anti-nausea medicine to counteract the effects of the chemotherapy) and a pump, and the third backpack had the TPN and a pump. In addition to the handling and monitoring the backpacks, we had to crush Decadron (a chemo drug), mix it with a grape flavoring and then give it to Chad orally. Remember he does not like to take anything by mouth, so giving this drug is very difficult. We had to do the same for Pepsid. The Decadron has to be given three times a day and the Pepsid twice a day. Many other drugs are scheduled in the next few weeks and with all the complications we have had the past few days, we decided that entering the hospital would be best. After our appointment with our oncologist on Wednesday at 9am, we will enter the hospital for the next few weeks.

Wednesday to Sunday, November 24^th to 28^th 1999

The hospital stay has been a relief. We have taken a break from the responsibilities associated with being at home and let the hospital staff deal with any problems. Thankfully we have not had much trouble over the past several days. We have made some major progress with the eating issue. Chad has started eating voraciously again!! However, he has a spoon phobia. Yes a spoon phobia (This one is definitely not in the medical books). He refuses to eat his baby food off a spoon. We have to dip a bread role into his baby food and then feed him. You are probably wondering how we figured this one out. For about three weeks Chad has shown interest in eating adult food, but we could not give it to him because he would likely choke. Each time we tried to feed Chad baby food, we sort of forced the food into is mouth with a baby spoon. He quickly acquired a dislike of the spoon. A few days ago Chad stared at Lisa and me as we ate some Chicken McNuggets. We decided to put some baby food on a Chicken McNugget and let Chad eat off it. He loved it!! Now he eats his food off pretzels, chicken nuggets, dinner roles and any other adult food. On Sunday he ate almost three large jars of baby food. His favorite Gerber meals are Chicken Noodle and Vegetable Bacon. He also drinks a lot of Gatorade and water. Hopefully we will be able to gradually reduce the TPN infusions, eventually eliminating the need for any IV nutrition.

Chad continues develop as any other baby. He has his fifth tooth breaking through his bottom gum. He already has two on bottom and two on top. He has learned many new words: "exit sign" for the bright emergency exit signs in the hospital, "fan" for the ceiling fans at home, "wind chimes" in the backyard, "dog" and "Sidney" to identify my parent's dog, "walk" and "outside" to leave the hospital room or house, and many other words. He is babbling all the time and moos like a cow. He probably will not start walking for a while because the treatment causes serious bone pain at times.

Thanksgiving dinner was brought to our room twice. My parents came by the hospital with lunch and Lisa's parents dropped off dinner. We may also have to celebrate Christmas and New Years in the hospital. It is really not too bad. Our family spends time with us, and Lisa, Chad and I are together so the only unusual thing is that we are celebrating in a hospital room. The Re-Induction phase is going very well so we should be home by mid-December. If Chad's blood count recovers quickly then we may start the next phase, Re-Intensification, before Christmas. We would be receiving outpatient treatment again, therefore will only enter the hospital when Chad develops a fever or something unusual happens.

 

Monday to Thursday, November 29^th to December 2^nd 1999

Things at the hospital have been relatively calm the past few days. Chad became neutropenic on Thursday and will likely stay that way for at least a few days. We do not have him on any heavy antibiotics, so we are hoping no major infection invades his body. We closely watch his temperature and if it goes above 100.5 degrees, then we start giving him the antibiotics. We also monitor his blood pressure, heart rate and breathing for anything abnormal.
Chad's eating and drinking have improved dramatically. He drinks from his sippy cup now, which makes much less of a mess than a Gatorade bottle. He has gone from a couple of sips to large gulps and points at his cup when he gets thirsty. We are going through several large jars of baby food each day and have phased out the bread dipping process. Chad now eats from a spoon. Not a baby spoon of course. It has to be an adult spoon. Chad will stay on the TPN, but we may be off the TPN soon.
I was reading the Leukemia Society of America's web page the other day and found some interesting facts.

• It is estimated that there will be 28,700 new cases of leukemia in the United States this year — about equal proportions are acute leukemia and chronic types. Most cases occur in older adults. Leukemia is expected to strike ten times as many adults as children in 1998. (About 26,500 cases compared with 2,200 in children, ages 0-14.) More than half of all cases of leukemia occur in persons over 60.
• The most common types of leukemia in adults are acute myelogenous leukemia (AML) with an estimated 9,400 new cases annually; and chronic lymphocytic leukemia (CLL), with some 7,300 new cases this year.
• Chronic myelogenous leukemia (CML) strikes about 4,300 persons each year. Acute lymphocytic leukemia (ALL) will account for about 3,100 new cases of leukemia this year. It is the most common form of the disease in children, with 1,300 new cases among children each year.
• This year in the U.S., approximately four in every 100,000 youngsters (ages 0 - 14) will develop leukemia.
• Some 21,600 persons will die from leukemia this year in the U.S; approximately 12,000 males and 9,600 females.
• There will be an estimated 4,800 deaths from chronic lymphocytic leukemia and 1,300 deaths from acute lymphocytic leukemia. There will be an estimated 2,400 deaths from chronic myelogenous leukemia and 6,600 deaths from acute myelogenous leukemia. Other forms of leukemia account for 6,500 additional deaths.
• The leukemia death rate for children in the U.S. has declined 57 percent over the last three decades. None the less, in children under age 15, leukemia causes more deaths in the U.S. than any other disease. There will be approximately 550 deaths from childhood leukemia in 1998.
• Over the last 20 years, death rates for leukemia have fallen 20 percent for U.S. men and women under the age of 65. This decline in mortality reflects the strides being made in research and treatment of the disease
• The overall five-year survival rate for patients with leukemia is 42 percent. The five-year survival rate for African American patients with leukemia is 33 percent.
• The five- year survival rate for leukemia has tripled in the last 38 years. In 1960, the survival rate was 14 percent. People with acute leukemia usually died within months, while individuals with the chronic types might have survived only a few years.
• The overall five-year survival rate for children with acute lymphocytic leukemia now is 80 percent. In 1960, the survival rate was 4 percent. There has also been dramatic improvement in survival rates for adult lymphocytic leukemia patients.
• There are approximately 140,000 leukemia patients in the U.S.
• Acute lymphocytic leukemia has an unusual pattern of age distribution. In the other types of leukemia, older people are more likely to develop the disease. In acute lymphocytic leukemia, young children are most likely to develop the disease. Risk of developing the disease peaks at 4 years of age and then decreases until about age 50. At age 50, the incidence increases again, especially among men. Although remission rates and remission duration have improved in adults, current therapy has not resulted in the high rate of extended remissions (greater than five years) and cures possible for children
• In children, the probability of an extended remission or cure has increased from less than 5 percent in 1960 to over 75 percent in the mid-1990s.

 

Friday to Monday, December 3^rd to December 7^th 1999

We had another challenging weekend. The second round of Chad "Big, Bald, and Bad" Harthan versus Pseudomonas the Bacteria occurred. Remember that the first round was a draw. Chad beat the pseudomonas but he does have a scar and did have to get a new catheter because of these bacteria. The second round eventually went to Chad, but on Friday night Lisa and I thought the pseudomonas was going to win this round. Here's the blow-by-blow detail.

Chad formed a sty on his upper left eyelid on Friday morning. The sty was only a small, white spot the size of a pencil tip and the swelling was barely noticeable. Unfortunately, Chad's white blood cell count hit bottom at the same time the sty developed. With virtually no ability to fight infection, the pseudomonas found the sty and began to grow rapidly. Last time the pseudomonas attacked Chad's body it destroyed some of the skin by his old catheter site. Since this area was on his chest, the damage to his body was minor and only a scar would remain. However, this time the pseudomonas was near his eye. Lisa and I feared that Chad was lose part of his eyelid and possibly his eye. If we did not stop the bacteria quickly, we would have to deal with some serious long-term cosmetic and functional issues with this eye.

On Friday night, the swelling around the eye ballooned to the size of a grape. Because the swelling was minute on Friday morning, the medical team did not feel any significant action was necessary. We had to call our doctor Friday night and let him know that the eye had become much worse and that the eye doctor needed to take a look at Chad immediately. By now, Lisa and I expected the worse and believed the pseudomonas would at least take part of his eyelid.

The ophthalmologist, the newest member of our medical team, arrived at 11:30pm on Friday night to check out Chad's eye. He assured us that the eye infection, which could or could not be pseudomonas, would more than likely not cause any serious damage to the eyelid or Chad's vision. The ophthalmologist prescribed two eye ointments to fight the infection. We would have to put these medications in Chad's eye every two hours for the next 24 hours. In addition to these ointments, three other IV antibiotics (Vancomyacin, Fortaz, and Gentamyacin) would also help fight this infection and any others that may try to attack Chad's system. These antibiotics had already been started on Thursday evening when Chad spiked a short-lived fever. In addition to the antibiotics and ointments, Chad's white blood cell count recovered on Saturday.

On Saturday and Sunday the swelling diminished and by Monday Chad's eyelid looked much better. Chad was very grumpy because we had to wake him up every two hours to administer the ointments, but the pseudomonas (although the doctors are not sure the eye infection was pseudomonas, Lisa and I are convinced it was) was killed. Some minor swelling is still present and a small scab has formed where the sty was, but eventually these will heal. We now give only one of the ointments three times a day and will stop this medication in a couple of days. The pseudomonas was thwarted again, but Lisa and I expect to see these bacteria again in the future. Every time Chad becomes neutropenic, the pseudomonas surfaces. Chad will be neutropenic several more times during the next couple of years. This will probably not be the last time we fight these life-threatening and relentless bacteria.

Neglecting the eye infection, everything else over the past few days was smooth. Chad is eating about 10 large jars of baby food each day!! A week ago he was eating nothing. One of the drugs, Decadron, is a steroid that kills leukemia cells and has a side effect that boosts the appetite. This is why Chad eats so much. The TPN has been stopped. Chad drinks off and on, but he has been getting IV fluids that may be quenching his thirst. Once the IV fluids stop, we expect Chad to start drinking again. The IV fluids are still connected because it is easier to administer antibiotics when IV fluids are running. As of Monday, Chad is on only one preventative antibiotic, Fortaz, and that will be halted on Friday.

The Re-Induction phase is essentially over and we will be going home this Friday. Because Chad is off the TPN, Lisa and I will not have to worry about connecting anything to Chad's IV lines while at home. This is a huge relief and will make our time at home much more enjoyable. We will probably start-up on the third stage, Re-Intensification, on December 20^th and enter the hospital. This stage will last 45 days and will be difficult because of one drug, Methotrexate, which will be given in a very high dose. In addition, I will start work in mid-January. This is towards the end of Re-Intensification, which could be a very difficult time for Chad.

Tuesday to Tuesday, December 8^th to December 14^th 1999

Sorry to all the diehard Chad fans for the long delay. We went home on Friday and will be at home until Monday the 20^th.  The fight with the pseudomonas is over, but Chad did lose a small part of his eyelid, which may or may not grow back. If necessary, cosmetic surgery can easily repair the eyelid. At home, we are only giving Chad one oral medicine and one eye ointment. Chad is drinking his formula and eating a ton of baby food, so the TPN is not necessary. He is also sleeping much better.

We had a doctor's appointment on Monday to check Chad's blood. Everything looks great and we will begin the next round, Re-Intensification, on Monday the 20^th. This round lasts about 45 days and we will be in the hospital for the first part of this phase. Before we begin this round, we have to test Chad's tolerance for a particular drug called Leucovorin. Chad received this drug several months ago right about the same time he developed a sunburn-type rash. Our doctor thinks the Leucovorin caused the rash. If it did, then Chad can not get this drug anymore. This drug is necessary for Re-Intensification because it counters the side effects of the very high dose Methotrexate. Without the Leucovorin, the Methotrexate would destroy Chad's organs. So if Chad can not have the Leucovorin, then he also can not have the very high dose Methotrexate. As a result, we would have to skip this round of treatment and maybe part of the next. Skipping parts of the treatment is not good and gives the leukemia a better chance of coming back. Lisa and I do not expect any complications during the Leucovorin test. Chad was in such bad condition last time he got the Leucovorin that the rash could have been caused by many other things.

Chad will be one year old on the 18^th of this month. Since we will be in hospital on Christmas day, we will also celebrate Christmas on the 18^th. We did not think Chad would make it to his 1^st birthday, so we are going to party like it's 1999 (with punch and cake)!!

 

 

Wednesday to Sunday, December 15^th to December 19^th 1999

It has been a wonderful week. Chad has been feeling good, playing with everyone, and really enjoying the time away from the hospital. We celebrated his 1^st birthday on Saturday. Chad was a little concerned about all the people that were staring at him during his party (as the pictures will show), but he still had a good time. Of all the toys he was given, Chad still loves his broom the most. In fact, when he wants the broom, he will say "broo." He almost says the whole word.

We are back in the hospital on Monday for another round of treatment, Re-Intensification. This should be another tough phase of chemotherapy. This is third round of six and will last a couple of months. If we can get through this round and the next one, Consolidation, we should be in good shape. The last two rounds of treatment (Intensified Maintenance and Maintenance) are not as intense and should require much less hospitalization.

Be back soon with more details!!!

Monday to Thursday, December 20^th to December 30^th 1999

We are having problems with our webpage because Microsoft (MNS) changed the address. Please make note of the new address and change any bookmarks you may have created.

We started the very high dose Methotrexate on Tuesday December 21^st and Chad had no major complications. He did get some mouth sores and had a minor rash, but these were not that problematic. We did spend Christmas in the hospital and eventually went home on Sunday December 26^th. Chad did stop eating and was only drinking a very little amount when we left the hospital. The doctors told us that Chad would eventually start drinking and eating again, but Lisa and I were very concerned. This would become a huge issue in the a few days.

The next couple of days at home were pleasant. Despite Chad's lack of appetite and food intake, he still appeared to be OK. However, his condition worsened on Wednesday December 29^th and we had to rush Chad to the emergency room. He was lethargic, irritable and breathing heavily. Lisa and I thought that this was either due to a low red blood cell count or dehydration. After a few minutes in the emergency room, tests revealed dehydration as the most probable cause. Chad's basic electrolytes (Potassium, Sodium, Glucose, Carbon Dioxide, and Chloride) were out of balance, which can cause big problems. Last time Chad had an electrolyte imbalance, he had a seizure (a low sodium count back in September). This time his Potassium and Carbon Dioxide were very low. This can create muscle pain, fatigue and dehydration among other things. A bag of fluids with electrolytes was immediately attached to his IV lines.

If dehydration was the primary problem, then the IV fluids should have quickly corrected the electrolyte imbalance. Unfortunately it did not and the Potassium and Carbon Dioxide remained at low levels suggesting a possible problem with Chad's kidneys. On Thursday December 30^th a kidney doctor joined the team and discussed with us some of potential root causes of Chad's electrolyte imbalance. Best case would be a severe case of dehydration and the worst case would be kidney damage, probably caused by the Methotrexate. We will not know for several days the answer. If the past is any indication of the future, we may never know the cause of the electrolyte imbalance.

We are going to have to delay the next dose of Methotrexate that was scheduled for Monday. If the Methotrexate is causing any serious kidney problems, then this scheduled dose may be skipped. Chad's blood and bone marrow have been checked a few times over the past 10 days. Everything is good and he has not been neutropenic over past two or three weeks.

I start work soon and as a result, the web page will be updated every week on Sundays. If Chad's condition starts to improve, the web page will be updated every two or three weeks. We will make sure pictures are included every week. Thanks again to everyone who has joined us in our efforts to battle this disease.

Friday December 31^st to Sunday January 9^th, 2000

Chad was severely dehydrated, but does not have any problems with his kidneys or any other organs. Because he stopped eating and drinking anything significant, we are now back on the TPN and will be indefinitely. We were in the hospital from December 31^st to January 6^th allowing Chad's body time to recover. We will start the next dose of Methotrexate on Monday, January 10^th. The doctor feels we should not have any major problems the rest of this third round of treatment. Lisa and Chad will return to the hospital on January 10^th for a few days to get the Methotrexate. I will be on my way to Tarrytown, NY for training. Yes, I finally am starting work. Hopefully may brain still works and I do not spontaneously start singing "We just figured out Blues Clues, we just figured out Blues Clues, we just figured out Blues Clues because we're very smart" during meetings. Those of you with kids know exactly what I am talking about.

Monday January 10^th to Monday January 24^th, 2000

Well folks we are back after two weeks. Overall, Chad is feeling pretty good. Lisa and I were very concerned about what Chad would do when I left for two weeks of training beginning January 10^th. He did not seem to miss me much, especially since he has so much family around him. When I got of the plane after the two weeks of training in New York, Chad gave me a look of concern and confusion. It did not take long for him to forgive me and jump in my arms.

The first week that I was gone Chad was in the hospital for a few days getting the last dose of very high dose Methotrexate for this round of chemotherapy. Things went smooth and Chad did not have any major problems with the Methotrexate. Aunt Kim (Lisa’s sister) stayed in the hospital with Lisa and Chad. They went home after three or four days in the hospital. The next week was spent at home with frequent visits to the doctor’s office for more treatment and check-ups. Nothing major happened.

Chad is having a good time at home and is getting used to not being in the hospital. He is eating spaghetti and pudding, playing on the living room floor, and moving around in his little car (he stands in a seat and guides the car around with his feet). His sleeping habits are much better and he typically sleeps throughout the night as well as naps several times during the day. Of course, he has to have his mama next to him, holding his hand, otherwise he will not sleep.

We are wrapping up the third round of treatment this week. The last of the chemo drugs for this round will be administered in the doctor’s office. Chad will not have to go to the hospital unless he needs a blood transfusion. Lisa and Chad will go to the doctor’s office everyday this week for treatment and then go home in the afternoon on IV fluids, Zofran (anti-nausea medicine), and Mesna (a rescue drug that prevents the chemo from damaging organs). Everything is in a backpack and is pumped into Chad’s catheter lines. Lisa will have to start giving Chad Nupogen shots later this week, which is the first time she has had to do this. This week is very busy. Usually we are in the hospital for this type of treatment, but the doctor feels it can be done on an outpatient basis. My mother takes days off during the week to help Lisa.

We will back next week with pictures or more details. I am traveling the country now for work, so the web page at times will be brief.

Monday January 24^th to Monday February 14^th, 2000

Well folks it has been a while since our last update. The good news is that Chad has been feeling great over the past few weeks, so there has not been much to report, at least medically. We finished up the third round of treatment on February 7^th with little problems. Lisa did have to give Chad the Nupogen shots in his leg (to stimulate white cell growth) for 10 days towards the end of the third round of treatment. Lisa has been very busy trying to keep up with the demands of outpatient treatment. At home, Chad stills receives Diflucan (antibiotic) once a day orally, Magnesium Gluconate (vitamin supplement) twice a day orally, IV line flushes once a day, catheter cleaning once a day and usually some Tylenol. This on top of your standard 1-year-old challenges such as nonstop playing and the need for around clock attention. Needless to say, Lisa finds little time in the day to take a break, but the Grandmas, Grandpas, and Aunt Kim have been able to give her some time to herself.

Meanwhile, I continue to travel each week to Wisconsin. Yes, Wisconsin. It is the perfect time of year to be there. Wind chills at about 20 or 30 degrees below zero and snow everywhere. Just like San Antonio. NOT!

Back to Chad. He has regained his appetite and basically eats everything now. If fact, when we go out to eat (his favorite place is Luby’s Cafeteria) he points to all the food and screams at the food servers. He loves grilled cheese sandwiches, homemade vanilla pudding, banana nut bread, and sweat tea. It has only been a week or so since he has begun to eat substantial portions, totaling about 6 to 8 jars of baby food a day. There were some days just recently that he would barely eat one jar of baby food. He has been off TPN for a couple of weeks now and hopefully will be off it for a while. It seems has though Chad now knows how to eat. Only a few weeks ago he was gagging and choking on any solid food. Now he chews his food before swallowing. He now has a few more teeth to help out.

Chad has discovered Barney and watches Barney videos nonstop. He still enjoys his Blues Clues, Maisy, and Sesame Street videos, but nothing compares to Barney. Granddaddy watches the video so many times during the week that he is starting to have nightmares about pink dinosaurs. We have been able to take Chad to the mall, out to eat, to the grocery store, and other places. Unfortunately he can not be around other kids because of the risk of infection. Chad can not get any immunization shots during treatment because the vaccination is a live virus that could cause serious problems and delays in treatment. The biggest risks are curable childhood diseases such as chickenpox that are very contagious.

Lisa and Chad went back to the hospital today [February 14^th] to start the fourth round of treatment, Consolidation, which will last about two and a half months. We are very concerned with this round because Chad will receive a drug called ARA-C intravenously at a high dose. He has not had this drug administered this way before. Chad gets this drug today, tomorrow, and the eight and ninth day of this round of treatment. The doctor expects Chad to be neutropenic for a while, giving the Pseudomonis a chance to come back again. A couple of weeks after the ARA-C, the very high dose Methotrexate will be given again. These two drugs are very powerful and have bad side effects. However, Chad is going into this round very healthy and hopefully he will respond just a well as he has the past two rounds.

We are getting our pictures put on disk this week and should have many new pictures of Chad on the web page by next week.

Monday February 14^th to Monday February 21^th, 2000

Last week we assumed Chad’s blood count would be high enough to start the next round of therapy, but it was not. His ANC (Absolute Neutrophil Count) had to be at least 1000 and was 981, so we had another week of relaxation. Lisa and Chad are back at the doctor’s office today [Monday] and will likely be admitted into the hospital to start Consolidation. They will be there for at least two or three days and starting next week, we be in the hospital for a couple of weeks. The high dose ARA-C significantly suppresses the immune system and as a result the doctor wants to watch Chad’s condition closely.

Chad continues to devour grill cheese sandwiches and pudding, but this food tends to back him up a little. The constipation causes some discomfort (not to mention some serious gas), therefore we have had to increase the fiber in his diet. He has learned a bunch of new words and has started to pronounce a few. OK, pronouncing maybe a stretch, but Chad does say "ba" and "moo" when you ask him to say certain words that begin with a B (bumble bee for example) or when you ask him what sound a cow makes. I am convinced he knows that I am "dada."

Remember the hole in Chad’s side caused by the first fight with the pseudomonis. It has completely healed and there is very little scarring. The lost skin on his eyelid from the second bout with pseudomonis is slowly regenerating. On some pictures you will be able to see that his left eyelid is missing some skin, but it is barely noticeable. Chad’s eyelashes are growing back and he has a little bit of fuzz on his head. He is probably over 30 inches by now and weighs about 22 to 24 pounds. He has not started to walk and will not do so for several more months. This makes ensuring his catheter lines are not damaged much easier.

Several of our neighbors in the hospital have passed away over the last few weeks. Although Chad is doing great, hearing the news of other babies and children losing their battles with this dreadful disease is difficult. It is hard to keep my composure while typing this update and thinking about the reality of our situation despite our progress. However, our optimism continues to grow and we are enjoying every minute we have together. I recommend everyone else do the same.

The pictures will be ready next week. I will update the Web Page every week on Monday morning on the way to the North Pole, I mean Wisconsin. Pretty soon I will have a change of environment, including time in Massachusetts, Georgia, Delaware, Alabama, and a couple of other states. The bright side of all this travelling is that in two years (when Chad finishes therapy), I will have racked up enough frequent flyer miles for us to stay free at Disneyworld for most of 2002.

Be back soon!!

Monday February 21^th to Monday February 28^th, 2000

Lisa and Chad are back in the hospital today [Monday] and will probably be there for the next several weeks. The next dose of ARA-C given Monday and Tuesday will make Chad neutropenic and he will likely not recover for a couple of weeks. Hopefully the pseudomonis stays away, otherwise we could be in for some serious trouble.

 

Monday February 28^th to Monday March 13^th, 2000

The past two weeks had some anxious moments. Chad did become neutropenic a week or so ago and has been in the hospital with Lisa since Monday February 28^th. Things were going smooth until Friday night, March 3^rd. Chad’s ANC was zero, putting him at serious risk of infection. However, he did not appear to feel sick or fatigued, so we thought despite him having no ability to fight any infection, he was still OK. He had not left the hospital room since February 28^th therefore had not been exposed to anything outside the room, which minimized his chances of acquiring an airborne or communicable virus or bacteria. Unfortunately when you are very neutropenic (ANC of zero), the infection typically is caused by something from inside the body, not the outside.

Chad’s body temperature began to rise at about 8pm on Friday March 3^rd. His body temperature is usually around 97.5 degrees Fahrenheit when measured underneath his arm (in the armpit). Within a couple of hours, Chad’s temperature climbed to almost 105 degrees. He was crying, shivering, shaking, and had a scared look on his face. This was the highest temperature he has had in the past several months. The nurses reacted very quickly, called the doctor, and we were able to get control of the situation. We gave Chad some Tylenol (go McNeil Consumer Products!!!), cooled him off with some warm towels, started several antibiotics, and just held him until eventually his temperature started to fall. By 2am, Chad was asleep and by the next morning, his temperature was back to normal. During this ordeal, Chad’s blood was drawn and tested to determine what type of bacteria or virus, if any, caused the fever. The results revealed … no not the pseudomonis this time, but his best friend Ecoli. Yes, Chad’s body was invaded by a strain of Ecoli. This is not the Ecoli that is typically in the news. This Ecoli tends to avoid the media spotlight and just show up when someone’s immune system is depressed. Fortunately, the antibiotics killed the Ecoli quickly and we have not had a problem with it since that night.

Chad is getting smarter and smarter everyday. We now have to spell out certain words instead of saying them because if he hears the word, he will go nuts. For example, Chad loves potato chips (I feed him some potato chips, despite Lisa’s stern objection, thinking it would be a one-time event. We now have a Frito-Lay truck making daily shipments to the hospital room. Mom is not very happy with Dad). If anyone says the word chips, Chad immediately expects someone to feed him some and if you don’t, he begins to scream at everyone in the room. Needless to say, he is getting a little spoiled. So now we have to spell the word chips instead of saying, otherwise Chad will go into a tirade.

Chad’s white blood count should recover in the next few days. He was recovering the day of the fever spike, but the fever used up the white blood cells he was making and has slowed down the recovery process. Once his ANC reaches 750 and his platelets hit 75,000, we will finish up the fourth round, Consolidation, with two very high doses of Methotrexate. We do not expect any complications with the Methotrexate. Chad has had this drug several times before with no major issues. After the fourth round we enter the Maintenance stages of therapy which will last a year and a half. These rounds are much less intense and require infrequent hospital stays.

It is about 2am on Morning morning. I have just arrived at the Atlanta Hilton (from Texas) and in a few hours will travel 2 hours by car to a plant in the middle of Georgia. Got to go!

Be back in a week or two with an update. Yeah right!!

Monday March 13^th to Monday April 17^th, 2000

Well everyone, we apologize for the extensive delay in updating the Web Page. Overall, Chad is doing great and has had no major complications over the past five weeks. He finally recovered from the High Dose ARC, which caused him to be neutropenic for several weeks, allowing the Ecoli to attack his body. The Ecoli has not come back and Chad has not had any fever spikes over the past five weeks. After Chad recovered from the ARC, he went home for a couple of weeks. He and Lisa then went back into the hospital for the first dose of Methotrexate required for this fourth round of treatment (Consolidation). As expected, Chad did not have any significant problems with the Methotrexate and they left the hospital after a few days. The following Monday Chad received his spinal injection of chemo at the doctor’s office, which has never really caused Chad any complications. On Monday April 10^th, Chad and Lisa went into the hospital for the final dose of Very High Dose Methotrexate for both this round and the entire regimen of treatment. Again, no complications other than some mouthsores and diarrhea. Today is the final dose of chemo for the fourth round, which is another spinal injection of chemo. Chad will be home today and is scheduled to go back into the hospital only a couple more times over the next year. We now enter the maintenance phase(s) of treatment, which will last about a year to a year and a half. He will visit the doctor at least one a month and at times, he will have to go every week.

The last two phases of treatment are maintenance phases: Intense Maintenance and Maintenance. Chad now enters the Intense Maintenance phase, which lasts about 70 days. However, we repeat this phase twice, which extends the total Intense Maintenance time to 210 days. This phase is much less intense than the first four phases. Chad will receive most of the same medicines as before, but in much lower doses. He will get Methotrexate orally instead of through the IV. He will restart the Decadron, which will also be given orally. A few other drugs will be given either orally and pushed through his catheter, but all these drugs he has seen before. There is one new drug that he will get, but we do not expect any problems with it. The last week of each Intense Maintenance phase, Chad will have to enter the hospital for doses of Cytoxine and VP-16. He has had these drugs several times before and had no complications. The sixth and final phase of treatment, Maintenance, lasts only a couple of months. Add up all the time for these two phases (Intense Maintenance and Maintenance), and we should be done in less than a year. However, complications could arise that delay treatment and some time is allowed between the phases. We expect to be done within a year and a half.

Enough with the treatment stuff. Let’s talk about mom and baby.

Chad has grown to dislike the hospital now. The beeping of the IV monitor, all the noise outside of his room, and the constant flow of nurses and doctors in and out of the room annoys him. Also, he is feeling much better now and has become much more mobile. He does not like sitting or staying in one location, even when his videos are on. He wants to crawl, scoot, and yes, he has finally started to take some steps. Before April 15^th, Chad would walk around holding someone’s hands. But the other day, Lisa and I let him go and he held his balance and then took four or five steps. He still has trouble keeping his balance and staying on his feet, but each time he tries to walk he takes a couple more steps and falls down. Chad thinks it is funny when he falls on his butt. Lisa and I are in big trouble once he starts walking and running. He will be impossible to catch.

Because the treatment is less intense now, Chad’s hair has started growing back. He now has eyelashes and eyebrows and has some fuzz on his head. We do not expect him to lose his hair during Intense Maintenance and Maintenance, so we should have some pictures of hairy kid soon. Chad is very picky eater. His diet is essentially cheese sandwiches, bananas, chicken nuggets, Cheerios, some vegetables, and PediaSure (a delicious formula that is just like a NutraSlim shake). Most of the time, Chad sleeps soundly but either Lisa or I have to be next to him. Chad loves cuddling with mama. When I check on the two of them during naps, their noses are usually touching. Speaking of mama, she is also doing well. Chad keeps her very busy, especially since Lisa still has to do Catheter cleanings, administer medicines and take Chad to the doctor, on top of the normal demands of a 1 ½ year old. My parents are very supportive and Lisa’s parents and sister also come by the house to help. Now that Chad is feeling better and is not neutropenic, Lisa is able to take Chad outside in public places more often. A family trip to San Antonio Zoo will be coming shortly.

Be back with more details in a week (maybe)

Monday April 17^th to Monday May 15^th , 2000

It has been an exciting few weeks. Chad recovered from the last drugs given in the fourth phase of treatment. We had a couple weeks off before we would have to begin the next phase, Intensified Maintenance. Nothing much medically happened during those couple of weeks. Chad is walking all over the place and has started to sound-out a couple of words ("da-da", "bla" for Blues Clues, "bubl" for bubbles, and any other word that starts with a "b"). His blood count remained good and he has not needed any transfusions.

We started Intensified Maintenance on the 1^st of May. Chad received several medications, most of which he has seen before. However, one drug, Decadron, appeared to have made Chad feel bad this time and also made him a little moody. Decadron is a cancer-fighting steroid and is given orally. He started eating and drinking less once he started getting the Decadron. We discovered that Chad’s weight (21 pounds) is in the 5 percentile for his size and many people say he looks "small". Our stomach doctor recommended that we start Chad on a feeding tube immediately. We would pump PediSure (the stuff he drinks now) into his stomach three times a week during the night. He needs at least 5 cans of PediSure a day. He only drinks 3 to 4 cans a day. However Lisa, our oncologist, and I decided to wait a week or so and give Chad a chance to recover from the first dose given in Intensified Maintenance. Chad did start to gain some weight, but then a cold virus began to spread around the house.

My dad contracted a cold and Chad quickly got sick. Over the past few days, Chad has had a very running nose and a sore throat. On Saturday May 13^th, we brought Chad to the emergency room because he had a fever of 102 degrees. He also was not eating or drinking much, which may cause dehydration. The emergency room doctor determined that Chad did have a cold virus and that his blood count looked very good (helps fight the virus). We were sent home and directed to closely monitor Chad’s condition, ensuring that he drank plenty of fluids.

By Sunday afternoon, Chad’s sore throat must have worsened because he refused to drink anything. Lisa brought Chad to the emergency room again because he looked very lethargic and tired, which is a sign of dehydration. The chemistry test on Chad’s blood showed a low level of carbon dioxide, suggesting Chad was indeed dehydrated. The ER nurse gave Chad a bolus (a quick dose) of IV fluids through his catheter. This made Chad feel much better and they went home shortly after receiving the IV fluids.

Be back with pictures!!

Monday May 15^th to Monday June 12^th, 2000

Sorry it has been a while since we have updated everyone. Chuck has found it hard to write while working on the road and his weekends are busy with family stuff. So we have decided that I (Lisa) will be responsible for the web page. I am chattier anyway. Well our life in Phase 5, Intensified Maintenance, has been not returned to normalcy as we had expected. We started off okay for the first couple of weeks out the hospital. Our schedule for Intensified Maintenance is as follows: Total time is 72 days repeated 3 times. The first week Chad takes Dexamethasone, a steroid given three time a day. This is a pill that I have to crush each time and mix with medicine syrup. He also gets a push of Vincristine, a chemotherapy drug, into his catheter line and ARA-C, a chemotherapy drug injected into his spine. Additionally, Chad gets a deep muscle shot of Methotrexate and takes 6-MP orally, both chemotherapy drugs. Now this sounds like a lot but all this happens on Monday in the Doctor’s office. The only things that continue are the Dexamethasone, given every day for 5 days at the beginning and middle of the Intensified Maintenance, and the 6-MP, given at bedtime every day. The days Chad gets the Dexamethasone is bit rough because the it causes Chad to feel a little nauseated and alters his moods. This is the only difficult time for the Intensified Maintenance phase.

Chad receives the deep muscle shot of Methotrexate in his leg for the next three weeks. That is all. On the 5^th week we have that busy week again like the first week followed by tow weeks of shots on Monday. The 8^th week we have to go in to the Doctor’s office every day for 3 hours to run two Chemotherapy drugs into his catheter lines. Chad will be on continuous fluids for this week meaning he will have something connected to his lines for 5 days straight. This will be interesting considering he is walking now. We will follow up this week with me giving Chad shots in his leg for a few days. We will repeat this 72-day period tow more times and then begin Phase 6, Maintenance. Now I know this sounds like a lot but in the big picture it is not as busy as in the past and his meds are not overwhelming the keep up with.

Now getting back to why life has not been as it should have during Intensified Maintenance. We made it through the first busy week of Intensified Maintenance managing Chad’s upset stomach with a strong nausea medicine called Zofran and putting up with his crankiness. As you may remember from earlier writing that we now live with Chuck’s parents. Well someone in the caught a cold. In the past this could have been deadly for Chad, but his round of Chemo is not as intense so he is holding on to some of his white blood cells that help fight off infections and viruses. Well this could was horrible and spread to all of us including Chad. With this cold Chad had a sore throat so he decided to stop eating and drinking. On May 13 we ended up in the ER because Chad spiked a fever and was acting too sick for just a cold. The ER doctors did blood cultures and sent us home with an antibiotic. The next day Chad was still not drinking and we ended up in the again because Chad was just not acting right. Sure enough he was borderline dehydrated. They gave him about 2/3 of a soda can of normal saline pumped in through his lines. He felt better immediately. Now we just had to fight the cold, we thought.

The next week I got a call from Chad’s oncologist saying he thought there might be a problem with Chad’s tubules in his kidneys. His kidneys work properly filtering processing waste but they have a problem filtering proteins. This problem can be reversed with medicine and is really not something to be too worried about in the big picture. Now Chad takes a medicine that tastes like lemons 3 times a day to fix his tubules. We kept trying to fight this cold. Chad never gained an appetite for solid food but was drinking Pedisure, a formula for kids over one year old. In the meantime Chad started having very hard stools that were very painful for him. Chad’s doctor sent us to a stomach doctor for help. This doctor put us on two more medicines to help loosen Chad’s stools. This is important because Chad can not have any tears around his anus because of the risk of infection. The most alarming thing about this visit was that this doctor said Chad was only in the 5^th percentile for weight. This is understandable due to Chad’s lack of eating. The doctor wanted to immediately place Chad on a feeding tube 3 times a week during the night. This tube would be placed up his nose and pushed into his stomach by ME! I put my foot down and said NO. Our oncologist agreed with me to let Chad get to feel better and see if his appetite would come back. We are now on our 3^rd week of fighting this cold. Now Chad has a severe cough. The doctor placed Chad on another antibiotic, eyedrops for an eye infection and a cough medicine. Keep in mind we are still administering all the medicine required during Intensified Maintenance. The medicine schedule is becoming crazy to manage. I had to write everything down so I would not skip something. On June 3^rd Chuck and I took Chad to the ER (thank goodness everything happens on the weekend when Chuck is in town) because his cough was getting so bad it was making him choke. The ER staff did a x-ray and found that Chad had mild walking pneumonia in one lung. This is a serious condition for Chad but we caught it early so it should have been manageable. The ER staff have Chad a push of antibiotics into his lines and did blood cultures again.

On Monday we sent into our oncologist’s office for Chad’s weekly shoot and he said we would call a respiratory doctor on Friday if Chad was still coughing. Well Monday night I called the doctor and said Chad’s coughing was still very severe. He said to sit in the bathroom with Chad while running a steamy shower and to use a cool mist humidifier. On Tuesday morning the doctor called to see how Chad was doing and I said he was still coughing and I was looking forward to this time of "normalcy" he kept talking about. He said he was going to call the respiratory doctor immediately. The respiratory doctor decided he could most effectively treat Chad if he was admitted into the hospital. So Chad and I spent Tuesday, Wednesday and part of Thursday in the hospital. This stay in the hospital was the best thing for Chad. While in the hospital Chad received breathing treatments every 3 hours around the clock. This helped to open his airways and break up any fluids. We also found out that Chad’s immunoglobulins were low. This is part of the blood that sends the signal to while blood cells to come fight infection. This may be the reason why Chad has been fighting this could for a few weeks. During this stay Chad started to feel so good that his appetite came back. I consider this a miracle. I can’t tell you the anguish we have had with this eating problem especially facing the possibility of a feeding tube. So we got out of the hospital on Thursday and since then Chad has been a new child.

I can not remember when we have had such a good weekend. Chad is only taking 2 medicines, the one for his tubules and the 6-MP chemo drug. We have to do a nose spray (Flonase) and at-home breathing treatments a few times a day. Chad is handling these treatments well. So as you can see this has been a busy month. I hope that we are finally headed for some normalcy. I just can’t express how wonderful Chad is feeling. If you saw him over the weekend you would not even think child was in the hospital a few days ago. I should tell you about some of the wonderful things that Chad is doing these days.

We mentioned he is walking. It is so nice to see him able to get around and do the things he wants to do. He says Dada and Granddada, apple, blue (he loves Blue’s Clues). He is still mooing like a cow, ba-ing like a sheep and now makes a funny pig sound. He performs the entire itsy bitsy spider song and rows his arms when someone sings row, row, row your boat. I mentioned he likes Blue’s Clues. He carries around his Blue’s Clues notebook and draws pictures. He also loves to dance. Any music gets his knees bending and his arms moving, especially to the oldies, Sesame Street, and Blue’s Clues music. Another cute thing he is doing now is placing his finger to his mouth doing the shhh sign. Whenever he sees the family dog laying down Chad makes the sign. If you tell Chad night-night or go to sleep, he will make the shhh sign, get his pillow and blanket, and then lie down. Chad had started eating in the hospital and is still eating and has decided that he likes his booster seat, so I think the high chair will be going out to the garage. Chad also loves to go out for walks and blow bubbles outside. We are thinking of getting him a playhouse with a slide for the backyard (he already has a swing).

Pictures are on the way and should be included in the next update. Wait until you see his hair. This round of Chemo is not as intense so his eyelashes, eyebrows, and hear have all grown back. The doctor does not think it will fall out. If you can believe it, I still have more to say. I think I’ll save some stories for next time. Thanks for all your prayers and good wishes.

Monday June 12^th to Sunday June 18^th, 2000

Our success with Chad’s eating last week came to an abrupt end Tuesday when his old habits came back and he started eating like a mouse again. He was drinking 4 to 5 cans of Pediasure now he is down to about 2. He also had decided his meals would consist of potato chips and water. Needless to say we are more than frustrated and have decided to approach Chad’s doctor about starting supplemental feedings via a feeding tube placed up his nose (and into his stomach) 3 times a week at night or running TPN (a nutritional supplement in an IV bag) every night. There are pluses and minuses to both, but neither is a favorable situation. Chad will also be starting a busy week of Chemotherapy. We will run chemo into his lines at the doctor’s office Monday through Friday. He has to be well hydrated so we will bring home a backpack with fluids connected to Chad. The fluids will run for 24 hours. This will be interesting having to carry his backpack around everywhere he moves. It will be a very active week.

Chad celebrated his 1½ birthday on Sunday June 18. I have copied a tradition a friend from Ithaca told me about -- celebrate your "half birthday". We did this last year and of course followed through this year. We celebrate with Chad every change we get. He received lots of Blue’s Clues stuff and Chuck & I brought him a playyard house that has climbing stairs and a slide. It is so nice to see him enjoy the outdoors. Other things that Chad is doing that are just too cute: You ask him "Where is the big boy?" and he points to himself.

Monday June 19^th to Sunday June 25^th, 2000

Well, this definitely was a very busy week, but for different reasons than I thought it would be. We started off at Dr. Lazarus’ office (Chad’s oncologist) on Monday. He has to check Chad’s blood every week to make sure his white and red counts are at levels safe enough to continue treatment. Chad’s white count was too low to start the new chemo for the week. This was going to be that treatment I mentioned last week that would continue for 5 days. It is not good to delay treatment, however sometimes the body needs a rest and Chad’s doctor seemed somewhat happy Chad would get a rest from the treatment. We will check again this Tuesday to see if the levels are high enough to begin. Chad’s white count might have been low because it seems he finally kicked the lingering cold. It is hard to say why it was low this week.

We dodged that bullet, but took another one right between the eyes. The feeding tube!! I mentioned to Dr. Lazarus that I finally was going to give in and start a feeding tube for Chad. Chad’s eating was too sporadic and he was losing some weight. What I thought was going to be 3 nights a week only wearing the tube at night turned into feeding 7 nights a week with Chad wearing the tube in his nose for 24 hours a day. Not to mention they eventually want me to insert the tube and prime the tubing with the fluid (just Pediasure). Then we have to sleep with an IV pole at the head of our bed suspending the fluid all night. This was all very overwhelming for me. Home health-care nurses came that Monday and put in the tube and quickly taught me how to prime the fluid tubing and how to work the pump. They also taught me how to listen to Chad’s belly for this obscure sound when air is blown via a syringe into the tubing that goes up his nose and into his belly. The reason that this is important is because if you don’t hear air in the belly the tube could be in his lungs. If liquid were pumped into his lungs, it would kill him. Needless to say this is no small undertaking.

I have made friends with one of the nurses from the hospital and she came over to make sure that I was doing okay the first night. Our biggest problem was finding a tape that would stick to Chad’s face when he got sweaty or started crying. Chad has not once tried to pull this tube out of his nose. He is such a good boy. He must instinctively know that it needs to be there. To be honest, this was one of the reasons I resisted using the feeding tube for so long. I thought for sure that he would pull it out. Anyway, my nurse friend Jennifer ended up staying the night the night with us the first day using the feeding tube just to ensure everything went alright while Chad was sleeping. She slept right in the bed with Chad and me. Everything went fine and I was ready for day number two. Again, the only problem we had was retaping Chad’s nose tap and face tape so that it would stick. Let me explain how the tube is taped.

The end of the tube is in his belly and comes out his nose. It is taped there so it will not move. Then the tube is taped to his cheek for support. The tube then goes over and down the back of his ear and goes into his shirt for the day and comes out at night for feeding. Jennifer got together with the other nurses and they came up with all these different tapes for Jennifer to bring over to the house and try. Jennifer finally found one that worked and we have been using it. We have had one thing come up that is a concern. Chad’s cheek got a little irritated form the tape. This skin break down could be a place for infection to occur when his counts are real low. We will have to watch this to make sure nothing happens. We are also in disagreement with the Gastointerologist (who recommended all of this) because he wants us to give only 2/3 of a can of Pediasure each night through the feeding tube. He wants to start off slow but has not given us a plan of when we will increase the amount. It may not be increased for 4 weeks. We think it should be much sooner. He thinks Chad will need this feeding tube on and off for six months. I still have many questions that need to be answered about all of this. So this week Chad has a follow-up appointment with his respiratory doctor. Then we are supposed to start his chemo (that was delayed last week) on Tuesday. So we will be in Dr. Lazarus’ office Tuesday through Saturday from 9am to 12pm. We have another very busy week ahead of us.

Finally to end with a cute thing about Chad. He is starting to try and say cheese. All that come out is a lot of SSSS. I am proud of this new sound. And just to let you know despite the tube in Chad’s nose, it does not keep us from having fun. On Sunday we took Chad to the San Antonio Zoo for the 1^st time. The biggest hits for him were the bears, ostrich, zebras, and the rhinos. We will get some zoo picture soon. This was also our 6^th wedding anniversary. Spending time with Chad at the zoo was the best gift we could have given ourselves.

 

Monday June 26^th to Sunday July 9^th, 2000

Things never seem to slow down at the Harthan household. We got ourselves into pretty good routine with Chad’s feeding tube. I finally started to change the nose tape that holds the tube in place without the assistance of my nurse friend Jennifer. Then it was time to start the chemo that had been delayed one week. We started on Tuesday and ended on Saturday. This chemo was administered as an outpatient at the doctor’s office. So we did not have to go into the hospital. The first day was the longest because before we could get started they ran 2 hours of fluid through Chad’s lines to make sure he was very hydrated. This chemo could cause damage to the bladder if it is not urinated out constantly. After the hydration they hooked up his chemo for 3 hours.

The doctor’s office has two rooms that are set up for extended stays. There is a bed for napping, a recliner, TV, and VCR. My mother-in-law went with us every day to the doctor’s office to help with extra hands. We spent most of our time watching Blue’s Clues videos. Think goodness for the videos. I always said I didn’t want Chad relying on the TV for something to do, but with our situation when he is hooked up to an IV pole and his play area is limited to a bed, the videos are a life saver.

What made this week extremely busy was that when we disconnected from the chemo IV Chad was hooked up to a backpack of fluid. This went on for 5 days, 24 hours a day. Now Chad is not the kind of kid who sits around at home. This meant someone had to carry his backpack and follow him around everywhere he went. This was exhausting. Thank goodness we live with my in-laws. We joked that we should have worn pedometers to see how much we walked.

Chad has so much energy. We would say to him "Are you sure you received chemo today and not pep pills?" Needless to say, the chemo did not slow us down. I would even pack-up Chad, his diaper bag and his backpack of fluids and take him to the grocery store. All our gear would just sit in the cart. He could go to the store because the chemo does not affect his immune system for about 7 days. Between the backpack of fluid and the tube in Chad’s nose, who knows what people thought? Of course, I could careless. Chad was happy to be out and about and that is all that matters.

Once we stopped the chemo and fluids it was time to jump-start Chad’s immune system with the steroid shots in his legs. So every day this past week I have been switching off legs and giving Chad his shots. The thought of puncturing Chad’s skin with a needle is of course not a pleasant one. But is has to be done and Nurse Lisa has done it before so I could do it again. I put a numbing cream on his fatty thigh and wrap SaranWrap around it. This is on for an hour and then his skin is ready for the shot. He does not feel the poke but the medicine does burn as it goes in. It takes just a few seconds to do this. Once we are done he stops crying and he is fine. He is a brave little boy.

We were told that this last round of chemo might make his hair fall out again. So far this has not happened yet. It probably would have started coming out if it were going to. This is the strongest chemo Chad will receive from here on out of if he doesn’t lose his hair now, he probably will not ever again. This make us feel a little more back to normal.

As far as the feeding tube goes, Chad has still not tried to remove the tube. He is such an angel. People have commented to me that they can’t believe that an 18 month old is disciplined enough to know not to pull it out. I proceed to tell them how special Chad is and that he must instinctively know that he needs the feeding tube. It is so cute when he has a itch on his nose he slowly puts is finger to his nose and tries to scratch it. We try to help him so that he does not loosen the tape. We have doubled the amount of food he is getting through his tube at night. I hook him up at 10pm and it runs until 9am. He receives about 11 oz. Hopefully this will help him gain and then maintain his weight. Last week’s weigh in he gained 7 oz. On Monday we go to the doctor again so hopefully we will see another increase.

Now to end with some of Chad’s latest cute moments. He has learned to back-up and sit down onto his toddler sofa. He has been working on this for a coupled weeks but he could never quite get his cheeks all the way back to sit down onto his toddler sofa. He has been working on this for a couple of weeks but he could never quite get his cheeks all the way back to sit down. He claps when he sits down properly. We call this little sofa his "thinking chair". All you Blue’s Clues fans will understand what this means. Another cute thing is that he has taking a liking to grape Popsicles. Except he is a lazy Popsicle eater. He sticks out his tongue and expects you to roll the Popsicle around on it. It is really funny to watch.

Monday July 10^th to Sunday July 16^th , 2000

This week was nice and quiet, which we all enjoyed. Chad did not receive any treatments, shots or new medicines. This was like a recovery week. I must have jinxed Chad’s hair last week because all of a sudden he started to loose his hair this week. It fell out over a couple of days. One night when Chuck called I told him Chad looks like George Castanza from Seinfeld. All his hair was gone in the front but full in the back. The next day though it was all gone. We took a few trips to the grocery store, went to the mall a couple times and even out to dinner for Mexican food. Chad loves to get out. This next week will be really busy for us. If you remember a few weeks ago I explained that each phase repeats itself 3 times each lasting 7 weeks. In two weeks we start all over with phase two. Now to end with a cut tidbit. As I have said we are bulking Chad up with a feeding tube. Well now Chad’s legs are getting chubby. Chad loves to squeeze his chubby legs. It is so funny to catch him squeezing his fat thighs.  

 

Monday July 17^th to Sunday August 6^th , 2000

We started our 2^nd phase of Round 5 with our busiest week, the week Chad gets chemo in his spine, in his leg, through his line and we do 5 days of a steroid. None of the chemo has much of an effect on Chad, however the steroid makes him feel very grumpy and very sick. We have been through this 2 other times so we know what to expect and what to do for Chad to make him feel better. After about 7 days Chad is pretty much back to his normal active self. Then we just resume our schedule with visiting the doctor once a week.

We had our weekly appointment with the oncologist, Chad received his shot in the leg of chemo and we were done for the weeek. We seemed just as busy having a fun week as we were during Chad’s sick week, which was a wonderful thing, being busy having fun. I get Chad out running lots of errands. He loves to be on the go.

The following week we had our normal oncology appointment and we also had an appointment with Chad’s stomach doctor. There was good news to report. Chad as gained 1.5 pounds since July 10^th. It seems like our nightly feeding must be working. We took our first out of town day trip with Chad this weekend. We went to Austin, which is about 90 miles away from San Antonio, to visit two sets of friends from Cornell. Chad had a great time exploring the stairs in our friend’s house and also enjoyed visiting with a 5-month-old baby girl that was there. Chad was very gentle. This was a big milestone for us, taking Chad out of town. I did ask the doctor for permission and he said Chad is absolutely well enough to go on a short trip. We were all happy to get w away together.

Monday August 7^th to Sunday August 13^th, 2000

This was another good week at the Harthan’s. We made our weekly trip to see Chad’s doctor for his shot and that was it for the week. There are some new things happening though. For the last couples weeks I have been discussing with Chad’s doctor that I didn’t feel his speech was coming along like it should. Chad comprehends everything you tell him and will act out a command such as throw your clothes in the hamper. However he is not verbally expressing himself like he should at this age. Chad’s doctor has decided that since he is feeling so good, that now would be a good time to start speed therapy. We are also going to have Chad evaluated for physical therapy to make sure his fine and gross motor skills are where they should be. Eventually we will also take him to a neuropsychiatrist to make sure all the connections are being made to his brain. He may be too young for this evaluation to be made now. The learning disabilities have more than likely been caused by the high doses of chemo that Chad has received. It is hard to say what the long-term effects of all this chemo will be. We knew that this could happen when Chad started treatment, but of course there was no alternative. Easter Seals will be coming out next week to get paperwork started and then Chad will be evaluated in a couple weekends. Easter Seals provides therapy for any child who has a disability under the age of three. They may do other things too. I will learn more as we go along. Easter Seals does not turn any child away, whether you have insurance or not, and they do not charge for their services. I am happy that we are starting this therapy so early. Hopefully we can get on top of things before he gets behind.

Here are some cute stories: We bought Chad a piano/keyboard that has a microphone attached and a little stool for him to sit on. He loves to play music. He gets so excited he looks likes Jerry Lee Lewis going crazy at the piano.

He especially likes the buttons that plug rock, jazz, or really any of the beats. Sometimes he just has to get up and dance and slap his knees. Another thing Chad likes is for Chuck to flip him upside down. Chuck puts Chad upside down and lets Chad’s legs fall over until they hit they the floor. He laughs during the entire flip. Another new thing Chad is doing is you tell him to hop like the bunnies and really hops all over the place. He also likes to walk back wards and side step through the house. This makes us a little nervous, but he is careful and we watch him like a hawk. IT is so much fun watching him play.

Monday August 14^th to Sunday September 3^rd, 2000

I must apologize for the lapse in updates but either we have been really busy with Chad’s treatments or we have been having two much fun to stop and write. A few weeks ago we had one of our busy weeks again. Chad was one the steroid Decadron for 5 days which makes him very moody and lethargic. He pretty much just wants to sit on my lap or lay with me in bed. He has a meltdown if I just go into the bathroom to wash may face. After 7 days from starting the medicine Chad is pretty much back to his old self. Then its back to having fun.

Chuck was off of work the week before Labor Day. The three of us had all kinds of fun together including Chad’s 1^st trip to SeaWorld. For those of you who don’t know, there is a SeaWorld here in San Antonio-we did not fly off to Florida. Every time Chad saw Shamu jump out of the water he screamed with excitement and clapped his hands. He had a wonderful time running all through the park. That night he slept like a rock, he was so exhausted.

That week we also had the Easter Seals evaluation of Chad. After sitting with 3 women observing him for 3 hours they found that he was slightly behind in his speech and needs a little help with his fine motor skills when it came to his attention span. They viewed these two items as "small" problems but they did make Chad quality for both speech therapy and occupational therapy. He will spend 45 minutes a week with each therapist on the days that I say fit into our schedules. I am really happy we jumped on top of this right away because it can’t hurt. I am excited to get tips about how I can help Chad when the therapists are not around. They have already given us some ideas that seem to make a difference.

Next week we have another busy week but at least this time he will not feel sick. He gets chemo in the doctor’s office on Tuesday through Saturday with continuous fluids running when we are at home. He must have the fluids running because one of the drugs could cause damage to his kidneys if the drug stays to long in his kidneys. This is when we have to carry around a backpack of fluid with Chad everywhere he goes. There has to be one person in the house holding Chad’s pack and ready to move with him at all times. This is what makes the week so busy. Chad never likes to sit. He is always moving around the house looking for trouble.

Now it’s time for me to share one of Chad’s cute moments. Chad’s grandpa Harthan makes Chad grilled cheese sandwiches all the time. One night Chad same out of the kitchen carrying the square pan that the sandwiches are made on and says "chssssssss" with lots of saliva rolling around in his cheeks. He carried the pan right to his grandpa and insisted it was time for a grilled cheese sandwich. It was really cut seeing him communicate what he wanted.

Monday September 4^th to Sunday September 10^th, 2000

This past week was just as busy for us as I had anticipated. Chad went to the doctor on Tuesday and received 2 hours of IV hydration fluids then 3 hours of chemo. After the chemo is completed we connect him to a bag of hydration fluids that fit into a fanny pack. The chemo does not make him bad because we give him around-the-clock anti-nausea medicine. So picture a very active little guy running around the house connected to a fanny pack with someone chasing him at all times holding the fanny pack. Luckily Chuck’s mom took off the entire week of work to help me. I am sure I would have starved or had my bladder explode if I didn’t have help. There was hardly any time for the essentials!

Now that we are done with this week of chemo, Chad’s counts will start to go down. To jump-start his white blood cells I am giving him shots in his legs for the next 10 days. I have done this plenty of time before but I still don’t like doing it. One other thing to mention, this week on September 7 we made it to a milestone – Chad was diagnosed one year ago with Leukemia. It truly is a miracle that he is with us today. The nurse at Chad’s doctor’s office said that he is the Doctor’s miracle baby. She said with God’s help, a great doctor, and wonderful parenting she is convinced that this team has pulled him through. Of course we are very encouraged by this milestone, but unfortunately we still can not relax. It will not be until March 2001 that we can start to breathe easier. That will be the 18-month point and usually if you are going to relapse it will be before 18 months. So continue to send your prayers our way because we are not out of the woods.

Now for Chad’s cute moment. Chad loves to ride on elevators. When the doors open he screams with joy and claps his hands. He has learned to say "up" when we get to the elevator doors. Now when we leave the doctor’s office he runs down the hall to the elevator saying "up, up, up …" Even though we are going down he is saying up. As soon as the doors open he screams and tells all the other passenger "up". It really is funny to watch him get so excited about going "up!"

 

Monday September 11^th to Sunday September 17^th, 2000

This was the week after Chad received his chemo so we expected his white count would be going down. I continued to give him shots in his legs to help boost his immune system. The week was going OK but it seemed like Chad was more clingy and needed my attention more than usual. Well, Friday I noticed Chad seemed a little warm and sure enough he had a temperature of 100.7^o. Anything over 100.5^o is a reason to call the doctor. Since it was 6pm and after office hours, Chad’s doctor sent us to the emergency room. Because Chad’s white count was low, we do not have to wait to be seen. They took us back right away and did blood cultures from both of Chad’s catheter lines and also a urine test. What took the longest was waiting for Chad to produce enough urine for a culture. Finally they finished up all of the culture collecting and gave Chad a broad-spectrum antibiotic just in case there was any bacteria trying to take advantage of Chad’s low blood counts. The good news: nothing was found from Chad’s blood tests immediately and cultures can take up to 72 hours to show anything so they told us to keep a close eye on Chad and to keep his temp under control.

After 5 hours in the ER we came home and went straight to bed. The night was busy though. We had to give Chad Motrin and Tylenol alternating every 3 hours. On Saturday, we started giving Chad an antibiotic and putting pedialyte into his feeding tube to keep him hydrated. Through Saturday night the antibiotic gave Chad very loose stools so Sunday morning we had to give him some Imodium to stop the diarrhea. We also started giving pedialyte into his tube every hour. Needless to say we became very busy again with medicine. We were not expecting this because last time Chad sailed through this phase. Chad must have picked up a bug somehow.

You may be wondering how Chad’s spirits are doing. Despite everything going on, Chad still gets plays and is in a pretty good mood. He takes all of this in stride without complaining. He is such a good boy. Here are two of Chad’s latest cute moments. He and his Daddy like play with Chad’s small football. Chad has started to say "hut" when he wants Chuck to bend over and hike the ball to him. It’s really funny to watch him get so excited to get the ball. Another funny thing is how Chad plays hide-and-go seek We tell him to hide and he thinks by placing his forehead against the wall no one can see him. We had a long laugh over this one too.

Monday September 18^th to Sunday September 24^th, 2000

This week Chad recovered from the bug he caught last week when his blood counts were low. His doctor thinks it was a virus so we had to let it just take its course. Chad finally perked up by Friday. It was a good thing he began to feel better because we had a big day planned Saturday. Around the nation people walked Saturday evening in the "Light the Night" charity walk to raise money to help find a cure for leukemia and other cancers of the lymph system. We took part in the San Antonio walk. My sister Kim had her sorority participate and they raised over $1000. Chad had quite a contingency walking in his honor. There were over 30 people walking with Chad’s picture on their T-shirts. Chad loved all the illuminated balloons and had fun dancing in the park when the walk was over.

So what started out as a junky week ended up with a nice weekend for Chad. On Monday we start the third cycle/repeat of Chad’s 5^th round of chemo. This is when we have 7 weeks of treatment ending with me giving Chad the shots in his legs. Once we finish round 5 Chad will begin the last round which is the lightest round of chemo he will receive. He will be on round 6 until he finishes treatment next September. We can’t wait to get to round 6.

We have found out that Chad loves watching the Olympics. His favorites events are diving, gymnastics, and volleyball. He would actually sit up in bed and clap his hands when the gymnasts would do their flips. He also like it when the women would spike the volleyball. Who knows, maybe we have a future Olympian among us!

Monday September 25^th to Sunday October 1^st, 2000

This week Chad started the last cycle of his 5^th round of chemo. Just as in the last 2 cycles, he received chemo in his spine, chemo in his leg via a shot, chemo through his catheter and the doctor retrieved spinal fluid from his spine. All of this is done while Chad is sedated for about 15 minutes. Chad’s doctor is one of the few oncologists in the US who sedates his patients while doing the spinal procedures. He has told me that when he did his residency he vowed he would always sedate his patients when doing spinals or bone marrow retrievals. At another hospital here in town they have a soundproof room where they take the person, hold them down, and do the punctures. Imagine the psychological trauma this would cause. Chad’s doctor performs the procedure in his office on an examining table. They have oxygen available and all the necessary equipment needed. I stay in the room and watch the procedure. There was only one time when I felt faint and actually had to sit down and put my head between my knees to avoid fainting. I did not eat that morning and seeing the doctor poke Chad’s back a couple of times was a little too much for me that morning. The nurses at the hospital told me that only pediatric cancer patients are sedated and that adults have only local anesthesia.

Chad also started a steroid that lasted for 5 days. This is the medication that makes him feel the worst during this phase. For the week he pretty much just wants to sit on my lap and watch videos. He is very clingy and can’t stand to have me away from his side. Chuck come in on Thursday night this week which was great because Chuck is able to comfort him just as I can. Chad does not cuddle up to my in-laws during this week. By Sunday Chad has the steroid out of his system and was anxious to go to the mall, Baskin Robins, and put up the Halloween decorations.

I am amazed at how Chad knows his directions. We came to an intersection that goes to the mall and he points and gets excited. He gets excited about the mall because he likes to ride the elevators. He says "up, up, up" when he sees the mall. Needless to say, we go to the mall a lot. What a hardship for a shopper like me!!!

 

Monday October 2^nd to Sunday October 15^th, 2000

The last two weeks have been part of the 3 week stretch of time that Chad feels good.  We have had a lot of fun and been very busy.  Chad goes to his doctor on Mondays for his weekly chemo shot in the leg.  On Tuesday his speech therapist comes to the house and on Wednesday the occupational therapist comes to the house.  Thank goodness I don’t have to work – I don’t know where I would fit it in.  Believe it or not but Chad loves to go to the doctor even thought he gets his shot.  He is such a strong little guy.  He only cries for about 5 minutes.  I do put a numbing cream on his thigh an hour before his appoint to help ease the pain.  I think the worse part for his is being held down.

The speed therapist seems to think Chad is only slightly behind.  Just like he walked late, he will probably talk late too.  After all being laid up in bed for a good part of 6 months without much teaching going on, it is hard to expect him to be right on target. She said Chad seems to comprehend very well and does a good job following directions.  These are very important as we move forward teaching him sounds and words.

The occupational therapist is also pleased with Chad.  She is amazed that he does not tire easily as some of he other Leukemia patients do.  Chad never slows down!  This week we will be making T-shirts with Chad’s hand prints painted on.  Some how the handprints are going to look like ghosts.  I have never done anything like this with Chad but the therapist said he should be able to handle the activity.  Here and I will probably end up with more pain on us than the T-shirt. 

Some of the fun things we have done over the last two weeks were going to a pumpkin patch, going to the zoo, and picking out Chad’s Halloween costume.  Chad loved running around the pumpkin patch.  He would go around wanting to rub every pumpkin.  He also liked to sit on them.  The ones with taller stems were not too comfortable.  We end up bringing home a big gat one to carve, and medium size one he could sit on with a short stem and a little baby pumpkin he can carry around.  Chad also liked his trip to the zoo.  I must say though he was more interested in the kids running around and eating his popcorn than the animals.  He likes watching the birds and squirrels, which he can do in our backyard.  Oh well.

I will give you a hint about what Chad is going to be for Halloween this year.  The outfit is red, blue, and yellow and he wears a cape.  We will be sure to put pictures on the web for you.  Here’s one of the cute things Chad is doing these days.  He loves to play with our plastic spatula.  He slides it under things and flips them over.  We laugh about this because Chad could restock the shelves at Toys-R-Us with the toys he has in his room.  But instead of playing with them he chooses to run around all day with a spatula.  What ever makes him happy.  We actually think it’s quite creative when he starts stacking different things up and flipping them into a pile.  Its really great to watch him having so much fun.  A year ago at this time it was a much difference picture.

 

Monday October 16^th to Sunday October 22^nd, 2000

This has been another good week for Chad.  We kept very busy.  Monday he had his doctor’s appointment; Wednesday the occupational therapist came to the house; and Thursday the speech therapist came over.  After his regular doctor’s appointment on Monday Chad had a visit with his stomach doctor.  He wanted to see how Chad was doing with his nose tube.  It has been nearly 4 months since we started using the nose tube for feeding Chad at night.  Since his appetite is not really increasing to sustain his weight, we need to continue the feedings.  We will more than likely be moving towards putting a Feeding tube into his stomach.  Everyone tells me that the stomach tube is very easy to use and low maintenance for me.  I will have to clean it every day but just with peroxide.  In the scheme of things this is low maintenance.  On Monday we will make the decision with his oncologist when would be the best timing for this minor surgery.  It will be nice not to have to endure the changing of the tape used to keep the nose tube from coming out.  He screams during the whole change.  There is not any pain, just discomfort with the tube moving in his nose and us holding him down.  I think holding him down is what bothers him most.

One of Chad’s cute moments over the weekend was when he started singing into the microphone attached to his piano keyboard.  He loves listening and playing music.  I guess he will start singing during his piano playing concerts.

Monday October 17^th to Sunday October 29^th, 2000

We started the week off by going to Chad’s weekly Monday appointment.  Chad was supposed to get chemo into his spine, into his leg, and into his catheter lines.  And then we were going to start the oral medicine Decadron, the steroid, for 5 days, 3 times a day.  This is the same routine we have done 5 times before; this was to be the 6^th and final week.  Well, after they drew Chad’s blood and checked it in the cell counting machine, the doctor found that Chad’s white count was too low to begin this round of Chemo. 

We have been delayed before a couple of time before with other treatments, but we have never been delayed with this one, so I was a bit surprised.  The doctor felt that Chad’s blood was being affected by the daily chemo medicine he takes and the weekly chemo shot he gets in his legs.  This is not too serious but the doctor took him off the chemo medicine for the week and did not give him the shot in the leg.  He did this to give Chad’s blood a week to recover and be ready for the chemo in the spine and the steroid medicine.

We were careful this week about going out in public and avoid germs.  We hope to get started with this treatment on Monday.  Unfortunately the steroid medicine makes Chad fell really out of it.  We have handled it 5 times before.  I am actually looking forward to this treatment because it will be the last time Chad gets this medicine. We found out the stomach doctor does not want to place the stomach feeding tube while Chad is on the steroid or for 1 week after he is off the steroid, so it looks like he won’t be getting that placed in for another two weeks.

Chad’s cute thing for the week is hunting for acorns in our front yard.  It is so nice to watch him searching throughout the yard trying to find acorns.  Not too many have fallen yet so it is a bit of a challenge.  His little face lights up when he finally finds ones.  He carries it around and shows everyone his treasure.

Monday October 23^rd to Sunday November 5^th, 2000

This week we were again delayed in starting the 6^th and final week of Chad receiving the steroid Decadron.  The doctor told me to withhold the chemo medicine again and Chad did not receive his chemo shot in the leg.  Chad’s doctor told us not to worry that Chad’s white count had still not recovered but he did say that if it did not recover for a third week he will want to do a bone marrow aspiration so he can look at Chad’s marrow and make sure that his body has not relapsed.  Well, this was very concerning and it has been hard not to worry this week.  There are some children who delay up to 5 weeks before they can continue with their treatments.  We have only delayed once before for 1 week so this is new to us.  A week like this pulls us back to reality and makes us remember how fragile Chad is and how special every day is that we have with him.

This brings to a request for prayers for a family that we have become close to.  The Harwerth family, Curt, Irene and their son Gunnar have been fighting Gunnar’s cancer for over a year and a half.  Gunnar is only 3 years old and had a very rare brain tumor (only 60 in US have every been diagnosed with this aggressive tumor) that was removed over a year ago.  This past weekend their worst fears came true with the news that the cancer cells have spread into Gunnar’s spinal fluid. Their hopes were that when they removed the tumor they got all the cancer and therefore he would be cancer free.  With treatment he should have been able to recover.  This is a very difficult situation for Gunnar’s doctor and his family because there is not a protocol to follow on what treatment Gunnar should receive due to rarity of Gunnar’s tumor.  There are not very many people who have undergone treatment for this rare tumor. 

Please pray for Gunnar that he is able to overcome this setback and recover successfully.  I do not usually make these kinds of requests, but I know you are all praying for Chad and I thought Gunnar could use your prayers too.  Thank you.

Monday November 6^th to Sunday November 19^th, 2000

The last 3 weeks have been quite a roller coaster ride.  I have finally found the time to update you all.  It started off with us going to Chad’s Monday doctor appointment and finding out that his with count had still not recovered.  This meant that Chad’s doctor wanted to do a bone marrow aspiration to see if something funny was going on inside Chad’s marrow.  That day Chad also received IV immune globulins that help to boost Chad’s immune system.  It takes 4 hours to administer the IVIG so we were still in the doctor’s office when the doctor took time to look at Chad’s marrow.  He told us that the marrow looked good.  We were relieved. 

Everything was rolling along fine until Thursday when I changed Chad’s catheter dressing and found that the site looked slightly unusual.  I also changed the nose tape that holds Chad’s feeding tube in place.  When I took off the tape I found a sore with blood around it.  I immediately pulled the tube out of his nose.  I was scared because the sore looked like the sore that had developed on Chad’s eyelid where he lost a piece of his lid.  I panicked thinking he was going to lose the tip of his nose.  I called his doctor about his line site and his nose and he told me not to be too worried because although Chad’s white count was low it was still high enough to fight infections.  He told me to come in the next day for him to take at Chad’s line site and to call the stomach doctor and tell him about Chad’s nose.  I called the stomach doctor and they wanted to see Chad right away. 

The stomach doctor remembered seeing Chad’s eye problem and wanted to make sure the same thing wasn’t happening to his nose.  He said he thought it was just a nose sore but did put Chad on an antibiotic just in case it was an infection.  Unfortunately now that Chad’s feeding tube was pulled out he had to take the antibiotic plus all his other medicines by mouth.  The antibiotic tasted so horrible that it make Chad throw up.  I could not get Chad to keep any of the medicine down.  This worried me because he needed the antibiotic to fight the infection.  The next day, Friday, Chad and I went to see Chad’s oncologist so that he could look at his catheter line site and see the nose sore.  He did not think that it was too serious but did want to keep fighting it with antibiotics.  The doctor unloaded a huge bombshell though.

The doctor explained that he took Chad’s marrow from the aspiration on Monday over to the hospital to look at it n their microscopes.  He said that with further review it looked like there were premature cells present that could be leukemia cells.  There are always a small percent of these cells in the blood: 0 – 5% is okay, 5 – 20% is concerning, over 20% is considered a relapse.  He never used the word relapse but he was concerned because there were 11% of these cells present in Chad’s blood.  The doctor kept telling me that over these last 4 weeks when Chad’s white count was not recovering, he did not see any leukemia cells in the blood draws he does every week.  Usually if it is the leukemia, it takes over the blood cells with a vengeance therefore his blood tests should not have looked so good if it was a relapse.  A relapse would mean we would have to move towards a bone marrow transplant.  A bone marrow transplant can either go very good or very bad.  Very bad usually is fatal.  The doctor told us to come in on Monday for our normal appointment to see if Chad’s counts would have recovered.  Needless to say, we were worried sick the whole weekend.

On top of everything else someone brought a cold into the house so Chad’s throat got sore and he refused to drink his milk and take his medicine because he did not want to swallow.  The only thing he would drink was water.  Chad started to run a fever on Sunday but it was not serious enough for us to go to the emergency room like we usually do.  By the time we got to the doctor’s office on Monday I was on the brink of tears.  It was such a stressful weekend worrying about a relapse and that Chad was not taking his antibiotic and not eating.  Chuck did not go to work that morning so that he could go to the doctor’s appointment with me.  We felt we had to both be present for such an important appointment.

When the doctor came in with a huge smile on his face we knew it was good news.  Chad’s white count had recovered.  After 4 weeks of wondering why Chad’s counts were not recovering, we did not have to worry anymore.  If it were a relapse, Chad’s white count would not have recovered.  The doctor had told us that sometimes it just takes a while for it to recover.  This was very scary because it had never happened to Chad before.  The doctor was concerned though that Chad had not been taking his antibiotic and not eating.  He had lost weight since the visit last week.  The doctor decided to admit Chad into the hospital to receive IV antibiotics and 24-hour nutrition via another feeding tube in his nose.  I was actually relieved because there was too much pressure on us at home to get him to eat and take his medications.

So Chad was admitted into the hospital that Monday.  He received IV antibiotics every 12 hours and 24-hour continuous nutrition.  It took four of us to hold him down while they put a feeding tube into his good nostril.  Chad was such a good boy at the hospital.  He had to sit on the bed at all times since he was hooked up to an IV.  We played with cars on the bed and watched a lot of videos.  We also played catch.  Actually it was more like fetch.  We got home on Thursday.

Chad was pretty much back to his old self when we got home.  The doctor said we would finally be able to start his chemo again the following Monday.  It had been 4 weeks since he had received chemo.  The Monday of Thanksgiving week we went in for Chad’s Monday appointment.  Chad’s counts were high enough to start his chemo.  Chad received chemo in his spine, his catheter, and his leg.  The doctor also withdrew spinal fluid to check it make sure no leukemia cells are present.  We also started Decadron, the steroid that makes Chad feel awful for a week.  But this is the 6^th and final time he will ever have to take Decadron.  Chad did not feel very good on Thanksgiving, but at least we were home and all together.  My family came over to Chuck’s parents house and we had a nice dinner.  We truly had many things to be very thankful for.

Monday November 20^st to Sunday December 10^th, 2000

The last two weeks have been just as busy as the weeks before.  We just never seem to be able to catch our breadth lately.  We ended our week of Decadron on Friday and head off for Chad’s Monday appointment.  When they drew Chad’s blood, the white count came back very high.  I panicked when I saw the number.  If you remember a few weeks ago, I was worried because Chad’s white count was too low which could be a sign of a relapse.  Now his white count was very high which is good if they are all “normal” white cells.  But one sign of a relapse is a high white count that is made up of cancerous white cells.  The doctor told me not to worry because not only was Chad’s white count up but also so were his red blood and platelets.  This meant that the steroid, Decadron, did its job and prompted the cells to be made.  If Chad’s white count had been high and the red cells and platelets low, that would have suggested that the cancerous cells crowded out the red and platelets.  These are signs of relapse.  Of course I still worried but had to wait until the next Monday to see what Chad’s counts would be.

So we went back in to the doctor’s office on Monday again and this time Chad’s white cells were in normal range.  Finally, what a relief.  Another exciting thing this week was that Chad was scheduled for surgery to get a stomach feeding tube.  This stomach feeding tube looks kind of like the end of a beach ball where you blow it up.  It allows you to put medicine and feedings right into the stomach.  Everyone says that it is easy to clean and maintain and Chad would get used to it just like his catheter. 

So we went in Thursday morning for the procedure.  Chad received a medicine to put him to sleep.  The then doctor could do an endoscopy, a method to look at Chad’s esophagus and stomach.  He puts a camera with a light into Chad’s mouth, down his throat, and into his stomach.   The camera lights up the stomach wall???????????????.  WOW.  This is a minor surgery.  When he got in to Chad he noticed his esophagus was inflamed at the bottom and then saw a large hernia.  It turns out that Chad has a hernia where the esophagus and stomach meet.  He was probably born with it.  One in three of us has one of these hernias so it is very common and not life threatening.  However Chad’s very large which means he probably has been having acid reflux every time he eats.  So this, not the chemo, may be the reason why he is not eating.  I could not believe what the doctor was telling me.  Another thing we have to deal with. 

So the doctors did not put in the stomach tube because it could have irritated the hernia.  What they did was put a tube up Chad’s nose with a probe that dropped to where the stomach and esophagus meet.  This probe would measure the acid Chad had coming up.  We had to keep a log for 24 hours using a clock (stored in a fanny pack) that was at the other end of the tube.  Are you still with me?  The log tracked every time Chad ate, drank, sneezed, coughed, lied down, sat up, choked and vomited.  So we had to look at the tube clock and physically write down on a log sheet every time Chad did any of the above things.  Can you believe this?  Thank goodness it was only a 24-hour study. 

We went in the next day on Friday and the nurse took out the nose tube and sent us home.  The doctors with use this information from the study to justify whether Chad should have surgery to repair the hernia.  Since it is so big we will probably have the surgery.  The doctors explained that they would take the stomach muscle and twist it up around the esophagus, kind of like you twist a bread bag.  One of the most upsetting things about this is that we had to drop another NG tube down Chad’s nose for nourishment.  He absolutely hates this process and hates it when we have to change the nose tape every other day.  I thought we had seen the very last of these days.

Anyway, we are mentally drained these days and with Chad’s birthday and Christmas coming up, we are a little stressed.  So if you don’t get our Christmas card until next Easter you’ll know why.  The good thing is that Chuck has almost 3 weeks off from work.  Despite all of this, Chad is still a happy little guy and has bounced back from all the problems like a true champ.  He is truly an exceptional boy.

Monday December 11^th to Sunday December 17^th, 2000

This week Chad’s counts were good enough to start his 3^rd and last cycle of chemo in the 5^th phase.  We spent Mon-Fri at the doctor’s office for 3 hours in the morning getting Chad’s chemo.  When we left everyday we had to take home a fanny pack full of fluids connected to Chad’s catheter.  This fluid is very important because it keeps the chemo from settling in Chad’s organs and doing them harm.  So for 5 days we had to chase Chad around with his bag of fluids.  The anti-nausea medicine works so well that the chemo did not slow him down one bit.  We were excited because this was the final time Chad receives this high dose chemo.  As soon as the chemo ended, Lisa had to start giving Chad shots in the leg to boost his immune system.  Another milestone – these 10 shots were the last shots Chad would have to get.  The net week we have to be even more careful about germs because Chad’s counts will be going down due the chemo.

Monday December 18^th to Sunday December 24^th, 2000

Monday the 18^th was Chad’s 2^nd Birthday.  Chad had lots of fun at his birthday party.  He had a Mickey Mouse cake, lots of balloons and loved opening his gifts and cards.  The best gift of the night was the Fisher Price Garage.  Chad is all boy and loves his cars. 

On Tuesday we met with the surgeon that will be repairing Chad’s hernia and scheduled the surgery for January 2^nd.  The surgeon will also place in the peg (the stomach feeding tube).  The most exciting news of all – Chad will be getting a “port-a-cath” catheter.  The reason this is so exciting is because this catheter is inside Chad’s chest.  There are not any lines that hand out like they do now.  This means there will not be anymore dressing changes and I will not need to flush his lines every day like I do now.  This is a big step towards a little bit of normalcy.  Sticking a needle through the skin into the catheter accesses the catheter.  We will put numbing cream on Chad’s chest so he does not feel the poke.  The worst part will be holding him down.

The week was going along okay (remember Chad is neutropenic this week due to the chemo he got last week) until Thursday night when Chad started coughing uncontrollably.  We started breathing treatments with a nebulizer, puffs of Flovent (a steroid that opens the bronchials), and Flonase to stop any nasal drainage.  We went to the doctor on Friday and got an X-ray of Chad’s chest.  It showed that there was slight RSV, a respiratory infection, which can be deadly for babies and kids in Chad’s condition.  Luckily we caught it right away so we did not have to go into the hospital.  We just continued to faithfully do the breathing treatments.  Since RSV is a virus, there is not any medicine that we could give him to kill the RSV.

Monday December 25^th to Sunday December 31^st, 2000

Chad was recovering from his cough over the weekend so Christmas was a lot of fun.  Chad got a basketball hoop that he loves.  His is very good at making baskets.  He received more cars, puzzles and books.  Chad is not lacking when it comes to toys.  The week continued along with us still treating Chad’s cough.  We need to keep him in good shape so we don’t have to delay his surgery again.  I am counting down the days to no more dressing changes and on more nose tape changes.  Chad has come a long way to be in position to get this new catheter.  It is a sign that his chemo will be getting easier and he will not be accessed weekly as he is now.  This should make life better for all of us.

Happy New Year to everyone.  Holiday pictures will be added soon.

Monday January 1^st to Sunday January 7^th, 2001

On Tuesday January 2^nd, Chad had his surgery to repair his hernia, get a feeding tube placed in his stomach and get a port-a-cath catheter.  The surgery took about 3 hours and there were no complications.  We thought that the first night Chad would be in ICU, but since he did not need any extra oxygen during surgery and there were no complications, the surgeons allowed Chad to go straight to the oncology floor.  Chad laid still for about 3 days.  Since he had laprascopic surgery, multiple small incisions at various spots on his torso were made to repair his hernia.  This makes for a speedy recovery because there is not a major incision to recover from. 

Chad also had his old catheter that had the lines hanging out of his chest removed and a new catheter that sits under his chest skin installed.  In addition, Chad had his new G-tube placed in the side of his stomach.  When you looked at Chad’s chest and stomach after surgery all you could see was bandages and gauze.  Morphine and Tylenol with codeine kept Chad comfortable while he was in the hospital.  By Thursday night, just two days after surgery, Chad got out of bed, walked around the room and played with his toys on the floor. 

We left the hospital on Friday.  Chad tummy was a little sensitive, but he was pretty much back to his active self when we got home.  We removed all the gauze dressing on his chest and G-tube on Sunday.  Everything looked like it was heeling properly.  Chad did not have any stitches.  They use small sterile pieces of tape to hold the skin together.  When those fall off, the skin is healed.  We cannot bathe Chad until the tape falls off naturally (he really does not care if he is dirty and smells a little).  We also have to clean the area around the G-tube with peroxide daily until we can use soap and water in the bath.
This week we started the 6^th and final round of chemo for Chad.  We will repeat these drugs every 80 days until September when Chad hits is the two-year anniversary of his diagnosis, which is the end of his treatment.  The drugs are much easier on Chad’s immune system and emotional state.  We will only have to go to the doctor every 4 weeks now instead of every week. 

Chad started a new medicine, Prednisone, this week.  It is a steroid that could have had the same effects as the Decadron, which caused Chad to be extremely moody.  Thankfully the Prednisone did not cause the moodiness.  It just made him want to eat a lot.  Since his hernia is now repaired, eating should not longer be painful.  I still give Chad another chemo drug, 6-MP; Diflucan, an anti-fungal drug; and Lactulose to loosen his stools.  This may seem like a lot, but it really is not that bad.  I am finally starting to see how much easier things will be as we move forward.  No more nose tube, no more lines to flush and no more catheter dressing changes.  All I have to do is administer medicines.  I even went and joined the San Antonio Quilt Guild with the intention of starting up my quilting again.

 

 

Monday January 15^th to Sunday February 4^th , 2001

Chad is definitely enjoying round 6 of his chemo treatment.  There are fewer medicines that he has to take and he goes to the oncologist once a month instead of every week.  The only new thing that he has had to get accustomed to is his new stomach tube, called a G-tube. Right now the tube hangs out of his tummy about 8 inches so we have to keep it tucked in surgical net around his waist.  The net is loose fitting so it is not uncomfortable.  In a couple of weeks Chad will have this tube replaced with a new G-tube called a Button.  It only sticks out about an inch and looks like the mouthpiece on a beach ball.  The only cleaning needed is just washing the stomach area with regular bath water.  Chad will keep this tube until he starts to eat enough food to sustain him without nighttime feedings. 

Chad is still receiving 3 cans, or 24 ounces, of Pedisure a night.  The feeding bag hangs fro an IV pole behind our bead and the tubing goes through a pump that pushes the food into Chad’s G-tube.  It runs continuously through the night giving Chad 2 ounces over an hour.  Sometimes Chad rolls over too many times and we have to untangle him from the tubing.  It does feel like we are often sleeping with one eye open.  This is nothing new for us since this is the same way Chad received his feedings through the nose tube. 

The other thing we are working on these days is keeping Chad from being constipated.  We have started a new medicine that is given twice a week.  It seems to be working much better than the other one he was taking.  I’m hoping as his appetite increases the fiber in his diet will take care of this problem. 

Chad really seems to be having fun these days.  He is always smiling and in a good mood.  Our lives actually seem to be quite normal these days.  I have even signed Chad up for Kindermusik class.  Parent and child together dance and sing songs led by an instructor.  There are 3 other children in his class.  I will have more to talk about his class in the next update.

 

Monday February 5^th to Sunday February 11^th , 2001

The week Chad received his steroid 3 times a day for 5 days.  This makes for a busy medicine week but at least this steroid does not have the adverse affects like his pervious steroid, Decadron.  The steroid, Prednisone, does not alter Chad’s mood much at all.  We also went to the doctor on Monday for Chad’s chemo push into his catheter and for the IVIG to help keep his immune system strong.  It is very scary to only go to the doctor once a month.  I liked always knowing what Chad’s blood counts were.  We did have a little scare because Chad started getting very bad bruises on his knees.  The weather has been in the low 70’s here so Chad has spent a lot of time on his slide and climbing outside.  He must have really banged up his knees while having fun.  As soon as I saw the bruises, I called Chad’s doctor with concern.  He said Chad’s skin may bruise easily due to all the medicines he has received but to make sure he does not start getting bruises in places that he has not bumped himself (bruising is a sign of relapse).  So now every time I see a bruise the hair stands up on the back of my neck.  Chad’s doctor told me I can bring Chad in anytime I want to have his blood checked if I am concerned.

Chad and I went to his 2^nd Kindermusik class.  Chad loves to run around the dance studio with the 2 other boys in the class.  It is nice seeing Chad socialize with other kids.

Monday February 12^th to Sunday February 18^th, 2001

On Tuesday Chad received his final feeding tube, called a Button, at this surgeon’s office.  It looks like the mouthpiece on a beach ball.  It is held in by a small saline filled balloon inside the wall of his stomach. I just plug an adaptor tube into his button and hook up his feedings.  Chad seems to be eating more on his own.  He uses a fork very well.  He still enjoys chicken nuggets with ketchup the best. 

This week at Kindermusik Chad was the start student.  He was the only one out of the 6 kids that wanted to sit and listen to the music and perform the activities.  I was a very proud mommy.  Chad also is starting to new little fuzzies on his head.  He is not supposed to lose his hair anymore so hopefully he will have a full head of hair soon. 

We are also seeing some signs of terrible twos.  My sweet little angel seems to have a temper sometimes.  He thinks it is fun to hit mommy and run away laughing.  I have gotten this under control by saying mommy likes hugs not to be hit.  He has learned that hitting is bad.  I must admit that I do laugh to myself when I hear his evil little laugh after he gives me a love pat.  I do enjoy getting the hugs too.

Monday February 19^th to Sunday February 25^th, 2001

We had another good week.  Chad continues to enjoy Kindermusik and not having any doctor appointments.  This week his occupational therapist from Easter Seals gave him his 6-month evaluation.  Back in September when Chad was 21 months old, he was at a 15-month skill level for fine and gross motor skills.  This included placing pegs in holes, stacking blocks and keeping a concentrated focus etc.   Well, Chad is now 26 months old and was evaluated at a 32-month-old level.  This means he improved over a years worth of skills in 6 months.  Chad will no longer be seeing the therapist for help with motor skills for obvious reasons.  She will continue to come to help him along with his eating skills.  We will see her once a week here at house.  Chad will also continue to see a speech therapist once a week.  His speech is also coming along nicely.  The therapist tells me Chad is doing all the normal things Kids to as they learn to talk.

Monday February 26^th to Sunday March 4^th , 2001

We were still up to the same routine this week, seeing the occupational and speech therapists, going to Kindermusik and having fun.  This week though, Chad was a bit more moody and clingy.  We used to go for his IVIG every 3 weeks but since we only have to see the doctor every 4 weeks, we thought we would start doing his IVIG treatments every 4 weeks too.  I have a feeling he is not himself this week because he needs the IVIG.  The immunoglobulins give a needed boost to his immune system as well as just make him feel good.  Since have suppressed his immune system so many times with chemo, he is not able to make enough for himself.  We will probably continue to give Chad IVIG even after his chemo treatment ends in September.  It is hard to say how long he will need these treatments.

Monday March 5^th to Sunday March 11^th, 2001

This week we went to Chad’s doctor for his monthly appointment.  I must admit that it is nerve racking getting his blood drawn.  I try and always remain positive but the reality is that Chad could still relapse at any time.  Good news, Chad’s blood was fine.  The doctor and nurses gave him his chemo and Chad received his IVIG.  It takes about 4 hours for the IVIG to be infused so we had a long day at the doctor’s office. 

This is also the week that Chad received Prednisone.  It has not caused much moodiness in the past but this week Chad seemed to be affected somewhat.  He was very demanding and also very whiney.  The Prednisone, which is a steroid, also causes an increase in appetite.  Chad has been eating like piggy this week.  He loves chicken nuggets, carrots, ice cream, cookies, cereal and his favorite, strawberries.  He has enjoyed going out to restaurants and eating grilled cheese.  We know he has put on weight this week. 

We are also excited because we purchased season passes to Sea World, which is about 10 minutes form our house.  The weather is great here in San Antonio so we plan using our passes right away.  Something else interesting to tell you about – this week I had to have a list of Chad’s signs that he makes ready for his speech therapist.  It is not American Sign Language that he does but simple gestures that a meaningful to him.  I could not believe that he had close to 50 signs.  The woman was very impressed and said she had not seen a child with so many signs that he had made up on his own.  She mentioned she thought Chad must be a very smart little boy.  This was another day we were all very proud of Chad.

Monday March 12^th to Sunday April 1^st, 2001

The last three weeks have been quiet and uneventful, which is just the way we like it.  We pretty much have a normal routine now just like every other family.  The most exciting thing that has happened is how much Chad’s speech has progressed all of a sudden he started to repeat new words that we were saying to him.  This is what we have been waiting for.  It was very concerning that he was not trying to say words on his own unless he had heard us repeat them 100 times.  Finally he started repeating words that he heard us saying.  He does leave of the endings of some words. For instance, we bought him a T-ball set for the yard.  Chuck was saying “hey, batter, batter, batter, swing.”  Well Chad says, “bat, bat, bat, swi.”  It’s a little bit choppy, but that’s OK.  At least he is taking an interest in words.

Another fun thing is that we finally began to start house hunting.  San Antonio is growing bigger and bigger every day so it is a challenge finding all the new housing developments.  Hopefully by the end of the year we will be able to have our own home.

Here is a funny thing Chad has started doing lately.  Some times he will be walking around the house and you can tell he is just looking for something to get into.  So we say, “Are you looking for trouble?”  What he has started to do is actually peak around corners or bend over and stare at the carpet looking for trouble.  It is so funny to watch him laughing along acting like he is looking for trouble.  I actually bought him a T-shirt recently that says, “Here comes trouble.”  He is always a good little guy but some times you can tell by the twinkle in his eye and the gun on his face that we better watch out.

Monday April 2^nd to Sunday April 29^th, 2001

Well, the last few weeks have been relatively quiet, with Chad just continuing along with his treatment.  We started the second round of the sixth and final course of his chemo treatment.  The second round will be just like the first round which lasts 88 days.  We started by Chad being sedated and chemo put into his spine and spinal fluid being taken out.  They test the fluid to make sure there are not any cancerous cells present.  He also got a dose of chemo into his catheter and we started the steroid Prednisone again.  This is the busiest medicine week we have.  Chad will continue getting chemo every four weeks. 

One thing has changed that concerns Chad getting his IVIG.  If you remember the immunoglobulins were being given to Chad every four weeks to coincide with his chemo pushes.  I called Chad's doctor to tell him I thought we couldn't wait four weeks because it seemed Chad was getting cranky, lethargic, and not as hungry all of which are signs you need and IVIG boost.  We went in at 3 1/2 weeks for an IV transfusion and the doctor tested Chad's own levels of immunoglobulins.  It showed that Chad is not making any immunoglobulins on his own.  This is concerning because Chad may need to get these infusions for a long time (like for years).  This sometimes happens when you destroy the immune system over and over again.  If this is the biggest problem Chad faces long term, he is in good shape.  Frankly, we have bigger fish to fry as they say.  We will cross that bridge when we get there. 

Chad's speech is really coming along.  We are so happy and relieved.  He is saying daddy and mommy instead of dada and mama.  This is a big step putting two sounds together.  He had even said purple and cool dude.  There are many other words he has said but they escape me at the moment.  I guess that's a good sign that he has so many new words I actually can't remember them off the top of my head.

I would also like to take a minute to inform you of some cancer facts that I received from the National Childhood Cancer Foundation.

The good news-

Ø       A child diagnosed with cancer today has a 70% chance of being alive and well five years from now.

Ø       Leukemia, once a certain death sentence for a child, can now be cured up to 80% of the time.

Ø       The cancer death rate has dropped more dramatically for children than for any other age group.

The bad news-

Ø       Each school day, 46 children-enough to fill two classrooms- are diagnosed with cancer.

Ø       One out of every 330 children in America will develop cancer before age 20.

Ø       Cancer kills more children than any other disease.

I bring this up so that you can make other people aware of the need for research dollars to help find cures for the 46 children a day diagnosed with cancer.  The reason that the cancer death rate has decreased so much for kids is because over 90% of them are part of clinical research trials.  Had children not been part of trials in years past, we would not have the protocol that is keeping Chad alive today.  Chad is also part of a clinical trial.  Please go to www.nccf.org and www.childhoodcancermonth.org to look into the ways that you and your family and friends can help find a cure for all childhood cancer.

What has got me fired up about raising money for research dollars is our little friend Gunnar Harwerth.  A few months back I asked for prayers to help Gunnar get through a rough time in his battle with a rare brain tumor.  Things seemed to be moving along fine in fact his dad and I were even making plans to get all of us together at their house for dinner and there was even talk about things getting back to normal for them.  A couple weeks ago I received a terrible email saying malignent cells had been found in Gunnar's spinal fluid and even more horrifying, that the tumor had returned adjacent to the old tumor in his brain.  Surgeons have decided that this three year old just can't  handle another brain surgery and therefore they will not be removing his tumor.  Gunnar's oncologist was going to be informing his parents what the next course of action would be.  After I got over the initial sadness of this news I got very angry.  Because Gunnar's tumor is rare there has not been a lot of research done to help figure out the way to handle and cure this particular kind of tumor.  This is where the need for research dollars comse in to play.  Gunnar has a website www.geocities.com/Hollywood/2587/michael/gunnarharwerth.htm.  You can read more about Gunnar and other children with this kind of tumor.  What Gunnar really needs right now are your prayers to help his doctor find the appropriate treatment to treat his tumor successfully.  Thank you in advance for all the prayers for Chad and Gunnar.

Pictures will be coming soon!!

Monday April 30^th to Sunday May 30^th, 2001

Chad continues to roll along with his chemo treatments.  He is still getting his IVIG every three weeks and the chemo administered every four weeks.  He has started to have one problem over the last few weeks it concerns his dirty diapers.  They were becoming extremely watery every now and then.   We got doctors orders to take sucrose out of his diet but that did not seem to make much of a difference.  I started noticing that he was having the runny diapers after eating cheese or ice cream.  So we have taken dairy out of his diet and it seems to have done the trick.  We had a follow up appointment with Chad's stomach doctor and he said Chad is past the age when kids get lactose intolerance and he thinks Chad had a bug in his digestive system and now he has gotten rid of the bug.  We are supposed to reintroduce dairy June 1 to see what will happen.  I am willing to bet money that the watery diapers will begin again but let's hope the doctor was right.

Chad is really getting used to his new catheter.  We had a doctor appoint the Wednesday after Memorial day and he hardly cried at all when they accessed him.  There were more tears while taking off the saran wrap and tape that covered the numbing cream than when the nurse sterilized the area and poked the needle in.  When they are done drawing blood and giving the chemo the nurse simply pulls out the needle.  Technology is truly amazing.  Chad's white count has been a bit low the last two times they drew blood.  The doctor is not concerned at all because he can tell there are immature good white cells that are down the pipeline waiting to be turned into mature white cells.  I can't help but worry a little every time something is different.  Let's all hope that everything continues to be okay.  More good news about Chad's speech.  He make progress every day.  His speech therapist is amazed at how well he is doing.  He has started putting three words together and copies many things we say.  Chuck has said he needs to be careful to watch what he says.

I do have some bad new to bring you.  Our sweet little friend Gunner passed away the Wednesday before Memorial Day weekend.  He was at home in his mother's arms as he took his last breath.  His parents were able to control his pain with very powerful drugs at home so they say his last days were very comfortable.  His family was glad that they were able to care for Gunnar at home with all the people and things he loved around him.  It was just time for him to stop fighting.  His service was beautiful with hundreds of people there rejoicing in his life.  His pastor made a wonderful analogy.  Here on earth we see our life as if we were looking at the back of a mosaic.  It is hard to tell why one piece is next to another and in some places it is not very pretty.  When we get to heaven we see our life from the front of the mosaic.  We understand why every piece has its place and it is a beautiful work of art.  In this time of grieving this gave me some comfort and also gave me a different perspective of how to view Chad's illness.  Gunnar's father has updated their website if you would like to read the families thoughts.  The website address is located in our last update.  Continue to pray for strength for his loved ones.

June of 2001

All is well here at the Harthan's except we are still dealing with Chad's runny diapers.  Removing Lactose from his diapers has helped but the diarrhea still seems to come and go.  He has up to 12 dirty diapers a day.  Thank goodness he receives so much fluid at night or he would surely dehydrate.  With the continued problems, Chad's stomach doctor scheduled him for a colonoscopy on June 13.  Well, things did not go well.  The doctor gave me a medicine, which is usually very gentle, to clean Chad out the day of the procedure. Within 30 minutes of me putting the medicine into his stomach tube he started having severe diarrhea, turned completely pale and seemed to be coming in and out of sleep. I was too scared to rush him by car to the emergency room myself, so I called EMS. We have had to rush to the emergency room many times so you know if I am calling EMS something must really be wrong.  It turns out his kidneys have been affected by the chemo and they did not rid of the phosphorus in the medicine. So in a nut shell he was od'ing on phosphorus. 

When we got to the emergency room they poked immediately into the catheter he has in his chest and started IV fluids.  Within two hours he was starting to act like his normal self.  We stayed in the hospital overnight for more fluids and observation.  Needless to say, we did not have the colonoscopy done.  The damage that has been done to his kidneys is reversible with the use of medicine.  The doctors told me to take comfort that the kidneys can heal themselves.  This could be a medicine that Chad has to take for a very long time, potentially for a life time.  He must stay away from phosphorus and magnesium.  We have to be very careful of what medicines he takes from now on. 

Chad is still making his diapers so we still need to figure out what is going on.  There can be a variety of reasons this is happening and we are scheduling another colonoscopy soon.  We will be using a different medicine in preparation.  Another reason he could be having this problem maybe due to his night time feedings.  We may need to add more fiber to the formula.  This sounds strange considering he has diarrhea but this may actually help Chad to form solid stools.  This is going to sound strange but we have been through so much worse than this that, yes, while those 48 hours were very scary, we are over the incident and dealing with the way things are going.  I do have to give Chad more medicine than other moms, he does have to sleep with us at night because he gets night feedings in his tube, and we do go to the doctor every couple weeks, but I have seen children who are chronically ill and needing around the clock care.  We are fortunate that Chad is with us and has such a happy little life. 

We have added another activity to Chad's week.  Chad still loves his Kindermusik classes and now he also goes to Little Gym.  Chad started jumping on the furniture and bed so I looked for an outlet for all this energy.  At Little Gym he is able to jump on a trampoline, hang from bars, walk on the balance beam, run through an obstacle course of giant mats, and socialize with more children.  He actually cries when we have to leave.  The people at Little Gym don't know about Chad's illness and I'm sure would never guess he receives chemo every night. 

Chad also has a new love in his life - Thomas the train.  Chad has gone crazy for trains.  Thomas is a character that has videos, books, and a movie about the trials and tribulations of a train engine.  There are also Thomas train sets.  Chad has acquired quite a few pieces.  This is not a cheap toy set.  A little four inch train car costs about $10.  We often tend to give in, so Chad will eventually have the best set on the block.  It is so nice to watch him sit and play quietly with his train set.  He is such a little boy. 

Chad has also taken a liking to tennis.  He enjoyed watching Wimbledon on TV so we got little foam racquets with a foam ball.  He has really gotten pretty good at hitting the ball.  The nice thing is the ball can't possibly break anything so we can play in the house.  It is too hot here to do anything outside.  Now for a sweet little tid bit.  Chad has become very kissy lately.  When we go to be at night he gives me multiple" smooches" (as we call them) as we lay falling asleep.  And sometimes in the middle of the night he will lean over and give me kisses as I sleep.  What more can a mom ask for!  And for some more good news - we finalized the paperwork in June for our new home!  We are building a home about 30 minutes away from our parent's homes in a town called Boerne (rhymes with journey).  It is heading towards the Texas hill country, which is very beautiful.  Essentially Boerne is close enough to San Antonio for convenience, but still feels like country living, away from the hustle and bustle.  The house will be completed sometime in January.  We are so happy that we are finally getting on with our lives.

We will take some pictures for the next update. 

July of 2001

We are enjoying our summer, keeping busy having fun.  We have good news to report with our second attempt at a colonoscopy for Chad.  This time I just gave him clear liquids the day before and Pedialyte in his nighttime feeding.  No medication was used to clean him out.  The doctor found no problems with his colon.  We were happy about that, however we still don’t know why he is having runny diapers.  I have started tracking his medicine schedule in relation to his diapers and it seems after he gets the chemo put into his line his diapers get really runny about four days later.  Luckily he only gets this medicine every four weeks.  The diapers tend to get better after he gets his IVIG infusions.  I will continue to track this and see if it follows a pattern.  Chad's doctor has told me that some kids just get diarrhea during their treatments.  We may just have to deal with this until December when the chemo is scheduled to end.

 My parents took some vacation recently so we played tourist and did some things around San Antonio we had never done.  We took a ride on the kiddy train at our zoo.  Chad just loved it.  He keeps talking about the big engine and the engineer.  Remember, he is really into trains right now.  We also visited a working dairy farm.  Chad got to pet an enormous pig, saw a cow get milked and loved watching the roosters, chickens and goats roam around the farmyard.  Chad also went for his second haircut.  I think I forgot to tell you he had his first haircut ever in June.  The second time was not really any better than the first.  Chad is very frightened.  We had gone in May to attempt a cut but just left because he was crying so hard.  Finally he became too shaggy to wait anymore so we went in.  I take him to a kid’s only salon where they have a video screen at every chair so at least his favorite video can play to try and distract him. 

 Chad is also becoming quite a little athlete.  Chuck had taught him how to hold a bat properly and Chad can now hit a ball thrown at him.  We think that is pretty good for a 2 1/2 year old.  He also loves tennis, golf and basketball.  We all had fun celebrating my 30^th birthday on July 24.    Chad liked opening my cards and even blew out my candle for me.  We sang Happy Birthday a few times and let him blow out the candle every time.  We hope all of you are enjoying your summer just as we are.

August of 2001

As August is coming to an end, Chad and I are busy registering for a fall semester of fun.  Chad will be enrolled in Kindermusik and will continue going to the Little Gym.  This semester Chuck's mom will be taking him to the Little gym along with a neighbor and her grandson (Chad's friend Nick).  I am excited about the free time this will give me. 

Recently Chuck and I attended a pediatric teaching conference in Austin held by the American Cancer Society.  This was our first night away from Chad ever.  The conference was very informative.  Chuck and I attended sessions mainly about long-term surviving issues.  There could be many problems down the road from learning disabilities, lowering of IQ, memory problems, bone pain, handwriting issues, sterility, to even osteoporosis in the next few years.  Needless to say this information was very concerning and overwhelming.  I started to get a little frazzled when Chuck brought me back to earth.  We decided to handle this information as we have everything else, become informed and then live for today and not worry about the future. 

A couple weeks ago Chad had his one year review with Easter Seals.  It is amazing how much he has improved.  They tested him on tasks he should be able to do at his age level.  He ranked considerably higher compared to his scores a year ago.  He just needed the exposure to real life situations.  Hard to do that when you are in a hospital bed.  They told me he was doing many things at a level much higher than his age.  This could be a sign of high intelligence.  Of course that made me happy to hear.  They actually said he barely qualified for speech therapy.  In fact the speech therapist made sure he qualified so that he could continue to be seen through December.  At the age of 3 you can no longer receive services from Easter Seals.  Next week I will be going with the speech therapist to the elementary school where we will be living to discuss speech therapy through the public school system.  Easter Seals is obligated to help you transition to life after their services.  Easter Seals is a wonderful organization!

 Chad had a play date last week with Michael, a 2 1/2 year old little boy diagnosed with leukemia in May.  We met his family at the doctor's office.  Michael does not receive the high levels of chemo like Chad because he was over one year old when diagnosed.  That is way Michael is not in the hospital at this still early stage of treatment.  Michael also has a 4 week old little brother.  Chad tells me I have to buy him a baby girl.  Chuck and I have started talking about trying to fulfill that request.

September of 2001

We started off September with Chuck taking a week of vacation over the Labor Day holiday.  We had lots of fun.  We saw a production of Bear in the Big Blue House at a local theater.  Chad was dancing, clapping and cheering during the entire show.  That made the ticket price of $80 for our three tickets a little easier to swallow.  We also took a ride on the train at our zoo.  Chad can't get enough of his trains.  We spent a wonderful morning at Sea World with Chad's new friend Michael.  It is fun watching the boys play together.  We have actually tried to get together with Michael at least once a week.  If you remember from last time I told you about Michael who was diagnosed with leukemia in May.  His mom has taken him out of the play group he was in due to all the germie kids.  Michael is only two months younger than Chad so they have common interests and play nicely together.  I have also been able to answer a lot of his mom's questions and she gives me an ear when I need to talk too.  There are not too many people who truly understand what I am going through.

 On September 7 we passed the 2-year anniversary of Chad's diagnosis.  What a phenomenal two years it has been.  I feel very blessed that Chad is with us.  We still need your prayers to help get him through the next three months and then on with life after treatment.  On September 17 he started the last 88 days of his treatment.  His doctor checked his spinal fluid then injected chemo, they gave him chemo through his line and we started the week of steroids.  This is the last time Chad will get chemo into his spinal fluid.  At the end of the 88 days they will check his spinal fluid again and also do a bone marrow aspiration to check his marrow.  This is done to make sure his truly ready to be off therapy.  I have not discussed with the doctor what the plan will be once therapy ends.

 On September 22 our family and friends walked in the annual Light the Night for Leukemia fundraiser.  We raised over $1000 to help find a cure for leukemia.  Over 30 people wore We Love Chad t-shirts made by my sister and her sorority.  This walk has turned into an annual fundraiser for my sister's sorority.  Speaking of fundraisers, I never told you of the wonderful success I had with the Mother's Day make believe tea party fundraiser I participated in for the Leukemia Society last May.  Chad's family and friends raised $1880!  Many people sending in $100 checks.  The entire southwest chapter of the Leukemia Society raised only $1500 in 2000.  My enormous success was due to all of you who care for Chad and want to him as well as all the other leukemia patients cured of this awful disease.  We thank all of you for all your support.

 The events of September 11 have also touched our family.  My 20-year-old brother, Erik, is a Marine currently out at sea.  We need your prayers for his safety as he may be called on to fight for our country.  Many of you have also asked about Chuck and the traveling he does for his job.  For months now he has been working on a project based out of Houston.  Houston is close enough that it is easier to drive than fly so he has been driving for months and will continue to so do until about March of next year.

 Chuck will be adding some pictures of Chad within the next week so you can all see how big our sweet angel is getting.

October of 2001

We have had a fun filled October, keeping busy all the time.  Chad is enjoying his Kindermusik class on Tuesdays with a standing play date with his friend Michael afterwards.  We continue to play with Michael at least once a week if not twice.  We took the boys to a pumpkin patch where Chad picked out his pumpkin for carving and his mini pumpkin for carrying around.  Chad has decided he does not want to get dressed up in any kind of costume for Halloween this year.  I have tried two different Thomas the Train costumes and have decided it really is not worth the struggle so Chad is going to wear his glow in the dark skeleton shirt from the Gap and hand out candy.  He really does not understand trick or treating anyway so I'm sure he will be just as happy seeing the kids come to the door. 

On Wednesdays Ms. Mary his speech therapist is still visiting Chad from Easter Seals.  Mary can not believe the tremendous progress Chad has made since January when she started seeing him.  She says he actually does not need her assistance anymore but she will continue to see him until he turns 3 in December.  At the age of 3 Easter Seals assistance ends.  I know that she has fallen in love with Chad just like the rest of us.  We are starting to think that he will probably not qualify for speech therapy through the school district either.  I have started to research preschools so that Chad will still get classroom instruction as well as social stimulation.  This make me very nervous thinking about him being in a room full of germie kids.  Chemo will end in December and Chad will continue to get his IVIG infusions so his immune system should be strong enough.  I know everyone worries about leaving their child with someone else but, of course, Chad is so special to us that it makes me nervous not being in control of his environment.  I think mommy will have more separation anxiety than child will. 

On Friday Chad continues to enjoy going to the Little Gym with Chuck's mom.  He loves jumping on the trampoline and has mastered the summersault.  They go out to lunch afterwards and then go to the park or the toy store.  I love the three hours of free time it gives me.  Chad's medicines are still the same with one chemo push this month, a week of the steroids, daily chemo and medicine for his kidneys that I give him, and IVIG every three weeks.  We will do the same for the month of November and then end treatment around December 10.  The IVIG will continue as well as the Bicitra for his kidneys. 

 

Our house is coming along.  It now has a roof and we can walk upstairs to the game room.  By the end of the month sheet rock should be up.  Projected move in is January.  We are very excited.  My mom and I have been taking landscaping classes Tuesday nights in October through our local school district.  I love gardening and have big plans for my yard.  In San Antonio it is important to learn how to plant using drought tolerant grass, flowers, shrubs and trees due to the water restrictions we have every year.  There are a lot of deer that roam through our neighborhood so that will also be a challenge keeping them from feasting on my hard work. 

I also have to say how touched I am by all the well wishes we have received for my brother from those of you who follow this web site.  Erik has mentioned that getting mail is what keeps up the morale for him and the rest of his fellow Marines.  If you could take a few moments to write a letter or two to Erik I know he would be very, very grateful to hear from you.  Even if you don't personally know him, just let him know how you know me, Chuck and Chad, and tell him about yourself.  He is a very brave, proud Marine and would love to hear from fellow Americans who support what he is doing.  This could be another way for you to express your patriotism.  Here is his address:

 

LCPL Zielinski, Erik W.

B. Co. 1^ST LAR 2^ND PLT.

UIC 39712

FPO AP  96609-9712

Thanks for all your prayers for Chad and Erik.  We wish you a happy Halloween!

November of 2001

Well, you know us, never a dull moment at the Harthan's house.  The Monday before Halloween Chad had his regular IVIG appointment.  I told his doctor that he had been running a low grade fever at night and had been cranky. Chad is such a good little guy that when he starts to misbehave and not listen to me I can tell he is not feeling good. So the doctor said he wanted us to go downstairs in the office building and get x-rays of his sinus and chest to see if anything showed up.   On Tuesday he called me and said something did show up on Chad's lungs and he wanted us to see Chad's lung doctor that day.  We went in and the doctor said he did not want to take any chances and wanted to admit us to the hospital for about 3 days for tests.  Chuck and I were shocked.  Everything was moving so fast that I began to get a little scared.  Chad was playing happily in the doctor's office so I asked him if we had to go in that Tuesday afternoon or could it wait until the morning.  Chuck just found out that Monday he had to take a HUGE trip on Wednesday to (you'll never guess) Kazakhstan, which is two countries above Afghanistan.  Since Chad seemed to be just fine, the doctor said it would be okay if we waited to admit Chad Wednesday, Halloween morning.  I asked the doctor if Chuck needed to cancel his trip and he said no.  More about the trip later. 

 

On Wednesday Chad was bronc'd, which is a procedure that puts a scope into his lungs to see what is in there.  He had a little inflammation and some goobers that the doctor was able to suck out.  The doctor did not find the horrible scenario that he was fearful of.  Evidently they were all scared Chad had fungus in his lungs.  Fungus is very hard to treat and can lead to very, very serious complications.  Remember, majority of cancer kids die from infection.  Chad did very well during the procedure and we went back to our room.  They put Chad on Zithromax antibiotic for 5 days and IV fluids.  Chad started to nap when I noticed he was shivering but very hot.  He had a 103 temp.  Needless to say I was very concerned.  Turns out that is expected after you are bronc'd because of the narcotics you receive to sedate you.  Well, his fever went down and we had a nice night watching Babe the pig movie and drawing trains on his new Magna Doodle.  Kids are so adaptive.  He did not care he was stuck in the hospital bed.  Nurses were showering him with candy and my mom and sister stayed and visited until late.  Thursday morning they took Chad down for CAT scans of his sinus, chest, stomach and pelvis.  This was done as a precaution.  Thank goodness for good insurance because the scans cost $5000.  Nothing abnormal showed up on the scans at first glance and Chad was doing so great they sent us home late Thursday afternoon.  By the weekend Chad was his normal self.  We are doing breathing treatments to keep is lungs free and open but he had no more fever and started back to our normal routine the following week. 

 Now on to Chuck.  He left that Wednesday morning, Oct. 31, traveling through Paris, Budapest and then to Kazakhstan.  He landed and took a bumpy bus ride for 5 hours (I laugh when I think about Chuck sitting on this bumpy bus ride) to a Chevron oil production camp in the middle of the desert.  The client asked Chuck to attend meetings with them and its suppliers.  It is evidently a big deal for the firm to get invited.  Anyway, the client guy he was traveling with assured him it was very safe and said he takes the trip all the time.  So off Chuck went.  He was there until November 13th when he flew to London.  He was in London until the Tuesday before Thanksgiving.  When leaving Kazakhstan the government tried to take his computer.  They try stuff like that with "first-timers" Chuck found out.  Chuck just kept saying No and Kazak guard finally gave up.  Chuck also got in trouble for taking pictures of the oil production facility (like he is on vacation or something). The police, who spoke only Russian, approached him but I guess they figured he was harmless.  I'm glad I'm not writing about how Chuck had to escape from a Kazakhstan jail. Ha Ha!  This whole trip really makes me laugh. Many of the wives got to go to London.  I was slightly disappointed I could not meet Chuck there.  One of these days I'll get a trip out of his company.

 So, all is well and things have slowed down.  I am researching preschools for Chad thinking he will not qualify for speech therapy. Yeah!  We were 15th on the list for one school and our number has come up.  It is a very popular school.  Parents for new enrollees line up at 4 a.m. for registration!  I will not have to do this since Chad would be starting in January.  I am a little nervous about Chad being around other germie kids.  I wipe Chad's hands with anti-bacterial wipes if I see him around a child with a runny nose or cough.  But of course, I can't go to preschool with him to wipe his hands.  His chemo is scheduled to end December 10 and along with the IVIG he receives, his immune system should be strong enough.  I have discussed Chad starting school with his oncologist and he had given his permission and believes Chad will love it.  I think mommy will have more separation anxiety than child! 

 We all had a nice Thanksgiving with my parents' coming over to Chuck's parent's house.  We did miss Todd, Chuck's brother who lives in Los Angeles and my brother Erik who is on the USS Comstock.  We understand that the Marines are on standby off the shore of Pakistan just waiting to be called in.  Erik sent a touching email to my mother saying he would be off ship for a very long while.  Keep sending yours prayers and letters.  Erik's address was in last month's update.

December is going to be an exciting month for us.   We have Chad's birthday party planned for December 8 at a kid's fun and games pizza place.  This is the first time he has been healthy enough for us to invite his friends to a party.  On December 10 Chad will receive chemo for the last time.  Wow!  December 18 is Chad's birthday so, knowing us, we will probably celebrate again at home.  We are looking forward to Christmas.  Chad has already told Santa about all the Thomas the train engines he wants.  And our home should be in the final stages of completion.  We wish all of you a wonderful holiday season!!