Post-transplant Day 4 to Day 16 (9/19-9/30/2006)

The past ten days have been very tough for Charley. As his immune system has been knocked out by the pre-transplant conditioning therapy and immune suppressant meds, the side effects grow bitterly day by day. The following is an incomplete list of challenges Charley has been facing. According to the medical team, most of them are expected for bone marrow transplant patient.

• Low blood counts

The WBC has been under 100 for 10 days. His RBC and platelet counts are also very low and fully rely on transfusion. Low platelet count could cause bleedings. Doctors watch over any signs of hemorrhage, particularly in his brain. So far, Charley has received three red cell and three platelet infusions.

• High blood pressure

There are two possible causes: side effect of cyclosporine and fluid retention. High blood pressure is treated by two meds: oral medicine for quick relief and skin patch for longer term effect. Charley is quite sensitive to the oral medicine, One day, soon after he took it, his blood pressure dropped to 70/20. The nurse gave him some fluid at high rate to increase the blood pressure. It took several hours to back to normal. The dose of the skin patch has been increased three times. It seems still not high enough as Charley needs to take the oral medicine for high blood pressure a couple time a day. We hope the doctors can find the right dose of skin patch soon so Charley’s blood pressure can be stabilized.

• Fever

To prevent any infection, Charley started with one Bactrim (for prevent PCP), one anti-fungal and one anti-viral drug daily before BMT. He had several episodes of fever this week. The medical team treated it carefully, including microbial cultures and adding 4 new antibiotics and one more anti-fungal Rx. Up to now, they have managed keeping the fever under control within few hours of onset.

• Itching

Several external drugs and Beni are used to relive itching. They are helpful but cannot keep Charley free from unbearable itching.

• Pain and mucositis

According to the medical team, Charley’s mucositis is relatively severe comparing to other kids. The sore in his mouth, throat, G-I track to his bottom bothers Charley all the time. On the 5th day of BMT, doctor started giving him 24 hour continuous morphine through a pump to control the pain. Both nurse and the patient are allowed to push a button to increase the morphine dose as needed. Even with the help of morphine, Charley struggles to take the oral meds several times a day. One morning, Charley cried very hard after he took a pill. (This is the only time he cried during the hospital stay.) Doctors let him skip the meds for two days except the hypertension pills. Brave Charley resumed the challenged routine on Day 11. Nurses praise him "Charley is a champion, he is as strong as a warrior".

• Other side effects include nausea and vomiting, diarrhea and constipation, burning skin and rash, lost appetite, hair loss including eye lash and eyebrow…

All above side effects are expected according to the doctors. One unexpected episode occurred on Thursday, Sep. 28. Charley’s platelet count was 10. He slept late in the morning. He woke up at 11:00am. The 12 o’clock vital signs were fine. At about 1:30pm, while Charley was making a necklace for Mom, his body temperature climbed to 38.2C with very high blood pressure. After he took the hypertension pill and finished the necklace, he told he was not feeling well. Mom called nurse immediately. By the time the nurse came to our room, Charley closed his eyes. Both Mom and the nurse called Charley’s name loudly, shook him and tried to open his eyes. He did not respond for a while. In the meantime, a group of doctors and other nurses rushed to our room. After a few minutes, Charley finally responded "I am so sleepy, why you wake me up?" We all held our breath until we heard his complaint. The doctors order the platelet transfusion immediately to prevent bleeding in the brain. They also added two new drugs, one antibiotic and one anti-fungal.

In addition, Charley’s blood samples were taken from three central lines for microbial cultures. No worried pathogen has grown yet. This was a quite eventful day to us. It is still unknown to the doctors why it happened. We need to take precautions against any abnormality more carefully.

Charley is still very playful. He likes to play with LIFE game and puzzles. He likes drawing and coloring. He enjoys crafts. This week, Charley skipped a couple of classes because he was weak or had other procedures. He is relatively quite due to his mouth sore. It is amazing that he only cried once during this tough time.

As it has been 16 days since the BMT, we are anxiously waiting for the engraftment. The signs we are looking for are the increase of WBC/neutrophil and the change of blood type as that of the donor. Hope we can report you the good news soon. We will keep sharing with you more about what the living in the bone marrow transplant unit.

Prayer request for coming week:

1. New bone marrow grows

2. Less pain from mucositis

3. Brave in swallowing pills

4. No infections

5. No surprise as it was on last Thursday.