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.

Post-transplant Day 1 to Day 3 (9/16-9/18)

Charley woke up with joy and energy the next morning after the transplant. He was very happy the whole day long. In the morning, Charley took a walk down the hallway and made nurses and some parents laugh as he imitated different animals voices. A couple of friends came to visit us. They prepared delicious food for us. What a love! The first immune suppression drug, cyclosporine started on Day 2. The second immune suppressant drug started on Day 2. These medicines together with conditioning therapy contribute to severe mucositis and other side effects, such as belly pain, skin allergy, diarrhea, mild hypertension etc. There are some side effects. So far they are manageable. As of today (Day 3), Charley’s WBC dropped to 290. Thank God that he has not developed a fever.

Stem Cell Transplant on Day Zero (Sept. 15)

The donor was harvested in the morning. The bone marrow arrived at Harvard Medical Center in the middle of afternoon. The lab needed to process it and only retain stem cells. The Cherng family was so thrilled when a big full bag (475 ml) of stem cells arrived at the nursing station. The infusion began at 7:30 PM and finished at 10 PM. We surrounded Charley’s bed and prayed for healing miracle. Charley’s grandmother gave him a favorite gift: Nintend SD video game for celebrating the big event. Charley dreamed it for a while so that he held it as he fell asleep. No adverse events were observed. We watched the last drop of the precious stem cells dropping into his body. We are so thankful for having so many kind people who care about Charley and helped him to achieve this stage. Lastly, we bless the donor from the bottom of our hearts that she would have a sound sleep as well as a smooth recovery from operation. We told Charley that the precious bone marrow is the biggest gift he can get in his life. We hope Charley can have a chance to express his appreciation to the donor in person in the near future.

Pre-transplant conditioning therapy (Day -9 to -1; Sept 9 – 14, 2006)

The conditioning therapy is the high dose chemotherapy and radiation that patient receives before the stem cell transplant. The day that a patient receives the bone marrow or stem cell is called day 0. The days before Day 0 are the days patients receives the conditioning therapy. The goals of the conditioning therapy are to kill the remaining cancer cells in the body and to kill the normal cells in the marrow cavities of bones so that the new marrow will have room to grow. In addition, it also suppresses the patient’s immune system to minimize graft-versus-host disease. Charley finished the 9 days conditioning therapy on September 14. He copes with it very well. After the third day of total body XRT, Charley said “Bye-bye” XRT in bed. When he was asked to whom he wanted to say Bye-Bye, Charley replied: “To my old bone marrow.” Charley is not allowed to eat homemade food this time. He can only eat hospital food (bacteria-control) or frozen/canned food. He has not had a good appetite for some time. Nevertheless, doctors comforted the parents that they do not have to worry too much since Charley gets all the nutrients he needs through IV. Charley’s aunt and her family came from Connecticut to play with Charley. His cousins, Josh and Maria, played with him on his first Saturday at hospital. Charley had a lot of fun and good appetite on that day. Pastors Don Whitesel, John Taylor and Adam Randazzo came to visit Charley and prayed for him.