Post-transplant Day 32 (10/17/06)

The doctor informed a surprise decision that Charley could be discharged today after the operation of removing the lumen double lines on right chest. His neutrophil count kept 1,330. The nurse continued the comprehensive lesson of home-care and taking care the port and one-week IV of fluid at home. Washing hands is a golden rule. Charley only can meet healthy visitors outdoors. We went through a list of “prohibition”, including food unsealed/exposed more than one hour, avoidable third party persons, indoor plants, etc. This is a challenge but solemn mission to all the transplant recipients’ family. From now on, we are practicing a germ-free living at home for 9 -12 months. If Charley is not infected, he will be taken care at Jimmy Fund Clinic of Dana-Farber Cancer Institute. Charley understands the importance of living clean. Charley was so excited by the notice of going home although he could not eat anything since 8 am. He keeps telling how much he misses two catty pets. This operation was standby and we waited until 11:30 pm. The operation department apologized for rescheduling due to overtime surgeries. Nehemiah had to go home for cleaning up the house, especially the bedding set. Deborah was exhausted for holding Charley’s hunger and such a long waiting. Anyhow, tomorrow Charley will go home definitely.

Prayer request for post-discharge living:

1. Strengthening Charley and parents during a period of time that Charley needs a frequent clinical appointment,
2. Zero infection after discharge,
3. Less impact by the graft-versus-host diseases,
4. Charley still has a rich and meaningful living while he is isolated.

Birthday

Charley’s birthday is October 16^th.

Charley’s 6 years old birthday party held at Children Hospital Boston BMT Unit (10/16/06)

Charley’s birthday is October 16th. We anticipated he would still be in the hospital in the middle of October, so we had a party for him during the Labor Day weekend prior to his hospital admission for his 6th birthday and to celebrate the good results from the treatment and bone marrow search. About 30 people came. Charley enjoyed being a “Birthday Star” for the first time in his life.

Charley opened the birthday gifts with his ELS teacher (10/16/2006)

Post-transplant Day 31 (10/16/06) -- Successful “Engraftment” on October 16

Charley achieved “engraftment” today as his neutrophil count reaches 1,320 and it has been over 500 on three-consecutive day (had 820 yesterday). In the afternoon, the Transplant Unit prepared a “surprise” birthday party for Charley in the toy room. He was stunned as he walked into the party room - a group of people shouted “Happy Birthday, Charley!” A special cake was ordered from kitchen. Charley opened gifts with delightful face. Since today, Charley is allowed to eat outside food, freshly cooked only. Daddy went to Sichuan Garden, Brookline to order his favorite dishes. The owner knew Charley is under transplant and she will treat Charley as special guest. As usual, Charley enjoys Sichuan Fish Filets the best. He went to sleep with a thankful heart.

Post-transplant Day 29 (10/14/06)

Charley’s neutrophil count (ANC) reaches 760 from 290, eventually achieving the day 1 of magic 500. He will have “engraftment” of new bone marrow once the ANC continues higher than 500 for two consecutive days. We are so delighted!! It had been a tough 10-days as we were anxious of plotting the curve of ANC day by day. Charley’s engraftment is a little behind the average of stem cell transplants, which is probably due to the fever and/or a lengthy chemotherapy history. Now, Charley’s discharge is expected not too far away. He will be going home whenever doctors are pleased with his eating status after engraftment. A happy event will be his birthday next Monday (Day +31). The transplant unit is preparing a party for him. This will be Charley’s first “real” birthday being celebrated. It’s hopeful that his 6-year-old birthday is also the day of engraftment.

Prayer request for the third week of October:

1. Charley’s full recovery and discharge,
2. Less impact by the graft-versus-host disease,
3. Well preparation at home for his next 6 - 9 months post-discharge treatment and maintenance.

Post-transplant Day 28 (10/13/06) -- The Rise of Morning Star

Yes, his prayer for mommy’s freedom from headache had been answered! Charley’s neutrophil count (ANC) was 290, increasing from 250 of Day +28. For the first time since Day 7, he was out of IV pumps for several hours. Charley just could not wait fto go outside without holding the IV stand. He rode a toy taxi car and waved to everyone along the hallway.

Charley was still weak. As the second day of morphine discontinuation, the nurse had to give him two oral doses of morphine to relieve him from the withdrawal. This morning, the clowns played with Charley and made him extremely excited .

His appetite was not good until he heard of “pizza” in the evening. It was late to order pizza. We promised him to have it next day. The oncologist and practitioner, Dr. Sallan and A. Androkites were quite impressed with Charley’s improvement. We discussed the prevention of recurrence. Its detection will reply on the blood report and early signs and symptoms, instead of routine bone marrow biopsy. We are so grateful for every effort Dana-Farber has done for Charley. In the late afternoon, the nurse gave parents home-care lesson and practice: i) to change the dressing of central lines once a week and maintain the flow of lines twice a day, ii) detailed lesson of discharge at home. Brian and Paullina came to take care of Charley so that Deborah and Nehemiah could have an outside dinner which was the first time since Charley’s hospitalization.