Post-transplant Day 46(10/31/06)

This is the first Halloween Charley enjoyed in the US. He has had leg, knee and lower back pains since last Saturday. Clinicians thought this might be caused by a long term usage of steroids. Nevertheless, he prepares himself for the exciting moment. He wore his favorite power ranger costume. Charley's parents brought him to knock the door of several neighbors. He realizes with a full expectation that he will act as a normal and healthy kid at the next Halloween. Charley developed a sharp pain in the midnight. A low dose oral morphine only relieved him for 40 minutes. We rushed to the emergency service at Children Hospital. Charley was miserable until the injected morphine began to work. Charley was scheduled to be admitted to Bone Marrow Transplant Unit tomorrow for diagnosis.

Post-transplant Day 40(10/25/06)

Charley was in the emergency room at University of Massachusetts Hospital, nearby our house, last night due to high blood pressure. Charley waited for 9 hours to receive the first dose of a hypertension pill. What patience we needed at the emergency room! Doctors decided to put Charley in the pediatric ward since the first drug did not work overnight. The protection at UMASS pediatric ward is not as comprehensive as the bone marrow transplant unit at Children Hospital because no bone marrow transplant program is available for pediatrics. This worried us a little.

Although his parents were exhausted, when we watched Charley having a good time playing with the magician/clown who represents Hole in the Wall Gang Camp in Connecticut, our tiredness got released (see picture). It is a free summer camp, founded by actor Paul Newman, specifically for children with cancer and/or serious blood diseases. We wish this charity organization has vision to extend the service to China.

The second drug improved some but the outcome was not stabilized. The decision made by both hospitals’ teams was for Charley to be discharged in the afternoon and go to Dana-Farber clinic the next morning.

Post-transplant Day 38(10/23/06)

Charley went to the clinic. He was detected having high blood pressure. The clinician explained it is a common adverse effect by immune suppressant, cyclosporine. He also needed a plasma transfusion. After giving nefidepine, his blood pressure sharply dropped. Charley complained of a fast heart beat. The nurse gave him IV fluid to relieve the hypotension. In fact, Charley had a similar experience when he was in hospital after the transplant. The transplant team took a while to figure out the adjustment in using anti-hypertension medicines. Therefore, we had to be patient in a period of time while Charley suffered hypertension with extremely high diastolic pressure.

Post-transplant Day 36 (10/21/06)

This is the first day Charley stayed home without a medical appointment. He enjoys watching his favorite TV programs, making a dedicated craft and playing toys. The house is full of laughing and Charley’s beautiful and loud voice. He walked outside briefly. Charley’s appetite is improved gradually. Taking 6 to 7 different medicines three times a day is a tough job. In order to avoid GVHD, Charley has been doing a good job in taking them. Let Us Rejoice Together with Charley.

Post-transplant Day 35 (10/20/06)

Charley woke up at 6:45 am in order to get the clinic at 9:15 am for the second day. Yesterday, his WBC and neutrophil increased to 2,980 and 2,350, respectively. Charley does not need any blood transfusion this week. The clinician felt comfortable on Charley’s status and made a dose adjustment on cyclosporine, another GVHD drug. On the way home, we stopped by a post office. A lady kindly greeted Charley. She told that her leukemic son had marrow transplant 11 years ago once she knew Charley just had BMT. Unfortunately, her son could not find suitable donor and that she, only half-matched, had no choice to be the donor. He did not make it. Her blessing to Charley’s cure is really based on her own loss and sorrowfulness. This event is a sharp reminder and as Charley’s parents, we will be sure to promote marrow donation as much as we can. Through Ms. Christina Leung’s effort, Quincy Chinese Church of Nazarene in Quincy, MA will have a marrow drive after the Sunday service on November 18. Please contact Christina (617)471-2843 to attend.

Post-transplant Day 34 (10/19/06) -- Charley’s New Life after Discharge

Charley’s first day at the Jimmy Fund Clinic started 11:30 am. The parking garage was full so we eventually found a parking space on the 6^th low level of the basement garage across the street. It is a big warning to fighting cancers due to a fact that the cancer hospital is overcrowded even at the garage. Charley was led to a private room right after the registration. He was isolated from the playroom and other children. It’s a long day. The nurse drew the blood as step one. The clinician was happy to see Charley’s recovery and made dose reduction on methyl prednisone, a graft versus host diseases (GVHD) drug. No blood transfusion was necessary. The only deficiency was potassium so Charley has to eat banana and supplement. The IV fluid also changed to high potassium.

Ms. Erin Le, the ELS teacher came to the clinic teaching Charley. In addition to the language lesson, they played “Guess Who” with fun. We greatly appreciated her and Children Hospital’s education program over the BMT period. Charley likes his teachers very much! His English and Math seem to be improving.

Charley designed a DIY craft on his work station (10/21/2006)

Post-transplant Day 33 (10/18/06) -- Charley Goes Home

Charley’s underwent his operation of removing the central lines smoothly. The transplant team is pleased with Charley’s recovery. The only thing that concerns us is that Charley does not drink enough.

At 5 pm, Daddy picked up Charley and mommy “and a lot of suitcases/bags”. You just can not believe the full pack in trunk which accumulated in the past 40-days. We stopped by a Sichuan restaurant for takeout of Charley’s favorite dishes. Charley was extremely happy getting home. After a rush dinner, the visiting nurse came to set up a portable IV instrument. Charley will take 10-hour midnight IV fluid for at least one week. The nurse also trained his parents so we will take over eventually. This is an unforgettable home-reunion and thanksgiving evening. Charley played with a package of mailed-in gift. As usual, Charley listened to a Bible story in bed. We praised God as we looked at Charley’s reddish face. His face was always paled before the transplant because he suffered from both leukemia and Mediterranean anemia (thalassemia). Now, he has a great hope to be healed of both illnesses.

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 for months.

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.

Post-transplant Day 27 (10/12/2006)

Charley woke up extremely tired for two reasons: i) his body was working so hard in “manufacturing” blood cells and in “healing” the mucositis, and ii) having morphine withdrawal (according to Dr. Lehmann, Medical Director, Pediatric Stem Cell Transplant Unit). Morphine did help Charley bear a lot of pain. However, as the first day of discontinuing morphine, Charley had nausea and vomiting. Musicians played with Charley with an electronic piano.

It began with teaching a Japanese kids song. Then, Charley loved playing piano with the pianist.

Charley loves his parents and prayed for mommy before going to sleep, “Dear Lord Jesus, please heal mommy so she won’t have headache when she wakes up”.

Post-transplant Day 26 (10/11/2006)

Charley's WBC increased from 340 to 610 with neutrophil of 200. The doctors and nurses started to orient parents in terms of post-discharge practice. This is a great day to all of us who love Charley. Thanks to our almighty and merciful Lord. Charley began with an extreme joyful spirit. He picked out his favorite clothes.

He cried out “I will not have leukemia anymore” as he was washing his face. When he walked along the hallway, people cheered up him and praised him "handsome Charley"!! Hopefully his appetite comes back so he can be discharged as expected. Deborah and Nehemiah were relieved to a certain degree. We want to say "Thank you all for your kind support and faithful intercession".

Post-transplant Day 25(10/10/2006)

Charley has not had a fever since yesterday afternoon. Daddy brought Charley's favorite moon cake and cookies. We had a late Mid-Autumn Festival celebration at his bedside. Charley enjoys red bean cake with a sweet smile.

We are so happy to see his lips are freshly cleaned from ulcer and blood clots. This is really a new creation and whoever saw the contrast could testify the amazing achievement of newly implanted marrow.

Post-transplant Day 21 (10/6/06)

Charley’s new bone marrow growth keeps showing some early signs although his white blood count is still low (120). He has a fever, reaching to 39.3 this morning while he receives a combination of 5 antibiotics. Doctors are working on it. Another encouraging sign is that Charley's mouth ulcer is in improvement since yesterday. Both the hospital and church pastor came to visit us. The teacher resumed the tutoring yesterday. Charley enjoys the class. We also received a package of learning kits and parents' user guide from Charley's kindergarten. Prayer request: 1. Bone marrow grows smoothly 2. Give doctor wisdom to find cause of fever and treat it effectively

Post-transplant day 19 (10/04/06) -- The Valley of the Shadow of Death

Today, Charley woke up at 7 am for a bowl movement which he did not have for several days. The medical team was happy. His mouth sore and occasional bleeding still bother him a lot. Charley had a nose bleed while taking a shower so he got a platelet transfusion. Meanwhile, Charley's temp. was elevated to 38.4. Without modifing the antibiotics regimen, his fever was gone in the afternoon. The doctor thinks the improvement of his anal ulcer is the early functioning sign of new bone marrow. However, today's fever may delay the further function of bone marrow a little while. Overall, Charley has done his best to keep up routine activity in painting, walking and playing puzzles.

The volunteer program is outstanding and plausible. Charley is relatively weak today so he took a nap. In this morning, a nursing student came to paint with Charley. In the afternoon, a biochem majoring student-volunteer from Harvard University played with Charley both ain the toyroom and the bedside. He also shared that he is co-organizing a marrow drive at his school and aiming for minorities in the new semester. He was so pleased when he heard Quincy Chinese Church of Nazarene will have a drive on November 18.

We are doing the best to comfort Charley. Hopefully, FAITH, HOPE and LOVE carry him through the valley of shadow of the death. We pray for the smooth growing of new bone marrow toward the weekend.