On Day +64 (Nov. 18, Saturday)

Charley woke up in good mood. His humor makes nurses and dad happy and relaxed. In fact, we were all wondering how much and how long the torture of shingles can deprive Charley’s joyful spirit. He keeps himself busy although his left leg is still bothered.

The BMT team has not found clear-cut new shingles. The doctor thinks the pain is from the previous shingles and the increased dose of neurontin would be helpful. Thank God for no fever and no hypotension. Most of all, Charley confessed his sins and asked forgiveness in his sincere prayer.

Daddy updated to Pastor Don. The fellowship and intercession over the phone strengthened Nehemiah.

A sad news that a young BMT recipient, next to Charley’s room during the transplant, passed away last week due to the progression of leukemia. Her parents sent a whole set of dinner dishes to 6-West for supporting parents who are doing their best in taking care survived recipients.

Prayer requests:
1. Comfort the parents who just lost their daughter,
2. Charley is protected from recurrence of shingles
3. Relieve him from leg pain,
4. New bone marrow keeps growing without GVHD.

Thanksgiving list:
1. Charley’s bone marrow growth meets expectation
2. Charley received bunch of greeting cards from both adults and kids.
3. English is improved some.

Post-transplant Day 57(11/11/06)

At CHB, Charley woke up with a fever of 37.7C. Yesterday’s blood culture showed no abnormality. His temperature kept dropping but came back up to 38.6C in the afternoon. In addition, his blood level of immunosuppressant drug was low so it will be tested again next Monday after the dose is increased. The doctors are working to find the cause and they are treating Charley with antibiotics.

Charley’s pain is getting better daily. His walking and activity are resuming as normal. Bill, a volunteer from Harvard Univ., was playing with him. Before going to bed, Charley sang several of his favorite songs and then discussed with daddy how Elijah was ruptured to heavens with chariot of fire and horses of fire, which he learned quite a while ago.

Prayer Request:
1. Charley’s fever will be healed
2. His defense ability can be optimized with taking immunosuppressant drugs and avoiding of unexpected infections
3. Deborah and Nehemiah need strength, intelligence and precaution to practice all the post-BMT discharge instructions
4. Charley’s morality and piety increase in wisdom and stature, and in favor with God and man

Post-transplant Day 56(11/10/06)

The first morning at home, Charley was found having fever of 38.50C and the emergency care was instructed. Daddy had been in Boston attending an integrative oncology conference. Mommy called daddy back home. At noon time, Charley was at Emergency Service, Children Hospital Boston (CHB). Around 6 pm, Charley admitted to BMT Unit for treatment. Tylenol dropped the fever below 370C. Charley’s appetite was still not restored. Mommy went home for rest.

Post-transplant Day 55(11/09/06)

Charley was discharged in the afternoon because his shingles gradually shrunk to scars. Also, Charley’s somnolence/drowsy problem had been resolved after discontinuing several suspected drugs. This is probably one of the worse experiences Charley has had in his fight with the malignancy. We were relieved although his left leg was still weak and in pain.

Good news is that Charley’s hypertension is under control. A combination of an oral drug and a patch are prescribed until the drug side effect is gone. In other words, Charley has to take more medicines in order to prevent the second attack of zoster and hypertension. It’s challenging work to give him 10 drugs in total at home plus 16-hours of IV fluid per day. Dear Charley cooperates positively.

Charley was happy to get home. He enjoyed the gifts from his grandparents (Beijing) and his grandma (US) which were just brought back by grandma from Beijing. Poor Charley had been restricted in his hospital room for 9 days, initially due to a 7-day general quarantine policy and then by quarantine policy of infectious disease. In conclusion, Charley not only survived from pain and zoster but also earned surrounding people’s respect.

Post-transplant Day 53 (11/07/06)

Charley's pain from shingles is getting better. The antibiotics have helped control the spreading of his rash. However, he still has had new, sporadic rashes after the medicine began.

Yesterday, Charley developed "somnolence". He sleeps long hours unusually. The doctors discuss with us about two possible causes:
1. morphine withdrawal/drug side effects, or
2. roster invaded the cerebrum.
Certainly, we do not want cause #2 to be happening.

Please pray for
a. The protection from roster's further invasion upon Charley's head.
b. To fulfill his desire of going home sooner.

Post-transplant Day 49 (11/03/06)

Hypertension and Shingles
On Thursday, doctors conducted a thorough exam on his troubled bone and muscular areas. Nothing was abnormal. Good news was revealed that the MRI on the pelvic bones shows a healthy growth of new bone marrow. However, he kept having a sharp, intolerable pain. He lost his appetite because of his high blood pressure. The team planned to continue with a whole body bone x-ray today as it was still a puzzle.

Last night, Charley told us that there were several rashes. The doctor took the culture from the newly developed rashes immediately and disclosed that Charley might get shingles. Charley had chickenpox in February this year in Beijing. He was quarantined at an infectious disease hospital for two weeks. Therefore, it is not a surprise to the team that Charley’s varicella-zoster virus, left in the nerve area, might be reactivated while his immune system is suppressed.


Charley had a disturbed sleep. Poor Charley kept himself busy in placing the instant hot packs to the painful areas and by pushing the booster button of the morphine pump. We know how much he was suffering. In this early morning, a doctor came to exam and found more early bumps. Eventually, the attending doctor confirmed that Charley did get zoster (shingles). The puzzle of suffering unbearable pain is resolved. Everyone appreciated Charley’s alertness of reporting the rashes in the early stage. He was given antibiotics immediately and then, transferred to a quarantined room in the same unit (Room 600, phone: (617)355-3600). He may stay in the hospital for another week.

The requirements for visitors are: i) Healthy without catching cold, and ii) Had either chickenpox before or vaccinated.

Prayer Request: 1. Charley is going to have an effective treatment for shingles 2. Less pain and stronger tolerability 3. Adequate antihypertension drugs to regulate high blood pressure 4. More faith in the Almighty.