8 Days at Home: Happy Charley, Exhausted Parents

Dear Friends and Family of Charley,

Since the last update, Charley has continued to enjoy being at home, going shopping, and playing with friends.

In the last 8 days, Charley has had 5 visits to the clinics (at UMASS and Dana Farber). On Monday night, Charley's gums were bleeding. His parents took him to the ER at UMASS for a platelet transfusion. They were at the hospital from 10pm to 3am! The plan is now to get platelets from UMASS every Monday and Thursday.

Charley slept a lot yesterday (Tuesday). He also went to UMASS to see a new doctor for a second opinion. The doctor is still reviewing his case.

Today, Charley received a blood transfusion at Dana Farber. While there, he also enjoyed some school time and music and art therapy.
While his parents are happy and relieved to be at home with Charley, this also means that they have been acting as Charley's nurses, nutritionists, and physical therapists. You probably already know that Deborah and Nehemiah put all their effort into everything they do for Charley. So they have been sleep-deprived and drained. They need your constant prayers for rest as they deal with ever-changing routines.

Erin

Home Sweet Home

Pictures of Charley's First Day at Home

Charley is home! Charley returned home one week ago and his homecoming has improved both his health and happiness. During the first few days, Charley was weaker and unable to climb the stairs to get to his bedroom on his own. But he quickly gained the strength to do so and enjoys the freedom of being able to go up and down the stairs.

Charley still has his NG tube and recieves nutrition many times throughout the day. Deborah is getting little sleep as she spends about 2/3 of her day devoted to making up a special Japanese broth recipe that has proven to help treat leukemia in other cases. Nehemiah's constant positive spirit helps Charley and those around him through these tough times.

On Sunday, Charley attended church and then enjoyed the company of his aunt, uncle, and cousins from Connecticut. My husband and I also had the honor of visiting Charley at his home. He was full of smiles and jokes. It was a blessing to see him eat -- dumplings and watermellon! However, Charley still faces nausea throughout the day. Although it is not as severe as before, his nausea presents another challenge to Deborah and Nehemiah as they encourage Charley to take various medicines throughout the day.

Finally, Charley's Picasa web album has been updated. Here is the link: http://picasaweb.google.com/charley.cherng

-Erin

Prayer Requests:
* Charley's stability as we wait for the clinical trial or other treatments to become available.
* For Deborah and Nehemiah to get more rest as they become more comfortable with the "at home" routine.

Team in Training

Many of you may have heard of The Leukemia & Lymphoma Society's Team In Training. It is a training program for volunteers who raise money by running or walking long distances. Since 1988, the program has raised over $700 million to fight Leukemia & Lymphoma.

Last summer, after learning about Charley, Stephanie Caprino (from California) wore Charley's name on her shirt as she ran a marathon with Team in Training. After her grandmother was diagnosed with angiosarcoma a few months ago, Stephanie is training for two more races and is also a Mentor to newer TNT members. Once again, she will wear Charley's name on her running shirt.

You can view Stephanie's webpage and support her by clicking on: http://www.active.com/donate/tntsvmb/tntsvmbscaprino

(There is also a link to her page in the "Links" section on the left side of this page.)

Nutrition and Fun!

To Charley's Friends and Family,

Over the past few days, Charley has had more of an appetite and several fun events!

Last Thursday, his social worker set up a birthday party for Charley's bear. Charley invited other 6-North friends to sing happy birthday to his bear and to enjoy some birthday cake.
On Friday, Charley vomited up his NG tube and it was removed. On Saturday, Charley was brave as he had to get another NG tube. That evening, my 7-year old cousin, Steven, came to visit Charley. Charley enjoyed making sock puppets and playing Go Fish! It is amazing how Charley responds to young playmates; they bring him so much energy!
On Sunday, Charley went to a movie show in the Resource Room and saw Night at the Museum. He enjoyed the movie, along with popcorn and the company of other children. Charley even assisted to prepare popcorn for the party.

Deborah has been adding nutritional meals to Charley's NG tube, such as vegetable and rice broth. It seems that this is helping his appetite to come back. Yesterday morning, Charley was enjoying hash browns. Unfortunately, his NG tube came up again on Monday. Brave Charley had the second replacement without problem.

Charley's parents went to a CPR course yesterday. Today, after almost 4 months (110 days) in the hospital and the doctors meeting in the afternoon, Charley was discharged this evening and got home at 9 pm. Charley was so happy and ate a late dinner. This is the first meal Charley desired to take since he was in the ICU (April 10). Praise God and let's pray for them as they make this next transition!

After the dinner, his feeding tube was hooked to a pump so he will have enough fluid and nutrients over night. Being an outpatient, Charley will need frequent platelet transfusions due to severe thrombocytopenia. However, we can help to reduce the number of these procedures by donating platelets directly to him if any nearby blood bank is willing to set up for Charley. We do not have the details of how to make this possible yet, but please look for more information in the next few days.

-Erin

Prayer Requests:
* God will be with Deborah, Nehemiah, and Grandparents as they help Charley and each other to make the transition home as smooth as possible.
* May Charley's appetite continue to improve so that he can get the energy he needs to fight his leukemia.
* God will provide Charley with an abundance of platelets from friends and family so that Charley's need for blood transfusions can be minimized.

Bone Marrow Test Results

To Charley's Family and Friends,

Charley's bone marrow test results have shown some improvement, but not remission.

Clinically, Charley is getting better. Also, his labs indicate no active tumorlysis. This means that the leukemia is not damaging him. According to his doctor, Charley remains reasonably stable clinically and his leukemia seems "quiescent".

Since the chemotherapy that Charley received in early April resulted in serious infections and a long stay in the ICU without inducing remission, Charley's doctors do not want to repeat this form of chemotherapy. Currently, there is an ongoing Phase I dose-escalation trial of a target drug that may benefit Charley. However, this study is temporarily closed for accrual. Doctors do not know when this trial will be re-opened.

An N-G feeding tube was placed yesterday. This means Charley can get good nutrients through his GI system for the first time since his bone marrow transplant.

Please continue to pray for Charley, his parents, and his doctors as they make decisions about the next steps for Charley.

Also, Charley's doctors are helping the family get second opinions elsewhere. Please pray for Deborah and Nehemiah as they make these arrangements.

Good news is that Charley may be able to go home early next week. He will be seen at Dana-Farber Jimmy Found Clinic and at UMASS Medical Center for platelet transfusion.

-Erin