Off to the Emergency Room

Dear friends of Charley,

Charley is on the way to the ER right now. He has had a fever of 38.2, belly pain last night, and back pain this morning. Yesterday, Charley's LDH level was elevated.

Recently, Charley's nutritionist suggested that Charley's parents add fat to Charley's diet. It is possible that his pancreas cannot handle the newly added fats and this may be what is causing his symptoms.

In other news, Charley's liver enzyme function is decreasing. According to his doctor in Beijing, Charley's LDH and liver function increases when the leukemia takes over. So his lower liver function is actually a good sign.

Charley continues to show signs of improvement. Let's pray that this trip to the ER is just a bump in the road to Charley's recovery.

Deborah and Nehemiah have continued to get little sleep. This week, Charley's doctor made a deal with them. He said that one of Charley's parents should alternate sleeping in a separate room each night, leaving the other parent to sleep with Charley. Jokingly, he said that if they did this, Charley would get platelets on Wednesday. Last night was Deborah's turn to take the night off. She is not used to getting a full night sleep, so she woke up at 3am to research the effects of diet on the pancreas.

Prayer Requests:
* Charley's trip to the ER will lead to a simple solution for Charley's pain and fever.
* Charley's parents will be able to take advantage of Dr. Sallan's sleeping plan so that they can be more rested and better able to care for Charley.

Update from Madeline

Feeding with dedicated preparation, Healing Service

From Madeline

Last Tuesday evening I went over to Charley’s house to visit with him and his family. He looked so good. He seemed bigger and so much stronger. He was very active and basically was acting like his old self! It was so wonderful to see him looking so good and fooling around. His cousin, Maria, was there and the three of us make a couple of puzzles and played some games.

When I got there the family was eating. His parents and Grandma were all coaxing Charley to eat. He was doing a pretty good job at that, until his stomach got a little queasy. It is a tremendous thing to watch how Deborah cares for Charley and his medical and nutritional needs. She researches nutritional recipes, prepares, cooks, blends, strains, and then inserts the food into a bag. A pump pushes the food through the N-G tube. Deborah has to make sure that the food is of a good consistency so that the pump and tube are free flowing and pushing the food at a rate that does not make him nauseous. Whenever Charley has to take any medicines, she has to take the capsules and pills that Charley can’t swallow and break them up. Then she mixes them individually with water. She puts the pill into a tube which will be hooked up to the N-G tube. She and I sat together at the kitchen table, she was fixing the meds. I was stirring the nutritional concoctions, making sure that the oil was blended in.

Nehemiah told me about their visit to a healing service last Sunday at Mission Church in Roxbury (Father Lennon once visited and prayed for Charley in the hospital). There were many people there. A deacon was presiding and speaking at this service. As he came down to the congregation, two men were there to “catch” anyone who might fall or be “slain in the Spirit.” When the men came to Charley, they began patting his hands, doing a few “high fives” so that Charley was very calm and happy. When the deacon came to Charley, Charley immediately fell to his knees. (He had not been told to do this, he just did it!) The Deacon did not ask anything but simply laid his hands on Charley’s head. All of a sudden, Charley began to shake. His feet were vibrating and moving back and forth, and his whole body was quaking. Nehemiah thought that Charley was fooling around, and bent down to say something to him to stop fooling, but when Nehemiah saw Charley’s face, he knew that the Holy Spirit was with Charley. When the Deacon took his hand off of Charley, he stopped shaking.

Prayer Requests:

• Let us pray that the Holy Spirit has brought His glorious healing to Charley’s body.
• Let us pray that God will give strength, perseverance, and mental and emotional fortitude to Deborah and Nehemiah
• Let us pray that the medical team will continue to look for and find ways to help Charley become better
• Let us thank God for the many people who have helped this family, with either money or services, that God will bless them for their unselfish love!

I want to include part of an email from Deb, a member of Deborah and Nehemiah’s church in Westborough. Thanks so much for putting me on your distribution list for Charley's updates. I have to tell you- two Sunday's ago, June 10th, we were sitting in church (Methodist Church in Westboro) and I moved to an empty seat so that I could video tape my kids better. It was Childrens' Sunday so they were all involved. After I moved, the only empty area was next to my husband. Next thing we knew, in walked Charley and his parents!!!! They squished in next to my husband. Everyone in the congregation had tears in their eyes since we all recognized them immediately. It was great to see him. He moved up to sit with the rest of the kids in the front row. He looked so happy!! My son had done the children's story during the early part of the service so Charley missed it. After the service, Jason brought the animals back out to show Charley. One was a kinkajou. Charley was so cute with the animal and his parents just radiated happiness as they saw their son being just like all the other kids!! He told my son that he has two cats and was so proud that he even sleeps with them!

We keep Charley and his parents in our prayers all the time.

RESPONSE FROM REQUEST FOR HELP FOR THE CHERNG FAMILY

Erin,
I placed your concern and struggle on the Westboro Methodist Church Prayer Line this morning.A copy is below. Part of your message was included in the Prayer Line message.
Prayer Line Coordinator,Connie Hutt

+ Erin Le, friend of Debbie, Nehemiah and Charley Cherng, struggles to procure hands-on help for the Cherng family. She writes: As Deborah and Nehemiah devote everything to their son, they have fallen behind in many of the things that we are fortunate to be able to do every day. Their laundry is piled up, they struggle to get to the local pharmacy to pick up Charley's prescriptions and they prepare special nutrition for Charley from the most tedious of recipes. Deborah has been spending about 16 hours a day in the kitchen. They do not get to spend as much time playing with Charley as they would like. I asked them if they would be comfortable with their local friends coming to help them with some chores and to entertain Charley. They would be grateful for any help that you could provide...Thanks...Erin Le
ErinLe@Alum.Dartmouth.org
(440) 725-6414

IJN, we pray the LORD , Our Deliverer and Savior, Our Strength and Provider, prompt many to rise up and volunteer to assist the parents in their daily ministrations of tending their child; and His Holy Spirit Guide many to the aid of their fellow believers in Christ...with Thanksgiving and Praise...Amen

Labs Update

Yesterday morning, Charley got another platelet transfusion. His labs were looking better than his previous clinic visit. His white blood count went back up to 1300 and the ANC was 500.

Humor, Blood transfusions, Church

To Charley’s Friends and Family,

Yesterday, Charley had his second visit at Jimmy Fund Clinic at Dana-Farber Cancer Institute this week besides one visit at the University of Massachusetts Medical Center. Charley has been excited to be able to be in all parts of the waiting room, including the activity area and the food area. For months after his bone marrow transplant, Charley was not permitted to go into this area and had to go straight to a private room. Charley enjoys seeing and playing with other kids and their families. He continues to make people smile with his kind words and actions and laugh with his amazing sense of humor.

Most of Charley’s laboratory profile has been improving, particularly in liver and gall bladder functions, and his appetite is gradually coming back to a state where he is regularly eating dinner and selecting favorite foods. However, yesterday’s blood tests showed some potential instability. Charley’s hematocrit dropped from 26.5 to 21.7, so he received a major RBC transfusion in addition to platelet transfusion. This was the first day since discharge that it has dropped this low, but the doctor was not concerned since this is a result of Charley not having a RBC transfusion for 10 days. His bone marrow is still not recovering, but he is managing to live with that quite well with weekly RBC transfusion and 2-3 times platelet transfusions. Also, Charley’s WBC was not as good as it has been as his ANC dropped to 260.

Tomorrow, Charley will go to a healing service at a church in Mission Hill, Boston.

Prayer Requests:
* Please pray that Charley’s body follows his mind as he is determined to overcome the cancer that is “sleeping” inside of him.
* Please pray that Charley’s most recent fluctuations in blood test results will prove to not be a major issue in Charley’s treatment.
* Please pray for Charley’s doctors and other health care providers that they will be granted the knowledge to help Charley’s continued improvement.

FATHER'S DAY and Extra Sleep Needed!

Charley creates a puppet show!

After yesterday's long and exciting day, Charley needed some extra rest today. He woke up feelling a bit nauseous, but still wanted to go to church. When they were half-way to church, Charley just wasn't feeling well enough to go to Sunday School. So they returned home.

Soon, Charley felt better and asked for some Kong Pao chicken!

As Deborah and Nehemiah prayed before dinner this evening, Charley asked that they all hold hands together. This was Charley's first time joining the dinner prayer in 4 months. Nehemiah feels that this was a blessed Father's Day gift!
In addition to his request for holding both mom and dad's hands for dinner prayer, Charley picked up two Mickey Mouses (one big and one little) and sat the little one on the big Mickey's lap. Then he put them at the head of the bed and asked Nehemiah to buy a Mickey's mom to make a complete family. How precious!

Deborah and Nehemiah have had the challenge of getting Charley on a regular sleep schedule. Charley has been so energetic and excited to be home that he does not like to take naps and he likes to stay up late. So Charley's parents are working really hard to help Charley to get the sleep he needs to be healthy. This is important for boosting Charley's immune function as some literature shows that the human body enhances hematopoiesis and builds the immune system between 9-11pm. Today was the first day since discharge that Charley had a nap and went to bed by 9pm.

Charley's bone marrow is still weak. Last week, the WBC remained around 1000 and the ANC 400 while platelets were only 8,000. At this level, Charley's care demands 2 major platelet transfusions weekly.

Prayer Requests:
* Please pray for Charley to have healthier sleep patterns.
* Charley's family's need of good family care and support at home
* Charley's bone marrow will strengthen and he will be able to undergo successful transfusions in the meantime.

Boston Duck Tour!

Boy did Charley have a great day today! He got to go on a Boston Duck Tour with his parents. He won the tickets through a Dana Farber raffle and even ended up with enough tickets to take his friends from next door. The tour was for Dana Farber patients and their families.

For those of you who don't know, a duck tour is a tour that uses amphibious World War II vehicles to take people around. It is a tour around the streets of Boston AND a tour along the Charles River...both in the same vehicle! Would you believe that Charley even got to drive the boat? Wow! Charley has dreamed of going on a duck tour for a while and everyone is so grateful that he got to go...and that he got to go with a group of friends, that he got to be on the tour with other people who have been bravely fighting cancer, that he got to QUACK with his family and friends, and that he got to drive a duck boat!
And as if that wasn't enough, they ran into a friend from Cambridge Baptist while running an errand on their way home. She joined Charley and his parents for a healing prayer before they went their separate ways. We know that things like this are not just coincidence...praise God!

June 12 Update from Mrs. Figueras

From Madeline
Dear friends of Charley:

I spoke with Charley’s dad on Monday. It has been a pretty busy week for this special family. They came home last Tuesday (June 5) and on Wednesday they were back at the hospital for a transfusion, and then again on Friday for another transfusion. Charley has no bleeding and he is a little bit better every day.

He has a nasal-gastric tube inserted through his nose into his stomach, and he is taking more nourishment in this way. He is taking vegetable broth, fruit juices, and pureed foods through this tube. Preparing and serving up this food is a little tricky…it has to be given in a slow, regular rate so that it doesn’t cause nausea. Good news, this food is stimulating his appetite. Yesterday he ate some cherries, dumplings and watermelon.On Sunday, Charley went with his parents to Church. This was so special because this past Sunday was, “Children and Youth Sunday.” The news that little Charley was there spread through the congregation. The Pastor announced, “Charley, Charley is here! Let us give him a hand,” and they all clapped for Charley. Charley just stood there and waved his hands.
This past weekend was the Relay for Life, a weekend event sponsored by the American Cancer Society to raise money for cancer research. There were many teams of walkers participating, and there was always a member of a team walking around an outdoor track. Charley’s name was placed on many luminaria bags, white bags with a candle inside, which circle and light the track during the overnight walk. People make a donation to dedicate these luminaria to someone who has battled cancer. This weekend these events were held in both Worcester and Westboro, (and in Shrewsbury a few weeks earlier). Many people remembered and dedicated their walk to Charley.

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