A long awaited update!

Thank you to all who continue to check for updates on Charlie. This update will not be so full of facts and figures, ie. what was the result of the bone aspiration last week? (This is where they drill into the bone marrow to count cancerous cells, and it is done with some frequency during the first two months of treatment). This will be a tug at the heartstrings, at least, it is for me as I put words to the feelings that engulf the family of this wonderful child.



Yes, Charlie is out of prolonged hospital stays....for the moment. We hope for good, but that remains a constant eventuality when fighting leukemia. Charlie is home aside from the weekly visits to Riley's Children's Hospital for chemo and other scheduled tests and unscheduled blood transfusions that occur as needed. The prognosis is good, considering his age and the initial pathology reports. Yet, this child is very sick.



Charlie has sat up one or two times in the last nine days as the chemotherapy takes effect on his little body. He has not crawled or stood up or walked since he came home from the hospital. He hates taking a bath, gets fatigued playing cars and trucks while lying in bed after only a few minutes, and limits his speaking to requests for food or his "bucket". His bucket...he is so accustomed to throwing up now that the request is one of the only phrases that continues to come naturally to him. The doctors are concerned about nerve damage in his legs, but on top of the lethargy that is a result of the chemo, he has also gained 10 pounds in the last week due to the steroids and his seemingly endless appetite. He craves food with little nutritional value, asking repeatedly for grilled cheese and hot dogs, mac and cheese and bacon and eggs. Because of the weight gain his skin is so tight it is almost transluscent, with a blue pigment that contrasts with his red rimmed eyes. He goes through diapers at a rate that astonishes even me, and I had two girls going through them at the same time! The mere process of going to the bathroom in his diaper causes him to break out in sweat. His bedding needs changing frequently throughout the day and night.



The upside? This is what the doctors expect. This is "normal" for a child fighting the cancer he has, under the treatment regimen he is on. I am inspired by the strength Matthew shows in the face of this task. Is he overwhelmed? Yes. Is he grateful to the outpouring of support from family and friends? Of course. Is it hard to respond when the question comes at you: "How's Charlie doing?" Terribly so. Charlie is responding well to treatment. Things are going "well". But the term becomes so relative in the face of all that Charlie is going through. All we can do is continue to offer support, create good intentions for Charlie, and put him in our prayers.

Please consider donating to Charity for Charlie. You can find it on the web at charityforcharlie.com. 100% of your donation will go directly to support Charity for Charlie. This Charity is a collaborative effort of Friends, Family, and Community-at-Large to improve the life of a young child and his family by providing the moral, spiritual and financial support necessary to sustain their lengthy battle against Leukemia.