Wednesday, October 15, 2008
Tuesday, October 14, 2008
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.
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.
Bracelet sales are brisk!
A quick to-do about the bracelets: the bracelets are orange because that is the color assumed by leukemia research. They are stamped with "charityforcharlie.com" in an effort to raise awareness about the website and also to create a donation source. I have had many questions about ordering them online, but a link will not be made available in the near future. There are considerations regarding available man hours to package requests. However, if you are interested in placing bulk orders, that can be done through me; feel free to email me directly at j.david.britt@gmail.com for any orders, concerns or questions. Currently, we have numerous distributors around Holland, MI; Los Angeles, CA; New York, NY; and Dallas, TX. Pursuent to demand, there may be some delays, but they are trivial when you take in the timeline of my nephew's treatment. Many thanks to all who wear this bracelet and put Charlie in your thoughts and prayers. I am so grateful to those who have responded with such support for this great little boy!
Sunday, October 12, 2008
Lemon-Aid
Samuel & Elliot Gibson are just your average 1st and 2nd graders doing their part to make a difference in the lives of others. Their solution for change was based around the basic notion that “when life gives you lemons, you make lemonade.” Through their joint efforts, these two very average little boys were able to accomplish the extraordinary feat of raising over $27 dollars for their cousin Charlie by having a simple Lemonade stand.
Way to go boys! Your contributions have inspired us all!
Saturday, September 27, 2008
Matt's time
So after chemo on thursday Matt had to finish some work in Indianapolis. Friday found him back with his son, delighted to see the way Charlie perks up at seeing his dad! Even Carol commented his attitude. Carol is mom Lauren's mother. Charlie has been having exquisite headache(HA) pain, presumably due to the lumbar puncture. That is when they put the needle in the spine to administer intrathecal chemo.
Charlie continues to have an appetite, though it has become much more selective in nature. He prefers cheesy items like cheese pizza, grilled cheese and always, his favorite - apple juice! This does no favors for digestion, as he continues to be stopped up, but urinates three times the normal frequency. A normal response to the steroid drugs.
It is particularly distressing to see how accustumed he has become to throwing up - asking dad "where is my bucket?" He does his duty and goes on without a second thought. He is becoming aware of the meds coming his way and getting a bit cagey. Initially the steroid was put in his apple juice, but now has to be assimilated into other forms of intake.
As the day wore on the HA's did not subside. There was some concern with the doctor because sometimes after a lumbar puncture there can be alterations in the volume of the cerebrospinal fluid (CSF), which can cause severe HA pain. Charlie was most happy maintaining a flat position even while eating. Nevertheless, Charlie was most pleased to step outside for a short bit and see that he had indeed brought the truck that goes "vroom vroom"! Unfortunately, Matt cannot spend overnights and had to leave. It breaks my heart that Matt has to spend this time away from Charlie. I can't even allow myself to think how this affects my nephew. So it is and so it will be. All will persevere and flourish. I take this opportunity to pass on the love of so many others as well as my own.
Charlie continues to have an appetite, though it has become much more selective in nature. He prefers cheesy items like cheese pizza, grilled cheese and always, his favorite - apple juice! This does no favors for digestion, as he continues to be stopped up, but urinates three times the normal frequency. A normal response to the steroid drugs.
It is particularly distressing to see how accustumed he has become to throwing up - asking dad "where is my bucket?" He does his duty and goes on without a second thought. He is becoming aware of the meds coming his way and getting a bit cagey. Initially the steroid was put in his apple juice, but now has to be assimilated into other forms of intake.
As the day wore on the HA's did not subside. There was some concern with the doctor because sometimes after a lumbar puncture there can be alterations in the volume of the cerebrospinal fluid (CSF), which can cause severe HA pain. Charlie was most happy maintaining a flat position even while eating. Nevertheless, Charlie was most pleased to step outside for a short bit and see that he had indeed brought the truck that goes "vroom vroom"! Unfortunately, Matt cannot spend overnights and had to leave. It breaks my heart that Matt has to spend this time away from Charlie. I can't even allow myself to think how this affects my nephew. So it is and so it will be. All will persevere and flourish. I take this opportunity to pass on the love of so many others as well as my own.
Subscribe to:
Posts (Atom)