Plantation Key School Steps Up for Charlie!!!!!!

Plantation Key School has picked up the chant for Charlie! The third grade class from last year began collecting pop tops in an effort to see what 1 million was like. However, upon hearing that they could help Charlie's dad, Matt and the Ronald McDonald House in the fight against cancer, they decided to donate all their collected tops to Charlie! I can't imagine a more powerful message - kids helping kids! What a great lesson to learn so young and to carry forward as they grow and experience life. As the presentation was being made, one child initiated a chant for "Charlie" and soon the whole crowd was holding up their bags and chanting for Charlie! As the students help load the tabs in Ms. Gibson’s car that day, one student was overheard saying “this makes me feel so good to help Charlie”. The students were so excited about their community service and that it went to help a real child with a face. These children took the opportunity to take something of throwaway value, a pop top, and recycled it into a tool of giving! Thank you PKS! You have done more than help out a family fighting cancer with this act...you have enabled these children to realize the act of helping others! What a fantastic lesson for us all!

Stormin for Charlie!

What a great time we had last night! Randy Johnson, of the band Stormin, put together a charity concert at the Park Theatre in Holland, MI last night. The proceeds from the show were being donated to three great causes - Harbor Humane Society, Salvation Army Heat and Food Fund, and www.charityforcharlie.com! It was an awesome experience to be a part of and I want to personally thank everyone who came to the show. The band put on a great show and the crowd was really having a super time! The dance floor was packed with people from teenagers to septuagenarians, all enjoying two tight musical sets. Matt had an opportunity to get onstage and express his gratitude to all and you could see how much the event affected him. Seeing all those people coming together for a great time and a great cause was a highlight for the Gibson family!

Charlie goes to the Firehouse

Among Charlie's favorite things in the world are big trucks, and what is bigger than a big red Fire Engine!?! On a day when Charlie was deemed healthy enuogh to get out for a bit, Matt took him down to the Station No. 5 in Lafayette, IN where he was embraced by the whole fire house! He was treated like a Fire Chief and he was loving every minute of it! Matt took some video that we want to share! Enjoy! For an update of further efforts by the station, please link here: http://www.jconline.com/apps/pbcs.dll/article?AID=/200812170300/NEWS/812170323

Fundraising!

We had a very productive fall season as far as fundraising goes! The bracelet sales were brisk with young Luke Hanneken spearheading an effort to sell about 50 bracelets at Holland High School! Gareth Collins, a member of the extended family in Chicago took up the gauntlet, selling bracelets for $20 a piece - raising $200 in 2 days! Inspired, he went on to organize a football square fundraiser for the Lions Thanksgiving Day game. He raised $1400 nearly singlehandedly! This kind of support has really eased a load off of Matt's shoulders, giving him some freedom to focus on what's important - his son!

Christmas with Charlie

We had the opportunity to see Charlie 2 days after christmas and celebrate the holiday with him and his father Matt. The kids were super hyped as they had not been able to hang with Charlie since just before his diagnosis. It was pretty hard on his cousins Joseph and Oliver, who spent most of the summer competing to be Charlie's "favorite"! The girls were just happy to have their "little buddy" back.

Charlie was just cute as a button and, though his blood counts were low, he was really just our normal happy nephew! Because of his counts we had bottles of Purel within reach at all times and we had the very real fear of having to abort the whole trip should any of the family come down with anything so much as a sniffle. Fortunately, those fears came to nought and it was a highlight of our holiday season! Charlie has been responding well to chemo and looks to be right on schedule as far as treatment goes. We continue to be blessed with an outpouring of support from so many in the community as we journey on this long arduous road. Thank you to all and I hope to get back up to speed with these updates! :)

Charlie update

Charlie went home tonight, which is very encouraging! Apparently his blood work was ok, he was given a dose of antibiotic and tylenol. His fever stabilized and he will be back in the morning for his chemo. Matt has pics and vids, I think, that I will post as I get them! Thanks to everyone for your thoughts and prayers.

Charlie is rushed to Riley Children's Hospital

Details are scarce, will update as info becomes available, but Charlie was running a fever of 104f today. He is to be hospital bound with any fever over 100f, so he must have spiked hard today. Expect at least one night at the hospital. He was scheduled for chemo tomorrow, I don't know if there will be any changes on that front.

Charlie's new norm :(

Treatment takes it's toll.

Charlie at a happy time!

Charlie video...chemo and bone aspiration 10/2/08

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.

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!

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!

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.

Chemo day - september 25 2008

Thursday is chemo day, at least for the next 5 weeks or so. No food, no drink, as Charlie has to be put under a general for the intrathecal(read spinal) chemo and also have chemo through the port. The port was installed during the surgery the first week. They had to cut a flap of skin to imbed the portal to a substantial vein. They do this because the meds are so toxic they can degrade the circulatory system. (arteries and veins) Charlie gets a little freaked out seeing that big needle going for his chest, but pushes through. First things first, they do a blood draw, and find the platelet count is up to 368. Platelets are the things in blood that allow you clot, or stop bleeding when you cut yourself. Anything under 500 is considered low, thrombocytopenia to you in the know. This took from 10am to 12:30 and required another 1 1/2 hours of rest to make sure everything went well. That was the short day, next week will be more involved as they have to do a bone marrow aspiration again to check for defective blood cells.

Charlie laid with Matt while he read books and watched some cartoons. He had a little juice and crackers but was unable to hold himself up because of all the drugs in his system. Equilibrium was a bit uncooperative as Charlie tried to sit himself up, only to fall forward time and again. He was most pleased to recieve a stuffeed kitty and a lightning mcqueen matchbox car. He was sleeping fitfully and throwing up is becoming all too routine for him.

Chemo week 1 continued

Charlie continues to impress us all with his resilience. He has had a pretty healthy appetite since coming home though it doesn't come without issues! Because of the liver enlargement (hepatomegaly) and spleen enlargement (splenomegaly), his stomach continues to be somewhat distended. This adds to other areas of discomfort and makes him rather full of gas, if you catch the wind. Matt has been away from him through the beginning of the week, but Charlie asks for him with frequency. Charlie called his dad just to talk about the beagle puppies, Jake and Jude. He also wanted Matt to bring a pick-up down when he came to visit, ending the request with a great big "vroom vroom!"

Treatment takes it's toll

Charlie woke up Sunday, his first day back home, at 5am screaming for eggs and bacon! This kid has his priorities straight! By 9:30am he was asking for grilled cheese, this was to be a pattern for the morning - asking for more at 11:00 and 12:30. The steroids are really stimulating the appetite of this little fighter. However, the chemo is also starting to affect him, causing a lot of puking during the day. He is going to need to keep up the healthy appetite in an effort to maintain normal caloric intake! He is also starting to lose some hair, which is rather unsettling to the parents, even though they knew it was coming. The rapidity of onset with regard to the chemo drugs brings a sudden and irrefutable reality to the whole situation.

In spite of the effects, he was happy to snuggle his dad and get a solid three hour nap in Matt's arms. He woke to exhibit short periods of normal activity, followed by fatigue shortly thereafter. He started walking a little bit after being laid up for a whole week, but was unsteady on his feet. As a result of the chemo, he bruises very easily, making even the simple act of walking a source of potential concern. Through it all, you could see moments when Charlie seemed entirely himself, with no regard for the disease attacking his body. It is these small acts that we strive to impress in our memory, knowing it will only get more difficult for him as time goes on.

Matt had to leave Charlie in Indiana as he returned to his life in Michigan. As if it were not hard enough, Charlie's sobs for his father only make it that much harder. The importance of a constant support for Matthew becomes all the more evident as I see him enter my home carrying the burden of a newly ill child to whom he has had to say good-bye. Even for only a few days.

Charlie goes home

Charlie has done progressively better as they have adjusted his meds and he has been more restful. Matt snuggled the little sleeper for several hours during a couple of spells yesterday. His response has moved up his "go home" date, and he left the hospital today, 20 september 2008. We are all very pleased with his path report and response to therapy. That he has left the hospital is surely a good sign. However, though the immediate crisis factor has resolved, Charlie's duration of treatment has only just begun.

Charlie's treatment for the leukemia will only get more severe with time. The experience for Matt has only touched the surface as his life has been altered in a most significant way. Already a devoted father, regularly logging in 12 hours of driving every weekend he had custody, the level of commitment has just been raised. Charlie will have weekly visits for the next twelve months. I will be setting up a "Matt and Charlie" account in the next few days with the objective of supporting Matt in his efforts to be a very constant presence during Charlie's treatment. I would appreciate everyone reflecting on the duress that will be Matt's life for the next three years and consider gifting this devoted dad. There are many ways to give and we will be exploring all facets available to Matt at this time. Consideration is being made regarding a special account or foundation. More to follow as this begins to take shape.

Day Four

Well, Charlie has had a pretty rough morning. Last night coming off the anasthesia we saw a side of Charlie rarely (if ever) seen: the cranky Charlie. Pretty fitful, itchy and downright uncomfortable. Coming off the pain meds and dealing with the new port in his chest, I'd say he dealt with it a lot better than I would have! He had his first systemic chemo last night, dripped in and uneventful, as they had told us it would be. Once he got to sleep he did get decent sleep for a bit. He also started steroids and this mornings orneryness may be attributable to that, or likely just the discomfort associated with the recent procedures. It is 10:00 am now and he just fell asleep. Lauren had them mute all the monitors in the room and we all hope he can rest for a bit. It is really impressive to see how Matt and Lauren hold themselves together and present a solid parental front for Charlie to pull strength from.

Matt and Lauren will be getting a Master's degree in Leukemia over the next few days. Learning to read and interpret the blood counts, how to discern the subtleties of good and bad days for Charlie, what to expect from the course of treatment and skills to manage the schedule that has just become their life for the next three years. Charlie will be under close observation to see that his response to the initial chemo is appropriate and there is a chance he could go home on Sunday.

Charlie pics Post-Op

Sitting back with a movie and a snack.

First food after surgery. Popsickles don't count as food, right?