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?

Brezette Bistro!

Many thanks to Nancy for delivering lunch to this mob. No one was eager to leave the surgical waiting area, in step our fabulous Indianapolis hosts. Did I mention Nancy now lives in Dallas, TX. That's right, delivery from Dallas.

CerebroSpinal Fluid is CLEAR!

We just got the news that the CSF was free of any damaged white cells! This just means it is likely there are no cancer cells hiding out around the brain trying to avoid chemo drugs! This doesn't do much to alter the long term treatment plan, but it is a great checkmark for his chart.

Thank you to those who have supported the support staff!!!!!

Lisa and I, the amateur blogger Dave, want to take a minute to thank all of you who have helped juggle, feed, transport and generally caretake our four children. At the risk of sounding exhaustive, I would like to name a few names. Thank you Ryzenga family, my boys didn't even miss soccer practice! To Cari Hart, thank you for teaching Ava a work ethic! My girls have been having the greatest slumber experience! To Megan and Avery Hanneken, the pitch in attitude has made asking no stress at all. The Hofland family took Bella under their wing amidst a full house. Jessica Weerstra showed Ava she could have fun even without her sister, no small task I assure you! To the Brezette (and by that I mean Aaron and Riggs as well), thank you for hosting us and feeding the multitude of extended family that have come to support Matt during this strenous time. Thank you to Tom Fowler and Boatwerks for making our time here possible. Above all, thank you for all your prayers, intentions, and comments. They have buoyed Matt and humbled us all. Thank you for blessing us and our family with your love and friendship. DB

Surgery Successful!

Charlie has come out of surgery without complications. Maybe a little cranky as the anasthesia wore off, but feeling better now. He got his first dose of intrathecal chemo during the procedure, that means in the sac that contains the spinal cord! He gets his first dose through the IV a little later this evening. We are told that will be rather uneventful, but I think everyone is ok with that. The oncologist came and spoke to everyone and answered questions, she is super nice and very informative. Good thing, because they will see a lot of her over the next three years! I better go get some updates myself, until then.....

Surgical Waiting Pictorial

Yeah, it's all about him!

Got Family?

Mom and Dad get the halfway done update.

Mom, Lauren, and Grandma March.

Papa March.

Wonder twin powers....we wish Charlie better with strong intentions!

Word that the port was done, getting ready for the LP.

Concerned father, working off some anxiety.

Joey giving his very popular lecture on the health benefits of fast food.

Those two....always turns to talking shop.

Uncle Zach is wiped out.

Aunt Re working the phones! Everybody wants the updates...

Half way there.

Charlie has had the port successfully put in the anterior chest wall. There was some difficulty finding veins on the initial effort, but perseverence paid off. He is stable and being repositioned for the LP to get CSF and administer chemo.

Ready for action

Charlie was sedated and in stable condition at 10:50 am. They expect to be done with the procedures by 12:00 or 12:30. Charlie should be out of post-op by 1 pm. I am hopeful to get posts up as soon as we know the procedures went well, then again later after we have had the opportunity to speak to the oncologist. Matt wants to express his gratitude as all your positive thoughts keep him in a buoyant mood!

Surgery Day

Charlie has just been wheeled in for the pre op procedure. He had a really good night of sleep last night, early morning. I was checking on Matt and Charlie every 20 minutes this morning and they were just snuggled like a bug in the rug. We are moving the HQ down to 2nd floor surgery waiting right now. Will update as the day goes on. Thanks for the outpouring of support; through emails, wall posts and comments left here. Matt, and most of the family quite honestly, has been visibly moved as he reads through the well wishes.

The Little Trooper!

Charlie the photographer catches his puppy behind bars!

Path report

OK, just got the word that Charlie has preB cell Acute Lymphoblastic Leukemia. This type has the greatest cure rate, at 85%-90%. He is getting blood right now and will likely be in surgery tomorrow for a port, a lumbar puncture, and dose 1 of chemo. This is the next big step, requiring full sedation for the procedures. There is some concern because his spleen and liver are so full of damaged leukocytes and he is going to have to rid himself of all these dead cells. He will also start a course of high dose steroids and then there is the ever present fear of infection. He may not be a "boy in a bubble", but there will certainly be a severe limitation of activites. Pics to follow after a bit!

Second day at Riley

Charlie Gibson, my 2 year old nephew, was rushed to Riley Children's Hospital in Indianapolis yesterday, 15 september. He has been sick with a runny nose and cough over the last week, nothing any parent hasn't seen a dozen times. A persistent fever began to cause concern after not responding over a few days of meds. He became ashen and looked noticeably more uncomfortable 2 days ago. Pediatricians in Lafayette, IN could not make a determination, so the referral to Riley was made. Within the hour it was confirmed that he had some type of acute leukemia. They began testing to type, including a bone marrow aspiration and blood sampling, in an effort to get chemo going as soon as possible.

Charlie ran a high fever through the night, getting limited rest and worrying his parents with high heart rates and periodic difficulty breathing. As I write this, he has just been taken down for a chest x-ray as they work to ascertain the extent of the respiratory infection. Today we anticipate the pathology report, involving a determination of the type of leukemia. Once this is known, the chemotherapy cocktail will be developed for him and treatment will begin.

This promises to be an arduous process and, with all your thoughts and prayers, we hope a successful one! This blog is an attempt at providing a one source avenue for information as well as a place for you to post comments and well wishes!