Mattie's Blog and his Fight Against Osteosarcoma

Sunday, May 31, 2009

Quote of the day: "In spite of the six thousand manuals on child raising in the bookstores, child raising is still a dark continent and no one really knows anything. You just need a lot of love and luck - and, of course, courage." ~Bill Cosby

On Saturday, Mattie had a visit from his buddy, Brandon. Brandon and his mom, Toni, came by the hospital to visit Mattie and delivered a special and very unique gift. It is a preserved baby shark. Mattie is simply fascinated by this new addition, who we call "Sharkey," and I can definitely say that Mattie does not have anything like it. It is actually a wonderful way to learn about sharks and opens up a whole dialogue about these creatures. Brandon knows exactly what captures Mattie's attention, and I am SO pleased it is not a preserved BUG! I am sorry I missed seeing Brandon and Toni yesterday, I shall never forget the connection we have made with them at the hospital and I am happy our friendship continues on.

Left: I introduce you to Sharkey!

I had mixed feelings about bringing Mattie home last night. Clearly I was happy that Mattie's Absolute Neutrophil Count rose to 420 (which is still considered a neutropenic level, just not severely neutropenic ) and could be released from the hospital. However, I had concerns about managing his pain at home, and also from a strictly selfish standpoint, I was looking forward to having another night at home to catch up on sleep. But that wasn't meant to be, and it took me a while to come to peace with that, because it seems there is always something that arises that prevents me from being able to relax.

When we brought Mattie home from the hospital last night, he was actually very hungry. He landed up eating chicken and rice, and then at midnight wanted pizza. He is back to drinking milk, and it appears that his appetite is on the rebound, which is excellent. As I was changing Mattie today into clothes, I couldn't help but see that he is all skin and bones.

Peter tells me that Mattie finally fell asleep at 3am, but not until he received Morphine for his stomach pain. I continue to be concerned by this stomach pain, but we are following the GI physician's advice and flushing out his system. An x-ray showed that Mattie is very constipated, which I suppose would explain the pains. But frankly based on Mattie's output, I really question the validity of this finding.

When we woke up this morning, we decided what we all wanted to do together. Today was the last day my parents would be visiting with us, so Mattie seemed very eager for all of us to go out for lunch together. Before we headed to lunch, my mom and I took Mattie on a wagon ride/walk. You may recall that Linda gave Mattie this beautiful canopied Radio Flyer wagon. Mattie loves it! While walking, I gave Mattie my camera, and the following photos below are pictures Mattie captured from our wagon adventure.

Left: Mattie in his wagon!

Right: Mattie snapped a picture of some beautiful vincas.

Left: Mattie captured these lovely begonias along our journey.

Right: A picture of The Kennedy Center for the Performing Arts from Mattie's viewpoint.

Left: I had no idea Mattie snapped a picture of a motorcycle, but clearly this caught his attention.

After our walk, we convened at our home and then got into the car and drove to the restaurant.

We brought a backpack full of things to engage Mattie at lunch. However, eating with Mattie has always been a challenge, because food is not something that typically interests him. He has always needed constant stimulation to keep him engaged at a meal table. Because Mattie has been so sick lately, we haven't experienced a real meal together in a while. But today was just another illustration of the chaos in our lives. Peter sat next to Mattie and worked very hard at lunch to engage Mattie to eat and remain at the table with us. Under normal circumstances I can handle this, because this is part of the process of training a child about family time, the importance of meals, and the etiquette of being at a table. But I was in no mood for this today. I am too tired for any of this behavior, and instead of eating in peace, I found that I landed regretting going out. Despite how I felt, I know that Mattie did eat well and enjoyed being out, but his happiness continues to come at a cost to us. I guess what I am trying to say is that parenting is a hard, tireless, and never ending job in and of itself. Now in addition to one's parenting responsibilities, we must also factor in our intense caregiving role, living in a hospital, and dealing with a child who has a life threatening illness and it becomes way too much for us to take.

Tonight we have some major tasks in store for us. We have to give Mattie a much overdue bath. Since Mattie's surgeries, he has become afraid of water. Trying to bathe him is near impossible, but for his own health we have rationalized with him that he must take a bath tonight. In addition, to this nightmarish task, we also have to perform a central line dressing change, and get Mattie to take his vitamin supplements (which taste noxious!). So we will be having anything but a relaxing evening. As Monday rolls around, Mattie will head back to the Lombardi Center Clinic at the hospital and receive MTP-PE. Who knows what reactions we will get from this infusion!? The not knowing is so unsettling.

We want to thank the Maho family for a wonderful home cooked meal. You gave Mattie two of his favorite things, shrimp and pasta! Thank you also for the cheesecake! Much thanks for your continued support!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Pete, I think this fits what you and Vicki both have in great quantity, courage and love (and of course patience). Negotiating with Mattie over the medication or supplements is the only thing that makes sense right now and as long as the prize come after (reward) rather than before (bribe), I think once the situation stabilizes you will be able to resolve much of this. I do have to say I am really impressed by what Mattie built; some of those Lego sets require the mind of an engineer to assemble them. I believe they are a great therapy tool and they are a large part of my play therapy toolkit especially when working with boys so you have it right there as well. Vicki, I know you needed another (actually several dozen) night's uninterrupted sleep but unfortunately that was not to be. I know you are relieved that Mattie's numbers are finally coming back up and that he is beginning to recover from this last round of chemotherapy. Remember you cannot take care of Mattie if you don't give some care to yourself. So let go of anything you can (let the laundry wait) and try to rest when Mattie does. At least at home you don't have the interns and the janitorial staff invading just when you drop off to sleep."