There are many things to write about Nana's visit. All will be done in time. This past week, however, was a little challenging but turned out to be inspiring.
The steroid pulse had its usual stuff...plus severe back pain in Sammy's lower back. Each cycle we get a new development...what fun! This week was very intense as far as crying from anger/frustration/pain goes, and we resorted to the Codine several times. Sam has to feel very bad before he'll take anything.
Basically, the pain and crying continued into the following Thursday. This is not not usual as, by Tuesday, Sammy generally starts to feel better. Thankfully he did have his kidney ultrasound scheduled on Thursday which put my mind at ease. Everything came back okay. One kidney is slightly larger than the other, but nothing is amiss.
So it has been officially decided by the doctors that Sammy is being affected by the steroids and other chemo meds in a slightly stranger way than they are used to seeing, but it is all good in that it means the meds are working and our goal is closer to being reached. How do you tell a young child that?
I didn't have to! Sammy had an amazing discussion with me about the whole thing. He began by explaining to me that the bad pain was a sign that the steroids were the 'good guys' because they were kicking the cancers butt. He understood that he needed to grin and bear the last few cycles, and seemed determined to let the whole thing play out. He talked in story format terms: the good guys were the chemo meds, the bad guys were the cancer blasts. The setting was his body and the main problem was the fact the blasts wanted to take over his blood and leave no room for the heathy cells..the other good guys. The solution was to keep taking his meds and deal with the pain as it was okay pain....he didn't like it but he knows WHY he has it. Boy, was I listening to this with pride and wonderment!
So Sammy has turned the whole thing around and created a battleground inside his body where, basically, a video game is going on. He has learned to handle this in his own, unique way, and has accepted things on his terms. I have gained strength from this; I have a much more positive attitude than I have had of late...fearing the toll on Sammy was unfair and not what I had in mind for my lovely child (well it still isn't, but I am not looking at it the same way).
Sammy has taught me to be thankful for where we are now. I should have always been thankful...I actually was at the beginning of the journey...but stress took a hold of me and did some funky stuff! The nurse at clinic this Thursday was really impressed by Sam's blood counts. All the doctors are too on a regular basis. THIS shows he is doing very well as far as treatment goes. I an SO VERY grateful I am in this place, and I know Sammy shows no signs of losing.
Next time I see Sam limp, cry, or struggle with his hands, I am going to try to reflect on his story: the good guys are beating up the bad guys and the setting (his body) gets a little battered in the process...but the good guys are winning and the setting will be okay. Sammy sees a video game....I see a hero.
I am so impressed with Sammy's resilience (and YOURS). The fact that he can translate his treatment to the good guys/bad guys completely inspires me. What an incredible way to describe what is happening on the inside. I'm thinking that this is something that could truly help other children going through the same thing.
ReplyDeleteI hope your mum is enjoying her time and that you are finally getting some much needed rest.
You must be so proud of Sammy. Children can be so amazing, we can learn so much from them.
ReplyDeleteI think of you and Sammy often.
Take care
Children really are so amazing. Not only is he a trooper, but he is a visionary. He is able to create a story to help him cope and it's a story that can help you, too. He is a superman indeed.
ReplyDeleteI'm so sorry that Sammy is having rough symptoms, but glad to know he's taking it so well! And we like the "Chemo to the Rescue" book, too!
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