UPDATE:
Most of you may already know that yesterday’s chemo treatment didn’t go well. Gray had two separate, very scary allergic reactions to the chemo that he got Monday afternoon. They finally decided to stop that particular type of chemo (PEG asparaginase) and will not give it to him again until they consult with his primary oncologist when she gets back from vacation. He will go in for an anti fungal infusion and more chemo tomorrow, but a completely different kind than the one he got on Monday. He is feeling so much better today. Thank you all for the prayers and words of encouragement.
For those of you who may want more than a brief update….I’m going to bear my heart and soul. A small part of me feels embarrased about being so open, but writing about some of the things that Grayson has experienced has been very healing and theraputic for me. It’s almost as though I’m confessing my sins, it helps to unravel some of the pain and anguish that often times builds up inside of me because I’m trying so hard to stay strong for Grayson and not allow him see that I am worried or sad.
It feels like it was just yesterday that I was holding a tiny, newborn Grayson in my arms and completely and whole heartedly admiring every fiber of his being. As I would rock him to sleep, I would look at him and just cry because I loved him more than life itself. It was in that moment that I realized that I was his protector and that I would die before I let anything bad EVER happen to him. Well, that day came in September when he was diagnosed and plenty of bad things have happened to him since. I know that this situation could be so much worse and I’m so thankful that it isn’t. But that doesn’t take his pain away. And the fact that I can’t take it away either kills me inside. Lance and I would take his place in a heartbeat if we could. But we can’t, so we do our best to comfort him. I’m so ready for this nightmare to be over. I still mean every word I wrote last week, but that doesn’t mean that there aren’t going to be moments of weakness for me when I question my sanity and wonder how in the world we going to make it out of this.
After a very long day at the clinic, Gray and I were getting in some much needed snuggle time before bed last night. I asked him what he was feeling when he was having his allergic reaction to the medicine. I don’t feel comfortable sharing exactly what he said, but it struck me to a core. Despite my desparate attempts to shield him from learning the severity and potential outcomes of his disease, my innocent little baby has discovered just that. As tears rolled down my face, he looked up at me with his big blue eyes and calmly said, “Mommy, don’t worry. Nothing is going to happen to me.” I held him as tight as could and didn’t let go until he fell asleep, all the while silently bawling my eyes out and wondering what a truly horrible feeling it must be to be only six years old and to have been faced with such scary, traumatic ordeals. And yet he was so calm and very matter of fact. There is no doubt in my mind that God holds Grayson in His loving arms and gives him the strength he needs to make it through this. Yesterday was a minor event with a huge impact. My heart still hurts just thinking about the things Gray has been through and the things he still has ahead of him.
I saw this bible verse last night after Grayson fell asleep and thought it was quite fitting for our situation: “The Lord will fight for you. You need only be still.” For seven months, I’ve put on this strong front because Grayson needs me to be strong for him. I had a much needed breakdown last night. It allowed me to see that I am only human and that without prayer and faith, I am nothing. My heart is still hurting so badly for Grayson, but I have someone who is much stronger than I am in my corner to lean on and to give my troubles to.
I leave you with this…there are a few reasons why this blog is called When Skies Are Gray:
1. His name is Grayson.
2. Throughout this ordeal, we have been through some dark and cloudy times.
3. I used to to sing him this song every time I would rock him to sleep:
“You are my sunshine, my only sunshine. You make me happy when skies are gray. You’ll never know, dear, how much I love you. Please don’t take my sunshine away.”
He still asks me to sing it to him. I can barely make it through the song without crying. The day that Grayson was diagnosed, I begged God not to take him from me. He hasn’t yet, and I have faith that He won’t. You see, I know Grayon is going to grow up to be something amazing. And I’m the lucky one that gets to say, “That’s MY son.”
Kalee
hugs!!!@
. It was a decision that I hated to make, but the fact that in spite of everything we’ve tried he still hasn’t gained weight and knowing the rough road that lies ahead with his next phase of treatment we went ahead with it. In a little over two weeks, he will start Delayed Intensification. It is a 60 day treatment cycle. But anytime there is a drop in counts, he will be delayed on getting his chemo. And I’m guessing there will be lots of those delays since he’ll be getting about 6 different types of chemo on a rotating schedule. He’s had all but one of the types of chemo thus far, and from all of those he’s experienced leg pain, muscle weakness, extreme nausea and vommiting, and just flat out misery. As far as I’m told, this is the phase that will make him feel the most crummy. Just what you wanted to hear, right? Wrong. So on that note, we need lots and lots of prayers. It is our hope that he will finish DI by August so that he can start the maintenance phase, which is chemo that he’ll be taking orally at home. And even though he has to do that for THREE YEARS, that is the light at the end of our tunnel at this point. Because hopefully by then, Grayson can finally begin to live a somewhat normal healthy life.
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