Our second PEG was today.
What can I say? It was competely awful. Just like the first time (see 8/29/11). If you want to see a easy going, go with the flow (not to mention slightly claustrophobic) 5 year old go berserk, get four people to hold him down so an intramuscular shot can be given in each thigh. I am pretty sure his screams echoed through the clinic. It wasn't the pain as much as the holding him still part. How scary would it be if you were 45 pounds and four grown adults were holding you at each limb?
On to the bright side... No more of those in our future. In addition, there was no allergic reaction. We had to stay at the clinic for two hours after the PEG to monitor Adam for any reaction to the injections. The medical term is PEG L-asparaginase. All cells in the blood need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot. The asparaginase injection breaks down asparagine in Adam's body. Since the cancer cells cannot make more asparagine, they die. Basically, this is a crazy reproduction enzyme. It is amazing the things going on in Adam's body and all we see is a normal kid. He is slightly pale (more than usual, of course) and his eye lids are a little dark, but otherwise you wouldn't know that there are enzymes and chemicals going to work in his blood!
A common side effect of the PEG is an allergic reaction - swelling or hives. This is something simple that kids would take Benedryl for. That didn't happen. Nausea, Diarrhea, unusual bleeding or bruising, abdominal pain (from enlarged pancreas), dehydration, mouth sores, and/or skin and eye yellowing are all side effects that they look for after the PEG (and in the days to follow). Adam was definitely fatigued yesterday (remedied by breaking out the old Nintendo and Duck Hunt!), but he did not have to deal with any of these side effects. Praise God! And so far this morning (since I am technically writing this on Fri), he looks good to go!
So, we have had a low key week. Not a lot of energy and needing daily naps and early bedtime, but Adam is still plugging along. We should hear about his blood counts today which will tell us how to plan for the Christmas Day festivities. But there is no doubt, the kids will definitely have Christmas! I should mention, they don't know how to read a calendar yet... Christmas could be in one day, three days, or in a week and they wouldn't know the difference :)
I am starting to feel the stress settle down in myself as well. The anticipation of this phase and this injection was just about the breaking point for me. Luckily, I have had prayers to lift me up and I wrote God's promises in a book that I carry. I think I'll save you from the dark places my brain was taking me the last few days, but I am feeling like celebrating today! An idle mind is an opening for Satan to move in, he knows our weaknesses and uses it for prey. I have not been putting on my armor (Eph 6: 10-18) nor seeking refuge as I had before. What I really needed was to count our blessings because it is really easy to only see the trials. What Adam is going through is like the flu compared to some of the other kids we have met at clinic. In addition, we are not alone - especially not Adam! Some people have to travel miles and miles for access to good healthcare and they do not have family/friends nearby to help. We have peace (that we will have everything we ever need), hope (in God's greater plan), and joy in life and health and that we get to celebrate Jesus this week!
Merry Christmas to you. And may your holidays be filled with joy!!
(Adam at 7:30 this morning - ready to go. Where? We don't know, but he's ready!)