Side effects

Last weeks labs showed that George’s counts had dropped some. Not a ton but they dropped none the less. Today’s labs showed another drop. His hemoglobin is still at 10.3 which is good but it had risen to 11.2 a few weeks ago so it is a slight drop for sure. His platelets, although still descent, dropped to the mid 200’s. His ANC dropped too so he is back on Neupegen once a week to try and get his levels to stay high through the pandemic. For the past few months I’m sure you have noticed a change in George’s appearance. His face is always bright red and his freckles have really turned more into age spots. His skin is extremely dry and sensitive. He has had blisters come up on his face, arms and feet. Even though we slather him in sunscreen, he still gets really effected by the sun. He also has trouble with his eyes when it is bright outside. Well I knew that this was all side effects from his medicine but it was indeed confirmed today. He was immediately pulled off of that one medicine that was the culprit of all of these awful side effects. They said that within a week we should be able to tell a difference in the way he looks. I know that he needs to be on this medicine for prevention for all sorts of fungus, bacteria and viral infections but it sure is hard watching him go through so many negative effects from them as well. He is now just going to be on a smaller dose of a similar medicine and one that we can hopefully not be on too much longer. He did also take his last dose of steroids today. Huge praise. I am so excited about this. Next up is to get him off of the at home chemo that he takes daily. One day at a time but I will sure feel so much more at peace when that particular medicine is no longer needed. All of these side effects just come with the territory and so you have to just pray that he can not be too harmed by them and that they will also stop when he stops taking them. So as of today George is down to only taking 9 medicines a day. Praying so hard that this will start decreasing each week that passes. Wishful thinking but I’m still holding onto hope that I can pester the drs enough to let me start weaning him off of everything. You never know. They may just finally give in due to wanting to stop listening to me asking about it. Stranger things have happened. Thursday George will go into Wolfson Day hospital for a treatment. It is the one he gets monthly to help with the prevention of pneumonia. Big prayers for the continued protection of George and our family from the Coronavirus and any other illnesses. Big prayers for all of this medicine to no longer be needed for George. I love that all of the medicine has helped keep him so healthy thus far but my heart also yearns for him to be medication free to give him a chance to really heal. George has a wonderful and understanding dr so I know that he has George’s best interest at heart. He only wants to protect him and see him succeed. I am so thankful for that and for all of George’s care team. While at Nemours today we were treated to a wonderful backpack full of all kinds of art supplies from Art with a Heart organization. It is really the most special program that they have at both hospitals. We also were treated to a family meal provided from Chuys which coincidentally is one of our all time favorite Tex Mex restaurants. So tonight we will have our tummies stuffed full of delicious food, we will thank God for being able to stop taking a few medicines and will be pushing forward in our climb to health with our spunky and fun little boy. I’m sure you have heard the term Threenager. Well, this accurately describes George. To a tee. Lord give us the strength and patients to survive him at this age. We need all the help we can get. Who knew a three year old could rule an entire house? Prayers for safety on Thursday when we have to go to the main hospital. That is where all of the actual cases of CoViD 19 are. God protect us.
Do not forsake wisdom, and she will protect you; love her, and she will watch over you. Proverbs 4:6

 But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.  Psalm 5:11