I pray that today is better than yesterday and tomorrow is better than today. 🙏
It has been a very difficult week for Israel. We attended a routine visit at CHOP where Israel was given Pegaspargase, or Peg, a version of chemo that can cause negative reactions. Israel has not received this chemo since his original diagnosis. Upon arrival Israel’s port was accesssed, which he still struggles with. We were not informed by the nurse that they first gave him Benadryl as a way to offset any adverse effect of the Peg. He immediately starting saying he felt weird and went to lay in my wife’s lap. When we inquired they told us that Benadryl had been given. I told the nurse Israel does not respond favorably to this medication and she should have let us know in advance. The nurse apologized and said she should have informed us but she was under the impression we already knew.
Let’s rewind for just a minute. You may recall several weeks back Israel had an adverse reaction to the anesthesia and I literally had to restrain him for 2 hours. He fought, kicked, screamed, and bit me with his eyes closed. He was in a stupor unaware of his surroundings. Israel was feeling out of control and he kept trying to get off his hospital bed but had no control over his body. If I let him go he would fall and almost cause severe damage to himself. If I held on to him he would try to bite me or scratch me and scream to let him go all while unconscious. Oh did I forget to mention that prior to his procedure the nurse attempting to access his port missed and poked him in the chest. Think about that, no lidocaine, no silicone, just flesh on a 4 yr old who is in total fear of needles.
So fast forward to his last spinal tap. I sit down with the anesthesiologist and informed him that we cannot have Israel respond the way he did the previous procedure. He makes the concoction that he feels will work best with Israel. We partner with nurses to look over previous procedures to see if there are any patterns in the successful attempts. I provide the anesthesiologist with my findings but ultimately concede to take his direction one final time. In the event this is unsuccessful we will no longer adhere to what they tell us without multiple opinions and our own parental intuition.
Here is the thing, you are the guardian of your children. You are the protectors of your household. We live in volatile times where the art of distraction is at an all time high. Why is that? Simple, a distracted audience isn’t focusing on the changes being made behind the scenes. How can you be? When your child has cancer it takes your every living fiber to stand up and be strong, especially when it’s a young child. Your child who trusts you and loves you but does not understand the process. The last few times Israel got his port accessed he said “Daddy don’t let them hurt me, protect me daddy.” You cannot imagine how deep those words penetrate my soul. I would give my life for my family but that is not the option I have been provided. Naturally I am going to question the process when my son is in pain. It’s not that I don’t trust modern medicine, it’s simply the fact that this is our sons health at stake. So the story ends well, he recovers from the procedure with an additional sleep agent that allows him to stay under until the effects of anesthesia are almost worn off. We prayed all the way up to CHOP and Rachel and I were so relieved when it was over.
This brings me to our most recent visit, on Thursday, for the Pegaspargase. Israel is already reacting strangely because of the Benadryl. They give him the Peg, again unbeknownst to us, and he moves from a sleeping state to standing upright with his hands on his throat, choking uncontrollably. He starts throwing up but his throat is closing up, due to a reaction from the Pegaspargase. It all happened so quickly even the nurses seems nervous. We have a doctor in front of us who is trying to gain control over the situation. As I look at the tears flowing down my wife’s face I hold Israel and sofltly reassure him that everything is ok. The steroids are administered and his Peg is discontinued, shortly after he begins to level out. Had they told us the Peg was being administered and what to potentially expect it would have made the situation slightly more tolerable. Instead, we all had the scare of a lifetime and Israel is the one most scarred in the situation. He wants it all to be over, he wants to stop the suffering, he wants to stop the pain, he just wants to be a normal 4 year old boy.
Many of you may have seen my wife’s post about decorating for Christmas early. When we ask you to put up your holiday decorations it’s not so Israel can have an early Christmas. Our struggle is day to day. We look for ways to move beyond moments of pain and fear to get to next because it’s how Israel best copes with a difficult situation. Your participation in decorating shows Israel he is not alone. Every time he faces struggles he is reassured that his suffering is filled with purpose. Israel is reminded that this too shall pass. The hope and faith that comes with this holiday is what Israel deserves. No child should have to suffer in this way and no parent should have to witness their child go through this pain. Stand up in unison with us this Christmas. Stand up for the innocent! If you decorate early post it to our feed as we share the photos with Israel. If you feel so inclined get your neighborhood to decorate early. If we are in close proximity we will bring Israel to see the decorations. Israel is moving into a blackout period where his ANC and white blood cell count will be to low to fight against potential threats. He will be inside during this time however we can bring him out in the car to drive through your neighborhood.
If your looking for a worthy cause to donate this year you found it. You can go to www.gofundme.com/israelscure
