From what I can tell, in about the mid nineties a drug called asparaginase was added to the protocol for juvenile lymphoma treatment. It was something of a game changer. By treating lymphoma in the aggressive treatment blocks that had been developed for Leukemia, with the addition of asparaginase, outcomes improved twenty percent! That took them from somewhere in the seventies to the mid nineties.
Imagine the difference in hearing “there is a seventy percent chance we can beat this” and “there is a ninety percent chance we can beat this.” Ninety is WAY better.
The form of asparaginase most commonly used is called PEG asparaginase. This form takes a game changer drug and makes it even better by attaching a protein molecule that allows it to sort of time release over six days. Instead of coming in for daily transfusions, a patient would only need to come in once a week. Incredible!
There is one issue with the PEG. About 20% of kids develop an allergy to it. They tell parents it’s not a huge problem, because even if there is a reaction, there is a back up form that requires more doses, but still gets the job done.
Well, guess what? Ben is one of the 20%. When Ben was given his second does of the PEG he broke out in hives, his ears and eyes turned red, and his throat began to close. Basically the scariest reaction to a drug a parent can imagine.
Like I said, twenty percent of kids have this reaction, so it was something the hospital was prepared for, and thankfully, there is another form of the drug, Erwinaze, that can be used. Sure, it’s a pain, because it requires more doses, but whatever, we are talking about saving Ben’s life. We will do whatever we have to do and count it a blessing.
Just one more problem, the back up drug is not available. Only one lab in the world produces it, and they have had some quality control issues that resulted in “particulate” being found in the doses that were sent out. So, this drug, that twenty percent of kids with Lymphoma or Leukemia need to go from a seventy percent positive outcome, to a ninety percent, is just not available right now.
So, if you are following along Plan A (PEG Asparaginase) and Plan B (Erwinaze) totally fell apart.
Because this drug is such a game changer the doctors wanted to make sure that Ben really was allergic to the PEG, so they gave it to him again, let’s call that plan C. And low and behold, he is definitely allergic. With little other option the decision was made to try and desensitize Ben to the PEG Asparaginase.
We are officially at Plan D. Nobody want’s to be at plan D, but here we are. To say that the last couple weeks have been emotionally difficult would be something of an incredible understatement.
You know, through this all, our hope has never been in the chemo. It is in the Lord. Don’t get me wrong, we are going to attack this cancer with every technological and scientific thing we can, but in all of that, and through all of that, we know and trust that God is in control. He is our strength. He is our rescue. Thank you for praying with us. Please join us in praying that God will overcome this hurdle.