This is less of a blog post and more of a vomit like update. Please forgive any typos and lack of eloquence.
WHERE IS THE ERWINAZE!!!
Two weeks ago Ben was scheduled to receive a dose of asparaginase. For most lymphoma/leukemia kids that is not an issue.
Ben, unfortunately, is not most kids, and he seems to have developed an allergy to the PEG. That means he needs a different form called Erwinaze. Maddeningly, that drug is in a national shortage due to manufacturing process problems. There was supposed to be a release in late September. It is early October, and we are still waiting.
We have done just about everything possible to try and squeeze Ben’s dose out of the air, and there just isn’t any to be had. I can not explain how frustrating that is. It is not very often in life where you run into what is essentially an immovable, impassable, obstacle.
So, we wait. . . and wait. . . and wait. But, what’s that? is there another option? Maybe.
There are a couple of other kids at CHOC iwho are also allergic to the PEG, who have doses of Erwinaze earmarked, but who are going through desensitizations protocols, hoping that they can go ahead and just take the PEG. If the desensitization works, then Ben may be able to get his doses from the ones that had previously been set aside. That would be incredible. Two weeks ago we were told that we should know if those doses are available about now. So far, no news. So, we wait. . . and wait. . .and wait.
After another phone call with the very nice contact I have at Jazz Pharmaceuticals, I can safely say that there are does in the US. That the FDA is reviewing them, and that the will be released. . .sometime.
So, we are in Erwinaze limbo.
Ben is schedule to take another run at desensitizing to the PEG-Asparaginase tomorrow. We’ve been praying that some Erwinaze will show up before he does. He did not technically fail last time, but it looked like it was goin that way, when miraculously a dose of the Erwinaze showed up for him.
Our fear is that he will start that process, not achieve therapeutic levels, and then the Erwinaze will come to market and he will miss the dose.
It is a very frustrating, anxiety filled, place to be. But with all that said there is a lot of joy in our home right now.
He is, after-all, just a normal kid
Ben’s immune system is relatively high right now, so he has had the chance to be a pretty normal kid for the last two weeks. He played with other kids (non-sibling) for the first time since his cancer diagnosis in May. He went to his bother flag football game, went to mass, and wandered around COSTCO with us.
Ben was like a little celebrity at Church. So many families have been praying with us. We received numerous messages from people who saw him out, telling us how wonderful it was too see Ben looking so good. It is hard to describe how important those little messages are to us. Being part of a community like ours, that really cares and walks with us. . it is the way Church should be. We are blessed by it.
And let me tell you, Ben was excited to go to COSTCO. He walked around like a kid a museum. It was pretty spectacular. He had to stop and look at everything, and the fact that Christmas decorations and toys were all on display just made it so much better! He has his eyes on some guns that shoot little foam balls. It is the kind of toy that kids love and parents loathe.
Pray that Ben gets his medication.
Pray that he stays healthy
Pray for our other kids, as they process and deal with all this.
Praise God, that Ben stayed healthy for the month his immune system was at or close to zero.
Praise God, for our second graders flag football team. We were not going to play and then we found out that my nephew is coaching a team with a buddy he has known since high school.
Praise God, for Make-a-wish coming to find out what Ben’s wish is
Praise God, for our dear friend Lisa, who is helping out oldest with Math
Praise God, for Mrs White who is gift to our second grader.
Praise God, for good friends who keep inviting me to ride mountain bikes. When life slows down a little I’ll get back on the trail.
Praise God for the many, many people who are praying with us. We are so grateful.
We have had some friends ask if there are any Saints we are relying on to pray with and for us. Here are the friends in heaven we’ve been going to the most
Dcn Bob Mueller - My Dad. Dad was a powerful man of prayer here in our midsts. In glory with the Lord, I do not doubt he still is.
Fr. Michael Scanlan - never knew Fr Mike on earth, but he is still making a huge impact on my life. Fr. Mike, pray for us. Ben’s middle name is Michael, after the archangel, but it is not coincidence that he was delivered a little early so I could go speak at the youth conferences Fr. Mike founded.
Solanus Casey - One of my dad’ best friends, practically my uncle, is Fr. Solanus’ nephew. He told me about Solanus a while ago, and I have sort of felt like he was part of the family because of that. So, I ask for his prayer often.
John Paul II
Archbishop Fulton Sheen