We are Faced With So Many Decisions
With So Many Decisions to make, it is almost overwhelming. We have to weigh the pros and cons of each thing. How does A work with B and what if you throw in C to the mix, how does that affect A and B? Can they all play well in the sandbox together? What are the side effects? If A has a side effect, we give medication to offset that, right? What if C doesn’t agree with the medications to offset the side effects of A?
Confused? I am.
Which hospital? Currently, we are at UK Children’s. We are pleased with his current physician, but the drive is 4.5 hrs and that is tough. I have to schedule it on Fridays so Big Daddy can go with me. We leave at about 6 am and get home at about 12 am. It is a long hard day.
We have an appointment at the end of the month with Vanderbilt Children’s hospital. It is only about 2 hrs away. The hospital is amazing, but that is one of the places that Hunter was misdiagnosed at this hospital 2 yrs ago. That knowledge has put a sour taste in my mouth, to say the least.
I have no idea what we are going to do. We loved UPMC in Pittsburgh, but to travel that far away is tough. Doable, but tough. They had an amazing staff. Dr. Kavita Thakkar runs the OMS clinic and she is just so kind and good.
Port or no port? He is beginning to develop scar tissue from all the many IVs and blood draws he has had. We are going to have to do something and I’m thinking a port is what we need to do.
This will help with blood draws, his IVIG can go into it easily, and soon chemo (or plasma exchange). I feel like this is going to be a good option for us. What hurts my heart is I don’t want my 5 yr old to need a port.
Cyclophosphamide, Rituximab, or Plasma Exchange. I am almost 100% certain that Ritux is out. Hunter had 3 doses of that and it really did nothing for him. He has to have chemo or the plasma exchange even though he does not have Neuroblastoma. The longer he is the past the onset of symptoms, the less likely he is to develop cancer.
Basically, this is maintenance when he is “in remission.” He will have up to 6 treatments of one of these drugs. Any more after that can cause lasting damage to his body. Who am I kidding, we are pumping this child FULL of toxins…heartbreaking.
Part of this decision was made for us. In order to keep our current neuro, she suggested that we try to do the above (Decision 3) options at home. In doing that, we would only need to go to Lexington every 3-6 mths. Sounds good, doesn’t it?
It does until it doesn’t.
We thought we were good to go with having infusions done at the house. In the 11th hour, the company decided they would not do it. Their reasons? 1. He had convulsions (Uhm, no. He has tremors. Convulsions and tremors are not the same things). 2. It takes too long. They wanted to push it in 3-4 hrs and this is a 6-7 hr push. I will not yield. 3. The doctor knows *nothing* about OMS. Well, sir, no you don’t…but you can learn.
Now we are hearing they want to train us on a different method of infusion, at home. We are supposed to meet with them at the end of the month to discuss the pros and cons of this approach.
I am not holding my breath.