It has not been the easiest time, but we are Going the Extra Mile. We spent about 2 weeks, at the onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital). During those 2 weeks, he had 8 high dose steroids treatments and 1 high dose IVIg treatment. Once we were released, we went back a month later, and we got the first Rituximab treatment. In 2 weeks, we went back to get the next dose of Rituximab. We will go back in January to get the 3rd dose.
Round 2 Rituximab
When Hunter had his second round of Rituximab, his first-round was 2 weeks prior, and it did not yield the results that we had hoped it would yield. We did not see Dr. Sweeney (or any doctor for that matter) during that first round. This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.
I was able to ask many questions to Dr. Sweeney. I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand. He has a heart for children. Any single man who knows the theme songs to ALL the Disney movies and ALL the characters of each of those movies is a man who is in tune with his audience of kiddoes.
Trying to Understand
I understood that we would know if this course of treatment was going to work within the next two weeks. Hunter still has residual steroids in his system, as well as, IVIg. In two weeks, though, all of that should be out of his system, and all remaining B cells should be killed off by this last Rituximab treatment. Then….we will either see improvement (aka remission), or we will need to rethink the course of action that we need to take.
These doctors do not know going the extra mile until they have had a child who has struggled. I will not back down and my voice will be heard.
Staying Healthy is a Priority
In the meantime….we know his immune system is comprised.
To help with that, when we are out in public or around sick people, I went on the hunt for some face masks for children. Sadly, I could not find any. I did get a few adult-sized ones from my son’s orthodontist, but nothing that would fit his face. Finally, I went to my “go-to” place…Amazon. Oh…I love Amazon. I found what I was looking for and they work perfectly (though he hates them).
My next course of action was to help ease his anxiety
about going to the hospital. Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/manhandled until I just about went all Hulk on them. Then…we met the IV team. Oh. My. Stars. Let me just tell you….they are all angels sent from heaven.
Going the Extra Mile
Maybe I went overboard….maybe I am coddling him. He is 3, my baby, and he did not ask for any of this to happen. At this point, the child will get whatever he needs to help him through this process.
What the Meds Do When they are Needed
The steroids were to get the inflammation down. The IVIg is immunotherapy, and it replaces the good stuff in his body. Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain. The first dose killed off the majority of them. The second dose killed off the baby ones. We were hoping remission would come after that second dose, but sadly, it has not.
Not Much Change
Hunter still walks around like a drunkard, basically. He walks with his feet out, like a duck to steady himself. Stairs are still a challenge. Mornings and after naps are still filled with uncertainty as to how he will be. He is more tremulous during those times and when he is doing something that has focused movements with his hands (i.e., holding a fork/spoon, pencil, coloring, etc.).
He is still highly emotional. I know that he is 3, but it is almost like have 100 kids that are 3, at the same time. It is exhausting. He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well. There is not an in-between. His eye is still turned in, and they still twitch….all the time. It is so weird.
We start monthly IVIg treatments next month. Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours. We would like to get a mobility service dog for him. Also, we still need to raise money to redo our downstairs bathroom. This will make it more accommodating to him when/if the need arises for constant use with his walker. I will continue to go the extra mile until people know me by name.
Beads of Courage
Time to Get Over Ourselves