journey-into-fall-louisville-kentucky1Hold tight for a long rambling one… and my apologies; it took me a week to wrap this together.

On Tuesday, May 28, Mark and I went to St. Louis for his weekly check-up. Actually the whole family went. School’s out, so we packed up the kids and their iPads and books and took a family trip to the doctors. We always go in with some trepidation. What are the blood tests going to reveal this time? We have our list of questions. We question every little twitch and tingle. Is it a result of being a living human or is it something related to the transplant or MDS? Is this normal? Is it a problem?

Unfortunately, there are issues. Mark didn’t get to be the lucky 1% that sails through this with no problems or complications and simply recovers. His GvHD of the gut causes problems. His platelets are being stubborn.

So anyways, Stephanie, the ANP, was pleased (if that is the right word). Blood counts were stable and although the platelets have not miraculously bounced back, they didn’t go down either. There was very slight improvement, from 39,000 to 40,000. Stephanie was happy with the fact they didn’t go down, but is still being cautious because they really need to go up.

To help boost the platelets, she wants him to have an IV-IG infusion. IG is immunoglobulin. (Darn, I knew I wouldn’t be able to spell that right the first time. Thank you spell-check.) This infusion seems to also do a host of other good things, as Mark found out while he was researching it.

Of course, it couldn’t be a simple here’s a pill, take it. It is an IV-infusion. It takes four hours to infuse. It is ridiculously expensive, so insurance doesn’t like to pay for it. Therefore, the insurance company is dragging their feet in approving it. Stephanie ordered it a week ago, and it is still pending approval. In fact, it is so expensive; we can’t just charge it to a credit card and hope the insurance company will reimburse us.

Then there is the 4-hour infusion part. When we went to the doctor’s on the 22nd and Stephanie was concerned enough about his platelets to order procedure, they had a hard time scheduling it. So originally we had the doctor’s appointment and labs on Tuesday and then they wanted us to come back on Thursday for the infusion. At a 1:00 appointment. Let me spell out the problem (okay, it isn’t a problem, more like a major inconvenience). It takes a little over two hours to get to Siteman where the doctor and treatments are, and then two+ hours to get home. The kids are out of school. We don’t have a regular babysitter. So they want us to go to St. Louis twice in one week. The infusion would be from 1pm to 5pm, and then we wouldn’t get home until after 7pm. With kids. Bored out of their skulls.

If it was just Mark and me, it wouldn’t be quite as much of an issue. Yeah, we would probably still grumble. But expecting the kids to put up with that much driving and sitting around is a bit much. So then we have this brilliant idea. Why couldn’t we just do the infusion at Mark’s oncologist’s office in Columbia. Sure, they are not the primary care for his MDS. But, they are a cancer center and perfectly capable of administering the infusion. I could drop Mark off, tend to the children, and pick him up when it was done. Guess what the problem is. Go ahead, guess. I will wait.

Insurance. The local office would have just as hard of a time getting approval as the St. Louis office, plus they are at least a week behind in requesting approval.

So anyway, on Tuesday, we were talking about this with Stephanie and asking if there was anyway to make this more convenient. We even asked if they could do it while we were there (this last Monday). Sure, they could schedule it for 6pm. And it would be done at 10pm. And then we wouldn’t be home until after midnight?  With the kids? *facepalm* I guess we could have arranged to spend the night in St. Louis, but neither Mark nor I was crazy about this idea at all. Luckily (?) they hadn’t received approval yet and didn’t know if they would within the next two days, so she postponed the treatment until next Monday, when we have to be there for the next doctor’s visit.

That gives us a little time to make arrangements for the kids to be taken care of and not subject them to forced boredom and patience. They are 10 and 11, there is only so much you can expect.

So where does all this leave us? Overall Mark’s current condition is status quo, with the exception of the platelets. The rest of his blood counts are stable and in mostly normal ranges. No idea why the platelets are being stubborn. Everything they are testing for is coming back negative, so that is why they want to try the IV-IG, to give the production a boost.

Oh, oh! I forgot to say… in all these tests, they did one to test the number of donor cells vs. his own cells that are present in his blood. Results were 100% donor! Yes, that is a very good thing.

The Graft vs Host Disease of the gut is still present and his still has to take his super expensive medication. Talking with the pharmacist, we found out that the drug would cost in the thousands. Per month. Without insurance.  Uh, Yay! Insurance! Okay, yes Yay! Insurance. Without insurance covering all of this, we would be so screwed. To put it politely.

Back to Mark. He has good days and bad days. Good hours and bad hours. A lot of the time he feels cruddy. Nothing necessarily specific, just not good. Sometimes there is a specific ache, pain, tummy trouble, etc. And then we go back to, is this a normal human thing? A normal recovery thing? A problem?

We have also scheduled his Day 100 bone marrow biopsy on the 17th, which will actually take place a little after day 100, but whatever. The plan was to do it early, but then scheduling it around a visit to the Mark’s Doctor just didn’t work out. Anyway, the biopsy will give all of us a good picture of what is going on in body.

And, my goodness, I have babbled on. Have you missed me? Blame it on Mark, he asked me to write this one up. J

Again, thank you to everyone for you love and support, for helping us out financially or with your time. With you all around us, it helps to not feel like we are going through this alone.

Aloha and mahalo!

~terri

9 Comments

  1. Thank you for this update, Terri. Just ordered another load of pixie dust your way!

  2. Still rooting for you Mark! Terri, thanks for the update. Glad things are looking positive and keep those posts coming! It is reassuring to know what is going on.

  3. Sunbeam Magic

    Wow… lots going on and getting so close to the 100 day mark. Smiles. Perhaps you need some more fairy dust to get those platelets up ^^^ those stubborn little guys can’t ignore magic! lol Wishing and hoping and praying for better results! Sending the biggest treasure chest full of a mixed bouquet of Fairy Dust… Well wishes and hugs Sunbeam

  4. Yea Stemmies, 100%!!! Kinocking and sprinkling and praying for you. You told me you would be back and I have absolute faith that you will. You have come so far already getting close to day 100. You can do it, you can do it!!!! Stay strong both of you!

  5. And in case you didn’t know, Kinocking is even harder than just plain knocking! He-he-he