Thursday Numbers - end of May

Tense, I am still tense as this thing drags on. The numbers today were similar to two weeks ago.
Some lower some higher.

White cell 2.7 down from 3
Hemoglobin Reds 9.9 up from 9.4
platelets 53 down from 56
neutrophil 1.7 down from 1.98

Two weeks ago we were more optimistic. The doctor said to take into account that the tests were done at a different lab. Tom asks that as long as Riley stays on his cyclosporine then the numbers wont fall off. The doctor tells him that is correct. Which makes it all the worse since it is an artificially supported level. I ask when do we consult about our other options, i.e BMT (bone marrow transplant). He says six months. Tom qualifies that by stating " six months from treatment?" "Correct."

So, we are looking at end of August for the big consultation. These numbers are just not good enough. Riley had the ATG in February around the 18th it started. We were discharged after 10 days. Six months puts us at August. We will see the doctor once a month through the summer unless some sign indicates we need to take Riley in immediately.

From green light for BMT the doctor has previously told us two months to transfusion. I think we would just have enough time to squeeze in our family make a wish trip in October, for which we have been approved. Get back from that trip and then start the process. Two weeks of chemo then four weeks in hospital recovering. We would be out and done before Christmas and be able to put this year all behind us.

We knew from the beginning from all the materials we read that the ATG was a long shot for Riley. Only 20% have full recovery and those are from the mild cases not the severe critical that Riley walked into the hospital with.

So now we continue to be patient. We let insurance have its six months of trying the alternative. Then we kick into gear. We will have a fun filled summer and enjoy the moment. Having spent 10 days at the hospital we know somewhat what to anticipate. It wont be fun. It will be horrible. But it has a beginning a middle and an end. Its my favorite kind of project. Once we do the BMT, we just have to bide our time. Recovery hopefully will be nothing like the two weeks of Chemo prior to treatment. Those two weeks of Chemo will be the hell. Afterwards, Riley will just be hanging out in isolation waiting for his body to recover, restart, and recuperate. Protected from the world and the environment. Then he can get on with his life. And so can we.

The doctor said do the plane trip just no acrobatics. No extra G forces. Loops or upside down flying can bring on nose bleeds, ruptured capillaries in the eyes. Tom mentions nausea and vomiting and the Doctor says yes and with blood also in the vomit, lovely. So this weekend will be a pleasure flight only. Enjoying the beautiful vistas of the northwest. Tom says its an hour flight up to Willamette falls and down the Willamette River. Now that is my kind of flying, gentle all the way.

Our trip is still on, we just have to be sure to take the drugs with us, since they keep the levels up. We are going to have fun. I am pulling Riley from camp a day early so we can have his numbers right before we go and he can have a day of rest before our flight.

Perhaps the numbers will climb a little more before we go. I just wish they had kept climbing at that steep acceleration we initially saw. I was so hopeful. This plateau was just what we didn't want to see so soon.

The teacher asked about fall. Our plan is to start Riley in high school as a normal attendee. If numbers are good he will just get on with life. If the numbers are similar to today, we will get September for sure and half of October in school. Then depending on his numbers, November will be BMT.

On the ride home I talked to Riley about the numbers and the potential time line. And all the exciting fun things we will be doing this summer. Riley mentioned that November was his birthday month. I pointed out that it will be like he was reborn again for his birthday, all well and ready to move on with life. Its all hypothetical at this point anyway. Maybe the numbers will keep slowly climbing. But two weeks of little change, after such steep improvements the two weeks previously, is grounds, not of concern, but awareness.
It does not catch us off guard, but the disappointment weighs heavy in my gut. I had such hope even though we knew the odds.

Chemo is a heinous treatment almost worse than the disease. But I remind myself it has a beginning middle and an end. The end being the most important. You just have to count down the days and get it over with. Two weeks, two weeks goes very fast in a life time. If or when we do it, it will be put behind us and be done. This time next year, this all will just be a faint nightmare not to be repeated in our lifetimes. Its just the waiting in between that drains the body.

I am not one to put off a project when I want to get it done. Tom has been a fountain of patience throughout this process. He has known from the beginning the probable outcome. Having worked in the corporate system he knows the waiting game, the political process that must be adhered to, because that is how the system works. He read the same materials I read. Being an engineer, he knew the odds even better than I. I will be in denial up until the last minute. Lets enjoy what we can while we can. He will play the waiting game, but the second the time is up, he knows the course we will be taking.