Monday, 13 April 2015

Low platelets!

So we're trucking along, Miss J's had a coldy type thing for a while, but she has had low lymphocytes so we know she's not likely to fight illness as well as she has in the past.

We had a follow-up with the cardiologist last week and he told us that her last bloods had shown slightly low platelets.  He also told us that the surgery list has been insane (which we knew) this year and that he didn't know when her surgery would be. Her heart is unchanged though, apart from some slight narrowing of the aorta.

The last couple of visits to the oncologist have been mid-morning which has meant that the bloods we have had taken downstairs before we see her have always been running late and she tells us the previous results and says she'll let us know if anything's amiss with today's.

Today when the nurse took the bloods she was in a rush and she didn't spend 60 seconds holding on or asking me to hold it while she did paperwork, she just put a swab and a bandaid on it and sent us off. It didn't take Jacinta long to chew the bandaid off, which resulted in a comedy of errors as I attempted to stem the flow of steadily dripping blood drops while getting a new bandaid open and keeping it away from her attempts to grab it and pull it off, because she didn't want it on!

We bled all over ourselves and the table at the coffee shop, but that's what baby wipes are for, isn't it.
 I mentioned this to the oncologist on our arrival and she looked at me askance and asked a few more pertinent questions. She mentioned that last time's bloods had platelets at 90 and that this could have just been because she was sick at the time, but that if this time's were lower again that they'd have to do a bone marrow aspirate to rule anything out.

She did of course insist that it would be so incredibly unlikely that she could have relapsed since "Downs kids" are exquisitely sensitive to treatment. (She always says that. I haven't really fully cleared up what she means, but I know it means that the cure rate is pretty much nearly 100%)

Still, she asked if we'd like to hang around for the results. I said we certainly would, and we went downstairs to the Parents' Resource and Respite Centre to eat, move all the toys somewhere else and have my phone cease working.

While down there I had a think about the possible revised plan for if Jacinta had relapsed. It really doesn't get much to get the cogs ticking over so you're making plans for how the day, the week, the month and the year will all get organised if the result comes back one way instead of the other. I pretty much had it sussed which day the bone marrow aspirate would be, how we'd organise the children, what food I'd leave in the freezer etc. All except how we'd break it to the children.

We went upstairs again, 45 minutes later. We ran into two other post-treatment patients. It was lovely to have a chat and to be able to tell someone who gets it that we were waiting on results to see if we'd need another BMA.

Between patients the Oncologist came out and said the results are perfect.

Big. Sigh. Of Relief.

As a side issue, it came to my attention that when they do open heart surgery it is common practice to remove some or all of the thymus gland, the one responsible for lymphocytes. The thymus builds the immune system. It's big when you're little and it shrinks right down by the time you're fully grown. I had no idea if Jacinta's thymus was in or out. No-one mentioned it. When I saw the Cardiologist the other week I got him to check and it turns out Jacinta's was partially removed. Thank goodness she still has some to work with! He says it's not common practice to remove it completely thesedays. Nice to know!

So we're working on getting her better so we can start doing the IAHP stuff now that Daddy's done the course.....but that's another post.

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