Lists, interruptions and catching up

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As long as I can remember I have always been really good at making lists. Maybe not a great checker off-er but always dedicated to creating the list(s). Then came along Jack, and the lists became overwhelming long with the pressure to always accomplish. Well this past month we had numerous labs, procedures, appointments, infusions, and emergencies. On top of trying to play catch up (appts, house hunting, school meetings, laundry, etc). Lists, lists, and more lists. I remember the days where I started learning the value of scheduling (college and more so graduate school) I would get highly frustrated if something interrupted my day or threw me off course. Now interruptions plague my world of rare disease. I am constantly teaching myself new tools or skills to let go of my frustrations. And once I’m calm I’m teaching myself to focus on the immediate, be present. The distractions or off course events are becoming more easier to manage and/or handle when I do so. It’s on-going work in progress, I think it’s a continual process really – I’m not sure I will ever fully get there, but I’m not sure I’m supposed to.?

This week Jack started back on the harsh course of chemo since his antibodies titers have plateaud. On top of that we have been battling this new shunt and its effectiveness. His bowels seem to be the culprit now, so we are addressing them. So Monday was a Neuro appt which I left unsure if
this revision has resolved the problem??? And Tuesday we revisited the possibility of more shunt issues and after a long discussion we decided to move forward with his already 2 weeks overdo chemo course, made for a 17 hour day at the hospital. More MRI, X-rays and then infusions. Wednesday Jack received enzyme and IVIG, a 8 hour infusion day. Thursday he had his yearly cardiology appointment, 6 months late, which entailed an EKG and echocardiogram. And Friday more steroids and chemo. And in between all of this a lot of medications being put into his body.
It’s been a long hard week for all of us, but mostly Jack. Overall he did fairly well managing all the emotions and physical effects. He is sleeping on and off, to be expected with chemo but I still question his shunt!? We need to see a lot of improvement by tomorrow before we start thinking about his shunt again. So as we monitor him we try to make him laugh and smile when he is awake, sometimes difficult and sometimes real easy. Today has been challenging.

We did receive some good news amongst all the challenges of the week. Jack’s beautiful heart has remained stable over the past year and a half. Amen! And we received his latest GAGs testing and they are down more, still high but moving in the right direction. Speaking of labs, we did learn Jacks ALT and AST (liver enzymes) are elevated again so they will be closely monitored.

Last, a quick update on the JnJ journey. Please click and read.
JnJ update

Thank you everyone for keeping us on your prayer lists and checking in on our very special boy. Please keep them coming.
We are grateful for each and everyone of you!

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