So i was doing good at blogging – i think i had three straight days last week maybe? And then it just got hectic around here again. After last week’s visit, lots more phone calls ensued, results were faxed hither and yon, consults were given back and forth and…here we are. Most notably what we came away with on Friday afternoon were instructions from Kendall’s neurologist to have a specific blood test re-ran ASAP – an AFP tumor marker. This will be passed on to genetics when we go in on Tuesday afternoon to meet with that team. No idea if they will want to pursue it further before test results are back on that, or how long the test will take to come back. Basically it is a test that only measures one thing – liver function. When it’s elevated, about 95% of the time it is due to a liver tumor. There are a few very rare causes of it being elevated, and most of them involve autoimmune and/or kidney function issues. Right now I am comforted by the fact that Kendall’s levels are not astronomical. For a level that should be “0”, it’s not comforting that hers is well above that, but I think it would be MUCH higher if we are actually dealing with cancer.
That’s what I tell myself anyways.
It doesn’t really make it easier to swallow though on this long weekend. At the very least it indicates that there is some degree of liver damage as a cause of all of her other metabolic crises (as I was worried about a few months ago when it became obvious that her body was overcompensating for its usual wonky cycles.) There were other levels in her bloodwork which were very off, indicating that things are definitely not as happy sunshine as they appear to be when you see this shy little ball of cuteness out and about! And in spite of how badly i think all of these bad results suck – I remain hopeful – that maybe NOW someone will have the pieces to the puzzle that they need on how to diagnose her, so that we can start to fix her. Maybe these results will be the arrow pointing to JUST the right part of the book for someone to remember something about this in their Rare Diseases 301 class.
The weight of this latest news was weighing so heavily on me yesterday – just building in intensity, and being added onto by worries over the money for gas for all these trips up north, the fact that she was JUST FINALLY starting to return to normal after the vaccination ten days prior, knowing that we are going to have to make adjustments to the fact that she will need a special stroller – all of these things just kept piling on top of each other and i was very very teary by yesterday evening. Woke up even more teary this morning. And I knew that it was too big of a burden for me to carry alone. I knew I had to tell people who would ask – how are things this week? how is kendall? – I knew that to keep it bottled up would only end up hurting me more. So I told our pastor, who was able to share it with the church, and somehow in that act, I began to feel a little lighter about it. I know it’s not like it all magically felt better – but somehow, the act of giving voice to it made it less scary. Making a mental choice to not carry that big burden by myself made it feel lighter. I know we are surrounded by amazing friends and family at our church, and that they were picking up pieces of the burden to carry with us. It was an amazing feeling.
And we’ve been able to come home and try to enjoy every minute of togetherness that we can as a family this weekend. I am able to put thoughts of medical records and lab reports out of my mind, able to focus on time with the girls instead of appointments with genetic counselors and immunologists. So thank you to every one of you who have helped pick up a piece of that burden by praying with and for us.
BUT – in typical Atkinson household fashion – Kaylen was once again complaining about her “ears hurt” (a common complaint over the past few weeks, but i can see no evidence of infection or any cause of pain, so have just chalked it up to a crazy toddler thing). I looked in her ears with the ear looker thingy that I got when Karissa was averaging an ear infection a week back in the day, and WHAT DO YOU KNOW…..peeking around the corner in kaylen’s ear was a LARGE BLUE OBJECT. I’d like to hope it’s just her tympanostomy tube pushing its way out (as they are prone to do after a year or two), but it has a distinctive blue color and a point to it’s tip – which is NOTHING like what karissa’s tubes looked like.
So yay – add yet another appointment on to the never ending carousel of docs for kaylen to have outpatient surgery performed on her ears to remove whatever random object is stuck in there! At least we found the cause of ear hurt finally! You know, sometimes you just have to laugh because otherwise you’d be cryin’ your eyes out, right?
So that’s our weekend. Trying not to worry too much, trying to enjoy every second of chaos we can in the midst of emotional upheavals.
And i’ll leave you with this little ray of sunshine – kendall being tickled by ben, with the most beautiful sound of giggly laughter i’ve ever heard.
Hope you have a wonderful holiday weekend!!!
terra (and the whole rest of the gang)