New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Thursday, July 21, 2011

Normal Nathanael?!

So I know it's been quite some time since I've posted anything. So much has happened, and I'll have to write about all of it later...but I wanted to share some news on my little guy: last month he passed his ACTH stimulation test, which means that his adrenal gland is awake and working normally! After so many months of suppression (due to the steroids he needed to take to prevent other post-transplant problems) we knew it would take some time for his adrenal gland to begin to function on its own, and we are so thankful it's now working! What this means for me is that I no longer need to think about ever using that large intramuscular needle on his thigh to inject steroids at home because his body will make what he needs. Yay! After 7 months of sticking small needles into his thighs every week and 11 months of torturing him through weekly dressing changes on his central lines I am VERY thankful that this is one medical procedure I did NOT need to put into practice.

We also just learned today that for the second month in a row his IgG level is normal. NORMAL! Now of course, it doesn't SOUND normal to me, since for so many months we were adding IgG to his system, and our goal was to keep it over 600 (it was over 400 in June and is currently just over 350), but the nurse told us that it's normal to experience a drop in the level before it starts to rise. This is really exciting!

We have also witnessed Nathanael's first upper respiratory infection, and he seems to have handled it pretty well. We didn't give any medications (though his new pediatrician recommended some more natural remedies, and we added lithy tree oil to his water for a few weeks), and he continued to eat, drink and play pretty normally. (His sleep was interrupted by coughing almost every night for about two weeks, but now it's back to normal, in that he only wakes up after he's soaked his pajamas and bed.) We're pretty sure Brad had it first, then Jamison, then I came down with it about a month ago, and two weeks later Nathanael had it. However, three of us were diagnosed with and treated for bronchitis. Not Nathanael! Of course I am thankful that at present he is still not fully weaned, and since I had this infection before he did, he has been getting antibodies through milk.

Like a normal little brother, Nathanael wants to do everything Jamison does. (Sometimes it drives Jamison crazy, but I try to tell him this is part of being the older sibling...I'm not sure that explanation ever worked for anyone, but it's true!) He likes to play with the same toys, "read" the same books, sit in the same chair at the same name it! One of Jamison's favorite things to do lately is to hide. He loves to call out, "Mommy...come find me!" and then wait for me to look in several places before finally finding him. Sometimes he likes to hide under couch cushions, and I have to "give up" and say something like, "Oh well...I just don't know where to find that Jamison. I'll just rest for a few minutes on these nice, fluffy pillows." And when I fall down on the pile of pillows someone erupts into giggles and squeals with delight. Well, just recently Nathanael decided to hide on the couch. It was pretty cute. See if you can spot his little feet in the first picture before looking at the second one of his big grin. (Oh, and yes, that laundry is clean and waiting to be folded. At least it's clean!)

So there's a lot more going on at our house, but some things are still "normal". Besides missing church for 3 weeks (while the boys and I were sick) we are enjoying time with friends, going to the park about every other week taking Jamison to Soccer Shots every Wednesday morning, and going swimming when we can. (Did I mention that the boys LOVE the water?) We are planning for a few trips in the coming months: one to see Brad's grandmother, uncle and aunt in August, a trip to Myrtle Beach in September for the boys and I (with my mom, my aunt, and two cousins and their kids), and a trip to Cincinnati in October for a check-up, followed by a visit to Wisconsin to see my parents and extended family. It's daunting to think about so many hours in the car (okay, one trip will be by plane) with two little guys, but we are so excited to take them places. Our trip to Spokane next month will include three national parks and two or three great dinosaur museums!

The not-so-much-fun part of life in our house right now is that I have a fast-growing desmoid tumor that requires immediate treatment. I will have another MRI next Thursday (8/28) in Dallas, and will then take my first dose of daily oral Raloxifene (Evista) to try to stop its growth, and hopefully shrink it (and the three others that are currently dormant) into non-existance. So that's my big news. I'm not sure I'm ready to write about all of it yet, as I'm still pretty raw emotionally. (I cried for almost a week when we got the news.) I recently met a woman whose email address starts with "cancerblessings"...I told her I wasn't really there yet, and thankfully, she understood. Please pray for me. This medication will (at least temporarily) put me into menopause, and August in Texas is no time to start to have hot flashes. If this doesn't work in 6-8 months I will probably try Gleevec, and then would move onto Methotrexate and Velban (IV chemo given once a week through a mediport - which I would need to have surgically placed). I hate that this has to be part of my life for many reasons. I am grateful that we didn't find the new tumor during Nathanael's treatment. That would have pushed me over the edge. So please do pray, and please keep in touch with us. If you're around here, please invite yourself over, or invite us out. If I get depressed like the last time I was on chemo (2000) it will be hard for me to reach out at all. So I do need help getting out of the house and getting the boys out for fun with friends...and I need to take my mind off this mess!

Lots of love to all of you who pray for and support us!