Lack of sleep has really taken its toll on me. I've kind of slipped into survival mode. It has really made me see how important sleep is and how much better I am when I am sleeping well!
School is out and although its cool and rainy today, I like the break from the heat. We've already been swimming lots and I'm proud to report I've gotten my hair wet all but 1 of those times :) Sometimes, oftentimes, as a mom its easier to sit and observe than get in there and be with them. Totally worth the gross hair.
Spent some time on the phone yesterday getting things in order for next week. Another hold-your-breath time coming up.
Tuesday Ruby has an MRI. She'll have to be sedated. This will be to check her head and neck. At the same time/place we're going to have another swallow study (done with x ray) for Annie. Trying to be efficient here people...and have to take less trips/babysitters/etc. Wednesday Ruby will have a PET-CT scan, appt with Dr Holly, and possibly another infusion of Opdivo (Nivolumab). One of my most very least favorite things is having Ruby sedated. Its scary to see your child lifeless. Ruby also tends to wake up and have to be given additional meds...which then takes her forever to wake up and/or she is ultra grumpy and mean.
Thankful that we are here though. When I think about last year...we had just heard Annie's heart beat for the first time, found out the Opdivo didn't work (or maybe it did), and had Ruby's Rally. I felt like cancer was a death sentence for our angel, the 3rd musketeer, our Ruby tube squeeze. I had no idea if she would live to meet her baby sister. Sigh. She did. And we are here and together.
I have been better at embracing that this cancer theme in our life may be here indefinitely. I've met a few other moms of melanoma kids. We are planning to go to the Melanoma Research Foundation pediatric summit in Colorado in September. So far I think 17 or so kids(and their families) nationwide are registered to go. In November I'm hoping to take Ruby to St.Jude for a 2 day melanoma clinic to have them look over her case. More just to get another evaluation, maybe learn something new, and provide any information that may be helpful to future patients like Ruby.
Everything seems to have been pretty good within our family the past year. Lately though I wondering if maybe the craziness of our life is manifesting itself here and there. Lack of communication, more crying, less peace. I haven't written lately in part because I don't want to spill my guts here. It should be to my journal, Mark, our family. I don't want a pity party. I do want to be real. You get the gist.
So for now I will focus on the things that keep me grounded and do my best to keep on keepin on.
this was ultimate survival mode photo...Mark was out of town one weekend (over our anniversary-we've made it 12 years hooray!) and Annie was up lots and lots in the night.
6 months old
she looooved having aunt b come visit
dinner w my neighborhood girlfriends was more than awesome.
amazing food and I nearly peed my pants from laughing.
wonderful party for this womans daughter, now 18 years old,
who has been fighting to stay alive her whole life
Dr Holly and her son were there!
Sunday morning before church
road trippin it to St.George
petting a wild tortoise
my best efforts at getting us all in a pic at the park.
it was hot.
gathered at the Baking Hive to meet a new friend.
This momma is inspiring. Her daughter has had cancer her whole life, relapsed 4x.
Jane o, love her much.
best.teacher.ever.
soccer party fun.
love that Jane loves soccer and has been able to
play with the same girls the last few seasons
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