Ugh!! I am so scared!
I am trying so hard to shift my focus from feeling scared and worried to focusing on more positive stuff, but it's hard. We've been down this stupid road so many times in the past four years. I can only hope that Ryan's blood count anomalies are due to his cough and maybe an infection. ...I have caught myself several times in the past 36 hours or so literally & physically waiting with bated breath and I have had to remind myself to relax and take longer & deeper breaths.
As for Ryan, by all outward appearances, he is doing great. No signs of illness other than the cough. He is full of energy. He tolerated the bilateral bone marrow biopsy this morning without a hitch. He asked me several times throughout the day why he has bandaids on his back. I told him that they did the procedure today to make sure he's not getting sick again, and I asked him a couple of times if he felt any pain in his back, but he said "no." I am glad. He hasn't had a bone marrow biopsy in a long time and Jason & I anticipated that he might have pain, but thankfully no signs of pain. He spent most of the day just being Ryan, running around and playing.
I, on the other hand, took a long nap when we got home. I feel kind of guilty about it. I was up last night until around 3 am, unable to sleep. We woke up at around 7 in the morning to leave to COH for Ry's procedure. I was tired when I got home, and since Jason was home from work today, I took advantage and snuck in the nap. I enjoyed the luxury of not worrying about the pending outcome of Ryan's test results for a few hours, but I felt a little selfish about it.
Tomorrow, Jason will be back at work and I'll be home with Ryan. He has home school and speech therapy in the morning & early afternoon. I want to be mindful of his apparent health and good spirits and have F U N with him tomorrow. Whether, its going for a walk, playing a few rounds of the new Pokemon Sorry game that he got today, or some other fun adventure. I don't want to dwell on my fear and miss out on b e a u t i f u l life with my super awesome baby weasel.
We are supposed to get the results back from his bilateral bone marrow biopsy and engraftment analysis by Thursday or Friday. Dr. P said she would call me with the results. I will post them as soon as I find out.
I hate the uncertainty and want to curse it, but I'm afraid to, because what if the news is even worse than the uncertainty? I'm hoping that the news will be a huge POSITIVE relief and that we'll be able to carry on with life as opposed to living in this suspended-like state of not really knowing whats going on and once again not being able to make any life plans beyond now and today. I feel like I can't focus on anything beyond today and beyond getting the results. I can't even focus on relatively simple things such as whether we'll be able to attend my high school's alumni spirit day this Saturday, a birthday party for one of Ryan's best friends on Sunday, or if I will even still be able to participate in the upcoming planned research trip with my university... These results have so many ramifications in our life and I wish I could just stop obsessing over them. I just want for us to be able to keep living life again, without all these intrusive, urgent worries. We were just starting to settle into a routine, but then crap/chaos found it necessary to interfere once again, making it our life seem like we live in a "Dirt Devil Upright" as our friends/fellow peds survivor parents described their own on life on FB this evening. How succinct! LOL! I have to laugh a bit about it, otherwise I'll cry. Sometimes its calm and other times we can't help getting sucked up in a whirlwind of yucky crap.
I saw a news story tonight on this amazing young girl who has lived her entire life with Cystic Fibrosis. She is only 14 years old and she is such an INSPIRATION to me!!! Her name is Claire, and here is a video of the news clip that I saw:
Survivor's Story: Flash Mobs For Claire: MyFoxLA.com
Some of the things that she said which struck me the most were: "What I fear more is living a life without finding purpose, losing track of life..." and "My goal is to just show other children how exciting this life is!!" I think what I admire most about her is her joy for life and her ability to not let her illness or worries about it impede or take over or stamp out that fundamental passion and appreciation. I want to be like Claire not just "when I grow up;" I want to be like her starting NOW.
...And so with her video and beautiful inspiration, I end this post. I need to go to bed and get adequate rest so that I can have fun with Ryan tomorrow and spend time with the girls, too, when they get home from school. Thank you as always for stopping by to check up on us, and for all the wonderfully supportive emails and comments from friends & family on Facebook... They are absolutely priceless reminders to keep chugging along. Sort of like in the past, when I used to go backpacking, and I'd sometimes find myself having to hike up a particularly difficult hill or set of switchbacks. I would have to force & remind myself to just keep putting one foot in front of the other and that eventually I would arrive at my destination. Thank you for sticking by our side and gently reminding us to keep taking those steps when the going gets rough. ♥
Comments