I lay in bed at night a lot of the times thinking of things I'm going to post on here. I usually come up with really good thoughts, then when I actually come to the computer the next day my mind just goes blank. There's sometimes so much on my mind it's like where do I even begin? Is it even worth it to write it? And then I think, this is my story, this is for me to look back on...to remember these moments that I went through. good or bad. And I made it a goal for my self to write on here more often, so I'm going to do that.
Oh man, where do I even begin. The past few months have literally in a sense been madness. Right after Valentines day I had another bone marrow biopsy/aspirate to see where my marrow cellularity stood, but the main reason for it was because my platelets are still not producing like they should. We're coming up on 2 years since my transplant and they're still not in a safe range at all. So my Dr had discussed (with other Dr's around the country) about a new drug that could help start producing those platelets. Well that would be the hope. The drug comes in pill form and/or shot and she felt the shot would be more beneficial. We actually haven't gone along with this yet, because for some miraculous reason my platelet count has boosted slightly higher the past couple of appointments. (maybe we just needed to scare it with another shot, lol).
I'm still on Arenesp, which is a shot to help stimulate red cell growth because like my platelets...those aren't producing on their own either. I'm still doing ECP bi-weekly for my GVHD , and I continue to get IVIG treatments'. However they are switching the kind of med, because I keep having scary reactions every time. On a positive note, Because the Arenesp is working we have to get the extra iron out of my body. So to do that they will have to phlebotomize. So the first day at ECP they just won't return some of my blood back to me. So hopefully we'll start seeing those iron numbers start decreasing. Unfortunately, I didn't do so well with that this past time and my counts dropped significantly, so they're probably either going to have to hold the phlebotomy or only phlebotomize (or return) a fourth of my blood the next time.
I was hoping to stay out of the hospital, but when you have no immune system...well it's kinda hard. The whole cold and flu season has been really hard on my body. I got RSV, and let me just tell you the treatment for that...is AWFUL. You're stuck in a bubble doing a treatment for 3 hours every 8 hours around the clock. And everyone in the room has to wear a big mask. So I had about a week off, then I got really sick again and I had a fever, throwing up, extreme nausea, and an infection in my lung. I was pretty bummed because that next week was the kids spring break and we were supposed to go to San Diego with some friends of ours. I was in the hospital for that week, but my docs let me out right in time for the trip and felt I needed to go for my mental being. We went, but I didn't do so well. Lets just say I'm really thankful for Zofran, Ativan, Benadryl, and pain meds...lol. I was really sick every day we were in San Diego and didn't get to do much, but it was nice to see different scenery and smell the salty air and be with my family and best friends. I had one decent day and my sweet dad took me out to La Jolla to see the seals and we were literally right by them on the beach. It was so fun.
We were also able to take a trip to Philly to watch my sister in a volleyball tournament. I was nervous about going just because all that's been going on the past month, but we had been planning this trip for a while and I was excited about going. So I went, 18 hour fluids packed, wheelchair packed, meds packed, lots of masks packed and all and we made it happen. We all had a great time as a family, but we missed Zack! Stupid college! And we could of done without Jace getting super sick for that 48 hours. My parents basically quarantined me from him because I WAS NOT GETTNG SICK ON THIS TRIP! hahaha! Hattie killed it in her tournament and their team earned a bid to nationals. We were able to do lots of site seeing and we ate lots of Philly cheese steaks along the way! And of course I (attempted) to run the Rocky steps. It was pretty grandma like haha!
Oh ya, we also went to the Justin Bieber concert...and I might have gotten a little Bieber Fever. Don't worry, nothing that sent me to the hospital! Almost though...LOL!!!
Last week I had a really special day with my sweet friend Kaitlyn who has been battling neuroblastoma. I met her about a year ago in the hospital when she came knocking on my door wanting to play soccer and walk her baby dolls. She was the only one would get me out of my room. She's only about 3. A lot of my cancer friends are around that age. But you develop these bonds with these kids that are indescribable, that no one else could understand. Kaitlyn and I, we have a special bond. I'm so thankful her precious soul has come into my life. Her prognosis isn't great, so we were able to do something that she's been wanting to do for a long time, and that was ride horses. I have horses at my house so it worked out perfectly. We had a special day of being cowgirls, collecting eggs, playing, eating snow cones, and just having fun. This little girl has changed my life and I love her so much.
I apologize for the long post but I feel like so much has gone on and I haven't updated on here for a while.
This past month I also got the opportunity to be featured on Channel 15 for the Phoenix Children's Hospital Telethon. I was able to share my story in hopes that people will donate to PCH and I was able to share about my awesome Garth Brooks experience that PCH made possible. *If you're not already a blood or bone marrow donor, please consider signing up and saving someone's life like mine and also consider donating to PCH! :) Btw...if you want to see the news clip, below is the link from the Kin Can Kick it Facebook page!
This past month has been crazy. I've struggled both physically and emotionally, but I am thankful. Thankful to be here and thankful to be surrounded by such great people and great influences. To be honest it's hard to live through this every day. And it's hard because people don't understand. Just because my transplant is "over", doesn't mean it's "over". I'm still at the hospital 3-4 times a week, tons of appointments and tests, dealing with constant infections, feeling crummy all the time, tiredness and fatigue, ECP bi weekly, 18 hr fluids and Micafungin (IV drip), lots and lots of meds, and the list goes on. But I'm trying to live. Trying to enjoy life, enjoy friends, find "normalcy".... And I want people to understand that. I'm so grateful for everyone's support and love!