Monday, July 28, 2014

Kickin' It

Through being sick, I've seen people come together in ways i never knew they could and have seen compassion shown in many, many ways. It's an amazing thing. I never wanted to be "the sick" girl that needed people's help or needed the extra attention, but in reality I was, and am. But I think with trials like these, there are things to learn, and what I needed to learn and accept is people's help and support. Stepping back and realizing how many people care and support me in this journey is absolutely amazing. From the pink hair, the endless sweet texts and letters, to the iPad, meals, mini fridge (for my diet dp of course) and decorations for my hospital room…I have felt so supported and so loved. I know my family has too. Let me tell ya…it's a great feeling people. So, THANK YOU ALL!! 

To expand more on the iPad, mini fridge, book of notes, and decorations for me room…:
So, at the start of summer, I had gone to lunch with two of my friends, meg and madison c.  The impending transplant was brought up, and meg had asked if there would be anything I would maybe like to have for my long stay in the hospital. I jokingly said "oh an iPad, duh", but I was completely being sarcastic. I totally forgot I had said that. Little did I know,  meg had an idea! She decided to rally people from the community and my church and help (but I had NO IDEA).  Then, my mom received a sweet text from my Aunt Kara. She and my granny invited us to lunch last Thursday.  I had had a rough week…not feeling well and on another antibiotic…so I was a little hesitant to go (I don't like people seeing me "sick").  I pulled myself together because I knew it was an important day.  To my great surprise…kara drove to my granny's for this "lunch date".  I walked in and there were the cutest decorations, and some of my favorite people were standing in the room. It was like a surprise party, so fun!  Inside, I was overwhelmed with gratitude for these amazing people--meg, lisa, kara, granny, hattie, kate, maylee and mom. I am most comfortable at my granny's house, so this made not feeling well a little better.  Honestly, I couldn't believe what meg had organized…she gathered beautiful notes of encouragement from so many of you, a new iPad and awesome case, the fridge, comfy blankets and pillows, a perfect ipad bag, soft pj's and much more.  How lucky I am to be surrounded by such incredible people--THANK YOU! I know my response wasn't as exciting as they had all hoped for, but the reality is that when you don't feel good…it's hard.  I am grateful for the understanding of the people who love me.  This is something I will always treasure. 

While at granny's for lunch, we surprisingly got a call from transplant. I knew it either had to be great news…or not so great news. Well, it was great news. They said that transplant WILL be happening THIS thursday, yep you heard that right. I was not expecting to have another date that quickly. All of those prayers defiantly helped. I don't have all the details, but i will be admitted on thursday and have my line placed in my chest. This will not be an easy road, but I'm ready to "kick it"!! Stay tuned for more posts!! 

oh ps. We have a PINK door…thanks aunt Kasey! 


Sunday, July 20, 2014

7 days in a nutshell

Beach, beach, San Diego Zoo, beach, Sea World, ice cream, madi, best friends & family, beach….that was my week. And it was THE BEST WEEK EVER!!
We spent the week in San Diego with the Jobe family as a last get away before transplant. We had the BEST time with lots of laughs. It was so good to be able to get away and relax. I sort of forgot all of the crazy things going on back here in AZ! I'm so so grateful for the jobes and my family for making that trip possible…I love you guys more than you even know!! BEST TRIP EVER!!! Here's my week in pics: 

While on our trip, transplant called. That's not usually the greatest sign, especially in this case. We got some news that was pretty hard to hear and very very frustrating. Dr. Douglas told us that the donor she had chosen, you know the one in the military, may not be able to donate his marrow. They think because of his location(which I don't know where that is) he may be ineligible…and also because he got a tattoo in December it might be risky. People who just got tattoos have to usually wait about a year before they can donate blood or marrow. So where does this leave us? Well, I won't be admitted on the 28th anymore, now that they have to do more testing on the donor or find a new one. This pushes things back for I don't know how long. We're kind of back to the waiting game…and that is very disappointing and frustrating to me. Mentally, I was prepared for July 28th…I was ready to get this show on the road, but that's not how it's supposed to be i guess. The lord has a better plan, and hopefully they will be able to find another donor quickly (luckily I have other donors). I am hopeful, and although it's not what "I" wanted, it's all gonna work out how it's supposed to. I will make sure to keep all of you updated on this process…in the meantime please pray that my doctor will be able to get another healthy donor very soon.

Thanks everyone for all the love and support!!


Wednesday, July 9, 2014

Dates & Donors

BIG news everyone!! 
My family and I met with Dr. Douglas today for another transplant meeting. It went very good. We had previously thought that the donor was deployed to the military and that my doctor would have to find another donor, but we learned today that he was deployed but will still be my donor. So that is awesome news. 

We finally have a date for the actual bone marrow transplant!!! The wait is over. I get admitted July 28…that's the day my transplant journey will begin. I expected for it to start in July, but actually hearing a date makes it very real and very scary. But at the same time, it's so exciting and i'm so grateful. So many mixed emotions. The schedule is as followed:

Monday 7.28.14 (day -23) i get admitted and my broviac (central line) placed in my chest
this day is pretty special…my grandpa passed away on this exact date about 4 years ago, he was in the army and so is my donor. Not a coincidence. Right there you know someone is watching over us all. 
Tuesday 7.29.14 (day -22) i start Campath; medication to get rid of my T-cells
Wednesday 7.30.14 (day -21) Campath
Thursday 7.31.14 (day -20) Campath
Friday 8.01.14 (day -19) Campath 
Saturday and Sunday are rest days. She said I'll be on medication that makes me sleep for about the whole week, so i won't remember much lol. I then go home for 10 days, and the isolation will begin. No restaurants, movies, shopping, anywhere really for that week. I just have to be very careful and cannot get sick.

Monday 8.11.14 (day -9) re-admitted 
Tuesday 8.12.14 (day -8) i start a med called Fludarabine, which is a chemo
Wednesday 8.13.14 (day -7) Fludarabine (chemo)
Thursday 8.14.14 (day -6) Fludarabine (chemo)
Friday 8.15.14 (day -5) Fludarabine (chemo)
Saturday 8.16.14 (day -4) last day of Fludarabine (chemo) 
Sunday 8.17.14 (day -3) Melphalan (another chemo)
Monday 8.18.14 (day -2) REST 
Tuesday 8.19.14 (day -1) rest/ donor harvest; my donor will have a surgery to get the bone marrow
WEDNESDAY 8.20.14 TRANSPLANT DAY….or my new birthday as they call it!! (it's really not) but kinda like it because this new bone marrow will save my life and essentially give me "new life". It will give me the hope of being cured and one day living a normal life. I can say "see ya DBA and CVID"  I am SO beyond grateful. Just so you all know, this transplant day for me is not a surgery, it's actually just an infusion of the bone marrow into my central line, much like a blood transfusion. It will be a very calm day, but it will also be the biggest day in my life. 

She said I'll be in the hospital about 8 weeks, depending on how i'm doing. 
I'll be on all sorts of medication, the ones I mentioned are just the big ones. With chemo there's lots of side effects, because it's basically whipping out everything. It can cause nausea, vomiting, horrible mouth sores, fevers and other stuff that I won't mention because you probably wouldn't care too know…LOL!
I'll also start steroids later on to stimulate cell growth and I'll become puffy in my face and probably in my stomach…so i'll be bald and fat. Cute right?? Ya…not too excited about the steroids but I'm totally gonna embrace the baldness. (I will miss my pink hair though, i'm kind of obsessed)
It's a lot to take in. But like I've said before i have THE best support system and the greatest friends. Thank you everyone for all the love and prayers. I have felt them more than you even know.