Amelia's radiation contraption

Day -7 & -6

Day -7

For those new to this BMT journey that is how we will count the days till day 0 which is transplant day and from then on it will be + days.
We arrived at the hospital at 6:30 on Friday morning got admitted to the hospital and got her new room, which is huge and has 3 TV's in it and one is like a 52" TV. Should have pictures below. (Turnsout they are above) Then at about 8:30 she went down for her total body radiation. Which took a little while because of all the measuring that they needed to do. You should be able to see the contraption below that she had to stand in for about 10 minutes on each side and had to be real still for it. So far she has done really good, some times the radiation can make you really sick and nauseated. She has done well, still eating really good her new favorite is tater tots! She can order from the menu any time she wants between 6:30am and 7pm. She had a red cell transfusion last night and started to have an allergic reaction, so from now on she will get pre meds before she gets any blood products. I am sure now that she will be sleeping a lot more with the Tylenol and Benadryl. Other than that she is still her spunky little self.

Day -6
Today is Saturday and there isn't anything up on the agenda today but hang out and maybe get some platelets and premeds so I am sure lots of sleeping for her. Tomorrow, Sunday, she will start her Chemo and all those nasty meds and then we sit and wait for the side affects. Which I keep praying she doesn't get that badly. One of the chemos she will have to be force to tinkle a lot to flush the meds out of her kidneys and bladder.
I will try to keep you as posted as I can!
Blessings,

Spunky Monkey!!

She is one tough cookie with more spunk than any one I have ever met. Yesterday she made me take her to get her hair shaved off. She begged me and I said what ever, I'm not going to argue she is the one who has to go through all of this so, we walked about 5 or 6 blocks ( I did any way she was in the stroller) got her head shaved and it was done. See the picture below, I took too a place called Stadium Hair cuts and after it was all over with the lady said "it's on the house! I can't charge you for this!" She did it with a smile on her face, she is brave! She loves the no hair thing especially this morning when it came time to get up and get dressed, cause that meant no hair to comb!
Any way tomorrow she has one morning doctor visit and then I have a few in the afternoon that she doesn't need to go to. Then on Thursday she has her GFR test the test for her kidney. Then we are finished till Friday at 6:30 she will be admitted and then she will have radiation at 8 am.
Well gotta run will update more!
Blessings

She talked me into shaving her head....:/

First week of work up

OK sorry I have been MIA...we have been non stop with clinic visits, we started out early on Wednesday morning and usually got most of the day. Wednesday was a hectic day she needed some lab work and testing done that involved A LOT of blood from her. I warned them up front that she is extremely hard to get blood from. Well they stuck her once nothing, they stuck her twice and still nothing....third time they stuck her in the foot...still nothing. She said that's it 3 strikes and you are out not more pokes....unfortunately the sticks or rather blood is a must, so down to pediatric vascular access we went. Guess what there was still two sticks there...ugghhh I wanted to scream and she did scream. They finally got it in and got the blood drawn, we thought she wouldn't need the line till Friday and so they pulled it out. Long story short we got a phone call from the BMT nurse and said that she would need a red cell transfusion her hemoglobin was way too low and they wouldn't touch her for a bone marrow biopsy unless the counts were up, so that meant that she would indeed be stuck a 6th time. So our first visit on Thursday was for radiation simulation to get measurements for the actual day of radiation. That was a difficult thing for me because they gave her some xray's in the position that she will be in for the actual radiation day...So I had to leave her in the room by herself and walk back down the long hall to see her on the monitor....SHE LOOKED PETRIFIED....that was hard, you know I have this sign at home that says "There is a many a tears in the heart that never reaches the eye"...was that so true that day... so after that we had to head back to pediatric vascular access to get STUCK again...so this time the lady said she would put one in that she could keep in over night so that she could get her platelets in. Thank you! So the rest of the day went fine she got her first red cell transfusion ever and everything went fine. We went back to the RMH to see Mamaw and papaw and Marshall. Then Friday we got up early to be at the hospital for 9 in the morning so she could get her platelets and her bone marrow biopsy and her central line placed. Well that took all day due to scheduling problems she didn't go back till almost 2:00 and was finished with everything and headed to the RMH by 4:00. At 5:00 the site where the central line was place was still bleeding, so I had to call the BMT doctor on in the transplant ward and he told me what to do to get it to stop and the most important thing was to keep her still for a while so that the clot around the hole could get hard enough to stop the blood from dripping.......yeah easier said than done....but right now she is up in the room laying down with her BFF papaw watching Ramona and Bezaus...

So that is the jest of our week so far, next week is pretty much the same. Until next Friday and she will be admitted to the hospital that morning and have her radiation later in the morning.
I will try to update you as much as I can this week, I think it will be easier once we get admitted because there won't be as much running around and these two weeks. SO for now we have a free weekend to say good bye to dad and Marshall as they head back home.
Have a great weekend!
Blessings,


PS Amelia said to tell Santa and Mrs Claus (AKA Mr.Brian and Mrs.Susan) She loves you and misses you!!!

We arrived in Minneapolis on Sunday afternoon. We had to settle in into a hotel for the time being. Unfortunately there are no rooms available at the Ronald McDonald house. Then we got a little bit more unwanted news today, first we thought we were to start the work up on Tuesday and that got pushed back to Wednesday, then when we went down to pay another night at the hotel they said we could only stay here until Thursday night because they are booked up for the weekend due to the University's graduation, so now we are going to have to find another hotel for the weekend. I so wish things would go a little more smother with all of this, it just seems like we have had one thing after another for us to go completely wrong! She is holding up OK, I think she and I are just both ready to get this going! I will try to update in the next few days. Thanks for checking in on us! I pray that the rest of this journey goes much much smoother!
Blessings,

Bittersweet news!

Happy Cinco De Mayo!!
We got the phone call earlier today that we have been waiting two weeks for. The donor has been cleared and we are proceeding with all plans. I am pretty much packed and just about ready to leave Saturday morning. Amelia will start her work up week on May 10th with an admitt date of May 20th and then on the 21st she will start the process with full body radiation. Transplant date will be May 27th. It is such bitter sweet news, I am happy that there is no more waiting for donors and that this is all finally working out, but at the same time I know what we are facing and the mountain that we are about to climb. I think we are ready, well as ready as one can be for this journey! Now we pray for safe journey up there and for my husband and son as they drive back home, and that we can get into the Ronald McDonald House, I hope we can get in there. I just don't know if we can afford too many hotel nights! Well gotta run and get to more packing!!!
Blessings everyone!!