Tuesday, December 13, 2011

Stem Cell/Radiation Update

It's early!
We had enough stem cells!!!!! Whoooohoooo!!! After a very long day we got to go back to our Target House. It was a very long and bumpy ride back filled with lots of whimpers and cries. Once we got upstairs to the 5th floor and made the corner down the hallway to our room it was like heaven opening our door. You all know that feeling! We got inside and started getting settled in. After all, it was just about 9pm. Kayla was complaining of her bottom hurting. We weren't sure why until we changed her into her PJ's. Her right bottom-cheek was bright red and hot to the touch! Oh no :(  We took her temp, and looked and thought about if it could be an infection vs just an allergic reaction to something. So, (thank goodness for Donna... on her last night here) we called over to the medicine room to speak w/ the doctor. We confirmed that there is no temp, and all else looked ok. Of course Donna spoke with her on a medical level. The doctor agreed and said that she feels comfortable that Donna, an RN is here with us and we don't need to bring Kayla back in for an exam. Thank goodness! But, Denny is on his way there right now on a shuttle to go pick up some Benedryl. Hopefully that will do the trick! I will SO miss Donna when she leaves.  Thank you Deron for letting her come and be with us here and holding down the fort at your house so that is all possible! (they have 3 kids of their own at home).

Ok, so let's backtrack!  Stem Cell Harvest COMPLETE!!!! YAAAAAAAY!!!!!!!!

Today started early. We took the 6:30am shuttle over to the chili care center to be admitted for blood work. More blood work! Kayla was a trooper. She really was. We brought her over for sedation and all went well. Denny, Donna and I went over to the cafeteria for some breakfast and to just take a deep breath for all that was to come.
Before we knew it, Kayla was out of sedation and super grumpy and in pain. She does not wake up well. This was her 5th sedation. She was crying that her heart hurt (where her double lumen was placed). We were able to get her to stop crying once when we did a gurney race down the hallway against daddy. Kayla won. ;)
We walked over to the blood draw center into our private room with our favorite nurse there that we have met so far. She was just incredible. We loved her!!! She kept a close eye on Kayla and never let her out of her sight. Donna and I ran back to the target house mid-day to grab some peaches for Kayla (special request!) and the cafeteria was all out. While we were gone, Denny and the nurse got to know each other really well. When it was all over and Kayla was being wheeled out, she pulled me aside to tell me how special she thought Kayla and Denny are. She said that at one point in conversation, what Denny said to her gave her goose bumps. I just knew we would meet some special people here.
I don't usually post "these". This is being strong when strong is your ONLY option.
This is the machine that MAKES the magic! Stem Cell Transplant....... WOW!
After we knew that her harvest was complete, we moved over to the medicine room to wait and wait to see if they had mobilized enough cells. Obviously we know the outcome and all is good!
I know, Eeeew. BUT, this is going to help save our baby!
K<3    The "double lumen" We love you Kayla!!!!
Femoral line before it was removed
Now, at this point, Denny is back. The redness has lessened (thank goodness!) We gave her a half a dose of the prescribed Benedryl for safe measure.

Tomorrow will be Kayla's first day of Radiation. We thought it was going to be Thursday. They moved it up because the numbers were so good. That's fine. We will be ready. The only bummer is that it's at 12:45 and she has to be NPO (no food again 8 hrs before) again tomorrow. She understands that once she can hold totally still during radiation, she won't have to be sedated (and without food!) anymore. That is our goal! Radiation will last about 30 mins. They are allowing an extra 15 mins tomorrow to make sure that the double lumen is in the perfect location as well. (I'm sure it is).

Also, tomorrow, St Judes has their huge annual gift give away. I am hoping we can sneak over there during radiation to do some secret shopping! Supposedly the Target House has a basement where they can store Christmas gifts! I just don't know how we could possible sneak it onto a shuttle and not let her see it on our way back. I will try and find a way. This is the big give away event that people rave about over here. I honestly don't expect or want anything. Just being here is such a gift. I can't imagine anything better than just getting Kayla well. Spending the rest of our lives watching her grow and have a future is all any parent could ever want. As for Kayla, she wants some light up shoes. Thank goodness we have Zappos and an address. Done!

The princess is demanding to sleep on the couch tonight. She doesn't want to miss any action I guess. I am fine with that. My friends will laugh as they read this part. It is 10:45. Kayla is very tired but awake! This is really funny b/c at home, we are a strict, in bed at 7:30pm house hold and have always been that way. I keep reminding her that this is only the deal here at the TH and at home, things go back to normal!!! haha

Good night all!


  1. WONDERFUL news!!!!! More prayers answered! Stay strong Kayla! What a brave soul she is...you all are! God bless St. Jude's, your dear friend Donna, and your beautiful family! As always, you will be in our thoughts and prayers tomorrow for the first day of radiation. Lots of love from the Lyall Family!

  2. Thank you for your detailed posts! We look forward to reading them every night. Let us know how the secret shopping went! How awesome! When is anthony coming?
    Reading your blog reminds me so much of my old job, but St Jude's sounds absolutely amazing in terms of making the patients feel at home.
    You guys are in our thoughts! Love you! Tomaz, Diana and Isabella

  3. Hi Annie--I'm so glad you guys have adjusted so well to St. Judes. Every time I read these I am just so amazed by your little girl!! I have taken many patients to their radiation appointments and back over the years. It may seem overwhelming at first but Kayla will get used to it. Once they get everything lined up the way they need it, then the treatments should go smoothly. Hopefully Sedation won't be needed after a while. NPO sucks!! I'm glad the harvesting went well and that the femoral line could get removed. It's such a blessing that Donna has been there every step of the way.
    Don't worry you are doing a fantastic job of describing all this medical stuff ( Even if you misspell a word like Ativan :) You and Denny will be experts in medical jargon before too long. Miss you! Stay strong!--Matt

  4. Wow! Yaaay! What wonderful news to wake up to here In PA! Annie, your descriptions with the medical terms and Kayla details are super terrific, keeping us so informed and with you. Thank you, thank you Donna, who gets a "Friend of the Century" award from us all. Hope today goes smoothly as Kayla moves on to radiation. Love and gentle hugs, Auntie Ann and all

  5. Good Morning Everyone,

    So relieved that there were enough red stem cells to only do this procedure ONCE. I read the details and continue to become the proudest parent/grandparent on this Earth! As many others, I look for these updates daily (ok, I admit I look more often than once) to keep informed of the details......its a great way to feel "connected" while this is happening. I'm right there with you on this Journey, even though I'm not physically there. I'm always thinking, "I wonder how Kayla is doing now?" or "what are Denny/Annie doing now?" and I wait. Wait for the Blog. Once I read the update, I know that everything's going to be okay. It's not easy being strong through this with you, but I must. And I must say a big THANK YOU to Donna for being such a fabulous friend; you've taught our family so much about compassion and "being there" at just the right time. What an Angel you are Donna! That's why you're Kayla's Godparent. Annie/Denny sure know how to pick 'em!! :)

    Kayla will get well after all of this. And you will be able to watch her grow into the beautiful lady she was always meant to be. Thank God for you as parents for Kayla! We will all beat this together. TEAM KAYLA UNITED TO STAY STRONG!!!!

    I love you.


  6. SO relieved that the cell part is over for now! It's great they are starting early with radiation, because that is one day earlier that she can be outta there and on her way back home! TEAM KAYLA FOR LIFE!!! I can't wait to see what the basement has in store. I'm betting it's like The Elves Secret Special Stash!!! I hope you and Denny get something good, too! You are both so amazing and strong and determined through this whole thing. I read in awe every day of the trials you keep getting through miraculously! Love you all to pieces!

  7. Oh Annie, that is such wonderful news! I'm still in tears as I type this (you got me going at the Denny part and kept it steady through the end). You are such a great writer and are somehow able to have a chipper tone throughout your posts while illistrating a very clear picture of your experiences. This blog was the best idea! Kayla will be able to show this to her kids when they think their life is "rough". Stay strong Denherts!

  8. Wow Kayla sure is a trooper. That fem line looked painful. I have seen them in adults, but never in kids. I am so happy they got enough stem cells. That procedure is pretty amazing. And it does work for so many people. I am glad things seem to be going well, that you guys are so strong!! You have a lot of support!! Keep up the great work guys! Love , Krysta!!!

  9. Kayla, you continue to amaze us and we are so happy that the stem cell harvesting is over and also glad that Kayla got her peaches :) So impressed and so proud of all of you. That nurse truly got it, you all are special people. Donna has certainly been amazing and a huge help. Big hugs and love to all of you. Stay strong!!

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