Thursday, December 8, 2011

An Answered Prayer

Today was a very long day. It started with us all oversleeping until 6:30 and almost missing our first appointment at 7:00. Note to self: turn the alarm UP!

We rushed Kayla out of bed, which if any of you know her, is NOT an easy task on any given day. It was a blur, but I remember that is when her complaints of neck pain started. One of us was undressing and dressing her. Donna was putting the numbing cream on her "prick sites" which needed 30 minutes to work. We knew this was going to be a long day. Kayla continued to scream, "OOOOOW OOOOOWWWWIIIIEEEE BACK OF NECK" in the hallway. In the elevator to the main lobby. On the fast walk into the Chili's Care Center. Into the Lobby there and through the entire time we waited for the blood draw. By the time we got into the draw room, her blood pressure was through the roof. There was no calming her down but we had no choice. We had to draw the blood. The first vein rolled and we couldn't get the blood to flow so we decided to take no chances and just go for the anacubicle vein. That worked. Kayla continued to scream (which prior to all of this was never ever an issue). Finally the blood draw was over and walked to the E Clinic for her clearance.
Denny doing breathing exercises with Kayla in the elevator

All was well.... except she was still crying out in pain. We then walked over to the MRI waiting area. I filled out consent forms while Kayla continued to yell and scream out in pain. When people would walk by asking if she was ok, I would say, "She needs Physical Therapy ASAP". We have been trying to work with her on our own, but she won't listen to us. She gets so agitated. Denny went off to talk to Patient Services Orientation (to learn the lay of the land here) while we stayed with Kayla.  Here we met another incredible family who shared her wisdom with us. One thing she said about her daughter's scar will stay with me forever. She said that Skyler's scar is across her abdomen. When anyone wants to know what it is, she tells her friends that it's proof that God exists. I just loved that. What an incredible feeling... She was only supposed to live 18 months and is now 4 years post-op. Proof of yet another miracle! I LOVE it!!!
A momentary calm in between all the storms
We have been through a LOT together my friend. I love you! (and thank you for taking all of the pictures you do!)
Finally it was time for us to go back to start the sedation for the MRI. Kayla was at this point BEGGING to "take a nap". That was hard for me. Listening to her plead with the anesthesiologist to be sedated was horrifying. It was so hard to think of the pain she must have been feeling. I gladly stood there with her and stroked her hair and forehead while she breathed that giggle juice in. Sleep was a very welcome thing. A few hours later and many prayers later, we got to go in and get her. All was done and we could get our girl. Would she be feeling better? I mean she had morphine... Nope. Still crying out. It went on for 8 hours straight! Now that I am on the calm side of all that noise, I can think clearly to even type about it, but we are all drained from listening to it all day.

We got some tylenol from the pharmacy today to rotate in with the flexerol. She seems to be doing pretty well on this combination. 3:00 was appointment time to meet with the man himself, Dr. Hajjar. He walked in and we all introduced ourselves. The room was warm. There was a big desk with multiples of these huge computer screens for viewing MRI's and other images. He was calm. Kind. Confident. What I love most about him is he cut to the chase and gave us the answers we were waiting on, but not expecting to hear until Friday! He had a chance to view her MRI and LP results. ALL WAS CLEAR!!!!!!! Thank you so much for all of your prayers! This was the first bit of good news we have had in this whole journey! He confirmed that there is NO Cancer cells in her spinal fluid!!! We asked him if this is a preliminary guess or if he is sure. He is sure! This is soooo incredible!!!!!! She will still have a very long journey ahead of her, but this makes our chances at a less aggressive treatment plan more possible. She will still need both Chemo and Radiation, but it won't mean radiation in a larger area. Fantastic news and a HUGE relief to us.

We have an appointment tomorrow at 7:00am again for a bone scan. We have more consults and more appointments. Much more paperwork. At 10:00, Kayla will be sedated again. They will make the mold for her face and place the permanent tattoos in the precise locations where the radiation will go. Radiation is set to start no later then next Thursday, but might be as early as Tuesday.  We should be getting an address soon where things can be sent here. I'm not sure if it will be after we move to the Ronald McDonald house or not. That is looking like we will change over to there next Tuesday.

Ok, off to bed early tonight so we don't miss the 5am alarm tomorrow! Good night everyone. Thanks for all the prayers!!!!

There is a whole wall with the entire alphabet. I should snap them all. They are really creative, funny & sad. Maybe tomorrow?


  1. I know I keep saying it, but WOW. What a journey this has already been in such a short time. Last Thursday (exactly one week ago) I was building a Gingerbread House with our Kayla. I was just telling my Mom today that I'm so very glad that you all moved so quickly for treatment for recovery from the diagnosis, and with absolute good reason! This only solidifies what I've been feeling about fighting the "C" word. Early detection and early treatment is key. I'm so very proud of you and Denny, Annie. You are so strong and resilient together. Kayla is one lucky young sweetheart to have your hands to hold during this journey, and now I know that God has you all in the palm of his Hand......I hope that Kayla is more agreeable in times to come, and hopefully will learn to trust everyone helping her to eventually get used to it all. She will, I just know it. I love you.

  2. No C-cells in her spinal fluid, what GREAT news!!!! We will keep the prayers and good thoughts coming for more news like that. St. Jude's looks and sounds like a wonderful place with incredible people, exactly what you need
    while you go through this "journey" of curing Kayla. We think of Kayla and the family everyday and look forward to the updates!
    Love and BIG hugs,
    Lisa, Dan, Brittani and Sophie

  3. Aw, BREATHE!!!! What an incredible statement of news! I love you Denny and Annie and this will put the surge of strength in you both again, to fill up what strength is already insurmountable thus far. I am so sorry to hear that Kayla is going through so much pain, but it was only inevitable that she would start to show it. She is a true warrior for getting through it each day as she has, through her smiles and playdates and visitors with minimal breakdowns. My heart and soul are with you guys; there's not a moment that passes that I don't concentrate on my prayers and thoughts to all of you. LOVE YOU BUNCHES!

  4. Oh my gosh Annie, I have tears streaming. Wonderful, awesome news that there are no c-cells in her spinal fluid. That is tremendous! You go Kayla! I am so sorry she is experiencing so much pain. Now I'm praying for the child who filled out "v" too....

  5. AMAZING...amazing news, amazing child, amazing parents, amazing hospital!! I am sure that hearing your child in that much pain was excruciating. On the positive side, MORE PRAYERS WERE ANSWERED today!! Stay strong Dehnerts!! Love and hugs across the miles! Ari

  6. That is fantastic news! And that hospital is absolutely gorgeous! What a wonderful thing for the kids to have such a lovely place. Stay strong. Much love, Lannette

  7. Outstanding news about the spinal fluid!!! So sorry to hear about how much pain poor Kayla is in right now.

  8. What fantastic news!! Seeing God's work, never seizes to amaze. He is with you on this jouney. Im sorry to hear Kayla was in so much pain today. Every day is a new day. Sending lots of love,
    Joey, Paige, Olivia and Ava Korich

  9. Annie and Denny, I am so relieved to hear the spinal fluids are clear. I'm so sorry Kayla is in such pain. Hang in there, I'm from the south and we know St. Jude's provide miracles.

  10. Such great news about the LP results! So sorry to hear about Kayla's pain. Hopefully tomarrow will bring a better day! Love you all, Tomaz, Diana and Isabella

  11. That is awesome that the spinal fluids are clear!! All the prayers for Kayla from so many people are working!! I hope her pain is better from now on. Poor girl. Betty Criesco

  12. I was reading your posts with such a heaviness in me. Worried and praying for the best outcomes. When I read no C-word a huge pressure just left my whole body. I am so overjoyed for all of you. I know right now is still hard for Kayla and you guys...but there is a light at the end of this tunnel. Hooray for the less aggressive treatment. I am continuing to pray for all of you. We love you guys!

  13. I am so delighted to hear the good news about no
    "C" cells in the fluid and that Kayla's doctor is'
    SURE! What a relief.
    Very sorry to hear about Kayla's pain; you all are
    finding what deep inner strength God is giving you
    to make it through, hour by hour. Blessings to you
    both, to Donna and to precious Kayla. Thank God for
    St.Jude's and for the wonderful people He has chosen to work there and be there for all the children and their families!
    Dianne (Donna's Mom)

  14. I'm so thrilled for this news. My students have been following Kayla's journey, and when I mentioned your post about no c cells-they burst out in applause. We are all rooting for Little Miss Kayla!

  15. YAY... awesome that all was clear! Things are getting better. Hang in there, stay strong. All will be back to normal again someday!!
    Love Krysta and Family

  16. Just got say I love Denny, he's too much, found time for breathing exercises and a witty riddle or two. Such great news, guys, I'm toasting you tonight! MWAH

  17. So glad to hear that! Phew!! Thank you again for keeping us all posted. Looks like you & Denny are keeping the spirits high, and that you are in an amazing place!! xoxoxo

  18. That last comment is from Jodi...xoxo

  19. OMG, what AMAZING news that there are no C- cells in the spinal fluid. There just couldn't be any better news! We know you still have a long journey ahead but this is a HUGE first step and we truly believe that things will continue to improve from this point forward. Hopefully Kayla will begin to feel better as well. I know it's hard for her to believe right now but this experience will truly make her a much stronger and very special individual in the future. Hang in there also Mom & Dad - there are so many people that love you so much and just keep that thought close to your hearts.

    Love Cindi & Robert J.