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.

Tomorrow:
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?