Tuesday, January 3, 2012

Back to the routine

It's amazing to think that we were actually looking forward to getting back to the hospital. When you are here and don't really know anyone, you just long for things to do and people to interact with!  Kayla met a really sweet little girl who is going through treatment at craft night last night. Her name is Ella and she is also 7yrs old. She just had a bone marrow transplant. She was here with her grandma. Kayla is really missing her friends back home. Anyway, its been really quiet over the holidays. A lot of people live close enough to drive back home when there is a 3 day break. The parking lot at the Target House was just about empty all weekend long. It makes it seem kind of lonely and boring without the usual bustle of people coming and going. The sweet noise of families enjoying all of the cool rooms that the Target house has to offer. Now that the holidays are FINALLY over, we can enjoy the comfort of all of the faces that at one time seemed overwhelming, but have now become comforting.  We haven't really made any true friendships yet. I know that will come in time. For now, we all just sit in the waiting rooms together, pass each other in the hallways, or wave in the cafeteria.  There is a special comfort in knowing that everyone here knows what you are going through.  You find very few people who aren't willing to share in their journey. We all like comparing different approaches of what has helped as far as relief for different symptoms. There was an Amish family here recently (which was quite a site). They seemed to bring their entire family with them. They did keep to themselves. We were impressed that they would be ok with this modern medicine. Even the nurses said that they are starting to come around a little. It depends on which denomination they are in though. Some find it God's will and never treat the child while others have taken a more modern approach.
Before Kayla's bath last night. I had a feeling this would be the last picture of her with hair for a while
Kayla is doing really well today. Her spirits are high and she was in a good mood. Again, she had everyone cracking up. With each appointment, she needs to know exactly what is going on. Step by step. She asks 100 questions. She gags at the smell of the alcohol wipes. (yet she likes the smell of gasoline... go figure!)  Everyone just loves her. Her hair is continuing to fall out. Oddly enough the only areas where the hair seems to be not even thinning are where her probes were during surgery. It's like super hair. She is so tired of the hair getting everywhere though that I am finally convinced it's time to shave it. She is very excited and telling everyone she sees. "My mom is shaving my head today. I am SO glad." They all just nod their heads and smile. It's as if she is excited to finally be in the normal club around here. I never would have thought of it that way. It's as if now she feels like she fits in. So funny! Her scalp is pretty dry though. We meed with Dr. Pai and Gajjar today so I will ask what they recommend. They are very specific about what is allowed to be used and not.  We should be finished with our appointments by about 4:00 or so today.

 More Pics from Last night:

Daddy changing Kayla's bandages after her shower. She hates this part. She has a serious sensitivity to the tape (even though it's hypoallergenic) You can see how red she is. Then, we have to use alcohol and chloraprep to sterilize the area. It stings really bad.
Minutes later she is smiling and eating her Couscous.  

This Morning during her weekly blood draw
Kayla does NOT like the smell of alcohol wipes. She is flinching over just a smell here.
Kayla watching each and every step asking a thousand questions about what and why.
Happy to hitch a ride in Dad's arms all the way to the cafeteria from Radiation
The nurses think I should shave everything except for that little tiny tuft in the middle. Kayla says, "No way!"

After we had lunch, the three of us headed on over for OT (occupational therapy). Kayla loves this room because they make exercising her neck fun! Today Kayla got to paint a painting on the wall. The object was to have to look up while she painted and to look to the side to put the paint on her brush. She did great! Her mobility is SO much better!! Finally :)

After painting her picture (which was really hard to do with that thick brush they had), Kayla couldn't wait to read a few pages of her journal entries to Ashley. Ashley was so impressed with not only her handwriting, but also her story writing abilities. We think she is very talented.

Tonight, they are having a spaghetti dinner in Target House II. I'm not sure what we are doing. First things first, I have some hair to shave.


  1. Love, love, love. You knock us out and raise us up with your most amazing faith and strength. Kayla and her hair is so touching and inspiring. Her new hair will be so beautiful and embraced and highlighted by so many thoughts and prayers. God bless you. You guys are never alone. Tired, yes, but never out of thought and prayers. Love, Mary and Frank Hoburg

  2. A friend of mine, Tracy Walker, posted the link to your blog. I too have blog and find it so wonderful and releiving to make posts. I hope yours does the same for you. Your pics touched my heart and brought tears to my eyes. My 3 year old had her same 'I'm snow cute' jammies. Seeing her in them made me want to hug you all. Many prayers and well wishes to you. To see what's going on in another crazy life, check out my blog, it might make you laugh...I try to make it humerous. Thank you for sharing your life and I hope my comments bring you some peace. We're all mama's who love our kiddos and would do anything for them...it's clear that is exactly what you are doing for yours.

  3. Oh Annie,,, I think of you everyday..You are all so amazing and STRONG...I cant even imagine why this is happening to you, but know you are a true inspiration to us all... LOVE <3

  4. Thinking of all of you and praying for you. Tony goes to a Christian school and he has added Kayla to the prayer request. The whole sixth grade class prays for her. Be strong all of you. Hugs from Guam

  5. Hi Annie,

    We met at Good Shepherd, and coincidentally I work at Reed with Nicole. It's a small world.

    My cousin's daughter was treated at St. Jude for Neuroblastoma and had her transplant there. If you want me to connect with her let me know. Jennifer (mom) and Lily (9 years old) are back in Atlanta.

    We are praying for you...

  6. She is a WARRIOR! Love the smile and the new look! She looks so relieved and happy and I would have never thought the delicate precious "Rose" that I've watched grow up from infancy would ever be begging for a shaved head! Do you remember the first time at the lake when she changed ever couple of hours due to dirt LOL! Tell K, Matt said Kayla is the coolest girl he knows. Actually he always has had a picture of her on his pin up board and he took the text you sent me and compared my phone with the beloved photograph with his friend and they were both speechless of how COOL SHE WAS! God bless Mommy for having the strength to grant special wishes, I know how hard that must have been for you, I'm so PROUD of you all! Mwah Jayna!

  7. The O&#39;Leary FamilyJanuary 4, 2012 at 9:17 AM

    Oh wow, what a fighter,unbelievable, so proud of all of you. I could not imagine what you are going through but can see she is exactly where she needs to be right now. What wonderful parents, staff and support she has as well. I like that she is a lefty too! We are a family in Novato with twin boys who play soccer and send good thoughts and prayers to you everyday! Looks like they are getting there. Be strong and you will get through this. All our love! Barry, Sauncey, Micky & Paddy O'Leary

  8. Kayla you are beautiful in everyway ive ever seen. I hope when my daughters born that she is as strong, positive and wonderful as you are hun.