Skylar is finally on the upswing. This round of chemo has been a rough one and very trying for her, yet she can still smile and giggle. Yesterday was better than the last, today is better than yesterday. She has high's and low's through out the day, but we are hoping to be able to go home with in the next few days just to let her play and be a kid. She is due back for her next round of chemo on the 30th- so it doesn't give us much time to enjoy outside of the hospital, but we will fill our days with love, family, and activities to help bring us all closer while we have time to share together before returning to the hospital. She misses her sister and brothers like crazy (so do I). One day at a time.
Again, we can't say how blessed we are to have each of you in our lives. All of the support goes beyond our imaginations. Financially, emotionally, and most importantly you all have continued to keep Skylar and our family in your prayers! We can not say thank you enough. You are all so special and thank you for continuing to follow us on our journey, on Skylar's journey.
Skylar's Mom- Jaime
Love to all of Skylars supporters. I tear up with every message. Please know that even the support of $1 can assist if we can get the message out to all of our friends and family members. It is difficult to understand the impact on all involved but with the prayers and support that is pouring in from everywhere, I know all will be good.
Our family is struggling right now but we know we are truly blessed...we have faith...and most importantly we have friends.
Thank you everyone,
Love Skylar's grandma
Today Skylar turns 7. Not at home with family and friends, but lying in a hospital bed. Even though she can't be home, Daddy, Sissy, Bubba, are all going to come up to wish her a very Happy Birthday. She is doing a little better today, although still feels pretty "icky". She tried to get up to get a manicure from the volunteers in the hospital, but ended up right back in bed and almost vomiting. Today may just have to be a slow day, but it will be a good day none the less. Thank you all for being here.
Saturday, May 4th, 2013
Meltdown in progress- They tell you to live a normal life. They don't tell you how to deal with the pain that can't be taken away by hugs and kisses, the way to deal with having to saran wrap your child just to take a shower to prevent a Broviac- a line directly to the heart- from getting infected, or how to deal with the blood curdling cries of a 6 year old child while taking that showre, or the fact that it brings tears to your eyes from the hurt you can't fix, only to be hugged by that child saying "it will be OK"... Skylar recouped much quicker than I, the resiliency of a child is beyond this world in every meaning. Ah- that reality of me waiting for it to "really sink in" has hit, ten fold. Sky had a wonderful day overall, and just got to be a kid. I can't tell you how grateful I am for that. But our "normal" has changed. Our bond different and much stronger. We are still adjusting to everything, and I know everything happens for a reason, and I KNOW WE WILL GET THROUGH THIS- but dammit, can I just catch my breath for a moment? - Jamie Noe
Skylar's labs all came back wonderful today. She was a champ at getting her Broviac dressing changed. She sat still as can be for her CT scan. While we were waiting for the labs to come back the CT results (initial reading, not the final read) came back and her tumor is responding to chemo very well- they way we could only hope! Next round begins Monday and she will have another lumbar puncture on Tuesday. Skylar is such a trooper through out all of this. ♥
Skylar is home. She has been adjusting to home life again. Staying positive and taking her medicine as she should. She is catching up on her sleep. She is eating like a champ. She is excited to sleep through the night and not have to wake up to go potty (a luxury many of us take for granted). For those of you donating please forward your address to mom at firstname.lastname@example.org
or dad at email@example.com
. We would like to send you an official "Thank you" card. This isn't much, and doesn't even come close to how grateful we truly are, but we would like to express our gratitude to all of you in the best way we are able to- even those of you who have chosen to be anonyomous. If you are not already following Skylar on her Facebook page, please add her- @Skylar Paige. She enjoys hearing your messages and this shows her that she is not alone in her battle. Uplifting messages, silly videos, comments- anything to keep her positive throughout this. Again, thank you all!
Tuesday, April 30th, 2013
As most of you know- Sky is home! YAY! We will be going back Friday for a CT scan and a readmission Monday for our 7 day stay and 4 days of chemo, one of the chemo drugs she will be receiving twice a day (every 12 hours). We came home to an awesome welcoming involving family! We are still trying to adjust to being home and getting things unpacked and washed and preparing bags for emergent runs or the next stay. Trying to get our ducks in a row. Skylar is still stuck at momma's side (which of course I love), we are probably going to head to bed before too long, been a looooooong- busy day! Hopefully we can get out of the house and see some people before we have to go back! Thank you all again for all the support =) sending love to you all ♥
Monday, April 29, 2013
Skylar just took her four syringes of medication- Allopurinol (helps to protect her kidneys and prevent build up of uric acid), prednisone (helps with the reduction of size of the tumor), oxycodone (pain), and Bactrim (antibiotic). Some of these taste absolutely horrible (I know, I tried a bit just to see what my baby has to take on a regular basis)... By taking these, just makes her even more of a champ in momma's eyes! She knows how important it is to take them, and she may not like taking them, yet she does it! just goes to show the strength of a child! Over all we had a melancholy kind of day. No real highs and no real lows. Just kind of hung out with mom and walked around a bit- ate quite a bit off and on through out the day. Tomorrow will be hustle and bustle learning new things and preparing to go home.