Our Sweet Angel

Our Sweet Angel

Sunday, July 10, 2011

Consolidation lasts for 28 days

From the book Childhood Leukemia by Nancy Keen which is our daily go-to book...

Consolidation.  Even though more than 95 percent of children with ALL achieve remission during induction, without further therapy most of them would quickly relapse.  The goal of consolidation therapy is to continue killing the remaining leukemic cells and stop new diseased cells from forming.  This process is trickier than it sounds because cancer cells, which by definition are very unstable, tend to mutate frequently and can become resistant to the drugs that initially kill them.  As a result, consolidation therapy consists of new combinations of drugs designed to destroy the cancer cells that survived induction and to stop the development of new cancer cells.

Carmen and I flew to Oahu on Tuesday morning.  Getting her up at 4:30am was surprisingly easier than I thought it would be.  She was happy to have a "mommy-daughter" day with me as I have coined our trips for treatment off island.  The difficult part of the trip was not letting her eat anything until her sedation and lumbar puncture were over after noon!  When she can't eat or drink, neither do I.  So you get a really hungry mama and a suffering little girl.

Carmen is getting used to triage at the PAU clinic and got up on the scale, got her height measured and let nurse Sharon take her vitals with a smile.  She is beginning to feel more comfortable there and is enjoying being able to read books or watch a movie all the while having ALONE time with just the two of us.  The part she is not getting used to is having the port (surgically implanted in her chest last week) accessed by needle.  They do numb the site 1-2 hours prior to putting the needle in and taping it there for the visit.  I can't blame her.  I try not to let her see, but she is curious and wants to see what the heck they are attaching to her body.

She is also not very keen on going down to the "sedation room" which is quite sterile and getting all hooked up to everything then going to sleep.  I had her sitting facing me on my lap while a the sedation nurse and doctor were preparing her.  She was crying and I was telling her to try to picture her, Trevor, Neva, Raeva and her friend Javin running down the beach at Anini with Roxy running circles around them.  Trying to create an image of fun, happiness and peace while we were in this stark room.  While my body was trembling and her body was shaking with fear and I am crying but not letting her see, I just keep whispering in her ear.  I feel strong sometimes but not at all when my baby is going to be sedated and have needles in her body.  While I am whispering in her ear, I picture Chris holding me and whispering in my ear that everything is going to be all right and that we will see our baby girl grow to become an amazing woman and that we will watch our happy, lucky girl go to school, get married and have a family someday and that we will be around to see her when her hair turns gray. 

Carmen will be having these sedation and lumbar punctures for the next two trips to Oahu.  I hope they become easier.  I just don't know how parents do this!  I REALLY, REALLY commend all parents of children fighting cancer and all other types of diseases.  There are so many of us and it's not a group anyone ever wants to be a part of but now that we are we hope to become strong enough in the near future to help and support parents through these heartbreaking and difficult times.  It is getting easier though I know we have some more intense phases ahead of us.

On Carmen's Tuesday appointment we received her protocol treatment schedule for the next 7 months.  I am still reading over everything but there looks to be a part in about three months called "delayed intensification" which will last 56 days and be about as intense as her first month of induction therapy.  It looks like we will need to have some stays on Oahu then as there will be visits every few days to the PAU and maybe some in-patient visits.  Then after the 7 months are over, she will have a bit less than two years of maintenance therapy to undergo.  Then she should be pau!!

We are praying for strength to get Carmen and our family through these therapies and get her 100% well!

We are so overjoyed!  Carmen is really getting back to her old self!  She is happily playing with all of her new and wonderful toys and books sent by YOU!  She is constantly wearing this beautiful princess dress she received as a gift, and is really enjoying having her best friend and playmate in Trevor.  Her ANC has been a really good number so she has been able to have some visitors and play dates.  She is walking really well now and gaining strength in her legs and body.  As she gets back to her old self, she is forever a changed little girl.  Chris and I feel she has had to grow up so much in the past 6 weeks and that she is different and knowing.  She is very joyful and I think it because she is so happy to be out of the HOSPITAL and to have her body back!

Much love to you and your family and thank you so much for your support and for reading about Carmen.

Team White

A wonderful sign from Ceecee

May 14, Hanalei Bay

Taken May 14, 2011 as we watched an epic sunset at Hanalei Bay

Trevor's 3rd Birthday Celebration!!

YEAH!!  Everyone is smiling!!