Been Awhile...again....

Hello all :) Coleen here :)

So I found a few minutes today. This will be short..more to come tho :). Ella is about to start her 4th round of chemo this Thursday. She was supposed to have started last Thursday but her numbers were not quite where they needed to be yet. No cause for alarm..they just delayed by a week to make sure her body was up to the next round. I'm going to summarize a bit here because I have to take Ella to the hospital for labs/clinic soon.

Good news...
-Ella is alive :)
-Ella has made it thru 3 of the 4 mixtures of chemo that she will be receiving and still doesn't have an NG tube (a tube inserted into her nose that remains there permanently for feeding/hydration/medication administration). We were told that she'd likely have one early on (after the first round).
-Ella is still VERY vivacious (when she recovers from her chemo sessions) and excited about her treatment being over and being able to "go to school, gymnastics, karate..anywhere I want!"
-We are halfway thru her six rounds of chemo prior to her bone marrow transplant.

Exciting news....
-While Ella was in patient initially, the hospital had a film crew come in for their most recent ad campaign and film for 2 days all over the hospital. They filmed Ella riding a tricycle while "connected" to her "pole". (her dad is off to the side running with her :)). If you google Seattle Children's Hospital tv ads you will find their most recent commercials which seem to be running constantly out here. Ella is in the 30 second and 15 second spots :).

Bad news...
-Chemo sucks....soooo much. Poor Ella was down to 18 kgs, which (for us Americans) is barely 40 pounds, after her last round of chemo. Cisplatin can die in a fire as far as I'm concerned. We had her on anti nausea meds every 1-2 hours round the clock from her first day of chemo (yes, even at night) and she was still having alot of breakthru nausea the whole time she was in for her chemo and for 5 days after we left the hospital (for those of you that are counting, that's round the clock meds for 10 days straight). We had to end up staying one extra day (torture) because her nausea was so bad.
-The time between Ella's second round finishing and her third round starting almost killed all of us. They had told us it would be brutal, and it was. She had to get a shot every day, EVERY DAY, of a substance that was boosting her white blood cell count in preparation for her apheresis (removal of stem cells from her blood to be used later to give back to her for her bone marrow xplant). She was still nauseous the whole time and had to be on regular doses of Zofran (we love Zofran by the way../hug Zofran). We took Ella to Children's every day ..she rode in the car the whole way knowing she was going to get "poked" and her face showed it...but she rarely cried..she just looked incredibly sad. Looking at her in the rear view mirror threatened to shatter my soul more times than I can tell you all.... She had labs and clinic visits every 3 days during that time and we were all watching her numbers carefully for the moment to harvest her stem cells to come. She ended up having to have 2 transfusions 2 days before her harvest, platelets and red cells. But her numbers, the day she DID get the harvest done, were higher than any the apheresis nurses had ever seen :). They needed to collect 5 million stem cells from her to have enough for her later bone marrow transplant but they don't keep little ones on that machine for more than 5 hours. So, of course, we worried. BUT, they ended up having her on there for 3.5 hours and called us 3 hours after she was done and said not only did she not have to have a second collection, but they had collected 116, yes one hundred sixteen, millions cells :) Those were separated into 4 bags and stored. One bag will be used for her transplant in about 3 months, the rest will be stored forever should she need them. Of course her dressing on her hickman line had to be changed every week still and yeah..it was absolutely exhausting....but, it's done. Once Ella's nausea subsided from that (two Saturdays ago) we really have just tried to rest and recuperate.

Ok so I will go into more detail soon :)

BUT, very important to say some thank yous...I will let Dave do his own special ones. I'd like to thank my brother Chip, my mom and my brother Matthew for getting here on the spot. And especially to Chip for dealing with all the horrible crap he's dealt with with his own health for the past year and for still making Ella and I his priority and being here when I(we) needed him more than he'll ever know.

I'd like to thank Small World Montessori and the families there for their undying support. Christina Greene, Noel Stockman and Miss Lissa are the special stars in this thank you. Christina, thank you for not going away...thank you for not letting me put you off by never answering the dam phone....thank you :). Special thank you to Ella's class, she loves you all sooo much. Thank you ALL so much for the love you've shown our baby. Mr. Brian, Ella goes to sleep most nights playing the CD of the songs you recorded for her. Music is her passion....thank you for sharing that with her :). I understand one of you also donated blood in Ella's name and that a blood drive at the school in honor of Ella is in the works. You are all my heros :)

I'd like to say a special thank you that some of you may not understand. I play an online video game called World of Warcraft. I'm in a sizeable "guild" in this game. Altho I have not met these people face to face, they have been there for me in so many ways as this insanity has unfolded and quietly shored me up and given me strength thru their ability to make me laugh and get me out of my own head for awhile each day :). Cindee (Tiny), thank you for cutting your hair and donating it to Locks for Love in honor of Ella (and never saying a word publicly about it, so I am, right now :P). Rage, thanks for getting angry that the world can do this to a little angel. Micky (Elo), thank you for being so amazing and doing something that is SOO what we need for Ella right now and coming up with it, running with it and handling it. You get it, thank you :) /hug. Imma, thank you for always, ALWAYS being there to let me talk to you without me having to worry about the "ulterior motives" /wink. /hug. Shald, thank you for my "chopper" and for being there thru so much of this for me. Shunahe...your spirit lifts me up..every time I see you...thank you..and NOICE singing voice there buddy ;). To the chix, you know who you are :). My girls have my back. Verah, Siryn, Shadow, Kaleri.../love to you all :). Thorge, Gal and Mite, thank you for having the sharpest of wits, caustic, hilarious jokes and for seeing the humor in the dark side. Special shouts to Wramphist and Darvenn for always coming back ;). And a big shout to Sleepless Knights...you've all been there for me in ways you'll probably never know. Thank you :).

Thank you to all the ladies at Other Mother's (my old job) and especially Shirley and Laurieanne....that book is helping me Shirl..thank you, and Ella loves her tutu :). Thank you to Roxanne Meehan and the members of her church for the amazing care package you sent Ella. Thank you to Steve, Dave's friend from work, who took our cats and whose family is giving them love while we focus on protecting Ella and helping her get well. Thank you to Dave's sister Val for coordinating dinners with her coworkers to be frozen and brought them to us for that first 32 day hospital stay (and for being El's loving auntie Val :)).

Last but MOST certainly not least AT all! Thank you to the doctor's, nurses and staff at Seattle Children's Hospital. You saved our baby's life....how do you thank people for something like that. /sigh. You're amazing folks and thank you for tolerating my headstrong manner so often, I'm a fighter, especially when it comes to those I love..and most of all, for my one and only baby. Thank you for caring for her :).

So many people to thank...and yet we're so caught in the maelstrom still.....please forgive me if I have neglected anyone. My brain is pretty well fried right now :)