After a long hiatus....good news!

So..it's been forever since I've been able to write here....BUT!!

GOOD NEWS EVERYONE! (<--for the WoW players) /grin...Ella is doing VERY well!

Ella has undergone surgery to remove her tumor, central line insertion, apheresis, 8 rounds of chemotherapy, a bone marrow transplant (autologous, meaning she got her own stem cells back), 14 rounds of radiation, seemingly unending blood transfusions, countless shots of some form of GMCSF in her legs, 6 rounds of cisretinoic acid treatments, 3 horrible bouts of mucousitis and 5 rounds of a newly approved (study closed as of last year) antibody treatment at Seattle Children's Hospital. She has endured 4 rounds of "scans" which include bone marrow aspirations, full body ct and bone scans, hearing tests, echo/ekg's, etc. There were two times during the course of these treatments that I thought we were going to lose her. Needless to say, this has taken it's toll...we ended up spending 23 of the 52 weeks from her diagnosis date thru January 12th, 2010 living at the hospital with her. Then we spent another 3 weeks living there between January and April. Not to mention, we were at the hospital, even during our "out" weeks at least twice a week..usually 2-3 times for clinic appointments/dressing changes, etc etc. It became our home in many ways.

She never had to have an NG tube inserted (feeding tube inserted thru the nose) as 90% of children with high-risk neuroblastoma end up having. It makes feedings and medication delivery much easier but it also causes the gastrointestinal system to become very lax. Ella did NOT want that tube so we talked with her medical team about what we needed to do to make that happen. What it meant was alot of vomited medicines and food til we got the right mix. Then redoing it when her body decided it didn't like that type of yogurt/pudding/insert name of medium one can hide ground up pills in here. But we persevered. We were told that if Ella dropped below 19 kilos(dont' ask me why they do that in metric terms...we all complained bitterly!..it's about 40 pounds), a tube would have to be inserted. She came close last fall following her release from her transplant stay but she never dropped to 19. She was determined..and so were we! We were blessed in that Ella only had two stays between "scheduled" hospital stays that were due to illness(many families told us that they ended up only being home 5-10 days a month while getting monthly chemo sessions). Once she got a cold (brutal, mucousitis galore and terrible fevers, 9 days in that time) and the other time she just couldn't kick her mucousitis from her chemo by herself so we needed to go back in and give her some support.

We were actually blessed in so many ways. I'm sure those of you that are parents of kids with cancer who are reading this are thinking what the hell is this woman talking about, I would have thought the same thing had I read something like this when I was in the middle of it...but we were. Given the circumstances, things could have been even worse, as unbelievable as that may sound. I was already staying home with Ella so I was able to continue to be available for her any time; we already lived close to Seattle Children's (we knew families evac'd in from Alaska who had to move here for months during their children's treatment), we had great insurance thru El's father's company and we have no other children but Ella. Many families were enduring what we did without these blessings.

El's Hickman line (the line inserted in her chest in January of 2009, aka her "tubies") was removed in early April of this year (this is a big deal!) and she has been enjoying full on baths, showers and swimming again for the past month and a half! :) She is back at her old Montessori school 2 days a week in the afternoons(yay Small World!) and is taking Tae Kwon do classes 2 afternoons a week for a half hour each day! She enjoyed a fun 10 day trip with her dad and his family at the end of April and will be heading out to the east coast with me in the middle of July for 3 weeks of vacationing around the northeast. ALL of you that are reading this are part of this success story. Take heed however, we are not out of the woods yet. Now comes the waiting. Ella is due for another round of "scans" during the week of July 6th. We will, as a collective whole, be holding our breath again til we see those results. Our oncologist tells us that when (yes I said when) Ella is free of "recurrence" for 3 years following her transplant (done in July 2009), her chances of recurring will drop to somewhere around 1-3%. So that's our next milestone! The sad truth is that if she does recur, there is nothing that can be done since she has literally had every treatment available for neuroblastoma in the world of medicine right now thrown at her already. So keeps those cards, letters, love, good wishes, etc coming! I will be sick to my stomach the entire week of her scans like I always am so if you're on Bronzebeard with me or part of my daily circle of family/friends, please pardon my grouchiness in advance! ;).

A special treat has come our way for Ella's wish from the Make a Wish Foundation. Ella has been given a cooking class from a local chain of natural food markets, PCC markets to be exact, which was held two Fridays ago. Two local newspapers covered it and you can see the story about it if you google "ella sultan cook". Use those keywords and you should find a link to the story run in the Herald and the Enterprise in the past week :). ALSO, Ella got to be a "real" chef on a local cooking show also sponsored by PCC markets! It's called "Gardening with Ciscoe" and if you google that name, you will be able to see Ella's segment on their website. It aired in Seattle this past Saturday. We are in the process of working with MAWF to grant Ella's "big wish" to meet a Food Network chef and be at a taping of their show...more to come on that :)

I would like to say thank you to 8 very special people in my life that were with me thru this in varied and very important ways. Ed Mergele (also known as Cam to the SK'ers on BB and my personal Rock of Gibraltar and Captain Jack Sparrow all rolled into one!), Joan Holland Meehan (MOM!), Chip Cleeve and Matt Michel-Cleeve (brothers!!!), Christina Greene (soul sister) , Jeanne Christiansen (soul mother!), Micky aka Skeltonjack (I'm not using his last name cuz I didnt' ask him first!:P) and Mikael aka Shunahe (same last name business). You all know what you did...and I love you all for it. I am not the type to seek out groups and support from outside places...when crisis hits, I bring those closest to me closer and close out the rest of the world. The folks named above were MY angels and my contact with the world outside cancer world. My feeling from this experience is that you do whatever you need to as a parent to get your child through this and get yourself through it to help get your child through it. You are plunged into an alternate reality that, in my deepest soul, can only be likened to being in a guerilla warfare campaign on the frontlines in a jungle. You are battered and beaten, stretched beyond what anyone would tell you the limits of human existence can endure...and yet you carry on. Fighting an unseen enemy every day. All decisions become black and white; an individual is either on my team or they are the enemy, there is no more gray. I judge no parent in their reaction to this news...no matter what that reaction might be. Each person must follow their own path. I chose mine..and I'm honored that those that came to my side chose to do so.

The groups of folks I would like to thank are as follows: the staff of the hem/onc clinic, the homecare division and the PT department at Children's Hospital of Seattle, the parents/teachers and administrators of Small World Montessori in Everett, Aileen Aylward Hammar and her crew at the "hospital school", the ladies that made me good coffee at Tully's in the hospital lobby!, the guys on the valet service at Children's (they rock!), everyone in the Rochester, NY area that knows my mom and has been praying/sending good vibes to Ella and our family, everyone in the Albany, NY area that has been doing the same and knows my dad and step-mom, all my friends from Cornell and back from my high school days that have come out of their own crazy lives to support me, Ed's family in Texas(esp his Mom!) and thank you so much to all the folks that were part of Skeletonjack's crew who cared enough to help Ella and our family during the REALLY hard times! And a special thanks to all of my friends on World of Warcraft's server named Bronzebeard...you have all done angel work, always remember that.

If anyone has questions, feel free to post on this site..I think you can post good wishes...not sure. tho. If not, my email is cherglow@hotmail.com, feel free to send whatever you'd like my way and I'll do my best to respond. Transition out of the abyss of cancer world is scary and very difficult. Ella has a cold at the moment and it's, of course, got me scared out of my wits. But life, apparently, does go on....

If there is one thing I've learned, it's that families with children diagnosed with cancer are in a very unique place in the universe. They need to be treated with alot of patience, care and love and do NOT need anyone else's issues dumped in their laps. Trust me, they have enough to contend with..more than any of you that haven't lived it would ever be able to bear. Do everything you can to support them quietly, gracefully and patiently...with an extra dose of love in your heart...they need it..don't stress them out, dont make them think, don't make them make decisions about anything but their child's well being, dont' keep them awake when they have those precious moments to sleep....use my wartime analogy, put yourself in that place and make them some extra food next time your cooking a big pot of pasta...those things mean the world to us. My team was amazing about things like this...I wish the same for all parents in my position.

My last words today are the most important to me. My biggest, most heartfelt and deepest thanks and love to out to my daughter Ella. You amaze me, you floor me, you move me to take action when I think I have nothing left to act with. My lovely angel girl, you have inspired me beyond all imaginings of inspiration and my heart will hold you forever gently sweetheart :)

Peace and love, calm and growth to you all....do this for Ella, love each other..it's all there really is afterall.

Coleen