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
Monday, June 7, 2010
Tuesday, April 14, 2009
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 :)
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 :)
Thursday, February 19, 2009
Been awhile....
Hey all,
Coleen here this time. Ok, trying to catch everyone up from where we left off. I think I will summarize where we are now, what we know for sure and what we're told will come soon in the future.
Ella was given her first round of chemo from Sat., Jan 31-Wed, Feb. 4th. Ameding our earlier description of the cycles, Ella will be chemo'd for 5 days, the first of which starts the timer on a 21 day cycle til the start of the next chemotization (yes I made that up). During that 16 days between, she will, theoretically, be home. If she so much as gets a slight, lasting (full day or overnight) fever, she will be admitted. Many other health issues, almost ANY other health issues, can be cause for immediate readmission to the hospital as well. While she's home, she will be going back to the hospital 2x per week for "clinic" visits. Blood is taken at these visits and immediately tested for ANC levels to see where she stands. 0 means she has no ability to fight any infection/virus, 500 or so means she can have someone over to the house but no public (malls, grocery stores, school, library, museums, any where with more than one other person...) contact. Then the levels go up from there for when she can actually go to a store or a park and play freely. She will have a whopping 2 days, potentially, since we've gotten home, that her counts will be high enough to safely have visitors over /sigh.
Where we are now. Ella has been home since the Friday after her chemo finished (Feb 6th) and has not had to be readmitted. She's given us a few scares with mild fevers, mouth sores and a sore in her ear but so far so good. We are scheduled for a final pre-chemo clinic visit on Friday (Feb 20th) and the second round of chemo to start for El on Monday, Feb 23rd. We were warned, when we first took her home, to be prepared for her to "pop" a fever (the "in" term for onc patients :P) and we'd be right back in. Also, we were told she'd most likely be exhausted, possibly have no appetite etc and maybe need an NG tube again. She came home and was full of energy this whole time except for about the last 3 days (not today but the 3 previous days) when she was fighting something off we think. I think the biggest loop Dave and I were thrown for was when we went to her first clinic visit the Tuesday after we came home and her counts were at zero already. We'd have had no way of knowing from Ella! She's had a pretty voracious appetite, especially when we first got home. Her counts have stayed at 0 until this last visit we had on Tuesday, 2/17, when it went up to 88. Yes..only 88..a healthy persons is somewhere around 1000 I believe, if I'm recalling that correctly. So imagine...and still, she shines :).
What we know. Ella has high risk neuroblastoma. There is a 40% survival rate from this type of cancer even with the very best known treatment being given. And from what Dr. Park has said, it's the cancer that kills those that don't make it..not the chemo. We have had two very serious, very intense "heart to heart" conversations with Ella's care "team" to talk about why the recommendation is for our daughter to go through the same treatment as a child that showed up fully metacisized with tumors. Ella's bone marrow ended up showing clear, her isotope tracer (MIBG) was clear and her bone scan (scans the exterior of all the bones in her body) was clear. So to us, as lay people, she had a tumor, it was completely removed, two lymph nodes were removed, one of which was right on the tumor so that makes sense that it was affected and the other was far enough away to cause concern when the cancer cells were discovered in it. But it was removed, and no further evidence of disease has shown up anywhere in her body. We were not comfortable with the answers from the first meeting, mostly because, as I figured out later, our questions were not formulated properly. So our most recent meeting, on Friday of last week, was to get to the hardcore and it was just that. As hardcore as it gets. Dr. Park basically told us that Ella shows 5 different "markers" which lead them to the recommendation of blasting her with the hardest stuff they have. They are 1. The fact that she's 5 (most neuroblastoma's show up in 18 mo. to 2.5 year olds or younger and older children, according to Dr. Park's research of 8000 children worldwide over the last 20 years with neuroblastoma, older children's tumor cells do NOT revert to a benign state on their own, as they very often do in children under 3). 2. Her tumor bled, leaking blood with cancer in it into her abdominal cavity. 3. She has that N-MYC gene in abundance in her tumor cells (Dave discussed this in one of his earlier posts). 4. Cancer cells were found in the abdominal lymph node that was removed (Dave talked about this earlier as well) and 5. She had heightened, sustained LDH levels. The blood leaking into her abdomen and the heightened LDH levels were both things Dave and I JUST heard about at this meeting on Friday and we were pretty unhappy that no one had mentioned those things to us earlier. I'll let Dave talk about how apparently rare we are as parents in the way were handling/responding to this situation :).
At one point during the conversation, Dr. Park became clearly uncomfortable as we were being very smart and firm with our questions and our need to understand before we would be willing to allow the recommended treatment to continue on Ella. I was elated. She looked at me and said "Look, I would NEVER recommend that Ella be put through this if I thought there was any other way to treat her and still give her the best shot at the best outcome". That was what I needed to see, that discomfort. I needed to know my daughter was not a lab rat or someone's ticket to a fellowship at Oxford, or better yet, the key to some funding source opening up. Cynical you say? You better believe it :). I needed to know that she had gone through great angst and read and re-read Ella's information and her own research and that she had been up a few nights at least, fighting with herself internally before she came to this recommendation. Because, as she said, Ella (as seems to be the case with my whole damn family's health issues lately) keeps getting put in the rarer and rarer category as you look deeper into her case. And when I say rare, the numbers of cases she has from a pool of 8000 kids over the 20 years that are "similar" to Ella's is a whopping 3-5 kids...ever...yes, 3-5 other children. So she is not cookie cutter by ANY means. Ergo, everyone involved needs to understand this is EXTREMELY complex and decisions are being made based on the data that does exist on Neuroblastoma risk markers in general and alot of instinct. The art of medicine is being applied heavily here.
I will go into some other things about learning "flush lines" and administer meds and all that crap on a later post. Suffice it to say, you become real savvy, real fast about how to do many things medical that you sooooooo could have gone your whole life knowing nothing about :P.
What the future holds....Well the first answer is who knows. The second answer is that this will be an especially insane month for our family with what will be happening. El is scheduled for 5 days of chemo starting Monday, home on Saturday most likely and then will be back in possibly 7 -10 days later for her "stem cell collection". They will basically be hooking her up to a machine developed at the Fred Hutchinson Cancer Center that will pump her blood out of her body, put it thru this machine which will collect her stem cells from the blood and pump it right back in again. And if that sounds scary to you..I'm with you. In order to do this, we are told she "may" (which usually means will, we've found) need a femural line put in her leg as one of her current tubes in her Hickman line is probably not big enough to handle the volume of incoming/outgoing blood for this procedure. So, in essence, Ella would need to be put under for inserting the line, removing the line and on one other day this round, be put under again to do her next round of MIBG, CT scan/possibly bone marrow sampling. She will start receiving daily shots (no, no other way to do it) starting on Mar. 1st and going for 14 days. This shot will be to stimulate production of her stem cells and there is a special team that comes over from "the Hutch", El's own nurse even, to do this procedure, which is obviously inpatient. She will NOT be put under during the collection process were told but will instead, need to be very still for like 3-4 hours as I recall. This, will be, interesting....
So, our calculations, since the femeral line insertion would be an inpatient surgery which she'd need a day to recover from (inpatient) before they could start the collection (which may take 2 "collection" processes to complete over 2 days), are that Ella will spend possibly 7 days this month (10 is optimistic) out of the hospital. 21 days total - 6 days of chemo(5 plus one recovery day)-2 days of line insertion/removal-2 days of stem cell collection - 1-2 days of ct scan/MIBG/bone marrow sample leaves you with 10 days at the most. Basically, once she finishes her testing and stem cell collection, it will pretty much be time to start her next round of chemo. By the way, it's easy to type all of this but ALL of it is dependent on Ella's "counts" (markers in her blood tests). Certain things can't happen til certain markers are met so this is all nuts because we have to take it pretty much day by day to see when we will be doing what this month.
So..there we are..and there we will be. I will go into more of the day to day things going on and send out our thanks to the literally hundreds of people that are now making up Ella's group of angels in her life. I am too tired to go into all this now but I wanted people to have an update to where she is now. I will share this...
Today, Ella and I took a walk outside around our apartment complex which sits on a beautiful, small lake that is protected as a bird sanctuary. She ran across our huge lawns laughing in the sunshine and quacking at the ducks in the lake and running head on into this old grey goose and her mate that are ALWAYS in our back yard area and ALWAYS ornery! She found a small, bent, slim branch on the ground that curved ever so slightly and told me she wanted to go sit by the lake and "go fishing" (her version of this is dipping the end of the stick in the water repeatedly while complaining that there are no fish showing up ;). She delighted in the purple flowers that decorate the lawns in a few places around our complex, even finding a BEE! of all things, pollenating the flowers in the middle of February...go figure. She's magic ( or mackage, as she used to say til she was about 3 and a half ;).
I will leave you all with that thought..and one wish from me: hug your babies and your family. Love them like your life depends on it. You will be rich beyond your dreams with something no one can take from you if you do :). Thank you all for your good wishes, meditations, prayers, thoughts and of course, deeds done in caring for our angel with us. We love you all...
Col <3
Coleen here this time. Ok, trying to catch everyone up from where we left off. I think I will summarize where we are now, what we know for sure and what we're told will come soon in the future.
Ella was given her first round of chemo from Sat., Jan 31-Wed, Feb. 4th. Ameding our earlier description of the cycles, Ella will be chemo'd for 5 days, the first of which starts the timer on a 21 day cycle til the start of the next chemotization (yes I made that up). During that 16 days between, she will, theoretically, be home. If she so much as gets a slight, lasting (full day or overnight) fever, she will be admitted. Many other health issues, almost ANY other health issues, can be cause for immediate readmission to the hospital as well. While she's home, she will be going back to the hospital 2x per week for "clinic" visits. Blood is taken at these visits and immediately tested for ANC levels to see where she stands. 0 means she has no ability to fight any infection/virus, 500 or so means she can have someone over to the house but no public (malls, grocery stores, school, library, museums, any where with more than one other person...) contact. Then the levels go up from there for when she can actually go to a store or a park and play freely. She will have a whopping 2 days, potentially, since we've gotten home, that her counts will be high enough to safely have visitors over /sigh.
Where we are now. Ella has been home since the Friday after her chemo finished (Feb 6th) and has not had to be readmitted. She's given us a few scares with mild fevers, mouth sores and a sore in her ear but so far so good. We are scheduled for a final pre-chemo clinic visit on Friday (Feb 20th) and the second round of chemo to start for El on Monday, Feb 23rd. We were warned, when we first took her home, to be prepared for her to "pop" a fever (the "in" term for onc patients :P) and we'd be right back in. Also, we were told she'd most likely be exhausted, possibly have no appetite etc and maybe need an NG tube again. She came home and was full of energy this whole time except for about the last 3 days (not today but the 3 previous days) when she was fighting something off we think. I think the biggest loop Dave and I were thrown for was when we went to her first clinic visit the Tuesday after we came home and her counts were at zero already. We'd have had no way of knowing from Ella! She's had a pretty voracious appetite, especially when we first got home. Her counts have stayed at 0 until this last visit we had on Tuesday, 2/17, when it went up to 88. Yes..only 88..a healthy persons is somewhere around 1000 I believe, if I'm recalling that correctly. So imagine...and still, she shines :).
What we know. Ella has high risk neuroblastoma. There is a 40% survival rate from this type of cancer even with the very best known treatment being given. And from what Dr. Park has said, it's the cancer that kills those that don't make it..not the chemo. We have had two very serious, very intense "heart to heart" conversations with Ella's care "team" to talk about why the recommendation is for our daughter to go through the same treatment as a child that showed up fully metacisized with tumors. Ella's bone marrow ended up showing clear, her isotope tracer (MIBG) was clear and her bone scan (scans the exterior of all the bones in her body) was clear. So to us, as lay people, she had a tumor, it was completely removed, two lymph nodes were removed, one of which was right on the tumor so that makes sense that it was affected and the other was far enough away to cause concern when the cancer cells were discovered in it. But it was removed, and no further evidence of disease has shown up anywhere in her body. We were not comfortable with the answers from the first meeting, mostly because, as I figured out later, our questions were not formulated properly. So our most recent meeting, on Friday of last week, was to get to the hardcore and it was just that. As hardcore as it gets. Dr. Park basically told us that Ella shows 5 different "markers" which lead them to the recommendation of blasting her with the hardest stuff they have. They are 1. The fact that she's 5 (most neuroblastoma's show up in 18 mo. to 2.5 year olds or younger and older children, according to Dr. Park's research of 8000 children worldwide over the last 20 years with neuroblastoma, older children's tumor cells do NOT revert to a benign state on their own, as they very often do in children under 3). 2. Her tumor bled, leaking blood with cancer in it into her abdominal cavity. 3. She has that N-MYC gene in abundance in her tumor cells (Dave discussed this in one of his earlier posts). 4. Cancer cells were found in the abdominal lymph node that was removed (Dave talked about this earlier as well) and 5. She had heightened, sustained LDH levels. The blood leaking into her abdomen and the heightened LDH levels were both things Dave and I JUST heard about at this meeting on Friday and we were pretty unhappy that no one had mentioned those things to us earlier. I'll let Dave talk about how apparently rare we are as parents in the way were handling/responding to this situation :).
At one point during the conversation, Dr. Park became clearly uncomfortable as we were being very smart and firm with our questions and our need to understand before we would be willing to allow the recommended treatment to continue on Ella. I was elated. She looked at me and said "Look, I would NEVER recommend that Ella be put through this if I thought there was any other way to treat her and still give her the best shot at the best outcome". That was what I needed to see, that discomfort. I needed to know my daughter was not a lab rat or someone's ticket to a fellowship at Oxford, or better yet, the key to some funding source opening up. Cynical you say? You better believe it :). I needed to know that she had gone through great angst and read and re-read Ella's information and her own research and that she had been up a few nights at least, fighting with herself internally before she came to this recommendation. Because, as she said, Ella (as seems to be the case with my whole damn family's health issues lately) keeps getting put in the rarer and rarer category as you look deeper into her case. And when I say rare, the numbers of cases she has from a pool of 8000 kids over the 20 years that are "similar" to Ella's is a whopping 3-5 kids...ever...yes, 3-5 other children. So she is not cookie cutter by ANY means. Ergo, everyone involved needs to understand this is EXTREMELY complex and decisions are being made based on the data that does exist on Neuroblastoma risk markers in general and alot of instinct. The art of medicine is being applied heavily here.
I will go into some other things about learning "flush lines" and administer meds and all that crap on a later post. Suffice it to say, you become real savvy, real fast about how to do many things medical that you sooooooo could have gone your whole life knowing nothing about :P.
What the future holds....Well the first answer is who knows. The second answer is that this will be an especially insane month for our family with what will be happening. El is scheduled for 5 days of chemo starting Monday, home on Saturday most likely and then will be back in possibly 7 -10 days later for her "stem cell collection". They will basically be hooking her up to a machine developed at the Fred Hutchinson Cancer Center that will pump her blood out of her body, put it thru this machine which will collect her stem cells from the blood and pump it right back in again. And if that sounds scary to you..I'm with you. In order to do this, we are told she "may" (which usually means will, we've found) need a femural line put in her leg as one of her current tubes in her Hickman line is probably not big enough to handle the volume of incoming/outgoing blood for this procedure. So, in essence, Ella would need to be put under for inserting the line, removing the line and on one other day this round, be put under again to do her next round of MIBG, CT scan/possibly bone marrow sampling. She will start receiving daily shots (no, no other way to do it) starting on Mar. 1st and going for 14 days. This shot will be to stimulate production of her stem cells and there is a special team that comes over from "the Hutch", El's own nurse even, to do this procedure, which is obviously inpatient. She will NOT be put under during the collection process were told but will instead, need to be very still for like 3-4 hours as I recall. This, will be, interesting....
So, our calculations, since the femeral line insertion would be an inpatient surgery which she'd need a day to recover from (inpatient) before they could start the collection (which may take 2 "collection" processes to complete over 2 days), are that Ella will spend possibly 7 days this month (10 is optimistic) out of the hospital. 21 days total - 6 days of chemo(5 plus one recovery day)-2 days of line insertion/removal-2 days of stem cell collection - 1-2 days of ct scan/MIBG/bone marrow sample leaves you with 10 days at the most. Basically, once she finishes her testing and stem cell collection, it will pretty much be time to start her next round of chemo. By the way, it's easy to type all of this but ALL of it is dependent on Ella's "counts" (markers in her blood tests). Certain things can't happen til certain markers are met so this is all nuts because we have to take it pretty much day by day to see when we will be doing what this month.
So..there we are..and there we will be. I will go into more of the day to day things going on and send out our thanks to the literally hundreds of people that are now making up Ella's group of angels in her life. I am too tired to go into all this now but I wanted people to have an update to where she is now. I will share this...
Today, Ella and I took a walk outside around our apartment complex which sits on a beautiful, small lake that is protected as a bird sanctuary. She ran across our huge lawns laughing in the sunshine and quacking at the ducks in the lake and running head on into this old grey goose and her mate that are ALWAYS in our back yard area and ALWAYS ornery! She found a small, bent, slim branch on the ground that curved ever so slightly and told me she wanted to go sit by the lake and "go fishing" (her version of this is dipping the end of the stick in the water repeatedly while complaining that there are no fish showing up ;). She delighted in the purple flowers that decorate the lawns in a few places around our complex, even finding a BEE! of all things, pollenating the flowers in the middle of February...go figure. She's magic ( or mackage, as she used to say til she was about 3 and a half ;).
I will leave you all with that thought..and one wish from me: hug your babies and your family. Love them like your life depends on it. You will be rich beyond your dreams with something no one can take from you if you do :). Thank you all for your good wishes, meditations, prayers, thoughts and of course, deeds done in caring for our angel with us. We love you all...
Col <3
Wednesday, January 28, 2009
Cautious Hope
Today Ella had what is called an MIBG Scan. The way it works is they inject her with a radioactive form of iodine ("less radiation in her body than you would get on a cross-country flight" we are told, though) as a tracer, and then they give her a CAT scan to see where things are glowing, basically. The tracer is drawn to any areas where there is rapid cell growth (like cancer cells), and helps to show where else it might be in her body. It also gives some false positives as certain spots in the body naturally have rapid cell growth (the brain and heart, for example).
Anyway, she had that test today, and we got the results. First, a caveat: in 10-15% of cases, the cancer for whatever reason just doesn't bond with the tracer, and since the tumor is no longer in Ella's body for them to know for sure "we know there's cancer there and it is/isn't glowing, so we know whether or not it bonds", they can't be completely sure, but the scan was completely clear. There's nothing in Ella's body.
This won't change anything about the treatment regimen, as they want to be absolutely sure they kill any cancer cells that might be hiding somewhere, so we will still be doing the chemo, transplant and radiation, but it starts us from a much stronger place. A lot of kids that go through this have the cancer spread all throughout their bodies.
Some other stuff I forgot to mention about the treatment options earlier - Ella qualifies for a clinical trial - a test of alternative methods of treating the cancer, in hopes of finding better treatments for future patients. In some hospitals, the first phase of the clinical trial adds in another chemo medication. However, since Seattle Children's was part of a pilot program for this clinical trial, and they came to the conclusion that it worked better than the existing methods, the first phase actually is identical to their standard "BAT" (Best Available Treatment), so there is no change there. In the second phase, however, there is the option to have two bone marrow transplants (and the two intensive chemo treatments that go with it). We're still not sure whether or not we want to participate in the second phase and put Ella through all that, however we are participating in the first phase, since it is exactly the same treatment Ella would ordinarily be getting, and the data will help their research for kids in the future. The lead doctor on this particular study is actually Ella's oncologist, Dr. Julie Park, so that's pretty awesome. As a few people have said to us, fighting Neuroblastoma is her life's work. I think Ella's in good hands. We've also decided to let them take part of her tumor for research as well (a "biology study").
Anyway, she had that test today, and we got the results. First, a caveat: in 10-15% of cases, the cancer for whatever reason just doesn't bond with the tracer, and since the tumor is no longer in Ella's body for them to know for sure "we know there's cancer there and it is/isn't glowing, so we know whether or not it bonds", they can't be completely sure, but the scan was completely clear. There's nothing in Ella's body.
This won't change anything about the treatment regimen, as they want to be absolutely sure they kill any cancer cells that might be hiding somewhere, so we will still be doing the chemo, transplant and radiation, but it starts us from a much stronger place. A lot of kids that go through this have the cancer spread all throughout their bodies.
Some other stuff I forgot to mention about the treatment options earlier - Ella qualifies for a clinical trial - a test of alternative methods of treating the cancer, in hopes of finding better treatments for future patients. In some hospitals, the first phase of the clinical trial adds in another chemo medication. However, since Seattle Children's was part of a pilot program for this clinical trial, and they came to the conclusion that it worked better than the existing methods, the first phase actually is identical to their standard "BAT" (Best Available Treatment), so there is no change there. In the second phase, however, there is the option to have two bone marrow transplants (and the two intensive chemo treatments that go with it). We're still not sure whether or not we want to participate in the second phase and put Ella through all that, however we are participating in the first phase, since it is exactly the same treatment Ella would ordinarily be getting, and the data will help their research for kids in the future. The lead doctor on this particular study is actually Ella's oncologist, Dr. Julie Park, so that's pretty awesome. As a few people have said to us, fighting Neuroblastoma is her life's work. I think Ella's in good hands. We've also decided to let them take part of her tumor for research as well (a "biology study").
Hey everyone
Ella is fully recovered from surgery, and we just wanted to share how excited we are about that -- we are back in the SCCA department now, and she recovered amazingly well. Almost twice as fast as was expected of her. One indicator of her speedy recovery was that she was hungry right away, and the other was that she had almost no pain, aside from some wincing when she tried to sit up the first few days. She has been walking on her own for 4 or 5 days (the initial walking was at her own request, even). We don't want to hang our hats on it, but we see this as a good sign that her body is overall healthy enough to recover from extremely intensive surgery that fast.
Coleen wanted me to say:
We know that many of you have told us that you feel very helpless (as we do) and would like to figure out a way to do something for our family. Coleen came up with the idea of all different kinds of cool hats, since it's very cold still in Seattle, and we will most likely all be hairless as a family soon, hats or other head coverings would be very appreciated. The crazier and more colorful the better. Matching sets, stuff just for Ella, whatever works :)
Another quick side note:
Thanks everyone for the notes, comments, calls, e-mails, etc, sorry we haven't responded all that well, but I'm sure you understand.
Coleen wanted me to say:
We know that many of you have told us that you feel very helpless (as we do) and would like to figure out a way to do something for our family. Coleen came up with the idea of all different kinds of cool hats, since it's very cold still in Seattle, and we will most likely all be hairless as a family soon, hats or other head coverings would be very appreciated. The crazier and more colorful the better. Matching sets, stuff just for Ella, whatever works :)
Another quick side note:
Thanks everyone for the notes, comments, calls, e-mails, etc, sorry we haven't responded all that well, but I'm sure you understand.
Treatment
Okay, here's the deal with the treatment:
This Friday, Ella will begin chemotherapy treatments. She will go through a course of chemotherapy that is 5 days of chemo, then 3 weeks off, 5 days of chemo, then 3 weeks off, etc. This will go for 6 "cycles". During the 3 weeks off, she will come into the hospital for "clinic" visits, 2 days a week. At some point during the chemotherapy, they will remove blood stem cells from her system and freeze them. After the initial chemotherapy phase, there will be a very intensive chemotherapy treatment. So intensive, in fact, that it will kill the bone marrow in her system (thus the stem cells). Following that treatment, she will have a bone marrow transplant, putting the frozen stem cells back into her system to regrow bone marrow and blood cells. After that, we see where everything stands, if everything is good, she will go into a maintenance phase.
During this time, her system will be very susceptible to infections and such. So much so, that if Coleen or I (and obviously anyone else) get sick at all, we won't be able to be around her.
Obviously the treatments have various side effects, some of which are nausea/vomiting, hair loss (Coleen and I (and a few family members) have already decided that if it's okay with Ella, we will be shaving our heads as well), high frequency hearing loss, and infertility. There are some other, less common side effects, but those are the "most likely".
This Friday, Ella will begin chemotherapy treatments. She will go through a course of chemotherapy that is 5 days of chemo, then 3 weeks off, 5 days of chemo, then 3 weeks off, etc. This will go for 6 "cycles". During the 3 weeks off, she will come into the hospital for "clinic" visits, 2 days a week. At some point during the chemotherapy, they will remove blood stem cells from her system and freeze them. After the initial chemotherapy phase, there will be a very intensive chemotherapy treatment. So intensive, in fact, that it will kill the bone marrow in her system (thus the stem cells). Following that treatment, she will have a bone marrow transplant, putting the frozen stem cells back into her system to regrow bone marrow and blood cells. After that, we see where everything stands, if everything is good, she will go into a maintenance phase.
During this time, her system will be very susceptible to infections and such. So much so, that if Coleen or I (and obviously anyone else) get sick at all, we won't be able to be around her.
Obviously the treatments have various side effects, some of which are nausea/vomiting, hair loss (Coleen and I (and a few family members) have already decided that if it's okay with Ella, we will be shaving our heads as well), high frequency hearing loss, and infertility. There are some other, less common side effects, but those are the "most likely".
Monday, January 26, 2009
"My special list"
Unlike most people that have an abdominal surgery, Ella has been absolutely starving since, like, the day after her surgery. We sat down with her the other day and had her dictate to us (with me taking studious notes) exactly what she wanted to eat when she was allowed. Here is her list:
1. Cookies, chocolate chip
2. Apples
3. Donuts
4. Red Gumdrops
5. Raisins
McDonalds Chicken Nuggets, sweety sauce, french fries
Chocolate swirl ice cream cone
Pancakes for breakfast
Cupcakes (pink) with pink icing
Cheese and crackers
Tuna and crackers
Carrots
Onion bagel with cream cheese
Peanut butter and jelly
1. Cookies, chocolate chip
2. Apples
3. Donuts
4. Red Gumdrops
5. Raisins
McDonalds Chicken Nuggets, sweety sauce, french fries
Chocolate swirl ice cream cone
Pancakes for breakfast
Cupcakes (pink) with pink icing
Cheese and crackers
Tuna and crackers
Carrots
Onion bagel with cream cheese
Peanut butter and jelly
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