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