So far

Hi everyone,

I’m not quite sure where to start, so I guess I’ll just start at the beginning. This may be pretty verbose, as I’m going to tell as much as I can. This is also going to kind of be all over the place, so I apologize in advance. Anyway, here goes:

Sunday night, after her bath, Ella told us that it burned when she went potty. We thought maybe she had a bladder infection so we were going to take her to the doctor Tuesday morning before school.

Monday, we got her up and took her to school, she seemed pretty tired but otherwise normal. Monday afternoon, her teacher, Miss Lissa called us and said that something was wrong with Ella – she was very lethargic, listless, didn’t want to do anything, wouldn’t eat, wouldn’t drink, wouldn’t do anything. In fact, as she was on the phone, she said that Ella was sitting at a table, her eyes rolling back in her head as she fell asleep where she sat. Miss Lissa has known Ella for about 3 years, so she knows her quite well, and for her to call us and tell us something like this, we knew it was serious. When Coleen called me to tell me that Lissa had said that, my response was “why are you still on the phone with me? Go get her.” Coleen picked her up, and she could tell from the way she looked that something was definitely not right. Ella kept saying that she felt weak, and couldn’t walk (if you know Ella at all, WAY out of character). Coleen got her in the car and gave her some apple juice, which she immediately threw up. She took her straight to the doctors office, who, luckily, had an appointment immediately. The doctor ordered some blood tests (Ella didn't even flinch when the needle was stuck in her arm to draw blood -- that's how out of it she was), and told Coleen that she didn’t know what was wrong, but something definitely wasn’t right, so to take Ella to the emergency room right away. I was on my way home from work, and Ella seemed to be responding a bit better after drinking some water, so we decided they would wait for me to get home, and then we would all go together. Right before I got home, Ella threw up all the water she had been drinking. We also got the report from the blood test that Ella's white blood cell count was 25,000, apparently indicating some kind of infection.

We went to the emergency room, and they checked her out. We were still thinking bladder infection. During the exam at the emergency room, Ella had some pain in her side, right about the spot where your appendix is. We immediately got concerned – “oh, no, appendicitis, she’s going to have to have surgery to have her appendix out.” They ordered an ultrasound to take a look at her appendix (as far as we know - we still don't know who knew what when), so we went and did that. After awhile, one of the nurses came in and said that the doctor wanted to see us in a conference room (Luckily, my sister, Val, had gotten off work and came straight over, so Ella didn’t have to be alone). I’ve seen enough doctor shows on TV to know that this was not good. “Aw, man”, I thought, “it’s definitely appendix surgery.”

When the doctor brought us in, he told us that the ultrasound had revealed a growth on Ella’s kidney, about 5 centimeters. It was a tumor, and they were telling us that Ella has cancer. They told us that it is most likely one of two types of cancer, either something called a Wilm’s Tumor, or a Neuroblastoma. We asked how sure they were (despite knowing the answer – they don’t break out the C word unless they’re pretty damn sure, and in fact, that is exactly what her doctor said). They called and had an ambulance take Ella to Seattle Children’s Hospital. Appendicitis was looking real good at this point.

I guess I won’t go through all the check in procedures at Children’s. But, after we got there, they set us up in a room in the SCCA department (Seattle Children’s Cancer Alliance). We got a little bit of sleep and then went in to get a CAT scan Tuesday afternoon. The CAT scan revealed a little more information – it looks like the tumor is not attached to her kidney, as originally thought, but they can’t be sure. It definitely looks like her adrenal gland has been affected. The other thing that the CAT scan revealed was that the tumor was bleeding. As to why, no one really knows. Tumors are nasty little fuckers, and their entire purpose is to grow as much as possible as fast as possible. They think that the tumor probably stole a blood vessel or something to feed itself and grow as much as possible, and in the growing, it ruptured. They took several blood tests over several hours and the main measurement they were looking at was a CBC, or her (I’m spacing a little here, so this might be wrong) “hemocrit” number. It’s basically the concentration of the blood in your system. Ella’s was dropping, and dropping fast (the first one we got, she was at 32, the next, 27, the next, 22 – they told us that usually when someone hits 20, they get a blood transfusion, around 15, I think it was, you start losing consciousness and such). Blood was ordered for her, as they were, obviously, worried. They told us that they were going to do the transfusion and see what happened with that, and that if things took another turn for the worse they would be moving her into the ICU, and rapidly into surgery. They also put her on a monitor to watch her respiration, blood pressure, and blood oxygen levels. They took one more sample before they gave her the blood (it turns out it tested around 22 as well, so she had stabilized, but better safe than sorry). During the transfusion, Ella started to get a rash, sort of like hives, but it never got far enough to officially be “hives” (this is a normal side effect from transfusions they had warned us about, so we were watching for it). Both her ears became fire engine red, it went down the side of her neck from there, and around her neck in a “necklace”, it had also started to get on her face a bit. They gave her a dose of Benadryl, and it immediately cleared the rash up.

I forgot to add in there – she was on constant IVs for saline, and some sugar water to keep her hydrated. She hadn’t had much of an appetite (she voluntarily didn’t eat anything all day Monday, and because of the chain of events of the CAT scan, and then the situation she was in, and possibility she might be in surgery at any moment, she wasn’t allowed to eat or drink Tuesday or Wednesday), and had thrown up pretty much all the water she had to drink on Monday.

After the transfusion, her CBC level was at 31. They continued to check her levels every 4 hours over the next couple of days (with us eagerly awaiting the results). It bobbed and weaved a bit, going to 29, 27, 28, 27, etc, but always within acceptable levels (and even within the margin of error for the test). As far as the bleeding, what they THINK happened – the kidney and adrenal gland are in their own little sac, separate from the rest of the organs. They think that the tumor bled, filled up the sac, and then the sac started to push back. The blood started to clot, and tapenade itself, stopping the bleeding by itself.

Everything stabilized very well, and they spaced out the CBC tests. I can’t remember the exact timeline, but we are now down to once a day. Everyone has been very impressed with Ella and her progress. I had a surgeon tell me “she is showing us how it’s done”, and one of the medical residents tell me “she went from being very unstable and scary to incredibly stable.” She’s an amazing little girl, my daughter is.

Anyway, things are still somewhat touchy, what with the area around her kidney still filled with blood, but at least the bleeding has stopped, and, as I said, everyone is very pleased with her progress.

They are still not sure what type of tumor it is, and are not going to find out until they do the surgery. They have passed on doing a biopsy of any kind, as with the situation with the blood, they don’t want to mess with anything and risk starting the bleeding all over again. They have done a few blood tests, but unfortunately the way the blood tests work, if they come back positive, they know for sure what kind of cancer it is, if they come back normal (“negative”), they can’t be sure one way or the other if it is that type of cancer. They’re just sort of “helpers.”

We haven’t done any research on the cancers (actually, that’s not completely true – I googled Wilm’s tumors and read the absolute basics off of the Wikipedia page – but that’s it). From what I understand (as sick as this sounds), Wilm’s is the one that we want her to have. I’ve gotten some anecdotal information that with Wilm’s Tumors, once they are removed and all treatments are complete (i.e. Ella is cancer free), there is a 75% chance that the person will be cancer free the rest of their life. Also, if it ever does come back, it will almost always be around the kidney, so it is easily and quickly spotted and dealt with. I don't know how accurate that is. I ask if anyone does decide to go nuts with the google, please don’t share it with us. We came to the conclusion that even if we did google and learn everything there was to learn about these things, the only thing we would still know is that Ella has a tumor, and they are going to cut it out, and deal with it. Knowing statistics and all that other crap doesn’t do us any good.

Where we stand now – surgery is scheduled for Tuesday, we think at 12:30. They scheduled it so far out, as they want to be sure that everything is as stable as possible before they do surgery – surgery to stop internal bleeding is risky enough, surgery to remove a tumor is risky enough, combining the two is something you want to avoid if you can. If they absolutely have to, obviously, they will do so, it’s just something you want to avoid. The tumor is apparently 7cm in length, we're not sure on the width/whatever other measurements. Ella will almost definitely lose her adrenal gland, they're not sure but they THINK the kidney may be okay. Either way, the loss of either of those should not affect Ella in any way. We will be staying at Children’s until the surgery Tuesday. After the surgery, they will move us to another room, either in the ICU or Recovery area. They are testing her blood once a day, in the morning. They have removed all the monitors, instead spot checking her every few hours. She’s also gotten her appetite back a bit, and has been willing to drink enough, that they’re letting her be off the IVs all day. Today she woke up, asked to be disconnected from the IV, and wanted to go on an adventure, so we wandered pretty much the whole hospital. She hasn’t been hooked back up since. I’m not sure if they hooked her back up overnight (it was a possibility that was mentioned) – I am home tonight to try to get some things taken care of and get some uninterrupted sleep (Coleen did the same last night), but the report I got from Coleen is that Ella’s appetite was pretty good, and she had been drinking quite a bit as well, so probably not.

I guess that’s everything, just wanted to give anyone who knew an update, let anyone who was unaware know what was going on, and make sure everyone had the full story (as far as my addled mind can recall).

The doctors and nurses that we have had have all been amazing. I can’t say enough how great they’ve all been. Everyone loves Ella. We are lucky enough to live near Seattle Children’s Hospital, as they are ranked #5 in the country. We are lucky that my sister, Val, moved up here to Seattle just in time to be here in our time of extreme need. She has been ridiculously helpful. We are incredibly lucky that Miss Lissa knew Ella well enough to know she wasn’t right and call us. We are lucky that our doctor, Dr. Hathaway, was astute enough to trust our instincts, and to send us to the emergency room. It’s been one hellish thing, but we’ve had our good spots along the way.

We have told Ella that she has a bump or lump in her tummy, and that the hospital is “our new home”, and that while the “other home” is still around, we are going to be staying at this new home for awhile while the doctors and nurses fix the bump.

We are in Seattle Children’s Hospital, room T3267, bed 1. I don’t expect anyone to send anything, but if you do, please just know that flowers are not allowed in the area we are in. If anyone wants to visit, please talk to us first, and also know that if you are at ALL sick, even if you have the sniffles, you will not be allowed to visit us (not our rule, but one we’re firmly behind).

I’ve e-mailed a lot of people here, some people I’ve not talked to in quite some time (I apologize for that, by the way). I don’t expect you to reply or anything, the only thing I ask is that if prayer is your thing, I’d appreciate you throwing some Ella’s way. If not, sending a few good thoughts her way would be nice. That goes for everyone, actually.

Feel free to e-mail (use this address, as it goes to my blackberry, which is around us pretty much all day), but I can’t guarantee a reply. Feel free to call, but, again, I can’t guarantee we’ll answer or call back, but I promise to try.

I set up a blog for Ella, it is located at http://ellasultan.blogspot.com For now, the only thing on it is this e-mail. I plan on asking Ella if she has any messages she wants to share with everyone, and if she does, I will have her dictate it to me, I’ll write it down, and then let her type it in one letter at a time (assuming she wants to), as she loves typing on the computer. We’ll probably also throw any updates on there.
I’ve emailed everyone I could think of off the top of my head, but I’ve in no way gotten everyone, so feel free to forward this to anyone you think may want to know.

Lastly, please don’t reply-all to this e-mail, I have a lot of people copied on here.

Love ya all, and thanks.