"Hope is the Dream of a Soul Awake"
{We got an official diagnosis of Acute Lymphoblastic Leukemia. As far as leukemia
goes, apparently, this is not too bad. Gabby's prognosis is very, very good -
she has a 95-97% chance of being totally fine when this is over. But it's a long
road to being over. She is starting chemotherapy treatments today. She'll
continue with treatments for at least two years, in varying degrees. The first
moth[sic] is pretty intense, then it might change slightly. She will loose her hair.}
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When I brought Gab to urgent care, they sent us to the ER. The ER had her in a bed in a room within just a few minutes (on a holiday). The doctor saw us briefly, then came back 20 minutes later, paperwork in hand, saying he'd already spoken to the children's hospital, and arranged an ambulance immediately.
The oncology ICU was waiting.
They try to do what they can, you know, to make the kids comfortable. But there's only so much comfort to be had. We obviously hadn't planned on being here. We had nothing with us.
It was a Saturday, January 1st, and late, so we had only a resident who briefly looked at her charts, but was hesitant to say anything. We had to wait until rounds the next day to get any further news.
Lora, my oldest, turned 12 the first day we were in the hospital. My cousin brought us a cake, which we ate in the ICU. The leftover cake was shared with the nursing staff that night.
We met with the oncologist around lunch time the Sunday, where he gave us his best educated guess (and he turned out to be right). But in addition, because of the way her body was slowly breaking down, she'd developed some kidney problems and pneumonia.
To confirm the diagnosis, they performed a bone marrow aspiration on Gabby. We were not allowed in the room with her, and had to leave when the anesthesiologist came in.
This was on Monday. We left, a friend of mine was just getting there to visit Gab, and I ducked into the waiting room, "for coffee". That was the first time I cried.
They started chemo immediately - even before the initial diagnosis was confirmed.
Every time someone came in to do something - and there were a lot of someones doing a lot of somethings - she got a new toy. We could have opened a My Little Pony shop by the time we left the hospital.
A few days after we were admitted, Gab had surgery to implant a port into her chest.
The chemotherapy she receives is so harsh, that introducing it via IV would wreck her veins, and it would be useless. Instead, she receives some chemo through a port, placed over her heart, with direct access to the superior vena cava, the only vein in her body that can handle the chemo.
I stayed at the hospital with Gab for the first 3 days. When I left the hospital for the first time, I'd had minimal sleep - hospitals are not inherently restful, particularly the ICU - and got lost trying to get out of there. I'd come in with Gabby in the ambulance I had no idea where in Orange County we were, and certainly no idea where my car was. I looked at the map on my phone, the H told me where we were parked, but none of it made sense to me. I was feeling pretty foggy.
My husband and I traded nights at home - one of us stayed home to get the older girls ready and out for school, the other stayed at the hospital with Gabby. After the girls were at school, we'd meet back at the hospital. Then back home to pick up the girls or start homework. Most nights, we'd meet at the hospital for dinner, then switch off. Start over.
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Yesterday, we went to the clinic for Gabby's routine blood work. If all goes according to plan, she'll have just a few more clinic visits, and one more lumbar puncture before her end of treatment in March.
How far we've come.
You can CLICK HERE to make a donation to Pediatric Cancer Research Foundation, supporting cutting-edge research to improve treatment for kids like mine.
What a long road, but what a fantastic thing that you are nearing the end of it! Nothing better!
ReplyDeleteI can't imagine being in your shoes. God bless you all :) Thank you for sharing!
ReplyDeleteI hope you got lots of hugs along the way, I cry thinking of what YOU went through not knowing what was going on, having two other kids to take care of, and having to keep your head on straight and move forward. So glad you're at the tail end of this now.
ReplyDeleteNot sure if its having a 5 year old, pregnancy hormones are just being human....but I am tearing up just thinking about what you have gone through! Hugs all around and I can't wait for the day to read that she is done with her visits!
ReplyDeleteOn another note we spent 2 days in children's when my kiddo broke her arm and need surgery and we came home with a truckload of toys as well. My daughter loves picking out stuff from the $bin at Target to take back and donate whenever we can. :)
P.S. I am going to make a donation, I just want to see if I can do it through my husbands company so that we can get it matched.
ReplyDeleteTears and hugs. You are an awesome, strong, mama. I am so sorry that Gabby (and all of you) have had to go through so much, but you all are an inspiration. YAY for the end of this road. :)
ReplyDeleteWhat a long road it is been. I can't wait to Gabs again in a few weeks. She has been so amazing through all this, what a rockstar of a kid you have there! :D
ReplyDeletei can't believe that was over 2 years ago. YOu both are SO much stronger now. WOW, just WOW!1
ReplyDeleteI've been reading your blog for 2 years now, just finding you before or after Gabs diagnosis.
ReplyDeleteI just want to hug you and your family. It's just so, so much.
Kinda cried a bit reading this. It's so darned sad yet strangely beautiful too, you know? Gabby has guts. Heck, your whole family has guts. Hugs for the new year.
ReplyDeleteIts definitely been a long road for your family, but you are close to the end and hopefully Gabby will have a clean bill of health for a long long time. :)
ReplyDeleteyall are so strong. she looks so small and innocent in those pics-seems like so much of changed. Gabby seems so much more mature (maybe not based on the spider eating comments but something in the photos is just different). :) hugs!
ReplyDeleteI remember reading about this day last year and I am still just as amazed by her/your family's story.
ReplyDeleteNo wonder Gab is fearless, I mean, she gone through all the chemo stuff, how bad could a spider taste?
Oh gosh what a long and winding road. You've all been thru so darn much. Here's to some brightness at the end of the tunnel. Happy New Year!
ReplyDeleteSuch a strong amazing girl in such a tiny body.
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