Throwback Thursday #3: Two Years Ago

Continued from here

"What is important in life is life..."

"Baby's steroid makes her cranky. She's in general pretty bull-headed, and feisty. But this is so much worse. She caught Snork grabbing a french fry (that she wasn't even eating), and about melted down. She told her sister she can't watch tv in her room. It's frustrating, because I don't really know what to do. I mean, I'm generally a pretty consistent disciplinarian, but... How do you discipline a kid on a drug that makes her act unreasonable?"

You can CLICK HERE to make a donation to Pediatric Cancer Research Foundation.

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We spent the first several days in the hospital in the Oncology ICU. The nurses told us we could start hanging up Gabby's artwork, so we knew it would not be a quick visit. In addition to the leukemia, her liver function was concerning the doctor, AND she pneumonia. She was a tiny, tiny person to take in all of that.


Trips to Xray were really annoying to her - but she grew more accustomed to them, and would lie still for the radiologist.

On the 5th day, she went into surgery to insert her port. CHOC, her hospital, is adjacent to St. Josephs, and they bring the kids to St. Josephs for surgery. We were wheeled all around through underground tunnels, and by the time we got to the surgery center, I was LOST.

We weren't allowed to be with her for the surgery, so when they put her under, we were promptly kicked out of the way.

2 years later, watching the anesthesia hasn't gotten any easier.

We managed to find our way outside to a coffee cart in the front of the hospital, and I ordered a chocolate raspberry flavored coffee. I spent the rest of our stay trying to find that damn coffee cart again, and never succeeded.

After her port was inserted, she was able to get the IV's removed from her arm - all of the tubes were  inserted through her port, instead. After the surgery, she refused to wear a shirt for DAYS.

We were moved to the oncology department after the ICU, to an isolation room. Because of the pneumonia, they didn't want to risk exposure to the other kids. Chemo - and cancer - suppresses the immune systems, so until Gab's lungs cleared out, we had a giant room to ourselves.

We spent A LOT of time doing crafts....

 

Because Gabby's blood pressure was elevated (due to the kidney issues), she was put on a strict low sodium diet. We tend to eat pretty well at home, and being in the hospital, all she wanted was her favorite things - french fries, mac and cheese, etc. But she couldn't have them.

We started on our daily meds - fourteen in total at the beginning. Some chemo, some for her blood pressure, some for her kidneys.

One of the meds we were warned about - The Steroid.

The oncologist and nurses referred to it as "The Dex". Sounds so ominous. They warned that it tastes vile, everyone has a hard time getting their kids to take it, and the side effects are brutal - they said it would make her mean, unreasonable, and HUNGRY all the time.

When they explained these side effects, I thought there was no way my child would be telling me what she was eating when, and NO WAY she would get away with just being rude. Ha.

We tried to give her the pills - Dex comes in either a super gross liquid form, or super gross pill form - but she had never had to swallow a pill, and it was awful. We tried crushing them up and adding them to delicious things. Pudding, ice cream, both failed. We ended up giving her the liquid, and just getting it over as fast as possible.

With all of the meds, there were so many restrictions on them - this one with food, this one on an empty stomach, this one without citrus, this one 2 hours after eating. So any delay on her part in taking them threw everything off. It completely stressed me out and made me crazy.

It was compounded by her suddenly terrible attitude. If you've met Gabby, you know that she's a nice kid - she's just NICE. She's sweet and thoughtful - and I know everyone wants to think that about their child, but it's actually true.

She turned into a pretty unpleasant creature pretty quickly after the Dex was introduced. Which made the medicine giving tricky. For a small person, she was remarkably difficult to force feed.

DO I LOOK PLEASED?

After the blood pressure was resolved, she was allowed back to a regular diet. Apparently, that regular diet consisted of string cheese and donuts. Lucky.

The H and I spent our time divided - during the day, we stayed with her, then we'd swap out who got to go home. We tried eating in the cafeteria once, and it was terrible, so a LOT of fast food was consumed. A LOT.

During the weekends, I tried to get the older girls out for a bit - we spent the day at the Discovery Science Center on one Sunday, another day wandering a mall down the street. But most of my days were spent at Gab's room, watching VHS tapes non-stop. She refused to go to the Child Life room. She barely interacted with the volunteers who came to play with her. She was pretty rude to friends that came, even when they came bearing gifts.

That might have been the worst thing of all - that she was always SO kind and sweet, that it was like an entirely different tiny person, being so rude and obnoxious.

Throwback Thursday #2: 2 years ago....

"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.

Throwback Thursday - 2 Years Ago

Two years ago, at Gabby's pre-school holiday party, I noticed some red dots around her eyes...

I took her to the doctor - she'd had a cough, but so did everyone in her class. I didn't think much of it, but the dots were a little disconcerting. The doctor checked her out a little, but said it was likely just from the coughing, and that it would fade away.

That was the week before Christmas.

The holidays are always busy for us (like everyone, I know). I work in consumer goods, so Christmas is BUSY, and immediately after is busy with returns. #1's birthday is January 2nd. It's general chaos. I remember being vaguely concerned about Gab, but in general, assumed the time away from the sick kids in her class, and resting at home, would cure the nagging cough. I am a pretty tough mother to rattle.


Exactly one week after this picture was taken, Gabby was admitted to the pediatric oncology ICU, and diagnosed with leukemia.

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Looking at those pictures now, I cannot fathom how we didn't realize soemthing was wrong with her. She looks so tired, so pale.

In the end, it didn't really matter, the course of treatment for her would have been the same, regardless of when she was diagnosed.

As I have the last two years, I'm fundraising for Pediatric Cancer Research Foundation.

PCRF is a local organization, which is one reason I like working with them. I joined them for their first fundraising season, and I've met amazing people working with them. Another, big, reason I selected PCRF to focus my efforts on, is that they commit a high percentage of their funds to go directly to pediatric cancer research. Since their inception 30 years ago, they have awarded over $24.5 million in research grants, funding research to improve treatments, improve the quality of life, and find a cure for childhood cancers. Sure, it's not much compared to the big TNT's out there, but they are passionate, and committed - and I love that.

Last year, during my fundraising, I was lucky to have a couple of guest bloggers, who detailed their experiences related to volunteering at children's hospitals and working with oncology patients. I wrote a lot (A LOT) about the numbers, the facts behind pediatric cancer research, the statistics.

This year, we're approaching the end of Gabby's treatment. She'll be officially released from treatment while I'm training with PCRF's VIP group to run the Reaching for the Cure Half Marathon in May.

This year, I want Gabby's journey to do the talking.

You can click HERE to donate to PCRF, to help find a cure. Or volunteer. Or just follow along, and spread the word. Pediatric cancer research is grossly underfunded, and needs all the help it can get.

Because cancer really, really sucks.