Month: April 2011

Guess what came in the mail on Monday?

Can you guess?

It’s probably pretty difficult without any clues, isn’t it?

Well, here is a hint….actually it’s not a hint…it’s just what came in the mail on Monday!

Children who have a life threatening illness are granted a wish.

Angelica, unfortunately, is eligible to receive a wish. I wish for all the wishes in the world that she were not eligible (as in, she was not dealing with cancer and the resulting chemotherapy) and yet she is. And so she gets to wish….

She has been referred to the Children’s Wish Foundation and on Monday the application came in the mail.

The different Wish Foundations are amazing.

If you have an opportunity to give to a Children’s Wish Foundation, please do……think about us. Think about all that we’ve gone through on this crazy journey and all that we have yet to go through. It’s personal. There are so many kids going through life threatening situations and to have a “wish” to give you hope, to brighten your day, to encourage you to keep going when things are tough, to put a smile on your face when you least feel like smiling…..it’s a powerful thing.

I never look at opportunities to give to BC Children’s Hospital or the Miracle Network, or Balding for Dollars or any of the Wish Foundations, the same way that I used to. It’s real! It’s personal.

They have given so much to us, to our family…….to Angelica!

If you have the opportunity, please give. There is a Balding for Dollars Event coming up at BC CHildren’s Hospital on May 7th, and if you are interested, you can go to their website and give….

This is not just some nebulous foundation that does some random nice things one in a while. We have personally benefited from the Balding for Dollars Foundation and want to be able to see them, help others.

Angelica contributed to the Kourageous Kids Calendar and although it’s already partially through the year, you can still purchase a calendar and have a piece of Geli’s Artwork.

We imagine all the people who have given to allow Geli to have a wish and we are so thankful for each and everyone…….

Well, Geli off and got herself a fever which earned herself a trip to the hospital and BAM….here we are doing this whole stupid song and dance again.

The pre-story goes something like this….

Judah woke up at 2:30am early on Sunday morning and when I picked him up from his crib he felt quite hot. We took his temp and he rocked in at 38.7 degrees Fahrenheit. Not too bad, but definitely a high score….I stripped him down to his shirt and diaper and brought him to our bed to nurse.

I lay there for a minute and then asked Jon to go and check on Geli. Fever’s are not our friends and seeing as we’ve been exposed to pretty much the same things, and because Geli’s immune system is compromised – there’s a good possibility that she could have whatever Judah’s got going on. Combine that with the fact that she’s been coughing and snotting and well…..the odds just keep increasing and increasing and not in her favor…

Jon came back a few minutes later and said that she was at a 37.7F And that started off the not so fun and amazing night of no sleep. There are just so many factors to take into consideration….does she have any neutrophils? Is this a virus? Is this a bacterial infection? Was she just too hot under her million heavy blankets? Jon told her to take a few blankets off and that he’d test her again in half an hour….well, half an hour later it was only down .1 of a degree. Between Judah, who managed to get to a 38.9F and Geli who hovered between 37.2 and 37.8 and one wicked nightmare that happened in the 15 mins of sleep I managed to get (in my dream, Jon came and told me that Josiah had some weird disorder and had 24 hours left to live – if that doesn’t just wreck your night, I’m not sure what will)….I lay there fighting against the stress and fear, only barely holding myself together.

To say it was a rough night, is putting it mildly.

We woke up the next morning and Jon was supposed to speak at church that morning, but with the threat of Geli spiking a fever, he canceled and stayed home with us. I’m really glad he did because I think the kids would have stressed out more if he had been gone all morning and then left for an undetermined period of time.

Her temps never went over 38F, but they did hover in the mid 37’s and so we finally called the Pediatric Oncologist at the hospital and talked about possibly bringing her in. We decided to wait until 5pm and make a call then. We were just trying to avoid a middle of the night panic filled trip into the hospital. Those suck even more than a somewhat expected or planned visit. We took her temp just before 5pm and it was at 38F on the nose….SUCKS! We waited for another half an hour, took it again and it was up to 38.3F and so it looked like we had our spike.

They piled all the pre packed stuff into the car and headed into Vancouver.

Once they got there, her temps were back down to 37.7F but her counts here borderline low and so they admitted her.

Here at home, we had prepped the kids that this hospital stay may be 16 or so days. 2 or 3 days for a negative culture and then 14 days beyond that….We figured that if we just wrapped our brains around that then anything better than that would be a bonus. Putting the kids to bed last night was a bit of a trip. There was no screaming or massive meltdowns like the last time Jon and Geli went to the hospital, but everyone was wired. We sat down on the couch with a couple of bowls of popcorn and watched Ice Age 2 to try to settle the kids down.

And then, because everyone was feeling a bit “upset” by this interruption to our everyday events, the 3 kids decided to bunk together in Angelica and Alexandra’s room. Jeremy slept on a fold out mattress on the floor and Josiah was on Geli’s bed and Xani was, of course, in her bed. Unfortunately, the days events were too much for Siah who just would not settle down (dont worry Geli, he didn’t break or wreck anything of yours) and after about 45 minutes….Xandra brought him back down stairs. Seeing as Judah was still sick and feverish and wouldn’t let me put him down, I called my momma to help me out. She ended up just taking Siah to her house for the night and then brought him back this morning. It was such a huge help.

Judah finally settled around 9:45pm and I was in bed by 10:15pm myself. I read a little and had my own bowl of popcorn and then went to sleep. After the night before I was hoping for a decent night of sleep, but with how off and cranky Judah had been I was expecting him to be up at least half a dozen times. He slept all the way through until 5am and so did I. Thank you, God!

As of this morning, Geli’s counts were low enough to score her some red blood but not completely decimated….just mostly! She also tested positive for a fairly common virus but its also highly contagious and so she been moved from the familiar oncology ward to an unfamiliar cardiology ward. This is great for all the other immuno-compromised oncology kids who wont get sick because of her, but sucks for Geli and Jon because none of the cardio staff know Geli and it ends up being ” a little of out of sight, out of mind” scenario. Basically, the staff of the oncology wards are amazing and obviously know their stuff, and it’s not that the cardio people don’t know their stuff, but they don’t know the oncology stuff and really they have no reason to know it….it’s just not as optimal as being on the regular ward.

So, we are in the most hated waiting period. We must wait for 48 hours from when the blood is cultured to see if she grows any funky bacteria (this is on top of the positive viral culture) and then it all depends on her counts. If she’s too low (as in has no neutrophils – the infection fighting white blood cells) then she’ll have to stay until her body starts making some. The worst problem is that the precautionary antibiotics that she is on, can also lead to her being neutropenic….so it’s a catch 22. She needs the antibiotics to not catch a bug while her counts are low, but the drug that they like to use on her, can keep her counts low…..not fun eh?

So basically we need

-for her to get over this virus,
-for there to be no bacterial infection,
-for her counts to rise,
-for Jon to stay healthy,
-for her to not pick up any bugs while at the hospital,
-for us to be peaceful and calm here at home,
-for us at home to stay healthy, and
-for them to be able to come home soon