Wednesday, June 30, 2010

A busy pre-Canada Day day

This picutre was from last week while we were out for a walk.

Well these past few days haves been quite busy medically for Charlotte.
Monday 28th we had a 10:00 appointment scheduled in the clinic for blood tests, but Charlotte thought we should go in sooner. 6:00am she woke up like a baby dragon (fire and everything) she was mad and grumpy and would bite your head off if you looked at her wrong. By 7:00 we were coherent enough to realize she had a whopping fever so we got our things packed and headed over to the hospital early. We were the first ones through the door when they opened the clinic at 8:00-even before some of the nurses were ready, usually people don’t show up until 9:00. So we got her regular blood tests done and some extra sent away for bacterial cultures to learn more about her fever. Once we finally heard back about her blood counts they were low so she needed both a platelet and blood transfusion. So then she has to be cross matched for donor blood, that ordered... wait wait wait... gave her some Tylenol to bring down the fever a bit (it was 39degrees)... then the Benadryl (she had a reaction last time so now she gets bonus meds) and platelets takes about an hour to infuse and monitor her... then the blood goes in over three hours... two different broad spectrum antibiotics were started...she had not had much to drink the couple of days prior... so we gave she some saline fluids... By the time we were done everyone else had left (even some of the nurses) the cleaning lady had swept and mopped the floor, stripped and sanitized all the beds (there are 10 in clinic.) 6:00pm! ...I think we now hold the record for the longest time in clinic, 10 hours! Then finally we were admitted over to the main unit and here we have been since!
Her blood cultures have come back negative, which is great. That means that we have no idea what caused this fever but at least it’s not something bacterial that is in her blood stream. Her fever was actually on its way down by the next morning so we just have to stay healthy through the “monitoring period” and we should be discharged tomorrow.
There was a lot going on again today, but a lot more fun! We are gearing up for Canada Day. The Kinsmen were around with ice cream sandwiches and flags. A one man band was in (think real Dick Van Dyke style.) The hospital hosted a bingo game... Charlotte was sleeping but I played in her honour. Plus she got MORE blood today and her “day 14” chemo drug. Kids Cancer Care foundation puts on a pizza night every Wednesday so we got that treat too.
We also had sit down with Dr Lucy (our primary doctor) and were told about what to expect for our next three rounds of chemo. Oh it’s going to be a fun ride that’s for sure! But that story is for another day.
Enjoying a bike ride at the RMcD house, you cant see it but there is a sidecar with her teddy bear in it.

Rant for the day... A musician in the oncology ward at a hospital should not sing “You are my sunshine” Seriously!?! We have heard it two or three times now... sure we all think the title is cute but listen to the first verse...

The other night dear, as I lay sleeping
I dreamed I held you in my arms
But when I awoke, dear, I was mistaken
So I hung my head and I cried.

And what about the last two lines of the chorus!!!???

You'll never know dear, how much I love you
Please don't take my sunshine away

In the very wise words of Whinnie the Pooh
"Think, Think, Think."

June 24th Thursday: Fun at RMcD House

Up until yesterday (June 28th) things have been going well for this round of chemo. But I will get to that in another post later. Back to June 24th. Charlotte has been eating a bit on and off and her weight is a little more balanced than the past rounds. She has her “dragon” days but she also has been having some pretty good days. We are very encouraged because she is learning some new words and has put together her first sentence! It is so clear that even the nurses understand it...”I don’t want it!” Usually it’s in regards to having her blood pressure taken, or medicine.

The weather has been quite nice here and we have gotten out for a couple of nice long walks. We have also been having fun at the RMcD House. One fun thing to share is that we (I mean she) got to go into the Magic Room! For those who have not visited us here.... here is door that we see every day.

We were (I mean she was) very excited to get a trip in there, it’s a special room used to lift the kids spirits and give them a treat. Typically the kids are allowed in there after a big medical procedure, or on their birthdays. Inside is a magical little world, beautiful murals on the walls, special little windows with vignettes to explore, a fancy throne fit for a queen... and a really big key to unlock a secret door. We were (I mean she... who am I kidding, I was totally enthused) so excited for a trip in there, behind the secret door there was a miniature Toyland, there was one of everything a kid could want. Charlotte picked out a little purple Dora the Explorer backpack that folds out into a chair, and it had some dress up clothes inside, she was pretty thrilled with it. She was so cute packing it around the rest of the day.
Here is one of our new friends we have made here, “Sully” from Monsters Inc movie stands guard at the top of the stairs. Every morning on our way down we have to stop and give him a little pat.

Here she is being silly with the floor vents, she and Yolanda discovered this trick one day-it sure makes everyone laugh. She knows she is cute.

Sitting out in the sun on the steps of the RMcD House. We wanted so badly to spend time with Yolanda but she had a sniffle that just would not go away and since Charlottes immunity was decreasing every day we just could have her too close- yet again. Here we are waiting for a ride back to Cranbrook for her. We were so sad to see her go but it would be even worse if Charlotte got her cold. Hopefully things will pick up for her soon.
I was hoping to get two posts done tonight but its way past bedtime already so we will have to save the current stuff for another day. Please keep Charlotte in your prayers specifically for her not to be sick-we were admitted yesterday with a fever but it seems to have come down already. So we are back in the hospital for a few days at least while they test her. Thanks, Love Allison
ps. if you click on any of the picutres it should open it up larger for you to see

Saturday, June 19, 2010

June 19th Saturday: Another round of Chemo down

Finally off the drugs! We should (knock on wood) be discharged to RMcD house tomorrow. This round of drugs was wonderfully uneventful, besides the fact that we started late. She was scheduled to start this round on Thursday 10th but her blood counts were not strong enough. We were more than happy to sneak home for a few days with the intention of getting started on Monday 14th. When her blood was checked on Monday we were delayed even longer in hope that she would be stronger by Wednesday... if we had known that Monday was in question we could have likely got her blood tested at home and stayed a couple of extra days. Sigh, but now we know for next time, if we get that chance again that is!

We brought Yolanda back with us this time; the girls both had fun playing at the house here while we were still waiting to hear when Charlotte could start. Once we were admitted we sent her out to stay with her Oma and Opa in Bragg Creek. She sure has fun there with her Aunties and Uncles. Hopefully we will get her back tomorrow for a few days before Charlottes emotional and physical thunderstorms hit (usually by day 7.)

We had a little trouble with Charlotte’s magnesium levels today being too low. Two IV bolus shots later and the Doctors were still not really happy with it. So we have added yet another oral drug to her repertoire ... let’s see I think that makes 7 different ones she gets-on top of all the crap that goes through her IVs. To make it worse she getting smarter and more persistent with not taking her oral meds; she has figured out how to block her lips closed with her tongue, flail her arms in front of her face and do various head thrashing movements all at once. Fun.

Well, it’s my night at the hospital so I better wrap this up........wish us luck for a good nights sleep! Allison

Sunday, June 13, 2010

Home for a Moment

We have been home for a few days! It has been a wonderful time to unwind with our family and to tie up some loose ends. Charlotte’s blood counts were not good enough to start her next round of chemo as scheduled. Unfortunately this means it will push back everything a few extra days...BUT!!! It meant that we got to sneak home! She should have started on Thursday 10th but is rescheduled for Monday 14th.

Backtracking a bit here... Charlotte thankfully never got Yolanda’s cold. The first week of June was fairly uneventful, lots of time spent in clinic waiting around for different things. One day we sent her blood samples away and two hours later our nurse phoned the lab to see what was taking so long... they had a fire drill! Once her counts were finally back they decided she did need a blood transfusion, so she was cross matched for that, and we waited some more until the blood showed up. Three hour transfusion, half hour monitoring afterwards... what started out to be a quick check-up that morning ended up being a full day, we were the last to leave the clinic.
She had a kidney test last week, and we are assuming that all is well since we have not heard otherwise. She also had a hearing test but was very uncooperative and we didn’t get a good reading. She does not seem to have any trouble with her hearing so far.

Here are a few pictures of our past few days... real grass under our toes, sure feels good.

We went to visit Charlottes Great Grandma, here she is playing in my Aunt and Uncles garden.

Shes looking a little pale and skinnier than her old self but still has quite a spark and big smiles for everyone.
Here she is with a teddy bear that her Oma and Opa won in a draw, did she ever light up when she saw him!

Tuesday, June 01, 2010

Update for the past two weeks!

I thought I had better drop a line to let everyone know we are still here! Since her stem cell harvest we have been busy. Charlotte had a hearing test that came back strong on Tuesday 18th, and then we were discharged to RMcD House for a couple of days. Chemotherapy started again that Thursday, we started out with the drug she had the terrible reaction to last time. She was put on 4 hours of hydration to open up her system a bit first and then the drug was administered over twice the amount of time. Things went well although it made for a looooong day; she did not finish her chemo that night until 1am. Day two of chemo went much quicker and we got a visit from the physiotherapy girls that had worked with her right after surgery. They were very impressed with her range of movements that have come back since then. We were given a list of things to try to get her to work on to try and strengthen her right side. She is still really favouring her left side (both her leg and her arm) but she CAN go through the range of motions needed.

Saturday 22 was day 2 of chemo; the drugs were all going well so I left Rob and Charlotte for a few hours and snuck out to my cousins wedding. It was beautiful, it was nice to be “out” and have something so wonderful to focus on for a change. Then Sunday the doctors were happy with how Charlotte was doing and we were discharged again. Since then she has been very low energy and grumpy in general. She is prone to having little angry fits for no reason; it’s hard to see our happy little sunshine in such a storm. She really has not been eating much lately either, that’s something we would really appreciate some concentrated prayers for. We have been threatened with a feeding tube several times now as her weight fluctuates around the 10kg point but she manages to squeak out another day each time. We were hoping having her sister her would perk her up.

Friday 28 Grandma and Grandpa brought up Yolanda, we were hoping that she could spend the week but things turned out differently. Sunday night Yolanda came down with a cold so we had to make arrangement to get her out as soon as possible** since Charlottes immune system is at rock bottom. Now we are on pins and needles watching Charlotte for any signs of sickness. Monday she had a long boring day in clinic (10am-5:30) getting a blood transfusion. That brings us up to today, she has a little more colour in her cheeks but is still not eating anything.

**Thank you so much to all involved for the extra driving! Mom, we are so sorry to hear about your car, I guess it was time for a new hood and grill!!


In school I used to hate doing these little poems, I thought they were boring and would whip through the exercise as fast as possible. Putting Charlotte to bed tonight I started to think about what her name spelled for her at this point in time. Having a little one with cancer means many things. We try to take on day at a time.

Our lives are filled by Charlotte:

Compassion, we have seen an amazing outpouring of concern and support for our family

Hope, although they could not give us a prognosis we are optimistic that she will be totally cured

Alberta Children’s Hospital, we have an amazing team of doctors and nurses here that understand these little ones

Ronald McDonald House, we spend most of our time here and appreciate the many caring people who work here

Love, we feel this everyday though your emails, cards and calls

Operation, glaring us in the face is a scar that while tough looking whispers, total resection happened here

Trust, we are putting a lot of faith in our doctors for her treatment which at times is beyond our comprehension

Tired, if the baby doesn’t sleep... nobody sleeps!

Emotional, not a day goes by without a little roller coaster ride