Busy, Busy, Busy!

Hey everyone!

First off, I have to apologize for my lack of posting again. I realize that being MIA in the blog world has caused a lot of concern. We are all fine. Victoria is doing REALLY well :) The truth is, if we were back at the hospital, I would most certainly be blogging because I'd need to do something to occupy my time.

Being home is wonderful yet I've never been so busy. The kids have been a lot of work. They have been through a lot lately. Jake has been spoiled by all kinds of family and is having a hard time re-adjusting to our routine. Mostly, he just wants his mommy (ALL THE TIME!) Victoria is also used to having our undivided attention. At the hospital, when we weren't doing medical related things, all we did was play, colour, eat, watch T.V. together etc. It's a big adjustment for everyone. Our new day to day life includes taking Victoria to the hospital 2-3 times per week for day treatments, giving her all of her medications (including twice daily injections), finding occasional care for Jake, home care nursing, work and trying to get the household back in order after 2 month of neglect.

Victoria has been such a great little warrior through this all. She impresses me so much. She has never once complained about having to go back to the hospital. On the days that Jeff takes her in for treatment, upon my arrival home from work, she loves to yell at me that she got to come home! We never promise that she will be coming home, because that wouldn't be fair, so she doesn't take it for granted.

Her white blood cell counts just came back up to the level the doctors wanted, so on this past Monday, she re-started another round of chemotherapy. It's a mixed bag of IVs, injections and pills. She still has a blood clot that she had developed around the time when her first port was removed. It's clearing up as well, but she still needs to be on blood thinners. The blood thinner that is the most compatible with her chemo is, unfortunately, in injection form. We have to give it to her twice a day. Giving her these needles is, by far, the worst part of the day. It takes both Jeff and I to do them. On the three days of the week that I work early, I have to wake her up to give it to her before I leave - not the nicest way to start off your three year old's day!
Her appetite is still not up to par. She still usually picks an item and then can't get enough of it. For days all she ate were grilled sandwiches and then it was pizza (at all hours of the day). Thankfully, she has gained back a bit of weight.

In happier news, she loves playing and fighting with Jake. We have a new little niece and she talks about her all day. Last weekend, her blood counts were not half bad and we knew that with the upcoming new chemo, that they would be lower soon enough. We took the opportunity to drive to Montreal for a little surprise visit to meet the tiny, beautiful Aria. Victoria is so in love with her and even asked to take her home.

After having sewn an insane amount of monkeys, my sister, Lisa, has decided to pass the torch along. Jeff's family is now taking up the sweat-shop business and have been making some really cute, creative monkeys. My co-workers have been making new monkeys with a valentine's Day twist and now some Olympic themed monkeys have been showing up. Again, thank you for all of you support in making and buying monkeys. We love seeing your pictures of the monkeys in your home, especially the ones with your kids.

Going home

Good news: We are being discharged today!!!!!!!!!!!!!!!!! I can't even tell you how happy I am and Victoria is even happier. We've known since Friday night that her chest CT was "markedly improved"  but we didn't get a definitive answer until later on Saturday. If Victoria could tell time she would be counting down the hours. She had a lot of fun taking her artwork off of the walls and windows last night, packing her bags, emptying the fridge and most of all announcing her departure it to everyone who would listen. It was a lot of fun but the whole time I've been worried that she will spike a fever and we would be told she will have to stay. It would break her heart. She knows that she will have to come back often for more medicine and that there will be times in the future that we will sleep over again but for now we all need a break. This morning we were up early due to the excitement. We had been in the playroom and had a sign made about going home before breakfast even came up.
She has a few more chemo injections to go and then we have to wait and see how her body responds. The next part of this phase of treatment is count dependent. That means that her platelets and white blood cells have to come back up to a specific level before they can give her more. She has been doing fairly well but they are lower now and it's not expected that they will be high enough by Friday (that would be the earliest they could start it).
Today we learnt how to give her her injections. The blood thinner that she is on will have to be given twice a day for some time so we will be doing that at home.
I can't wait to have everyone under one roof! She'll be back at CHEO on Wednesday and Friday for chemo but otherwise the plans for this week and the upcoming weekend are to stay put. Wish us luck!

Update: I didn't have time to publish this post before we left the hospital. We are now home and both kids are happily sleeping in their own beds. I feel like I never want any of us to leave the house ever again :)
I'll put up some pictures tomorrow, I just wanted to get this one up before another week goes by.

I am 3

Victoria is three years old! Well, really, if you are counting, she is three years and seven days. This blog post is a week overdue! On December 31st she celebrated her third birthday. Still on a high from her passes out of the hospital and a few visits from Nanna and Gramps, we got her out on another four hour pass to celebrate with her.

My parents came to the hospital and we had a little birthday party for her in the Sen's Den at CHEO. She proudly showed off her "I am 3" shirt, opened more presents and blew out her candles on her sock monkey themed cupcakes. After her afternoon nap we took her out on a pass to continue the celebration with Jeff's family at Tina and Randy's, not far from the hospital. Once again, she was reunited with Jake and couldn't have been happier. More gifts and cupcakes followed. She has been spoiled and with everyone coming to visit her at different times for both Christmas and her birthday there has been a steady influx of gifts. Hopefully her expectation for presents wears off soon.

Medically, Victoria has been doing very well. There hasn't been much going on. She gets her antibiotics several times per day, various other medications and her chemotherapies depending on the day. The only issue was that last Thursday she had a severe allergic reaction to a chemotherapy drug. This particular drug is known to be more allergenic than others. The first time it was administered, the nurse brought in a anaphalactic kit and watched her the whole time it was running. Everything went well. The thing is, you usually don't developed an allergy until after at least one exposure. This second time, within seconds of starting the IV, her face swelled severely and she immediately vomited and started crying. Thankfully, it was noticed right away and she was fine. She had to take benedryll for the next 24 hours but was otherwise fine. There is an alternative chemo but it is a series of injections 3 times a week. The hospital pharmacy didn't have any on hand so we are still waiting for her to get those.   The good news is that we are coming up to the 6 week mark of being on the main antibiotic. On Friday she will be having a repeat CT scan of her lungs and if it looks good we might be taking her home on Monday. Fingers crossed!

Victoria has also recently changed her tune about being in the hospital. Since Saturday she has been asking to go home. I'm taking this as a good sign, one that she is feeling better and starting to feel the cabin fever of being in the hospital every night since November 28th. Perhaps these few passes out have also reminded her that there is still a whole world out there beyond the walls of CHEO.