Back on Treatement

After having a bit of a break from the hospital it seems like we can't get enough of the place this week!

On the weekend, Victoria had a fever so I had to take her into emerg on Saturday night. Of course, I had just poured myself a glass of wine when Jeff decided to take her temperature and the fun ended right there. Fortunately they don't make the oncology kids wait at all. We called ahead of time so they would be sure to have an isolation room ready. The last thing you want is someone without an immune system hanging out in the waiting area of an emergency department! Just 2 weeks ago, a child with Measeles ended up there (he had also been at our pediatrician's clinic a few days before I was there with Jake...) They took her blood and a urine sample right away. As it turned out, her white blood cell count was high enough that we could go home. Unfortunately, the resident forgot to take a sample of blood from her port-a-cath which is super important (now I know) so we had to take her back in on Sunday. Again, she skipped the line, they took the sample a plus a nose swab and off she went.

Since Victoria's counts we high enough, she was admitted for the next phase of her chemotherapy. This is what we have been waiting for. Yesterday was an early day. Jeff and Tori went to the hospital for 7:30am and by 10 she had been put under and had her lumbar puncture with chemo. She was given a room upstairs and a few more chemotherapies. One of the IV chemos runs for 24 hours. She will most likely be in until Friday but it all depends on how long it takes her body to recover from the 24 hour high dose methotrexate.

Starting this phase is significant because her treatments continues for 24 months past this point. The countdown is on!

The other exciting thing that happened yesterday relates to something I haven't yet mentioned on here. Some of the staff at the hospital submitted Victoria's name to be one of about 6 children chosen to be on CHEOs telethon in June!!! Now, I am not that thrilled about the fact that we will be on TV. I am happy to be part of something that can make a difference. A little while back, they filmed one of our first visits for day treatment. They also interviewed Jeff and I (I cried through most of it so I hope they cut me out...). Yesterday, they filmed some of Victoria's time in the hospital as well as her lumbar puncture. The telethon airs in June and our family will appear on live TV to give an update on her condition. We know Victoria can pull on the heartstrings of most people she meets -hopefully she can pull on their purse strings as well lol.

Jake just happened to have his one year follow up with a urologist at CHEO today so we got to go visit. It was nice for the kids to see each other. They ate snacks and watched Barney together, just like at home.

On Wednesdays they have pet therapy on the oncology ward. In the past, Victoria's immune system hasn't been good enough to go. Today, is was still okay as the chemo hasn't yet taken it's full effect. Both kids enjoyed meeting Boomer. He is a big dog so I think they were a little hesitant at first but he won them over with his sunglasses. He was such a friendly dog. He hopped up on the couch beside Victoria and laid his head in her lap. The dog is groomed each time before he comes to visit and  each person is required to clean their hands before they touch the dog. 

Waiting

Hey everyone,

I've titled this post "Waiting" because it's what we've all been doing. You have been patiently waiting for over a month for a post from me (sorry!) and we've been waiting for Victoria's treatment to continue.
Not much has been going on around here lately. We have settled into our new day to day life. Jeff take's Victoria to CHEO, usually 2-3 times per week, for treatments. Things have been going as planned and she continues to respond well to the treatments. At home, we have our regular routine of medications memorized. Victoria's last phase of treatment ended over a week ago. In order for her to begin then next one, her white blood cell count needs to come up a bit more. She was tested last week and it was too low. In a way I think we were a bit relieved. While we want her treatments to be over with as soon as possible, it was a nice break.  This past week was the first time since the beginning that Victoria had a week without chemo. Again yesterday, her counts were too low.
Tomorrow, she returns for more blood work. If her counts are high enough, she will be admitted to the hospital on Thursday. This next phase of treatment includes the only planned admissions into the hospital for treatments. She will have to stay for 3-4 days and this will repeat itself for 3 more times over the next 2 months. It includes some high dose chemo that needs to be given over 24 hrs as well as a lumbar puncture. After that, the next couple of years are all supposed to be outpatient treatment. That is unless she gets sick. Any fever still means an automatic admission at this point.

Victoria continues to amaze us. She has never once said she didn't want to go to the hospital. When she is there, she definitely does not enjoy the treatments. It's the playroom, the volunteers, the great nurses and the Barney DVDs that keep her very happy. I am sure that her positive personality and also her lack of knowledge of the seriousness of the situation help to keep our thoughts so positive as well. She does not think she is sick. She tells us she is all better. I'd like to think she knows more than we do :)

The oncology floor at CHEO was recently renovated. They put out a video to showcase the new ward. If you want to have a peek at what our home away from home looks like, take a look. It's a bit long and might make you shed a tear or two ;) Some of our new friends are in the video. There is also a little girl that walks by that, for a split second, had Jeff and I both wondering if it was Tori. It's not, just  in case any of you think the same.

http://youtu.be/LwfjMUiFfD4?a

I'll let you all know when she get admitted to start the next phase.
Love Jess