Cancerversary

First off, for those of you who may still be wondering, Victoria came home about 2 weeks ago. Her counts eventually came up and we have just started her back on her chemotherapy, at half of the dose. Next week, she goes for blood work and we will find out how her body is responding to treatment. Her bone marrow biopsy results were fine, putting our relapse fears to rest. She just has "tired" bone marrow, meaning it's taking it's time bouncing back from everything it's been through.

Her little body has been through so much. Today marks the one year anniversary of when this whole nightmare began, a date that is often referred to as a cancerversary. It's a weird thing. Most anniversaries have a happy connotation but this day last year was nothing but. But then again, November 13, 2014 is a different day. One year later and she is better than she was. Her body shows no signs of cancer, only the effects of chemotherapy treatment. Her hair is growing back, her many scars don't stand out quite as much. She is happy and full of energy - as close as we are going to get to a normal almost 4 year old.

We have all been tested this past year. We are no longer in the dark about the beast that is childhood cancer. My facebook news feed is pretty much filed the with updates of the many children we know that are fighting, While so much more awareness is needed, I wish no one had to know what we know.

We have seen so much good in people as well. The amount of fundraising and support we have received over the year has been amazing. Recently, there have been some amazing events. There was a very successful motorcycle poker ride, "Victoria's ride" and spaghetti supper fundraiser for our family in Huntingdon, the Neon night walk for Childhood cancer in Kemptville (which raised over $52,000!!) and the Light the night walk in Montreal for the Leukemia and Lymphoma Society. Just this week a giant cheque was presented to the Children's Wish Foundation for Victoria's. The money was raised at an annual charity golf tournament that is held in memory of Brian Millar. We went to the same high school and he lost his life to cancer in 2010.

Thank you all for every note, wish, dollar, babysitting, dinner, blood donation, thought and prayer. Her journey is far from over. She will likely receive treatment for another 15 months but hopefully the hardest parts are over.

Back at CHEO playing the waiting game

If you've already realized that my lack of posting usually coincides with me being too busy with our family, leading a more or less "normal"  life, than this post would signify that something is up. In a world where I can't find time for all sorts of things I'd like to do, cancer can make our whole family, and then some, come to a complete stop. On Friday, we enjoyed a nice meal with the kids, two Aunties and one very cute little cousin. We stayed up later than we should have, and then, just over an hour after we had shut our eyes, little Ms. Victoria walks to my bedside complaining about her bobo. I picked her up and instantly knew she had a fever. That's when normal life stops and cancer life takes over. We immediately go through the drill of temperature checks, getting dressed, packing bags, paging oncologists, packing food and making sure we have everything. The whole house wakes up. It doesn't matter that it's 2 am. Sometimes you go in, have blood work done and you are well enough to leave. We knew that this time there was no chance that the emerg. doctor would send her back home.

For the past 4 weeks Victoria has been neutropenic. Her immune system has been somewhere between 0.0-0.2. There is no obvious reason for this. Because of her low counts, most of her chemo has been on hold for this whole time. She missed out on traveling to see some family for Thanksgiving, she missed the start of her music classes and she could not  participate in the Light the Night walk our families fund-raised for, in honour of her. She has required another transfusion. As per the protocol, after 4 weeks they had to do a bone marrow aspiration to get a better idea of what's going on. This just took place on Thursday. Jeff and I spent Thursday with knots in our stomachs and worry on our minds. I think I spent half of the day holding my breath. The preliminary results we were given that day were reassuring. From what they could immediately tell, there was nothing alarming going on. The oncologist said it looks like she has "tired" bone marrow - it's not producing much and needs more time to recover from the effects of the chemotherapy. The bone marrow sample is undergoing further analysis, some at CHEO and some at the Ottawa General. We should have the results later this week. 

Despite how bad Victoria looks on paper, she is otherwise fine. We were shocked one month ago when we first heard how low her neutrophils were and that she needed a transfusion. She has amazing energy and a fantastic appetite. You should see her play, fight and roll all over the floor with Jake. Her hair is really growing in and she looks great. Even if it can be very misleading, seeing her like this helps us to not worry.

Back to early Saturday morning: After spending a few hours waiting around in emergency, she was admitted due to her fever, non-existent neutrophils and a couple of very red spots on her legs/bum. In a strange deja vu, exactly 11 months to the day, we were admitted onto a non-oncology wing and discussions about her spots ensued. Last year, they questioned whether or not her spots were chicken pox and they kept us on that dreary wing for 7 days while she was frequently biopsied in hopes of, unsuccessfully, fully figuring out what was going on. This time, they swabbed her sores, the infectious disease doctor decided that it did not look like chicken pox and then they transferred us to our home away from home, 4 North.  

It seems her sores are from a bacterial infection. She had already been started on antibiotics when we arrived and they don't appear to be getting any worse. Her temperature has been normal since early Saturday. For now, we just have to wait. We are waiting for those bone marrow tests. We will probably have to been in the hospital until her counts go up or until she completes 10 days of antibiotics. Her last admission was in August and we had to wait it out until the 10 days. We will play Lego, make puzzles, watch a lot of cartoons and make way too many Halloween crafts. 

September

September 2014. It seems this summer has flown by. Normally, the passing of time is not something I look forward to but in a life where we are happy to scratch months off of the calendar, in order to bring us closer to the end of treatments, but also trying to learn to live in the moment and not take any of the time we have together for granted, the passing of time is a welcomed event. 

The start of this new month, however, fills me with sadness and anger. Tomorrow was supposed to be Victoria's first day of school. She would have been the youngest in her Junior kindergarten class but she wont be there. She has started her maintenance phase, but by the time her meds are well sorted out, it will be prime cold and flu season. Not a good time to start reintegrating into social settings, especailly in JK. The hope is that she will join her class in the spring. Have a chance to learn the routine, make some friends and figure out the rules before Senior kindergarten next fall. She is only just a bit older than 3 and a half years old so it's not that big of a deal. What upsets me is that this is really the first time, since her diagnosis, that she is not doing what she would be doing if everything was "normal". There are lots of things about her life that are not typical for a 3 year old, but the first day of school is a pretty big deal. Worse yet, she is missing out on something she knew about, something she wants to do. Instead, when we drove past her school yesterday and she asked about going, I had to tell her that she has to wait until after the snow melts and when she is a bit better. To which she replied that she was "all better now" :)

I am happy to report that Victoria is a couple of weeks into the last phase, maintenance. This phase just keeps repeating itself over and over again until roughly Feb 2016. We had some initial difficulties trying to get her to take all of the new medications but things have sorted themselves out. The best news of all is that she no longer has to take an injection form of her blood thinner. Yay for no more needles!!!!

We have been taking her into CHEO regularly for blood work but that's been about it. Her treatments now consist of nightly chemo and blood thinners, steroids for a week each month, chemo at CHEO once a month and 2 lumbar punctures every 3 months. Her counts have been great, too good in fact. If they are still as high next time, they will likely increase her chemo. It's all about finding the right dose of chemo to keep things in check. For now though, we are making the most of her immune system being so strong. We went to the park together, the pharmacy, the grocery store and Canadian tire, all the normal stuff she has been deprived of over the last 9 months. She had a blast just being out in public.

Last week, the whole family was fortunate enough to spend 4 nights at Camp Trillium. Camp Trillium is a camp for kids with cancer. In the typical "can't plan or count on anything" childhood cancer lifestyle, we almost didn't make it. The morning of, we received a phone call from a CHEO emerg doctor informing us that some of her previous blood work/cultures showed that her port a cath may have been infected. It meant that we had to drive back into Ottawa to repeat the blood tests. She was otherwise fine and fever free so they did clear us for camp. We were 10 minutes late arriving at the boat (but they waited for us!) and I had to spend the next 48 checking my phone, but we were happy we made it and she was just fine. Unfortunately, 2 other families we know were not so lucky. They also ended up at the hospital that day and were not able to go. We had a wonderful time meeting other families who are either going through similar situations or who have finished treatment. Each of the children were matched up with a counselor, their "special friend", who spent the whole day entertaining them on the island. This was great because it meant that the parents got a bit of downtime too. We enjoyed canoeing, kayaking, sailing, a trip to the Sandbank sand dunes and more. It's a magical island filled with wonderful people. No one wanted to leave and we hope to return next year.

September is also Childhood Cancer Awareness month. The ribbon colour for childhood cancer is gold. Until our own personal experience with cancer, I never new about any of this. I know I'm not the only one. There are many activities going on including a Neon Night fun run benefiting Childhood Cancer research and and awareness event at Parliament Hill that we plan on attending.

Beautiful view of West Lake from the top of the sand dune

Waiting at the dock with their special friends

Campfire with a lake view 

Playing dress-up

Back home

Hi Everyone,

Victoria's has been home since Tuesday :)
We were so happy to get her home and continue on with our busy life, that I didn't feel like writing more than a Facebook status to announce her homecoming. We haven't had to do it often, but it's amazing how we have adjusted to putting our life on hold. Bags get packed, Jake gets shipped off, meals for a week and coffee K-cups in excess come along too. Once we get all settled in on 4 North at CHEO it's like we never left. Our home away from home. Every plan gets put on hold. And then, we come home, do laundry and pick up where we left off.
Victoria is doing well. She is just as happy and active as ever. We had a great weekend at home all together. We enjoyed the beautiful weather and Victoria was happy to swim and play in the backyard with the hose -just like a normal 3 year old. It was nice to have a 5 day break from the hospital. That is a really long time in her world.
Tomorrow, she returns for blood work. We are again waiting for her counts to rise again. When they are high enough she will begin maintenance treatments.

We did get to take our lunch outside for the picnic I had promised her

Stuck at zero

So, it's Saturday night and Victoria is still at CHEO. I'ts been one week since she was admitted for febrile neutropenia. This means that she had a fever when her immune system was very low. In Victoria's case, her neutrophils were 0.0 - yup that's as low as they can go! She was put on a course of antibiotics right away since her body cannot fight off whatever was causing the fever. The good news is her fever came right down (not like the last time, back in November, that lead to a 2 month stay and trials of endless medications). All we had to do next was wait for her neutrophil counts to start climbing. Once they start going up, then the hope is that her body can start fighting off things on it's own. Well, here we are stuck at zero one week later. Every morning we have been anxiously awaiting her lab reports only to be handed a sheet that says 0.0. Some of her other white blood cells have very slowing been climbing up by 0.1 each day. Her platelets are increasing and her red bloods cells are holding since the last transfusions. Her bone marrow is working. It's making "stuff", just not as fast as we would like.
If you could see her you would see that she is climbing the furniture, running the halls so quickly that we sometimes don't know where she is hiding (the nurses are being well entertained), eating so many cheese strings, yogurts and bowls of oatmeal that it's hard to believe she only weighs 13 kg and spending her days doing puzzles and endless crafts. She is sleeping well and she is not in any type of pain. We are not worried. It just sucks to be stuck here. She is having a lot of fun but she still wants to go home. She misses Jake :(
If by the end of Tuesday she is still stuck at 0.0, she will be allowed to go home. She will have had 10 days of antibiotics and if her fever doesn't return she's good to go.
Fingers crossed that tomorrow's the day!

Her beautiful new seal skin headband from another mother at the hospital

Refusing to remove her mask (even though she is allowed to outside) and not letting me adjust it so that she can actually see!

Can we eat out here tomorrow Mama?

Update

Hi everyone,

Just wanted to provide you with an update on Victoria. All in all, things have been going quite well. We have been enjoying the summer and even though we aren't able to do any traveling and have had to limit our visitors, the summer still seems to be flying by. Victoria is almost done the last phase in her treatment before she starts her maintenance therapy. She has been tolerating the treatments well up until now, however, the intensity of the chemo is really starting to wear her down. Her immune system has been very suppressed, she has been more tired and nauseous and she has started to require platelet and red blood cell transfusions again. Unfortunately, today she developed a fever and had to be admitted into the hospital. When they checked her blood work today, her neutrophils came back at 0.0 - meaning she pretty much has no immune system or any way of fighting off an infection. She was put on antibiotics and will likely have to stay in for at least a few days. 

We are hoping things will get a little easier soon. She has one more chemotherapy needle to do on Monday and then this phase wraps up. We are looking forwards the maintenance phase. She will still have chemotherapy, just not as much and she should have less frequent trips to the hospital. We are also excited because we will probably be able to take her off of her blood thinner injections. She will still need oral blood thinners but that's not a problem. She is a pro at taking any oral medications. Two less needles a day are going to make for one very happy little girl. 

For those of you who didn't get to see the telethon and hadn't yet discovered the link to our story here it is. This is the 5 minute video they filmed to tell our story. We haven't yet acquired (or even seen) our live interview - the one where Jake decided to re-arrange the set and Tori just wanted to tell the world that I actually had makeup on...funny kids!

https://www.youtube.com/watch?v=lLwki9Ld8rs&list=UUQdmVr7jeIWxsQLJ97ZauyQ

Hanging out in Jake's bed

Celebrating Jake's 2nd birthday

Get your Kleenex out!

If I were a journalist or reporter I might be fired. I seems like I'm always writing old news. Thankfully, I'm not and I know you will all forgive me :)
I have a few things to share with you, but before I get to those I wanted to let everyone know about the CHEO telethon. The telethon starts at 7 pm tonight and I believe it runs for 24 hours. Tomorrow, our family is set to appear on TV at about 5:40pm. They will play a short video, telling Victoria's story, followed by our live update. Hopefully, I can hold it together and you won't tune in to find be crying my eyes out (lets hope they use water-proof mascara!)
Though this won't be Victoria's TV debut. Some of you may have already spotted her on CHEO's latest commercial. If you don't know her well, she's the younger girl, 9 seconds in, sitting with one of her favorite nurses. Her speech isn't that great but she is saying "I love CHEO" (we couldn't get her to say "I need CHEO").
Here is the link to the commercial: https://www.youtube.com/watch?v=RxnU5j6gqF4

I hope that this is just the beginning of our family doing our part in helping out. There is now a list of various causes and charities near and dear to our hearts. We certainly have our work cut out for us in repaying all of the help we have received to date.
Many of you have already been doing an amazing job of fundraising and we are so thankful for all of your hard work. More on that to come.