Merry Christmas

Merry Christmas Everyone!

It may have been because my expectations were kind of low, but despite not being able to travel back home for Christmas, we had a good day. We were fortunate that this year, for the first time, the Ronald McDonald House in Ottawa was open over the holidays. Apparently, they usually kick everyone out on December 23rd. They close for the week and clean and renovate the house. Staying at the house allowed the four of us to spend time together for the first time since Victoria was home back in November. Victoria has been feeling well and was given 4 short passes to come over to the house. She had to go back to the hospital for her IV antibiotics every four hours. She was really looking forward to seeing Jake. When Jeff showed up with Jake on Christmas Eve she was thrilled. She grabbed his hand and practically ran to the playroom with me close behind chasing her with her IV pole! From that moment she also became very chatty and hasn't stopped talking since.

The Ronald McDonald house is very nice. It is very comfortable and was beautifully decorated for the holidays. There are 14 guest rooms, a very large kitchen for everyone to share, a few living rooms and sitting areas, a dinning area, playroom and library. Upstairs there is a game room and exercise facilities which are under renovation. The kids had a fun time. Victoria was so happy to be with everyone but she made it very clear that she did not want to sleep there ( she wasn't even allowed ). She said she wanted to go sleep in her bed at her hospital. When I said I was bringing Jake home, she said she did not want to go home and kept pointing to her port! Either she is really starting to like the place or understands that she needs to stay at the hospital.

CHEO did a lot of nice things for the holiday. They brought in a decorated and lite tree for her room, she received gifts from everyone she saw and painted wooden ornaments. Because she left the hospital fairly early on Christmas morning, she missed Santa's visit. When she returned that afternoon, there was a picture of Santa standing beside her name on the door as proof he had been here, and a CHEO teddy bear wearing a little striped hospital gown.

On Christmas morning, we ate a relaxing breakfast and the kids spent some time playing in the playroom. It was nice because they didn't really remember what goes on on Christmas morning so for last time, until they will be much older, we had a chance to have a coffee before the madness began. Then the kids opened their gifts in our room at the house. Auntie Lisa and Uncle Mitchell drove down to spend some time with us on Christmas day. Together, we all got to enjoy a yummy lunch and hang out. Tina and Randy also paid us a nice visit. The kids opened more gifts from everyone and we basically just hung out until Tori had to head back to the hospital. She was granted one more pass that evening. She came back to enjoy a big turkey dinner that the volunteers had prepared for all of the guests of the house.

The Christmas tree in her room

Jake thinks Victoria's suitcase is his so he pulled it for her :)

Jake fighting nap time

Victoria received a giant version of our original sock monkey, Victor. For now we just call him Big Victor. He is awesome!

Big Victor gets a piggyback ride

Selfie with Auntie Lisa and Big Victor

Victoria's hair was really getting sparse. We finally gave her a big chop. Now she has hair just like Daddy and she doesn't mind one bit. 

Jake enjoying some time in our room at the Ronald McDonald house

Enjoying part of the play area

Waiting for their gifts :)

New Port is in

Victoria had another port inserted on Friday and the surgery went well. To avoid putting her under two days in a row, they combined it with the chemo lumbar puncture she was supposed to have on Thursday. She has bounced back much quicker than the last time. She does complain of some neck pain but at least she's moving it today. It is, once again, nice for her to have her hands free. Also, because her arms aren't tied to the IV pole, she can now put it through a sleeve and wear her own tops. Thankfully, she has not had any fevers either. Her  "consolidation" phase of her treatment has started which means new chemotherapies and medications. So far she is doing okay. She had some nausea and vomiting today but really this week was the first time since starting treatment. It is expected that her blood counts will go down soon but for now she's good. Her hair is really starting to fall out now. She's lost most of what was in the front and also at the very back. She doesn't seem to mind in the least. It comes out so easily that she quite often, accidentally, pulls out a handful. Her reaction is to put it on one of her stuffed animal's heads to give them more hair :)
We've had a pretty laid back weekend, spent mainly watching movies and resting. Today, we did some laps of the ward and visited the playroom twice.
As for Christmas, we are staying close by. We have a room at the Ronald McDonald house, just across the parking lot, booked as of the 24th. It will be nice to avoid the drive to and from home, especially the way the weather has been. This way, we can also have Jake around for the holiday. There is no way he could spend a day at the hospital. After 5 minutes he takes to pushing buttons, pulling on lines, exploring the trash and trying to lick things...This way, one of us can visit with him for sort stays and head back over to the house when we've had enough.

Cheese in one hand and bacon in the other, what more could she want for breakfast?

You all make me cry!

I haven't cried about Victoria or our family's situation in a while. I've gotten over that for now and figured out how to keep going. That's not to say that I'm not still going through Kleenex like I've got stock in the company. What makes me cry now, on an almost daily occurrence, is how incredibly generous and kind our family, friends, coworkers and even people I barely know or who I've only known for a short time have been. Even just everyone's thoughtful messages are helping us to get through this. Monkey's continue to be made by people who could give Santa's elves a run for their money, food fills our freezer, gas and expenses get paid for with more than generous donations, and Jake has never been so entertained with the wonderful family members who have become his second parents. People wonder how I'm managing to get back into work or how we are coping as well as we are? It's because you are all helping us. We are so thankful!

This week we received a special gift for the kids. My old school, Hemmingford Elementary, sent us two huge stockings for the kids. Actually, it was two huge beautifully quilted stockings, each with a smaller stocking attached. I'm not sure if we were supposed to wait until Christmas but I was too excited to see what they contained. I used the unwrapping of the gifts as a distraction for Victoria one morning, when she wasn't allowed to eat, while waiting for a procedure. The stocking will be used for many more Christmases, Victoria has already slept with her quit and the gifts are all perfect for them. A BIG thank you to everyone involved!!!

Today we met with Tori's oncologist. She had her test results and the good news is that her minimal residual disease testing came back negative!!!!!! This means that they can not detect any leukemia in her bone marrow and she is actually in remission :-)  That was the goal of her first month of treatment. The following 23 months of chemo are to keep it this way, crazy eh? Her next phase of chemo starts tomorrow.  We have been given the breakdown of all the phases that remain and what the treatment is for each of them.
She hasn't had a fever in 2 days and she has been cleared for surgery to have her port reinserted. This should happen by Monday at the latest. The bad news is that she needs to be on her IV antibiotics for 6 weeks after her blood cultures started coming back negative. That takes us to about January 14th. She needs to be on the IV and with the new chemo her immune system will be knocked back down again so it's the best place for her. At least now we can plan. It's hard when you have no clue as to how long you will be there for. 

 Victoria's monkey hat made by a patient at the Kemptville clinic. Despite her facial expression, she likes it a lot but also think's it's Minnie Mouse's hat too!

These stockings are huge, almost the width of our table.

                                         

The Sens came to CHEO last week. Victoria was in isolation so she could only see them through the glass. Jeff got a picture and some signed cards. He looks pretty happy, imagine if it had been the Habs!

The mother of a little boy, who has been fighting the same kind of leukemia as Victoria, makes hats for children with cancer. Today, we received a beautiful red Christmas hat. Victoria loves it and wore it around the hospital this afternoon.

Our sweet girl is back :)

Victoria has really been acting more and more like her old self. It's so nice to see her laugh and smile again. Granny, Poppa and Auntie Melissa came for a visit and the timing was great. It's nice when she doesn't tell people to go home...
She is still confined to her isolation room but she's started getting out of her bed again. She has a little chair that the Child Life specialist brought her and also likes to hang out on our pull out bed too. Actually, she would prefer to sleep on my bed and has told me to sleep in her's. Considering my bed is a third of the size of her's, it makes sense but I'm sure it would be frowned upon ;)

Thursday was a big day. She had a repeat bone marrow biopsy and lumbar puncture done. These were to see how well she has responded to her first month of treatment. From what the doctors were able to see, things look good. The specimens have now been sent off to John Hopkins for further evaluation. Early next week, we will meet with her oncologist for the results and to discuss the next phase of treatment. Fingers crossed for those results!

After waiting all day on Saturday (and not being allowed to eat in the meantime), and then being bumped by emergency surgeries, she finally had a CT of her chest done yesterday. Her chest x-ray had shown "something" but the doctors weren't sure what it was. Yesterday they concluded that it's likely all a reaction to her staph infection. She's already on a that medication so that may be why she appears to be improving. Without the imaging, you'd never know that was what was wrong. Her only symptom is a fever. Her oxygen is perfect and lungs are clear. She still gets about 1 or 2 fevers a day but that's a big improvement from before.

 

Feeling a bit better

Over the past few days Victoria has definitely been improving. She has been eating a little bit more, sleeping a bit more and yelling at the nurses and us a lot more ;) She has had fewer fevers. The definite cause of these fevers has yet to be determined. They are still running many tests and changing her medications -something seems to be working though. Today she even walked to the fridge to pick out what she wanted when Jeff couldn't understand her.



Enjoying her new Christmas blanket from Granny and Poppa

 

 

A big thank you to Auntie Johanna, her co-workers and employer Apollo Microwaves for their kind thoughts and generous donation to help out our family.

 

Sock monkey madness has continued and is spread back home. It was such a fantastic idea that the monkey makers can hardly keep up with the demand. People who have never sewn are discovering their new found talents.

Auntie Lisa multitasks while babysitting Jake



Her little elf



 

 

The Duheme's get in on the fun

 

Another sewing baby