Croup, last day of school, and more waiting

We almost made it two weeks without a visit to CHEO. We were so close, but on Wednesday in the very early morning, Phoebe woke up with croup. She also had a fever, so off we went, our bags packed, to the emergency department. It was our shortest visit to CHEO ever and we were in and out in just over 3 hours. Phoebe got a mask to help her breathing, a dose of steroids and Tylenol, she was poked, her blood work was done which showed perfectly normal counts, and off we went. I left CHEO with a smile on my face and a bounce in my step. Even Phoebe was excited. "We don't have to sleepover?" she asked. And then she said excitedly, "we get to go home!" as we left the hospital and headed to the car. It would be my first visit to the hospital with Phoebe for something "normal". She was not hooked up to a ton of machines and admitted, I wasn't questioned by multiple doctors about her and my history and her disease, instead we saw one doctor, who was not an oncologist, and we got to sleep in our own beds.

It is the little things.

Phoebe was back at CHEO today for her monthly chemo and a visit with her doctor. Her blood work continues to look good and normal. She is scheduled for the repeat/redo bone marrow aspiration on Tuesday and we are all hoping that her cough will be completely cleared up or she may not be able to have the procedure as it requires sedation and going under sedation with a swollen airway, like that caused by croup, is very dangerous. I mentioned to Phoebe's doctor that to wait any longer for this test and results will turn me into a stressed out mess - or even more so than I already am. This waiting and this cancer is wearing me down. She commented that I would not be the only one stressed. The stress, it seems, is shared by all of Phoebe's doctor friends. We need these results soon and we need them to be good and free of Leukemia. The idea of monitoring Phoebe closely with these tests only works if we get results. And not far from anyone's mind is the monster that is Infant Leukemia.

In other, very big news, Mae had her last day of school yesterday. Her first year of school, a year that has been filled with many ups and downs, has flown by. We said good bye to her wonderful Kindergarten teachers and I had a hard time keeping my tears at bay. We were blessed this year, with an army of support from Manor Park School, and to know that Mae was going to school in a place that not only understood what she was going through, but supported her and encouraged her to share Phoebe's story, truly meant the world to us.

Phoebe is very happy to have her sister home and we are excited and hopeful for a fun-filled and uneventful (of the hospital variety) summer.

Swim Phoebe Swim

The wait is over and yet we have no results. The sample that was taken at CHEO and sent to St.Jude (that was also possibly diluted) was not enough to run the RT-PCR test (the minimal residual disease test) and so next week we will be testing again.

Next Tuesday, Phoebe will have another bone marrow aspiration and the sample (which will hopefully be good and plentiful), will be sent to St.Jude and we will hopefully know soon what the MRD results are. These results are especially important as they are the most sensitive and are looking for leukemia at a very low level.

For now we will hold on to the one piece of good news from this bone marrow test. That is the perfect chimerism, and hope that this delay and mix up will not cause any problems. We will hope that when we finally get all of the results, they will be negative.

In other news, and in many ways this is the most important news - Phoebe went swimming yesterday!

Last night as her Daddy put her to bed, I listened as she told and retold the events of her exciting day.

It went something like this. In the cutest voice ever.

"Daddy, I went swimming today. In Granny, Grampa's pool. I wore my puddle jumper. I swam all...by...myself! Daddy ... I also jumped into the pool. All by myself, Daddy. Mae went swimming too. Mae wore her puddle jumper too. Daddy, you swam under the water. I kicked my legs. Like this ... (sound of wee legs kicking the mattress). Like this Daddy (more kicking)."

And on and on she went.

If I could bottle up the joy that Phoebe expressed yesterday as she got into that pool, or the wonderful and joyful energy she created for the people around her. If I could bottle it and share it, I think I could make the world a better place.

It was magic.

Jump Phoebe Jump

We are still waiting for MRD results of Phoebe's most recent bone marrow aspiration, but so far the news - although complicated which I will explain, is good.

The chimerism results are in, and Phoebe continues to have 100% donor 2 cells in her bone marrow.

What makes this complicated is that the sample of bone marrow that was taken at CHEO last week was diluted with blood. They still sent it to St.Jude and St.Jude still ran the tests, but their lab is unable to determine whether or not it is purely bone marrow. So, although we will still wait for the final results to come in, and this initial news is good, the test will probably have to repeated. Sigh ...

All test results, hospital visits, and cancer treatment aside, Phoebe is amazing. She is growing - a whole 3 cm in the past few weeks and she appears to learn a new word every day. And she has learned to jump. A bit later than most, but she makes up for it by jumping all day long. If you even so much as mention jump in her presence, she will stop what she is doing and jump for you. She has now caught up, if not exceeded her milestones, and we are very proud of her.

This Saturday in Ottawa there is a great event -"Clutter and Cupcakes". It is as good as it sounds, and all proceeds go to Candlelighters and CHEO. There will also be a lemonade stand for Miss Phoebe. Special thanks to the organizers, the wonderful Gabriella's Groupies, for thinking of our family. For more information see the photograph below.

Steroids

Phoebe's latest masterpiece. It is a picture of the four of us dancing :)


We are finally finished a five day course of steroids and I can't wait to get my baby back. I don't know if I have mentioned this yet, how much I dislike steroids, but I do. I hate them. They are used often in leukemia treatment as they kill white blood cells and although they have proven effective for us in the past, they are by no means a cure for this awful disease.

These past five days have transformed Phoebe into a very different child. No longer the independent sweet and feisty girl, she is clingy, weepy, and desperate to be held all day long. She would be happy to only eat olives and demands them for breakfast, lunch, and dinner. To say no to her, as that would be logical and is maybe what some of you are thinking, would cause her to cry inconsolably. She has little control over her own behavior and once the steroids run their course she is back to herself, so instead we just ride it out and make frequent trips to Farm Boy.

When not eating olives, she uncharacteristically naps and is often sleepy. And when not napping, she is running around the house, arms flailing and hitting, shouting that Mae needs a time out. "Timeout Mae! Timeout, time-out, timeout!!!". This happens at least ten times a day, but as soon as we drop Mae off at school, Phoebe asks to pick her up again. And then she asks all day long. She is depressed. Sad. Lonely. And this is all thanks to steroids.

I don't know how we ever did long stretches of steroids. Twenty eight days of high dose steroids. How in the world did we do this? But then I can ask that question of all of this.

We just did and we do and although I have had moments over the past five days where I have wanted to lock myself in the bathroom just to get a bit of peace, I am still grateful. I often think of what one very wise mother and friend once said after saying goodbye to her precious baby. She said, be thankful for even the most difficult days because if they are over, you will miss them and long for them too.

And so we will welcome our angry, clingy, insatiably hungry, moody, olive eating, aggressive yet beautifully cuddly toddler for five or more days each month and we will keep holding her tight.

Some good news (other than the news of the end of steroids) is that we have now graduated to biweekly blood draws, or we will graduate if we can make it two weeks without any thing happening. We are due at Cheo again on the 14th and will also be getting another bone marrow aspiration sometime around then too. The bone marrow samples will once again be send off to St.Jude for testing.

Please keep Phoebe in your prayers, this is another very important test.

We are also amazed and overwhelmed (in the best way) at the support our community continues to give us. There are two fundraising events being held in Ottawa, this weekend and next. Funds raised at these events will allow us to pursue further treatment away from home, if and when that time comes, while also helping to manage medical expenses.

Thank-you also to the runners who ran in events on Ottawa's race weekend in honour of Phoebe! To Alyson who ran a personal best in the half marathon and to the amazing Manor Park kids who ran the 2k with their families and teacher - you have all warmed our hearts! Thank-you!