The one and only Phoebe Rose

Yesterday we had our meeting with Phoebe’s transplant doctor from The Hospital for Sick Children in Toronto. The meeting went well, but I was completely unprepared for all of the statistics that we heard. I think I have blocked out a lot of the information that we were told in the beginning, and I think too that our doctors here were very careful to tell us as little as possible about the statistics related to Phoebe’s cancer.  In the beginning, we spent a lot of time reading and researching and then decided that reading countless statistics and studies was pointless.  If we have learned anything since we have been at CHEO it is that Phoebe is a wonderfully unique individual and because this is true, the statistics might as well read one hundred percent chance for a cure.  There is only one Phoebe and how she responds to treatment or anything else in life, will be different from anyone else. 

Looking at Phoebe it is hard to believe that she is really this sick, that there is something so terrible and dangerous inside of her.  As I write this Phoebe is sleeping peacefully, twisted into her favourite position, perfectly plump just like any other 8 month old baby.  Yesterday, when our transplant doctor was listing off all of the possible complications from the two 2 different types of pre-transplant conditioning methods: radiation plus high dose chemotherapy, or high dose chemotherapy, I remember thinking "is this actually happening?".  Unfortunately it is and he was telling us the two types of conditioning regimens because he was asking us to choose.  A difficult decision, but wonderful that we are being included in decisions about Phoebe's future. We chose the high dose chemotherapy instead of radiation, which he explained has fewer long term side effects.   

Our wonderful donor, wherever he or she may be is prepared to donate on May 12^th, so that will most likely be the date of Phoebe’s transplant.  We will go to Toronto about 10 days before that in order to prepare Phoebe for the transplant.  Her “pre transplant conditioning” is six days of high dose chemotherapy.  She will receive 3 different types of chemo each about 3 times stronger than the chemo she has already had. The doctor explained that with a transplant, the chemo can be stronger because the purpose is to wipe out the bone marrow, not allow it to recover.  He said they are limited only by the organs, the chemo cannot be so strong as to damage the organs. Following the chemotherapy, Phoebe’s body will be rescued by the donor’s stem cells. And then we will wait. Wait for her new bone marrow to engraft, and to start making new cells.  Throughout this process we have done a lot of waiting and we have developed an incredible amount of patience.  Although we have waited countless times for Phoebe’s bone marrow to recover  I have a feeling that the waiting that we will be doing in Toronto will be much more difficult.  This time we will be waiting for our donor’s marrow to start making new cells.  For Phoebe’s little body to recognize it, accept it, and allow it to grow and flourish.

www.onematch.ca 

Home

We had a wonderfully normal weekend.  Phoebe was given day passes on Friday, Saturday, and Sunday so on those days she arrived home in the morning, stayed the entire day, we had supper as a family, and then she returned to the hospital at 7.  We had a tiny glimpse of what a normal life with two children looks like.  It was busy, loud, exciting, a bit chaotic at times, and very fun.  We spent a lot of the weekend outside, we were blessed with great weather and we took Mae and Phoebe for long walks to see all that there is to see at this time of year.  We watched ducks and geese fight over bits of bread and Phoebe watched Mae chase after seagulls.  She saw her cousins riding their bikes up and down the street and when we were at home we danced and sang and played and Phoebe sat in her highchair with us while we had dinner.  She ate.  She tried pureed sweet potatoes and chicken and for the first time she put the spoon in her mouth and seemed to understand what eating is all about.  
Then each night after dinner, I strapped Phoebe into the car seat and off she went with her daddy, back to her room to sleep and to be fed through her feeding tube, the little bit that she missed throughout the day. 
So much fun was had, that it was hard to say goodbye at seven o'clock.  Hard to go back to the reality of hospital life. To chemo and feeding tubes, and a room with a view of the roof rather than a backyard.  I learned this weekend that as hard as we try to recreate the comforts of home in Phoebe's little hospital room, nothing compares to home.  Phoebe has been in the hospital longer than she lived at home and she has yet to sleep in her crib.  The more time we spend at CHEO, the more home starts to look like a scary place, full of things that might make Phoebe sick.  We worried that Phoebe would be allergic to the cat, or dust, or that the toys she played with might have come in to contact with someone with a cold or the flu.  This weekend we were extremely cautious, we washed all of the toys, and the cat spent the weekend outside, and all of the wonderful things that Phoebe saw and heard while at home made up for all of our worries.
Today at 5 o'clock Phoebe received her first of four treatments of chemo.  She will have chemo until Wednesday and then we will wait for her counts to recover and for any side effects of the treatment to pass.  Although it is difficult to be away from home, we know that right now this is what Phoebe needs.  And the reality is that we will have to go even further from home, to bring home to within our reach.

Here comes the sun ...

Today was another wonderful day.  Jon, Mae, Phoebe and I spent some time in the sunshine at the park.  Mae was very excited to show her little sister all of the fun and exciting things that there are to do at the park.  Phoebe went down the slide for the first time, with me holding her, and she loved it.  There were lots of smiles, laughter and happy shouts of "come on everybody" from Mae as she ran from one end of the park to the other. So wonderful to spend some time together as a family outside of the hospital room.
After the park, and for the second night in a row, we all had dinner together in Phoebe's little room.  Eating on our laps, Jon and I sharing in the parenting of Mae who sometimes decides that her dinner is "yucky" even though it is something that she loved the day before. Phoebe watched us eating very closely, she is not sure about baby food or drinking anything other than breast milk, so Mae showed her how to eat a cookie. "Look Phoebe (crunch, crunch), you do it like this". I'm sure that with some more daily guidance from her sister, Phoebe will catch on in no time.
Phoebe's neutrophil counts are up today and if they continue to stay up, she will start her next 2 day treatment of chemo on Monday.  We are going to make the most of our chemo free days and get outside to enjoy the sun, fresh air and good company as much as we can.

Almost there

The countdown is on ... Phoebe has completed 5 days of chemo for this round, and now we wait for her counts to recover.  Once they are high enough, she will receive 4 treatments of high dose chemotherapy, more time to recover and then we will head to Toronto for her transplant.  As we come to the end of this chapter, we are aware that we are not on safe ground yet, but we are almost there.

In a few weeks we will have a teleconference with the transplant doctors from The Hospital for Sick Children in Toronto.  We have been told to arrive armed with all of our questions and with an open mind.  Our oncologist said that they will present many worst case scenarios as they have to give us all of the possible complications and there are many.  She said that we may start to wonder why in the world we are doing this, and then she said, but we are going for the cure.  The cure.  What a wonderful thing. 

Phoebe is amazing.  She has had some nausea due to the 5 days of chemotherapy she just received, but she is smiling, laughing and playing.  Trying her hardest to be a normal baby despite the abnormal atmosphere where she has been spending the better part of her first year.  Her first little tooth poked through yesterday, and against all odds she has met the majority of her milestones so far.  Unlike a "normal" baby, Phoebe has some days that she spends mostly in bed, she has been outside twice in five months, and has never seen things that most of us take for granted.  When Mae was Phoebe's age, we would take her outside everyday and show her squirrels, dogs, the buds on the trees or ducks swimming in the river. I would excitedly point out trains and trucks, and she would laugh and catch her breath when she felt a strong gust of wind on her face.  We would stand on the porch and watch the sky change before a big storm, and she would squeal in delight at the sound of thunder and the sight of heavy drops of rain.  Phoebe has yet to see a squirrel, or a dog, and she has never heard the sound of thunder.  Instead she sees countless smiling faces everyday; happy and excited to see her growing and smiling back.  She sees the strength and resilience of other children, and she listens and watches as they laugh and play.  Often hockey, in the hallway just outside her room.  She sees and hears many wonderful things, but we will happily have so much catching up to do once we finally get home.

Thank-you

Yesterday we attended a fundraiser, organized by our friends and family in Phoebe's honour. As we walked into the restaurant, we saw that the room was full and buzzing with excitement and the best and most positive energy I have ever felt filled the space.  So much love in one room that it was most definitely felt by little Phoebe at CHEO. This situation has made something that I have always known very clear, and that is that we are very lucky.  We are lucky in love and family, in friendship, and in community.  We are lucky to have people in our lives who care so much.  When we are having difficult days, we often think of all of you cheering Phoebe on and sending her love and prayers, or we read positive messages that you have written and things seem better. 

Today Jon and I sat together and opened cards that were left at the fundraiser, by those who attended but also by some of you who were unable to attend but graciously donated.  Reading many of your thoughts and prayers for us and Phoebe brought tears to my eyes.  One card in particular struck me.  On the envelope, written in beautiful cursive writing, was "Phoebe Rose" and inside the card was a simple but incredibly thoughtful sentiment.  "To Phoebe Rose, from Sarah. My allowance!"  So wonderful.  Sarah and other young people gave allowances, emptied their piggy banks, sold raffle tickets, and were active members of the auction, bidding on Raptor's tickets, gingerbread creations and beautiful hand-made crocheted hats to help us and Phoebe.  We can't wait to brighten up Phoebe's room with all of the beautiful cards and artwork made by her young friends. It truly was a magical day, and there are no words to express how grateful we are. 

When the doctors told us to expect to be in hospital for a year, it was really important to us to be by Phoebe's side every step of the way.  For us to do this and still give equal attention and care to Mae, we put our lives and work on hold.  As a stone mason, Jon's busy season is about to begin, but instead of diving into projects, he is helping to care for Phoebe and Mae.  The money raised will allow us to travel to Toronto as a family which will mean that throughout Phoebe's transplant preparation and procedure, one of us will always be holding her hand.  It also means that once Phoebe is able to have visitors, the first one, anxious and excited to see her baby sister, will be Mae. 

We expect to arrive in Toronto sometime in early May.  We have had some delays due to chemo related complications, but because the bone marrow donors have been found, we will leave CHEO as soon as Phoebe recovers from her last dose of chemotherapy.  We are nervous and scared, but also excited to close another chapter and begin what could possibly be the last leg of this journey.  Home now seems wonderfully within our reach. 

All of your thoughts, prayers, generosity, love and support mean the world to us.  Thank-you from the bottom of our hearts.

A great day

Today was a great day.  Jon spent the night with Phoebe and I arrived to see him and Phoebe cuddling, and little Phoebe laughing.  Phoebe's laugh is quite possibly the best sound in the world and we have missed it.  Following her last treatment of chemo, Phoebe stopped smiling and laughing for over a week.  It is so hard to go without seeing her smile, but just like everyone else, when she is sick and feeling unwell, smiling is probably the last thing she feels like doing. 
Phoebe has been working hard and is on her way to a full recovery from her infection.  Her belly is still slightly swollen and she is still on IV nutrition, but she has been fever free for 3 days and her neutropolys are on the rise.  Her next treatment of chemo is postponed until her counts and her infection recover, but everyday we get closer to that happening. 
Another reason today was great is that we learned that 3 "perfect" matches have been found for Phoebe.  It is up to the tranplant team to decide which match is the best one, but we are so grateful and happy to have options.  Two matches are from bone marrow donors, and one is a cord blood donation.  So wonderful.  Somewhere out there there are 2 people walking around who are identical in many ways to Phoebe.  All day long I have been thinking of these people and wondering who they are.  What they are doing for us and for Phoebe is life changing.  By choosing to become a bone marrow donor, they are giving Phoebe a chance to live a full and cancer free life.  There are no words to express how this makes me feel.  I am so incredibly grateful.
I recently registered to be a bone marrow donor on the national bone marrow registry. It truly is a life saving gift. Please visit onematch.ca for more information if becoming a bone marrow donor is something that interests you too. 


www.onematch.ca

One minute at a time ...

When Phoebe was diagnosed almost everyone that we spoke to said to take things one hour at a time, and if that proved to be too difficult, one minute at a time.  I remember thinking that I wanted to look as far ahead as possible because Phoebe's future is so bright.  I still believe that, but now I understand why we were told to take things slowly.  This road is long and full of curves and bumps and often as each hour passes, the situation changes and another obstacle has been discovered or overcome.
We have had a difficult week.  Phoebe has had terrible mouth sores and mucositis as a result of the high dose chemo and just when they appeared to be clearing up and when we felt like we could exhale and relax, we noticed that Phoebe's stomach was swollen.  The doctors ordered an x-ray and the results showed an infection in her gut. Now she is on five different types of antibiotics, IV nutrition and her stomach will be measured every 4 hours to monitor her progress. She can't have anything in her stomach until the infection clears up.
She is resting and working very hard to get better, but she hasn't been herself in a few days. It is so hard to go without seeing her smile and hearing her babble, but as each minute passes by, the antibiotics work their way in to Phoebe's system to fight the infection and Phoebe gets stronger.  Tomorrow is a new day.