Counting down ...

In the world of transplants, we count down to day zero or transplant day and today is day - 4.  So far, Phoebe has completed the first of her high dose chemotherapies, Busulfan, and as I write this, she is receiving the second of three types of chemo, Etopiside.  The Etopiside runs through her IV in 12 separate syringes, each running over half an hour.  That's six hours of non-stop chemo.  Our nurse today was kept very busy, with the beeping syringe pump and checking Phoebe's vitals.  As usual it was non-stop action.  Phoebe is handling the chemo well, she is playing and laughing and smiling, but also making sure to tell the nurses when she doesn't like something. 
Today we opted to participate in "rounds".  Every Monday and Friday at Sick Kids, parents are invited to participate in discussions regarding their child's care.  We see a doctor everyday, but today doctors, nurses, dieticians, pharmacists, social workers, and anyone and everyone involved in Phoebe's care, convened in the hallway outside of her room.  They were waiting to talk about Phoebe and because she was wide awake when it was our turn, she also went out into the hall to chat with her team.  Phoebe was smiling and laughing and making friends while we talked about her cancer, how much she is eating, or not eating, whether or not she has been vomiting (not), and all about her bowel movements.  It was a facinating few minutes. 
Tomorrow and until we reach day zero, Phoebe will receive the 3rd and final type of high dose chemotherapy and then it will be the big day.

We're here

 It is amazing how quickly life can change direction.  On the drive here Jon and I were reminising about the last time that we were in Toronto.  It was about 3 years ago and it was the weekend that we got engaged.  Now here we are, 3 years later, married with 2 kids and about to embark on the second part of our very long journey to recovery.   We were admitted today at 11am and shown to our little room.  It is small.  Just enough space for Phoebe's crib, the chair bed, and her giant IV pole.  There is no bathroom, but a small sink for washing hands.  There is a very large window that lets in a lot of sunlight and gives us a good view of the city and all of its excitement. We took Phoebe for a walk around the city last night and showed her some of the sights.  She was mesmorized by all of the lights and tall buildings and kept looking up towards the sky and smiling.  She was so happy, and throughout the walk she babbled and called out excitedly, almost as if to say to anyone who was walking by "I'm here!".  Toronto and its children's hospital have a different energy, they are busy and loud, and full of excitement and last night for a few hours, we forgot about what brought us here, and took in the city lights and good energy. 

Now our first day at Sick Kids is coming to a close.  It is almost midnight and Phoebe is sleeping peacefully.  She has had a busy day.  After we were admitted, we were walked through Phoebe's new protocol and told what to expect in terms of medications and side effects. Then our nurse went to access Phoebe's central line to do blood work and get everything ready to start chemo.  Our first bump.  Phoebe's line appears to be clogged.  Right now at almost midnight, one lumen of two is clogged and the other is sluggish.  We need both for Phoebe's treatment as it requires blood to be drawn and medications to be given simultaneously.  Our donor is ready and waiting to donate on the 12th so we have to stick to a strick schedule.  In the meantime without both lines working, Phoebe has an extra IV line in her foot, and is poked everytime her blood is tested.  It is difficult for Phoebe, so we are hoping that everything  clears up by early morning when her first treatment of chemo is due.  If not, they have many contingency plans in place to ensure that the treatment stays on course and her transplant happens on schedule. 

In typical Phoebe fashion, part two of our journey has started with a bang.

Our 2 week vacation

We are almost at the end of our vacation away from hospital life.  Tomorrow we will start the five hour drive to The Hospital for Sick Children in Toronto and begin the preparation for Phoebe's transplant. The past two weeks that we have spent at home have allowed us to see all that we have to look forward to and all that we have missed. Phoebe has spent the majority of this time laughing with her sister and watching her play.  Mae telling her: "Phoebe do like this", while she jumps and Phoebe, listening and watching intently - her bright eyes eager to take it all in. She has "scooted" along the floor, excited to grab toys out of reach, and she has tried new foods, rice crackers being a favourite. She watched as her cousins jumped like frogs, sang songs, and made faces, delighted just to see her smile.  And Jon and I took many long walks together and happily caught up on the 6 months of life that existed outside of the hospital.   Throughout the many months that Phoebe was at CHEO, we would show her photographs and tell her about all of the wonderful things that she would see once she went outside, about all of the things worth fighting for.  It is a wonderful thing that Phoebe has now seen many of those things, and knows all about what she has to look forward to. 

Today we had our last visit to CHEO before we leave for Toronto.  Phoebe had her blood tested, and everything looks good. We found out the results of some of the tests that she had done in preparation for Toronto.  Her last bone marrow aspiration shows that her leukemia is still in remission and our doctors think that she is being sent for a transplant in wonderful shape.  Apart from her feeding tube, she looks like a happy healthy 8 month old baby. 

Earlier in the week, when thinking about what lies ahead for us and Phoebe, my nervousness about the transplant overcame my excitement about completing the first phase of treatment and I began to feel very sad.  Sad at the fractured state of my family, and at the fact that my little Phoebe, instead of spending her first year at playgroups and parks, would be in the hospital.  Then I thought about the wonderful donor who is ready and waiting to give her his life saving bone marrow on May 13th and I realized how fortunate we are.  Although unfortunate to be in this situation, we are so fortunate to be surrounded by so many giving, wonderful and selfless people and lucky to be able to give Phoebe the best treatment for her cancer.  And as we are about to embark on part two of Phoebe's journey, I will keep my thoughts focused on that.

Light the Night

On October 22nd in Ottawa, I will be walking in the "Light the Night Walk" to raise funds and awareness that will make a difference in the lives of people like Phoebe Rose and the many others who are diagnosed with blood cancers  each year.  The money raised will help to fund life saving research that will work to find a cure for blood cancers like Leukemia. 
Come out on October 22nd to walk with us, join our team "Phoebe Rose Rocks", or show your support by sponsoring us.  With hope and awareness, a cure will be found! 

http://my.e2rm.com/personalPage.aspx?registrationID=1119635

Sweet dreams

As I write this, Phoebe is fast asleep in her own little bed.  This is her first time sleeping in her crib and I think she is going to have a very comfortable sleep, full of wonderful dreams.  We have so much to look forward to tomorrow: waking up under the same roof, having breakfast together, taking a walk in the sunshine, deciding what to have for dinner, watching Mae and Phoebe play, so many good things. 
Apart from a few visits to the hospital for some blood work, final tests, a bone marrow aspiration and a lumbar puncture, Phoebe will be at home until we leave for Toronto on the 3rd of May.  We have had to learn how to work her feeding pump, and also how to give a needle.  Because although she is at home, she still has daily medications, and 2 daily injections.  We are slowly taking steps in the right direction, and we look forward to the day that we will head home with less hospital equipment and fewer medications to give.  But for now we are focusing on the 2 wonderful weeks that we will spend, all under the same roof. 

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.