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!
On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.
Thursday, April 21, 2011
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.
Friday, April 15, 2011
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 12th, 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.
Monday, April 4, 2011
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.