We are hanging on and although we have had many dark days lately, days filled with worry and fear and sadness, we have glimpsed the light at the end of this tunnel and we are clinging to the hope that we see in it.
In honour of thanksgiving - this post is for all we are thankful for. Despite our struggles, there is always something to be thankful for.
Above all else, we are thankful for Mae and Phoebe.
We are thankful to be here at St.Jude and for each and every person both here and away who has cared for Phoebe. We truly have been blessed with an amazing medical team and as Phoebe gets more complicated, this team just keeps getting bigger. Today Phoebe saw her leukemia and infectious disease doctors and nurses, but she also saw physical therapy, music therapy, speech therapy, child life, and psychology. She is more than the disease that brought us here and the focus on getting her back and better is strong and determined. Phoebe is not happy about all of these visitors , but for us, they represent hope. Among these therapists are people who, years ago, first helped to teach Phoebe to stand and bear weight on her legs, to walk, talk and eat.
We are thankful for medicine, science and research. Phoebe's leukemia has responded to the treatment - or the amount of treatment she has received as we still have yet to finish the course. Under a microscope, no leukemia was detected. This means that technically, Phoebe is in remission. The more sensitive tests have detected leukemia at a low level but we are making progress and this response is a much needed and big step forward.
We are thankful to have the chance to continue to fight this disease again and for the time that this gives us.
Phoebe is still struggling with many things and her body is tired, but there are many people working to help her get better and we are seeing progress. She is still having fevers but they are less frequent and the marker for infection in her blood is slowly and consistently coming down. We still have very far to go, but we are making progress.
We are thankful for progress.
We are thankful for Phoebe's strength, her spirit, and her stubborn determination. She has now pulled out her feeding tube twice in two days. Although we are not happy about this, how she has done it has given us a beautiful glimpse of feisty Phoebe. Last night she asked her Daddy to go and get her a glass of milk, knowing that he would jump at this because we are desperate for her to eat. When he returned, she was holding the tube in her little hand. The night before, she carefully and quietly pulled off all of the stickers and bandages that were on her body. She pulled off the leads for her heart monitor, the sticker on her toe that measures her oxygen saturation, and the band aids from former IV lines ... and then she carefully pulled off the stickers on her face and out came her feeding tube.
Today the doctors were discussing how to get the feeding tube back in - we need it in to give important medicines that Phoebe refuses to take by mouth, and for much needed nutrition. After discussing how to do this, the consensus was that Phoebe is just too smart for all of us and the tube can stay out for 24 hours to see how she does. Phoebe has told us that she would like to try to eat, and so we are listening to her.
We are thankful for family and patient centered care and for doctors and nurses who take the time to listen and hear us.
We are thankful for family and friends and for the kindness of strangers. We couldn't do this without the help and support and love that we receive from these wonderful people. This weekend was not a typical thanksgiving but we did get a brief glimpse and hugs from family and Mae was so happy to be briefly united with her cousins.
We are thankful for time. Right now that is time to heal and rest and recover.
We are thankful for all of this and so much more.
Happy Thanksgiving Canada.