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.

Monday, November 16, 2015

Home

We are making plans to come home and are transferring care to CHEO's ICU. Phoebe is very sick with infections, but we hope and plan, as long as it will help Phoebe, to continue treatment for these at home. There is no cure for refractory infantile leukemia and we have tried every single thing we can. 

St.Jude, being the incredible and wonderful place that it is, is going to great lengths to get Phoebe home to Ottawa. I don't know if this would be possible anywhere else. They are arranging a medical transport flight, and because of the extenuating circumstances, they may allow both Jon and I to travel with Phoebe. We could be leaving as early as tomorrow. 

The people who have cared for Phoebe throughout this journey are some of the most beautiful people I have ever met. They have done so much to help Phoebe, but also to help our family, and even though we are going home without the cure we so hoped for, we will always be grateful for this beautiful place and their mission. St.Jude has given us time and will always hold a special place in our hearts. 

We are still hopeful, but our hope has changed. With everything we have, we hoped for a forever cure and to bring home a healthy child, but now we hope for time. We hope for healing. We hope for smiles, good days, and strength - for Phoebe and all of us. We hope Mae and Phoebe understand. 

Phoebe is still sick with many infections, she is requiring high flow oxygen to help her breathe, but each day she spends some time playing, watching movies, and telling us all what to do. At Phoebe's request, we have started playing freeze dance at least once a day. Phoebe plays and pauses the music, we dance, and she smiles. I would do anything for that smile.

We are devastated. There are no words that even come close to expressing how painful and heart shattering this is. How hard it is to watch Phoebe suffer and fight to breathe as we have been doing. We wish things were different. We wish there was something, anything, we could do that would guarantee healing and we will continue to do all that we can. All that we can right now means bringing Phoebe home where she can be surrounded by love. It means holding her, loving her and supporting her through whatever may come. We just love her so much. 

Thank-you all for loving and praying for Phoebe. Please pray for a safe journey home and keep our sweet girl in your thoughts. 






15 comments:

  1. Have a safe trip home. Sending you more hope... Xoxox

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  2. Thinking of you as you journey home.

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  3. Beautiful words and very touching....we hold your little one in our prayers...praying for a safe trip...

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  4. Many prayers for a safe trip and lots of time together.

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  5. Prayers and love to you.
    Carrine Sibanda

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  6. Praying for you and your beautiful family <3

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  7. Praying for safe travels home, days of dancing and sweet Phoebe keeping all of you "on your toes" and lots of smiles! There is no place like home!!

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  8. best wishes for your journey home & praying your time together is full of many more smiles, xo

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  9. We welcome you home to Ottawa with open arms and hearts. Lots of love and strength from our family to yours xoxo

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  10. Thinking of you guys every day. Safe journey home. Hoping for a big cloud of love to surround Phoebe and Mae and the whole family.

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  11. I have a 3 and a 5 year old - we would love to send Phoebe and Mae a little care package. Would you mind a posting mailing address? Sending you best wishes for a safe trip home and happy days ahead. From a friend you have not met, Susan

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  12. leslie Innes & family in Brantford ..Thinking of you & praying for you everyday .. Love & hugs & strength for all your family xoxoxo

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  13. Sending love, strength and support. Believing in Phoebe!!

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