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.

Tuesday, December 30, 2014

So long 2014 ...



We are home.

All is well. We had a few rough days when we arrived due to chemo related bladder retention and pure exhaustion for Phoebe, but today she is much improved. It is nice to be home.

We have had two trips to CHEO for labs since we arrived back on the 23rd, and all looks good. Phoebe still has elevated liver function, she still needs a platelet transfusion once a week, but all is relatively well. 

When at home, Phoebe has been climbing stairs, eating well, trying to keep up with her big sister, and just getting better. She is not herself and tires easily, but she is leaps and bounds from where she was two months ago.

Much improved. 

We have been preparing our house and attempting to prepare our lives for more and many months away. It is easier said than done. 

Mae has been soaking up this time - spending as much time as she can with her cousins and her toys. She is so happy. 

We return to Memphis in the new year and have appointments at St.Jude on the 5th. We aren't sure what to expect - we know there will be more chemo, a possible transplant on the horizon, and a lot of questions. We also know that there may be no answers and no clear path. If we stop treatment now, barring a miracle, Phoebe's disease that has returned in one form or another three heartbreaking times, will most likely return again. If we choose to stay home, we are out of options. We have been out of options at home, excluding palliative care, for three years. If we push forward and choose aggressive treatment to treat a terrible and exhaustingly aggressive disease, it could all prove to be too much. When will it be enough? Will this third transplant be what finally takes? With all that we have, we hope so. We need it to be so. 

We are so grateful to still have options. To still have hope, but this is so very hard. 

We see Phoebe. She is finally gaining strength and energy. She is eating and playing. We watch her as she gets better and we know that we are about to hold her as she endures things that would cause most people to completely break down. Then we think; she has persevered, she is strong, we have come so far, she is unstoppable - but we worry, we worry all the time. What if it will prove to be too much? The days and weeks that we spent with Phoebe in the ICU were terrifying and eye opening and we know that having Phoebe here today is a blessing and a miracle. It could easily have been very different. 

So, on the Eve of the new year, I find myself exhausted and feeling a bit desperate. Please let 2015 be our year. Please give us a break and time to breathe and heal and live without fear. Please give us time to pick up the pieces of our broken lives. Please let any further treatment be what Phoebe needs to finally be rid of this. 

2014 brought us remission, we glimpsed a beautiful life without cancer, hope for the future, and growth, but we also saw relapse, more cancer, a struggle to access treatment not available in Canada, a trip to Colorado for innovative therapy that is only NOW available in Toronto, six months later (we could never have waited), and a return to St.Jude for more treatment. 2014 shook us to the core with fungal infections, brain lesions, strokes, seizures, ICU, more cancer, and too many complications to list. We will probably never recover from the ugliness and pure heart ache of 2014, but we will continue to move forward because that is what we do. 

We move forward. 

We are closing out the year with Phoebe in remission, she is healing from her infections, she is gaining strength. Phoebe is here, with a beautiful and ferocious spirit, she is here, and we will
always be full of HOPE. 

We don't know what 2015 will bring, but we will face it together. We will continue to move forward with hope and with gratitude - we get to take these steps forward and for that, we are thankful, 

Thank-you for continuing to read Phoebe's story, for supporting us and holding us up. Each donation, comment, message, prayer, thought, letter, gift, and word of support means so much to us. We can't travel this road alone and we are forever grateful to all of you who continue to hold Phoebe close.

Happy new year.

"Hope smiles from the threshold of the year to come, whispering 'it will be happier'"  Alfred Tennyson 









2 comments:

  1. Phoebe may this year be a much easier one on u princess with laughter healing prayers and strength.... love samantha reid

    ReplyDelete
  2. Hoping and praying 2015 is going to be a good year for all of you!

    Jackie
    long time reader, so been praying for Phoebe and her family, just thought I would let you know.

    ReplyDelete