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, January 5, 2012

Kicking Leukemia to the Curb

Today we met a fellow Canadian.  Unfortunately, he is a neurosurgeon.  Phoebe had another eye exam this morning (by an opthamologist, not the Canadian neurosurgeon), and this doctor noticed the same papilledema (swelling) that was behind Phoebe's optic nerves on the last exam.  She recommended Phoebe see neurosurgery to rule out anything major.  The neurosurgeon commented that because Phoebe's intracranial pressure was normal at the last exam (they do a lumbar puncture to check this pressure), and her MRI appears to be normal, he didn't see reason for any of his interventions.  He did think, however, that if the swelling persists, in order to protect Phoebe`s eyesight, a surgical procedure that makes an opening in the sheath around the optic nerve to allow the extra fluid to drain out would be recommended.  It sounds invasive, dangerous, and intense and I am hoping that it is not necessary.

During our visit with this fellow Canadian, Phoebe was all smiles, waves and shouts of "Hiaaaaaaaaaaaa" - her way of saying hello these days.  She appears to really like to meet new doctors, and frankly, I have had enough.  No more doctors.  Especially neurologists and neurosurgeons.  I would like this mysterious problem to simply go away. Sometimes I wonder though if all of this, these many months of chemotherapy, 2 bone marrow transplants, and Leukemia - if this is just the beginning of the life affecting side effects that we are to come to expect.  Each drug that Phoebe has been on has pages of side effects, some life threatening, many life altering, and others very mild.  They range from rashes and high blood pressure to sterility and include everything in between.  In regards to side effects, I have always thought that we will deal with them when and if they come; I guess I wasn't expecting them to come so soon.  Papilledema, if left untreated can cause significant vision loss.  Add that to the list of possibly long term side effects and it is completely and incredibly overwhelming.  Is it too much to ask to make it through all of this completely unscathed? 

On the bright side, and there is always a bright side - Phoebe continues to do and look very well.  Today we met with her transplant physician, who she was also very happy to see.  She smiled and laughed through the visit and he commented on how well he thinks Phoebe is doing.  Everything transplant related, he said, is going perfectly.  Her counts are great, her graft is strong, and her chimerism is perfect. Oh, and there is no evidence at all of any disease.  Anywhere.  He said that the job now is to make sure that everything continues to go well, but he is hopeful and very optimistic.  He used the term "success" when discussing the future and Phoebe's transplant.  A hopeful and optimistic doctor, we have learned, is truly a wonderful thing. 

In other positive and encouraging Phoebe news, she is eating more and more each day.  She is still not taking nearly enough to warrant removal of the NG tube.  The tube that has pretty much become a part of her body for the past 14 months, but we are definitley making progress.  Jon and Phoebe make quite the team at mealtimes - he has always had an amazing ability to get her to eat.  She will always open her mouth for the spoon or the cup when he is holding it and considering all that she has been through and the many reasons she has not to eat, it is nothing short of a miracle and Jon, the miracle worker.  In the past when all of this began and Phoebe refused to drink from her bottle, in frustration I left it up to Jon and asked him to "get her to drink". Within hours, even if it was just a couple ounces, the miracle worker would make it happen.  We have learned through trial and error of late that Phoebe likes icecream, will drink milk from her cup, and very much enjoys picking up and eating very small food.  Her time spent in the hospital has blessed her with incredible dexterity and pretty amazing fine motor skills.  Yesterday she was stacking and successfully making a tower with her tiny corn and peas.

And so despite the ups and downs of hospital and post transplant life.  The possiblity of some very overwhelming side effects and  visits from many, many doctors - we are moving forward.  One step at a time, one day at a time - we are doing it.  Kicking Leukemia to the curb.

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