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.

Friday, November 15, 2013

It has been a while since my last post and for most of that time, all has been going very well. Phoebe has been to the hospital for her regular visits, and when not there, she has been growing and thriving as any three year old should.

Last week she had a lumbar puncture with chemotherapy at CHEO and since then, she has been a bit off. The lumbar puncture is usually one poke or needle in the spine and once the needle is in, chemotherapy is injected into the spinal fluid, the purpose being to target the central nervous system as this is an area that Leukemia likes to hide and therefore a common site of relapse. Phoebe also had disease here at diagnosis. Because we have a blood-brain barrier, our brain is protected from harm but this also means that the chemotherapy that is given through the blood stream does not penetrate this area, so we have lumbar punctures and chemotherapy. This all makes me nauseous and the morning of this test I was feeling especially anxious. Despite the number of times that Phoebe has had this procedure done, it still makes me nervous. This time around I just kept thinking of something that one of Phoebe's doctors told me once. She said it is 80% skill, 20% luck. 20% luck is not very reassuring when the tiny spine being punctured is that of your child.

This lumbar puncture was unlucky, I guess. The first needle wasn't in the right place, despite being in Phoebe's spine and so another needle and another doctor gave it a try. The second time was successful, but Phoebe was left complaining of back pain.

The back pain was followed by complaints of mouth pain unrelated to the LP and chemo, but still a cause of worry. The mouth pain was followed by a runny nose and congestion and then today a cough that sounds like croup and now the mouth pain is throat pain. All of this on top of a particularly rough week of typical toddler bumps and bruises and an irritible Phoebe has left us all exhausted and worried.

We had a scheduled visit to CHEO today for blood work and chemo and because of Phoebe's symptoms, a visit with the doctor. Phoebe's blood work is off. Her platelets which normally sit at at least 300 dropped to 92 and her hemoglobin also dropped a bit. It is worry on top of worry on top of anxiety on top of just pure desperation. We long for normal, we are desperate to stay on this smooth path and although we believe and are incredibly hopeful, we can't help but worry that heartache and chaos will strike again. Christmas is coming and there is nothing I want more than for my family of four to stay as far away from the hospital as possible at this time of year. If and when we do stay far away from the hospital at Christmas, it will mark Phoebe's very first Christmas in her own bed, under her own roof, with her family.

This drop in counts could be and is probably related to the virus that Phoebe is fighting or it could even be related to chemo. It is "normal" to see a drop in platelets with a virus and chemo, but Phoebe is not normal and so my mind races to those very dark places and I worry. The phrase "worried sick" was probably coined by a frantic and anxious mother (or father) with a sick child. Phoebe's platelets last week when she was not fighting a virus were normal as was her hemoglobin. Her body is probably tired as it should be, a lot is expected of it. Her body is expected to fight cancer and everything else that a three year old might pick up, all while still undergoing chemotherapy and acting completely normally and full of energy. We expect a lot and Phoebe usually delivers. She is as normal as normal can be despite chemotherapy, lumbar punctures, and the incredibly long history of treatment that she carries with her.

The plan is to bring Phoebe back in a week to check her blood again and hope that all is back up and back to normal. I hope that what she is fighting passes quickly and that she is back to herself. I find myself frantically asking her to tell me how she feels, looking for clues and she normally responds by laughing at me or ignoring me, but then will tell me very matter-of-factly that something is wrong. This morning when she discovered she had a croupy sounding cough she said "something is up with my mouth! What is going on!?"

Today I was hoping that the blood work results would calm my worried mind, but instead they did the opposite. They showed that Phoebe is fighting something, that she has reason to be acting unlike herself. Despite all of this, that Phoebe is feeling unwell, she still received her biweekly doses of chemotherapy and today she will start steroids. We expect a lot from her and I can only begin to imagine how exhausted she is. 

Making our own fun after five hours in an isolation room at CHEO. Mae finally go Phoebe to wear a mask! 

Phoebe writing :) 

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