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, February 2, 2012
A Glasgow Kiss
This week's chimerism results show 100% donor cells. Go Phoebe go! She is doing very well and is eating more, drinking more, and doing something new everyday. Her latest achievement is to take steps while holding on to furniture - her obsession with goldfish crackers has come in handy for this as we have learned that she will walk for fish.
On Wednesday, four eye doctors had a look at Phoebe's eyes while she was under sedation and today another doctor gave her an eye exam. The good news is that she appears to see very well and she passed her eye exam with flying colours. We, of course, already knew this because Miss Phoebe has an incredible ability to find and pick up very tiny and often clear objects and examine them with wonderful and careful curiousity. Thankfully, she is not a baby that puts things in her mouth.
The not so good news is that there appears to still be few answers to what may be causing or what could have caused the papilledema. One eye doctor commented that this is "unheard of" for someone Phoebe's age. It is just not seen. They were puzzled and they asked a lot of questions about Phoebe's history. One doctor asked why Phoebe was on the blood thinners. Jon explained the original cause was an overdose of platelets that Phoebe received just days after her diagnosis. All of the opthamologists focused on this for the rest of meeting, calling it a traumatic event and suggesting that it could have caused the papilledema as it could have temporarily affected the veins in her brain and skull. They asked what had been done after this "trauma" to ensure that no damage, other than the very obvious clot, had occured. And our answer was simply, nothing. Nothing had been done.
And so, once again, I am hurt and heartbroken. Talking about this incident has brought up memories that I have been suppressing for a long time. Memories and images of Phoebe, days after her diagnosis in the ICU, her leg purple and swollen to 10 times its normal size, unable to move, screaming in pain. And the doctors telling us - well, at least she won't need platelets for a while. For the first time since it happened, it was described accurately - a trauma. Phoebe's body, a tiny body that was already fighting for life, had experienced a traumatic event.
We have no photographs of the first week of Phoebe's diagnosis because we were in too much shock and disbelief, both with all that we were processing in terms of her disease, and all that we were seeing in regards to this incident.
Phoebe still receives injections of blood thinners because she is now at a high risk for clotting, but I could never have imagined that 15 months later we would be dealing with more possible complications. It breaks my heart to know that Phoebe's already incredibly difficult road was made harder by a very unnecessary and careless mistake.
The opthamologists and neurologists are going to watch Phoebe, and monitor her eyesight with regular exams. And in the meantime, we are going to be hoping for answers and solutions to this frightening problem. Phoebe, as we know, is different. She is a child that will always have to be closely watched. This is our life. Our new normal. And we will manage because Phoebe will guide us.
And so onwards and upwards we go and today instead of past mistakes I choose to focus on 100% - on those powerful cells that are doing magical things inside Phoebe's body. At this exact moment I am imagining them physically kicking Leukemia to the curb, giving any bad cells a Glasgow Kiss (think aggressive head butt), and generally triumphing over this Cancer that has plagued us for so long. Too long. Those cells are allowing her a chance at a healthy and cancer free life. A life spent in parks and playgrounds rather than hospitals, because seriously - I think we have had our fair share of hospitals for one lifetime.