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, April 17, 2014

Port-free 2 visit Phoebe

We are home from St.Jude. It was a busy trip and in typical Phoebe style, full of surprises. This trip reminded me of the nickname "2 visit Phoebe" that was given to us at SickKids because Miss Phoebe always seemed to have a trick or two up her sleeve at the end of a long day. 

We arrived on Sunday and had our first appointment bright and early Monday morning for blood work. When Phoebe's nurse tried to access her port, she didn't get any blood return, just a spot of old, dark blood, and it wouldn't flush without Phoebe crying out in pain. This is not a good sign. She called the line nurse and we were sent for an X-ray. The X-ray showed Phoebe's port was completely broken, and the catheter (the tubing that connects to the port) was disconnected and appeared to be free floating in her chest, in and around her heart. The port is where Phoebe receives all of her chemo, IV medicines and also the source for blood work. It is surgically placed, sits under her skin and has a catheter that runs through a vein towards her heart. Unlike an IV that only lasts days, it is semi-permanent and can stay in for years. Phoebe had hers for about 9 months. 

After hearing this news and then also seeing it on an X-ray, I was terrified. I usually like to know exactly what is going on, but with this, I wished I had not looked at the X-ray. At one point, when Phoebe's doctor was describing where it was, I wanted to ask him to stop talking - I felt physically ill. There was talk of things that could go wrong and cardiothoracic surgeons, and for once I longed for blissful ignorance. These things that are just not supposed to happen, seem to always happen to Phoebe. 

Thankfully, the surgeon at St.Jude was able to remove the port and the catheter with image guided therapy, causing the least amount of stress to Phoebe. It took longer than expected and she has two new incisions - one in her chest and another in her side that once healed, will join her collection of scars. Phoebe has far too many scars on her little body and has been through far too much. I would like all of this to just stop now. Enough. 

After the excitement of the port removal and recovering from the shock of possibly needing open heart surgery, we moved on to the purpose of our trip - Phoebe's MRI, bone marrow aspirate and lumbar puncture. It seemed though that I was the only one recovering - Phoebe seemed fine throughout all of this. Happy even. 

Phoebe had her tests on Wednesday and while she was sedated she also had an eye exam. Her eyes look great, no evidence of papilledema and no need for glasses. This is good news as at one point on this journey we worried that Phoebe would suffer significant vision loss. Her MRI looks great, no evidence of disease, and her spinal fluid is clear of Leukemia. The preliminary results of bone marrow tests are negative for Leukemia and we should know the rest of the bone marrow results next week. 

Despite all of this activity and an extra trip to the operating room, Phoebe truly had a great time in Memphis. We pulled up to the hospital and she said "we're here!". She brought her "running shoes" and literally ran from the moment we left Ottawa to the moment we found out she had a foreign object in her heart. And she ran like the wind. There would be no more running after this news though and just remembering all of her activity sent me into a panic. Instead, in the arms of a favourite nurse, she got a walking tour of the radiology area of the hospital, "where the grown-ups work". She happily showed anyone and everyone she met the books and toys she had in her backpack. Pulling everything single thing out and explaining in great detail the contents for one lovely volunteer who we first met when Phoebe was small and just arrived at St.Jude. "This is my Barbie book, but you can't draw in it ... here is my pony ... this is my mermaid book ... Ben, Ben ... can I show you something? Look what I have here, Ben". Ben is also known for his bag of toys - wind up toys specifically, and Phoebe had him pull out the contents of his bag too. Each and every toy was taken out while she peered in to see if he had anymore. It is a beautiful thing to see her enjoy herself on these trips as I worry that they are hard on her. To see her run the halls of St.Jude is truly heartwarming and a testimant to this great hospital. 

We hope to have more news soon but in the meantime, we will be enjoying Easter at home (a first since 2011) and a visit from the bunny who always knows where to find us. 

Go Phoebe go ... 

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