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.

Monday, April 28, 2014

Noisy and hopeful

We have the results of Phoebe's bone marrow tests and they are a bit complicated.

The minimal residual disease test, that looks for leukemia at a very low level, is negative. This is good news. What makes it complicated is that the chimerism test, that looks at the DNA of the cells came back at 99% donor 2 (my cells), 1% noise/lab error/possibly Phoebe's cells. 

The chimerism test is not as sensitive as the MRD test so it doesn't make a lot of sense for it to be positive when the MRD is negative. Because of this, the doctors at St.Jude think it is a mistake but they can't completely rule out the result as some of this background noise lines up with Phoebe's genetic markers. 

So we will test again in 6 weeks rather than 3 months.

Phoebe's doctor explained that some of Phoebe's bone, blood or fat cells could have contaminated the sample but that this is unlikely as it would require a lot of these cells. 1 in 100 (1%) of the cells showed up as this background noise. 

He also explained that it is extremely unlikely that any of Phoebe's non-leukemia healthy cells could have survived all that her body has been through, so to have any of Phoebe's markers show up is worrisome because the only cells of Phoebe's likely to survive are the ones we don't want.  

The MRD test is negative for leukemia though which is reassuring, so rather than focus on the what ifs and what could be, I will focus on that. There will always be worries with Phoebe but after looking at hundreds of thousands of cells, no leukemia was found. None. The rest, this noise, it is just a mistake. 

It is exhausting though, this journey. It is exhausting in ways that I cannot properly explain. We function every day with what has become manageable stress. For us, this stress is normal. It is an always there, manageable because we have felt it for so long, stress, and as long as nothing else happens, we can handle it. 

We try to focus on the positive, and I think we do a good job of this. It is hard to be anything but positive with Phoebe around. She is the most joyful soul. 

But sometimes my mind wanders and races to thoughts of what if and the stress becomes too much. I can't help it. Reality sets in. Phoebe has had so much treatment. We need this to work. We need this to be a lab error. We are running out of options.  And on and on it goes until I force these thoughts out of my mind and imagine a beautiful grown up and feisty Phoebe. She is amazing. 

Infant Leukemia is a monster. When diagnosed within the first few months of life, it carries, at best, a 30% chance of survival. We were told 10-15%. There is no known cure for post transplant relapsed infant leukemia and very few survivors. There have been ZERO advances in treatment or survival rates for this disease in 15 years. We are simply grasping at straws.

None of this is okay. Phoebe's joy and spirit and strong as anything will to live keeps me sane, as does Mae and my belief that Phoebe will be okay, but what nearly breaks me is the lack of attention paid to treat and cure cancers like Phoebe's. The lack of options. We deserve better than leftover adult chemotherapies and pennies. We deserve a real chance. 

Please keep Phoebe in your thoughts and prayers. She is amazing and cancer free and this worry and noise will soon be behind us. 

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 ...