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.

Tuesday, January 28, 2014

Back from Memphis

We are back from a very busy trip to Memphis. This was Phoebe's second annual post transplant check up. It is hard to believe that it has been over two years since Phoebe's second transplant. Two years! In many ways, it feels like yesterday. I am often in complete awe of Phoebe and all that her little body has been through, and this visit was no exception.

On this trip, Phoebe had her regular every three month MRI to look for disease in her belly and pelvis, her bone marrow aspirate and lumbar puncture. In addition to these tests, she had an MRI of her heart and liver, an MRI to look for avascular necrosis, a CT scan to monitor bone density (a common side effect for children who have received steroids for treatment), an x-ray to determine her bone age, she had an eye exam, her hearing was checked, she saw the dentist (who despite my worries, she loved and even drew a picture for and insisted we deliver it the following day), she had her blood tested, her thyroid, kidney and heart function was monitored and lastly, she saw the hospital photographer.

This last visit really got to me. That St.Jude takes the time to photograph their patients each year, to have a real and honest portrayal of how they are doing, not just as numbers on a chart, blood levels and test results, but how they, as little growing, living, smiling children are doing, to capture their personality on that day, their spirit, it just warmed my heart. The photographs are done in a studio by one of the hospital's professional photographers. It took a second try to get Phoebe's photographs, but in them she is smiling big, saying cheese and I am just grateful to the hospital for acknowledging the importance of this moment and for recognizing Phoebe for more than just her cancer. I think it speaks volumes to the type of hospital that St.Jude is and to the fact that they often go out of their way to truly celebrate their patients.

As for our test results ... they are good. They are not all back yet, but what we have so far is good news. Phoebe's MRI shows no evidence of disease, her spinal fluid is clear, and the chimerism of her bone marrow is 100% donor 2 (still all my cells). We are just waiting for the MRD results. This is the most sensitive test and so really important. We have had a perfect chimerism with positive MRD before, so I am anxious to know the results.

In terms of all of the other tests, most are good. Phoebe's hearing and vision is perfect, her heart is functioning well, her kidneys, despite having one that has never fully recovered from the damage done by the mass, appear to be working well. She does seem to be suffering from hypothyroidism which is a common side effect for children who have received total body irradiation (which Phoebe has not), so we will be adding an endocrinologist to our list of doctors. The iron overload on Phoebe's liver is severe and requires treatment before it causes more problems, but treatment can't begin until we are finished with chemotherapy, so we will wait. This was caused by the countless blood and platelet transfusions that Phoebe required during treatment, transplant and after her relapse(s) to survive. To put in perspective, during her first transplant, Phoebe required daily and sometimes twice daily transfusions of blood and platelets to survive the first two months as her body recovered and without the blood she received after her first relapse, which was also every day or every other day for many months, she would not be here today. Her body just wasn't making any healthy cells, or anything except for the Leukemia cells, so without blood donors, she would not have survived. It's as simple as that and we are forever thankful to everyone out in the world who donates blood. Phoebe does now have a huge build up of iron on her liver and how this is typically treated is by phlebotomy -  essentially taking blood from Phoebe to draw the excess iron out of her system.

Had any of these issues occurred in my healthy child before Cancer struck, I would be scared, worried, heart broken. I would probably have cried and wondered what I did to cause this. Today, I am relieved. It is not cancer. My motto these days is anything but cancer, but as these issues start to add up and as we learn more about the devastating effects of these harsh treatments, I worry that this will change. There are many side effects of childhood cancer treatment that are as scary and life threatening, if not more so, than the big C. Right now, however, if these issues are treated they will not threaten Phoebe's life and so we are lucky and grateful and will continue to put one foot in front of the other, thankful to be moving forward and away from cancer.

Please keep Landon's family in your thoughts and prayers as they grieve the loss of their beautiful boy. Landon passed away early Sunday morning after fighting Leukemia for most of his life. We spent some time with Landon while Phoebe was in patient at CHEO and he literally lit up the ward with his energy and beautiful spirit. The joy he brought to everyone around him was contagious. Back then, there was a bright, red shiny tricycle on the ward, which has since gone, but I remember watching Landon race around the ward on this bike. He truly made our days there brighter. Rest in Peace, Landon.

We need a cure.

1 comment:

  1. “…monitor bone… an x-ray to determine her bone age, she had an eye exam, her hearing was checked, she saw the dentist… she had her blood tested, her thyroid, kidney and heart function was monitored…” – That’s a lot of tests. And it’s a relief to hear that most of it came out with good results. Those are really good news for both of you. Just keep your spirit up and for sure, everything will continue to be that way. Stay strong!

    Bruce Kassebaum