On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. A not well understood, difficult to treat and cure, Leukemia. This is her story of hope and love in the face of cancer and despair. It is best read from the beginning. Thank-you for visiting.

Monday, January 13, 2014

Phoebe, the Teacher

We are making our way through another 5 day course of steroids and Phoebe is not herself. She is clingy, she wants to eat everything and nothing all at the same time, she is moody and sleepy and we are all counting down the days until she is back to herself. It is especially hard on Mae and there are often a lot of tears during steroid week. This particular round seems to be worse than most and this morning Phoebe had a melt down that was unlike anything I have ever experienced. It was an all out, on the floor, kicking and screaming, refusing to put on clothes, and even throwing away her beloved soother, melt down. Later today, I overheard Mae telling her cousin that it would be "just a few more days before Phoebe is back to normal". Sigh .... 

Phoebe's blood work taken at CHEO last week looked great and we are coming up to our next trip to Memphis. We leave on the 21st for a few days and a lot of tests. We will see Phoebe's transplant doctor, the ophthalmologist, the dentist and Phoebe's heart, lungs, bones, hearing, teeth, eyes, blood, kidneys and liver will be checked in addition to the tests of her bone marrow, blood, spinal fluid and MRI of her belly and pelvis to check for disease. So many tests. Phoebe's days will start at 7am and finish at 5pm. Despite these long days and Phoebe's busy schedule, we have decided that we will all go to Memphis this time. The long days and hospital life is hard on Phoebe so we are trying to make the most of it. We have plans to squeeze in a ride on the Memphis trolley, a visit with the famous Peabody Ducks, and Phoebe has requested barbeque for dinner.  

It is also an important visit, both because it is our second annual post transplant visit where everything is tested and also because we will hopefully hear some news of when this chemotherapy plan that we are currently on will stop. We are coming up to a year post radiation and depending on which doctor we ask, this may also be when we will be ending this year of chemotherapy and steroids. So long to steroids and chemo may be just around the corner. 

So, why all of these tests at St.Jude? It is very common for children who have been treated for cancer to develop complications related to treatment. I read a study published by St.Jude recently that stated that 98% of survivors will develop some form of chronic long term side effects. 98%!  This statistic makes me want to scream. 68% of these side effects will be life threatening or disabling and some, fatal. It appears then that is not a quesiton of if, it is what. What chronic or possibly life threatening side effect will Phoebe be dealt? She has had a lot of aggressive therapy, so the likelihood of something happening is great. The journey, it seems, never ends for these kids. Not surprising though, given that the drugs used to treat childhood cancer are mostly 40 years old and meant for adults. Not at all meant for the developing bodies and minds of children. 

I dream of a day when pharmaceutical companies develop drugs for children just because it is the right thing to do. Drugs that will cure and allow children to grow up happy and healthy. Drugs that won't rob children of childhood due to short term side effects like the rages and mood swings of steroids, drugs that don't cause 98% of survivors a long term health concern. We are making progress, but still have a long way to go. 

We are thankful to be followed by St.Jude and also incredibly grateful for how well Phoebe is doing. I will take the steroids and the melt downs if they mean that she is here. She is growing into quite the hilarious and feisty little lady and she just amazes me. She is brave and fearless. Last week I took her swimming and she insisted on trying without her "puddle jumper" to help her stay afloat. She told me she wanted to "swim by herself" and marched towards the pool, down the steps, little arms and legs pumping and paddling she may have got in one stroke towards me before she dipped under and I caught her. I expected her to want to put her puddle jumper on right away but she shook it off and insisted on trying again and again, and did just that six times before choosing to float with help. When she was all dressed after her swim she proudly exclaimed that she would teach Mae to swim and "not to be scared". Love her. 

Go Phoebe go. 

http://healthland.time.com/2013/06/12/childhood-cancer-survivors-have-significant-chronic-disease/



2 comments:

  1. Before she's done, she'll have taught us all how to swim and "not be scared".

    G.P.G. (Go Phoebe go).

    ReplyDelete
  2. “…transplant doctor, the ophthalmologist, the dentist and Phoebe's heart, lungs, bones, hearing, teeth, eyes, blood, kidneys and liver will be checked…” - That’s a lot of test. It’s not easy to see your child like that. It’s a good thing that she’s fine and cancer-free now. Thanks to all the tests she’d been through, your mind can finally be at peace.

    Bruce Kassebaum

    ReplyDelete