Wednesday, May 1, 2013

2 Years... An Update


Although things seem to be going well (very well), there is still a place inside my heart where I ache over cancer. Being at Siteman Cancer Center brings me back to the road we walked. Vivid reminders of what it all looked like and what it felt like for us. Sometimes, I still have a hard time even believing that cancer even happened. At times, I even catch myself thinking...other people get cancer. Not Daniel, not us. That kind of thing, happens to other people. Right? But, days like today, remind me quickly, that no it doesn't. It did touch my family. And, statistics show that it will most likely, touch yours eventually.  Maybe not cancer. But something big. Something scary. Nothing about cancer or any major sickness even, is fun. Cancer is horrible. Chemo is horrible. Getting blood drawn regularly is horrible. Answering your children’s questions about cancer and death… is horrible. Every time Daniel gets the least bit sick, the girls automatically say “I hope daddy doesn’t have to go to the hospital for a long time”.  It’s emotionally and physically draining. However, cancer is but something that can end up being one of the greatest things that will ever happen to you. Daniel did not walk that path alone, and neither did I. We were never alone. I know that it wasn’t only up to the great physicians that we encountered, or the treatment facility, or the wonderful drugs that he received. Daniel and I learned a great deal about one another through our experience.  And, we learned trust. So for that, I am thankful.  With time, we are beginning to heal and I am finally understanding this.

Today, we were waiting to see Daniel’s nurse practitioner after the gammit of bloodwork. Next to us was a young lady that was probably close to our age. I noticed that the she had a bag that had a distinct drawing on the front. For those who may not know, Dr. DiPersio (Daniel’s dr) founded Siteman Cancer Center. In fact, there were only 2 oncologists in the entire Barnes Hospital when he came on board. Anyhow, yearly, he has a celebration for the survivors of bone marrow transplants. Each year, he draws a new “cell man”. This year marks the 20th year that Siteman has been transplanting stem cells. This year is a huge year for those survivors as well as Dr. DiPersio. Anyhow, that bag, had the picture for this years celebration. So, I asked her if she was attending and she said, “ This year will be first. I’m 69 days post-transplant”. I engaged in some conversation with her and she discussed her feelings and how scary life post-transplant seems. I directed her towards Daniel. And said “look at this, this is what 2 years post-transplant looks like”. As she was walking back into the treatment rooms, she said “thank you, that is very encouraging- because he looks really good”.

Two full years after a cancer diagnosis. What does life look like for Daniel? Daniel does not live the same life that a normal 31 year old does. He still takes many pills, including a low-dose chemotherapy pill daily. He receives and IV immunoglobulin treatment every 6 weeks, he still follows up with his doctors in St. Louis every 3 months, he has incredibly dry eyes due to the lack of tear making capabilities that GVHD has caused and most importantly, he still has the immune system of a newborn baby. However, he never lets it get in his way. Today, we saw his nurse practitioner for his 2-year post cancer follow-up. His lab work looks great. He looks great. Still battling a colorectal problem, which involves a pretty big surgery in the next month or so (biggest risk- infection). Other than that--- he is doing great. We also saw his eye doctor. He believes that his eyes have improved and with due time, will improve greatly. He informed us that sometimes, it could take 3 years or so to see those improvements. Daniel heads back to see Dr. DiPersio in July and will then go through a more extensive round of tests which include his annual bone-density exam and routine blood work that checks for the Philadelphia chromosome (you know, the one that caused all of the problems to begin with). Notice, I did not include that he will be having a bone marrow biopsy! I am not sure that he will ever have another one- unless there is suspicion that needs to be further investigated.

Since I last wrote, I am closer to graduating nursing school. May 18th is the big day. A day that we all are very much looking forward too! I have since enrolled in a bachelor’s program. I can’t seem to stop where I am. I have big dreams--- so bare with me! I have enjoyed my children so much the last few weeks. Mia has finally become very verbal. Ashlynn is wrapping up 2nd grade and Avery had kindergarten screening a few weeks ago. For a while, I’ve been somewhat transparent about Avery. Focusing more of my energy on Mia and the lack of verbal skills that she possessed and that she was still taking a bottle at night (which she is no longer doing), and the fact that she isn’t potty trained, that I became very insensitive to some of Avery’s needs. But sometimes my transparency helps … so I share with that in mind.

Avery is such a loving, bright little girl. She just has always marched to her own beat. And gets in no hurry what so ever. Never really interested in what others are doing, she happily does her own thing and just sort of collides with what is expected of her (to be potty trained, to pay attention to directions, to wait her turn without zoning out, to stay out of people’s personal space). And because of it, little flags are going off that she needs some help catching up. I worry that kindergarten is going to eat her alive. I don’t want her to be judged.
Trying to understand how/why this has happened (she is not challenged in anyway…she just doesn’t see the importance of the expectations placed on her) – and of course, my lack of attention giving ability with school and Daniel’s needs over the past two years, has left little room for her to settle in and just grow. She has been busy constantly adapting. This makes me also realize how proud of Ashlynn I am. She is doing so well with the hands she has been dealt – (especially since he is older and more aware of what happened). Ashlynn naturally, gets things, whether in sports, academics, whatever. She is extremely intelligent and requires little directions.
So, today I struggle with how to help Avery. How to nurture her. How to undo what I can. It’s often a feeling of inadequacy.
I want to thank you for continuing to follow me… and for being patient and as always, continuing to keep Daniel in your thoughts.
XOXO Kristin Presley