Wednesday, March 6, 2013

Welcome to the world of oncology

 
I write this blog with a very heavy heart. The photo above was taken just a few minutes ago, so I can at least find comfort knowing that Brayden continues to be my happy little man and that he was unphased by yesterdays visit to a place no parent or grandparent should ever have to visit:
a pediatric oncology clinic. 
 
Yesterday we met Dr G, our new oncologist. He has only been an attending physician for a very short 7 months, but he completed his fellowship at St Jude's, so I find some reassurance in that. All in all, I found him to be very compassionate, knowledgeable, and I liked him. He assessed Brayden, asked lots of questions, and then took us to a conference room where we also met our nurse practitioner and our social worker. He showed us the MRI as Brayden's granpa had not seen it yet. We then had a very difficult conversation during which we were told what to expect and we were finally given a prognosis.
 
Some things we thought we already knew:
  •  Brayden has a stage II bilateral thalamic astrocytoma
  • Our days with Brayden are numbered, but to what degree we were unsure.
  • He would be put on chemo at some point.
Things we learned during this meeting that we didn't know:
  • The stage II bilateral thalamic astrocytoma is acting more aggressively than it should.
  • This diagnosis is extremely rare so there is a limited amount of research done.
  • Only 40% of children with this diagnosis are alive 5 years following diagnosis.
  • Children with higher grade tumors have only months to live.
  • Brayden will begin a chemotherapy protocol consisting of Carboplatin and Vincristine in a couple of weeks and it will last for one year.
  • He will begin going to the clinic twice a week after his first chemotherapy dose.
  • If his blood counts do okay and Brayden tolerates chemo well then we will go once per week for as long as he is on chemo.  
  • The biggest side effects of this chemo is severe constipation, nerve pain, kidney problems, hearing loss, and lower extremity weakness and pain.
  • Brayden will have frequent hearing tests and kidney function tests.
  • He will have a port placed on Monday to administer the chemo through because it is too toxic to be given in a vein. The port will sit under the skin and have a catheter extending into a large vessel near his heart. It will be "accessed", meaning a needle will be stuck through the skin into the port, for every treatment, and hopefully his weekly labs as well.  
  • He will have his first hearing test and kidney test on Wednesday.
  • An MRI will be completed every three months, and if tumor growth is found he will change to a different chemo protocol.
  • Chemo is sometimes more effective initially on more aggressive tumors.
During this meeting Dr G handled us very gently, and while I wished he would just say it already, I'm sure my family appreciated his gentleness. We also determined during this meeting that Brayden's information will be sent to Boston Children's for an official second opinion. While we are waiting for there response we will proceed with getting him ready for chemo. After our meeting Brayden was stuck twice to get enough blood for his labs, so I will be relieved when his port is in place for easy lab draws. After drawing his labs I was given all of this reading material........
 

 
I started with this one......
 
 
It was very factual, and gave a pretty clear description of what we could expect. There is one excerpt from this book I would like to share.
 
Life Magnified:
 
"When your child is diagnosed with cancer, life is magnified. There is no such thing as a little cancer, a small joy, or a slight discomfort. You begin a roller coaster ride that takes you through your lowest lows and your greatest thrills. You learn more about what's really important in life in a few short months on a pediatric cancer unit, than some people learn in their whole lifetimes."
 
"If you are just beginning this journey, here is some advice. Many moments are filled with worry, anger, frustration, and grief. But you can make many more moments that are about laughing, celebrating milestones, and just being near the amazing child that you will come to call your hero. No matter what your future holds, you will never be sorry if you make the most of each day you have together."
 
While I am sure the future is going to be very difficult, I am trying to make the most of it. For right now though, I am still pretty emotional about the things we were told yesterday. There is a significant difference between knowing my speculations as a nurse and a physician confirming that my speculations were correct.
 
I hope for the strength and the ability to live in the moment with Brayden in order to make the best memories possible in the time we have. I also hope that we can all be patient with one another as this is difficult for everyone involved and emotions are naturally running high. I hope that we can support one another, and not take our frustrations out on each other simply because we are easy targets.

5 comments:

  1. Hi, My name is Amy Lysne and I am a friend of DaShaun. He shared your blog yesterday on FB. I just wanted to say, from one mom to another, I am so sorry!! My heart is breaking for you and your family. My husband and I live in the West Plaza/Westport area, so we are close, and I would love to help you in any way I can. Please, please, please, if you need anything, contact me arwalker75@hotmail.com. My son is 15 months, so your story hit home with me, deeply. I will continue to keep you, Brayden, and the rest of the family in my prayers, for what comfort that may bring.
    Best-
    Amy

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  2. Hi Julie, my name is Shelby Doumitt and I am a friend of your sister's. I went to Jr. High and High School with her, and I have followed her FB pictures and posts of your sweet family. I cannot even begin to imagine what you all are going through, but I wanted you to know that we have been, and will continue to be praying for you all and little Brayden as well as every single Dr., Nurse, and caregiver that will be a part of his care. We believe in the power of prayer and have seen many miracles, and I pray that God provides exactly what you need at exactly the right time.
    -Shelby

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  3. Cheri Housel WhileMarch 6, 2013 at 5:29 PM

    Hi Julie, God bless you and your family. I grew up with Ron and Mike at Victory Hills and our families spent many hours with Lee and Mary at their home. Your story has touched me and my prayers go up for you and your family. May Braden show you the way in his most loving, simple manner. Know deep in your heart that these are the times that Jesus carries us and there's only one set of footprints in the sand.
    -Looking up and sending up prayers,
    Cheri

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  4. Hi, my name is Brenda.. My granddaughter is in her second year of remission. She was diagnosed with rhabdomyosarcoma, a fast growing tumor. she also had a port and chemo and radiation treatments. It was very hard to watch her go through all this and not be able to help. She was 4 then and now she is 7 and doing great. Miracles do happen lots of prayer and support from friends and family. Stay strong and do lots of laughing, it will help him and you. You and your family and especially Brayden will be in our prayers.

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  5. Julie,
    I have sat here for the past several minutes trying to come up with just the perfect words that would somehow bring you and your family some type of comfort or peace to carry you through the difficult times ahead. While there are no words that can bring about this kind comfort, the power of pray can. I wanted you to know that Brayden and your family have been placed on serveral pray chains that span the entire county. There are literally hundreds of people lifting all of you up in pray right now. Our heavenly Father, I pray that you will bestow upon Brayden the gift of health. I ask that you wrap your loving arms around Julie and every person that Brayden has touched and give them comfort, peace, rest, and joy. For we know all things work together for your glory. Amen.

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