Thursday, September 2, 2010

Decisions

Today Wendi, my parents, Jeremy, and I met with Dr. Leary and the oncology team to discuss the next steps in Cash's treatment.  It is apparent to the team and tumor board that the chemotherapy/stem cell infusion wasn't accomplishing what they had hoped it would do.  With that, they came to us with a proposed plan of treatment that they are hoping will slow down the progress of the tumor.  The meeting lasted almost two hours and while it was emotional for everyone, we left feeling better than when we arrived.

The tentative decision, and I say tentative because we have to meet with the radiology specialist on Tuesday to discuss the pros/cons of gamma knife but I'm getting ahead of myself...

First of all, we are going to have Cash's hickman line replaced with a port (woohoo!).  It will allow Cash to be able to swim and not have two lines sticking out of his chest that were a constant source of fear of infection.  That will take place on Tuesday.

We are going to give Cash two different low-dose chemo's that we can give orally to him - one chemo is 5 days in a row and the other is 10 days in a row.  I can't remember if we then wait a few weeks and start the process again or just keep rotating but we'll find out next week.  Cash will start this a week from Tuesday.

In addition to the low-dose chemo, once a month Cash will be receiving a lumbar puncture that they will then give another drug, methotrexate, right into his spine.  He'll get that next Wednesday.  All three of these drugs have very limited side effects, which is very high on our list (more on that below).

The doctors are very concerned about the spot behind his eye.  It's actually in the temporal lobe and while very small, it wasn't on the scan 6 weeks ago.  The radiology specialist at the UW indicated that he believes gamma knife radiation is a viable option to 'hit' the spot.  The only side effect is swelling and we have to meet to discuss whether or not that can temporarily affect his vision, however, the doctor believes it is far enough away and shouldn't cause damage at its current size.

Our main goal is selecting these treatment options are to allow Cash to remain relatively healthy and hope that these treatment options slow down the growth of the tumor.  It's obvious it's spreading and there have been studies that show that with this combo (chemo and methotrexate) this type of tumor can slow down and in some cases stop growing. 

We deeply hope the tumor stops spreading and growing but are realistic in understanding what he is up against.  Cash has been relatively healthy during all of the 'poison' we've given him and we'd like it if he remains healthy so we can enjoy our time with him, take him places, and live life to the fullest so-to-speak.

Speaking of going places, the Hoolsema's have offered their home in Birch Bay to us this weekend and we're heading there tomorrow - they even put food in the house based on what Cash likes and we're already thankful and excited to spend a weekend at the beach with family and friends.

In other news, 24 people have signed up on the Cash of Hope team in the Seattle Run of Hope - the list includes two family friends from California, Renee and Saul Castro.  They are flying up to visit and walk with us which is amazing.  I'm so excited to have so many join the team and help support research - hopefully someday there will be a cure for brain tumors and your support of Cash's team is incredible.

God has been so good to us - in spite of the circumstances, Wendi and I are continually thankful for His peace, wisdom, strength, courage, and hope that He has given to us and Cash.  We continue to need your prayers as we enter this next phase of treatment - Cash's birth was a miracle and an answer to prayer and we continue to pray for healing.

I know this post was long but there was much to say and much more I probably could have said.  Thank you and have a blessed long weekend!

6 comments:

  1. Oh Jackson and Wendi! You and your family are amazing. Thanks for letting me travel this journey so closely with you. I treasure each moment spent with any of you, that goes for all my kids and grandkids. Love you, see you tonight! Mom Parriera

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  2. Father thank you for this family. Thank you for their child. Thank you for their vulnerability. Thank you for their heart. I pray this weekend gives them peace, rest and time to refocus and regain the strength needed for their journey. Thank you for allowing their story to help others along the way. Thank you that they are on the hearts, minds and in the prayers of many. We love them so.

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  3. Jack and Wendi,
    You are both such amazing, inspirational people. We are so sorry you have been asked to walk this journey but are so proud of the way you have walked it. We will continue to pray for a miracle for Cash and strength for your whole family to carry on.
    Thank you for sharing your story!

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  4. Hi Jack and Wendi, all I want to do is hug you all and send true love from my heart. I get it! I have hope, I always do.
    Christophers Dad, Allen

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  5. Cash is and continues to be such a miricle and a blessing. He's an absolute doll, just a sweet-heart. Through all this he continues to laugh and have joy; he's amazing!! Even when the times are so so hard, Jack & Wen I LOVE how you continue to bring peace, happiness and your love for God,into your home... always. All your boys crack me up with their glow and smiles! Love your family. What a great weekend and HaPPY hAPPy Birthday JR! Love Auntie

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  6. I have been and will continue to just keep you and your whole family in my prayers.
    Your love for our Lord God is evident and we know this faith will keep you lifted and supported too. I wish with all my heart that you and the family would not have to go through what you are going through and ask God to surround you with His love and with the love and prayers of his people.
    I am happy to hear that you have a chance to get away to the Bay and hope you have a wonderful, relaxing, enjoyable time spent with family...
    praying consistantly,
    Melody

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