Sunday, July 24, 2011

So This is How it's Gonna Be

Ry and I talked on the plane to Indy about what we thought the "plan" should be. Originally we thought surgery, radiation and then ??????. Those plans quickly changed; as I mentioned in the last blog post when Dr. Ackerman said the new lesion (the large one) is inoperable due to its location and it would make him a paraplegic if she even tried. So in my head it made complete sense but just for haha's I asked her if we went through the coarse of action that has been put in place and it comes back would she ethically or morally be opposed to operating to get this damn thing out-she didn't answer.....(Please don't judge me for considering this option as I just want my son to live, I want to watch him grow up and get married, in whatever capacity that maybe).

So after Dr. Ackerman came in yesterday Dr. Shih stopped by late afternoon and we discussed our "Attack Plan".  He wanted (and did) start chemo yesterday. He wanted to be doing something while we wait for the Proton Beam Clinic to get their ducks in a row for us. So Last night he started Topotecan and Cyclophosphamide-more like 2am this morning but still. So we are doing 5 days of that concoction, he didn't get very bad side effects from this combo last time so we are praying that this will do for now. On Tuesday or Thursday this week, they will take us by Ambulance down to Bloomington IN where the Proton Beam Clinic is and run there gamit of testing along with getting his mess cast set.

We will live in Jill's house for 6 weeks. He will get radiation everyday of the work week (which shouldn't take too terribly long the only problem is because of his age he has to be sedated every.single.day) which then means NPO (no food) from midnight the night before until after radiation. That is always fun and enjoyable as your toddler wants food just doesn't understand why he can't have it. Meanwhile we will go to Indy once a week for blood work.

After radiation we are looking at taking a vacation (I know again you say, but when you don't know how much longer your child will be with you those memories are more important than ever.) Barring anything else STUPID coming up on scans we will start metronomic chemotherapy which will be outpatient and hopefully we can be on this a long time and diminish the cancer completely.

The weirdest thing about this whole situation is that Keegan is not symptomatic meaning he should be having urinating problems and not able to move his legs but neither is the case. I mean its a good thing that he doesn't have these symptoms but of coarse Keegan does everything his own way.

On a side note and I am not sure if you all remember my post about radiation a few months ago but because he is so young and his IQ is not in the normal range for his age due to prematurity, missing part of his brain and all the chemo and time spent in the hospital, we are looking at a gradual IQ loss of 30 pts which is VERY VERY significant. He will retain what he already knows but new things will come much much harder for him.  This is hard for me to grasp but I know and truly believe after the last almost 2 years Keegan is with Ryan and I for a reason, we love him with all our heart and willing to go to the deepest depths to save our child's life.

{{ We are looking to go somewhere with Keegan that is not outlandishly expensive but a great way to make memories, if you have any ideas please leave them in the comments section or email me at chupp {dot} beth @ gmail {dot} com -Thank you!!}}

7 comments:

  1. I am constantly amazed by you, Beth. I do not know where you find your strength and your courage but I want you to know that you are just amazing. Sending you and your little family so many prayers and so much love.

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  2. What about a Disney cruise? Everything would be right there, Keegan might like the characters...

    Kisses to Keegs. Praying for you.

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  3. Where is it that you find your strength and courage in the face of this disease? You are truly remarkable and my heart goes out to you and your entire family. We will continue praying for your sweet Keegan and I think it is wonderful that you are planning a vacation. Those memories are so special and will always be treasured.

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  4. Continuing to pray for you all and for this cancer to be gone. I am glad there is a plan.

    Praying Keegan suffers no side effects from the radiation.

    <><

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  5. Jessica FarringtonJuly 25, 2011 at 12:05 AM

    im prayin still beth... you & keegan are my heros you two are the strongest people i kno & beth keep faith keegan is a strong baby nothing will bring him down... I will continue to keep you all in my prayers! <3

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  6. When my daughter was two we went on an inexpensive trip to St. Louis. We visited Grant's Farm, which has animals and such and is free! We also went to the Magic House, a sort very large childrens play place. There is a little town with inside with homes, a library, grocery store, bank, electric co, and a stream to fish in. Then we went to city museum which is uniquely awesome. We all had a blast, for a little price. It was a perfect family trip with a young child.

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  7. Beth, my husband & I would take our children to Sea Mist, in Myrtle Beach every year. If you travel in the beginning of September when the kiddies are back to school the rates are ridiculously cheap. Their pool stays open until late September and depending on the building you choose, you're right on the beach. We did a trip for 1K for 4 for a week and had a balcony room with kitchenette over looking the ocean! Worth every penny! And it has a ton of amenities. It's a hidden jewel IMO. http://www.myrtlebeachseamist.com/

    (From their site:)

    In addition to accommodations, each person in the family will receive:
    Passes to Family Kingdom Amusement Park each night. Voted #5 in the Top 10 Amusement Parks in America!
    Daily Passes to Family Kingdom Oceanfront Water Park. Myrtle Beach’s only oceanfront Water Park.
    Daily Passes to Sea Mist’s largest Resort Water Park with the Mississippi of lazy rivers in Myrtle Beach and a 3-story high tubular slide.
    Unlimited play on Misty Fall’s resort putt-putt. A double-nine course.
    A Welcome Cocktail at Sea Mist’s Grille & Tavern.
    One 5 x 7 Souvenir Family Photo (One per family.)
    Stay 4 nights or more and receive:
    One (1) Breakfast Buffet at Tena's a 46-item buffet, for each person in the family
    A Free Dinner* for one (1) person at Sea Mist’s Grille & Tavern.

    Their rate, for 4, for the week with all of that above was this:

    Ocean Front (located directly on the beach front with direct view of the ocean.)
    7 Nights $1,214

    The only thing that will be closed is the Family Kingdom Water park, but the hotels on site water park (lazy river and water slide) will still be open as well as all 9 or 10 of their pools. The Family Kingdom Amusement Park will be open and it has a lot of rides for little kids!

    (And that price was for June. September is much cheaper.) Anyway, hope it gives you another option in the pile! :)

    God bless you, your family, and special blessings to precious Keegan. (BTW, I follow you on your Facebook page!)

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