Wednesday, April 1, 2009

Tough Day

I can't really tell you all how frustrating today has been. All optimism left me hours ago, and I guess I'm just downright tired, grumpy, and discouraged.

Here was our day:
8am Arrived at Sloan at which time we were supposed to start giving Brady contrast to drink for his CAT scan
8:00-9:30 Waiting
9:30 Finally got contrast, Brady wouldn't drink it. They had to put a tube down his nose into his stomach and put in all 8 oz of contrast/juice. Then pulled tube out.
9:30-11:30 We were told the scan would be delayed because you have to wait 2 hours after contrast. We also learned that because the scan was delayed, that we wouldn't be able to meet with Dr. Laquaglia today because he needed the scan first, and he was headed to surgery.
12:00 Finally had the scan. It lasted about 15 minutes. Brady woke up really well and was starving. Keep in mind he hadn't had any food all day.
12:00-4:30 We waited for 4 1/2 hours to meet with the oncologist (Dr. Kramer) and the neurosurgeon.
4:30 Met with Dr. Kramer (the oncologist). We have waited weeks for this appointment. It lasted about 10 minutes. Brady was tired, we were tired, Brady was grouchy. She basically told us that with his type/stage of tumor that it would be treated with surgery. We felt rushed, didn't have time to ask a lot of questions, and honestly were really let down about this meeting. She was very nice though...She ordered a 24 hour urine collection. They put a urine bag with a huge tube/bag attached to collect Brady's urine until tomorrow morning. He was VERY upset/tired...still no nap.
5:00 We met with Dr. Bilsky the neurosurgeon. He told us that he WOULD NOT be participating in the surgery to remove the part of the tumor left in the spine. He explained that because Dr. Laquaglia's part of the surgery will be very long/involved (removing the large tumor in Brady's chest) and because he will be going in from the front, that to have to flip Brady and go in to remove the spinal part would be too much surgery at this point. This was a big let down for us. This means we will not get the full-resection that we hoped for. Brady will come home with that part of the tumor in his spine. We aren't sure if they will just leave that part and watch it, or if they will test what is taken out of his chest and then determine if it is aggressive enough to warrant going back in.

6:30 pm Back to the Ronald where Brady promptly had diarrhea and we had to take off the urine bag...so once again we won't have his HVA VMA levels. We had pizza in the basement with many of the other families. There are so many people here, so many children suffering. I'm not sure if I will ever be able to fully describe how hard it is to see what we are seeing here...please be praying for all of these families.

So, today we accomplished a CAT scan and two brief meetings in 9 hours. Matt and I are discouraged I guess and maybe had too high of expectations about today. We are meeting with Dr. L at 9am(I'll believe it when I see it) and a neurologist at 10am to assess Brady's motor skills right now.

Brady was a very good boy considering. He wore his bunny ears throughout the day and of course everyone thought he was adorable. Our flight home tomorrow is in the early evening which will put us home kind of late. I will try and update tomorrow after our appts, but we are hoping to do a carriage ride in Central Park before we go.

Pray for me to have restored optimism...His joy comes in the morning!

17 comments:

  1. Hi Meg,

    Sorry the day was so frustrating. I'm glad to hear Brady fared well. That's a blessing. Hopefully tomorrow will be a better, more productive day. Try not be discouraged. Keep believing for good things. There is power in that. I'm praying for you guys.

    Rosalie

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  2. Thinking of you and your little one as you go into the next phase of treatment. I am from Roanoke VA not to far from where you went to school. will keep your family in my prayer.

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  3. Hi Guys,

    Don't be discouraged! Think of all that God has done to get you where you are in this journey! Trust that he will not fail you at this point. Keep leaning, our God is almighty and STRONG enough!!

    Hugs,
    Robin

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  4. Ok, so not the day you were exactly hoping for but you did get a lot accomplished and had a sweet bunny eared boy with you!

    It must of been very frustrating to wait all those hours and then feel rushed and unable to ask all your questions. I am sure that you are learning that in all of this hospital/insurance mumbo jumbo that you are Brady's advocate! Keep your head high, you are doing a GREAT job!

    You have gotten through today and tomorrow anything is possible!! The Lord is with you, lean on Him, He will carry you and give you strength!

    Praying for you!

    Have fun on the carriage ride!!

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  5. please tell me this is an awful april fools joke, that is not very funny at all! i wish i could do something for you and i'm upset b/c we prayed hard for you today.

    we need to trust and believe though that b/c they handle this stuff all of the time that doing only the one surgery is wise for a reason. and you know that in your heart of hearts as a mommy that even though you are terribly frustrated right now that you would go 100 times to nyc till every bit of cancer was removed!

    don't let the devil steal your hope, joy, or faith. he comes to kill, steal and destroy. God doesnt bring frustration but what He will do is use all of it for good b/c you love the Lord! When things look bleak and you feel alone in this, you and Matt have each other to hold through the night and a beautiful little boy who has really been a trooper from the beginning.

    In your weakness He is strong. We love you guys, and hurt when you hurt, i wish you were spared this whole ordeal.

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  6. Hi, Megan--I'm another NB mom who has been to NY. I'm sorry you had such a long, disappointing day. Do trust Dr. Kramer with only treating Brady with surgery. This tumor becomes resistant to chemo very quickly, so you want to save the high dose chemo in case he needs it in the future. God willing, Brady will be on the good side of the medium risk statistics, and surgery will be all it will take! I'm praying for a better day tomorrow! With much love and support from St. Louis,
    Kelly McCord

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  7. I'm so sorry it was a tough day. I wish it had gone better. You know, you would think they would be more helpful getting you through everything knowing you have a small child who has not eaten, and for goodness sakes, children are hard to keep entertained for so long. And I wish all of the meetings were more encouraging.

    I'm lifting you all up in prayer. For Brady's complete healing, for your family's strength and comfort, and may God guide the doctors in completely removing all of the cancer. What a blessing it is to know God is fully in control.

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  8. Poor you. I'm praying for you and your family and hope things soon start to change for the better for you all. Hugs to Brady from the UK. xx

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  9. I'm so sorry for your frustrating day. I have to say however, that's how things have always gone for us there. There's a lot of waiting around because they are soo busy, so now I just expect to spend the day waiting in the playroom and don't get as frustrated. Hopefully you'll get a lot answered during your meeting with Dr. L. One step at a time. Hoping for a better day tomorrow. Take care. Laura Mortensen www.caringbridge.org/visit/jakmortensen

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  10. Oh, Megan...what a day! You certainly have extra prayers with you all today. I hope that you can fit in the carriage ride; it would be a much-needed treat.
    Anne

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  11. Hi Megan,
    I can feel your disappointment and frustration through your words! Hugs for you!

    This verse came to mind as I was reading... I hope it gives you encouragement...

    Isaiah 43:2
    "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."

    Remember that He is with you. You are never without hope because you are never without Him!

    Love,
    Steph D.

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  12. Wow, Megan,
    What a day. My prayers are there with you and all those other families you mentioned.
    Love ya,
    Joce

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  13. Wow, Meg,
    What a day. My prayers are with you and all those other families you mentioned. For Thursday, "This is the day that the Lord has made, let us rejoice and be glad in it."
    XOXO
    Joce

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  14. We're praying and praying. Keep your head up - you didn't come this far for nothing. Don't lose hope and keep remembering the good things. The world is holding Brady in their hearts right now...you're not alone.

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  15. I'm sorry dear, we put so much hope and though into how "we" think the appointments should go and then they dont. It is so frustrating, I felt that way with the neurologist appt. Waitined and waited then it lasted like 10 minutes. I wasnt to yell and tell him to give US some time!! But you can't JUST BREATH... Today is a new day and it can only be better. I hope you get to take that ride in the park. That will make everyone feel better. Kiss Bunny Brady!! I will email you later tonight when I get back to Ronald. Smile!!!!

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  16. Dear Megan and Matt,
    I read your blog regularly and have been keeping this trip in my prayers. I am praying that you are strengthened and encouraged. I am praying that God gives you detailed directions as far as how is the best way to proceed for Brady.

    Much love and prayers!

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