Saturday, January 1, 2011

The official Diagnosis




Well, although I still don't know a lot, I now know much more about leukemia than I ever wanted to. Most of Carter's initial test have come back and the team of doctors working on him have made their official diagnosis: Acute lymphoblastic leukemia (ALL). This is the most common type of leukemia in young children. So now that the doctors have a pretty good idea what they're dealing with, the treatment has begun. Yesterday he received two blood transfusions, was put under anesthesia for a lumbar puncture to check if there's any cancer in his brain or spinal cord, a bone marrow biopsy and a more permanent IV line was put in place (a PCC) which he will still have in when he comes home (hopefully middle of next week). At the time of the lumbar puncture, they also gave him his first dose of chemotherapy in his spinal fluid. This morning, he officially begins his first round of chemotherapy. Last night, the doctors came in and explained the five different drugs used for chemotherapy which he will be receiving and all their side effects. One of the medicines in particular has some pretty intense side effects and this is the one he gets twice a day for 29 days. We will be in charge of giving him this one at home. It can dramatically change his personality and eating habits. His immune system will be very weak.
On a happier note, they have a great play room just down the hall from Carter's room. We've been having a lot of fun playing games and painting with him in there. His spirits are high right now and he's melting our hearts. He is such a sweet boy and is being a real trooper through all the poking and prodding that's been going on. Dennison has this on video on his phone but we can't figure out how to upload it right now, but yesterday, the nurse came in a did something with a machine but didn't touch or even talk to Carter before she left again. Carter looked at Dennison (I was home with Vienna at the time) and said, "she didn't even do anything to me!" Then Dennison got out his phone and was recording him and said, "remember when that nurse came in a she didn't do anything to you?" to which Carter said, "Yeah, maybe I'm not sick anymore!" If that doesn't tear your heart apart, I don't know what will.
Dennison has been at the hospital with him constantly. He's such an incredible father and there has always been a special bond between him and Carter. I've been trying to figure out where my time is best spent. The night we got the call from the doctor, our dear friends were over hanging out with us. They took Jude home with them that night and he's been staying with them ever since. I will be picking him up very soon, I miss that little guy! So my days so far have been spent at the hospital with Vienna and then we drive home at night since there's not much sleeping space in Carter's room. My parents will be here this afternoon and I'm excited to take Jude to see his brother. It's really difficult because I want to be at the hospital every second but I still have two other children to take care of. And I know Dennison has things under control there. It feels like no matter where I am, I'm feeling a little guilty for not being somewhere else. But I try to remind myself that I cannot be in two places at once, so just take it an hour at a time and throw myself into whatever task is at hand.
Thank you for all your thoughts and prayers and kind words. We feel the love and support from you all and really appreciate it.

14 comments:

  1. Thanks so much for the up-date. I woke up this morning wondering if all the news was a bad dream. My thoughts are on your family so often, its good to know a little more what is going on. I know having your folks there will comfort you in ways that are so needed.
    Our family fast is on for tomorrow. We need to get his name in the temple too. Ill check to see if Timp is open today.
    Keep us posted. I hope its therapeutic to write things. Love you sweetie, and that brave little guy and and the brave tall man too. Wish we were there

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  2. Robin,
    My heart is so full of love for your family! I am so sorry you are all going through this. I agree with Aunt Connie that writing down your thoughts can be very therapeutic. Our family will be fasting and praying for yours. Our temples are closed till Tuesday but I will be calling then and adding you all to the prayer roll. We love you and and you are constantly in my thoughts. Thank you for keeping us updated.
    Brandi and Family

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  3. Thank you, Robin and Dennison! We sure love you and your sweet family, and have been thinking about you and praying for you since yesterday when we heard the awful news. But I can't help feeling grateful for medical expertise, which not only can detect these things, but also cure them in most cases!

    Keep smiling and laughing (you're so good at that!) I know you two are and will continue to be strong through all of this! And when you're not feeling so strong, remember how much you are loved, and how every one of your friends and family members would carry your load for you if we could.

    Sure love you guys! You will continue to be in our prayers! Take care!

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  4. Thank you so much for putting this blog together to keep us all updated. Carter and your sweet family are in our thoughts prayers. We love you and we will be fasting with the family for you all too. I wish there was a magic wand to wave and take it all away, but know that you have so much love, prayers, and support coming your way. Love, Jess

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  5. Chang- That boy has had a lot of experience fighting for what he wants with Jude so he is well prepared for this fight. I have been wishing all day that the distance between us was shorter so I could be there to help, love and support you and your family through this time of trial. Your family is in the thoughts and prayers of so many people right now, I love you all so much. Looking forward to all the good news I know will be coming soon. Much love -The Brahs Famliy

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  6. Robin, Thank you so much for taking the time to write this blog to keep us all updated. We too are thinking about you a lot and praying for you all. I think Rachel said it best, we'll be looking forward to hearing the good news too!

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  7. Carter, and your entire family, is in our thoughts and prayers. I pray for his healing and your continued strength as a mother, wife, woman. You can do this. He can do this. You will DO THIS.

    Blessings
    jo

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  8. I don't know you...was sent here by a friend....but know that I will carry you all in my heart and prayers...

    be strong.

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  9. We are praying for your sweet little boy and for everyone else in your family.

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  10. Robin!!! I didn't make it three words into this blog before the tears flowed! I am sitting here wishing I could do something for you and your family. You are an amazing mom & wife. You guys will be in my prayers and thoughts constantly! I can not even imagine how hard this is for you. I am so glad that your parents are coming up and you'll have them close. I know you are a strong girl and will make it thru this victorious.

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  11. wow,I too am so glad you are doing this blog! how I wish I could have known about this type of thing when we were dealing with keagans hospital stays...seems like all I ever did was talk on the phone to tell family and friends what was going and how it was going.....so exhausting! It is sooo good to be able to let everyone know like this and let you have a way to get out your feelings and thoughts it can be so good for you too! Our family is praying for you all and we also fasted for you guys today! We love and and want to help in anyway we can. Movies for Carter to watch or for you guys. We would be happy to let you borrow. Please feel free to give me a call anytime. With kids in school I have a lot of free time and would love to help. I sent a notebook for you in the blue bag I sent to the hospital with sister nicholson today. It has my number and a little note too. Dennison, the note can be for you too. Robin is lucky to be able to have you able to help so much. please let us help anyway we can. WE LOVE YOU GUYS!

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  13. We love you and you are constantly in our thoughts and prayers. When things settle down a bit we'll call you and see what we can help with:)

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  14. Dear sweet Robin and Dennison; you have occupied our thoughts and prayers almost constantly since we heard of this trial that you are having to go through. God only knows why we are given these tests, the ones that drive us to our knees; they are so hard, and one of the experiences that are part of your "refiners fire." Your faith and testimony will help see you through. Don't try to be too strong, let your feelings out and lean on your parents and close friends; they would take this away if possible, as would we all. Remember our love, prayers and faith are still streaming your way, We love you, Aunt Holly and Uncle Gene

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