Sunday, June 26, 2011

Day Four


This is James with his "menagerie" as I like to call it. His ever growing collection of soft, plush, and silky giraffes and monkeys- giraffes are growing into a theme of James'. He now has a giraffe blanket, a giraffe pacifier, his sophie the giraffe, a plush monkey, and his monkey lovey. No member of the menagerie is superfluous, and James is an equal opportunity chewer, thrower, and cuddler. He has the time to get to everyone, no one is left out. Ever since he's been little we've called him Jamesie the giraffe. Kara sings a little song with it. It's very cute. He has been in fine spirits today.

Today was our last day or relative calm. Tomorrow the second phase of our journey begins and James will have his first major battle with his tumor. We are confident in the doctors and the support staff here, and we feel good about our plan. While we're certainly nervous, anxious, and often overwhelmed, we feel like we've mapped our a plan and we're following it.

We had a difficult night. Part of the problem I suspect is that the cumulative effects of sleep deprivation are beginning to wear on Kara and I. The sleep we do get is restless, often interrupted, and rarely peaceful. Here's a picture of the "bed" that Kara and I have shared for the last four nights.

Ok so the bed is apparently at the top of the post. Picture it here. I'm not pausing to take the blogger tutorial.

You may have guessed, but the bed is not particularly comfortable. Last night we discovered that if you lift up the "cushions" to reveal some storage space you actually add approximately two inches to the total width of the bed. The difference was noticeable. In any case, although the floor is much less invasive than the PICU, the interruptions still almost always wake James up, which means it takes an hour or more to put him down. Last night, his heart rate dropped quite low in the middle of the night, prompting an EKG. The EKG showed nothing, so that's one less problem we have to worry about. The EKG set us back about 2 hours around 3:30. The staff is great, but no one likes waking up at 3:30 to get wires taped to them.

James is handling everything wonderfully, far better than we ever could have hoped. One gratifying thing today has been that his appetite returned in force. As he hasn't eaten in over a week, he really seems to be zeroing in on food, especially solids. This is a bit funny as James typically hates to eat and actively fights off spoons. Now he's excited and gets upset when you walk the food away from him. The downside of this is that once today James gorged himself and threw up- he was asleep and got woken up to check some vitals, and the combination of all that stimulus proved to be a little too much for him.

Kara and I did take the opportunity today to leave the hospital for a few hours. It was strange in many ways. Having been here so long and after everything life before seems distant, out of focus. We were surprised by how hot it was, even though logically we know that it's June in Dallas. We'd been dressing in jeans and sweatshirts. The hospital is cold. Driving was weird, it felt too fast. We went to lunch at Taco Diner. The food was good, but to me at least the atmosphere was weird. You feel strangely isolated, everyone is buzzing, fresh from church or somewhere else. The weekend is in full stride. I ordered queso when they came for drinks and got the check when they brought the food. It's hard to waste time now. We saw someone we went to college with who was praying for James. It was good to know that even in somewhere completely random like that, someone was thinking of and praying for James. We went home and took a nap, on a bed that felt like a pillow. I am glad we got out. We needed it. James needs us at our best, and we just can't do that if we're always here.

I know that we can't do this forever, both of us staying here all the time, but that's an issue we'll address after. We'll work out a schedule, we'll do something. Right now we both just want to be here, to take care of our boy until we know what his future looks like. I feel like every day we have less and less unknowns, our course becomes clearer.

As Kara discussed, we're now hoping that James' tumor is a blastoma, a less aggressive tumor and an easier variety to treat. Our doctor did the consent form for James' surgery- I know it's silly, but the fact that "death" was not listed as a complication somehow comforted me. The nurse offered brochures on each type of tumor James may have today and we turned them down. As we discussed earlier, there's no sense in worrying about what we can't control. Once we know which it is, we'll worry about that. Until then, worrying about both will not be helpful. This is strange for Kara and I- we're huge control freaks, micromanagers. Classic oldest children. One thing this experience has definitely proven is that any sense of control our actions might lead us to believe we have is purely illusory. As Kara said, all we can really control is ourselves and our reactions. Tomorrow will be the most difficult day of my life, but I am choosing to believe that it will also be the first day in my son's journey to beat his tumor, and to live the amazing life that I know he deserves. I look forward to one day telling him about all of this one day when he's older to let him know just how special he is, and how blessed I am to call him my son.

As always, thank all of you for your continued love and support. We could not do all of this without your thoughts and your prayers. We are grateful for everyone who has expressed such love for our son and for us.

7 comments:

  1. Our thoughts and prayers are with you guys today.

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  2. You guys don't know me, but I was led to your blog by a friend. This past April I went through something like what you are going through now. My 5 year old daughter was having very similar symptoms to your son. She was also able to tell us that she was having headaches and a stiff neck. After an MRI and a journey much like your first two days, we were diagnosed with hydrocephalus and a brain tumor in her cerebellum. We had an EVD and we had surgery to remove the tumor. Right now Kadence is a normal 5 year old girl who has to have an MRI every three months to make sure the tumor doesn't come back. I don't want to say that I know how you feel, but I wanted you to know that there is someone out here who has been in your shoes. It was the worst time of my life, but taught me that prayer is the most powerful thing in the world. It also reminded me of what is important in life. Please know that there are people praying for you and your adorable son that you have never met. If you ever need someone to lean on, who has been there before, please don't hesitate to email me. BDDAILY@prosper-isd.net
    Know that while it seems like the world has stopped turning and flipped upside down, it will get better. It may be different when you leave the hospital, and like us you may have to "visit" Children's more than you like in the future, but it will get better. Keep up the amazing work you are doing as parents, and lean on your friends and family when you need to.
    Lots of prayers and hugs,
    Bobbie Daily

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  3. Thoughts and prayers go out to sweet James and yourselves! I've never met you guys but saw a post a mutual friend put on Facebook. I've reached out to a few friends to put James on their prayer lists, so please update us with how things are going as well as how to specifically pray for James' needs as well as your own!!

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  4. just wanted you all to know that you are being covered in prayer by many!! praying for God to comfort and heal and bring you peace!! For His Glory! Allie

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  5. Ray: Thanks. It was a good day for prayers.

    Aubrey: I am so glad to hear that your little one is well. Our prayers for many more tumor free MRIs.

    Just: Thanks.

    Mustric: Thank you for reaching out to others on our behalf. We were very lucky with the amount of support we got.

    Glamorous: Thanks.

    Allie: Comfort and peace, above all.

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