Sitting around with Evy in the hospital room, waiting for word it's ok that we head home until Monday when we will come back for surgery to implant chemo port and a spinal tap to look for floating tumors in her spinal cord. We can't leave until they test her levels of her seizure meds at 4 and proclaim that they are sufficient for discharge.
Then we will go home. Stella and Evy will be reunited for a short time... Stella has been so sweetly confused by all of this. The Northern VA Ronald McDonald House has been a refuge for us during this time. Stella has been able to see me about once a day, and she still gets to sleep next to dada and also enjoys playing with Grammy Pammy all day long. It will be interesting to see how Stell reacts to the healing scar on Evy's head... to Evy's lack of mobility.. but I think this will be so good for all of us. I did go ahead and find a place for our dog Misha through this (thanks to Jen and the army of FAHA volunteers at the ready!) On the one hand I know pets help lift spirits, but I am also afraid of our big boy knocking Evy over, as he has demonstrated in the past. Also, the idea of dealing with an energetic dog on top of everything is just too much. I hope the girls aren't too sad when we go home and "Mimi" isn't there.
So we'll go home. And if you know me at all you know I will be psychotically creating uber healthy vegan meals and my Vita Mix will be a-whirring with green smoothies. Gotta get this girl as strong as possible for our first round of chemo.
As for knowing the exact schedule and types of treatments, this is still up in the air... the Brain Tumor Consortium, which includes some of our doctors, will be working hard to come up with a treatment plan that is tailored to the most recent research and findings about fighting AT/RT. So for now all we know is that we're going home, getting some R & R and some bonding time, and then heading back up here to Fairfax Inova Hospital on Monday.
xoxo Jill
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Enjoy your babies at home, mama. May this provide a much needed break and a chance for your sweet Evy to regain some strength.
ReplyDeleteA friend of mine linked me here, and I want you to know that I will keep you and yours, especially Evy, in my prayers. Sending LOADS of healing thoughts your way! And Evy, keep up the fight! You are amazing.
ReplyDeleteMmmm. A whirling Vita-Mix to lift the spirits! Cancer fighting, strength restoring, mood enhancing good veggies. Izzy asked me to make sure Evy got some Pom juice in there too. It comes toddler-twin recommended!
ReplyDeleteI'm glad you'll get to be with both of them together in your own home. And Brian too.
ReplyDeleteJill, while I'm so sorry this is happening to your family, I'm so happy that Evy has you for a mommy. You're just fantastic and your energy and caring is going to go such a long way to bring her up.
ReplyDeleteMake sure you have your camera ready for their reunion:) Twins are so special and I am sure they will have their own very special reunion! I look forward to hearing how it goes:)
ReplyDeleteYou are all in my family's thoughts and prayers. I am sure it will be a comfort to be at home.
Andie
I hope you're all home by now, and sipping green smoothies! Pook, you can't imagine how much I want to be there with you, you're all I can think about. Brian and I (and Shea in her own little way) are sending all our love, thoughts, and prayers. xoxoxoxoxoxo
ReplyDeleteLove you,
Erry
love you, bud. thinking of you. glad you will be home soon.
ReplyDeletei heart evy and stella.
ReplyDeleteHi Jill--
ReplyDeleteLet me know what I can do! We're close enough that we can bring food to the hospital or bring Stella to a park to play for the day! Just let me know what you need.
Missy
Found your blog through MDC. I'm thinking of all of you. *hugs*
ReplyDeleteHave a rejuvenating weekend!
ReplyDeleteMichele
Sending you strength, prayers, grace, and all our most possitive thoughts.
ReplyDeleteHugs,
Erika
Much love and strength coming your way, Evy, Jill, Stella and Daddy!!!!
ReplyDeleteLove,
Subie
Jill, Brian and family, I am Jackie Woltjen's aide and she's been keeping us updated on sweet Evy. I can't even begin to imagine what you're all going through but I just wanted to say that my thoughts, prayers, wishes and all that good stuff go out to you and your sweet little angel. She's beautiful and obviously has a strength that only a few ever get to know. Hoping that you're all home and resting and just enjoying each other. Sending lots of love and healing vibes your way...
ReplyDeleteI'm Christine Seekamp's pastor and want you to know that we are all holding you all in our prayers here in New York.
ReplyDeleteJill & Brian: Good luck on Monday. Lots of hope and prayers, Margaret D.
ReplyDeleteIt must feel good to know that Evy's care is going forward. Jill, you're amazing! You and Brian are the best parents for your sweet girls. Hope you're home soon. Wish I could be there with you. Love and blessings, Marlene E.
ReplyDelete