We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Tuesday, May 29, 2007

Home from the Hospital...

We are home! Finally. Ellie spent last night in the hospital without TPN and she did not throw up at all. Lesson learned: Ellie does not take kindly to TPN. So we are back to what we already thought to be true... there's no real replacement for good old fashioned nutritious food - taken in through the mouth. This method just takes time. Time for Ellie to gradually increase her intake - it's the slow route to be sure, but still effective. Tonight she has already eaten more than she did on any given day in the hospital. It's so nice to see her feeling better.

Today Ellie had her set-up appointment for radiation. The set up process was to make a mold of her legs that will be used to hold her still during radiation. She then had CT scans done of her legs. They were supposed to do some small tatoos to mark the spots to irradiate, but when the doctor mentioned that, Ellie's eyebrows puckered together and she let out a little whimper. The doctor immediately held her hands up and said "it's ok, we'll do something else - we won't do the tatoos." I cracked up and said "wow, you didn't even wait for the full blown wail!" She just couldn't stand to do one more thing to make Ellie upset. I was so pleased... sometimes it's the little things that make a difference. Instead of tatoos, they marked on Ellie's legs with a sharpie and covered the markings with very strong, clear tape. (The marks have to last a week and a half.)

Thursday Ellie will begin radiation to the tibia of each leg. The treatments will be twice daily on Thursday, Friday, and Monday through Friday of next week (14 treatments in all). We are hoping that she will not suffer any painful side effects from this. The doctor had told us before that she is hesitent to do radiation to children's legs because of the growth plates, but we learned a little more today regarding that. The growth plates in Ellie's ankles will not be touched. If the plates in (or near ?) her knees are effected, it will limit the growth of her legs by somewhere between 1/2 to 1 inch. In the grand scheme of Ellie's overall growth it will not even be noticeable. One big plus is that the radiation will be identical to both of her legs, so having one leg grow longer than the other will not be an issue. But the hope is that the dosages of radiation given are low enough that her growth may not be effected at all. One possible side effect is painful fluid buildup in the knees. The doctor has seen this happen once in a child, so it is rare, but we have started listening when rare side effects are mentioned... then we brace for impact.

All in all we hope for a nice, easy week and a half! We try not to expect... but we hope. For now we are so glad to be back home in our comfy little room at the Ronald McDonald House. This place is such a blessing to us. It is a peaceful haven from the hustle and bustle, and at the end of a long day (or week) at the hosptial we are able to walk in the room and be... home.


At 12:42 AM, Blogger BreezieGirl said...

Many more prayers for radiation!! Glad to see y'all are back home!

At 5:21 AM, Blogger LindaSueBuhl said...

Your update gave real meaning to the phrase "home is where the heart is". Glad to hear about the eating improvement - delighted about the doctors' understanding in not permanently marking on Ellie! Isn't the "prom" coming up very soon? Looking forward to the new pictures.

At 6:46 AM, Blogger tricia said...

Hey there! I'm still alive...just been busy living. Wish you could have Bangled it up with us...that would have been so much fun! Hugs to you and my little sensitive kindred spirit!

At 7:10 AM, Anonymous Anonymous said...

so glad to hear ellie is out of the hospital and you are home. we pray that she will continue to eat and get stonger. we will be praying that hse will not get any side affects with the radiation. we pray Gods constant provisions and strentgh for all of you. love simons family

At 1:40 PM, Blogger c.g. said...


So pleased that you are out of the hospital and in your home away from home.

Also thankful for the understanding of the doctor regarding Ellie.

It is those gentle little blessings of kindness that help along a difficult road.

Continuing to hold you in our prayers.

At 3:53 PM, Blogger Sheila said...

Praying for everything to go super smooth throughout the radiation! :)

At 6:41 PM, Anonymous oneofhisfriends said...

Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth.
(3 John 2)

At 2:02 PM, Anonymous Anonymous said...

I feel like if I met you I could sit right down as old friends. You have shared your soul and your family and your struggles in such an intimate way. Thank you. My daughter Emily (15) and I have been 'keeping in touch' pretty regularly. I actually went to New Tribes in Jackson with Stan and Pat and have kept in touch with Ginger's mother-in-law Nancy Harris through the years. I've been reading Gracias Burnam's book "To Fly Again" and thought that might be a good read for you. It sort of reminds me of a book that might have your name on the fron cover someday! Our prayers are with you and yours. I'm sure you have no idea how many of us are out there. God is using your family in mighty way. Lynn

At 7:35 PM, Anonymous Kristina said...

We will be praying this radiation treatment goes smoothly! Eat lots of good food, Ellie :). I am so glad to hear you are comfortable in your home in New York!
Good night,
Kristina & Alexa


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