Over the weekend, we have been working with Dana Farber to try to tweak Sammy's medication. The steroids are making her miserable but they are great for pain relief. She left the hospital last month on a very high dose so the weekend goal was to wean her off a little bit. It's been pretty tricky for many reasons and really no benefit was seen from getting Sammy off of those 4 milligrams, anyway.
So, we'll scrap the medication thing for now while the doctors do their thing at Dana Farber to brainstorm. Tomorrow Sammy's doctor will meet with the head of neuro-oncology to discuss an antiangiogenic med that the neuro docs have used successfully in lieu of steroids. The bone docs are nervous because no one wants Sammy to have any pain so all recommendations and decisions are made with extreme caution.
Thankfully pain continues to be well managed. Sammy's biggest hurdle is the fatigue, dizziness, blurred vision. She also started complaining of knee pain over the weekend. The knee area does look swollen. We are all very upset and worried as this sort of pain brings us right back to 7/06.
Despite the setbacks over the weekend, there were some pretty good times, too. A lot of time was spent at "You're Fired" making beautiful, intricate ceramics ;) for upcoming celebrations. The girls and I met our cousins for dinner on Saturday night at a Japanese steakhouse in Nashua and we all had a wonderful time.
Middle of the night discussions about heaven happen from time to time. Sammy wants to read a book I read, 90 Minutes in Heaven. She and I chuckled about the fact that most children read the Maria Shriver book or books about pet heaven. Sammy is looking for the FACTS and only the facts. She does not want to read the sugar coated children's illustrated book stuff. So, if any of you readers have any suggestions about other literature, please send me an email.
This morning the VNA will come to visit; then we are waiting to hear about whether Sammy will have CT scans later today in Waltham or on Tuesday in Boston. Sammy's appointment at Dana Farber has been rescheduled to Tuesday.
I think that's it for now. We know how much everyone continues to think of us and we truly appreciate it. The meals have been so wonderful, too. THANK YOU all for your ongoing love and support.
Shari and David
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14 comments:
Sammy,
You are in fact the most wonderful and perfect young lady I know. You have a strength about you that blows my mind. I am praying for you and I hope all is figured out soon so you can continue to enjoy daily things normally. Shari, I will look around for books and let you know what I find out. I love you guys and hope the doctors come to a decision soon to help Sammy. I hope Becca is doing well I think of her all the time, I love her and Dave too, send them my best.
Love,
Ashley
Hi Rotman Crew,
I read 90 minutes in Heaven, as well. It's a good one. I'll try and think of some others, too. My most recent favorite, and is about 8th grade level, is "Elsewhere" by Gabrielle Zevin. It's about a pre-teen age girl, who dies, and goes to "Elsewhere" which is her idea of heaven. She lives in Elsewhere with her grandmother, and tries to figure out how to make a new "life" there in heaven, while missing your old life here on Earth. Shari-I did really like it, it has a strong message- life in Elsewhere is not always easy, but as we know, life here is not always easy either, now,is it?
Know that we love you all, and think of you more than a million times a day. You are all doing such a great job, doing all that you can do. Some days, that feels better than others.
Love you...
Becky and the Forrestalls
Shari, I found this at our library, it's the second book from the man who wrote 90 Minutes in Heaven...
Title: Heaven is real: lessons on earthly joy-
- from the man who spent 90 minutes in heaven / Don Piper and Cecil Murphey.
Author:
Piper, Don, 1950-
ISBN:
0425215555 9780425215555
Review:
Piper, well-known for his Christian bestseller 90 Minutes in Heaven, with over 1.4 million copies in print, takes his dramatic story one step further by describing the lessons he's learned since he died on a bridge in Texas in 1989. Piper didn't stay dead, but instead returned from the gates of heaven a changed man. I left the bridge different than I had been when I started across, he says. Piper uses the bridge metaphor throughout, describing his salvation as the first bridge he crossed, then the traversal of another bridge to a new normal after accepting that his life was forever altered. Other journeys discussed include the bridge to compassion and the final bridge to heaven (for good this time). Undergirded with e-mails and letters from people who have read his book or heard him speak, Piper also leans heavily on the example of the Apostle Paul and the New Testament book of Philippians. Although the messages can be repetitive and the writing uninspired, Piper's story is astounding and his life lessons are real: focus on the eternal, find the humor, accept help, give thanks and just hold on. (Aug. 7)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
I liked the Mitch Albom book, The 5 people you meet in Heaven, mostly because it gives some perspective as to our purpose on earth and our connection to others.
Dear Sammy,
I really miss you at school and at home. Me, Annika, and Mel want you back so much! I hope you like your teacher and the kids in your class. I miss you so much. I look forward to seeing you this year! Love,Kristen
Hey Sammy, Becca, Shari and David, We don't have any words of wisdom, just words of love to all of you. I think you've got the right treatment combination: Dana Farber, amusement parks and hot dogs. Sounds good to us. We love you all and think of you with smiles and hugs.
From your friends down in "southern New England," Andrew, Debbi, Milo, Logan and Eli
...just to let you know that we check in to the blog everyday to see what is new with all of you...we send our love and lots of postitive vibes your way...lots of love from your texas (well, transplanted boston) cousins...amy, paul and maxi booboo
Hi thinking of you four and sending lots of love and positve energy your way. We think of you all constantly and keep up with your blogs. Will be having dinner with your grandpa Charles tomorrow as we are heading to the Vineyard for a wedding. Will catch a Sox game Wed and root hard for them to regain first place and will be rooting hard for you all as always. Sdending much love Your Maryland cousins, Francie, Stuart Jonathan and Jennifer
Sammy,
You are the most amazing person i have ever met. Your courage and strength is so admirable. If only everyone could have your courage and strength. Your whole family is such a role model to me and i think about you all daily and your always in my prayers!
i love you sammy!
Your big sister,
Erica
P.S. Shari your writing is fantastic!
Rotman Crew,
I also read the book The Five People You Meet In Heaven. I found the book meaningful and thought provoking. It has made me much more conscious of every interaction with people, as you never know how what you have done touches other people.
Thinking of you, Marti Lawton
Sammy,
You are in our hopes, thoughts and prayers. Hope you have a ROCK'N week!!!
<3333,
Emma G.
Sammy and the Rotman Crew:
Just want you to know you're in my daily thoughts and prayers.
Shari, "The Five People You Meet In Heaven" is also available on DVD... I did not read the book, so I cannot compare the translation to the movie, but thought I would let you know.
Lots of love and prayers coming your way...
Mike Williams
Hi rotmans!!! you guys are always in our thoughts and prayers. i miss you guys when i dont see your family. you guys are such good friends. hope to hear from u again. XOXOXO love sarah lane
Sammy-
You are one of the most amazing people I know. I love you like a sister and that love has no limit in this world. You are such a good dancer, actress, and you have an outstanding voice. You've got the potential to be famous and if that's your dream then go for it. However, not only are you extremely talented you are also one of the nicest people I know. You can make anyone smile...even if they are having the most terrible day. You can light up a room with your gorgeous smile and personality the second you walk in. You are gorgeous sweetie but that's only a bonus. What matters most is that you have such a kinda heart and you really know how to have fun. I had the best time with you at the fair and going on that crazy ride and singing together...it was a total blast. I love you sooooooo much and I always will.
Love always,
Jourdan (sis)
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