ROSS:
I want to start off by thanking my mom's wonderful book club for holding their meeting in mom's room last night. She had a great time. There is a new project we will be starting soon in the waiting room that will be headed up by mom's friend Zelda. We will be folding 1000 origami cranes! According to wikipedia, "An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury." More to come on this...Today we were given some news that is very hard to swallow. The neurologist seems to believe mom is facing an autoimmune attack. Basically, the immune system fights off cancer cells in the body, however, the cancer cells can look similar to the healthy cells of the nervous system. When this occurs, the immune system can start attacking the nervous system. He is attributing this to her loss of vision, acute numbness near her feet and ankles, and poor reflexes. In short, he is not expecting her vision to return. He said there is very little that can be done to treat this. One possibility he mentioned is an IVIG, which stands for intravenous immunoglobulins. He said this is effective in roughly 10% of people given this treatment, and not only that, it can cause kidney failure, heart attack, and other horrific conditions. Doctors are also unsure about how it even works on the people it does help. So, we're going to go ahead and pass on that...
As you can imagine, this was a very difficult conversation to have with this doctor, and it definitely took a toll on all of us. When the doctor left, I asked my mom what she thought, "well," she said somberly, "this puts a crinkle on things."
It is important to understand that, as of now, it is only speculation that this autoimmune attack is actually taking place. Both Aynsley and I are not convinced her vision is lost for good. We're by no means doctors, but still, we have heard multiple stories of friends who were told by doctors they would never see again, and I'll have you know, they're sight came back. What I told my mom is that everything we're hoping for is against the odds, but that doesn't mean our hopes are not possible. We have many things going for us that western medicine, and even science for that matter, cannot account for. We have so much love and so much support, and these things matter; they make a huge difference. For now though, mom is disheartened. This news was a major blow to her.
When I talked to Aynsley on the phone today she made a very good point, that it is okay for mom to get upset, she has every right to be discouraged. If it were me, I would have felt these emotions a long time ago. Feeling down or upset will be a good release for her, and soon, she will be able to return to focussing on healing. And heal she will. Our hope is every cell.
In some brighter news, I am sleeping at the hospital tonight. Just me, my dad, my mom and her commode... who could ask for a better slumber party?
Kirshenbaum family, although the news of no vision is a bit disheartening, I will keep praying and requesting others to pray for Flynne. I've said this before and I'll say it again. You guys are SO strong and I know with all the prayers and positive thoughts, something good is bound to come your way! I will try my very best (if the snow disappears) to stop by over the next couple of days to drop off a "feel better" cd for Flynne. Although I haven't made a paper crane in a very very long time, I would be more than willing to help out! It sounds like an awesome idea!! Please keep holding on to those positive words and know that all 4 of you are an inspiration! <3
ReplyDeleteJessica B
I would like to echo Jessica B's comments. I hear this news but that doesn't mean that all of us who love you all won't keep hoping and praying that Flynne will prove them wrong. I said your Mom has always been a fighter - THAT will not change.
ReplyDeleteI wish we were all there to help with the origami cranes - know that we are there in spirit - and having ME there IN PERSON would probably only unnerve all of you anyway......
My promise is that we will continue to think about you all and pray for good things. The strength shown by the four of you has been an inspiration in every way. I hope today is a good day.
Please give my friend a kiss for me.
Love, Mark
Dear Flynne and family: You did not need this news about an autoimmune attack--you must be reeling. It is too, too much. But please Flynne keep fighting--there is so much unknown about autoimmune attacks. Hope remains--you have so much spiritual and physical strength, and are so surrounded by love, you will conquer this too. We are praying to every deity and sending all healing thoughts to you non-stop. Much much love, Suzanne
ReplyDeleteSO HOW IN HECK DOES ONE MAKE AN ORIGAMI CRANE? AND MIGHT I SUGGEST THAT YOU ASK FOR AN ADDITIONAL ROOM AT THE HOSPITAL FOR ALL THE CRANES.
ReplyDeleteBUMMER NEWS BUT JUST REMEMBER.'.WE SHALL OVERCOME.' WE ARE ALL PRAYING FOR YOU. HANG IN THER EVERYBODY.
SENDING LOTS OF LOVE YOUR WAY...HUG EACH OTHER FOR ME.
JANET
yes, this news is disheartening. I am sorry to hear this. But remember, doctors are only "practicing" medicine. They don't know everything. There are many unsolved mysteries no one understands.
ReplyDeleteWe are all rooting for you, sending healing thoughts and prayers. I know sometimes it's hard to be strong but please try.
we love you very much.
hoping for a good nights sleep and sweet dreams.
Love,
Jodi
this is definitely not news that anyone wanted to hear, but you are right to not give up hope.
ReplyDeleteplease let me know if i can send some paper cranes from san diego (and where i can send them to)! when i was a long-term substitute in a 4th grade class, we all folded 1,000 paper cranes after reading "sadako and the thousand paper cranes".... so i've had some practice. :) perhaps i can even recruit a few of my friends down here to help me.
love,
erin
xo