Saturday, February 7, 2009

Turn up the prayers!

It is early in the morning, I do not feel well, and I cannot sleep. My cold makes it hard to get comfortable, my mind whirs with each toss and turn. While things have been going great, a bit of doubt and fear begin to seep into my mind as I become more awake. The "what-ifs" suddenly come on full-force and I find myself at the computer trying to eradicate the demons in my head.

Things have been going so well, what brings on this onslaught of fear? I think a combination of actually getting an "admit" date for Lisa and some inconclusive information on Maranda may have been the culprits.

They have scheduled this Wed 2/12 as admit date for Lisa. While we know the routine and are familiar with the setup, the reality comes rushing in that, as one source stated, "bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. "

Great...I'm the person who is puke-phobic...yet, for the greater good, I must subject my daughter to this treatment. I'm not a fool, I know there really isn't another option, but in the wee hours of the morning this realization just makes me want to pack up and run away to a hidden island filled with sun, sand and peaceful thoughts (alright, so those of you who know me, know what island it is, so I guess it's not so hidden!).

I guess these next few days will be spent enjoying our last few moments of freedom. They say once we get started, Lisa will be there for a 3-4 weeks if all goes well. I know a lot of you are out there cheering for us and praying and I ask that you throw a few extra prayers our way these next few weeks. There are so many complications that can occur with this treatment that it is really going to be prayer and hope that gets Lisa and the rest of us through. Honestly, if we are out of Motts in 3-4 weeks...I would say we all have witnessed a miracle...so let's hope for that!

The other place we could use a few extra prayers is for Maranda. While her surgery went well, we now find that we are in a situation where there is no real medical data to support what next steps are. Bracing is what the doctor is recommending, however, there is no evidence that this will help, and the few studies that have been done indicate that most children with this condition will end up having spinal fusion regardless of if they wear a brace or not. Here are some summaries from studies:

"There are those who feel that braces are not indicated for the treatment of scoliosis associated with syringomyelia. I would say that although the success rate is lower, until a large series of patients is studied closely and the long term results are published, it is still probably a wise conservative approach to use a brace in an attempt to arrest the progression of the curvature. "

"In conclusion, since the number of cases of patients with scoliosis associated with syringomyelia is small, no hard evidence exists to completely support any recommendations concerning management. "

"It is clear that this disease is rare enough that definitive recommendations cannot be made until multi-center studies are used to accumulate enough data to produce reliable statistics concerning the benefit of various treatments. Until then, each patient and their physicians will continue to make their decisions based on careful counseling in light of the scant information available"

Mike and I are split on "get a brace" decision. Mike feels it wouldn't hurt, so we might as well try it. I feel "it's not proven to help and making Maranda wear it 24 hours/day for the next 3-4 years seems a bit ridiculous if odds are she is still going to have a surgery". Maranda, of course, doesn't know what she feels.

I get a strong feeling that the doctor recommends it just so we feel like we are doing something. Her words were "Parents like to know they've tried everything, that way if surgery does need to occur they are not second-guessing themselves". That still doesn't convince me that bracing is the best next step. I continue to try and gather as much info on this as possible so we can make an informed decision. Maranda will be getting a back xray soon and we are scheduled to meet with doc on 2/23. I'm also talking with my chiropractor and physical therapist to get their thoughts on the issue.

Ok...I'm sure this blog is way too long...but now at least I feel I can go back to sleep.

Thanks for reading and keep on praying!

P.S. Feel free to say a few extra prayers for Thomas and Christina...they certainly have gotten the short end of the stick lately!

6 comments:

Anonymous said...

Sending warm, comforting, loving thoughts to you all. Your wisdom in gathering information and considering all aspects will help guide you in next steps as will your loving family. I am so glad that you have each other.
Doubt, worry, debating, and ruminating on decisions while sometimes painful and other time just plain annoying and frustrating I believe are just a part of human nature helping us to think through difficult decisions. I'm glad that you can honor it by writing and sharing and talking.

Love,
Pam

Anonymous said...

Linda,

Thank you for your thoughts. Sometimes when you write them out your decisions become easier. Continue to do research, talk with other parents who have gone through this and most of all go with your instincts, they are never wrong!

Lots of prayers coming your way!

Sarah Rumptz

Anonymous said...

Tou will continue to be in our thoughts and prayers, especially over the next few weeks.

McCann Family

Diane Ebeling said...

We will be sending some extra positive energy Lisa's way!! Will she be able to have visitors?

Linda, do as much research as possible on Maranda's issue, then go with what your "Mom's intuition" tells you. You will always be second guessing yourself - but I truly believe that a Mom knows what is best for her children deep down. Go with gut!!

Diane

Anonymous said...

Well I agree with you on the whole Maranda thing. I mean, what is the brace really gonna do? Keep her away from doing the things she loves? I will keep all of you in my prayers, and I hope you feel better!
With love and hope,
Alisa Crites

Anonymous said...

Wow,
So much to take in and decide,but I know that god will be your guide and you will make the right choices for your angels. I am praying that the lord will do great miracles for both Lisa and Miranda. I am in awe of your strenght and grace and courage that you show me each time I check in. I am praying and praying and will pray more. I still belive that god can do something miraclous.... I pray your cold gets better.... and for all of you in the weeks ahead...Love, Kristen McIntyre