WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, February 14, 2012

Deletions,Depletions,Replication,dysfunction, Respiratory Complex...

Very easy to be confused by the terminology, but more then that I am confused by this disease period.

If you are diagnosed with cancer there is a clear and precise process. 1)where is the cancer? 2)what type of cancer? 3)Staging 4)which treatments? I love the MD Anderson commercial where the woman talks about not having an expiration date on her body, very true that often it is impossible to predict outcomes..but, easier to predict an outcome with cancer then with Mito.

With Mito there is no book, no process and few guidelines. There are gobs of Drs. that either don't know what it is, don't believe it is real, or don't understand the huge variables.

Abby is lucky. Or has been lucky. Despite the various issues none were critical that forced a diagnosis over the years- it sure would have been helpful to know what was wrong with Abby all these years, but clearly it would not have changed the outcome of where we are at today.

Right now though, we feel like we are at one of the biggest crossroads in Abby's care we will potentially ever face. Like a Chess game that depending on each move could change the outcome for Abby 10 years from now. Each sip of an elemental formula, each prescription and test is one more move on the that medical chess board. I have never felt such pressure as I do today when it comes to making decisions for Abby's care. It was easier before we knew the diagnosis- we did what we had to find out what she had- okay, so it wasn't easy, but we had a very clear objective. So now we know. She has a Depletion. But, there are no guidelines, no set path, no process, each patient follows their own very different path. Some would argue that for all patients it is about energy, but that is way too vague to base any decisions on.

I have been consulting with my brilliant Mito Moms, her Drs., our friends and our family trying to decide "What is the next step?"

Clearly we need to know the condition of her stomach, and status of her GI issues- but since she has been eating better(admittedly not even close to ideal,but at least eating)I find myself wanting to plug my ears and say, "see, we are working into a bounce, nothing to worry about that a little more time won't fix." I think the term is "Denial" or is it? Because we don't know jack about Mito it is still very possible that her GI stuff may never get any worse from this day forward- but then again, because we don't know, it might and is assumed could get worse as well.

The Elecare is going okay- not perfect and I get the feeling though Abby's gut is kind of okay with it, her metabolic response is not looking promising. I know I really really need to quit looking at just today and try to look at year from now and today. Yet I don't have any percentiles,statics,no great "Mito" centers like cancer patients have, we would have to fly all over the Country to hear what I already know- which is there is simply no way to guess what we may or may not need to do for Abby.

A few years back we went to Oregon to visit my husbands family. His Dad took us to visit his Aunt who was dying from Huntingtons. She was a younger lady I think around 40-45? But what we saw was a skeleton barely clinging to life. They had put a feeding tube in the year before...at first I could not tell if she knew my husband but she seemed to recognize him. He went to hug her and she begged him to help her because she hurt.. she kept moaning about hurting.. That was her life.. for months and months.. never leaving that bed and just wanting help for the pain.

Now, I know that is not the path for Abby, but I have a number of family members I have watched slowly get eaten by cancer of one variety or another.. again, I know this isn't what is in store for Abby.. but the feeling of watching your life trickle through your fingers- that is sure the same, yet with Mito there is a possibility of an unexpected "bounce"..or at least a lengthy stabilization.. more questions then answers.

What is in store? A bounce? Stabilizing? Maybe a clinical trial that stops it? A tube? Life support? Maybe back to college? How do you plan for a disease like that?

My job as her Mom has been to give her the skills to plan her life, to give her the tools to create her path and find happiness. For me this has meant creating deep bonds in our immediate family, we depend on each other deeply. It has been about enforcing the importance of a higher education, and mostly that they find happiness. To feel strong about the decisions she makes for herself, to think before acting.. yet, here I am trying to face her disease with no facts, no stats, no tools, no skills to know how to wrestle and win. There are no tools for this...

Abby should not have to make any decisions yet- it is my job, but last night I found myself wishing someone else could do it. Or if we could just have another bounce that would hold her for about 10 years until maybe the Mito Specialists know enough to be able to provide a path and choices like that which are laid out for other diseases. I wish I could just trust a few Dr.s and have enough faith to let them decide when and what needs to be done. Unfortunately, Mito cuts none of us any slack. I suspect from now on our path has changed. For years the path was "Get the diagnosis" I thought it was the hardest thing I had ever done. Now I find myself on the second leg of the journey, which is "Pick a treatment"...and I just realized that this is as bad as the first part.

Today I am just pulling for a bounce- tomorrow is soon enough to plan the next move on chess board.


babyfoodsteps said...

Written from the heart ... my thoughts are with you and your husband and Abby as you navagate the next phase of this windy uncertain path they call MITO...

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