Wednesday, March 14, 2012

Day 3

Today was absolutely exhausting. I honestly feel as if I could collapse.  What a productive day though!  This day was totally about Tasia and her surgery.  First we met with a pediatric GI. Wow. Dr. Shwartzenburg is amazing. She is so knowledgeable! She gave us more info and helped us more in an hour than we've gotten in 8 years.  She LISTENED - that was amazing.  She was more knowledgeable that me! I know that sounds cocky of me to say but you'd be shocked at how many docs know very little about this rare disease.  And then mention this very large surgery and then you really get some shocked looks.

We met Dr. C, Tasia's surgeon, and he was great!  He was very, very knowledgeable, confident and even funny.  We really liked him.  This appointment was basically a different version of the same consult we had for Isaac. Not really any new news but his thoughts and reasons on why this is needed for Tasia and why she is most definitely a candidate for this surgery.

We met with a nutritionist and one of our favorites, Dr. Bellin, the endocrinologist.  We found out that Tasia's blood sugar and C Peptide test looked so far so good!  She explained diabetes (which Tasia has a good chance of not getting) and the transplant side of the surgery. We were surprised to find out that she and Isaac can eat ANYTHING they want and just have to take the right dosage of insulin to carbs!  We had been under the impression that diabetes would be so much harder.  Holla! I explained that I was worried about Tasia's very strong dislike for needles and she even brought in diabetic testing supplies and let me stick myself in my belly to see that the needles don't even hurt.  Isaac - did it too and was very surprised to find that it didn't hurt. We both almost stuck ourselves 2x by accident because it was such an easy painless stick that we didn't know if the needle had gone in yet.  She gave us a blood sugar monitor and I did that too.  That part wasn't fun but wasn't too bad either. Isaac didn't do the finger prick. Wimp. Ha ha. He's gonna say, "I've done this and I already know how it feels." But I don't buy it. Wimp. Hee hee. (I'm kidding of course.)

Tasia did start having episode during her appointments. Poor baby - they got her some very strong pain meds and she is currently feeling pretty good. We are hoping it runs it course and she can avoid the hospital.

This update sounds incredibly dull but it's because I'm so very tired. I can hardly sit here and keep my eyes open.  I don't like writing while I feel so wiped out but I know there's a bunch of you wanting to know what we found out.

Basically it all boils down to this....

Tasia does in fact need her pancreas out. She needs it out sooner than later.  All that is happening is continued damage to her pancreas. Every attack means less islet cells.  The sooner we do it, the more likely she is to be insuline free. Cancer is not a worry at this point for her... those chances start when she gets closer to adulthood. But 18 years old will be here before we know it.  The amount of pain she suffers on a daily basis is another reason to get it out.

The facts are this - due to having the PRSS1 gene she is almost guaranteed to have cancer and become diabetic within her lifetime. This surgery virtually eliminates the cancer and the younger she does the surgery the better chance she has of dodging diabetes. Doesn't that sound like good reasons? Not to mention the fact that she can have a childhood free of pain! That to me is priceless!  This surgery goes sooo much better for people who are not chronically on narcotics and she is not there at this point. We don't want her to get to that point either.  She is at a very good place in her life for this surgery right now.

We also have been concerned for years about her having babies someday and this gene passing on to our future grandchildren.  Well Dr S said they are developing a gene therapy that can be given to newborn - age 1 children to completely PREVENT this disease!!! Tears!!! This was such good news that I had to call my friend Whitney and personally tell her as this is so dear to our hearts.

There is currently nothing going on in medicine that would remove pain, save islets and prevent cancer. This is our only option other than leaving it all up to chance. We don't want to gamble with our child and her quality of life.

So now the question that is heavily on our hearts is - WHEN?  Obviously we cannot do two very, very major surgeries at one time. I am only one person and need to be with both during this tough time.  We also don't want Tasia to miss out on a ton of school and have to repeat a grade. We both have full time jobs and we very much need these jobs.  In and of ourselves we don't know when to do this. We need some serious prayer to figure this one out. I know the HE knows what is right and we need to fall in line with His plan.

I know there is a TON more that I am forgetting to tell you but I am so tired and at least I got out the most important part.  All doctors we have seen all agree that surgery is a must for Tasia. We feel in our hearts this is the right thing.

Will you please agree with us that we will know the right time to schedule this surgery for both her and Isaac?

I will update more tomorrow as it comes back to my memory.


PS - Soon, I have a message to all families suffering with this disease - the genetic kind specifically.  I am willing to be completely honest and say the tough stuff that we all need to stare in the face.  David beat Goliath because he knew exactly what he was facing.  You need to truly know this beast to beat it.  I don't know if I will write this as a blog or send this out as an email but I feel that we need to know this stuff to protect ALL of our children.