DAY 4 – SURPRISE!

Please see THIS POST to find out what has taken place today.  My husband said it all so well and I need to digest it all right now.  Plus my husband is leaving tomorrow morning I will very likely not see him again till JUNE. I need to be with my man.  More updates soon. I love you all and appreciate your prayers!


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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.

XOXOX,
Jillian

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.


News Story

This news story talks about the Islet transplant side if things.
Here’s a story of hope! Dr Bellin and Dr Chinnakolta are Tasias doctors!!! We meet with these two tomorrow. This makes me feel very confident and excited for the future. It’s a LOT bigger than the news makes it sound but still it’s exciting! 

DAY 2

Wow. I don’t even know where to begin….

When I woke up this morning I had, for the second morning, an overwhelming sense of dread.  I picked up the phone and texted a couple people who have been there for me through all of this and asked them for prayer.  I told them of how I needed some peace over this situation as I didn’t feel any at this point. 

I felt lost in a different world called Minnesota.  Don’t get me wrong, this is a great city and everyone is really nice but there was not a peace and I need peace.  After asking for prayer I sat down on the side of the tub and prayed myself. I told God that I had to KNOW this was the right thing and it all had to come together for me to feel right about any of this.  I prayed and then just expected Him to come through for me and then went about my morning.  We traveled to the other side of the river to the adult side of the hospital and started the whole Mixed Meal blood tests / C Peptide tests.  The whole situation was a mess. They were busy and we were dealing with lots and lots of different lab people and nobody seem to know what was going on.  A three hour test turned to a four hour test and we were almost ready to miss our appointment with Isaac’s surgeon.  I began thinking again of how I needed this to come together when from around the corner came our transplant coordinator Louise. Sweet Louise! As she moved around, she made everything fall into line. Just her presence made me feel better.  She told us of how much we were going to like Isaac’s doc and Tasia’s too!  She said that Tasia’s doctor is SUCH a hard worker that he made the news a while back for staying at the hospital for 4 days straight, refusing to leave his patient that was in need of a new liver. He didn’t leave until the boy had his liver! Thank you Lord – that’s the kind of man I want working on my daughter!!!

And then the BIG MOMENT came.  Isaac’s surgeon appointment.  We sat in the exam room and anxiety washed over me as I began to panic about all the little things there are to panic about.  I plead with God to make this all work out. That all questions would be answered. That we would just “know” if this was right. I sent out a message to ask for prayer that this appointment would accomplish what it was meant to accomplish. I got a message from my friend Whitney – and well lets just say that it blessed me so much and gave me more strenght to face this giant head on.  And then walked in Dr. Beilman – he had a huge smile across his face. He was HAPPY. He was CONFIDENT. A peace that passes all understanding washed across that exam room and my heart was calm.  He and Louise gave us GREAT NEWS – Isaac doesn’t show any signs of diabetes… not even pre-diabetic!!  They said his islet cells looked great!  What amazing news!!!  He told us that there was about a 50% chance Isaac would need insulin and if he did it would probably only be 1x a day. That’s amazing seeing they usually say that two thirds of people are in fact diabetic after this surgery! He said the fact that he is healthy and strong would absolutely be in his favor. He said that he most definitely could foresee him being able to continue in law enforcement and that he expected a full recovery.  He was HONEST too.  He didn’t sugar coat anything. He told us what would lay ahead if he didn’t have the surgery.  He said the things that are hard to hear.  He told us the intense complications.  But we still felt confident with him and full of peace.  He was HAPPY! I love HAPPY! 

So thank you… thank you to my prayer warriors!  Thank you to my best friends. Thank you to our families. Thank you for the calls, texts, messages etc. We feel so loved and strong with you all behind us.  I may not be able to return calls and messages as quickly as I would like but please know that they make a huge difference in this whole process.  We are blessed beyond measure. 

Next Step?

  1. A CT Scan on Thursday to double check the portal vein where they well transplant the islet cells. Gotta make sure it’s healthy and not clogged.  
  2. A letter getting sent to our insurance to see how much they will cover of the islet part of the surgery.  This can easily cost $650,000. The social worker said to be prepared…. um okay. God you got that covered, alright?
  3. It looks as though the mid-end of May will be the surgery.  Exact date will probably be set early next week.
And on top of all of that… Isaac and I found the place where I will stay while he’s in the hospital and where he will recover. It’s literally steps away from the hospital and safe and clean.  It’s all coming together!
Tomorrow – Tasia’s turn!

Day 1

Day one was pretty busy. I was operating off about 3.5 hours sleep and Isaac off of 1 hour. Talk about tired! We started off a little rough when Tasia realized that she was gonna be getting blood draws today. It all of the sudden became very clear (even though she knew) that this was a medical trip and not a vacation. The staff was great and very understanding and got her smiling in no time. Well they got her smiling after they brought a J-Tip and numbed the IV site. After a 2.5 hours of C Peptide testing we met with a very nice lady who took us on a tour of the new children’s hospital and showed us where she’d be before surgery, PICU after and then the children’s floor where she’d recover. I’m telling you what, the PICU was a constant battle of blinking back the tears for me. Seeing the equipment, rooms, beds, staff and all those kids in ICU was heart wrenching. We saw kids who could hardly walk, a baby fighting cancer that shared a room with Tasia during her testing. I heard moms discussing renal failure and babies screaming in next door rooms. This is not an easy place to be. But in the midst of all of that – this place us gorgeous! Take a look at a few of Isaacs pics and you will see. The kids ward is AMAZING! 52′ flat screens (some rooms have 3 flats screens!) Private sleeping areas, color changing lights, web cams, video games, digital messages kids can have displayed outside their rooms electronically to say whatever they want, refrigerators, micros, fax machines and office space for parents who need to keep working, art rooms, reading space ship area in the library, etc, etc, etc! And the staff are so sweet! If you have to be at a hospital with your child, this is the place!

We also met with the social worker so they could give us all the costs of this and she could ask all her questions. 

We ended the night with dinner at the Mall Of America and a soak in the hot tub. Im off to bed now as Isaac has a full day of appointments tomorrow and I am wiped out!

Thanks for all your prayers! We could really use them tomorrow and Thursday as these are major decision days. 

Hugs to you all!
Jillian


Looking for glimpses of Heaven in everyday life