Tuesday, October 18, 2016

Delivery Day & Waiting for Remission

I've been waiting all day.  I called twice.  It should have been here by 3p.

Here we are now 7p and the UPS truck just rolled up the street.


Sophie's next dose of Humira is this Friday and I've been waiting for it to arrive.

It is stressful for me knowing she needs this medication and not having it on hand.  I have to call each week and set up a time for delivery.  Then wait.  I hate the waiting.

This week is a big week.  Her 3rd dose.  Friday.

An update on Sophie:

When we started the Humira Sophie was taking 40mg of Prednisone to keep her symptoms at bay.  We have dropped her dose by 5mg each Saturday since her 1st dose.  A week and a half ago we dropped to 15mg and after 2 days on that dose her symptoms started coming back.

She had been to the fair with her dad ---
Fair food.  It had to be the fair food!!

But, it was not the fair food.  The symptoms increased.

This last weekend while we were on vacation, her dad and I decided to increase her dose back to 20mg in hopes that she would start feeling better.  Her doctor fully supported this decision. After several days on the higher dose ---today she is feeling better with no symptoms.

What does this mean?  Why is this happening?  Is the Humira not working?

When she started Remicade it seemed to have worked instantly.  Maybe it wasn't instantly but she had been so sick that it did seem to bring almost instant relief.

It has been a tough 7 days.  I have no idea what our next step will be.

She is scared.  I am scared.
She is concerned. I am concerned.
I cannot tell her everything will be ok.  I do not know that it will be.

Her doctor has ordered stool studies, called in more prednisone, and wants to start her on Flagyl.  She said it can take time for the Humira to build up in her system.

More waiting.  Waiting for it to work.  Waiting to find out if it will work.  Is this going to work?  Please let this work!

An update on the mom:

These last few days/weeks/months have been hard.  I have struggled more than I thought I would.  It is hard to see your children struggle and/or suffer.  She was in remission for so long, that besides going to the hospital every month for treatment, it was easy to forget that she has such a debilitating disease.  It was easy for me to push it all down and live as normally as possible.  My understanding is that this is pretty common.  Once you get through a bad flare into remission you just want to forget.

Maybe I never fully dealt with her diagnosis.  It was just months after Nate was diagnosed with Type One Diabetes.  I was probably in shock or denial or still in the diabetes diagnosis haze.  And let me be clear --- there was a big haze!  There were tears and there was sadness but it was all a blur from the haze.

I'm not sure I ever really sat with the sadness. I was too busy making it better for her and for Nate and for everyone else.  I firmly believe that it is ok to be sad and I think for a long time I have tried to hide all the sad and the mad from Sophie but I know now it is ok for her to know.  She has always been so stoic and brave --- I want her to know it is ok for her to be sad and mad or both at times.  It is also ok to be scared.  This is a big disease to carry and she needs to find her way.  I can't do it for her - I will be beside her every step of her journey to become her own warrior.  We have always called ourselves warriors.  Warrior Mom and Warrior Little!

I am reading the book, Love Warrior by Glennon Doyle Melton.  This woman is in my head and in my soul.  As I was reading her words yesterday on the plane, they are so much of everything that I am and that I believe and that I want for my children.  She is like a magical unicorn that has been inside my crazy brain! Or maybe we are all more alike than most feel comfortable admitting? Slightly off topic but it is a great book that should be read by all!

My biggest take away yesterday while reading was a reassuring confirmation on something I had written down earlier this year and she said almost the same thing in her book.

For my children -- Making them warriors: I cannot take away their pain, I can sit with them in the pain because it is part of our journey.  We can handle hard things because we are warriors! With all of my soul I want them to be warriors and always warrior on! Part of becoming a warrior is being brave enough to feel it all and walk through it all.  That is how you find the beauty -- you have to walk though and feel it.

I feel it all and I will continue to walk through it.

Sophie and I are going through a sad season but we will walk through it together.  I love walking beside her and watching her grow strong and resilient.

Wednesday, October 12, 2016

Humira - Round Two

Last Friday was Sophie's 2nd dose of Humira and our 1st time to do it at home ourselves.  There were a few tears and a lot of nerves - Sophie and I were both very nervous! 

She was nervous because she knew how it was going to hurt and I was nervous because I knew how it was going to hurt her too.  

It goes against everything in your mommy soul to hurt your child.  I remember feeling this way after Nate was diagnosed with diabetes when I had to hold him down to give him his insulin shots.  Those shots have gotten easier for us and I know the Humira shots will get easier for us both with time too.  

Friday, October 7, 2016

A New Hope - Humira

On Friday, September 23rd, we began a new chapter in Sophie's Crohn's Disease story.  After we got the results back that told us she had built up antibodies to the Remicade we immediatly began the insurance battle for Humira.  It was a long and heated battle but in the end we came out victorious and the Humira was delivered while Ian and I were still in Hawaii.  As soon as it arrived, I made plans with Sophie's doctor to come into the hospital to learn how to administer the meds.  We had heard and read absolute horror stories about Humira.  About the pain that it causes after the injection.  Sophie had heard them too.  We both had a lot of apprehension and fear about this new chapter.  Sophie's doctor recommended that we see the GI Peds Psychiatrist before coming in for the 1st injections.  

I am so glad we were able to do that!  She worked through both of our fears, gave Sophie some great coping skills, and a few tips for getting through the injection without it being quite so terrible.  It was good for us both to be able to have someone to talk to about it and calm our fears. 

On the 23rd we made our way to the hospital, all a bit nervous for what was about to come but we had a plan, and there was a calmness --- there was also a promise of Chick Fil A and the rest of the day off from school!  SCORE! 

Here is what I posted on Facebook after we were done.  I meant every word.  She is so strong, so stoic, and so very brave:

We did it. She is so brave. I do not take bravery lightly --- she was so strong and brave and fierce. 

She didn't want any distractions (ice, candy, numbing cream) --- she wanted to just do it. 
Y'all I love her brave self so much!!

The nurse gave the 1st shot and I did the 2nd one. She tried so hard not to cry but I told her it was totally fine if she wanted to do so ---- so we cried together.  My mommy heart broke to pieces watching her be so brave and endure such pain while trying to keep her brave face on. 

She said it was worse than she thought it was going to be --- pain level 10 out of 10. She did so great! 

We will begin to taper the prednisone and should know if the Humira is working by mid-October. 

This is being posted on Friday, October 7th, it has been 2 weeks since her 1st injections.  Today she gets her 2nd dose but we do it at home.  On our own.  

Stay tuned for my next post.  Things have been hard.  Harder than expected.  Mostly for me.  It is so difficult watching Sophie deal with so much.  I fear I have fallen back years.  She is doing so much better than I am.  I have been dreading this day, yet here it is . . . 

Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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