The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Saturday, January 25, 2014

Finally Posting! Day +100

Thank goodness Tyler has been better than I to post. I have been extremely unmotivated to keep up on the blog.  The past month has been very hard for us...we have had so much sickness at our house (everyone has been sick, minus Tyler, thank goodness he was well to stay with Alice while the rest of us couldn't).  It's been hard for me to keep up with just the daily things of life, let alone the luxury of spending time on the internet, so now that we are feeling a little better...here goes for a quick attempt to update our records.

                                CMV results between 12/02/13-1/23/14
          3.4, 3.3, 3.8, 4.0, 4.2, 4.4, 4.2, 4.0, 3.6, 3.8, 3.4, 3.5, 3.3, 3.5, 3.5, 3.5, 3.2, 3.4.

January 8th -- received IVIG, ANC 3400, Hemoglobin 8.2, Platelets 118
January 9th -- received Blood, ANC 1100, Hemoblobin 7.3, Platelets 119
January 10th-- ANC 1100, Hemoglobin 12, Platelets 110,                
January 13th -- ANC 1100, Hemoglobin 11, Platelets 98
January 15th -- GI Scope, No GVHD
January 16th -- Alice threw up her NJ tube last night.
January 17th -- Happy 1st Bone Marrow Birthday!! ANC 100, Hemoglobin 10.7, Platelets 107
January 19th -- ANC 0, Hemoglobin 10.7, Platelets 151, Shingles virus no longer detectable!!!
January 22nd -- ANC 800, Hemoglobin 10.7, Platelets 151
January 23rd -- ANC 1400, Hemoglobin 8.4, Platelets 133,
January 24th -- ANC 2100, Hemoglobin 8.2, Platelets 137, another NG tube placed
January 25th -- Day +100, ANC 800, Hemoglobin 8.1, Platelets 137, NG tube comes out!
    *Alice was receiving neupogen daily for her ANC....since January 23rd she went to odd days neupogen.

Alice has improved greatly since the zoster/shingles virus finally made it's exit.  Her fun talking self returned and she is more delightful.  None the less she still has her moments of melt-downs and stubbornness when it comes to vital signs and taking medicine.

Her nausea continues to taunt her with discomfort.  It's tricky getting all her oral medicines to stay in her tummy.  We have a good day when she vomits between 3-4 times.  The most recent NJ tube eventually came out due to nausea, we tried a week without a feeding tube, it was alright, soon it began too difficult for her to continue taking her medications.  Another NG tube was placed...at first it was good...but before the day was out the tube came up three times.  We decided it wasn't worth re-inserting.  Alice has agreed to take all her medicine by mouth again.  Here goes for another attempt.

The doctors continue to promise that it will just take time...and to be patient with the process.  Yes, we have seen some improvements with her nausea, but it seems so slow.  Some things are hard to be patient with.

There is talk that Alice could be home in approx. a week.  We are working hard for this...and hope we will be ready when it happens.  Her CMV level needs to drop below 3.0 to go home and she will need to switch a handful more IV medications to oral...and keep them down.  Phew...that is going to be a lot of work.

Two days ago the doctors gave Alice the green light to leave her room and walk the halls, in hopes that this will help her GI system wake up.  She loves to leave her room.  She went to the vending machine and bought two bags of fruit snacks for her brothers and sisters to share.  The fruit snacks are hanging on her IV pole at the moment.  When they come to visit they can have their surprise.

Some Hidden Blessings
After being at the hospital for a couple days with Alice I came home to learn that Evie had potty trained herself.  She did a fantastic job and still after weeks continues to be ever so diligent with her new found independence.  Thanks Evie...you are so sweet and I love you!

During the two weeks that we were very ill and home-bound, I was able to bond with Evie more than I ever have.  I haven't had this opportunity due to the intense attention Alice has needed since Evie was born.  Evie and I were hooked at the hip.  I loved every minute of it.  She would sleep next to me every night and we snuggled.  One night I had to scoot over for some more room, she woke shortly after and moved her arms around to find me...she said, "Where's my Mom?"  I reached over and nudged her, she immediately fell back to sleep.

Update on Natalie
Two weeks ago Natalie had high fevers from Sunday to Thursday.  We were worried that this would compromise her neurological status.  It took great effort to keep her stable, avoiding seizures.  On Friday we brought here to Primary Children's to see the immunologist and run some IGg levels.  All levels were normal. She did recover on her own, then three days later spiked another temperature.  This time she seized more than her typical episode.  She was stable enough to recover at home.  It usually takes her several days to recover and suffers from terrible headaches in the meantime.  We assume the fevers were related to the illness/viruses that have been hanging around.  She did have a terrible cough...which the inversion has not helped with.  Natalie was better in time to be a part of a fun adventure with Make A Wish this week, thankfully...it was good for her to have something exciting to do.

Tyler and I are so thankful for the many people who continue to help us with meals, babysitting, house cleaning, etc.  This journey is bigger than us....so Thank You, Thank You!

Lisy


Alice and Erin having a sleepover.  Thanks for the break Erin.
NG tube is back...not so happy!
Notice the NG tube is not in her nose...she looks so relaxed.

When the infectious disease doctors came to round; Alice bargained with the doctor to trade a pink painted star she had made in exchange for the doctors calculator.  The sweet doctor couldn't resist, removed the calculator from her lanyard and now Alice owns a neat little blue calculator.
Having a sleep over with Aunt Amber, you can imagine the fun they had.
Wearing a bumble bee butterfly outfit...checking out the city.

Bath time support.
This guy has lost three teeth in one week.  You can imagine how busy the tooth fairy has been.  Blair said to me, "Mom, I know you are the tooth fairy because she keeps forgetting to get my teeth."  Unfortunately he states a valid point.  Finally by the third tooth, the tooth fairy delivered on time...Blair didn't even know she was prompt; he never checked under his pillow the next morning...just assumed it wouldn't be there.



My Favorite...Evie's glamour shots with Grandmother.  What a fantastic day she had with Grandmother.  Notice the details...she must have been in girly heaven.




Fun time with Grandmother Fish.

A handful of wish kids were given the opportunity to take a ride on the Dream Chaser 4.  Included the picture are friends Connor and Ryan and the pilots.

Connor and Natalie
Matthew and Blair were happy to come along.



The kids signed their names right on the plane.

Natalie with Ryan...SCID pals.

Enjoying the helicopter in a non emergency way.



I had mentioned something about ice skates earlier...here it is!


Tyler's beautiful homemade ice rink.  Thank you Randy and Nicole for not only the awesome idea but helping us make it happen.

Second hand skates and a self made ice rink is all a kid needs in the winter.

1 comment:

  1. Thank you for the wonderful update!! You guys have had quite the month to say it lightly!! What a fantastic idea to have an ice skating rink right in your back yard!! LOVE IT! We love you guys!!! Keep being brave Alice so you can go home with your family!!

    ReplyDelete