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, December 7, 2013

Clinic, Clinic Again, Impatient

Monday, December 2nd--Clinic

ANC 1300
Hemoglobin 10.1
Platelets 191

When I took Alice to clinic today I wasn't sure if they would keep her or send us home.  She has been struggling to keep her medicine down.  She complains her tummy hurts more each day, including her ear/face.

Dr. Pulsipher decided to cut back the Foscarnet to once a day, since her CMV level from last Monday was very good.  He felt like the Foscarnet could be contributing to her increased nausea.  I feel like her nausea and diminishing diet has followed the same trend as her steroid taper.  Foscarnet hasn't changed.  But the doctors always start ruling out the little things first before jumping to the bigger things.  I understand that.  It can be frustrating at times though.

We held off on the NG tube, we want to see if her stomach will improve with cutting back the Foscarnet.  Dr. Pulsipher decided to stop the steroid taper.  I was happy to do so.  Her calorie count was increased via TPN.

Alice loves the new toy in clinic...she knows every toy they have and enjoys seeing a new toy when they come in...and always wishes she could take them home with her, but understands and appreciates the fact that they will be there when she returns. 
Exhausted after a long day.

I thought I would post about Natalie's project she did with the help of many others.  I want her to remember it.  My dear friend Nicole is the Young Women's President in her ward and learned of a girl Natalie's age who is in need of a cleft palate surgery.  Nicole arranged some of her young women who were in need of a project and some service hours to put together a boutique and bake sale, in the meantime they included Natalie by helping/teaching her how to sew scarfs and make crafty things.  I was so thankful for this opportunity given to Natalie.  Nicole, the young women, and Natalie did all the work.  They were successful and were able to raise over $600.00 to give to Sparrow's family to help pay for her surgery to fix her cleft palate.

Wednesday, December 4th--Clinic Again

ANC 1400
Hemoglobin 9.9
Platelets 182

We were scheduled to come in tomorrow (Thursday) but we didn't think it would be a good idea, Alice needed to be seen sooner.  Her ear was hurting more and she was struggling even more to keep the medicine down.

Dr. Boyer decided to put her back on Foscarnet (anti-viral) because her CMV numbers increased...apparently the lab results from last week must have been incorrect because her CMV labs were not consistent...darn!  I really liked the mistaken value.

We inserted an NG feeding tube.  She wasn't happy about it but willingly held still.  Sweet Alice, I am so sorry you have to go through all this.

We will start the feeds at 5ml/hr, this is hardly anything, due to her stomach sensitivity we want to start very slow.  The NG feeds will run for 24 hours.

Still the doctors were not able to see any infection in her ear....and no fever.  She is obviously in pain, with no explanation.  Her teeth look fine and her face isn't red or swollen.

She didn't feel like seeing anything on the way home from the hospital.
After replacing this tube six times in one day due to vomiting bringing it up...I was done with the NG tube, I'm sure Alice was even more done with it.  I made a decision to leave it out and stop the feeds.  I also feel this is best for her tummy anyway.

Thursday, December 5th--Impatient

ANC 1500
Hemoglobin 9.5
Platelets 170

After last night Tyler and I knew Alice needed to be admitted.  She vomited around the clock and wasn't able to keep any medicine in her tummy.  Her cyclosporine levels are dropping because she can't keep it down.  She acts miserable and in terrible amounts of pain with her ear/face.

Upon arriving to ICS, the medications that are available via IV were switched over.  This will give her tummy a huge break...phew!

The doctors ordered a CT scan, to help them determine what is going on in her ear, etc.  She went down just an hour after being admitted.  She is so cooperative and willing with the's second nature to her.  The technician commented about how many times she has done scans, etc. on Natalie and Alice.  We've been here too long.

Alice was given morphine for her ear/face afterward and seems more content and relaxed.

Friday, December 6th (Day 50)

ANC 1000
Hemoglobin 8.7
Platelets 185

CT scan came back mostly normal...little bits of sinusitis.  Nothing helpful showed up in her ear or elsewhere indicating such reason for pain.  She is being treated for an ear infection with IV antibiotics (cefapine) anyway.  I would imagine she will start feeling better shortly, and will want to talk again.  I am more concerned about her tummy than I am her ear.

By Monday if we have not seen improvements in her tummy and nausea the doctors will likely order a scope of her GI track to really learn what is happening.  Maybe it's a virus and will pass...wouldn't that be great. Alice will be here at least until Tuesday, if not longer.

Alice hasn't said a word all day (now it's 7:00 p.m.--nurse shift change)...shortly after a bout with the pink bucket, she looked up to me and said, "Who's my nurse today?"  I can't tell you how happy I was to hear her voice.  I smiled so big.

Alice is such a funny girl, since she came home from transplant...she continues to say in her prayers, "Bless me to get back to the hospital" --Alice please stop praying to go back to the goodness! We know what she means in her prayers...she is praying to be better and associates getting better with staying in the hospital, and she does like the hospital.  Anyway, we are going to get better and will be back home soon.
Thanks again to everyone for your love, support and prayers.

Alice is on Day +50...we're taking it one day at a time...and already 50..WOW!
I can't believe this but I think I forgot to post some time ago that Alice's chimerism was at 100% even before she was discharged from transplant.


Last Week--Just for Fun

 Alice swinging under the willow tree.  It was the last warm day to rake the leaves before the snow storm.  I love willow trees...oh boy, they are a lot of work.  After we raked all the leaves and filled a huge trailer, it looked as though it had not been raked.  
The pumps go with Alice, where ever that may be.

This is the willow in the summertime.   When Alice was a little baby we got that green swing for her.  The older kids just swing on the vines.
Natalie's tutor Amy, took Natalie and I out to lunch to celebrate Natalie's hard work.  We had a great time and enjoyed some awesome food.  I have never been to Tia Siam, only heard it was good.  Natalie and I loved the food.  It was a fun little outing for us.  Natalie ate much more than I thought she would.  I was so happy to hear that approx. 80% of their food is gluten free.

Snow Days are Back
Here's the first snowman of the year...Natalie made him with green olive eyes, a carrot nose and an almond smile.

I am so happy to have these boys...they keep each other entertained.


  1. I'm so sorry to hear she's back in the hospital and in such pain! Praying things get figured out and get a little easier soon. <3

  2. Oh my heart!! I can't even imagine what you guys are feeling and going through! I HATE the guessing games, especially when your ideas are different from the doctors! Alice got her wish though…I'm so happy for her ;) I hope this stay helps you find what the root of the problem is so she can be back to her adorable spunky self.
    What a great thing Natalie did! I'm so impressed with those young women and all of their willingness to help someone in need!!

    You are in our prayers ALWAYS!!! Stay strong…"this too shall pass" LOVE YOU!!!

  3. 100% already?? That's fantastic! She has come so far in only 50 days! I am so sorry to hear she's not feeling well. We will continue to keep you in our prayers! Love to you all!

    Ps...the tree will be at our home so you can see it another year when life is a bit calmer for you :)