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.

Thursday, May 30, 2013

Great News

Today the doctors came in visibly upbeat and gave the results that have become so foreign to me that my reaction was one of dismay. Alice's numbers are up. Her hemo count is at 13.6, her platelets rose to 33 and her ANC is 2.6 (2600). After reading off the results the doctors said, "you can go home." Usually after hearing the results I've programmed myself to ask, "well how long will it be to match blood and get platelets?" Today was no different except that I caught myself at mid sentence and requested them to repeat their statement. I couldn't believe it, we were out of there. I had to hold back my emotion because I realized we may be in the middle of a turning point. Alice let her emotions fly because she didn't want to leave with out ordering herself lunch and playing with the toys for six hours. I was good with it. We still have to balance her possible GVH as we taper her medication down. If her GVH persists then we are back to where we were regardless of where her numbers are. We know how quickly she can change for the worse; but for now, Alice is doing better and that is what counts as we take it day by day to her recovery.

On a different note, but shifting the positive news into four-wheel drive; I realized the other day that school is close to getting out and summer is here. Many of you will venture outdoors and try your luck with nature. But before you do, there is no better way to be instructed on the safety and "neatness" of nature than a tutorial by Lenny Pepperbottom. "Isn't that neat?"


Thursday, May 23, 2013

The Sleepy Fairy

Monday, May 19

Clinic for Alice---Good News!!  She did not need platelets.  She is headed into her third week without platelets.  We are so excited that maybe there is some production happening in her marrow.  She did need red blood cells, and again it took a bit of time to match her blood.

ANC stayed at 2000 which is great considering she went from having Neupogen every day to every other day.  Platelets increased to 19 from 17, and hemoglobin dropped to 7.1, thus needing an infusion of red cells.

We are happy with these numbers, and feel a surge of excitement that our ever so small window of avoiding transplant has widened just a tad, acknowledging that we have a tendency to become vulnerable with the ups and downs of Alice's fickle body.

I said to Alice recently that she is a very special little girl...she corrected me and said, "I'm not special, I'm a fragile little girl, with great big plans...I'm gonna change the world."

She loves to read the story of Ordinary Mary who changed the world, and her favorite song is Mindy Gledhill's Whole Wide World.  Apparently she put the two together and does in fact have great big plans.  I don't doubt her one bit...she has enough strong will and stubbornness to back any dream.

I am very happy to announce that Alice has stayed in her own bed every night for the past week.  Bedtime just got easier, thanks to the Sleepy Fairy.  My friend Annie gave me a great idea to leave a note (from the Sleepy Fairy) under her pillow...on the nights she goes to bed on time and stays in bed.  It's amazing how motivated she is to wake up to a note.  She has been collecting all her notes.  We read them over and over and over.  I love it!!

Wednesday, May 22

Natalie had an appointment with neurology.  It was very good to visit with Dr. Bale and discuss her current seizure medication.  He and I were able to thoroughly discuss Natalie's situation in detail and come together on future care and practices.  We hope to transition her to a different medicine in the upcoming weeks.  I was happy for the extra time he spent with us.  She was terribly bored and continually reminded me of how bored she was, but we survived.

Thursday, May 23

Natalie had an appointment with ENT today.  Her ears are looking better, yet still have some fluid in the inner area.  She will remain on the antibiotic for another week and then we will see how she does.  Hopefully she will improve, it isn't out of the question to place drain tubes again if her infections continue to reoccur.
She was less bored today because I let her take a box of fruit snacks with us to the appointment.  Fruit snacks are the way to her heart.


Can't wait to make another note from the Sleepy Fairy...I'm really having a fun time with this.

Wednesday, May 15, 2013

Alice's Biopsy Results

On Monday, while in clinic we received news regarding Alice's bone marrow biopsy, which was done last week.  We learned that her cellular density has increased from 5% to 15%.  This is great news.  What does this mean? It means that we wait again a little longer to decided what's next.  Tyler and I are learning even more about patience.  I suppose one can never learn enough patience in a lifetime.

We are happy to wait two more months and see if she improves again.  Avoiding a second transplant is our better option, if the stars align.  Because her cellular density has improved, this possibly indicates that her marrow is regenerating a little more and hopefully producing more, and giving us more reason to wait.  The true test will come with time, as we measure how often she requires infusions of red cells and platelets.  Normally the doctors wouldn't let one wait this long in her condition, however, she is doing very well clinically.

Alice did not receive any infusions this week in clinic.

Counts: ANC--2000, Platelets--15, Hemoglobin--8.8

Alice will have neupogen every other day this week, rather than every day.  This will give us a better idea as to how her counts are doing naturally.

She will likely require infusions next week.  It seems as though she is going longer between infusions....even being a day or two, this is improvement. :)

I asked the doctors if Tyler and I are seemingly indecisive with future decisions with Alice and he reassured me that it isn't just us....they (the team of doctors) are equally indecisive.  Therefore, at least we are all on the same page.  I feel like a broken record, but again Time is our Tool!

I was upstairs with Evie reading to her as she couldn't sleep.  I heard some sounds coming from the stairs, I looked over and saw Alice coming my way.  She said, "Mom, you wouldn't believe what happened to me!!"  (with her hands on her hips)
I wasn't sure what to think, for a moment I felt nervous that maybe she hurt herself, or something happened to her line.
I said, "What!"
She said, "Dad put me to bed!"
I felt a sigh of relief and a giggle, but then reminded Alice that it was 10:30 p.m. and Dad has every right to put her to bed.  She persuasively disagreed and somehow ended up joining our story time.
Tyler has since gone to bed, rightfully so--and now I'm stuck with two sleepless girls.  I'm considering taking some hypnosis classes that specialize in putting little girls to sleep....and staying asleep!


Saturday, May 11, 2013


Natalie's Wish
April 24-May 1

Can we stay here and never go home?  A regular question from Natalie. 
The water was just what Natalie needed.  She wanted to swim day and night. She would have tried to reside in Hawaii indefinitely had Alice and Evie been with us.

Tyler made a great video capturing some of our favorite things about our trip to Hawaii.  

Thursday, May 9, 2013

Labs for Natalie

Natalie went to Riverton Hospital today for a chest x-ray and a sputum test.  We think her sinus infection is returning.  Her fevers continue and her symptoms are very similar to that of six weeks ago when we started her course of antibiotics.

We have started her again on further antibiotics until we hear differently.  We might learn more depending on the sputum test results.

Hopefully in the next few days we will see her symptoms improve.

As for Alice she is recovering from the biopsy.  She squats down to pick things up from the floor, because bending over hurts her little hips.  She is so cute.

We are looking forward to the upcoming beautiful weather, maybe it will help dry up some runny noses at our house.


Wednesday, May 8, 2013


This will be a quick update.  I have some pictures but can't find the cable to down load's a common thing for me to loose.

Friday May 3rd,
Natalie came home from her short two day stay in the hospital.  She was so excited to come home as she hadn't yet slept in her own bed since Hawaii.  We headed from the hospital to Grandpa Duncan's viewing.  My grandpa passed away while we were in Hawaii.  He was one month away from 94 and lived an amazing life.  We are so happy we had the chance to visit with him before we left on our trip.  Saturday was the funeral.  We are so happy we could be a part of it.  We will miss him.

Monday May 6th,
Alice had clinic.  It was a long day, we expected this as last week was quick with no infusions...we tried to plan it that way, so while in Hawaii nothing at home would be too eventful.  However,  this time in clinic Alice not only needed blood and platelets but her pamidronate was due.  It alone is a three hour infusion.  Pamidronate is used to strengthen bones and prevent bone loss.  It is given once every three months.
Alice's ANC this week was 800, Platelets 10, Hemoglobin 7.9
Alice and I finally got home at 7:30 pm.  Each week it takes a little longer to match her blood.

Tuesday May 7th,
Alice had an orthopedic appointment today.  Her arm is healing very well.  I really think the calcium supplement she is taking is making a big difference.  Prior to her appointment she again managed to slip her cast off.  She must not like the saw. She is now wearing a black Velcro removable cast for two more weeks and then will be cast free.  Every time we go to the orthopedic office she and I use the side door to avoid the waiting room; near the door is a coat rack with a hook just her height.  Her favorite thing is to hang her jacket while we visit with the doctor.

Wednesday May 8th,
Alice had a bone marrow biopsy today.  She went to the Rapid Treatment Unit.  It is much easier than going through same day surgery.  The NP had to poke her three times to find what she needed.  I know Brenda, NP is great with the biopsies, so I worried a little that maybe there just wasn't enough marrow to work with.  Biopsy results will be in by Monday, our next clinic visit.  The doctors plan to sit with Tyler and I together to discuss the results and the next step in moving forward with Alice.

Tyler has been working on putting together a video of our Hawaii's been hard to find the time to finish it up.  It's coming along and we can't wait to share it.

Natalie saw the video today and almost cried because she wants to go back.  We had the best time ever!  We only took nearly 1,800 pictures/videos. ;)  We didn't want to forget a thing.


Thursday, May 2, 2013


The night we were boarding the plane to return home Natalie began to feel sick and was brewing a fever.  We gave her some Tylenol.  It seemed to break the fever.  We were in such a hurry to pack I had unintentionally packed her seizure medication in the check on bags.  Luckily I had already given her evening dose to her and only needed it with me for when we arrived in Salt Lake.  We flew home through the night.  All was well, each of the children slept most of the way.  I couldn't get comfortable no matter how hard I tried.  I watched a couple movies and relived the vacation in my mind.  Natalie was lying on me.  She remained fever free the whole time.

When we arrived home we all jumped in the shower/bath to clean up before seeing Alice and Evie.  Tyler's dad brought Alice home and my parents brought Evie home.  It was so good to see the girls.  Evie gave everyone a huge hug, except me.  I suppose she was mad or confused at me.  I was sure to fix that and kissed her little cheeks a thousand times.

By 9:00 in the morning nearly an hour and a half after being home we were so exhausted that we each began to crash at different times.  Our bags were strung out all over, it was chaos.  We completely forgot we hadn't given Natalie her seizure medicine.  As the day passed on I eventually got both the little girls to take a nap.  Natalie and the boys had been watching movies, and had fallen asleep.  I decided to take a nap myself.  I was sure to check Natalie before I laid down.  She was doing fine, no fever.

The next thing I knew Tyler was calling for me with great concern in his voice.  I jumped up and ran to Natalie.  She was mostly non responsive.  She wasn't holding her head up well and couldn't communicate much at all.  I could see in her eyes that something wasn't right.  She was drooling and acting funny.  I held her quickly and check for vital signs.  Tyler had already given her Tylenol and her seizure medicine at this point.  I can't express how thankful I am for Tyler being there for her just in time.  She then proceeded to seize completely.  It became aggressive and uncontrollable.  I held her still to prevent any additional injury and had my hand in her mouth with a clean cloth to prevent her from biting her tounge or mouth.

I was frightened and crying as I felt so helpless.  There was nothing more we could do....except call 911 and wait and hope that she would stop seizing.

Within three minutes or less the Lone Peak Fire Dept. arrived.  I have never been so happy to see anyone in all my life.  I was SO impressed with how fast they responded.  Every moment was critical for Natalie.  The four men that came to our rescue were absolutely phenomenal.  They were so good at what they had to do to help stabilize her.  The IV was placed and nasal versed was given.  After a few minutes she was calming down but totally non responsive.  Her breathing remained good, thankfully.

We are so thankful for the exceptional rescue these men gave Natalie.

We had neighbors show up and help, that was awesome, we love our neighbors.  They removed the boys from the scene as I wasn't able to, but will always remember the look on Matthew and Blair's faces.  I noticed that before the neighbor took the boys to her house, the fire marshal put the boys to work doing other things, and I now realize his intention.  So impressive.

Tyler rode in the ambulance with Natalie and I came shortly later.

We think this is what happened.  She must have some sort of illness stirring and causing the fever.  It is possible that it could be an ear infection, reoccurring sinusitis, or a virus.  A fever lowers her threshold of seizing.  She hadn't had her seizure medicine that morning.  And I think she was slightly dehydrated.  I felt like I was constantly asking her to drink more while in the sun and such.  She never wanted to drink much.  I began to almost force her to drink.  All of these factors together contributed to her seizing.

Tyler and I were extremely worried about her as she wasn't able to move the left side of her body for sometime afterward.  We worried that she may have had a stroke.  It was troubling.  Finally after some hours in the ER she began to show movement in her left side.  She is now fully functioning with her left side.

When all the chaos blew over and Natalie was stable, Tyler and I sat beside her bed talking over everything. We are thankful this didn't happen during our flight home.  We are thankful it didn't happen while away from home, earlier in the week. We are happy she was able to have a wonderful time...and especially we are thankful she is okay.

I didn't want to leave the hospital and return home until I felt she was mentally stable.  I asked her as I was leaving, what her favorite part was about the trip.  She said, "The fire throwing part" (The Polynesian Cultural Center's show HA-The Breath of Life---It truly was incredible).  I then felt better about leaving.  Tyler remained with her.  I knew I needed to be home with Evie.

Tyler told me that just before Natalie became non responsive she looked at him and said, "Dad, I don't want to die."  When he told me this I wanted to cry even more.  Of course she was frightened of what she sensed was coming.

Natalie you are so strong...WE LOVE YOU!!

Natalie asked each day that we were in Hawaii if she could stay for a whole year...but with the request that Alice and Evie join us.  The kids kept telling Tyler that he needs to get a job in Hawaii.  The trip was INCREDIBLE!!  We had a wonderful time!!  We are grateful for Make A Wish.

We are so excited for Natalie to come home...hopefully tomorrow!  She is anxious to go through her Hawaii souvenirs.  We hadn't much of a chance to unpack.

We also can't wait to post about our trip.  We have lots of pictures and movies to post.

Many thanks to the Disbrow's and Grandma and Grandpa Schellenberg for taking care of Evie.  Many thanks to Grandmother and Grandpa Fish for taking care of Alice, and for Amber; she did all Alice's IV medications and oral medications.  She did an incredible job.  Amber even spent the nights with Alice.  She woke at night with Alice helping fill her needs and requests, which is not an easy job.  Thanks!!!


Completely exhausted and still recovering from the seizing.


I was so happy to see her smile for me.  She looks tired but cute.

They missed each other.

Great Pals.  Happy to be together again.

They love the Hawaii dresses we brought them.  Alice has a new red cast.