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.

Sunday, March 31, 2013

Sinus Biopsy and Happy Easter

Natalie's surgery/biopsy went very well.  While she was in the OR the nurse called me three times to update me and ask for permission to take a biopsy of areas we hadn't discussed.  I started to get nervous for a moment until the doctor visited with me afterward and gave me all the details.  We are happy/relieved to say that her sinus infection is not a fungal infection.  We were worried about that, as they are difficult to clear, however, her infection is a bacterial infection called Haemophilus Influenzae.  This is a bacteria that commonly causes upper respiratory infections in healthy and immune compromised individuals.  She will be treated with Levofloxacin and Flagyl for at least one month.  Already after three days on the new antibiotics Natalie has improved.  She coughs less at night.  Also her asthma doctor suggest an air purifier for her room to help filter any asthma triggers.  I don't know why we have not thought of this sooner.  The air purifier seems to help a lot.  

Also the doctor found a polyp (an abnormal growth of tissue projecting from a mucous membrane) insider her right nose.  A biopsy was sent to the lab.  We will learn more regarding this when results come back.  Usually it's of no concern.

We are excited to see Natalie starting to feel better.  The goal is to be completely better before her trip.  The whole family, except Alice and Evie will be going with Natalie to Hawaii.

I wish Alice and Evie could come too, however, Alice isn't able to period, and Evie is a little small.  I suppose if we leave Evie home than we won't have to worry about bottles, strollers, diapers, etc.  I was having anxiety about leaving the girls for a week, but the doctors helped me understand that this trip is for Natalie and if the babies went than Natalie would be less attended to.  Either way Alice needs to be home.  I know the little girls will be well cared for by family.  I had a dream recently that we were in Hawaii swimming in the ocean.  I was holding Evie in my arms and trying to pull Natalie out of the water, while Evie was continuing to go under the water.  It was stressful, so when I woke I told Tyler, okay I feel better about leaving Evie home.  I feel more comfortable paying more attention to the older children.  It will be an amazing time for us to have this adventure and time away.  It seems so unreal, we have been focusing so hard on medical things that imaging us on a vacation is almost impossible.  We can't wait!! 

Dr. Muntz, Natalie, and Dr. Tanner
Saying good bye to Mom...Natalie was happy to pick orange for her flavor of sleeping gas.

Tomorrow Alice has clinic.  We are so anxious to know what her numbers are.  I almost feel a knot in my stomach.  She has been doing well.  She gets tired easy, but nothing more than usual.  I feel good about what her body is doing.  Tomorrow we will have more information.  Each week provides more material to make decisions regarding re-transplant.

Tyler and I know that many people are praying for Alice...we understand that if her body can pull through this without needing a second transplant, it is solely the efforts of prayer and faith to provide such a miracle.


Enjoying the beautiful weather...launching a rocket!

I love this sink...perfect for a quick bath.

Alice loves pink and purple...especially if there is a yummy treat inside.

Easter Fun
'Oh no the sun is in our eyes'!

The things you find in an Easter basket

Alice wanted to share her rings with Jessie

Tuesday, March 26, 2013

Make A Wish, Good News for Alice and Biopsy for Natalie

Oh my, I have much to post.  I feel like there is so much information in my head and getting it into a post is nearly impossible.  I'm behind with my record keeping.  I will do my best in this post to provide enough detail.  Many people have called and asked what is happening with Natalie's fevers, Alice's transplant plans, etc.  Hopefully I can answer many questions here.

To begin we need to share the excitement around our house.  Make A Wish came this weekend to present Natalie with her wish.  Before I say more, it was fabulous!!  I will share with you again her wish ideas:

--To stay in the Plaza Hotel (NYC) where Kevin stayed on Home Alone 2.  She loves that movie
--To be an Elephant Trainer
--To go to Hawaii (to swim in the ocean with the fish, see real lava, swing on a vine, drink out of a coconut, and fly in a plane)
--To have a family sized bicycle
--To stay in a jungle hut with real elephants
--To give Shamu a hug
--To go back to school (this was during the time she wasn't at school)

Natalie's first request was granted...HAWAII!!!  Natalie is going to Hawaii next month.  She is so excited for an adventure.

Ann Gunther is the wish coordinator and she did a fabulous job.  She prepared a fun treasure hunt around the neighborhood.  As we stopped at each house we recruited more participants.  It was so cute to see so many children sharing in the excitement that Natalie has so diligently earned.

When the treasure hunters got back to the house Ann had the place decorated like a Luau.  The adults were awaiting her arrival to see if she solved the puzzle.  She told me half way through the treasure hunt she figured it out.  Each stop provided a new clue to her wish.  Creative Ann made this up in a jiffy.  Here is the copy of her clues.

#1 (home)

The Wizard received and contemplated a wish

For a very special girl named Natalie Fish.

To find his answer, this is what you must do...

Go on a treasure hunt to find your clues.

Here is a hint, you must cross the street

The Gunthers are who you will first meet.

Sing a song about Jesus, beams, and "SUN"

And a clue they will give you as soon as you're done.

#2 (Gunthers)

Make sure you wear this so your skin doesn't burn

The place you are going is hot you'll soon learn!

Your next hint and treasure is waiting for you

At the Tullis home where a trick you must do.

Count from ten backwards, ending with one

And you'll get another clue with something quite fun.....

#3 (Tullis)

This ball can be tossed with your whole family

For where you are going there's sand and there's sea!

The Arnolds are waiting, that's your next stop

On one foot for them you must hop!

#4 (Arnolds)

Natalie, dear, you’re doing so great!

You’ll quickly discover your special wish fate.

The place you are going for your vacation

Is home to the Dole pineapple plantation!

Now run to the Carmens, use your quick feet

Give Avery high five and she’ll give you a treat!

#5 (Carmens)

Though this flower is just a clip for your hair

Where you're going are real flowers everywhere!

The last person you'll visit for the clue that you seek

Is Sister Lloyd who'd like a kiss on her cheek.

#6 (Lloyds)

Kisses and leis are how the locals greet

Now go back home where friends and family you'll meet

Say ALOHA to those waiting for you

To celebrate your wish and your very last clue!

#7 (home)

Tropical fruit and drinks to share...

Just a sampling of the delights you'll enjoy there!

Your wish trip is somewhere it will not be snowing

With all of these clues, can you guess where you're going?

I wish I could just post a video of the whole thing.  I eventually plan to make a post from beginning to end of Natalie's entire Make A Wish journey.  It will be great to have.

I was standing behind her when she was in the spotlight and everyone cheering.  I heard from others that she became emotional and held back a tear of joy.  She is so good at holding her emotions.  We know she was happy.  She felt so special, and she knows she worked hard to get to this point.

Natalie we are so proud of you!!!!


Before I get to Alice's news I will finish with Natalie's happenings.  Much has transpired over the past week.  As I mentioned before Natalie has been having a series of low grade fevers.  We have been to the doctor, had x-rays, had antibiotics and such.  Still the fevers continue.  The immunologist at Primary Children's ran several tests as well as the pulmonary specialist.  All allergy testing was negative (this is good).  We were searching for asthma triggers.  Other tests such as her blood lines were good, however, her inflammation markers were very high.  CT scans and more x-rays were done today.  Natalie has severe Sinusitis.  There is evidence that some of the bone has been eroding due to the infection.  Tomorrow Natalie goes in for a biopsy of her sinus cavity to learn more about what type of infection is happening.  The sooner this is cleared the less irreversible damage can happen to the bone.  We hope it is not a fungal infection.  They are difficult to treat.  Either way (bacterial or fungal) it will require an aggressive medication.

We are thankful to discover this and hopefully it will be all better in the next several weeks, she has a plane to catch. ;)  Even if we have to travel with's still going to be a great time.

Now as for Alice...where to start!  Lately I have learned a lot about what I can't do.  I can't control a lot of things happening in our lives.  I can't control what Alice's body will do.  I can't control the timing of things, I can't control my wild emotions at this time.  However, there are things I can control.  I can provide a nice meal for my family around the dinner table.  I can hug my children longer and love them more.  I can wrap up in Tyler's arms when my fears come alive.  I can see that each day we learn something new we didn't know the day before.  I can hope, I can wish, and most importantly I can do my best.  That will have to do!  I decided that if I can be successful inside my home, with the things that I can control, than I can hand over the hard stuff to Heavenly Father.  After all He is the Master Chemist.  I know in my heart that what He wishes will be my wishes.

Now switching gears into this week.

Plans are still moving forward with Alice's second transplant.  A donor is ready and willing--Although, yesterday, while in clinic Alice gave us all a huge surprise....Now for Alice's good news....her ANC was 2,000!!!  WHAT!!  It doesn't make sense, and we are ecstatic.  Even her red cells maintained.  She only required an infusion of platelets.  If this trend continues there is a chance we can postpone transplant or possibly disregard it all together.  I can't even think about it because I get too excited and I want to make sure it's real.  It will take a few weeks in a row with such counts to postpone transplant...either way it's enough to smile about.

More to come...tomorrow is another big day.  It seems as though we have been to the hospital five days in a row with clinic visits, no wonder I get nothing done.  Although, I feel so productive just finishing meds, coordinating things with doctors and pharmacy, and keeping the family fed.  I know I must be the most scatter brained person around.  Can I be pardoned?

Again, thank you for your prayers.


The boys are super excited about Natalie's wish.
Natalie in Immunology clinic...she said she would be brave for the needle if Blair came along. She was brave!
Poor Alice's legs.  She has bruises everywhere.  We find new bruises everyday.  She bumps something and bruises. Platelets are good to have for this reason.
Alice's them.

Evie, phase 1
We have been eating a lot of chicken and bones around here.  The more marrow the merrier!

Phase 2

Phase 3

Phase 4

All done!!

Alice and Blair decided to make their own quesadillas.

Wednesday, March 20, 2013

A Peek Into Our Hearts

Monday at clinic the doctors brought some good news and followed it with some not so good news. Alice's ANC was at 600. That is fantastic, it hasn't been that high in months. However, her other numbers were so low she required three transfusions: blood, platelets and IVIG. Normally the ANC count would seem to trump the news, but the doctors are in doubt because she is still requiring the other transfusions. If she continues an upward trend in ANC perhaps the other numbers will come up too. However the doctors are still prepping for a transplant that they feel would happen no later than May.

As the doctors have said earlier they have a donor being tested and prepared.  This donor is male, in his 20's and a perfect 10 out of 10 match.  Unless Alice's body shows some very promising results the doctors feel that six weeks to two months is the longest they wish to allow Alice to wait for a second transplant.

We have become more and more nervous with regard to the transplant. Strangely enough the majority of our nerves have not been on the success thereof, but more so on how the experience could change Alice's personality. We would never be concerned with this aspect if We had not seen it happen with Natalie in 2009 after her bout with the H1N1 virus. Natalie came home from that stay a different person. She is still no doubt sweet as can be. But she came home tired and her patience lost on anything to do with hospital visits. It bled over into other situations such as learning and continuing to be so outgoing as she once used to be. We see glimpses of her old self at times, and believe in time she will be back but we worry for Alice to face similar challenges. we worry for her to face the bitter fruit of chemo again. The mouth sores and the excruciating pain of cleaning her mouth several times daily with the mouthwash. We worry of the pain she will feel when she wretches each morning. We worry for her because we will no doubt feel so helpless at times and all we can do is be there for her and hold her in our arms. We also worry for the doctors who we know are at this moment configuring a chemo regimen they hope will suite her current status and future needs. We worry for our other children who have so patiently helped us; and in so doing taken a back seat sometimes to our focus. I worry that the decisions Lisy and I will make as parents will be the right ones that will lead our family to safer grounds emotionally and physically.

Our days are filled with incomplete thoughts as we struggle to finish a thought or task due to mental and emotional exhaustion.  Lisy continues to lean on me for support as I her.

Our thoughts continue to turn to the reassurance that somehow we know everything will be okay.  It will, no matter what happens.

Natalie continues to have fevers and more seizures.  We have more appointments this week with Pulmonology and Immunology, and later Neurology we should learn more of what she is dealing with.  In the meantime she has been on antibiotics.

Next week Natalie will find out if her wish has been granted through Make A Wish.  She can hardly wait, she is so excited.  More news to come.


Tuesday, March 12, 2013

Blood/Platelets for Alice/Fevers for Natalie

Yesterday Alice and I spent the day in clinic.  We knew she was in need of blood and platelets, we didn't realize just how badly she needed them.  The doctors were equally if not more surprised than us.  Her hemoglobin was 5.3 and her platelets were 3.  Normal range for a hemoglobin is 11.5-13.5.  Normal range for platelets are 150-400.

Her ANC remains at 200.  This doesn't say much considering she receives Neupogen every day.

After a long day in clinic she received both infusions with little problems.  We are not sure how long before she needs more.  Currently she is requiring a transfusion of some sort weekly.  The hope is that her body will gradually manage to go longer between infusions.

Alice remains cheerful and happy...we are praying that the right decisions will be made at the right times, especially in the upcoming months.

Natalie has been having fevers on and off for the past week plus.  Nothing has come of the fevers yet, other than Matthew had similar symptoms and became well.  We assume it is a virus of sorts...and that her body just needs more time to push it out.  Her asthma has been a great challenge, yet we continue work at it.  Surly this winter air quality has been hard for her.

We are being better with Natalie's no gluten diet.  It has been a real bugger for us.  However, she seems to feel much better when she follows a gluten free diet.

Apparently the doctors stated that Alice's recent scope indicated only GVHD and no Celiac.  They did confirm that Natalie's scope appeared to be very different than Alice's despite the GVHD.  This tells us that it just may be true that Natalie has Celiac.  I suppose Tyler and I were trying to find all the reasons to believe that Natalie does not have it.  Who wants Celiac???

Being able to accept it rather than deny it has truly made it easier to deal with; and as I have said before, it can be a blessing in disguise as it forces us to eat healthier.

The past couple weeks I have had a terrible headache/cold.  I wonder if stress and lack of sleep might be contributing? ;)  By mid-morning I told Tyler that I was going downstairs to sleep and didn't know when I would return.  I have so much on my mind lately, however, I'm having a hard time thinking through it all.  Before I fell asleep I took a notebook and pen and wrote everything down that has been weighing on my mind from the little things to the large things.  Sadly my list was long.  I then fell asleep.  Three hours later I woke (minus a few calls from the doctors periodically) remembering my dreams.  I had a series of random dreams using all the information I had written in my notebook.  Upon awakening my mind felt 20 lbs. lighter.  I suppose that is one way to clean your cognitive mind.  Of course the things on my list have not resolved, yet some of the unnecessary stress has.  The brain has an interesting way of dumping information/clutter.  I was thankful for Tyler in giving me that time...he is great!

We are so happy, Alice has been home a week.  According to her status...everyday at home is a blessing.  She is happy nearly all the time.  When she has a meltdown she seems to rebound quickly.

Well I could write more, but I'll save it for later...we are happy to be together and hope it continues on....


Natalie was desperate for a huge box.  I went to Lowe's hoping to find something...luckily I did. I was determined to fit it into the car.  The lady at Lowe's must have thought it wasn't going to fit.  However, she under estimated my will power...I wasn't about to burst Natalie's hopes of a giant box I promised to well as my own sanity in listening to her disappointment.  Sometimes Moms seemed a little weird to me as a kid...I get it now!  :)

What a lucky day...we found a PINK wagon to play in while we waited for our blood and platelets to infuse. Such a simple thing goes a long way.

Alice can entertain herself well!

Another great past-time.

Monday, March 4, 2013


This morning came fast and early.  I knew this would be the case...It was a late night.  I will say my least favorite part about being here is waking up to the loud scale and vitals at 7:00 a.m.  Truly 7:00 a.m. is not early in the real world, but in the hospital it feels like 4 o'clock in the morning.  For anyone who has spent even one night in the hospital can attest to this.

I've tried to convince the doctors that the weight and vitals can wait.  My petition didn't get very far...of course I knew it wouldn't.  I know they have schedules to follow and decisions to base off this early morning information.  Currently there really isn't a perfect way to please both sides.  I do have a list of ideas/inventions that will make any hospital stay easier and more efficient, inviting a better sleep environment.  All I need now is plenty of spare time to make these ideas realities. Hmmm...oh and I might need some scientists, engineers, medical experts, etc.

Alice's ANC was actually 200 today.  This is great for her.  She received platelets and more Neupogen (and will continue to receive Neupogen each day at home); she will be checked in clinic on Monday, possibly to receive blood.  She came home on an additional antibiotic called Cefepime; while in the hospital she was on Linezolid as well, another antibiotic.

We are so excited that Alice came home today.  As we were driving home she continued to tell me to drive faster because she wants to see her family.  What a sweet thing it is to be all together!

We had an amazing dinner together provided by a sweet neighbor/ward member.  We had a quick family home evening discussing how we need to be more careful with germs now that Alice is more fragile.  The kids have heard this drill one too many times and didn't seem too thrilled about it.  The night ended in front of the T.V. watching Peter Pan, with Natalie cranking the volume up and the rest of us suffering through.  Everyone was fighting over who gets to cuddle with Mom.  Alice had her double pump system running while Evie taunted her with tugging on it.  And all the while Tyler slept through the whole thing.  He managed to be left alone on the couch.  I love my family, even when we are wild and obnoxious.

Welcome Home has been a long month!


Room packed up and ready to go.  She insisted on wearing her Minnie Mouse dress home ("the most beautiful dress she has ever seen"), so I had to go back to the car and get it out of the bags I had previously taken to the car.  It was all worth it.
Why do these masks make children look so cute. 

She was afraid to get cold outside.  It was windy and cold...good idea Alice.
 I had to post this made me laugh so hard.  When I pulled up with Alice from the hospital Tyler was just returning from an errand with the kids.  He pulled Evie out of the car and this is how she was.  I'm still laughing.  Tyler said he was just dropping the kids off somewhere and Evie had no business getting out of the car....thankfully according to the way she was dressed!  Seriously how many Dads can relate to this--and Moms.  I can!

Sunday, March 3, 2013

Learning to Draw a Smile

Alice is feeling great.  She is back to playing all day and happy.  She might be able to come home tomorrow (Monday).  She and I had a great day enjoying one another.  We even took a long late nap together.  Now I am paying for it on the other end.  It's nearly 2:00 a.m. and we are wide awake playing all sorts of games and puzzles.  

I decided to start preparing our things in the event that we are able to go home tomorrow...if not, at least the room will be a little more organized.  

When the doctors came by this morning we discussed a short term plan for Alice.  
Here it is:  We plan to give Alice's body approx. two months to improve enough to help us feel comfortable about not proceeding with a second transplant.  She will be given every chance she can to do this.  We will watch her closely for Graft vs. Host Disease and illness.  She will require infusions of all sorts in the meantime.  If Alice's body does not do well with this plan then we will have a sit down discussion with all her care givers and decide the next step, which would most likely entail a second transplant of another donor.  

Clinically she does fabulous.  It's strange to look at her and see the true reality of her troubles.  She acts and seems perfectly healthy most of the time.  Dr. Boyer did say that because she continues to do well clinically she provides more optimism for the best outcome possible.

Alice has also shown precursors of white cells...this is a great sign!

I had the chance to slip away today and catch the sacrament meeting here at the hospital.  It was nice to be there; 30 minutes and in your pajamas...can't beat that. ;)  

Today she said she wants to go home to her family and named each person one by one to the nurse.  Later as we were giggling and playing games, she said, never mind I just want to stay here.  One on one with Mom or Dad everyday and a nurse waiting on you with every request...can it be any better; this must be why it's hard to keep up with her at home; where is the nurse and the one on one undivided attention?  Still I prefer to be home together.  

I just can't get enough of Alice...she is too fun to be around.  We have been working hard today learning to draw a smiley face.  She wanted to curve her line upward so badly and after much work she got it!  She said, "Now my people can be happy."

The truth is Tyler and I have no idea what to expect in the future...we have no idea how rocky or smooth our road will be.  We have no idea what next week will bring, but we do know that none of it matters, as long as we know how to smile and say thanks to our Heavenly Father for every moment we are given in this mortal life...There will be a day when even our trials will be cherished as our greatest and fondest moments for eternity.  I suppose I am speaking for my children as well, when I say none of it matters…if we could only change one thing it would be to suffer for our children that they may not have too. 

Life is good, especially when there is only one direction to look—upward.


Some Late Night Fun

A Person

"The Happiest Person Ever!"

Giving her toys a bath.

I think they had at least three baths today...including Alice. :)

Friday, March 1, 2013

Three Penny Wishes

Tyler brought Blair and Evie along for the ride as he and I switched places at the hospital.  I was so happy to walk out of the unit where Alice is staying to see little Evie and Blair smiling at me; Evie with three random bows in her hair and no shoes, but she had socks.  I love the daddy hairdos.

Blair wanted to throw some pennies in the pond as we were leaving.  I gave each of them three pennies...Blair shared his wishes with me. #1 To have a transporter, #2 To have laser eyes, #3 To have Alice get better.  After he threw his pennies in he said, "Hey, Mom I don't think my wishes will come true because look my pennies didn't sink...the pond is frozen"  I just laughed, and enjoyed the moment.  I didn't even think about the pond being frozen.

Up and About

This is the first time she has sat up in almost two weeks.  She at least has been walking around the past couple days.

As for Alice, she is improving each day.  Her infection is looking much better.  She will stay at least until most if not all of it has healed.  Maybe into next week.  We try not to ask when we are going home, because that question never has a definite answer.

We continue to discuss what is around the bend regarding Alice's care.  We have talked of many things...we feel at some point something will stick and feel right.