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, September 30, 2012

Emergency PICU--Natalie

I'm not sure what I want to say...I need to post, but I really don't feel like it.  When Natalie woke this morning, she was happy and playful.  By 1:00 p.m. she said she wasn't feeling well and laid down on the couch.  Sometime later she spiked a temperature of 103.5 and seemed a bit despondent.  Her lungs sounded junky, like pneumonia.  We called the doctor, shortly thereafter Tyler brought her to Primary Children's Hospital.

I had left my phone in another room as I was trying to sing Alice to sleep, two times I missed calls from Tyler.  I later called Tyler back, couldn't reach him.  I called to ICS where I assumed Natalie was.  They told me she was not there, they didn't know where she was.  At this point I was confused.  Tyler knows not to go to the ER...what could have happened?  They left two hours ago.  I felt a little strange and nervous.

My call was transferred to the operator who directed me to the room number where Natalie was.  I told the operator that he must be mistaken because that room number seemed like a Pediatric Intensive Care Unit room.  There is no way Natalie could be there.

She was, my heart sunk.

The doctors, Tyler and I were all playing phone tag trying to reach each other.  Finally I connected with the doctor.  I wanted answers.  She explained what was happening, it was so difficult to keep from crying during our conversation.  The doctor kept asking me if I was alright.

As Tyler was driving to the hospital, Natalie wanted to hold his hand from the back seat.  They held hands as they drove the 35 mile ride.  Almost eight blocks from the hospital her hand slipped from his grip and he heard some strange gurgling from Natalie.  He looked back and discovered she was seizing.

He yelled to her and asked if she could hear him...she said yes.  He pressed on the gas, worked his way around traffic, ran a red light...all he could think about was the last few blocks of road to get her to the Emergency Department.

He parked, carried her...running for the doors...yelling for help.  Many people gathered around and placed IV's and administered anti seizure medication.  She was taken straight to the PICU.

We don't know entirely what is happening, we do know that she has pneumonia...most likely has gone septic.  There is a possibility there may be infection in her brain.  She does have a positive fungal infection as well.  Fungal infections can be very challenging because they create a barrier around the infection which makes it hard to clear.

Natalie had been improving so well from her pneumonia two weeks ago, we did not see this coming.  It is likely a combination of the same pneumonia returning plus more.  We now know that the delirium she was experiencing two weekends ago was not in fact her low oxygen levels alone, however, most likely seizing as well.

Natalie had a CT scan recently of her lungs and brain.  She also had a spinal tap.  We will know more information regarding these test tomorrow.

The CT scan was a challenge, she was greatly agitated.  Her ventilator came disconnected three times, she vomited and may have aspirated some.  It was a big process.

Natalie reached out for Tyler's hand to comfort here.  We continued to tell her that she would be okay and that Mom and Dad will stay by your side.  She is not completely sedated (fentanyl drip), so she is able to communicate.  I asked her if she wanted Jerome by her side, she nodded anxiously.

We love you Natalie...Be Strong!

Dad and Mom are both staying the night with you.  We want to make sure everything is good before either one of us leave for any reason.


 CT scan.  This was really hard to manage getting her into the scan with all the machines, etc.  Natalie had a very hard time, she was struggling to breath and couldn't clear the mucus in her lungs.  She vomited in the process and it was scary.  The respiratory therapist was very good under pressure.  Three times Natalie's vent came disconnected.  She would gasp for air.  We were so happy when that was over.  Honestly, I have not felt that afraid since Alice had a code blue.

Jerome and Natalie

Friday, September 28, 2012

Surgery For Natalie/Ear Tube Removal

Today Natalie and I left for the hospital early.  She had her right ear tube removed.  It was a very quick and simple procedure.  She was sedated with an anesthesia flavor by her request.  The procedure was only 15 minutes.

Dr. Smith the ENT said there's a 50% chance that her ear drum will heal.  Because of the duration of time that it has been in her ear and her health situation, the chances of healing are less than normal.  We hope her ear drum heals...if not, she will require patch work to be done.


Just waking up....and Happy

Going home in record time.

Thursday, September 27, 2012

A Broken Bone

Today the kids were decorating their rooms with some Halloween garland and such.  I remember thinking to myself, “This is great they are busy working together and having fun.  About this same time Evie needed a nap, so I laid her down then afterwards thought to myself, “Okay what should I accomplish next?”  I sat on the couch and thought about the other tasks that needed attention.   Just as I was thinking how nice it was that the children were doing so well I heard a terrible cry…the kind that cries pain.
Alice came around the corner sobbing and limping on her leg.  I wondered if maybe she sprained her ankle or something.  I held her and rubbed her leg until she fell asleep. 

I expected her to wake sometime later feeling better.  When she did wake she was crying and wouldn’t walk.  At that point I realized that she would need an x-ray.  I called Primary Children’s Hospital to verify her recent counts before taking her in. They suggested having an x-ray done somewhere close, but not to enter the ER, through the waiting room.

I called American Fork Hospital before leaving the house and shared my concerns about the exposure.  They were awesome.  I parked about 10 feet from the south entrance of the ER, the nurses met me at the car even wearing masks to protect Alice.  They thoroughly cleaned a room near the door.  The doctor was in within five minutes.  The x-ray came to us, and the results and counsel was delivered quickly.  I was so impressed.  Very well done…BRAVO!  Thankfully it was not a busy night in the ER.

When the doctor asked how she hurt her leg I had to give him the only story that I knew which came from a five year old.  According to Blair she was playing with some toys and putting water in them from the bath tub.  Some water spilled on the floor and she fell from slipping on the water.  Later Natalie and Matthew shared their versions…Natalie said, "she was flipped way into the air because of the water and then her leg came crashing hard to the tile…like bouncing.  Matthew said she was cleaning the water up with her feet.  The common factor was water. 

Anyway poor little Alice has a spiral fracture on her right Tibia bone.  A spiral fracture might indicate that her leg was planted and twisted at the time.  Most children in this type of accident may not have broken anything, however, Alice being on steroids (which weaken your bones) and having been through bone marrow transplant was highly susceptible for injury.
The nurse practitioner at Primary Children’s feels like we should increase her calcium intake.  The girls take a calcium supplement (they can’t have dairy) and now they will be taking even more.

In the next few days we will know if her leg will require a hard cast.  And how long it might need heal. 

There is always a sweet moment among dear friend (not knowing our chaos) brought some dinner yesterday for us to heat up tonight.  It couldn't have been more convenient and tasty.


Getting it wrapped and stabilized.

Alice was impressed by such a big band-aid. When they finished wrapping her leg and she stopped crying, she said, "Oh no my face is red".

Monday, September 24, 2012

Clinic and Cake Pops

Good reports came from today's clinic visit.  Natalie's counts are great.  Alice's counts are well enough.  Her ANC was 700.  Next week we expect her to require more Nulasta as her trend has indicated.

Just in the past two days we began to see enough improvement with Natalie's lungs to feel better about her recovery.  Her fevers have gradually disappeared.  She even seems to be doing better with her saturation levels at night.  I noticed two nights ago that she was at least two feet away from her oxygen source and her level remained above 90 for a good 30 minutes.  This was exciting for all of us.  We are more aware of her asthma needs and perhaps this is partly contributing to her improvements.

I think today was our new record time for Clinic.  We left the house at 9:00 a.m. and returned by 1:00 p.m.  There were no infusions or shots today.  Natalie was able to do her labs with a finger poke....YEAH!  Next week won't be so easy, as she will require more labs than a finger poke can provide and Alice may require an IVIG infusion and possibly some Nulasta.

We are moving forward one day at a time.  Surely there are many days we feel like we are going backwards, but in reality we are moving ahead just helps to see it in a more tangible way.  Today was a good day to feel more substance to the girls' recovery.


We are still wondering who is Danika the Cat.

Headed out the door for clinic.
Alice dressed herself.
Last night after baths I decided to see how long the girls' hair has grown.  Neither have had it trimmed and both were exactly three inches.  So in nearly 9 months time their hair has grown three inches.  Is this slow or fast?  I don't know.
She was very confused as to why I wanted to measure her hair with a ruler stick.
Okay, have you ever seen such cute cake pops.  Gluten fee even.  Natalie and Alice had a wonderful time eating them as well as the rest of us.  Alice played with hers for some time before eating's like a toy.  Alice and Natalie packed a few up and took them to the hospital to give to the doctors.  By the time we saw the doctors they hadn't any to give.     Alice was running around sharing them, so excitedly; and when only two remained she and Natalie decided they were too good to pass up and helped themselves.  One of the doctors likes to bake and decorate cakes...I did my best to explain to her how darling they were.

Minnie Mouse--Perfect for Alice.
That poor little elephant--he didn't stand a chance with her.
Amazing talent.  I can't believe how cute they are. 

They almost look too good to be true.  Someone knows Natalie has a fascination with Elephants.

She eats the nose first, it's a gummy worm and the ears are a mint cookie.  Thank you for the cake pops!
Evie loves the cereal boxes. 
Once she snacks in them, we usually dedicate the rest of the box to her.  This is where she goes when Mom is scrambling to fix a meal.

Tuesday, September 18, 2012

Happy News! Natalie Gets to Come Home!

This morning when the doctors came in they brought surprising/good news.  Natalie can go home today and will not need a PICC line.  This is exactly what we have been wishing for, yet thought it was a shot in the dark.

The specific bacteria that she has is Strep Pneumo.  More officially called Streptococcus Pneumoniae.  I included some info from the Internet about it so Natalie can learn more about this....this is the very family of bacteria that she has always been most susceptible to, as her body never did make the pneumococcal antibody.  No wonder she had constant otitis media (ear infection) as an infant and toddler.  We have known this for many years.  The new question is when does Blair's marrow become effective in producing this antibody.

Luckily, this type of bacteria is very sensitive to your basic antibiotic.  She will be able to take an oral amoxicillin for 14 days, rather than requiring IV antibiotics.  She loves to eat yogurt, and hopefully by doing so it will keep a balance in her body's gut.

Streptococcus pneumoniae, or pneumococcus, is a Gram-positivealpha-hemolytic, aerotolerant anaerobic member of the genusStreptococcus.[1] A significant human pathogenic bacteriumS. pneumoniae was recognized as a major cause of pneumonia in the late 19th century, and is the subject of many humoral immunity studies.
Despite the name, the organism causes many types of pneumococcal infections other than pneumonia. These invasive pneumococcal diseases include acute sinusitisotitis mediameningitisbacteremiasepsisosteomyelitisseptic arthritisendocarditisperitonitispericarditiscellulitis, and brain abscess.[2]

Also both Natalie and Alice will need to avoid being outside as much as possible the next few days as the air quality is poor due to many fires.  Pollution is very difficult for their asthma and can make them more susceptible for lung infections.  

We need a good strong rain storm.  I started singing the primary song to Natalie called "When I am Baptized". because it talks about the earth being made clean after rain.  She understood the message.


p.s. Natalie really wants to know who Danika the Cat is.  She received many letters in the mail from Danika the Cat.  She loved it and is anxious to know who sent them.  Anyone know?  In fact, once she asked me how a cat could use a pen and write.  

The absolutely hardest part about going home...removing the IV--OUCH! 

Her favorite place to hang out....yesterday when we were looking out the window in the afternoon we could hardly see the city buildings because the air was so dirty.  I read that the fires in Idaho are blowing smoke our way and the fires in central Utah are as well....thus we REALLY need rain!

Monday, September 17, 2012

Feeling Better

Today Natalie has improved greatly.  She had a CT scan taken of her lungs.  The main reason for the CT scan was to ensure that the noudle on her lower right lung wasn't growing.  It remains the same...which continues to reasure our thoughts of that spot being scar tissue rather than a fungal cluster.  The CT scan did confirm the pneumonia.  The blood cultures came back posivite for gram positive cocci cluster (bacteria).  The antibiotic to kill this bacteria is Vancomycin.  I'm not real excited about Vancomycin, as it can damage hearing.  Natalie has hearing loss already, so we hope her hearing won't be bothered more.

Alice came to clinic, she was happy to visit Natalie and Natalie was happy to see Alice.  I didn't let Alice climb on Natalie's bed or get to the event that she might catch what Natalie has--not sure if it's anything that can be passed to another.

Alice's counts are great.  She didn't require any infusions or shots.  It was an easy day for Alice.

Hopefully Natalie can come home soon.  There is a possiblitity that she will need to come home with a PICC line to finish the IV antibiotics.


Taking a walk downstairs to CT scan.

CT scan

We went for an afternoon walk to help her lungs...she wanted to go to the gardens.

Hanging out in clinic.

Sunday, September 16, 2012


Yesterday late afternoon Natalie came to me with complaints of her ear hurting.  It looked red and inflamed. She developed a temperature.  We gave her some Tylenol, her fever settled.  By midnight it came raging back.  She was at 103.5 degrees.  She was acting strange and seemed very confused and struggled to focus her vision.  She scared us.  We called the doctor, gave her some more fever reducer.  Things calmed down a bit.  She never broke her fever though.  By 5:00 a.m. she was struggling to breath and had slept very little.  We called the doctor again and the decision was made to take her to ICS.  Tyler brought her and met the doctor at the room.    

Upon arriving, she was given an IV, had plenty of blood drawn, had a chest x-ray, and did a nasal swab.  Her oxygen level was 66 (very low).  This would be the reason for the headaches, dizziness, and confusion.  They immediately started her on some IV antibiotics.  

Currently, she is doing much better.  The pneumonia came on incredibly fast.  She was fine and playful one moment, then the next she was ill.  We had just taken her in to see the pulmonologist four days earlier and everything was great.

She is already doing so well with only being in the hospital 12 hours...very encouraging.  The infection is responding well to the antibiotics.  As quickly as it came, we hope it will leave just as fast.  

Her oxygen level on room air is mid to high 80's...much better.  Her breathing is still painful but improving.  

Natalie seems content, and adjusting to another hospital stay well enough.  She just wants to be home for her Uncle Josh's wedding.

She told the nurse when she first came with Tyler at 5:00 a.m. that she needs to get home to see her uncles.  

I helped her shower and dress into some warm pajamas, then we sat in the window to look at the city lights. 

We have another great view...yeah!  She was asking what all the buildings are, and then she said, "When Dad worked in Salt Lake what building was he in?"  I showed her the general direction.  She then asked me, "What kind of job is Dad going to get when me and Alice are all better?" 

 I told her that I wasn't sure, then asked her what she thinks would be a good job.  She said, "I think Dad should be the night watch at the Museum". 

Before bed we played Uno and then watched our favorite (hospital stay) movie again...Enchanted.  

She is exhausted.  Tonight will be a good night for her to rest.  I hope Tyler finds some good sleep too.  He hadn't slept at all last night.

Tomorrow should bring more news...from the looks of things it should be good news.  

Alice has clinic tomorrow, and Natalie is looking forward to her visit.


Great news for Alice...I added a new post back dated for September 6th, that I had forgotten. 

Wednesday, September 12, 2012

Catch Up

There isn't enough time in the day. Lately by the time the kids are settled for the night Tyler and I are spent and therefore everything we intended to accomplish is bumped from today's list to tomorrow's list.

In my mind there is much to record/blog...things I wish not to forget, however, by the time I find a moment to write them down I've already forgotten what I wished to remember. I'd like to say "oh well' it must not have been important. But I can't fool myself, I forget even the most important of things.

For today the kids had a great meal around the dinner table...they are happy, we are all together--everything else somehow manages.

Evie has been sick the past couple days, requiring more of my undivided time. As challenging as it is to have a little one sick, It requires me to spend extra time with her. Sometimes it's okay to have an unfavorable reason adjust our routine.  She has been on my hip or lap more, I've rocked her more...maybe this is all she really needed.  Little Evie can be so independent, I was happy to be there for her when she needed extra comfort. She is well now and back to her mischief.

Update on Natalie and Alice this past week.

Monday was BMT clinic--Alice's counts were great...thanks to the Nulasta she received last week.

It was a long day as Alice received an infusion of IVIG. This made her vomit during the infusion, but seemed to be fine the rest of the time. So far, no headaches from this batch of IVIG.

Most of Natalie's counts were good. Her platelets are low. Many things can cause platelets to drop, therefore, there is no real concern unless the trend continues.

Natalie and Alice have been dealing with irregular bowels. We are adding some more acidophilus into their diet to create a better balance. So far, so good.

Tuesday Natalie met with the pulmonologist regarding her need for oxygen at night. We are going to treat her asthma more aggressively with an inhaled steroid twice a day. This should help her lungs with possible inflammation. In 6-8 weeks from now she will have another pulmonary function test done to see if the steroid has brought improvements.

Natalie's lungs have endured much over the years, she has had several severe lung infections and several basic pneumonias. Also the chemo drugs used in bone marrow transplant can be difficult on the lungs, we hope and pray that her lungs will grow healthier as she grows older.

Recent studies show that the lungs still develop and grow new air sacs into adulthood, unlike previous studies indicating that it no longer produces new air sacs past childhood. If this is true Natalie's lungs will have a healthier chance. Hopeful!


p.s. We have another missing tooth in the family.   Matthew has spent the last hour in his bed wiggling his tooth.  Good luck tooth fairy...this is your chance to redeem yourself.

Alice was playing cowboy with Evie.  She found some great cowboy least she thought.  Anyone who has spent time in the hospital knows exactly what kind of cowboy hats these really are.  I was so glad I had sterilized them since their last use.  These hats are one way to monitor a child's out put...not the most enjoyable. 

Sweet Grace takes good care of Natalie.  She made her a darling quilt and brought her some gluten free cookies.  Two peas in a pod they are.

When leaving clinic on Tuesday Natalie asked to sit down on the chairs outside to observe the birds.  She had me take some pictures.  Children are so great at recognizing the beautiful creations that surround them.

Now this little bird is the silly bird that Natalie caught weeks ago...which I posted about.  She was so excited to see it again.  She wanted a picture of it.  Moments before it made it's appearance she was trying to describe to me what the bird looked like that she caught weeks earlier.

Enjoying herself.

A sweet day for Tyler and Natalie.  Sometime ago I reserved a couple tickets to the Brigham City Temple open house.  I didn't expect to go, knowing that our plans change all the time, but hoped that by reserving them somehow Natalie would be able to go.  I then forgot about the whole thing and the morning of our tour Natalie asked if she could see the inside of the temple.  I remembered the tickets and asked Tyler if he wanted to take her.  The two of them had a great time.  Natalie was sincerely thankful for the opportunity she had to be in the temple.  It couldn't have been better timing.  She had a difficult morning and needed something to cheer her up.

Silly Alice doing what she does best....making everyone laugh.
Once you put a three year old on the swing good luck getting them off.  Why is it--that they never tire of swinging?

Trying a new hair style.  Looks cute Alice.

Tyler was so excited to make me the most tasty tomato ever.  He melted mozzarella cheese with olive oil and pored it over a fresh garden tomato, then sprinkled some Parmesan cheese and fresh garden basil over the top.   It was awesome.

Sunday, September 9, 2012

Zumba Thanks

We want to say Thank You to all those who were a part of the Zumba party. We are very thankful for those who spent many hours putting it together and for those who came to support. It was a good time. Zumba is fun!! Natalie and I enjoyed it. She started out on the floor dancing; then became tired so I sat with her for a moment. She then needed a bathroom break, later a snack, and she even lost a tooth (not from Zumba…phew ;). Between all this I would catch some dancing...I was getting a great workout even with all the breaks. It's great when you can get your heart rate up while having fun.

I especially loved seeing so many friends, whom I have not seen in years and meeting new people who have been cheering us on through this journey. Many thanks!!

Natalie came home and said there were a lot of nice girls at the exercise party; although, she was a little shy, she had a great time.

When she was getting ready for bed she told me that her feet hurt from dancing. It wasn't long that she danced but more than she has before. Where she is today is amazing from where she has come.

Thank you again,


p.s. She was a little disappointed this morning when she woke...that darn tooth fairy forgot to take her tooth. I think we need to fire the tooth fairy, she has only been prompt maybe twice in her career. I ensured Natalie that if she leaves her tooth out during the day she may come while no one is around. After three times checking her tooth...The Ever Forgetful Tooth Fairy finally came. Phew!

Thursday, September 6, 2012

Great News for Alice

The doctor (Hilary) called today and said that Alice's labs from clinic came back and indicated her anti neutrophil antibodies can not be detected.  This is awesome.  Hopefully now her body will be able to keep the neutrophils that it produces, rather than the antibodies attacking them.


Tuesday, September 4, 2012

Time and Hope

Clinic was fairly slick today.  I think it may have been our shortest day ever in clinic...only Alice was required to go.  Natalie was more than happy to remain home.  Alice did not require any infusions today.  She did however need another booster shot of Nulasta.  Her ANC is again low at 200.  She will begin another tapering step with the steroid.  Hopefully as she slowly comes off the immune suppressants her body will be able to make more white cells.

After speaking with the doctors, I realized once again that Time is Alice's greatest tool.  Alice's body has come a long way and has made huge improvements thus far, yet unwanted cells (her original plasma cells) still linger and cause trouble.  Over time these unwanted cells will have to part their ways and we should see the new marrow begin to preform as it should under a less hostile environment.

When this will happen is unsure and less predictable.  The concept of Time is relative...which it seems to always be that way with anything in life, however, in Alice's situation I sometimes wish it were definite.  I would love to know exactly how long it will take her body to fully accept the new marrow as her own and ensure that it will be 100% successful.  I suppose we need to pave our path with patience in order to become friends with time.

In the meantime, we will continue to look upward and recognize each step of improvement along the way...for there are many.

We have a great deal of hope, which we cannot take credit for, because of others coming to our rescue.

Some weeks ago Tyler and I discussed hope.  What is it?  How is it understood?

We tried to define it according to our experience...this is the best we knew how.
    "One might resist to hope, for they fear disappointment.  If so, this is not's cheating yourself of what is already true.  Yet what needs to be learned is that hope is the gate that opens our faith to believe without fear or doubt that what we righteously desire will become our possession."

We feel like hope has been the beginnings of our faith in this journey we travel with the girls.  Hope is given sometimes...and for us it has been received....people are innately good.


My friend Allyson called me yesterday to see if I had plans to attend the up coming Zumba Fest this Saturday.  I am...I have been looking forward to it.  I have to admit, I've never done may be more of a comic show for others.  Natalie was very disappointed that she couldn't go to the recent Fish 5k so I promised her I would take her to the Zumba party.  She loves to exercise.  We are excited for a fun evening.    Thank you to everyone who has been working hard to put this together.