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.

Monday, April 22, 2013

IVIG for Natalie--More Infusions for Alice

Evie and Matthew...pals!

I'm staring to feel like it's Ground Hog day around here.  I wake up, look at the clock and think...'what do we have going on today?'  'Oh yes, a doctors appointment.'

Natalie had a visit with the immunologist Dr. Chen on Friday.  The labs we had drawn this past Wednesday were in preparation for this appointment.  Dr. Chen wanted to check specific antibody titers.  Natalie had two immunizations nearly four weeks ago...I think I forgot to mention that in a post, but this is a big deal for us.  She is starting all over with her immunizations.  We are taking it very slow.  Anyway, the titers measure how much antibody an organism has produced that recognizes a particular epitope.

Fruit Snacks...make it worth going to the doctor.

Natalie had some, but little response to the vaccines.  It was good to see some response, but we hoped it would have been more.  Basically, this means her immune system is still maturing and with time that response will improve.

So, to ensure that she would be good to travel, we went ahead and loaded her up with some IVIG to cover our basis while on vacation...this will really help protect her from getting sick while traveling.

Saturday night Tyler and Matthew went with Natalie to the RTU to have the infusion of IVIG.  She did well, it makes all the difference to have one of her brothers with her.  She was more brave!  They didn't get home until almost two in the morning.  It was a late infusion.  We are thankful for a great team of immunologists who have tested her immune system out enough to know what she needs at this time.

Nothing like having your brother by your side to make you feel better.

A couple hours later.

I can't even say how excited the kids are to travel.  We are all looking forward to a change of scenery.  I can't remember the last time we have been beyond Utah or Salt Lake Valley. The kids are counting down the Hawaii.   It just doesn't seem real.

We are going to miss the little girls.

Alice had clinic today, mostly the same scenario as last week, although her white count jumped up again (neupogen).  She received platelets and blood today.  It took until 3:00 in the afternoon to start the infusions.  A full day in clinic.

Levels:  Hemoglobin 7.8, Platelets 22, ANC over 2000 :) wish it weren't artificial, but we'll take it.

Checking In

Getting Comfortable

We suspect that when we return from Natalie's wish trip that things will start happening very quickly with Alice in reference to a second transplant.

We already know the flight home will be long...that sounds terrible doesn't it...we don't sound a little burned out do we? ;)

As far as feeling burned out--we feel that way often, but can't entertain the thought too long, rather we have to keep moving forward and telling ourselves that we can do it!!!  Just like what Alice would say when she was so sick in the hospital..."I can do it!"  It makes it easier when you tell yourself those simple words.

Thanks for your prayers.


Itchy, Itchy, Itchy

She loves dresses

Visiting Grandma and Grandpa Duncan...Lisy's grandparents

Pretending to drive Uncle Deans sports car

Matthew found this on his way home from school and gave it to me.  I love how thoughtful children are.

This video is Natalie showing how brave she is with her blood draw on Wednesday the 17th!

This is an old video when Alice was in the hospital with GVHD and wasn't able to eat.  I found her pretending her pencil was a cookie...I had her pretend again so I could record it.

Thursday, April 18, 2013

Busy Week

It was another long day at clinic (Monday). We were anticipating Alice's numbers this week since it would have been two weeks she had been off of her marrow medicine. Last week her ANC count had fallen to 600. If today it was the same it would have been great news for her. However when the doctor came in and reported her numbers it was worse than we had expected. Her ANC spiraled down from 600 to 100. I sat back in the chair and finally exhaled a breath that felt like I had been holding the entire week. When I breathed back in, it felt as though I was inhaling reality as well as the air, and I became old.

Dr. Boyer, expressed his frustration too as he explained that the next decisions to be made would be difficult. It is concluded that Alice will be required to have another transplant. The difficulty will be deciding on how to give it to her. Will we request more stem cells from her previous donor? Or would it be better to start again with a new donor? There are upsides and downsides to both.

When I think of her lying sick in bed with mouth sores, and getting up only to wretch in her pink bucket, my shoulders sink and my frame aches.

Alice, at least for the clinic visit was happy and played as she usually does. She required platelets and slept through most of it. Upon coming home Lisy and I spoke of what is to come and how we will help Alice over her next bump in the road. 

Today Alice received a new cast and the x-ray shows that her bone is healing very well.  We have been loading Alice up with a calcium supplement.  The prescribed calcium supplement from the doctor included magnesium and zinc.  It made her stomach terribly upset and she vomited with each dose.  The very day we decided to stop the prescribed supplement, my cousin Stefanie showed up with the perfect fix...a more gentle supplement, yet very effective.  How thankful we are for her timing.

Somehow she wiggled her way out of the cast.  It was intended to be loose because she was still swollen at the time it was placed.

We heard her talking and playing by herself, when we checked on her she was playing with her cast.

We gently slipped it back on.

The technician at the orthopedic office went to get the saw, to cut Alice's cast off, when she returned, Alice said , "I don't need that saw, I got it off".

A new green cast.  That is the color she wanted.  

Evie mimicking everything she sees...I helped her put Alice's old cast on because the thumb hole was tricky.

Natalie was very brave today as she needed to get more labs done, which meant she would need to receive a couple needles. She was also asked to be on camera in the process. The footage would then be used in effort to help other children feel more comfortable when they get a poke from a needle.  Knowing Natalie, I was very skeptical on how she would do. I thought the only thing she would show these kids would either be, first: where the best hiding places in the room are, and second: to explain in high decibels how to tell everyone they are "dumb," and follow that up by instruction on how to run for the hills when the needles come out. Alas, I was wrong. She did well, and I'm proud of her. Lisy got it on camera or I wouldn't have believed it.

We will post the video tomorrow.

We are excited for Natalie as we are helping her prepare for her wish trip to Hawaii. For now we will be getting her ready and making sure she feels that we are focusing on her as well as mentally preparing for Alice's next transplant. It is interesting enough that this past week I came to realize how far Natalie has come to having a normal immune system. I watched her splash and swim in the pool today. Her smile and content of being in the water with the other children gave me a sense of relief. Natalie doesn't smile enough, and I guess I can't blame her. From her point of view, I imagine she probably thinks she hasn't had much reason to smile. But lately her smiles are coming more often, and they seem to be lasting longer. I would suppose her smiles to be a bi-product of her feeling normal. And I'm sure the anticipation of flying on an airplane headed to Hawaii has its positive effects too. We are thankful to the Make a Wish Foundation!

The three older kids have been learning some pool safety skills and basic swimming from a great friend of ours, Nicole.  This helps Lisy and I feel better about things, while in Hawaii surrounded by water.

Which brings me to another point that seems to make me sound like a broken record, but each time I contribute to the blog I feel an overwhelming sense of gratitude to all of you, and therefore need to express my thankfulness for what you do for us. We read every comment you send to us. We love them.  We would not be where we are now without all of you. Thank you. Thank you for helping us help our children. 


Saturday, April 13, 2013

Happy Birthday Blair!

Blair turned 6 today.  He was very excited for his birthday but managed to keep cool and was patient for the evening to come when Grandparents came to celebrate and sing happy birthday. 

Blair we love you and are so proud of you!!!  Happy Birthday!!!

Blair requested Clam Chowder for his Birthday Dinner.  Our sweet friend Emily brought some by the day before, we had Chowder two days in a row.

Natalie went to the dollar store several weeks ago to get Blair a birthday present.  She found these great eye glasses.  She had it wrapped and hidden for three weeks prior to his birthday.



Alice and Grandma

Blair was the VIP in his kindergarten class.  We shared with the class all of his favorite things.  He was a little shy.

Wednesday, April 10, 2013


Because I am behind this week, I will make this post in segments so I can keep it all organized.

Monday April 8th 

Alice had clinic.  Counts:  ANC 600, Hemoglobin 7.9, Platelets 52.  All counts are low, however, we knew they would drop as they are no longer being artificially supported, yet we hoped for better results.  The doctors are giving her another week on her own before they start boosting her again with the Neupogen.

It was a long day for us.  She required more blood, however, continues to be more difficult to match.  We are thankful for that person who planned ahead and donated at a blood drive.  She did not receive platelets.

Interesting note:  The couple days following Alice's broken bone were miserable.  She was in terrible pain.  Even pain medicine wasn't helping.  She cried all day and night.  Her body was looking very poorly, as her low platelet count began to manifest itself all over her body.  Her little arm was struggling to heal.  Finally, when she received platelets this past Saturday, things changed instantly.  Within hours of receiving the platelets she no longer complained of pain.  Certainly most of the platelets rushed to the wound and began working their magic.  Her entire well being is dependent on others.  It's amazing how life can be shared.

Plans continue to move forward for a second transplant.  Tyler and I are struggling with this decision.  At times we feel good about it and other times we are confused.  Regardless we are heartbroken.  It almost makes it harder knowing what is ahead in reference to a second transplant, where as before we had no clue what transplant was first hand.  It is good to know what we know, yet it's not....hard to explain.  Right now, Tyler and I are just focusing on keeping our minds and hearts filled with faith not's a constant battle.

Thankfully, we know too much to be afraid and hopeless in the end.  We feel best when we are reminded that Heavenly Father is the captain of this ship and knows our course even in the darkest and stormiest nights.  This is reason enough to stop occasionally for that sigh of relief and comfort.

Playing in the wagon.

A much needed hours in a clinic room is exhausting.  She was extra emotional today with every little thing.

Nice and Cozy

As For Natalie

Natalie also had a doctor visit today (April 8th)....thankfully no labs.  Natalie was seen by the ENT, Dr. Smith.  We are very excited to say that Natalie's ear drum has healed nicely.  Dr. Smith gave Natalie the green light to swim and ENJOY IT!!!  This is awesome!!  So, it is true Natalie has already been swimming, and she said to me, "Mom, have you ever seen what it looks like under's a different kind of blue."  I almost wanted to cry.  I then told her, "Just wait until you see the tropical fish in Hawaii!"  She is going to LOVE it!

Coming soon, A post dedicated to Natalie's new water adventure!!

AND...more amazing news, the hearing test (done April 8th) shows dramatic improvement.  She no longer needs hearing aids!  Still high frequency loss, but hearing aids don't fix that anyway.  We have noticed that gradually as her ear healed that she was hearing better, needless to say, the contention level in our home has improved too.  Less shouting.

Still we plug away at the gluten free's getting easier.  I need to do some research on places in Hawaii that offer gluten free menus...this might be tricky being away from home with this diet.  Any suggestions?

Just wearing a swim cap around the house, are we excited?

Evie does everything she sees.
Natalie's sinus infection is healing.  She hasn't coughed in over a week.  Her fevers have ceased and she is feeling great.  Two days ago she had a mini seizure, however, we missed a dose of her Keppra.  We won't make that mistake again.

 Tuesday April 9th

Alice went back to the same orthopedic doctor who helped us with her leg.  They are so great and wonderful to make special accommodations for us, as we have to avoid waiting rooms etc.  Alice was given a darling pink hard cast today.  It's water proof! :)  They will change it weekly because of her risk of bacteria.  She will get to enjoy all the colors of the casts.  She sometimes puts little things in her cast to itch it.  I think it's cute, but she complains of the itch.

Icing her arm before the hard cast.

Pretty in Pink

Evie wanted to wear Alice's old temporary cast.

We are getting too excited for Hawaii, it can't come fast enough.  I'm still sad about leaving my babies, but I know they will be safer in Utah with family than they would be in Hawaii.  We have some packing to do and lists to's going to be so fun!!


Saturday, April 6, 2013


Alice received a giant bag of platelets today.  She couldn't wait until clinic on Monday.  In fact she will most likely receive more on Monday.  Her mouth was starting to bleed out...this is a good indicator that she needed them asap.  She said to me over and over, "Mom, I need to go to the hospital."

When she came home from the hospital she said, "I feel better."  She really perked up and wanted to stand again and even play.  Her arm is beginning to throb less and the swelling has improved.  She feels better each day.

Tyler and I immediately felt a huge sense of relief when she received platelets.  We were worried about her.

Alice wanted to read me a story so I recorded her doing just that....this is just audio.  She is obviously feeling better. :)


Friday, April 5, 2013

Broken Bone

 Sadly, little Alice broke her arm yesterday evening.  Both bones of the forearm, the radius and the ulna, are fractured, the radius more than the ulna.  Thankfully the break is well aligned, and should heal nicely.

Tyler and I did not see the accident, but assume she tripped.  This type of fracture is typically caused by falling onto the outstretched hand.  We were just getting ready to go in the car, I was grabbing the diaper bag, while Evie and Alice were in the garage beside the car when we heard Alice scream.  We assume Alice tripped over Evie because she was lying on the ground next to her, while Evie had a pair of Blair's snow boots on.  These two little girls can be clumsy together, especially trying to get somewhere.  Natalie and Blair were sitting near by and neither one saw it happen.  Later I asked Alice how she fell down.  She said, "I just fell all by myself".

Truly it doesn't take much for her to injure herself.  Her bones are so weak and fragile.  We have been trying hard to add more calcium to her diet.  She can't have too much dairy for other purposes, and she has no interest in tums or other supplements.  She gets plenty of vitamin D, but not enough calcium.  The dietitian is working on a good liquid calcium supplement for Alice.

If you were to see Alice, she does not look good.  Her body is covered in bruises and Petechiae (Small red spots under the skin where the tiny blood vessels bleed out---because the blood does not clot)  All this is due to low platelets.  Monday she will receive more platelets.  Everything on her is tender.

Pictures hardly show it many tender bruises.

Little tiny bumps into furniture, etc. turn into this kind of bruise...the red spots are the petechiae.

Petechiae everywhere.

Last time it was her right leg, now her right arm.

This morning Tyler told me as I was taking Alice in for an x-ray to the American Fork hospital at 3:00 a.m. that they might call child services on us because of how bruised she looks, of course he was mostly guesting.

We knew the nurse and have been seen by the doctor on other occasions,  they were very sweet, quick, and careful with her immune compromised state.  I called ahead and they prepared for our arrival.  The next week or two for Alice will be hard as her bone begins to heal.  We wish we could take it all away...poor little Alice.

At American Fork ER waiting for x-ray.

Natalie had a visit with neurology yesterday.  It was fast and simple, we just reviewed her seizure medication (Keppra).  Once we return we might try a different medication that has less "irritability" side effects.  We didn't want to change it now and trial it while out of town...sometimes the process of switching to another therapeutic type of medication takes a few weeks.

I have a post coming up soon of something fun and new that Natalie has been working well as Matthew and Blair.  They are so proud of themselves.  I will try to post that soon.


Tuesday, April 2, 2013

Steady at 2000!!

Clinic brought good news.  Alice's ANC remained at 2000.  Alice did require red blood cells as her hemoglobin was 7.9.  Platelets were 15.  This particular blood transfusion took much longer than normal; the blood bank had a harder time finding a match for her.  The blood supply always fluctuates, sometimes they find a good match right away, and other times it takes longer.  Not sure if it means they are low on their supply and options or if Alice becomes more complicated each time, maybe both.  Usually the more transfusions one receives, the more difficult they are to match.  Antibodies are created with each new foreign invader of the body.  We know this cycle all too well.  Natalie spent five years of her life supported by blood transfusions and could never receive from the same donor twice...with each transfusion it became more challenging to find a match.

Anyway, we are happy about Alice's counts.  Her red cells could have been a littler higher, but still good things are happening.  Either way, it will be a slow process moving forward.

This week will be a pivotal week for Alice.  The doctors have taken her off Neupogen, and her main antibiotic.  We are anxious to see how much of her good counts are truly from her own making and how much is artificially created by medication.  It may take a couple weeks to know for sure what her body is doing.  This is a big week for Alice.  GO ALICE---You Can Do It!!

Natalie's cough has improved as well as her nasal congestion.  This is wonderful.  It's amazing how quickly something can improve when treated with the proper regimen.

It's Spring Break and the kids are happy to be home.  I love it too, because I don't have Matthew coming in my room to wake me bright and early.  He gets up early to do his homework...but this week I told him not to wake up so early...I'm terrible.

Although, I have made a new goal to go to bed earlier. I fall into the trap so easily of thinking that I have so much to do once the kids are sleeping; also nights are so hard because we are up with Alice often.  Regardless, early to bed, early to rise.

If anyone sees me around ask me how I am doing on my early to bed goal!  I will need some reminders and extra motivation.

Not to make an excuse but the hospital makes terrible sleepers out of people and it's so easy to become a night owl there.  The difference between nights and days isn't much. ;)