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.

Wednesday, January 30, 2013

Alice Needs Blood

Last night after the children were all sleeping, Tyler and I laid in bed talking.  He eventually fell asleep and I continued to let my mind wander.  Two hours must have past before I fell asleep too.  I thought of all the millions of things I am thankful for, each of my children, each of their strengths and weaknesses, the funny things they say and do, the hugs and kisses they share, I thought of the first time I knew I was in love with Tyler and all the amazing things we have experienced together.  I even imagined a life without any peaceful it was, yet I know that the peace and perfections we can only sometimes imagine, truly cannot be understood without challenges.  We are surrounded by glimpses of peace and perfection, learning to cherish them and appreciate them is a blessing and comfort.

When morning came, Tyler and I found ourselves amazed that not one child woke during the night.  It almost seemed unreal.  We won't complain if it happens again :)

Alice had clinic today and because the weather was so snowy and the roads slippery, Tyler decided he would be taking her today.  I was wishing to be there, however, it was better for me to stay home and do things I couldn't have accomplished had I gone to clinic.  Natalie, Evie, and I had a good day.  We turned on some fun music and cleaned.

Tyler called from the clinic to tell me that Alice would be needing more blood today; she has a warm antibody now, which makes the matching process a little harder. The doctors will place her back on more steroids and some other medications.  Her ANC was back to zero, her Hemoglobin was down again to 7.  Her magnesium levels are high, therefore, she will take a brake from magnesium. Tyler also mentioned that the doctors are not sure what to do specifically with regards to Alice.  They seem a bit directionless/perplexed...they spoke of the possibility of doing transplant all over again, Tyler and I continue to feel like her transplant will make it...of course we hope for this.

I was reminded of this quote today that I recently read.

"...falling down is a part of life, getting back up is living."   --(not sure who it is from).


"What lies behind us and what lies before us are tiny matters compared to what lies within us."
       --Ralph Waldo Emerson

Little reminders to look upward and press forward.


Tuesday, January 29, 2013

Shingles and ENT

I haven't had much of a chance to post.  This will be fast.  Saturday night we noticed a strange rash along Natalie's torso.  She complained that her back was hurting.  It didn't seem like her usual hives.  Amber was visiting and suggested that maybe it was shingles.  I instantly realized that it had to be just that.  Her back pain was very similar to Matthew's when he had shingles.  We called the doctor and they asked us to bring her in Sunday morning. 

Thankfully they only needed to see the rash and prescribe the proper medications.  We stayed only half a day in an ICS room....our fastest stay ever.  Natalie was content to watch movies and play I SPY until the medications were ready.  

She is taking Valacyclovir (anti-viral) to help clear the rash.  It has been quite painful for her; however, some Tylenol is helping take the edge off.  She continues to fever off and on.  

 The air has been so terrible lately; it causes asthma flares with Natalie, in which she requires oxygen at night once again. She is not fond of the blow by, and especially the nasal cannula.  Tyler gently set her down and explained to her why it is important that her lungs get the proper amount of oxygen.  Saturation levels below 90 can over time damage the heart.  Natalie likes to hang around 81 with no assistance.  One night I sat by her bed for good portions of the night to make sure she kept the blow by near her face.  It was exhausting, so we decided we just need to keep the monitor on her and hopefully she will get used to hearing it alarm and roll back closer to the oxygen source.  There is just absolutely no easy way to do it.

On Monday Natalie had a visit with the ENT and the Audiologist.  Natalie's right ear never healed from her surgery in September when they removed the tube.  Still remains a hole in her eardrum.  The ENT presumes this hole is largely affecting her hearing.  He suggests once it is patched, there is a chance some of her hearing will be restored and she may be able to avoid needing hearing aids.  That would be great.

She is scheduled to have surgery the end of February; the ear patch has a 90% success rate and should take approximately two months to heal.  We hope all the statistics fall in Natalie's favor.  We have yet to explain to her what will take place.  She will be devastated to learn that she needs surgery.  For her, it's always one more thing.  She continues to ask, when am I done?  Many of her questions have no answers...we remind her that she has come very far and will continue to improve.

Alice is well enough, her tummy hurts and the diarrhea continues.  She has an appointment tomorrow with bone marrow.  We hope her counts are better than last week.  She is so patient.  I have no idea how a three year old can be so patient.  I often wonder if she is far beyond her years...just stuck in a little sick body.  The way she reasons and communicates is abnormal for her age.  She understands more than even some adults.  I suppose she was given this gift knowing her situation would require it.  Words cannot express what a tender mercy this is for Tyler and I.  Things can always be worse...we are thankful for the blessings we have and the little things that make a big difference.


There is a smile...I love Natalie's smiles.
Banana Smile.

Flight of the Navigator.

Natalie loved this show.

Her favorite channel on TV, the tranquil channel.

Wednesday, January 23, 2013

Alice is Home--Blood Transfusion

Alice came home yesterday from a 5 day hospital stay.  She did very well and enjoyed most of it.  She needed a blood transfusion before she came home.  It was a little odd that she needed blood.  Her hemoglobin was 7.  The doctors think it is possible that her low blood level was caused by a virus.  Nothing has come back positive yet, except Rhinovirus, which in the past has not reduced her red blood cells.

She received Neupogen twice and IVIG once while in the hospital.  Next week in clinic we will see if her blood levels have maintained.  We hope they do.

Alice is finally off antibiotics (IV and Oral), this might help her diarrhea improve.  We have been doing acidophilus intermittently, however, will start it more regularly. We are going to cut out apple juice, hopefully it will help too.  The apple juice was 5 parts water and 1 part juice.  Still it may have been contributing to the diarrhea.

It's wonderful having Alice home!


We love the comments and advice...even though we don't reply (time purposes) we are always up for trying things to improve our situation.  Thank you for the ideas...we hope the little changes make a big difference.

Sunday, January 20, 2013

Hospital Sleep Over With Aunt Amberly

Last night Amberly came to stay with Alice.  She and Alice had a great time.  Aunt Amber always comes prepared.  They did princess puzzles and more.  When I told Alice that Amber was coming she said to me, "You can go now Mom."  I was happy she was so excited and I know she is in good hands.

Alice insists on ordering her own food, wearing her Rapunzel pajamas from Uncle Paul.

Aunt Amber with Alice, and new P.J.s for the sleepover.

Once Amber arrived I headed home, It was nice to be home and snuggle with Evie; and to be with the rest of the family.  At home we stayed up late watching all our old home videos.  The kids loved it.  We have not seen them in a very long time.  It is interesting how we can long for certain memories of the past.  Our children are still young, yet Tyler and I kept saying that we would love to go back in time and enjoy the moment once again.  It also made me miss little Alice.

We anticipated on bringing Alice home this morning, however, the doctors called and would like to keep her for a couple more days.  There is concern regarding her GI system, it is wise to monitor her a little longer at the hospital.

Alice feels discomfort, I'm certain of it, however, she acts as if all is well.  I know it is because she doesn't know any different.  Normal for Alice is unlike normal for most people, her stamina and attitude amazes me.

The kids at home are busy playing, watching home videos and drawing mustaches on each other.  Never a dull moment.  So much for my eyeliner pencil.


Friday, January 18, 2013

Alice Has A Fever--ICS

Last night Alice complained her ear was hurting, she was slightly warm, nothing too troubling.  By 3:30 am she had a temperature of 101.4.  Tyler brought her to the hospital.  The standard initial tests were done, blood drawn and cultures sent off.  They started her on an antibiotic called Cefepime, this will clear up any possible ear infections quickly.  Hopefully Alice will come home Sunday Morning.  She has not had additional fevers, and by Sunday Morning the blood cultures will have had time to grow something if there is something there.

Alice is having a great time here, It has been fun to see everyone; we love the staff at the hospital.

Tyler and I were discussing in clinic on Monday that it will be hard to leave the bone marrow service when the girls are done...Natalie is almost there. Soon Natalie will be seen only once a year, as long as she remains healthy. The bulk of her medical care will then be transferred to immunology, and her other specialties. It is a bitter sweet thing. We have truly appreciated the program and people, and soon we will take a big step forward. It is a wonderful and exciting thing to take this step forward, yet we will miss the great people we have come to love.

Easy hospital stays such as this seem so quick and simple, however, I feel there are more challenges at home with Evie who is still trying to recover from this past illness that went through the house.  She wants me to hold her non-stop.  She has been fairly pleasant despite her discomfort. 

I came to the hospital this evening and traded Tyler places...I already miss little Evie.  Tyler is so good with her, they have become great pals as of late...I know she will be just fine.


Thursday, January 17, 2013

Last Round -- Happy Transplant Birthday Alice

Yesterday (Wednesday) was Alice's final round of Rituxan.  She did well, and now we just wait and watch.  It will take several months before we can measure the successes of this treatment.  It can take up to two years to learn if her body will recover from the treatment as well.   We hope eventually she will recover her B cells.  In the meantime she will be supplemented with IVIG, donated antibodies, which are made from B cells.

Alice no longer needs her daily antibiotic (Cephalexin), her IV anti-fungal (Caspo), and the IV anti-viral (Gangcyclovir).  She remains now with only one IV medication.  Life will be a bit simpler now, in this regard :)

Clinic was long for us yesterday.  Natalie had buckets of labs, they drew more than the allowed amount (with a doctor's approval)...all in one poke, we were very happy it went so smooth.  Natalie was brave enough.  She had a three hour long Psychology evaluation, she was a good sport, her Psychologist was awesome.  At one point we called a break to feed her.  She skipped breakfast, she was too upset about going to the clinic, she gave A LOT of blood, and she seemed weak.  Once she ate something and had a drink, she seemed more alert and ready to finish the testing; after which she headed over to audiology for a hearing test.  Partly into the testing she was too sleepy and tired to continue.  No big deal--we rescheduled.

Unfortunately we discovered in the pre-phase of the audiology testing that Natalie's right ear drum has not yet healed from the tube.  They will give the ear another three months to heal...if it doesn't she will require a surgery of patch work to close the hole in her ear drum.  We will hope for the best.  It is hard for us to see all that she has been through and wonder how much more she must experience.

Tyler and I came home exhausted.  Alice was upset when we arrived home, she wanted to stay longer and Natalie was so happy to be home.  Funny girls!

Today is Alice's One Year Transplant Birthday!!  Jan. 17th

Happy day for Alice...she and I took a long afternoon nap together.  I believe that was the best thing that happened today.  Later we took all the children to visit Uncle Justin and Aunt Jeanette in Mapleton to explore the snow cave system they created in their back yard.  It was awesome!  Everybody except Evie liked it, surprisingly; Evie is such a snow bunny, maybe the tight space was scary for her.

We hope to make contact with Alice's donor.  If her donor consents to exchange information...we look forward to personally thanking her for giving life to Alice.  We will always remember the selfless act of giving by Alice's donor each and every day---Much gratitude to be expressed.


Sunday, January 13, 2013

Slow and Steady Wins the Race

I've been thinking a lot lately about the tale of the tortoise.  I feel like a turtle, slow and steady.  I keep saying to myself, "Slow and Steady Wins the Race".  The days have been long this past week.  All the children are dealing with something, including Tyler and I.  Tyler has a terrible head cold; I have a cold left over from the flu; Natalie, believe it or not is the healthiest of all, yet continues to deal with the hives; Matthew recovered from the flu then developed a secondary infection in his ear; Blair has croup; Alice vomits regularly with muscle pain and tummy aches, and diarrhea (which could be a result of many things in her current situation); and Little Evie seems to have merged the flu right into a double ear infection and junky lungs.  It's no fun at all.

Last night was almost comic...I was running between all five children tending to each child’s needs.  Natalie was settled once the Benadryl began to work its magic.  Alice kept the pink bucket near her with a Chux pad beneath her...and a watery apple juice bottle in her arm.  I had the thermometer, stethoscope, otoscope, Advil and hot rice bag with me at all times--I was ready.   I was so thankful that I had taken a nap yesterday; Tyler was so good to keep the kids from waking me...surely it made the night's challenges bearable.

We started antibiotics today for Matthew and Evelyn; Blair is taking a steroid for his croup.  Things are going to improve around here. :)  

It has been a very long time since Tyler and I have been ill.  This past week we have been reminded of how blessed we have been to have gone so long without sickness.  We can hardly complain, we have been watched over. 

Again, we are at crossroads with Natalie and now Alice in regards to gluten.  They had been doing very well as we reintroduced gluten, all was well, but now some few months later we are seeing hives on Natalie and tummy aches with Alice.  

We are going to hit it again with both more gluten!  I wish to know 100% what is actually happening with them.  It may take much time and effort to solve the problem.  It's a hard thing to change a diet so drastically.  Surely it won't happen over night.  I have many great resources to pull from...thanks to so many who have provided advice and websites, etc.  

This past week, we have played the Wii A LOT (the only good thing about being sick).  I walked in and saw Blair playing, I said to him..."Blair can you be Mom's helper for a minute?"  He said, "Okay Mom...I'm a good boy even when I'm lazy."


After a couple days...washing syringes is a regular thing around here.

Thursday, January 10, 2013

Round 3 and The Flu

I intended to post earlier this week, however, I have been under the weather and have felt very little motivation to do much of anything.  Monday night I substitute taught a Pilates class...had a great workout, the next day my muscles were sore, more than normal.  I thought it was from the class, although it was the beginnings of the flu.  I spent all day Tuesday cleaning the house and making sure I sterilized thoroughly.

Matthew has been sick since Friday...a full week now.  We had him tested and he was positive for Influenza A.  He has missed practically a full week of school.  Poor little guy.  Evie got it next, then myself.  Blair seems to be slowing down as of today.

My sweet friend has brought dinner by two nights in a row.  I was especially thankful as I wasn't feeling entirely well to cook a meal.

Natalie, Alice and Tyler are well presently.  We hope that the flu shot that Natalie and Alice received will protect them from this terrible virus.  It's strangely true that the house isn't well and Natalie and Alice are not the sick ones.  We hope it remains this way.  Natalie practically eats  an entire bag of cutie oranges herself each day...maybe all the extra vitamin C will keep her going.

Wednesday Alice received her third round of Rituxan.  It went well.  Getting to the apt. was the challenge.  We had a long night with Evie, by morning we were exhausted.  The keys were lost...I finally found them in the girls' dollhouse.  Needless to say we were not on time to the appointment.  Next week will be better.

Today (Thursday) Alice had an early appointment with the orthopedic.  I called and cancelled it because it wasn't absolutely necessary.  Later today Natalie had an appointment with the pulmonologist.  She didn't want to go AT ALL.  She has long passed her threshold of doctor's appointments.  She fights it entirely.  This month is busy.  We hope she can manage enough to tie all the loose ends so she can return to school and feel like a normal girl...that is all she wants.  Speaking of which Natalie has complained less this week about not being in school because Matthew has been home to provide company on her level.  There is always a positive among a negative.

Natalie continues to ask about her Wish.  It sounds like it may be just around the bend.  She is desperately in need of something wonderful, new/different, exciting, fun and adventurous.  The person who created the Make-A-Wish foundation is someone well as those organizations/individuals who provide funding.  The children find much hope and healing through this program, I'm certain of it.  We are tremendously thankful to be a part of it.


Alice in clinic...enjoying the newest toy at the clinic--a Minnie Mouse bow shop.  She is much better  at leaving the toys behind, because she knows they will be there when she returns.

Pulmonary Function Testing.  It's exhausting, but Natalie did great.  An hour of  aggressively working the lungs would be tiring.  


She just wanted me to take a picture of her.
They boys though the nose plugs Natalie had to use today were pretty cool.


Sunday, January 6, 2013

Alice Round 2 Rituxan

It was my turn to take Alice up for her Rituxan treatment this past Wednesday. When I woke her up, the first words out of her mouth were, " I get to go to the hospital today...yeaaaaaa." She is always compliant to get her clothes on and prepare for the trip when she knows the destination will be a room where her request to play with toys will be granted. After arrival and settling into her room she was pre-medicated with some Benadryl and I had supposed she would start to dose off, but it never happened. She had anticipated the Benadryl's affects and mentally fought through the drowsiness. I laughed to myself as I watch the vigorous play slow down to a vacant stare, and then five minutes later her eyes blink and she becomes herself again. She beat the system today. The Rituxan treatment went well. Her numbers have not changed much, but we do not expect them to shift until her treatments are finished. When it was time to go, she cried.

The doctor called a couple days after Alice's visit on Wednesday and informed us that she had a negative CMV (cold virus) test.  Great news, we can reduce her infusion of Gangcyclovir to once a day.

Natalie's asthma has been kicking up lately due to the air quality outside. She will cough all night, and in the morning her stomach muscles as well as her throat are spent from the "all night" workout. After studying the weather forecast it didn't look like the inversion would be swept away for another few days so I had the idea to get her up and out of the bad air. I decided to take her, Matthew and their Uncle Josh sledding in the mountains. It was great for Natalie as we rose out of the bad air, her coughing slowed down. For one mile we sledded back to the car on a single tracked path underneath the snow covered pines and wound around logs and rocks that would bounce us faster down the mountain. Our feet were the brakes and when used the momentum would cause the snow to spray in our face. It was so cold it gave us a brain freeze, but the excitement of sliding down the mountain quickly makes you forget. The smile on Natalie's face, I think read as though she had forgotten for a moment what she has gone through this past year.


A short clip of Sledding down the mountain. Uncle Josh on Camera duty.