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.

Tuesday, January 28, 2014

Monday, January 27, 2014

53 days in the hospital

Just a quick update. The doctors came in this morning with smiles on their faces and delivered the news that Alice could go home today! It will be a ton of work maintaining her medicine schedule, but even then we are so excited to get her home.

Saturday, January 25, 2014

Finally Posting! Day +100

Thank goodness Tyler has been better than I to post. I have been extremely unmotivated to keep up on the blog.  The past month has been very hard for us...we have had so much sickness at our house (everyone has been sick, minus Tyler, thank goodness he was well to stay with Alice while the rest of us couldn't).  It's been hard for me to keep up with just the daily things of life, let alone the luxury of spending time on the internet, so now that we are feeling a little goes for a quick attempt to update our records.

                                CMV results between 12/02/13-1/23/14
          3.4, 3.3, 3.8, 4.0, 4.2, 4.4, 4.2, 4.0, 3.6, 3.8, 3.4, 3.5, 3.3, 3.5, 3.5, 3.5, 3.2, 3.4.

January 8th -- received IVIG, ANC 3400, Hemoglobin 8.2, Platelets 118
January 9th -- received Blood, ANC 1100, Hemoblobin 7.3, Platelets 119
January 10th-- ANC 1100, Hemoglobin 12, Platelets 110,                
January 13th -- ANC 1100, Hemoglobin 11, Platelets 98
January 15th -- GI Scope, No GVHD
January 16th -- Alice threw up her NJ tube last night.
January 17th -- Happy 1st Bone Marrow Birthday!! ANC 100, Hemoglobin 10.7, Platelets 107
January 19th -- ANC 0, Hemoglobin 10.7, Platelets 151, Shingles virus no longer detectable!!!
January 22nd -- ANC 800, Hemoglobin 10.7, Platelets 151
January 23rd -- ANC 1400, Hemoglobin 8.4, Platelets 133,
January 24th -- ANC 2100, Hemoglobin 8.2, Platelets 137, another NG tube placed
January 25th -- Day +100, ANC 800, Hemoglobin 8.1, Platelets 137, NG tube comes out!
    *Alice was receiving neupogen daily for her ANC....since January 23rd she went to odd days neupogen.

Alice has improved greatly since the zoster/shingles virus finally made its exit.  Her fun talking self returned and she is more delightful.  None the less she still has her moments of melt-downs and stubbornness when it comes to vital signs and taking medicine.

Her nausea continues to taunt her with discomfort.  It's tricky getting all her oral medicines to stay in her tummy.  We have a good day when she vomits between 3-4 times.  The most recent NJ tube eventually came out due to nausea, we tried a week without a feeding tube, it was alright, soon it began too difficult for her to continue taking her medications.  Another NG tube was first it was good...but before the day was out the tube came up three times.  We decided it wasn't worth re-inserting.  Alice has agreed to take all her medicine by mouth again.  Here goes for another attempt.

The doctors continue to promise that it will just take time...and to be patient with the process.  Yes, we have seen some improvements with her nausea, but it seems so slow.  Some things are hard to be patient with.

There is talk that Alice could be home in approx. a week.  We are working hard for this...and hope we will be ready when it happens.  Her CMV level needs to drop below 3.0 to go home and she will need to switch a handful more IV medications to oral...and keep them down.  Phew...that is going to be a lot of work.

Two days ago the doctors gave Alice the green light to leave her room and walk the halls, in hopes that this will help her GI system wake up.  She loves to leave her room.  She went to the vending machine and bought two bags of fruit snacks for her brothers and sisters to share.  The fruit snacks are hanging on her IV pole at the moment.  When they come to visit they can have their surprise.

Some Hidden Blessings
After being at the hospital for a couple days with Alice I came home to learn that Evie had potty trained herself.  She did a fantastic job and still after weeks continues to be ever so diligent with her new found independence.  Thanks are so sweet and I love you!

During the two weeks that we were very ill and home-bound, I was able to bond with Evie more than I ever have.  I haven't had this opportunity due to the intense attention Alice has needed since Evie was born.  Evie and I were hooked at the hip.  I loved every minute of it.  She would sleep next to me every night and we snuggled.  One night I had to scoot over for some more room, she woke shortly after and moved her arms around to find me...she said, "Where's my Mom?"  I reached over and nudged her, she immediately fell back to sleep.

Update on Natalie
Two weeks ago Natalie had high fevers from Sunday to Thursday.  We were worried that this would compromise her neurological status.  It took great effort to keep her stable, avoiding seizures.  On Friday we brought here to Primary Children's to see the immunologist and run some IGg levels.  All levels were normal. She did recover on her own, then three days later spiked another temperature.  This time she seized more than her typical episode.  She was stable enough to recover at home.  It usually takes her several days to recover and suffers from terrible headaches in the meantime.  We assume the fevers were related to the illness/viruses that have been hanging around.  She did have a terrible cough...which the inversion has not helped with.  Natalie was better in time to be a part of a fun adventure with Make A Wish this week, was good for her to have something exciting to do.

Tyler and I are so thankful for the many people who continue to help us with meals, babysitting, house cleaning, etc.  This journey is bigger than Thank You, Thank You!


Alice and Erin having a sleepover.  Thanks for the break Erin.
NG tube is back...not so happy!
Notice the NG tube is not in her nose...she looks so relaxed.

When the infectious disease doctors came to round; Alice bargained with the doctor to trade a pink painted star she had made in exchange for the doctors calculator.  The sweet doctor couldn't resist, removed the calculator from her lanyard and now Alice owns a neat little blue calculator.
Having a sleep over with Aunt Amber, you can imagine the fun they had.
Wearing a bumble bee butterfly outfit...checking out the city.

Bath time support.
This guy has lost three teeth in one week.  You can imagine how busy the tooth fairy has been.  Blair said to me, "Mom, I know you are the tooth fairy because she keeps forgetting to get my teeth."  Unfortunately he states a valid point.  Finally by the third tooth, the tooth fairy delivered on time...Blair didn't even know she was prompt; he never checked under his pillow the next morning...just assumed it wouldn't be there.

My Favorite...Evie's glamour shots with Grandmother.  What a fantastic day she had with Grandmother.  Notice the details...she must have been in girly heaven.

Fun time with Grandmother Fish.

A handful of wish kids were given the opportunity to take a ride on the Dream Chaser 4.  Included the picture are friends Connor and Ryan and the pilots.

Connor and Natalie
Matthew and Blair were happy to come along.

The kids signed their names right on the plane.

Natalie with Ryan...SCID pals.

Enjoying the helicopter in a non emergency way.

I had mentioned something about ice skates it is!

Tyler's beautiful homemade ice rink.  Thank you Randy and Nicole for not only the awesome idea but helping us make it happen.

Second hand skates and a self made ice rink is all a kid needs in the winter.

Thursday, January 16, 2014

Scope results

There was good news today with the results of Alice's scope. Yesterday at 2:30 Alice and I headed down to surgery. It was somewhat of a welcome change to get out of her room and into another. The procedure to about an hour. Before heading in Alice said, "Dad I don't want to fall asleep. Knowing that she wouldn't know the difference from the anesthesia she would be given, I replied with, "Alice, you can stay awake." The procedure went well enough and she was back in her room before she came to her senses. The pictures taken by the GI doctor were showing possible signs of GVH in her gut. However we would need to wait until the biopsy results to confirm. In the early afternoon today the results arrived and they were negative for GVH. What a relief. Now we can focus on her CMV levels and how much of the anti-viral medicine she can come off of. If anything today we made a step in the right direction for getting her discharged. I can tell the doctors are relieved now that they can focus on something else in order to get her home. She may still be a little ways out from coming home, but its closer than she was yesterday. Below is after she awoke and wanted some chicken broth.

Tuesday, January 14, 2014

January 14th

When I arrived Sunday, Alice was lying on her bed watching a movie I do not recall seeing before. When she looked at me I saw that she was happy to see me. When she reached for me I felt so good. It had been a couple days since I was last at the hospital. My dad had been with her and reported that she continues to have her moments when Alice is her old self. After my Dad left, Alice asked if I would lay by her. It felt so good to me knowing she wanted to be held. I laid by her side and wrapped my arm over her shoulder. I held her close, but her tubes and wires between us seemed to keep me far away as they would feel my weight and send a signal to the machines that there was an occlusion in the lines. I would continuously need to shift my weight around so as to not set the alarms off on her machines. Sunday night was long. All through the night she vomited or had diarrhea. I changed a dirty diaper every fourty-five minutes and in between cleaned up vomit until seven in the morning. We were both exhausted. She was given nausea medicine throughout the night, but it did little for her. All through the night I felt for her and at the same time I felt for Lisy. She was dealing with sick kids at home. In the morning the doctors were set on wanting to scope Alice's stomach. They consulted with the GI doctors. They decided to eliminate some of the medicine and feeds for Alice first before a scope would be done. By the end of Monday those ailments had slowed down, which gave me some relief as well as Alice. Perhaps her feeds were being administered too fast? If so, its good to know but still tells us she is healing at an incredibly slow rate. The doctors continue to say she is making progress, but refrain from giving a date on when she will come home. I think this stay will be longer than her chemo/transplant stay. Tues: Her ANC count is back down to 300. It is cause for concern, but the low count can be attributed to the anti-viral medicine. She will get another dose of neupogen to kick start her marrow. She did however wake up more pleasant this morning. Her shingles are scabbing over, but still seem to be a ways off from disappearing.
  This is a funny clip of Alice last week.

Thursday, January 9, 2014

Quick Post

ANC: 3.4
Hemo 8.2

Monday morning came and I was preparing the kids for school. It was hard getting them motivated to go back after the holidays. Matthew was crying about not liking school because it was boring, and Blair was playing the "I have a tummy ache" card. I wasn't going to fall for that one. So, I said "Blair, when you vomit at school give me a call and we will come and get you." I still had to get the baby ready for the day drop the kids off and be up at the hospital before 10 A.M. so Lisy would have enough time to get back and pick up Natalie at eleven.

 Lisy and I had quick chat at the hospital door and away she went. She was exhausted. Both of us are spent.  I'm glad to say that Alice was happy to see me although she is still feeling sub par. Her shingles are heeling up, however she continues to vomit and her diarrhea is in  my mind getting worse. She itches all over and has scratched up her head so much we needed to bandage up her crown or she wouldn't allow the sores to heal. The doctors are still positive that she is making progress, but will still not give us a date on when Alice can come home. This stay could very well be longer than her transplant stay. It has been such a long time since she has been home let alone eaten anything not through a tube. Nevertheless she has windows of her old self and it is a good time when she's giggling at anything that strikes her as amusing.

Lisy called me later Monday afternoon to inform me the school called and said Blair was sick. Apparently he vomited in the lunch room. Which from what I understand caused a small chain reaction. Kids dry heaving everywhere, oh the humanity! So, to Blair, "I'm sorry man." I thought you were playing me. I should know better.  To the elementary school my sincerest apologies.


Sunday, January 5, 2014

Day +79


CMV--Alice's CMV level has improved.  The best good news.  Currently her level is 3.4  It has been as high as 4.4, fluctuating up and down many times in-between.  In order to cut back on some of the toxic medications that are helping her CMV level come down she needs to be nearly 10 points lower.  She is getting there!

Shingles--Wow, these darn things have given her much trouble.  I believe in the past two days we haven't noticed new spots appear.  I hope this trend will stay.  Thankfully the majority of her shingles are crusting over, with the down side of them itching uncontrollably as they heal.  Calamine lotion has become a good partner.

Stomach--Nausea is no stranger to Alice, it hasn't improved in my opinion.  She vomits at least every hour-two hours it seems, sometimes she has long stretches of relief.  Still no desire to eat or drink.  Her feeds into the NJ tube are helping her gut move, but also causing more nausea.  She is receiving 30 ml per hour.  In order to be off TPN, she would need almost twice that much.  It will happen, it might take longer than we hoped but surely it will happen.  When she is home and moving around more, her gut might heal quicker.

Cabin Fever--Tyler and I have been pretty good all these years to avoid terrible cabin fever, but this stay has been extra hard.  I wish I could open the window in Alice's hospital room, so she can feel the outside air and breath it in.  I'm fortunate enough to walk outside when I need to, but still I'm feeling the fever.  This is a sign that we have been here TOO long.  I don't know how Alice can do it, without ever complaining or talking about leaving the room and going home.  I know when she is feeling better and has more energy that desire will come.  Maybe Alice will come home in 1 week, maybe 3 weeks...who knows.  I suppose if we had a target date it might be easier, however, we know better than to ask. ;)

Holidays--Even being in the hospital over Christmas, we had a great time.  Words cannot express the gratitude we feel for those who made our Christmas so special during such a challenging time for us.  Also we managed to feel together even though we were apart.  Many people here would say--I am so sorry you are in the hospital again for Christmas.  It is true that being home is the best, but I would reply....we have many more Christmases to come, this one will be especially remembered.  My only regret this year was the fact that I managed to only read half of the Christmas story from the bible to my children before I fell too tired and couldn't finish.  I intended to finish the next day, I didn't, but I know they know the rest of the story.

Strength vs. Weaknesses--One night while I was on home duty, Matthew crawled into my bed hoping I would invite him to stay for the night.  I was just about to shew him along to his own bed, but decided to take advantage of what I recognized as a teaching moment.  I asked him a simple question.  What do you think a weakness is?  He replied saying things such as, crying, getting hurt, etc. I then asked, what do you think a strength is?  He replied by saying things like, lifting heavy weights or big muscles.  I nudged him a little by asking him what he is good at doing.  In his confidence he had a lengthy list, including football, basketball, math, making friends, being a good brother, etc.  I could see that he was beginning to understand and as the conversation unfolded he turned to me and said, "Mom, I know what your strength's the way you love Dad."  I wasn't expecting such a reply.  My heart felt so happy.  I will happily claim that one.


Evie trying out the mini skateboard at Play it Again Sports.  Tyler was in the market for ice skates and hockey pucks...more on this story to come.

Blair is holding a real authentic certificate from Buzz Blair you are a well recognized hero.  Does he look Proud?

Evie was taking apart Christmas as fast as I was gathering it to put away.  She wouldn't leave the costume alone until I got a picture.   You are the cutest wise man Evie!

A New Year's Eve celebration.  This day was by far Alice's best day yet.  She was so happy, polite, kind, talkative, and smiley.  She was showing more of her old self and it was wonderful.  Of course you can see that she was feeling well enough to do some make-up....turns out, she looks more like a New Years's clown, than a Mary Kay facial lady.

The family came to watch Alice open her Christmas gifts.  The hospital served a nice Christmas dinner to all.  Good times!  The kids thought it was awesome.  I loved it, I didn't have to cook it, clean it, or pay for it.  

Working on our alphabets..she loves

Calamine lotion...the pink beard.