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, November 10, 2013

Day 24--ANC 5000...WHOA!!!

ANC 5000, Hemoglobin 9.0, Platelets 69

Alice tried three bites of chicken noodle soup today...it stayed down.  She later asked for a pickle, but it hurt too bad to eat it.  Certainly her mouth must still be very tender.  Grandpa Fish has been with Alice today, they went for a walk outside.  It was such a beautiful day, I am happy they went outside.

She walks so cute..it's like a duck waddle.  I giggle when I watch her walk fast.  I can't wait until she can run.



Tyler and I were able to get to church on time today.  It's not saying much for us because church is at 1:00 p.m.  Well actually he was on time with the boys, the girls and I came during the opening song.  So technically we were partly on time.  I was feeling good about that.  The children were part of the sacrament meeting (primary program), they sang and shared their parts well.  Natalie however, missed her part and most of the program.  She had an asthma attack during the meeting so I took her home to care for her.  I was thankful I had oxygen and a nebulizer.  I think it was half anxiety inflicted…understandable.

I have been thinking about a few things lately, and have decided to share them.  I mostly want my kids to read this in 15 years or so when they are parents.  It may prove to be helpful.  They can learn from my mistakes. :)

First of all, I will admit that being a parent has been hard for me over the past couple months.  Life has been all over the place for us and things have been very un-routine and chaotic at times.  To be more specific I have disliked disciplining my children very much so!  As if this is new information...I shouldn't lie, when have I ever enjoyed disciplining?  It just seems to be more difficult when I am not with them consistently. Consistency is hard enough for me when it is available, now my challenge has grown.  

I keep wondering if I have enough patience for them, sometimes I wonder if I have too much patience and should just spank them when "I think" they need it.  I find that yelling makes me feel good for about two seconds and then I quickly learn that it only heightens the tension and creates a ripple effect of unpleasant mimicking one toward another.  

Some nights ago when I returned from the hospital I started assigning jobs to the children...a dreadful process.    
I know when my kids haven’t worked enough, when they complain about unloading the dishwasher, how easy is that?  Nobody wanted to work, including myself, I was spent.  I have learned many times over, that it is during these moments when our unattended emotions lose control and spill out all over.  Meltdowns for everyone!
Our poor children are strong as they go with the flow during these challenges of inconsistency; however strong they might be...they have emotional meltdowns too.

I of course react naturally (impatience)...isn't that natural?  Once that route doesn't work I decide to try something else...then something else...then something else, all in which involve threats and demands and whatever else I can muster.  This is far too exhausting and such a waste of time and energy.  

Why so complicated...when it is so simple.  I finally decide to think with my heart and not my head.  The real matter is not the petty subject at hand which caused the chaos, but it is simply the matter of taking each of my children one by one and telling them how much I love them and how important they are.  I tell them that even though I am not always home I still think of them every day and wonder what they are doing.  I tell them that I pray for them.  I worry if they are warm at night. I worry if their friends are not being nice at school....all the while I am hugging them.  A hug is sometimes the best discipline.  Usually when all this is done, whatever is left to discipline is far more manageable...and without realizing the dishwasher is easily unloaded. :)  Hmmm...funny how that works.

I shared a story with Matthew about a sweet woman I met at the hospital.  She cleans our room.  She is beautiful.  She came to America to find a better life for her and her family.  Unfortunately she had to leave behind her younger son who was only five at the time.  She couldn't afford to bring him.  She works two jobs and sends money home to her son.  She hopes in 2015 that she will be able to see her son again here in America.  When they meet again he will be 13 years old.  She told me that every night she cries herself to sleep because she misses her baby.  She works so hard and never complains...just smiles.  

Matthew was very touched by this story and realized that he could be strong for a couple days without Mom and Dad together.  He understood that even though our trials are hard, we are SO very blessed.  

I know when Matthew knelt beside his bed to pray that night, he was thinking of that mother and her boy.


Each day is HARD in its own way, but being grateful is what makes the hard EASIER.

Lisy

Saturday, November 9, 2013

Day 23, Happy Birthday Natalie

ANC 4700, Hemoglobin 8.8, Platelets 67

I asked the doctors this morning why Alice's numbers fluctuated so much yesterday.  They said most of the kids on the floor had off numbers.  They think something wasn't right with the lab.  Today's numbers seem more realistic to Alice's trend...and we like them better too.  Either way the numbers yesterday weren't a huge concern anyway.

Another great day for Alice.  Her morphine pump was removed.  She can still have oral pain meds if she needs them.  Levaqin was cut and Cephalexin was started.  Levaqin is a strong antibiotic so I was happy for the switch.

Alice's current challenge right now is her ongoing nausea and tummy pain.  Her tummy needs to heal much more still.  She struggles to keep down water.  Nothing is passing through the gut.  Her tummy needs to start waking up and very slowly she will start eating more--baby steps.  The doctor started her on small dose Reglan to stimulate her brain to start up the stomach functions.  It has given her more of an appetite, but her tummy is disinterested.

If this process continues or worsens, she will have a NG tube (feeding tube) in order to help the process along.  There is always the possibility that she may be experiencing early sings of upper gut GVHD.  We REALLY hope this isn't the case.  Likely it isn't the case because she has not been experiencing GVHD diarrhea that would/should accompany it.

The doctors have reminded us that she received a very aggressive Chemo regimen and we should expect her stomach to act this way naturally.  Nonetheless, they will keep an eye on it.

Natalie had a wonderful birthday.  She seemed so happy and content with the day.  She was anxious for her party to start...really the party consisted of us here at home, Grandmother, Aunt Amber, Grace, Jessie and her friend Shane.  It was simple, which I was thankful for.  I didn't have the energy to plan a big event.  She laughed and laughed, we played the games she wanted to play.  This was probably the best part.  We played Simon Says and Mustard Ketchup, in which was her own origination.

Lisy


Natalie starting laughing about nothing...the kind of laugh that feeds itself.



Alice was on facetime during the fun, however, she became too homesick so we had to say good-bye.  She was so cute when Natalie opened her gift and card.  Alice began telling Natalie what the card read, after several minutes of trying to express herself the main message of the card was...I miss you Natalie.
Alice's gift...The Orange Bouncy Ball


Birthday Pie

Everybody but Grandmother, she's got the camera.

Happy to be together.
Alice had visit from Merlin and Pat.

Friday, November 8, 2013

Day 22--Room Air

ANC 2300, Hemoglobin 11.2, Platelets 43

Good day!  Alice woke at 10:30 a.m.  This is very early for her.  She was ready and excited for our planned outing.  She has decided to use some of her engraftment guessing money to get Natalie a birthday present. Tomorrow is Natalie's 10th birthday.  Alice wrote her a note on orange paper...Natalie's favorite color, then asked if she could get her a gift.  We decided to take our physical therapy session downstairs...to the gift shop.  We found the "orangeist bounciest ball". :)  Alice also managed to find something for herself--of course.

Another big step occurred last night.  She slept all night without oxygen.  This was another surprise to us. She has been on room air since yesterday morning...very encouraging.

We had some great visits today including; Barbie, then Aunt Amberly, Grandmother, and Grandpa.

Lisy



Alice shopping



Paying for Natalie's gift and her own, she decided to surrender the puppy dog for the purple purse.  Apparently when I suggested that she had a lot of purses at home...she didn't agree.



Transferring her $12.00 (engraftment money) to her purse.

Thursday, November 7, 2013

Day 21, A Stroll in the Hallway

ANC 3800, Hemoglobin 8.8, Platelets 50

It was so cute when Alice looked out the window this afternoon (she didn't wake until 3:00 p.m.) to find BOO BOO the bear, he wasn't visible, and her comment was..."I need to look out another window". Luckily the doctors had given her permission to take a walk outside of her room.  So the big event today was a stroll down the hallways on a bike.

She didn't recognize her room when we returned, she hasn't seen the other side of the door for a very long time.

Today when I was giving her a bath, she said with a Ha Ha cackle, "I don't have to wash my hair, cuz I don't have any."  Later I teased her by pretending to brush her hair with a brush.  She laughed and giggled; good things come from being bald...never a snarl to untangle; soon we will be combing the swirl on her back. ;)

Lisy


Boo Boo the Bear, made a special greeting for Alice.  It made her smile.

When we were preparing to leave the room, I grabbed her tennis shoes and clothes, she looked at them and shook her head in disagreement...then pointed to her Cinderella slippers and dress.  Of Course!!  She even had me display them in this manor as she insisted on taking this picture.

Can things get any better?

Mom's make-up...this is a true sign--'Alice is back to business'



Wednesday, November 6, 2013

PICC Removed, Day 20, Record High ANC 4900

Alice  continues to improve.

Record High ANC of 4900!!  Hemoglobin 9.9, Platelets 43.  Her counts keep climbing.  It really is strange to us that she hasn't needed infusions of red cells and platelets more often.  Her last infusion was several days ago.

Her PICC line was removed...they no longer need it.  Each day it seems as though another med is cut.  Her care is manageable with just two lines now.

She tried a bit of jello last night...at least she put the spoon to her mouth, and touched the jello with her tongue.  Baby steps are the key.  We don't want to rush her.  Nausea is still a constant thing.  She struggled with keeping water down today.

When I saw her again today after being at home, I couldn't believe how much better she looked.  Each day she makes improvements.

Lisy


PICC lines can be removed by a nurse at the bedside...no sedation required. She did alright, never easy to remove the stitches.

Bruises from the PICC line

Alice took this picture, after her hard work.

She wanted me to take a picture of her funny face...well this is it--an attempt to go crossed eyed.





Tuesday, November 5, 2013

Day 19

ANC 3900, Hemoglobin 9.4, Platelets 36


Monday, November 4, 2013

Day 18

ANC 3800, Hemoglobin 9.6, Platelets 36

X-ray--Her lungs sound more crackly today, could be due to inflammation caused by white cells rushing to the spots of infection/bacteria that has been in her lungs, or possible increased infection.  Hopefully it is inflammation due to healing.  *x-ray results came back...looks good, they think the crackling is from the white cells cleaning up.

Today Alice's morphine pump was tapered another notch.  She might even be off morphine entirely by the end of the week.

Alice sleeps most of the day, her body is healing and sleep is just what it needs to heal.





Grace came to visit.











Sunday, November 3, 2013

Day 17

ANC 4100, Platelets 41, Hemoglobin 10.3

It just keeps getting better.  It's truly amazing how much she heals in a single day.

I was loving the beautiful fall weather yesterday, and then when we woke this morning it was a blizzard...still beautiful. Alice looked out the window and said, "Is it Christmas?"

Today was nice and quiet.  We played, watched movies, read stories and did manicures and foot rubs.  We love uneventful days at the hospital...it's a good sign.

Lisy

I found this documentary on YouTube and found it so fascinating and heart wrenching at the same time; it is  the real story about the "bubble boy".  It was just published this year in April.  It gave me an even deeper appreciation for what this boy (David) and his family endured. Many people have criticized the Vetter family for allowing their son to spend his entire life in a bubble.  When I watched this I felt like I could relate to the family and felt such empathy for them. The intention of the bubble was short term, however, the plan the doctors prepared for the family fell through, and they were left with no plan...just watch it!  This boy provided the medical world with invaluable information about SCID and even cancer, unfortunately through hard conditions.  I couldn't help but feel immense gratitude for he and his family, I truly believe we have been blessed by his experience.  Here is the link, there are 5 parts, but it is worth watching.
http://www.youtube.com/watch?v=4CFPdUAj41Y

Just Happy

Saturday, November 2, 2013

Day 16

ANC today is 2800!  Platelets 49, Hemoglobin 10.1

Her official day of engraftment is November 1.

Neupogen stopped today.  Meropenem (antibiotic) stopped today and her Morphine dose was reduced.  It is always exciting to cut back on meds;  Still much work ahead, and hurdles to overcome, but we will take any good news along the way and celebrate it.
Alice's mucositis continues to improve, she wants to drink more water.  Since she has been drinking more, she has also vomited more.  It will take a very long time for her tummy to heal and be able to tolerate food. Baby steps are the goal...little improvements are big accomplishments.

Grandpa Fish stayed with Alice last night.  She never likes her company to leave, she enjoyed her time with Grandpa.  I was happy to be back on shift.  I can't be away long.  When I arrived she motioned/summoned me to lay beside her, she wrapped her arms around me for a good hour; each time I tried to get up to silence a pump or call the nurse, she would pull me closer.  I had no interest to move. :)

With the Neupogen no longer on board, her ANC will dip over the next few days, but shouldn't drop too much.

Just since I was here last she is talking more and swallowing with less struggle.  Keep up the good work Alice.

Today when I came to the hospital I came another route through the city.  I drove along South Temple and was in awe of the beauty.  The large trees were bright in color, and every time the wind blew it was a blizzard of leaves...the roads were covered completely in leaves.  I almost turned around to drive the path again.


Lisy






Friday, November 1, 2013

1100--Engraftment! Day 15

Emily our nurse came in this morning to give more good news. I was too anxious to wait and write tonight. Alice's ANC rocketed to 1100! A healthy jump from 400. No doubt the Neupogen is showing its presence in that number, nonetheless it makes her unlikely to fall below 500 tomorrow. So, today very well will be her engraftment day. If so she will be six days ahead of the average, which means the sooner her mouth will heal and the sooner she will be able to go home. I know we have been in this same position before where she shows so much promise and then comes a let down, so it would seem that I should be more cautious to show my excitement. But when you see your child go through so much....well, its just nice to see her recovery is for the time being, ahead of the curve.

Platelets 29, Hemoglobin 10.1

Tyler