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.

Friday, November 22, 2013

A Week at Once

Boo Boo the Bear

This is a darling video the hospital produced...they wanted Alice to be a part of it, and were willing to wait for her to get better to come film. Enjoy!

I have fallen behind with posting.  I am not surprised, here at home my time is limited.  While in the hospital I could find more gaps of time to post while Alice was napping or asleep for the night.  I hope to post again once a week, here on out.

So here is what has happened this week.

Monday Nov. 18th (Day 32)--Clinic

ANC 4700, Hemoglobin 10.9, Platelets 123

All things looking up!  The doctors increased her feeds to 15ml/hr.  Her CMV increased slightly, not to worry as we have dropped her Foscarnet to twice a day.  We hope to keep it at twice a day and not three times.  CMV can be a real bugger if it gets out of control.  For Alice her CMV numbers are very manageable.  No infusions needed in clinic.  It was a smooth and fairly fast visit.  Our first visit back to clinic in nearly six weeks; a nurse had pointed this out to us.
Leaving Clinic and she refused to wear was raining/snowing outside.  Crazy girl.  She at least agreed to let me wrap her blanket around her legs.
She wanted us to notice her hairdo.

Helping Aunt Amberly put up her tree.

That next to the tree is Alice's IV pole.

Helping Dad rake leaves...not really.

Who would have known this 'handy cart' would be so fun.

Tuesday Nov. 18th--Good-Bye NJ tube

Alice said good-bye to her NJ tube today, she was happy to see it go.  Unfortunately we hadn't planned to pull her feeding tube, but it was clogged and we had no choice.  I spent at least a total of 4 hours today trying to unclog her tube.  When we increased the rate of the feeds in clinic yesterday it allowed the feeds to complete before her morning oral medications are scheduled to be given through the tube.  The medications are very sticky and even flushing with the proper amount of water, the line clogged.  Normally the feeds help push the remaining residue through the tube; something to remember next time when we change the rate.

We called the doctor and we decided to leave it out until clinic next week.  She is keeping her oral medications down nicely and surprisingly she'd rather take them by mouth than in the tube, at this point.  I really didn't like the tube myself, however, we want to get her off TPN asap (TPN is hard on the liver), so therefore she may need another tube to bridge the gap between her diet now and what it should be without TPN.  She isn't eating enough calories to be off TPN and tube feeds yet.  The next tube we place will most likely be a NG tube (stomach), in which if it clogs or is removed we can replace it at home ourselves.

No Tube :)

Wednesday Nov. 20th--Natalie

Today Natalie had an appointment with Neurology.  We saw Dr. Bale, and reviewed her current tapering schedule of Keppra.  So far so good.  We hope to avoid trouble as we come completely off Keppra, of course still on Oxcarbazipne.  Natalie actually cooperated well for this appointment.  I was so impressed and proud of her.  Normally she is very upset and unwilling to communicate with the doctors...she is burned out; but surprised me today.
Natalie couldn't wait to get back from her doctors apt. because she had plans to make Alice a princess club (behind the couch).  Only people who are wearing pink, purple or have a dress on can come in the club.  

Thursday Nov. 21st

I think Tyler and I are slowly acquiring a routine, I just noticed that Alice's backpack of clothes from the hospital has yet to be unpacked. (No wonder I can't find those particular outfits)  Had it not been for Tyler's mother who came to help one morning nothing from the hospital would have been unpacked.  I spend all day running around with pumps, medicine, saline flushes, alcohol swabs and more in my hands; setting them down and not remembering where I put them; forgetting what I started and didn't finish; forgetting to pick up a child from school and sometimes even forgetting to brush my teeth for the day...okay I'm sorry but that might have been too much information.

I did manage to make chicken soup today using a whole chicken.  Alice wanted it, so I made it.  She took two bites and was done.  Then she wanted rice, potatoes, tomatoes....the list goes on.  Tyler and I will go to great lengths if it means she will eat.  Some foods hurt to eat, others just don't sound good...but we spin circles around her.  In a few weeks this phase will get easier and life will slow down.

Her favorite food right now is a Kipper Snack, with a side of fresh cut tomatoes...I wish I could eat this way, I would be much healthier.  Go Alice!!  When she can't finish her kipper snacks (sardines) then Evie or Blair will clean them up...sloppy seconds.

We have Grandpa Schellenberg to thank for introducing the kids to Kipper Snacks.

Saturday, November 16, 2013

Day 29, Coming HOME! and Day 30 at Home.

November 15, 2013

ANC 6700, Hemoglobin 10.3, Platelets 68

The room is packed, we are just waiting for Tyler and the kids to arrive.  Alice's room seems so empty and quiet.  She has been ready all morning.  We have taken walks down the hall and spent time at the nurses station drawing etc.

Total days in the hospital for this transplant (41)...not too bad.

The video of her ringing the bell will be posted later, it's taking too long to download.

Passing Time.
Nurse Emily and Alice drawing pictures.  Emily was our nurse the last time we were discharged from transplant.
Alice and Mary

Alice wanted to make sure her stork was safe in the wagon.

The princess is packing up.

One of two cars..the second was more full with kids than stuff.
Sonam always did a wonderful job cleaning our room.

Holding hands to the bell.

She wanted to use her magic wand to ring the bell.

singing to Alice

singing to Alice

Emily and Alice

These women had a big role is making Alice better.  Brenda NP, Emily, RN, Meghan MD, Jessica Fellow MD.

Alice insisted on going down the stairs rather the elevator, not usual for her, and look who we ran into...Hilary NP.  Hilary is now in another department, but she was part of the BMT team for years and was a huge part of our journey, surely not coincidental that we ran into her.

Everyone wanted to sit by Alice on the way home.  Natalie was the lucky one.
Returning the wagon and having a little fun in the meantime.

Watching their first movie together.

This pile of stuff is a third of the delivery that came for Alice.  I spent nearly two hours with the nurse sorting and preparing everything.  After the nurse left I spent another hour finishing up.  

Alice receives 12 hours of TPN through her yellow central line.  She received 18 consecutive hours of feeds in her NJ tube.  She has five different infusion in her blue central line throughout the day hours.  In a 24 hour period, Alice is completely unhooked from everything for six hours.  We will make the most of those six play play...move move move, and we hope to keep those precious six hours during the peak hours of her awake time.  Alice currently receives 10-15 oral medications twice a day...depending on the day.  Right now she takes them through the feeding tube, but surprisingly she has a very difficult time with it. I am tempted to try giving them to her by mouth instead....Phew, this is a full time effort.  In just a few weeks things will begin to drop off the list and her care will be less intense.  Until then I plan to go nowhere!

We are thrilled to have her home and are loving every minute of it.

November 16, 2013

Well, we survived the night.  It could have been worse.

Alice is stronger by the minute.  She is moving around more at home, and has eaten a bit more than if she were in the hospital.  She ate some spaghetti and meatballs, rice and chicken, yogurt, and a chicken nugget...pretty good Alice.

She wanted to go outside to the mailbox so was a snowy cold day, but she was plenty warm.

Thursday, November 14, 2013

Day 28, Packing The Room

ANC 5900, Platelets 67, Hemoglobin 10.4

Alice is ready to head home.  She is excited to be with her family.  After many many hospital stays stretching over 8 1/2 years we have learned a few in which I would like to highlight.  I am fascinated by the concept of accelerated healing when the mind learns that it is time to be better and go home.  Both Natalie and Alice always seem to make huge improvements when they learn that home is just days away.

Earlier this week I was very apprehensive about bringing Alice home, she seemed to be far from ready, once the subject (home) was addressed, she made even bigger improvements. I slowly began to feel better about her coming home.  Truly there is no place like home.  I cherish the comment Natalie shared nearly two years ago when she was preparing to go home after transplant.  She said, "Something inside of me tells me I want to go home."

Tyler and I know from experience that it will be very difficult to care for Alice around the clock.  It's a huge adjustment to care for a post BMT child.  Here at the hospital we are parents, we help assist nurses when needed, but when we are home we are all of the above full-time.  I remember so clearly the struggle of finding a routine with all the children in the mix of the nursing responsibilities.  Each time we found a routine, it seemed as though it was back to the hospital and all that hard work was lost.  I feel confident that this time we know what to expect and sometimes this is enough to make it easier.

Just before posting this I had an overwhelming feeling hit me as I looked at Alice sitting in her bed.  It was a feeling of accomplishment.  We have just endured a HUGE accomplishment.  Nearly six weeks ago, I clearly remember telling our dear friends Max and Claudia that I wished I could fast forward the clock to this moment...and skip all the pain and hardship in between.  Well, we have arrived; it happened and all is well...time to go home and continue healing.

Alice's room is almost bear.  It has been a great time overall and we will miss many things about being here in ICS. Mostly the people.  Plenty of clinic visits to come, and perhaps some visits to ICS, but we can tackle it one day at a time.

Most importantly we are so thankful for those praying for us, this strength is ever so tangible and continues to lift us up.

--I will post the video we take of Alice ringing the bell, likely I won't have time to post tomorrow, but will the next day.

Alice called home to ask if the family will come to watch her ring the bell tomorrow.  I missed the beginning of the conversation, but the first thing she said to Natalie who answered, was, "Natalie, how are you feeling, are you okay?"

Wednesday, November 13, 2013

Day 27, IVIG---ANC 8100!

ANC 8100, Platelets 63, Hemoglobin 11.0

A new record high with 8100.  I have to admit I almost felt worried when I heard how high she was...still in normal range, but her red cells had dropped yesterday and her platelets some today, so I got thinking maybe her ANC is getting too high.  This is what you can see in Leukemia kids.  Low red cells and platelets and very high white cells.  
Alice's numbers are very good and safe...I had to double check with the doctors to make sure they weren't seeing any trends that pose a threat; Phew...sometimes knowing too much is bad. :)

Today Alice received IVIG.  This will help protect her from a variety of illnesses.

Kennidee came to play for a couple hours.  Alice enjoyed her visit, they made some cute crafts and stayed busy.  Thanks Kennidee!

Alice has been very playful and happy.  I have been away from her for four nights....too long!  I'm back now and ready to bring her home.  They say this Friday is the day.  My time at home these past couple days has been spent organizing my house and getting things in order for her to come home.  Many women from the neighborhood/ward have come to help sterilize the whole house.  What a comfort to us and time saver.  We are very thankful.

Eating a Honey Crisp apple...only one bite, it hurts.

Natalie had a neuro psych evaluation today.  She was tired and very little was accomplished.  Every type of appointment no matter how big or small is always exhausting.  We are tapering off one of her seizure medications and this evaluation could be helpful to us in the future.  Hopefully she will behave better next time.  I can't imagine how burned out she is feeling....wait, maybe I can. ;)

Looking forward to having my husband and children all in one place!


Tuesday, November 12, 2013

Day 26, Blood

ANC 6200, Platelets 71, Hemoglobin 7.7

Alice is slowly adjusting to the NJ tube.  She still does not like to take her medicines through the tube...we think she feels the stiffening of the tube as the medicine passes, it bothers her.  Even going very slow is hard. She will get used to it more each day.

She ate a bite of mashed potatoes and she ate an olive.  Good work Alice!  She was proud to announce that it stayed in her tummy too.

Alice's red cell count dropped below the threshold, therefore she required an infusion of red cells.  This is still normal, even though she has been independent of red cell infusions for a while.  Ups and downs are very common.

Aunt Amberly came to stay with Alice for the night, they had a great time.

There is talk that Alice will come home as early as Friday.


Monday, November 11, 2013

Day +25 & Feeding Tube (NJ)

ACN: 4500 Hemo 7.9 Platelets 62

This morning when the doctors made their rounds they were still encouraged with Alice's progress even though her ANC went down a tad. There was talk about her needing blood because she dropped below 8.0, however the doctors chalked that up to the types of meds she is on.We decided to not give blood in to see if she can muscle past the drop. Another issue discussed was her mouth sores and the pain she continues to have when she takes her oral medicine. She is not eating enough. If she can not eat more, she can not be discharged from the hospital. Not to mention again how tough it is for her to ingest her oral medicine. So, the discussion of the day was whether to insert a feeding tube through her nose. The benefits would be: both food and medicine can be administered through it, and she would be able to go home with it and without having to show the doctors she can swallow food. I sat down with Alice and explained in detail the pros and cons of the tube. When I finished explaining, I asked, "Alice which would you like to do, the feeding tube or show the doctors you can eat and do more oral medicine?" She quickly said, "Dad, I want to do the tube." So we did. She did quite well with the process even though there was no anesthesia given. It will be a pain for the first couple days, but she should get used to it. In addition it will be a much easier experience giving the medicine through the tube instead of negotiating with her for an hour both morning and night to take her oral meds.

Originally we talked about a NG feeding tube.  This is easily inserted by a nurse or mom and dad.  An NG tube however will not entirely help.  Her tummy is still healing and will likely not tolerate much in it.  Therefore, the NJ tube bypasses the stomach and delivers the medicine and nutrition into the small intestine.  Lisy was happy to hear about's better for Alice, and she won't barf up the tube several times a day.  Lisy was not looking forward to replacing the feeding tube over and over.  Alice will gradually get used to the tube with time.

*A nasojejunal, or NJ, tube is a small tube that is passed through the nose and guided into the jejunum (small bowel). The tube is used for feeding children who cannot or will not obtain adequate nutrition orally.

I know lots of kids read this blog, so I like to add as much medical information as I's a great way to learn while doing something you already do.  I'm guessing there are some future doctors and nurses out there. :)--Lisy

Today she really enjoyed the emails sent from all of you. I read each one to her. It really lifted her spirits before we went down to get the feeding tube inserted. Thank you everyone for all the words of encouragement you continue to give. It lifts Lisy and I up so much to know how much you care for our family.

The Feeding tube inserted was a NJ tube, which means it's more permanent and requires to be placed in fluoroscopy,  where the doctor can see that the tube is being place securely into the small intestine.  

Sunday, November 10, 2013

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

ANC 5000, Hemoglobin 9.0, Platelets 69

Alice tried three bites of chicken noodle soup 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'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.


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.


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 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.


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. ;)


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 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.


PICC lines can be removed by a nurse at the 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.