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, March 23, 2014

A Stinky Ride Home

A quick week's overview--and for my records.

--Thursday Mar. 13th:  Natalie has fevers and rashes on her hands and wrists...she ate some red licorice.  Not sure the source of the fever.
--Sunday Mar. 16th: Alice is admitted to ICS with fever.  Natalie's fevers continue.
--Monday Mar. 17th: Alice received treatment #4 for Adenovirus, the kids didn't catch a leprechaun and were very disappointed. Natalie's fevers continue and has a small seizure.
--Tuesday Mar. 18th: Alice receives blood (hemoglobin of 7.9) and IVIG.  Natlaie's fevers continue.  Natalie has an appointment with Neurology...more details in the coming text.
--Wednesday Mar. 19th: Alice receives treatment #5 for Adenovirus, Natalie has an appointment with Dr. Burr for her brain's functional psychology.  Alice comes home from the hospital.
--Thursday Mar. 20th:  Lazy day at home, very unproductive.  Blair comes down with a fever.
--Friday Mar. 21st:  Alice receives treatment #6 for Adenovirus, Natalie is finally feeling better.  Blair is still home and acquired a new pet (Bold Jumper Spider), Amber had to catch it.  I am too chicken.

Alice's ANC has been averaging around 1300 for the past week.  A few medications have been dropped. :)  Neupogen is twice a week.

More Detail.

Two weeks into Alice's treatments for Adenovirus, and so far so good.  Of course she had the fever Sunday morning that took her back to ICS.  She was given IV antibiotics, fever never returned, and things are looking okay.  Alice was in ICS for 4 days, seems a bit long for only having the one initial fever, however, she was kept there because she required IVIG and blood, along with her Monday and Wednesday Adenovirus treatment.  I was so glad she received IVIG, it will be helpful in fighting Adenovirus. Alice came home from ICS Wednesday evening.  I wish to post a little something about our ride home in the coming text....first, here's a little information about Adenovirus.

Adenovirus infection mostly causes illness in the respiratory system, however can cause other problems such as gastroenteritis (diarrhea and vomiting).  Could it be that the Adenovirus is the main contributor to Alice's GI issues?  Hopefully we will see some improvements in her gut as this virus clears out.  This virus is something she has tested positive for many times over, although this time it's different. Why?  Because the Campath treatment she received prior to her recent transplant makes viruses more challenging to clear.  Also this virus was somewhat over looked as the team was focused on her Shingles and CMV, all the while Alice's Adenovirus levels were rising.  The testing process to quantify a virus level are not routine or standard, in the past it hasn't been much of a threat.

The adenovirus treatment requires Cidofovir, a strong antiviral.  Cidofovir can be very difficult on the kidneys.  Because of the threat to the kidneys this treatment is followed by plenty of IV fluids, fluids during and plenty afterward.  It's an all day process.  Also Alice is required to take Probenecid three times a day orally.  It's a terrible tasting drug, but also helps protect the kidneys...thankfully this medication is taken only on the days of treatment.  Her kidney functions are being followed closely and seem to be well.  Today is her 6th treatment with three more to go next week.  We hope this will be all, but there is a chance she will need more rounds...depending on her levels.

The ride home from the event to never let happen again.  As I was loading Alice into the car, she informed me that her diaper was very wet (note: I had just changed a very wet diaper before we left the room).  I took it off and started to put a new diaper on her; she convinced me that she didn't need to wear a diaper for the ride home.  I thought about it for a second, after all she already had many wet and poopy diapers earlier in the day...surely she could manage an hour drive home without needing to "go".
Although, I said again to Alice..."I really think you should wear one".  Alice replied, "Mom, I'm okay, I promise I can hold it if I need to."  She really didn't want to wear a diaper.  I then said out loud to myself...."I should just make her wear a diaper."  But here goes to letting her have a little freedom from the diaper.  I gave in to her request.
Five blocks into our drive...still on Foothill Drive.  Alice starting coughing, I quickly handed her the pink bucket.  She vomited a fair amount, I wasn't sure if she managed to produce anything from the other end, but pulled over just to see.  Sure enough she had a major blow out.  She was covered.  It was everywhere, Including covering the ends of her central line.  Oh No!!!  I used every wipe and tissue I had available to clean her the best I could.  It was a disaster.  I was worried about her line becoming contaminated...and under my breath I expressed a great deal of frustration towards my own pathetic decision to leave her diaper off.  Alice said to me, "Mom, you should have listened to yourself".  Ha Ha....I then reminded her that next time I won't listen to her.
Upon arriving home we did a very thorough job cleaning her line and now we are crossing our fingers that during the next few days she doesn't develop a fever with a terrible line infection.

Alice's found a new dressing room.

Natalie visiting Alice after her own doctors appointment.

So happy to be with Alice.
Evie loves to visit Alice and all the hospital's toys.

I made Alice some YUMMY homemade salsa...she loves it.
See Recipe below.

Drinking the salsa healthy, apple cider vinegar and raw olive oil.

She ordered three bags of chips and ate them all....should have packed a lunch!

Natalie wanted to stay after her doctor's appointment and go home with Alice.

Home and doing the usual thing...I hope these days pass quickly.

Natalie's Update

We have been keeping a record of Natalie's fevers and diet.  It seems as though her fever pattern is consistent.  Every three-four weeks she runs a continuous fever for five-seven days.  Not usually are we able to diagnose anything.  The neurologist feels it is something systemic possibly and therefore we will be working with immunology to sort out the source of such fever activity.  Nothing may come of it and something may come.  I often wonder if her celiac diet could have anything to do with it.  Eating wheat or gluten accidentally should not create fever...however, we think of everything.  Also the neurologist and I talked about doing some more extensive testing on her brain to isolate the source from which the seizures there are two locations of damage on Natalie's brain.  If the source is due to scar tissue there is a chance it can be removed and stop future seizures.  This was only a brief discussion and surely not in the near future or possibly at all.  There would be plenty of considerations to take into account with such a process.  The challenge with Natalie's reoccurring fevers are the risk of seizure she has with every fever.

More to come, but for the most part she is doing well.  Tyler and I were discussing how much she has improved both socially and emotionally.  Natalie is determined to succeed...this will be her most valuable asset.

Treatment in Clinic

Helping Mom make Portuguese soup...YUM YUM!

Karen's Fresh Garden Salsa
8 tomatoes chopped small
2 cucumbers chopped small
2 bell peppers chopped small
1/2 large white onion chopped small
mix 1/4 cup apple cider vinegar and 1/4 cup olive oil...add to vegtables
add: salt, pepper, and garlic powder/salt to taste.  It takes plenty of salt.

Perfect with tortilla chips.  FYI--very addicting and refreshing.  Optimal of course with your own grown garden vegetables.  It's so good you could eat it with a spoon and forget the chips.


  1. your adventures NEVER end...hmm I must say, would not like to have that horrible stinky ride home!! I am sooo sorry! Just wait though, you can always tell Alice she told you to listen to yourself..even when she's a teenager ;) I hope you figure things out with crazy! You guys are in our prayers every single day!!! Heres hoping for a very happy and uneventful week ;)

  2. I love her like LOVE HER. What a cute video I LOVE YOU TOO.

  3. Could Natalie's fevers be periodic fever syndrome? Here's a link to information,

  4. Great post. This video is really informative but painful. Thanks for your post.
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