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, February 28, 2014

The Croup

Yesterday I was outside raking up leaves. It was an unseasonably warm day and it made sense for us to be outside and enjoy the weather. The kids were jumping on the trampoline,  and while I was raking the leaves Alice spiked a fever. So, I took her up to Primary's. Turns out she has a case of the croup. It took only one cough for the doctors to diagnose her. It resembled a barking seal. Keeping her healthy is such a struggle; it weighs heavily on Lisy and I. Nevertheless, these are the cards we have been dealt, and we will play the best hand we can. There will be more blood draws and tests in the next couple days. We will be sure to keep all of you updated.

Saturday, February 22, 2014

Clinic and more Blood

I thought clinic this week would be much faster than it was. When the doctors came in they seemed to be very positive in their report from Alice's numbers. Her ANC was at 2.6 (2600) and her platelets were looking strong at (178). However, her Hemo numbers were much lower than expected (7.4)  The doctor's thoughts were that because Alice has been on so much mediation her blood counts suffered. Or, she is hemolyzing again. If it is the latter it would not be a good sign for her. They drew more samples and will let us know in a couple days. I will admit that it sets me on edge to the possibility that her body may be fighting itself once again. Nevertheless, we will wait for those tests to come back and cross that bridge when we get there. The day however was long. It wasn't until 3pm that a match for blood was made. We made our usual exit from our room into the empty Oncology waiting area late in the evening. We were both exhausted; me from waiting and helping, Alice from the meds and receiving blood. It was good to at least be able to come home and not have to stay overnight.

I must also note that Lisy sent me up there with a can of Kipper Snacks for Alice. I don't recall if I've ever mentioned my disdain for Kipper Snacks, but I will save that for another post. Luckily I didn't have to crack that can open. The odor alone from those smelly things could make them apart of the chemo family line. Anyhow, the Kippers make an appearance in this time lapse.


Friday, February 14, 2014

Valentine's Day

I must apologize for my tardiness for this last post. Lisy has been on my case to get it done and each time I sit down to do it I either feel a tug at my shirt from Evelyn or I'm putting out a fire between the three oldest. Our last post was while we were in the hospital. Thankfully this time it really was just a small virus Alice had caught from me, and the stay only lasted a couple days. Her fever lasted the first night and never came back, so the couple days we were there were occupied by the usual vomiting and watching movies and playing games. I was glad to come home, but sad to see the ice rink  was melting. Its been such a weird February, far to warm for a rink to stay frozen. We will have to take it down next week and store up the boards and plastic for next year.

This past week has been really tough on Natalie, as she has been sick too. Her virus has caused her threshold for seizures to dip and on a couple occasions we have felt it necessary to utilize the Versed. All day she would complain of head feeling "funny" but at the same time trying to help us understand that it wasn't a headache. The "feel funnies" would occur every three minutes or so. It was so distressing to her that she could not focus and would become dizzy. Both Lisy and I feel these episodes are minor seizures. They worry us because her current seizure medicine doesn't seem to be working. We were relieved this morning as she woke up feeling much better and has not had an episode. Perhaps her virus has passed and therefore her seizures have stopped. Its so hard to predict what is going on with her when she becomes sick.

Clinic for Alice was on Thursday. Her liver counts are looking good and her ANC was at 1400. It was a rare trip to clinic without her having to stay all day. They were home early afternoon and it was welcome because I was loosing the battle with the girls. Natalie was still sick at the time and Eve was wearing my ears out with her constant yelling. When Lisy gets home we always look at each other and exhale with exhaustion. Its a look that says, hey I know you are tired, but saddle up because we still have eight more hours of care for this family until we can go to bed.. Even when we are able to go to bed we know it will only a couple hours until its time to get up again and change medicine or clean up vomit. I wonder sometimes when this chapter will come to a close in our lives. Its certainly been worse, and I know we could not do this without the help and love from all of you,  but I still wonder when it will be over. What can I say? I'm human?

Shifting gears now, its Valentines Day and...... its my Birthday. Hooray. I'm 37.  Do you ever remember when we were young and we anticipated for days in advance the excitement of our birthday? I'm mean, it wasn't like Christmas, but you were pretty excited to have your own personal day. I've always enjoyed having my b-day on Valentine's Day. Even though growing up I would always get at least two people out of the day who would make the comment, "oh that must be why you have red hair!" Good grief. I will say, that comment would usually come from people at least 65 years and older. Come to think of it, I never have understood why there was this fascination from older people with red hair? I've grown up with it, used to bother me, but not much anymore. I remember in South Carolina, when my family would walk into the McDonald's off of Garners Ferry and Wildcat Rd. I would be excited to eat out but hated how all eight of us streamed in there with our red hair. I'm sure it looked like a PR stunt. As if we were the offspring of old Ronald himself. We would get the looks from everyone. Some would smirk and others take a small gasp of what fortunate event it was to see what looked like a bunch of leprechauns eating out for the night. It never failed, there always seemed to be one old lady who would come up to one of us and exclaim, "I used to have red hair just like you!" Or, I have a grand child who has red hair!" I would be cordial and give a half hearted "thanks." However, in my mind I would be thinking up a sarcastic thought of "great, now go back to your McSalad, and try not to drown in your Thousand Island dressing."

 It really is funny to think about it now because my hair is mostly gone and what is left really doesn't have the flair it used to. So every time I see a kid with bright red hair I think, "hey, I used to have red hair like that too!" One day I recon, I will be old enough to tell him/her....but not yet. I digress. I hope all of you have a wonderful Valentine's Day.

Me and my bro. The movie Labyrinth was out and I was going for the David Bowie look. I know, I know, so close. 

On a more important note, certainly more important than my B-day. We have been notified of a family who is going through the struggles that life brings. They have a blog too and are doing a fundraiser for their child who suffers from a genetic disorder that is life threatening. Here is the link Our hopes and prayers are with them during this time.

Thursday, February 6, 2014

Back to ICS

Last night after Lisy and I finished a discussion about Alice's slow progress I said, "at least she hasn't had a fever since we've been home." We should have knocked on wood. I thought nothing of it until this morning around 6:30 we noticed Alice was having a struggle breathing through her nose and felt warm. Her temperature was 103. My eyes rolled to the back of my head and I cursed the moment I blurted out that she hadn't had a fever yet. I must admit I am more at fault for this hospital stay than any because I had come down with a head cold earlier this week. My sinuses have been reeking havoc on my head and each time I sneezed my head hurt so badly that my knees would buckle. We have to assume that after all we could do to not let her get my cold, she got it. So, around 7:15 we headed out to what will be at least a couple days stay in the hospital. She is in good spirits and we will have to wait until her blood draws and nasal swab results come back to see what she has and how we will combat it.

So far, she is on IV antibiotics, cultures were drawn, and everything else has remained the same.  They did run a nasal panel, likely she has some type of cold virus.

The only thing that looks sick to me is the straw up her nose. 
Hopefully she will be home soon. 

ANC                       0
CMV                      a trace
Nasal panel results   Rhino
Eating                      getting better    


Tuesday, February 4, 2014

Life at Home

It has been 8 days since Alice was discharged from her 53 day hospital stay.  The first four days were insanely overwhelming.  Never a moment of relief for her nor Tyler and I.  She requires immense amounts of time and patience.  Thus, again I am behind on the blog.  In the meantime we have been to clinic which I will post counts, etc.

Most importantly and despite all the challenges, we are SUPER happy to have Alice home and to be together again.  I truly can't imagine what it might be like if Tyler and I didn't have each other to tackle our daily challenges.  Again and always our hearts are turned to YOU who have made our life possible to manage.

Okay, here's what is happening.  Alice is getting around much better...up and down stairs, running, playing, wishing to eat and loving being home.  She has a VERY long road ahead still.  We are finding new challenges as the days pass, also we are overcoming little pebbles along the way which are worth celebrating.

Our major struggle presently continues to be her gut.  For unknown reasons her stomach isn't emptying into her small intestine and so forth.  We consistently discuss the possibilities and causes but nothing has surfaced, causing us to still question and wonder what to do.  The doctors aren't sure, but continue to encourage us with patience and time.

Alice returned to clinic on Thursday Jan. 30th.  We learned that she needed blood.  This was unexpected, which made the day long.  Good News---her CMV reported undetected, labs have been known to be inaccurate in the past so I wasn't going to celebrate...I requested a confirming lab to be drawn.  The confirmation lab paralleled the first.  YEAH!!  The doctors told us to cut back the gangcyclovir infusion to twice a day.  This will allow all of us a bit more sleep.  Her zoster virus shows a slight detection but nothing to fuse over.

Counts Jan 30th:
ANC 2700
Hemoglobin 6.6
Platelets 134

Friday Jan. 31st.  We called the doctors because Alice will vomit up to 12 times a night and several times throughout the day.  Her nausea has always been bad, but this is obviously not right.  We requested that we stop the TPN (IV nutrition).  Immediately she stopped vomiting all together at nights, once the TPN was eliminated.  Alice still vomits during the day on average 2-6 times.  It is very tricky getting all her oral medications to stay down between such nausea.  Currently she is taking between 10-12 oral medications, in which some are 2-3 times daily.

Clinic on Monday Feb. 3rd.  Doctors have gone back to neupogen everyday because her white count dropped.  Her liver function labs are elevated...not sure why.  Tyler and I think it is due the TPN.  All the while she is taking a TPN holiday she is still on IV fluids to keep her hydrated and in balance.

Counts on Feb. 3rd:
ANC 100
Hemoglobin 11.9
Platelets 87

Alice will go back to clinic on Thursday Feb. 6th.  Hopefully her CMV level will be better.  She is such a cute little trooper through all this.


First time on the ice

The mask was her idea of course

She ate half a kipper snack in clinic and for the first time in months food stayed in her tummy...looks like kipper snacks are the key.