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.

Thursday, October 31, 2013

Halloween, Day 14

ANC is 400 today.  It is likely that she will be at least 500 tomorrow (day 14), which means tomorrow is engraftment (November 1st)!!  If she maintains a level of 500 or more on Saturday (day 15), then Friday (day 14) is official engraftment.  Did any of that make sense? :)

It has been so sweet to listen to Alice begin to talk a bit more.  I love the conversations we have together...especially when she is procrastinating her mouth care and oral medicines, she will think of anything to escape it.  Two nights ago we had a struggle getting her to do her medicine.  Myself and two nurses working together to complete the task...eventually she said to all of us, "calm down, calm down,"  when in fact she was the one needing to calm down.  It was so funny.

It was fun to see many of the hospital staff in costume.  Alice enjoyed watching.  She wasn't feeling the energy to join the excitement, but happy to display her costume on the bed to look at.

This is a hard picture to see, but this is what she looks like each morning when she wakes, before we wash her.  This picture actually looks better than some others.  The thought of her sores healing is more than comforting.  

Mimi (Red), Alice, Irish (Dorothy)

Dorothy and Todo

Trish and Nancy

Big Chief and Little Chief

Ninja (Blair) and Purple Man (Matthew)

Witch Grace

Wednesday, October 30, 2013

ANC 300, Day 13

Another day brings good news.  White count keeps climbing.

Her breathing at night is very loud and she drools everywhere.  The loud breathing is a sign that her throat and mouth have white cells healing and recreating the cell linings...the inflammation from this process is causing her to breath loudly.  If this is what it means, I love that sound. :)

Physical therapy played some games with her, which required her walking around the room a little...every little bit helps.

Aunt Amberly came to visit...she didn't want her to leave, again.  She and Amber got a good laugh at the spooky Halloween house I put together from graham crackers and frosting, Burchalls brought it to her yesterday.  It kept falling apart on me, Alice laughed and laughed each time the walls fell over.  Finally when I finished it, she looked at it, then insisted that I redo it...not good enough.  So we gave it more time for the frosting to dry before attaching the roof again.

No blood or platelets today.  No fevers in the past 24 hours.

We are praying this trend continues, as many of you thank you!


Tuesday, October 29, 2013

Good News!! Day 12

Tyler called me at home this morning just after I had dropped the kids off at school, I had been up since 4:00 a.m.  I just couldn't sleep so I decided to start my day early, nothing productive came from it, until of course I received Tyler's call delivering the news I so desperately wanted to hear, but surely wasn't expecting so soon.  Alice's ANC is 200 today!!

This is a shock for us and for the doctors.  I wasn't sure if what I was believing was really true, could it be?  It's only day 12 and she is already showing sings of engraftment.  It's possible that she could engraft over the weekend or into the beginning of next week.  This is much sooner than we anticipated.

Honestly I get teary every time I think about it.  I feel like crying really hard because I am so happy and relieved.  The fact that she is already producing white blood cells is huge.  This means sores will begin to heal, even in the next three days we will notice a difference in her pain levels.  If I could describe my feelings right now in a familiar setting, it would be like a child anticipating Christmas morning, or driving into the Disneyland parking lot....times ten.  I am SO EXCITED, We are SO EXCITED!!

I switched places with Tyler today as planned; when I saw the nurse practitioner, I had to ask more questions because I just wanted to talk about the good news in more detail.  Her doctors feel like it's happening so fast because she received a very healthy dose of stem cells from the donor...the donation was considered "packed" with stem cells.

Today was good, despite the fact that Alice spent most of the day grumpy.  Little things were making her mad easily today.  When Irish our nurse came in to tell me that we needed to change her dressing today, I thought, oh my, she is already so upset, this is not going to be good--well Kevin and the Burchalls came to say hello...just in time.  When Alice heard that they had arrived, she requested that Kevin hold her hand during the dressing change.  He told her stories of the crazy Turkey he had growing up, it seemed to work quite well.

She had a lot of fun and even laughed plenty with her changed the rest of the day for the better.  I tried to capture some of the fun in the video.  If you listen carefully she says the word idiot.  She called me a little idiot today.  I was surprised, and I don't think she even knows what it means, she heard it on Despicable Me.  We had a little chat about using better words, but it still gave us a giggle.



Britta, Alena, Seth, Kevin, Lori, Sydney, Alice and Kate.

She sat this way for a while, it was probably just easier to leave the tissue in her nose rather than continue to wipe it...don't we all know what that is like.

Monday, October 28, 2013

Day 11

When I came up last night Alice was disappointed. She wanted her Aunt Amberly to stay and play games. She was also thinking her mother was coming up too, so that didn't help my popularity either. The night was filled with pump alarms and waiting beside until Alice fell asleep. She needed a healthy dose of her morphine last night to help her get comfortable. This morning I woke before her and found her mouth was caked with blood. I didn't want to wake her because she may have just fallen asleep. It looks bad, but I wanted those of you who have followed our girl's progress for so long to be able to see more of what she is going through. Times are tough for her, but she is still able to giggle with her mouth closed when her Dad sings along with the "Little Mermaid's, "Part of Your World." No, I do not plan on getting footage of that:)

More Platelets today.

                       Keep and eye on the Ladybug at the top of Alice's Pillow.

Sunday, October 27, 2013

Day 10

Alice had a decent night, she is adjusting to the nasal cannula to the point that if she takes it off in her sleep and I hear the oxygen monitor alarm, I tell her to replace it to her nose and she will do it in her sleep, almost automatically.

During the day when she tires of the tube in her nose, she will slip it to her forehead; again when the machine alarms she replaces it to her nose with little coaxing.  However, the goal is to help her take in deep breaths to expand her lungs completely enabling the airflow to clear the small spaces in the lung where fluid builds up. We hope this and walking more will avoid unnecessary pneumonia.

The next adjustment is helping her learn to use the suction device that will clear her mouth; she will not swallow the saliva, due to immense pain from her throat.  Currently she spits into the bucket or a tissue every 30 seconds or so...sometimes holding it in her mouth for long periods of time.  I think of how badly I dislike going to the dentist and not being able to swallow...I can't imagine that day after day, night after night, with all the added sores and pain.  Poor sweet Alice.  Soon, it will heal...soon, maybe as soon as two weeks from now.

She received more platelets today.

Amber spent the day with Alice, I was able to get home in time to attend church with the rest of the family. It was great to be with them, and to enjoy the meetings.  I know Alice had a wonderful time with Amber. Uncle Adam and Aunt Karina came to visit, and of course Bentley.  Grandpa also came to visit.


So good to see her smile, they are hard to come by these days.

Spending the day with Aunt Amberly.
Aunt Karina, Uncle Adam, and little Bentley.

(from yesterday) Grandmother took this picture...when Alice first saw Grandpa and Grandmother she hid behind the pillow, not sure if she was worried or concerned about her bald head...sweet Alice.

Saturday, October 26, 2013

Spa Day, Day 9

I was so happy when I learned that Tyler would be able to join us today.  I knew we had a big day to tackle, and thankfully our other children were busy having a great time at the Latimer carnival with Mike and Mindi Burrows.  The kids had a wonderful day.  I never received a call from Natalie telling me that she misses me...I know she was happy; I saw a picture of her riding a horse, and that is perfect for her.  She loves animals.  Speaking of Natalie...her recent EEG came back normal--meaning we did not see new issues or active seizures.  We were so relieved and will focus on sorting out her seizure medication to minimize the side effects we believe they are creating.

For today, Alice woke with her hair line nearly three inches receded from where it was when she fell asleep. As each hair fell out it became tangled in the rest of the intact hair creating a mess.  Having dad here to help gave her the extra needed courage to allow us to cut it out.  She felt much better after, and enjoyed a warm bath.

Alice had an x-ray today.  It came back showing some small spots of possible bacteria in her lung.  This could be the source of the fevers.  However, since they switched the antibiotic the fevers have improved.  Our goal is to have her walk and be mobile as much as she is able to help the lungs clear the fluid and stay healthy.  This task is harder than it sounds.  Still nothing has grown from cultures.

Alice received more platelets today.  The doctors are adding Lasix to help rid of the extra fluid that builds up after many infusions.

One more day behind us and looking forward to the days of healing.


Ready for Spa Day!
Tyler said Alice's hairdo looks like an ancient Chinese person. 

At first Alice seemed a bit sad when her hair was out, we weren't sure how to interpret her feelings.  Tyler put her hair on his head to cheer her up, initially she wasn't sure what to think of it, then moments later she wanted us to show everyone the picture of her dad wearing her hair.  She seems to be okay with it all.  I asked her if her head feels better with the hair gone, and she nodded.

Once we cut the hair out with the scissors this is what was left, at this point, it's easier to shave it rather than wait for it to finish falling can be so itchy otherwise.  Tyler did a fantastic job shaving the remaining hair. 

Grandmother showing Alice her Halloween costume.  Grandpa has been away on business, it was nice to see him.  Alice put her head under the covers when they left, because she wanted them to stay longer--to me that was a precious way for her to communicate her feelings.  Grandmother had just picked Grandpa up from the airport, he couldn't go home without seeing Alice, we were happy they made the detour. 

Busy Day in Alice's room.  It was a very good thing dad came to help with today's agenda.

Friday, October 25, 2013

More Hair Loss, Day 8

Luckily today was less eventful than yesterday.  We managed to finish all three mouth cares; Mary, our sweet nurse got in there and made it happen, and yet was so gentle and sweet--we even bathed Alice, she was feeling well enough.  Her PICC line dressing needed to be changed, she did quite well.

Alice and I watched many of our home videos of her as a baby.  She really enjoyed watching them.  She would laugh and ask to play them again.  She even expressed frustration as the boys would tease in the video.  I could see that she was in to them, and fascinated by them.  It made me happy to see her smiling face.  She was a smiley baby, always animated.  Oh the memories!

Her hair has turned into a giant mess.  She won't let me brush it or cut out the dreadlocks that have accumulated.  Once the hair falls out it tangles with the hair still connected and creates a big snarl.  The picture below portrays exactly what I just explained.  Underneath and along the sides are large bald spots.

I have been so content to be here with her.  I love every minute beside her.  She was so cute today when the physical therapist came; she talked more than I had expected.  She even walked around the room, which was on my goal list for her today.  I wasn't sure if she would be feeling well enough, but she did it and was fine.  I am so proud of her.

Good news, her weight has come back down...she was holding a lot of fluid.  In the past day she has lost a pound of fluid.  Her blood pressure has improved.  We are happy.


Thursday, October 24, 2013

PICC line, Day +7

Today was such a hard day for Alice. The mouth sores are just unbearable. She is on a morphine drip now and it seems to help her through the rough moments. She will sleep much of the day, and when she is not sleeping she is throwing up blood into her pink bucket.
Busy day, she needed two platelet transfusions, one in the morning and another in the afternoon.  Alice's doctor's came to me this morning and indicated that she needs another highway for medications.  She receives currently 32 IV meds; and the two lines she has are not sufficient.  There was an opening in fluoroscopy last minute, before I knew it she received a PICC line in her left arm...she bleed so much, thus the second infusion of platelets.
This new line provided an opening for her to receive much needed IVIG.  Thankfully she got this today.  Due to her higher levels of CMV the IVIG was urgent and necessary.
She had high fevers all last night, I was very worried.  The doctors changed her antibiotics today to meropenem and vancomycin.  Nothing has drawn out in cultures yet.
The doctors doubled her morphine intake and scheduled her anti nausea medication more often...all this has helped greatly.  Lisy came tonight--a day sooner than planned, she was settling down by the time she arrived.  She soon asked mom to read her stories and sleep in her bed with her.
I ache for her. At one point in the day and after doing all I could to make her comfortable she finally fell asleep. I watched her for a while and then had an idea to make a short time lapse film of Alice's princess doll paying her a visit and kissing her on the head. I thought it turned out well enough for a first time try. In the least it helped me focus on something else for fifty minutes. I was grateful for the time. As I took her pony tail out today a handful of hair came with it. It won't be long now...... Tyler

Aunt Jessica brought Cooper by to visit and this made all the difference for Alice, she really perked up and seemed to feel better.  This time-lapse shows when Alice leaves and returns from surgery and her playing with Cooper.

Natalie had an appointment with pulmonology today in Riverton, her PFT was great and she sounds fantastic.  This is the first time in a very long time that we have received such happy news regarding her lungs.
Evie had a great time with the you can see...she couldn't stop hugging them.

Wednesday, October 23, 2013

Day 6--Last Day of Chemo for Alice

Alice received her last dose of Chemo!!! Methotrexate, yucky stuff, it makes her feel so sick.  It feels good to know that all the destroying drugs are done and now her body will be able to heal...with lots of help.  The point of her three doses of Methotrexate post transplant (day 1,3,6) are to provide better chances of accepting the new marrow, as it reduces the possibilities of GVHD.

Alice required red blood cells today, and platelets.  Still having fevers.

This is truly a day to recognize...we celebrated with the pink bucket.  It was hardly a party but considering the circumstances it will have to do.

Actually Alice received a box of the most beautiful princesses dresses ever....the perfect day for such a gift. She has them displayed in her room and is anxious to wear them; she points to them each time a new person walks into the room.  She is so proud of them.  Also included were shoes, beautiful shoes, she has been wearing the shoes under her blanket.  Just having them on even while sleeping must make her feel lovely.

I can't wait to see her little bald head while wearing such glamour and beauty.  There will be pictures to come.

Tuesday, October 22, 2013

Hanging in there. day 5

I arrived at the hospital to find Alice sleeping. Lisy said Alice did not sleep well last night because of how uncomfortable she was. Her blood pressure had been high all day. However, at the moment Natalie, Evie and I walked into the room her pressure went down. Our nurse said it seems to happen quite frequently and wasn't surprised to see Alice relax more when she knew her sisters were there. Once Lisy and the girls left Alice became sick and threw up a healthy amount of blood that had been collecting in her stomach. Much of the blood drains from the open sores in her throat into her tummy until it needs to get rid of it. Once she had finished up with that episode I took the opportunity to do her mouth care. It was a struggle, but we got it done. Most of the days now until her new marrow takes will be like the time lapse video below. She will sleep and wretch. I keep telling myself; for her, that soon enough this chapter will have an end and she will look back on this time as one she can use as a tool to better herself and others.

p.s. Lisy added a post from day 4, which we missed.

A few hours of the day outside our window

She sleeps a lot now. When she is not sleeping she keeps the pink bucket close by.

Monday, October 21, 2013

Elmo's Guitar Day+4,

This day might just be the last of her playful self...for a while. Her desire to play is diminishing quickly as the pain takes over.  Surely a child is in pain when they choose not to play because of discomfort.

Her windows of activity are narrowing, and her ability to communicate and talk are decreasing.

The day went well enough, we had some great visitors.  Wes Smith also came to visit.  I suppose Alice spoke more with Wes than she had all day.  Alice played a trick on Wes; she had me place a mouse on his shoulder while he wasn't looking.  He played the part so well and she got a good laugh out of it, and then he told Alice a story when his son played with a real mouse; and I got a good laugh out of that.


The IV tree is growing :(

Koy, Stefanie, and Alice (trying to keep it in...where's the pink bucket?)

She loves to jam with Elmo.

She asked me to video her doing her mouth care...I thought it was interesting that she asked that.  I am glad I did...she is so cute.  It takes a long time to coax her into getting her mouth washes done.  I had to pause the camera a few times while I gave her pep talks.

Sunday, October 20, 2013

Methotrexate, Day +3

I had a hard time sleeping last night. When I called to tell Alice and Tyler good night, I could hear Alice crying in the background. She was in pain, and miserable. I started crying myself. Needless to say this is why my night was hard at home. I almost sleep better at the hospital because I am with Alice and know everything going on rather than home wondering. Tyler takes such great care of her; it's really just me feeling away from the scene.

Early this morning Blair woke me to inform me that I promised him I would teach him how to sew something for Alice as we were headed to the hospital that morning to visit and switch places.

We sewed a little rice bag for her so she would be warm.  He wanted to do most of it himself and did a great job.  Matthew made one too. 

We anticipated attending the 30 minute sacrament meeting at the hospital, the children were dressed in their Sunday clothes; however, we were too late for the meeting.  Thankfully the hospital came by with the sacrament and even provided a primary lesson for the kids.  It was cute.  I was so glad we could be there for Alice; she really enjoyed having the lesson as she had her family with her.

After an hour it was time for the kids to say good-bye and let Alice rest.  Tyler left with the gang; I pulled up my sleeves and disinfected the room as I normally do when the kids leave.  She bathed and then rested on my lap for the next two hours while I stroked her hair and sang songs and read books to her.  I could do that all day.

Grandmother and Amberly came to visit.  Initially she was too weak to interact.  She later gathered some strength and emptied her stomach into the pink bucket—then she was ready for play.  She really enjoyed their visit. 

Alice received Methotrexate today at 8:00 p.m.   I really don’t like this drug.  It’s hard on the tummy and makes Alice feel so terrible.  The next couple days following this chemo are rough.  I thought it was her last dose of chemo ever…but I forgot we have one more day on day +6.  We can do it, we can do it!  We will find a way to celebrate on day +6….of course with some Zofran and Morphine.   Almost there little Alice! 

Alice requires oxygen at night…since transplant day, mostly.  She officially stopped eating on transplant day as well (ironically the last thing she ate was a blueberry muffin—and I didn’t take one bite of it, until she was done of course).  She drinks water with ice currently, but it all comes back up after a few minutes...still she likes the feel of the cold water down her throat. 

She rarely complains…just cuddles.




Saturday, October 19, 2013

Windows, Day +2

I remember now how frequently the windows of Alice come to a close when she is a couple days removed from her new marrow transfusion. This morning started well with her waking up and asking to watch a movie or solve a puzzle. Her pleasantness was soon replaced with a session of being sick and laying down. She needed a platelet transfusion today. She was able to take a long nap. The nap was good for except that it came with a trade off. While her body was getting the rest it needed, all the bacteria in her mouth was punching in and looking for overtime. They got it, she slept for four hours. By the time Alice woke up, she was complaining that her throat hurt when she swallowed and her mouth was tender. Upon further inspection the roof of her mouth was showing a dull whiteness that was all too familiar. The headaches came on suddenly and before I knew it, we were ordering Oxycodone and morphine to kill the pain. She rolled around the bed in pain not knowing what to do other than cry. I felt awful, but did my best to make her feel comfortable. I rubbed her head and feet. By the time the morphine had been administered she was in more pain than I had seen in some time. It took ten minutes for the medicine to help her fall asleep. Her oxygen stats are low enough now that when she sleeps a nasal cannula is required to help her breath.


Friday, October 18, 2013

Day +1

I made it up to the hospital before noon today to find Alice resting beside Lisy. She looked exhausted, and nodded when I asked if she felt sick. She perked up after a few minutes though and showed her old self by laughing and explaining the activities she and Lisy had done prior to my arrival. She is such a good actor that I wondered if she was just muscling through her aches and pains or if she actually felt good. Its seems that she can play for 15-20 minutes until she needs to take a rest because she feels "icky."  Her counts were low enough today to require blood. Still no signs of the mouth sores, yet. I'm happy about that. I can remember both Natalie and Alice on their first "tour of duty" with the mouth sores and their morphine drip....horrible.

They tend to show up a few days after transplant.  After every meal we scrub her mouth out with a mouthwash.

Alice did a Winnie the Poo puzzle today by herself, (50 pieces). I was impressed. In my youth I was never a huge puzzle fan. It was my patience or the lack thereof that prevented me having the motivation to tackle a 1000 piece jigsaw. I was too busy trying do the important things like utilizing the Nintendo to improve my memory skills, i.e. getting thirty lives on Nintendo's "Contra." (Up, Down, Up, Down, Left, Right, Left, Right, A, B, A, B, Start). Ohhhhh...I still got it, and at the same time, I digress.  Even better, Lisy corrected me on the A, B, part.  I had only one set.  Apparently we were both doing important things.


 Bundled up after a bath
Washing the Thiotepa off with new rubber duckies


Thursday, October 17, 2013

Transplant for the Pickle Monster, Day 0

Our nurse Britt and the stem cell scientist Justin

Hanging the Stem Cells....ready to be infused.

More Picture from Transplant Day!


Happy BMT Birthday Alice! 

What a day!  Once again Alice's room filled with family, doctors and nurses to celebrate a new birthday for Alice.  She now will have three birthdays in one year.  Her first August 8th, her second January 17th, and her third October 17th.  Just so happened that both her transplant birthdays are on the 17th.  The engraftment guessing calender is posted on the door.  Natalie made her guess for November 9th which is also her birthday.  I hope she is right.  That would be day plus 23....not bad. 

Our hope and prayer is that Alice will engraft much sooner than her last at day 39.  Again the average day for engraftment with this type of harvest is 21 days.

The facts of the day:

--Alice's transplant completed within 4 hours.

--We learned that yesterday enough stem cells were harvested by Alice's donor that two complete seperate units will be frozen and stored if ever Alice needs them in the future.  The stem cell lab scientist Justin worked from 7 am until 4 pm preparing the stem cells.

--Alice's donor is Male, 37 years old, blood type A+, and weighs 185 pounds.  Alice's blood type is 0+, we'll see if she switches over to A+.  A successful transplant doesn't necessarily mean the blood type will change.

--Her vitals were stable until the very end; as the infusion of stem cells were finishing she spiked a temperature and her blood pressure increased.  Both can be normal during stem cell infusion.  She is feeling better now.

--Tyler, Natalie, Matthew, Blair and Evie were all here to celebrate; and through facetime and Skype Grandma and Grandpa Schellenberg (in Spain), and Grandmother Fish (in Ohio) participated.

--Britt was our nurse.  Britt did an awesome job trouble shooting the infusion.  There was a blockage in the tubing that required an expert hand.

--Alice's favorite part of today was the party.

--We learned today that Alice's CMV has reactivated.  She is now receiving Foscanet three times a day to control CMV.

--All but two of Alice's oral meds have switched to IV....(this actually switched two days ago)

--Alice's diet has transferred to chicken broth and pickles by her request.  Nothing else sounds good to her.  The pickles are strong enough that the chemo hasn't altered their taste.  Just before bed she said, "Um Mom I need something...I need six pickles".  This is mostly what she has eaten today.
Alice wanted me to call her the Pickle Monster.

Pictures and Video to come tomorrow.