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.

Tuesday, January 31, 2012

Day 14-- Alice, Day 41--Natalie

Alice was restless last night, and called for me throughout the night. She has vomited a lot today. She continues to spit up blood, she received platelets again today. Her potassium and magnesium levels are low, she will be supplemented. Her blood pressure is high, she will begin talking BP medicine. The anti rejection medicine makes the blood pressure go up.

Good news, yesterday she showed traces of white cells, and today they doubled. This is great news, she should begin to start the healing process by the end of this week. Hopefully, beginning next week she may engraft. I was so glad and content to be with her.

I changed her dressing today, when I finished she looked up and said, "thank you Mom", I just love that little one. She wanted to take her own vitals, so the nurse let her put the thermometer under her arm. She waited for it to beep then tried to read if she knew how. It was so cute. She is so shaky and could hardly hold it still so we could see what it said before it cleared. When she stands to bowl, her little legs clatter together. I know she is very weak, but the medications also make her shake.

Because her platelets are low she busies easily in the strangest places. Also she has little red dots all over her skin called petechiae. Natalie had this as well due to low platelets.

When it was time for me to return home she had both her Grandpa's there with her. She seemed quite happy. She had two Grandpa's according to Alice.

Natalie is still doing well. She had vomited some and felt sick most of the day, but that didn't get in the way of playing. Her appetite is still returning.

After I came home Tyler said to me, "I know why I do the hospital shifts--It's a lot easier than being home." It's true...there are no nurses at home, no cafeteria to order meals from, no cleaning ladies to clean the room and wash the linens. I looked at him and said, "it could have been busier had I left Evie." He smiled and said, "I'm glad you didn't."

I think he did a fine job at home and when he is at the hospital I know all is well there.


Monday, January 30, 2012

Day 13 for Alice

The picture above is Alice not willing to part with Grandmother's iPad, she is asleep, but when Grandpa tried to slip it away she protested.

Busy day, Natalie had a clinic appointment. Her labs were awesome. She has managed to maintain good counts. Some of her medications were adjusted a little. She isn't scheduled to come back for a week. That was great news for her. She was a bit happier about coming to the hospital today. She really enjoyed seeing Alice.
Little Alice had another hard day. She received blood today, which seemed to bother her a little more than normal. With each transfusion brings different responses--it's interesting.
The waiting phase for her body to engraft and produce it's own cells is challenging. She is miserable.
After taking Natalie to the clinic, we came to Alice's room again. She patted the bed next to her for me to sit. I knew I wasn't going home, nor did I want to. I had previously arranged for my Aunt who lives near by to keep Evie for the night so I could spend some time with Alice. I guided Tyler by way of Skype as he did all Natalie's meds and infusions at home, he has done it many times before and already knew what to do, he is awesome.
Every time I tried to leave the room to run laundry or use the restroom Alice would cry and ask me to come back and sit next to her on the bed. I decided to do nothing but sit with her, the nurses washed the laundry. She even pulled her feet from out of the blanket and pointed at them for me to rub them. She has grown to love foot rubs as well. She is quite swollen still, as she has retained a lot of fluid. She is taking a larger dose of medicine to help push the excess fluid through. Her breathing is still loud, but her oxygen levels are doing alright and her lungs sound good.
She is seven days from when Natalie engrafted. We hope she will be able to engraft as quickly as Natalie did. Between now and then she may experience engraftment syndrome, which can cause fevers. All we can do is count down the days...each day that goes by is one day closer to feeling better. The days are long sometimes. I'm certain even longer for Alice.
She did have a moment today in which she felt alright. During that window. The Sundwalls came to visit. Good timing! They sang to her and it was lovely and beautiful. Michelle sang our favorite song "Edelweiss". I know she enjoyed their visit because she wanted to be silly, that was a nice change of pace for the day.
Shortly afterward she crashed and needed her barf bucket again. I will have memories of Natalie and Alice hovering over these pink buckets for the rest of my life.
I have been wanting to get pictures of all the nurses so the girls might remember them. The nurses here are awesome. We really appreciate them. Natalie is sitting next to Emily, she has been our nurse many times, she is wonderful--as well as all our nurses.


Sunday, January 29, 2012

Day plus 12

The day got away from us. I spent time with the family while grandpa took care of Alice. It was fun to be home for a couple days and catch up with Natalie and the boys. We are quickly coming to terms with how difficult it is to keep up on Natalie's medication. She has a couple meds that require a pump to administer. One of them takes around 8 hours to finish, so she carries it in a backpack around the house. There are so many that I'm having trouble keeping them straight. I'm grateful for Lisy's attention to detail.

Alice is still having a rough go as she waits for her marrow to engraft. She sleeps most of the day, but will have periods of energy when the morphine has kicked in. I wanted to post a couple videos; one of when she is having a hard time, and the other( which was taken shortly after) when her pain killer had started to have effect. Just wanted to show how different she can feel when things are good and when they are not so good.

Saturday, January 28, 2012

Alice Day 11

Thank you again Everyone for another amazing blood drive. I get the chills just thinking about all the good that will come from the blood drives.

I love that I can call the hospital any time of the day or night and talk to the nurse caring for Alice. I can get all the information I want and need to know when I am not able to be there. I have called on a few occasions in the middle of the night because I couldn't sleep, usually I feel better and am able to sleep after checking in. Today Alice stayed awake for most of the day--hopefully she will have a good night. She received more platelets, and as of two days ago requires a nasal cannula to help keep her oxygen levels up. She moves around the bed so much that the blow by doesn't help much--plus it's so loud.

Last week she started having some respiratory issues so we began using a nebulizer. It has seemed to help. Beginning today she will receive less albuteral (nebulizer). I feel like her lungs will not receive complete relief until her own attacking antibodies have died off.

Alice is so funny, she is miserable but willing to do everything she is asked to; the mouth washes are so painful, but she opens her mouth for the nurses without hesitation. She even tells them thank you when they finish. This alone is a huge blessing for us. This whole experience would be more difficult if she weren't so helpful.

She has been retaining a lot of fluid, you can see in her pictures that she looks a bit puffy. She is now on some medicine that will help her body rid of the excess fluid.

As for home, things are moving along. Even though it is Saturday, we had the children do some school work. I must have made it sound really fun, because they were on my case all morning to do school. Finally, I managed to accomplish a bit of school. Recess was decided by Matthew. We pretended to be Rocky Balboa and the Russian while listening to "Eye of the Tiger". I told them not to punch very hard...Blair got me pretty good though. Thanks to Tyler, he has been teaching the boys how to box. I really don't like the idea.

I finally decided to unload the car from when Natalie came home...(a week later) oh well! We have been playing so much, there was no time to do much else. I wasn't too anxious to be productive anyway. Usually after hospital stays we just crash and accomplish little.

It reminds of the when Evie was due to be born, both Natalie and Alice were in the hospital. Natalie in the ICU and Alice in ICS. During hospital stays we are all mostly running on adrenaline. Going into the third week of hospital life and being 8 1/2 months pregnant was a challenge for both Tyler and I. Tyler trying to keep his business running, and me trying to NOT have a baby at a children's hospital was quite an act. Finally, on a Monday morning I went home to find some rest in my own bed. Not realizing just how exhausted I was, Natalie asked the nurse to call me, and all I remember was her saying, "Mom, when are you coming, I'm all alone." I wanted to cry, because I felt so helpless. I think I told her I would be there right away. Next thing I knew, Tyler was home from work and I could hardly move. Needless to say, Evie was born that very night. Once my body was able to rest she came. I hadn't been at the hospital for an hour before she was born.

Looking back at that experience, I've discovered some great blessings. One being that Natalie grew a lot. She seemed to have matured quite a bit during that stay. She became less afraid of the hospital. I think it was helpful for her to realize that she can do it. Just like anything, when presented with a challenge...we arise to the occasion.


Here are a few pictures Grandpa took of Alice.

On Monday, Natalie has another appointment. I had a little talk with her about being kind to the nurses and doctors even if she does not want to be there. They are our friends and have helped us so much. She agreed to be happier. We'll see come Monday. ;)

Friday, January 27, 2012

Bowling Balls, and Heads That Look Like Them

The night for Alice was long as her number counts dropped to zero. She has acquired a bit of congestion and combined with the sores in her throat she has a constant bleed throughout the night. She will awake when there is too much blood in her stomach, and vomit. Her little breathing muscles are working overtime to assist her chest as it rises and falls rapidly to draw oxygen. It looks so uncomfortable that as I watch; I sync my own breath so that I feel as if I can breath for her. She has a constant morphine drip that does help, we dislike the idea of our child needing morphine. The ugly side is when her body has to wean from taking it, but I am glad it can give her a window to escape through from the pain.

This morning Alice sounded better, but still needed more platelets and blood. She ran a fever last night, so far nothing has come of it. Her steroid has been tapered down again, which leaves her on a low dose. Soon she will be completely off steroids. It has been a long time in waiting. Today is day plus 10 for Alice.

She was in the mood to play a little when her morphine kicked in; she has come to love the plastic bowling set the hospital has to use. (You know, the colored pins and black bowling ball with the not so effective finger holes) Alice insists on using the those quality finger holes before she bowls. Its really cute.

Natalie had an appointment today and was able to drop by for a bit before we took her home. The picture shows how excited she was to be back at the hospital. Alice loved seeing her big sister though, and was able to take a picture with she and I. I am looking forward to spending time with my family until Sunday as Grandpa and Amberly have given us the night off.


Thursday, January 26, 2012

Alice's Bald Head

Here are a couple video clips of Alice's haircut. The buzzers are annoying, just mute it. No more itching and waking up with hair all over her mouth and pillow.


Alice's Hard Day and a Blood Drive

It was a hard day for Alice. Her breathing is noticeably different as her blood counts have fallen, and her little face has become swollen due to her mouth sores. It is a struggle to watch her as she tries to maintain a cheerful appearance. As we brushed her hair, it started to come out by the handful. I thought to myself, "I've seen this before, I can handle this." I am discovering, however that I am requiring more strength than I realized; to handle watching what we have known was coming. As the hair continues to fall so have my hopes that she would be one of the few that escape the mouth sores and hair loss. It is cute though, when she hands me every strand of hair she can to throw away.

She received Platelets again today. They have raised her threshold for a platelet infusion. Because the excess of bleeding from her mouth the doctors decided to error on the side of caution, therefore, she will most likely need platelets everyday.

Natalie was so glad to be home. She did however have a close call when she threw up everything she ate last night. Lisy grabbed a garbage can just in time to catch the goods. We all played a new card game the kids love..."Sleeping Queens" It was fun to play with Natalie, Matthew and Blair together. It had been some time since that has happened.


We are so grateful for the blood drive that will be happening this Saturday. I cannot express how grateful we are to all of you.

Wednesday, January 25, 2012

An Extra Post From Home

I have so much on my mind and in my heart lately. I don't really know how to express myself sometimes, but at least I will give it a shot. First of all, if I could--I would individually thank every person who has sacrificed in any way for our benefit. Which is many, and we are aware of you. I wish I could write, call, or email each one of you. I would write a letter expressing the gratitude we feel. Frequently I find myself praying before bed or throughout the day, expressing heartfelt gratitude for all of you who have helped. I hope that you would be blessed so much that you wouldn't know what to do with the many blessings...because there were too many. :)

The love, support and kindness shown to our family has made all the difference in the world. We know prayers are being answered!!

I have managed to organize all of Natalie's meds and home infusions with the nurse so I am feeling better about the critical things. It was initially overwhelming, and will always be time consuming. She is fairly cooperative to take them, thankfully. When I picked her meds up from the pharmacy before leaving the hospital I wondered if I should have taken the little red wagon with me, to retrieve them all. :)

I wanted to share some little things about the sweet and painful emotions I have felt over the past little bit.

The day Natalie came home was so special, boy...did she earn it! She is so HAPPY to be home. Now Natalie, Matthew and Blair have each other and that is all they need.
I felt thankful and excited for Natalie as we left the hospital, although, half of my heart was left behind. I felt strange leaving with Natalie. I kept telling Tyler I felt like I was forgetting something. Well I was, my 2 year old. She has been asking Tyler periodically to get Mom as she points across the hall. She still thinks I'm just across the way. It breaks my heart. She feels terrible and I just want to rock her day and night. I Skyped with her tonight and I could tell that she was emotional and homesick. What a beautiful day it will be when she can be home with the rest of us.

When Natalie went back to the clinic today she wasn't happy...she didn't want to smile at anyone. I know it's because she wanted to stay home and bask in the life here. She has been so content to be home. However, it was cute because she asked if we could look through the door of her empty hospital room. She must have felt some appreciation for it, because she smiled when she looked in.

I can't lie, it has been hard for our family to be in different places.
I think we are all quite wimpy because we don't do well scattered. Just to explain, the boys have a room and the girls have a room...not sure why we need more than one room in the house, they end up in the same bed like sardines every night. By morning all the children are in my bed.

Tyler said to me recently that it will be a sad day when the kids stop coming to our bed in the morning. It's our time to lay next to them and talk about anything and everything.

Somehow Blair manages to end every conversation with a discussion on viruses. When he doesn't feel like eating or something doesn't look good to him, he will tell me, "I just have a virus coming up in my body so I can't."

Yesterday Natalie told me she hopes her hair doesn't grow back. I asked her why she didn't want hair anymore. She said, "because I look better without it" thank you to everyone who have complimented her and gave her such confidence. She feels so beautiful--and she is!

I can't say enough about how good it feels to be with my children. I get nothing done all day...and I'm totally fine with it. I have had more fun playing silly games (mostly made up), and have been completely engrossed in the most intriguing conversations, than I could imagine.

Natalie's agenda is to PLAY and PLAY. We played hide n' seek tonight and the rule was you could only hide in the basement. I must have looked for Blair for 20 minutes. I started to get nervous. When I had passed the kids bathroom I noticed the toilet paper roll was empty so I decided to fill it while I was there, I opened the cupboard below the sink to get a new roll and there was Blair grinning from ear to ear.

As fun as it is to play games all day, reality awaits us...just wait, as soon as I begin assigning jobs and beginning school work, the meltdowns will happen--it will become a challenge to incorporate some structure again, but will be much needed and appreciated by all.

I've decided while in quarantine to take advantage of each moment with my children and teach them at any opportunity that passes. When Matthew asks about how earthquakes happen, we have a lesson on geography. Natalie asked me if the planets are going to blow up some day. Not sure if I ever told her that one. Bliar's response is so simple..."I'm so strong I can stop the earthquakes."

Even in difficult times life still passes in a hurry, I wish there were a way I could stop the clock or slow it down. Time is a gift, but sometimes it's hard to hold on to.

Thanks again for everything,


Tuesday, January 24, 2012

Share The Love Event

We cannot thank you all enough for organizing this for our girls. Thank you so much for your kindness to our family. You're Invited to Share the Love for the Fish Family!
Feb. 25 - 6:00 PM Lone Peak High School Purchase your dinner tickets today:

More Platelets for Alice and day plus 7.

Monday, January 23, 2012

A good Day

Natalie awoke this morning to the doctor delivering news we have been so anxious to hear. "You are going home today." Her excitement was visible as she jumped onto my lap giving me a big hug. The rest of the day was filled with cleaning up her room. As I took down the posted get well emails and pictures, I couldn't help but feel gratitude to all of you who have helped our Natalie through this first stage of her recovery. She left the hospital with her ANC count at 1100 and feeling good. The doctors and nurses gathered together and sent her off with cheers. Now she begins her 100 days of quarantine.

Today Alice was showing the effects of chemo as she vomited much of the day. The doctors confirm that her mouth sores are starting to show in the back of her throat. She is however, still playful when she isn't holding the bucket to throw up. They will start her on more pain medicine tonight to help her sleep.

We get a emotional when we think of all those who have donated and will donate their blood on behalf of both our girls. Oh, how we are so thankful for your courage to do so. In addition, we on occasion will hear second hand how there are those of you who are selflessly working behind the scenes on our behalf. I wish there were words to express how thankful we are.

Post from Home by Lisy:
It was fun to come home to snow--beautiful! Natalie was excited to arrive. Some of the first things she did was look in the pantry and fridge. Earlier this week she said, "I just want to go home and make myself some toast." She drank three glasses of milk. Natalie thinks that everything tastes better at home. I guess I can't argue that when comparing it to hospital cafeteria food. Next she looked around the house with a little smirk on her face because she was so happy. She lied down in her bed, played sleeping queens with Matthew and Blair, and finally at midnight fell asleep. The three of them were so happy to be together that they played and played and I didn't have the heart to interupt them.
Intermountain Homecare had brought a delivery and Blair told the man that he better sanitize his hands before he comes in. There is a large bottle of sanitizer by the front door. Blair followed him with the bottle until he sanitized. Then when the nurse came he did the same thing. He said, "Everyone that comes to our house has to wash their hands." I thought that was so cute.
We will be busy administering plenty of meds around the clock for Natalie. However, with that said she has come home with fewer medicines than the average patient. She has done so well. The doctors have said many times that she is recovering wonderfully. They did say that she had one of the worst cases of mouth sores....we figured so ;)

Sunday, January 22, 2012

Alice day 5--Natalie day 32

Evie's Room...or the Shower.
Alice's Room

Our Pantry

Alice's Princess Dress Wall and Toys

A Nurse Posted Little Fish On Her Door

And Big Fish On Natalie's Door

Tyler Determined To Solve It

Natalie's Room
Just Chatting
Hanging Out In Natalie's Room

Natalie seemed bright and happy when we arrived back to the hospital today. She was so anxious to teach me a new game called Sleeping Queens--Aunt Karina taught her how to play. It is a fun game, she loves it.
Her ANC is 1200 today. She is doing super well. When talking to her Grandmother, she said, "I feel like something inside of me wants to go home."

Alice is still happy and gentle--becoming more uncomfortable. Today she had a low grade fever, however, because she is on steroids it is hard to say exactly what temperature her fever was. Steroids can mask a fever.

She is also having some difficulties breathing, which is troubling. She had an x-ray today to make sure her lungs were fine. The x-ray looked fine. I have seen this very thing with her before and I have my suspicions as to what is happening. Although it doesn't make much sense to the doctors (my idea) I still think it needs to be considered. I have learned over the years with our girls that nothing makes sense in a text book fashion. They are just different, and it's difficult to diagnose anything. Tomorrow should bring new information.

I took some pictures of the girls rooms, maybe Natalie will recognize it later. After all it's been a big part of their lives.

I have been trying to explain to Natalie that even though she is getting better and will be a healthier girl now, she may have 1 or 2 hospital stays during the first 100 days to a year post-transplant, if a fever occurs. Most kids after transplant have at least one hospital stay--ideally we don't want any, but I thought I would at least explain things to her.


Matthew's Messages

Our Mean Faces

A Good Attempt To A Mean Face

First of all, we need to thank all those who participated in the American Fork blood drive. Tyler's sister said they had a great turn out. Honestly, the blood drives are huge in helping the girls and such an amazing way of literally giving a part of yourself.It got me thinking about possibly how many blood donations Natalie and Alice have used in the past years. I figured Natalie alone has required blood units from hundreds of people over the last 6 1/2 years.
During this transplant process alone, they require a lot of blood. When someone donates their blood they are giving red cells, platelets and plasma--all of which are very necessary during transplant. For several months to follow both Natalie and Alice will continue to receive transfusions.
Some of the infusions will include good antibodies known as IVIG which will help greatly in keeping them healthy. This is a product of the plasma.

Many people have suggested essential oils. Thanks Emily for the oils. We are excited to implement them into the healing process for Natalie and Alice...and the rest of the family :). Once the girls are off certain medicines that can poorly interact with the oils they will be able to benefit from the good nature of the oils, so thank you..thank you.

Okay, because again this is our journal...we wanted to include Matthew for his bravery in being the sticky glue for all of us. That was the responsibility he was given before this all began. We knew he was a very important person, and we gave him this assignment because we know it is his nature. He has been calling us often and checking in with us.
He has provided so much fun and comfort to the girls. Alice asks to Skype to Matthew everyday...Natalie can overcome any anxieties when Matthew talks her through things. He has been so amazing. On the other hand, Matthew has been really tough and strong to be away from Mom and Dad. He loves his family and this has been equally as hard on him as anyone. If not at home with us, his next favorite place is right where he has been at Grandma and Grandpa Schellenberg's house. We are so thankful he and Blair have had a wonderful place to be.

The movie below is just audio...just some of the many sweet messages Matthew has left me, I couldn't get myself to erase them until I preserved them.

Again, thank you to everyone for all the amazing help.


Friday, January 20, 2012

Day 3 and Day 30

Natalie's ANC was 800...a little down from yesterday. She is feeling good. Most of her medicines are oral now. She is doing well enough with it. Today she organized her room and sorted through all her things. She loves each and every item. I have been slowly taking little things home here and there, and she has noticed every item that was missing. Natalie is on target for discharge on Monday/Tuesday. That will be 40 days for her total at the hospital.

Alice will be started on IV nutrition tonight, she is eating less and getting thinner. She still drinks bottles and plays without too much trouble. At this point Alice's body has tolerated everything better than Natalie did.

Tyler and I are happy to be with Matthew and Blair. They have been so understanding with all the transition that takes place. They have had some hard times though. We think Matthew has felt a bit lost in the shuffle, as he wasn't able to "give his bones to anyone". We gave him some other very important responsibilites to help keep everyone happy and positive.

Bliar has healed so well. At this point, there is only two distintictive dots on both sides of his hips to show evidence of his heroics.


Thursday, January 19, 2012

Alice Day 2, Natalie Day 29

Something we said wasn't so funny!

just another bad hospital hair day

all this just to change a diaper and check vitals

feeling good :)

A good day and a not so good day. Good news, Natalie kept her ANC to 1100. She received more platelets today. She ate two pieces of toast, some cheese, and yogurt. She talks about home all the time. This is a sign that she is feeling good. She may be able to go home next week if all goes well.
Once at home, she will still come to the clinic between 2-3 times a week for transfusions, lots of labs and close monitoring. These frequent clinical visits will last for 2-3 months. Then our visits will be a little less often.
Natalie saw a show on the discovery channel about whales. She has been crazy about it. I showed her some youtube videos of Shamu...she loved it.

A friend in another room named Sara made the girls some really cute masks. She glued some gems on their masks...maybe they will be more excited to wear them now. Sara rides around the hallways on her scooter--it's cute.

Alice is doing awesome. She plays and plays all day on her bed with whatever toy is there. She loves her blankets and movies. Tyler's cousin sent a new Backyardagains--Yipee! Her ANC is zero and she is eating less. We think her mouth is getting a bit tender, but no sores yet. Alice is so funny. She is starting to call the nurses by their names because she hears us do that.

Evie had a good day, she has been so sweet. She did decide to cry only when I had to change Natalie's dressing of course....which leads me to the bad news. Tyler had a bad day. :O He hit his wall today. I told him not to worry I would take care of the dressing change and sent him on his way to exercise. He needed a breath of fresh air. Alice was fine, Evie cried a bit, but we got it done and Natalie survived. I did it myself with help from the nurse.

Just as we finished Natalie's cousin Kennidee came to visit. Perfect timing, she needed a reason to smile after that. Once Tyler came back I hit my wall and needed some fresh air. I went outside and stood below Natalie's window. It was so refreshing, and maybe because it had just rained it reminded me of being on vacation for some reason. It was a lovely moment. I imagined I was in Hawaii, then I entered the hospital's revolving door and came back to reality in a hurry. :) However, ready to get back to business.

I thought I would surprise Tyler and make a really soft bed for him. A nurse found me a mattress and I made him the best bed ever. I then gave him a foot rub and told him that everything would be alright. He feel asleep, so I rubbed Alice's tiny her little feet are, then I came to Natalie's room to rub her feet. I thought to myself, I'm such a nice wife. Then I looked over at my bed and saw that Tyler had made my bed for me hours before. It made me smile and suddenly all the hard things about today seemed easier.

Tomorrow we will get to go home and see the boys.


Wednesday, January 18, 2012

More Fun for Natalie and Day plus 1 for Alice

Today went quickly. Neither of the girls needed blood or platelets or vomited, so it was a matter of keeping them comfortable while playing games with them. Natalie's ANC was 1100, and Alice received her dose of Methotrexate for which should reduce her chances of Graft vs. Host disease. Natalie is asking when she can come home now more often. She needs to eat more before that will happen; she is progressing a little more each day. For the most part, it was a good day for both girls.

The video of Natalie is from yesterday as she shot silly string at Matthew and Blair. You can tell she is too excited, misses them both and instead plasters the sink, you can also tell from her laugh that she doesn't care.


Natalie always has fun with her brothers, they do many silly things together. She usually provides all the clever ideas, and they love it.

Natalie got Grandpa Fish real good!!

Tuesday, January 17, 2012

Alice's Transplant

Today started out a little rough with Alice awaking in a sour mood. The nurse and I didn't help much by making her take her medicine first thing. She did her best to choke it down, but it ended in disaster as she threw it all back up accompanied with last night's milk bottle. Mmmmm Cottage Cheese, made the green way. Things got better afterward, Alice felt like a new person and fell back asleep until her new bone marrow arrived. All the doctors, nurses and techs on the floor came in and sang "Happy BMT Birthday" to her. It was also special because the doctors consented to allow Natalie out of her room to witness the transfusion. It was really fun. Matthew and Blair were there too, it was nice to be together as a family again.

The video tonight may be a little long, but there are some great moments where Alice notices Matthew in the door window and becomes excited to see him. There is also a moment when Natalie is assisted into the room which is really neat to me.

On the outside I was so happy; on the inside I struggled to not show my emotions as I thought about the new life Alice can have due to the kindness of someone we have never met; our unknown hero. Whoever this person may be, we hope that one day we can express our gratitude for saving our daughter's life. How we love you, and wish to know you.
Lisy and I feel such a releif to have both transplants (actual transplant) behind us. The worry of getting all the stars to line up between the donors and keeping everyone in top health has been weighing on us. PHEW!!!

Monday, January 16, 2012

Day -1 for Alice and Day 26 for Natalie

Platelets again for Natalie, her ANC is 800, and she had a really really good day. She had a lot of fun today. She did more pranks, but I'm too tired to upload the video--so it will be for another post. Honestly for the first time since we have been here Natalie has been more like herself. Not only is she talking up a storm and eating her food voluntarily, she is truly happy. She is talking about going home, which means she must be feeling better. I suspect if she continues at this rate, she may be able to go home as early as a week from now.

On several occasions the doctors have stated that they are very happy with both Natalie and Alice's response to this whole process. Once again, we tribute this to the many prayers being offered.

Alice finished her last pre-transplant chemo therapy today. She has done well and looks fabulous. She is still playing well enough. She received her first blood transfusion today. It bothered her a little, but was well enough. Tomorrow is transplant (day zero), a big day for her as we celebrate her "new life" birthday.

I have kept a prayer in my heart all day for Alice's donor. She donated today, and the marrow will be on a flight for Utah so Alice can receive it tomorrow . We are very thankful for her.

I think Tyler had the hardest day today. He's feeling a little cabin fever, so he went for a run outside to get some fresh air. He and I have been taking turns finding a bit of time to exercise. Sometimes just going outside for some fresh air is very therapeutic.

Evie had another wonderful field trip to my Uncle Dale and Aunt Michelle's house. My Aunt and Uncle have been able to take her for the daytime and then bring her back to me in the evening. She always comes back happier; Tyler and I feel so thankful for the extra help.

Tomorrow we will post lots of fun photos and videos. Stay tuned. :)

Love to all,


Sunday, January 15, 2012

Long Night

It was a long night as Both Alice and Natalie were feeling sick. Alice has been keen on skyping with Natalie across the way. It is comical to watch them converse; Natalie humors each call, but I can tell she looses interest in the conversation after the tenth "Hi Natalie."

Alice has an off day today for her chemo, which will be nice as she should have a good day because of it. I continue to have dreams that the Backyardigans are my neighbors and they constantly tell me I have no imagination. Don't believe a word they say, I have a great imagination.

More platelets today for Natalie, and her numbers rocketed to 1500 this morning. That is good news; bad news is she still feels horrible. Last night she cried and yelled in pain do due to the stomach craps. I held her as she shivered until the pain subsided and she fell asleep. It wasn't until the early hours of the morning Lisy and I were able have all three children sleeping, and we were finally able to negotiate some sleep of our own.


Back to the Hospital

Tyler and I came back around 7:00 pm to the hospital, after spending the night with Matthew and Blair. It was so good to see them. They enjoyed having us home as they have been a little homesick for mom and dad.

It was great to see that both Natalie and Alice had a good day for the most part. Today Natalie's ANC dropped to 500. Once again, this is normal when taken off the bone marrow medicine. She received more red blood cells today. It seemed to go well. Natalie had a difficult time later in the evening with her stomach again.

Alice just cooperates so well--she will even return Natalie's iPad to her when she asks for it back. After sometime of Natalie using her iPad, Alice began to ask for "Natalie's Pad Pad", I dialed Natalie's room number and gave Alice the phone. She asked Natalie if she could have her iPad, so Tyler delivered the iPad to Alice's room--I wish I would have recorded her reaction. She giggled and cheered to see the iPad, then she thanked Natalie on the phone and began to surf the iPad for her favorite apps.
That little piece of technology has been quite a blessing. The trick will be convincing Alice when we are home that a two year old does not in fact need an iPad.


Saturday, January 14, 2012

Day 23 for Natalie, Day -4 for Alice

It's getting hard to keep our days straight. Days become nights and nights become days in the hospital. If you asked me what day it was I'm not sure I would be able to tell you exactly.

Natlaie has been taken off the bone marrow stimulant medication, therefore, her ANC has dropped to 600. This is typical, however, if she drops below 500 they will give her another boost. This particular medication is administered with caution as it can stimulate cell growth which is exactly what cancer is...we don't want to create more trouble. She received platelets again today. She has a very small interest in eating, although, she ate two bites of noodles last night. She worked a little with the physical therapist today and another school educator.

Alice...just isn't Alice. It takes a lot to slow her down and take her steam. As of last night she hit her wall. She is spent, it's hard to see her this way. Yet, despite her discomfort she is still as sweet as ever; never forgets to thank the nurses and take her medicine. When she needs to throw up, she will say "Mom, by me" and pat the bed next to her. That means come help me mom.

Luckily her Busulfan (chemo) dose didn't increase nearly as much as Natalie's did. This will be to her liver's advantage. Today she received only one type of chemo, but tomorrow will be yucky again. Sunday is her rest day. Horray!

Alice slept and moaned most of the day, had her broviac dressing changed. She does quite well with the dressing changes. Grandpa came to stay with her and will spend the night. Tyler's sister is staying with Natalie. This has given Tyler and I the chance to go home and be with the boys for a day.

Matthew called me at 7:00 am before getting ready for school, he woke me to inform me that he had a plan. He told me that it would be really nice if I could be there to pick him up from school. He remembered that I mentioned I might be coming home to see him on Friday. He said, "I will be waiting by the flag pole and the big tree, please don't forget to come." Then he hurried to hang up the phone before I could change his mind.

It is hard being apart from each other. Soon enough the girls will be home, and during our required time of quarantine--we will have all the time in the world to be together.


Friday, January 13, 2012

A long Day

Today started well enough. Natalie slept for most of the day. Her ANC is 900, and in the early morning she received more platelets. She woke around 2pm and complained of the usual symptoms of nausea and aching all over. We do our best to console her, but it seems that we can not fulfill her need for comfort entirely. She is however distracted easily with books, crafts and emails we read to her.

As Lisy and I ping pong, back and forth from room to room we have started to realize how difficult this is going to be; that is doing our best to maintain the comfort of Natalie and Alice. Speaking of Alice, she received her dose of ATG anti-bodies today which made her spike a fever and vomited for the first time. So hard to see her outgoing personality be subdued by the chemo, it will be a long night.

Natalie pulled another prank, this time on me. It wasn't as successful as the others, but still funny. Thank you again for the comments of encouragement, we love reading them to the girls. They also boost us up as parents, thank you very very much.

Even being a long day, still there were some sweet moments and special memories made--with hopes renewed.


Wednesday, January 11, 2012

Natalie Continues to improve and Alice's treatment moves forward

Natalie's ANC count reached 1300 today. It is good to hear each morning from the doctors how pleased they are with her progress. They decided to take her off of the bone marrow booster medicine today since she seems to be producing enough on her own now. It was the doctor's thought that this particular medicine was the cause of her nausea and aches. We will know tomorrow if the retraction of the treatment has helped her feel better. If it does not help, further tests to see if she has contracted graft vs. host will need to be implicated.

Natalie did find some time today to pull more shenanigans with a whoopee cushion on a nurse. She gets the biggest kick out of jokes. She also painted turtles with magnets on them to give to those who come to visit her.

Alice seems to be having a ball playing with all the toys she can get her hands on. She also insists that the "Backyardigans" are to be played all the day long. The Backyardigans have worn me out. Tomorrow however she starts her ATG (rabbit anti-bodies) which brings on the nausea and achy symptoms.

Here is fun video of the two chatting over Skype. This activity happens several times a day between them.


Tuesday, January 10, 2012

Chemo for Alice and Pranks from Natalie

Natalie's levels are climbing. Her ANC is 900 today! More Platelets today. Many tummy aches and pain. She is on neupogen (bone marrow stimulant)which makes her very achy. Each day Natalie spends a half and hour with the PCMC school specialist. She enjoys the fun learning exercises they do together. Natalie has been planning some pranks for the nurses, so we thought we would post some. She loves jokes and anything silly.

Oh and by the way, we did have Natalie change her clothes and wash up after being on the floor. Natalie has had more vomiting today, and some stomach/intestinal trouble. This can sometimes be a sign of graft vs. host disease. We hope this isn't the case.

Lisy's Aunt Michelle came by and took Evie home with her for the day. It was nice to have a free hand today for both of us.

Alice has handled the busulfan (chemo) and fludaribine (chemo) decently at this point. She has been more fussy today and agitated for obvious reasons. Thursday will be a hard day for Alice. She will be given all three chemo drugs, and one being the ATG (rabbit antibody). ATG is our least favorite and most difficult. The nurse removed Alice's PICC line today. She has had a PICC line in her arm since June 3rd last year. It has just become a part of her. Now that it is gone, she might feel like she is missing a limb.


Monday, January 9, 2012

Welcome Alice (Day -8) Congrats Natalie day 19

Big day today, Natalie's ANC is 600. Dr. Pulsipher said that if she holds above 500 for tomorrow she will be engrafted; which means I'm the winner. Sorry Tyler, maybe you will have better luck guessing on Alice. I chose today because it's my Dad's Birthday! :)
Natalie had more fevers today. More blood cultures were drawn. We hope this trend will end soon. She is now on a very low morphine dose.

The other day when it had snowed, Natalie sat in the window admiring the beauty and said, "I wish I could build a snowman". It got me thinking, so I asked her to share with me something she would wish for if she could have any wish. She said, "I wish I could go to school straight away."

Alice came skipping in the unit bright and early today. She seemed excited to be here. Tyler and I looked at each other and thought to ourselves, oh poor Alice, if she only knew.

Alice's broviac placement went well enough, meaning it took some searching and prodding to get the right vein. She looks bruised and tender. While she was sedated they ran a hearing test on her. They found some small hearing loss, however, they also discovered that she has fluid behind her ears--this may be the reason for the slight hearing loss.

Tyler and I spent most of the day running back and forth between rooms. They are across the hall from each other and can see into each other's room through the windows. The nurse let Natalie leave the room for about a minute, she wasn't feeling great but did want to got to Alice's window. It took some coaxing, we only did so because we knew she wanted to go. She put on a mask and walked over to wave at Alice and welcome her.

My cousin Heidi gave me a cute army/camo style looking purse full of survival things. She said to use it in battle. I decided today that this battle just took front line. However, the hospital still has Alice's favorite movie "Backyardigans" so we are in business. That movie will be melted before she finishes her treatments.


An Extra Middle of The Night Post

Well it's only 2:00 a.m. and it feels like it should be morning already. I have been rubbing Natalie's feet since I put Evie to bed. She just isn't feeling well. She said, "Mom, when you sit by me and rub my feet it makes me feel like I'm not sick anymore." I have attempted to go to sleep many times, but she will call for me to return to her bedside. It reminds me of when I was younger. Things were always better when my mom was by my side; even if it was just to hold my hair back while throwing up.

Natalie had just slipped back to sleep so I laid down for a minute, but of course felt like I should make this post. After all this is my journal and I don't want to forget any details. Someday this will all be behind us and I hope to always remember the ups and downs in detail. Maybe this way I can never forget to help others that may find difficult times, as I will always have this journal to remind me of this time we have received great help.

I asked her before going to bed if she would like to listen to some music to help calm her. She asked for primary songs. I found a lovely CD someone had given us of primary songs in a lullaby version. I went to turn it off and she said, "Mom, just put it on repeat so I can listen to it all night."

We are surrounded by many tender mercies. Thank you everyone for your prayers. They are truly helping. I know Heavenly Father has even addressed the little details. I have never had a baby sleep so well at night like sweet Evie does.

I better run she is calling for me to rub her feet. :)


Sunday, January 8, 2012

Day 18-- False Engraftment!

Natalie had a rough night. She had a fever, some vomit and her ANC dipped to 400. Hopefully by tomorrow her numbers can come back up. The doctor said it is normal to dip a little. I was under the impression that with a sibling match it shouldn't dip. Until her ANC stays at 500 for two consecutive days she has not engrafted, which is what we originally thought.

Natalie has struggled today with what we think is withdrawal from the morphine. She was taken off the pump today, but showed withdrawal symptoms so is now back on a low dose and will continue to wean slowly.

Alice will be here bright and early. Oh, I just want to cry thinking about what she is about to begin. I have to take it all one day at a time and remember that when this is all over, we will be thankful we made it through and will have a much better prognosis. Alice is truly in need of transplant, for her little body has been even more aggressive at attacking itself than Natalie's.

For many years I would find ways to boost Natalie's immune system, not realizing that in her unique situation it was adding fuel to the fire. Alice's body is the same but for some reason she seemed to be more sick at a younger age.

Well anyway, now I'm just rambling--I am tired and need to go to sleep. Both Natalie and Evie are sleeping. I better do the same.

I'm glad that tomorrow I will have all three of my girls with me. I won't have to rush back and forth so much. I know Matthew and Blair are well at Grandma Schelleberg's. I will Skype with them each night so they know we are thinking of them. I miss them already.

Thanks everyone for your support. It is amazing how far words of encouragement can truly take someone (for Natalie and her parents). :)



Saturday, January 7, 2012


The nurse came in early and tapped me on the shoulder as I was sleeping and handed me Natalie's lab reports. I quickly scanned over each value, searching for of course her ANC value. It was there -- 500! She has officially engrafted--Hooray!
Because Natalie's donor was a sibling her neutrophil count will continue to rise and should not dip from 500. She has engrafted 5 days sooner than the average transplant using a sibling match donor. The winner of our engraftment bet was Tyler/Grandpa Fish.
Today was great. She spent most of the day laughing and enjoying herself. She watched the Smurfs and played games, and sketched blueberry ice cream cones.
Natalie's mouth is well enough to eat, however, due to the many medications food doesn't taste the same and her desire to eat is minuscule. She will most likely come home on TPN (IV nutrition) and other fluids. It will take some time before food begins to taste good again.
Aunt Amberly is spending the night with her tonight. Tyler and I are home with the boys and Alice. Tomorrow we will pack Matthew's and Blair's bags for Pleasant Grove. Early Monday morning Alice will join Natalie.
I have no idea how we will be able to reason with a 2 year old regarding oral meds with mouth sores. Hmmm.
One last thing, I was thinking much today about how many things could have gone wrong up to this point with Natalie and how little actually did go wrong. We know that many prayers have been heard in our behalf. We have seen the ugly side of medical disappointments many times and know how easy it can happen. We feel so blessed to have many faithful people praying for has made all the difference. Thank You!!

Friday, January 6, 2012

Day 16 -- Almost There

Natalie received red blood cells today and her ANC is between 200-300. This is big news. She is feeling significantly better. She did her mouth care with ease.
White blood cells are so interesting. It's like magic...the process of healing can happen so rapidly. There are many things the medical field has been able to synthetically reproduce--white blood cells are not one of them. They are so precious and vital. I wish I would have majored in biology and chemistry; I'm so fascinated by it all. Well anyway it has been so exciting watching the healing begin. I get all emotional when I think about how happy I am to see Natalie feeling better.

The Bone Marrow team provides a calendar for patients on their transplant birthday, in which anyone can place their bet as to when the patient will engraft. You make a guess and place a dollar in the envelope. The person who wins gets to present all the money to Natalie. Right now it looks like Grandpa Schellenberg might win, he chose Sunday. I will let you all know who the winner is. The doctor made sure that we knew it wasn't the hospital sponsoring the betting events. :)

Alice and Evie came in today. Alice's tests for Rhino Virus were positive. This will not postpone the process. She will be carefully watched. Rhino virus is the "common cold". She is on track for Monday.

Alice thinks the hospital is a fun and cool place. Each time I ask her about coming to the hospital she does a silly dance. I tried twice to get it on video--it was so funny, but I failed--so I posted the videos anyway. In one video she acts happy to come and the other she isn't sure.

Thanks to all for your love, support, prayers, and encouraging words. Even though we haven't replied or sent thank you's please know that we are aware of everything and feel so blessed by you all.


Silent Auction & Dinner

On behalf of Dave Anson:

Silent Auction and Dinner for Tyler Fish's Family !!! Hello to all friends and supporters of the Fish family. We are planning a silent auction and dinner to raise money for the foundation. The event will be held locally the second week of February (exact time and place will be sent out in an event from soon). This could be a HUGE event for the family and help out in incredible ways. I am sending this post to ask for the members of this group to give donations or ask friends, family and places of work for donations. In order for this event to be successful, we will need a variety of donations and need help from many people to make that happen. We are looking for many things for the auction in both goods and services. Some things that have been donated already are, for example, teeth whitening visits at a local dentist, a week in a condo on a country club in palm springs, a collection of scentsy candle products. Boutique items (quilts, crafts, etc.) are also great for silent auctions

As stated above, we are looking for a variety of items for the silent auction. We are also planning on parlaying this silent auction with a live auction for higher priced items. Packages that hopefully we can get and always seem to sell well:

1. Mountain bike or expensive outdoor rec equipment.
2. Travel & vacation packages (cruises for two, stay in a time share etc.)
3. Vespa scooter or some type of ATV.
4. Home theater projection/screen/etc.
5. Outdoor play set.
6. Private dinner in your home for eight people from a local restaurant.
7. Art or sculpture from a local artist.
8. ski equipment with season pass

Please, for this to go well we need participation from in collecting and giving donations. If you have an item or a special skill to donate, please donate. If you know people or a company that might be able to donate a good or service , please ask. Who is on board?

Wes Smith will be tracking donations and heading the donation portion of the auction. Please email or call him if you are on board to help. We need a count of who is willing to give or collect.

Cell number:(801)673-4982

Let's do what we can to help the family.

Thank you !

Thursday, January 5, 2012

Day 15--and feeling a bit better

Natalie's mouth looks better today. Her body has begun to produce a trace of white cells (level at .2), most likely monos which are precursors for ANC (Absolute Neutrophil Count) recovery. Engraftment is official when her ANC is 500 or above for two days in a row. Good news....engraftment is just around the bend.

She received more platelets today and will need red blood cells tomorrow. She had a small fever today, possibly due to a combustion of new cell production.

Thursday is dressing change day for her Broviac line. This is most definitely Natalie's least favorite thing. Unfortunately they had to change it twice today, she had been itching a bit under the tape and her finger got caught and pulled the tape up just enough that hey had to replace it.

She drank from a nutrition shake...she swallowed, that was big. She also ate a fruit snack. The sooner she eats the better. We are so happy!

I have to admit, the other day I was home and called Natalie's room to check on her. No one answered, so I tried Tyler's cell-no answer. I called the nurses desk--no answer. I waited for a while and tried again--no answer. Of course, I begin to get worried and start thinking of all things that could be happening. Finally, I get through and she is happy and talking...she was just busy I guess. What a relief!! I can't imagine what it might be like to live each day without that constant worry.

Tomorrow Alice and Evie will be having some labs done. Alice's will be slick because of her PICC line. Poor Evie, she is so chunky that it makes it difficult to find a vein.


Wednesday, January 4, 2012

Hello Everyone--Day 14

The doctors stepped in this morning for rounds and gave news that was a little concerning. Natalie's Cytomegalovirus (CMV) had increased over the night. Approximately 80% of the population has this virus in their bodies, however because of Natalie's compromised immune system, she will need a more aggressive regimen of anti-fungal medicine. They will be watching her more closely throughout the day. Another platelet transfusion will be needed today as she spit blood throughout the night.

This morning the morphine assisted in opening a small window of opportunity for me to get Natalie to speak a little. It took the strength she had left in her, but wanted to say hello to everyone.

Tuesday, January 3, 2012

Day 13

I read several emails out loud to Natalie today. She loves to listen to someone read to her, especially when the material is directed to her personally. I am so grateful for the remarks of encouragement for her, I know they play a healthy part in her attitude and recovery. Thank you for the emails.

Today was met with Natalie playing checkers and reading books between sessions of throat pain. Her blood levels required another platelet transfusion to reduce the bleeding. I noticed today that although the pain has not receded, it seems as though her threshold for it has increased. When she did her mouthwash, she screamed, but continued without stopping. So proud of her. Tomorrow is day plus 14; a day we have been looking forward to. Between day 14 and 20 are the days Natalie's body will possibly take hold of her new marrow from Blair.

We were notified by the doctors today, Alice will be admitted this coming Monday. Her donor is ready and has been scheduled. Alice had many labs today, a chest x-ray and nasal swabs. We are hoping Alice will get a room next door to Natalie. There will be one more day of blood draws, and come Monday she will embark on a journey her older sister knows all too well.

Monday, January 2, 2012

Day 12

Natalie had a better day today than normal. We have been staying on top of her morphine. She received more platelets. She played checkers (beat her dad three times), watched a new movie called Ramona and Beezus, which seems to be a bit more age appropriate than Harry Potter and the Deathly Hallows that she had seen earlier in the day. ;)

I came up in the afternoon so Tyler could go home for a night. When Natalie woke from her nap she sat up ever so quickly and gave me a giant hug. That made my day! I was equally as glad to see her. I feel much less anxiety and worry when I am with her, than when I am home. However, it doesn't matter where I am...I always feel I should be somewhere else. I think about the kids at home when I'm with Natalie and when I'm home I think constantly of Natalie. What a dilemma!

Natalie and I really had a fun evening. We read some fun books. Planned out our week of countdown to engraftment. We plan to have something to look forward to each day so the time will pass a bit faster. This evening we played a joke on one of the nurses. She wanted me to place a whoopee cushion on the chair where the nurse will sit and video the nurses reaction. Anything for a smile...right? Hmm..that might be a fun video post sometime. I'll admit I struggle with technology. I never have the cables, cards, chargers, and such that I need to make anything of it...thus the shortage of pictures or no pictures when I post.

Natalie told me that I am not a very good checkers player and that she would teach me how to play. I think that is a fabulous idea Natalie. The truth is--I really am trying.

Alice has developed a cold and cough over the past two days. Tyler will bring her in tomorrow to be examined. Hopefully nothing will come of it.

The nurse switched the chair in our room for a bigger and softer chair. I'm looking forward to a good nights rest.

Thanks to all,


Sunday, January 1, 2012

New Cut in a New Year

I walked into the hospital room this morning to see Natalie sitting up in her bed, hunched over and coughing up blood. The nurse said her sores had opened up from the violent coughs, and because her platelet counts were so low, her blood was not clotting fast enough. Although we were assured this was a normal activity for bone marrow patients, it was heartbreaking to witness. Each cough is agonizing to watch as she fights through the sharpness that holds her throat and mouth hostage.

Her hair came out by the handful this morning, so we decided it was time to cut it. She wasn't too keen on the idea, but warmed up to it mildly after I told her that I would go first. I had never shaved my head before, so this was a first and possibly not the last. I must say, I'm excited about waking up tomorrow morning not needing to worry about bedhead. Plus, I look like the rest of my brother-in-laws and nephews who are already reaping the benefits of being bald. Natalie was pleased enough when her own hair was finally gone. She says it feels better, although her scalp is tender to the touch. She looks beautiful.

The doctors are pleased with her progress, but caution us that she still has a long road to recovery. We are very proud of her, and although there are more frowns than smiles lately, she is showing her grit as she muscles through each jolt of pain.

Again, Lisy and I are so grateful for the love and help from all of you. One of our greatest desires of late is; having the ability to adequately express our love and appreciation for the burden taken off of our shoulders by all of you. We love you, and thank you from the warmest places of our hearts.


News Article in The Daily Herald