Fishes for Marrow Wishes

The Natalie & Alice Fish Story

2012-02-27T16:04:00.003-07:00

This was the video presented at the "Share The Love" event on Saturday night. This is the story of Natalie and Alice Fish

Day Plus 40

2012-02-26T23:00:00.002-07:00

Thank you again to all who were a part of last night's event. We have heard from so many about how wonderful and amazing it was. Words cannot express our gratitude. What a special day it was for us. THANK YOU!!

Tyler and I were trading places last night so we brought the other children in to visit with Alice for a moment. She laughed more in that short time than she has in a very long time. It was so cute to see her so happy to be with her brothers and sisters. She was sad to see them leave, but it was okay because Mom was staying.

Honestly, I am amazed at how many times Alice has smiled at me in the past two days. It's there, it's in her eyes...she is happy and I think she is feeling like things are beginning to wrap up. I feel like I can't hug her enough. I love being in her presence, it is a very peaceful and lovely feeling.

I know as time passes and our journey through this time comes to a close we will miss many things about it. Everything we use and look at have memories of someone or something that helped us through. For example, I will never be able to drink a Kerns nectar drink again without thinking of my sweet Aunt and Uncle who have faithfully kept our little food supply here at the hospital stocked. We will never forget the help and love that we have received. I know we have a long road still, but at least it will be filled with constant reminders of many who have shared their love with us.

Tyler and I felt like our buckets were empty when we started this journey last September, but they are overflowing now with strength and courage. Truly, it's hard to express how we feel through words.

Alice is doing good, more of her medications have been switched to oral. Her little stomach is trying to adjust. Sometimes it's too much, but she will get there. She has developed a skin rash, which is common and could be related to the cyclosporine she is receiving. There is a possibility it is a sign of graft vs. host disease. This would be the acute form and shouldn't be much of an issue. Hopefully if it is GVHD it will be temporary and should resolve. The fact that she received unrelated marrow, GVHD is a possibility.

Her blood pressure has been slightly elevated, so they increased her blood pressure medicine. This is also normal...just needs to be closely watched. And her ANC was 1700 today. Staying high!!! We are so happy!

ANC 1900 & Share The Love

2012-02-25T22:13:00.008-07:00

Alice's room seemed so lonely while she was in the PICU

Alice's numbers continue to increase. Her ANC was at 1900 this morning. The doctors have taken her off all major IV's and switched her to oral meds. This is a big step in the process to get her home. We have been told the goal is to do so possibly by mid week. Fingers crossed. She is still a little slow and melancholy, but has flashes of her old self. We are becoming more and more encouraged these past 24 hrs. I reflected today on how far she has come within the last 48 hrs. Our emotions have been all over the map, from the low side and to the very highest at the present. We are so grateful to the prayers offered on her behalf.

Lisy and I also wanted to thank everyone involved with the "Share the Love" event. We have gotten bits and pieces of info during the event and assume that it went well. We wish that we could have attended and greeted all of you ourselves. How we desire the ability to express our deep appreciation for the love shown to us. We know that there has been countless hours of labor from so many people. Tonight I would have to restrain from getting emotional each time I received a picture text of the happenings at the event. Someone shot me a text to tell me that Natalie's turtle art was bought, I melted inside. I replied to Natalie that she was officially an artist since someone had purchased a piece of her work. She didn't seem to comprehend it, as she shot back a puzzled look. I was a little emotional and thought I wouldn't get through explaining it without my voice cracking, so I said, "I'll explain it to you later." Thank you to you all for the labor of love on our children's behalf. We love you and wish that when you see us in the future, no matter what part of this event you were involved with, please tell us. For we wish to thank you personally from the warmest places in our hearts.

Tyler & Lisy

Returning from the PICU

Looking for Natalie accross the hall

Thank You--Alpine Blood Drive!

2012-02-25T17:46:00.004-07:00

I had spoke with Jessica my sister-in-law the other day, she was telling me about the Alpine blood drive. We feel so blessed and loved by many. If only we could thank everyone individually. The blood drive was a great success. Jessica said the only thing that could have been better was the fact that the Red Cross wasn't prepared for the amount of people that came. The coordinator from Red Cross told Jessica that they usually only plan on 30% of the people who sign up to show. Next time they better prepare for 100% :) This goes for all the blood drives that have been in Natalie and Alice's honor!

Thank You Everyone...many many lives will be blessed, including our sweet girls.

Love to all.

Lisy

GOOD NEWS--Engrafted!!

2012-02-24T14:14:00.016-07:00

Today is Day plus 38 for Alice, her ANC today was 1400. WOW and HOORAY!! This is a HUGE leap. She has officially engrafted. Her ANC of 600 yesterday must have been accurate.

We have waited so long for this day, and are thankful for the many prayers that have brought us to this point. Alice is more and more herself as time passes.

I felt it necessary to have Natalie and Matthew interact with her as she is healing from the brain trauma. She was very happy to see them. Natalie made her a darling card, showed her some home videos she had made on her iPad. She thought they were hilarious and so did Alice. Matthew is great medicine for anyone, especially Alice. She was asking for him earlier in the day.

It was hard for Alice to say good-bye when Natalie and Matthew had to leave.

Blair stayed home to keep Evie company, he was getting tired. However, I think he had a hidden agenda to rescure the Princess from King Bowser's castle.

Thanks again Everyone,

Lisy

A nice little bath to help with diaper rash, and Kathy the nurse.

It must be exhausting making more than double your white cells over night.

Back in ICS...feels like home!

2012-02-23T17:38:00.012-07:00

We have reached the end of the day and things have calmed down. What a whirlwind it has been. I can't remember if it should be day or night, sometimes this happens in the PICU. Alice's room in the PICU was between two rooms where Natalie was when she had Swine Flu and another time with Legionaries Disease. Being there naturally brought back some hard memories.

The EEG reported normal. The neurology team was pleased with the results, yet perplexed as to what happened. Between the PICU doctors, Bone Marrow doctors, and the Neurologists still remains a mystery as to what the initial cause was that led to Alice's seizures. The medications that are suspicious have been removed from her list. Her sugar levels are partially unexplained...as they have been watching them closely throughout the entire transplant process. Her glucose levels are stable now. She is not diabetic, nor does that mean she will be. It was just a random response to many factors at the time.

When Alice was being brought back to her original room she was aware of where she was. Upon arriving to her room she recognized Natalie's old room. She continued to say, "want Natalie's room" pointing in the direction across the hall. She repeated this six dozen times at least.

Alice's mental status is returning more each hour. This evening she was able to hold her head up by herself. She drank apple juice, and kept some of it down. Her eyes are still wondering but is able to focus enough to recognize and identify things. It's very comforting to see hourly progress.

We are thankful for the nurse Tabitha who handled the situation so well when Alice was coded. Tabitha was so responsive and acted quickly.

Alice received more blood today.

We are blessed to have so many people praying and fasting for her. She has made major improvements and we are certain that prayers are being answered.

When I came home from the hospital this evening, my house was clean, my laundry was done, my children were well cared for and a yummy dinner was delivered by my sweet neighbor. WOW! Thank you, Thank you!

Someone once said that two things can happen during hard times--they can make you or brake you. Because of so many others it would be impossible to allow the later to happen.

Before putting the children to bed I gathered them around me and explained that Alice is getting better. We sat and talked about Alice, about all the funny things she does. Each shared something they love about her. Within moments we were giggling and laughing. Oh, how we miss her at home.

I told them to remember all the blessings we have received in the past few days and during family prayer Matthew said, "Heavenly Father thanks for taking good care of Alice and thanks for everybody who fasts and prays for Alice." I know he really meant it. He told me about a movie he saw on The Friend website today. He said, "it made my tears come". I watched it and loved it. I feel like we are that little boy receiving such a beautiful red coat from all who know and even don't know us through your prayers.

Here is the address to this sweet story Matthew was telling me.

http://mormonchannel.org/the-coat

Natalie also reminded me of a story she watched in Primary one Sunday of two boys who helped a man in need. It's called "Silver Dollars in the Boots". It's easy to find through google or youtube.

Thank you!

Lisy

The EEG testing was a little tricky because she was so restless, it required two people to hold her still, while placing the leads.

This head bandage looks worse than it is. It's just to hold the leads in place during the testing. The test takes an hour or two so they make sure it's secure.

PICU update

2012-02-23T13:00:00.007-07:00

Alice has improved greatly over the past 32 hours. Her status has stabilized enough she may return to the ICS today.

The MRI came back normal, the CT scan was normal. We are so happy to hear that. She will have a EEG done soon. Alice has lost the strength to hold her head up, but the doctors feel that will improve over time.

She is communicating better, and now that the effects of the Ativan have worn off we can see a better picture of what her current status is.

Alice couldn't communicate normally after her seizure, but just a couple hours ago she said some things that made me feel so happy and relieved. She said, "Mom, scratch my back", "Mom, rub my feet", and "Mom bite my muffin!" Phew!!

The other day she ordered a muffin from the cafeteria. I tried to get her to eat it, she wouldn't and didn't want it so I just popped it into my mouth not even thinking much of it. She didn't like that--she told everyone for the next two days..."Mom bite my muffin!" You can imagine how I felt when she told the PICU nurse today that I bit her muffin, I was so glad to hear that she was coming back to herself and remembered something.

Alice vomited a lot recently, it soaked her favorite fishy blanket. She was hot when I tried to take it away to wash. She insisted on using it regardless it's condition.

A PICU doctor mentioned that she may have some delirium with all that is going on. We will take her to the window when we get back to our room and help her orientate herself again.

Yesterday her ANC was actually 400--big news, however, they don't know how accurate it was because of all that was going on with her body. Well today it was 600--even bigger news. We hope it is accurate.

Thanks to all who have been praying for her...she is doing MUCH better. I will post again tonight after the EEG comes back and we are back in our Valentine Wonderland room upstairs.

Emergency PICU

2012-02-22T13:39:00.012-07:00

Last night after Tyler and I put the kids to bed, I stayed up for a minute to make a post. It was a busy day yesterday, much to record. I finished my post just before Evie woke. She wanted to eat and be cuddled. I was enjoying every second with her. I love holding my babies when everyone else is asleep, because it is our time to be together without any interruption.

By 2:00 a.m. I was just laying Evie down when I heard Tyler's phone ring. At that moment my heart dropped. I knew something was wrong...the ring tone was Tyler's dad's who was with Alice. I wanted to wish the call away, but my heart was telling me another story. Tyler woke in an instant and ran to his phone. All I heard was Tyler telling his dad that he was on his way. Then Grandpa called back and said you better bring Lisy too. I burst into tears and scrambled to find my shoes and glasses. We must have drove 90 mph the entire way, we made it to the hospital in 30 minutes-what normally takes 45 minutes on a good day. Thanks Michael for coming to watch the kids.

Upon arriving we learned that at about 1:45 a.m. Alice was given a code blue. When a code blue is signaled all emergency personal from around the hospital rush to the room. The room filled with eighteen people within 45 seconds, according to Grandpa Fish. Alice was rushed to the Pediatric Intensive Care Unit. She was taken to CT scan and MRI.

What Happened?
Alice was lying in bed when her body began to seizure. Grandpa heard her wrestling around the bed and checked on her. He knew something was wrong; she was bleeding from her mouth.
He called for the nurse; she took one look at her and signaled the code blue. Tyler and I came straight to the PICU, upon arriving she was still having some seizures and was mentally gone. I can't really describe how she was, nor how I felt. I wanted to be angry, I wanted to cry, and I felt hopeless. I could hardly be in the room and see her this way. The intensity of the team caring for her in resolving the matter was what felt like to me an eternity of time.

Tyler and his dad gave her a priesthood blessing ad mist the chaos...it was comforting and calming for me as well as Alice. I am so thankful for that special powerful feeling that accompanies the priesthood.

The doctors are still sorting out what happened. The possibilities are PRES (Posterior Reversible Encephalopathy Syndrome) caused by high blood pressure, or Encephalitis (viral infection of the brain), and I can't think of the third one off the top of my head...we didn't sleep last night and I can hardly gather my thoughts.

Oh I think the third option was a side effect or reaction to a drug called Foscarnet. She has been receiving it for sometime now, but she was currently receiving this medication when the trouble began. The doctors said that this drug can cause such an event---10% chance of this reaction.

She was given high doses of Ativan to control the seizures, in which the Ativan has caused her to hallucinate tremendously. Ahhh....I just want to make it all go away. We have already done this before with Natalie and it's the scariest thing a parent has to go through. There is hope that it can be resolved, depending on what it is. We are paying that she will not have any damages or any long term affects of the seizures.

Also Alice was beginning to fill many diapers with a high volume of urine, I could tell she was very thirsty. I asked the nurse to look into the high urine output. They checked her sugar level and found that it was 1250. That is off the charts high. They ordered her some insulin immediately. It spiked most likely because of the different meds that she is on. It also began to come down on it's own, and now is manageable. She is not a diabetic, nor does this mean she has diabetes.

Alice received platelets today and IVIG.

Oh Sweet Alice...I find comfort in knowing how many
people are praying for her. Thank you everybody!!

Alice Day 35--Rituximab (More Chemo)

2012-02-21T23:38:00.003-07:00

Today Natalie had a clinic visit. She is very willing and happy to go these days because she really enjoys visiting Alice. It makes Alice's day when Natalie comes to see her. Natalie has maintained all her counts the same as last week. We are so proud of her cooperation with everything.

Alice's white count is 2000, and her ANC is 100. The doctors sent out for another Chimerism test. It will take a week to test. We hope her body's antibodies will be less.

Today was hard for us. We spoke with the doctors regarding the next step for Alice. They feel she needs Rituximab (another Chemotherapy idea). She still has traces (15%) of her old cells producing. This is what they think...in reality the doctors as well as us are in uncharted territory. Alice has been a very unique situation and has responded somewhat unexpectedly to the initial preparatory regimen.

She received her first dose of Rituxan today. This is a drug they have given her in the past--several months ago, however, it did not seem to make any difference. She has some very stubborn marrow in her. We hope this time around it will be different considering she has far less to destroy than out last attempt.

This drug should not affect the new marrow from her donor. Rituxan is specifically targeted to eliminate B cells, in which the new marrow will not produce for another six months anyway.
B cells produce antibodies (viral fighters) and T cells produce lymphocytes (bacteria/infection fighters). We can supplement Alice's body with Immune globulin (Ig) which is a sterilized solution obtained from pooled human blood plasma, which contains the immunoglobulins (or antibodies) to protect against disease. We cannot supplement her with lymphocytes.

Thank you to everyone for donating blood, because immune globulin is a product of the blood, in which Alice desperately needs...Natalie too, of course as well as the red cells and platelets. One single infusion of Ig is a combination of thousands of donors.

I wanted to stay with Alice all day, when I had to leave I could see herself trying to hold back her emotions...her little bottom lip was quivering, she wouldn't tell me good-bye. When I was past the doorway and away from the window I couldn't hold back the tears. I quickly gathered myself and said, "Press Forward". That is what we do. We can only take one day at a time, and sometimes that is almost too much. I Skyped with her once I got home and she seemed happier, I felt much better. What really breaks my heart is when she tries to reach through the computer to play with us. I remember Natalie saying once, "Matthew I just want to give you a hug."

On my way home I sorted out many pharmacy issues and home care deliveries...I feel like I'm refilling a med everyday. I sometimes think about taking a break or a nap, but then something is left undone.
I'm so thankful for all the help we receive, this would be impossible without much help.

Lisy

Day 34

2012-02-20T17:58:00.007-07:00

Last night was tough for Alice. She didn't sleep well due to vomiting, and she was showing rashes on her arms, cheeks and bottom. We had to change her diaper a dozen times because of the severe diarrhea. She is so uncomfortable at times that I wonder how in the world she hasn't broken down mentally. I do my best to keep her comfortable, sometimes I think I fail. This morning's news wasn't as good as we had hoped. Her white cells jumped to 1400, but her ANC dropped back to 0.

The doctors are becoming more concerned and have increased her steroid dose in hopes to suppress the lingering anti-bodies until the new marrow takes over. If this does not work within the next few days, the doctors would like to reintroduce a drug called Rutuximab. Alice has had experience with this drug before, but she did not have any success with it. Moreover, Lisy and I have reservations from using it again. The doctors are saying that this time would be different due to her having different marrow. We are still apprehensive of its use on her. I'm not sure that we have much choice.

Good news--the past couple days Alice has done well on room air, while awake. She requires oxygen (nasal cannula) still at night and periodically throughout the day.

Alice played for a good portion of the day. She bowled, and had a good time with some building blocks. She also got a package of Backyardigans, which she loves to play with. She keeps them in her bed and will not let me put them away. She requests more often now that I sit beside her in bed to play instead of sitting in the rocking chair beside her. When she beckons me with her little hand and then pats the vacant spot beside her, I can't deny the request.

Tomorrow will be a better day. Tyler

Day 33

2012-02-19T21:24:00.000-07:00

Quick post--I ran out of time, so I'm making it short.

Alice's numbers today were still the same as yesterday. 1300 white count--100 ANC. They are going to double the steroid. It will take a few days before we see any changes.

She is having a lot of abdominal pain and diarrhea. Hopefully she will engraft soon so the healing process can speed up.

Lisy

I Wish

2012-02-19T10:14:00.001-07:00

My last post has a video of Alice dancing to this song. It's so cute because she loves it. Thanks for the link Jill.

Improvement--Day 32 --Not Yet Engrafted--

2012-02-18T12:03:00.005-07:00

When the doctors rounded today they were glad to tell me that Alice's white count went from 900 to 1300. Her ANC (absolute neutrophil count) came up slightly, but still considered 100. Because her white count came up significantly maybe tomorrow we will see more nuetrophils.

She has felt overall better today. :) Today we have seen a significant change in the amount of times she vomits. I am so happy for her.

Yet, another long night,I was happy to be by her side. She wouldn't let me leave her bed...nor close my eyes. There was a little shut eye throughout the night. However, by 7:30 am she decided to be tired so I caught a nice little nap. At one point last night I asked the nurse to distract her enough so I could slip into my bed and get some sleep. The sweet nurse must have chatted with her for 45 minutes. I love the nurses here, they are the best.

Sometimes I fall asleep rocking her and there is nothing I can do about it. It reminds me of the feeling when you are trying so hard to stay awake but you just can't no matter how much you fight it, and when you fall asleep you think only a split second has passed but upon waking you realize how much time has gone by--usually it's me waking to a soggy diaper on my lap.

Several months ago when Natalie and Alice were in the hospital together, Tyler and I woke one morning to a hospital room covered in Alice's favorite color of marker PURPLE! She colored the entire room, even our socks and we had no idea. It had been a long night in the ICU with Natalie, and we were exhausted, apparently Alice was feeling well enough to doodle the marker dry. Fortunately many alcohol swabs later the room looked back to normal.

On one of the movies she likes to watch, there is a Care Bear preview and she loves to dance to the fun music. It's hard to hear the cute music on the video but it's a happy tune. The words are "I wish all my troubles away." Amen Alice!!

I actually talked Alice into wearing clothes, she was cold after a bath so I made a big deal about warming up in a nice pair of pants...a few moments after putting them on she wasn't so happy about her decision to wear them. I had to snag a picture of her face. A look of disappointment.

Lisy

Day 31 and still counting

2012-02-17T00:40:00.003-07:00

Alice is a trooper. She received red blood cells today. Her numbers are lingering still at 100ish. Her body really likes challenging the new marrow. Her antibodies are like steel and just need to find their exit. The steroids should help...that is the hope anyway. The question being raised is, "Can the steroids make enough difference on already existing antibodies, or is time the only medicine?" That question has been bounced around a handful of doctors...unfortunately there are a lot of unknown processes that occur in the body.

Tomorrow and the next day will be key for decision making. If there are no improvements in her counts then the steroid will be tapered immediately.

Good news, less vomiting in the past two days--still plenty, but less. Bad news, the diaper rash and pain inside her intestinal track is worsening. It will take several weeks to balance her bowels.

Alice still has no appetite, however, we order food and place it before her. Even one bite can help.

The Backyardigans have worn her out!

But don't worry they are still playing.

Just turn your head to see this picture. I wanted to remember the chaos of the IV pole. I forgot to rotate it in it's original format.

No Change in Counts

2012-02-16T20:22:00.006-07:00

I have a lot of information for this post, hopefully I can simplify it.

Day 30 for Alice, Day 57 for Natalie

First of all Natalie is doing awesome. When we came in to the clinic on Monday they checked all her blood levels and they were stable and rising. The other levels they checked were consistent to last week. Because her CMV was not going down they doubled her anti viral medication-this means she will have an added infusion into her line. I tried a day or two without any anti nausea medication, and she managed to get through the day with out throwing up--hooray, one less medication to intake. So far, we have eliminated two of them--only nine more to go.

Alice's ANC is still 100...no change. Last week the doctors sent out for a handful of tests. The infection/viral tests that have returned thankfully have been negative, more are pending. The main test that I was interested in has reported. This test is called Chimerism Testing/Engraftment Analysis. Basically what this means is...see below (rather than me explaining--I found a great description from the internet)

"A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue."--Seattle Cancer Care Alliance

As of today Alice's blood/marrow consists of somewhere between 70%-85% of the donor and the remaining amount still her own. We suspected this was the case, which partly explains the delay and difficulty it has been for her body to engraft. Her antibodies are aggressive and continue to attack the new cells being made. The understanding is that her body is not making more of her own antibodies (a good thing) but the antibodies that were already in her system pre chemo are lingering and fighting. This means that time is in our court. Those antibodies will eventually die off, but she needs to engraft in the meantime.

The plan is to give her a so called stress dose of steroid to suppress the antibodies attack mode so her white cells can convert into neutrophils. I wanted the doctors to take this route last week, now with the chimerism test results the consensus is steroids. Hopefully this will help her. The next few days will indicate.

The down side is that she will be on steroids for a few months--they need to be tapered over a period of time. Steroids have terrible side effects. We are extremely familiar with them.

Another risk in using steroids is the slight chance of loosing the graft. If the dosing is wrong it can cause her to loose the graft due to over suppression. The statistics for graft loss in this situation is about 10%. We feel confident that this will not happen.

Okay not so simply….that is as simplified as I can be. Trust me, I have much more information in my head, but I will stop here. Sometimes I wish I would have received a degree in something else…I am so fascinated with the microscopic things.

Lisy

Owies and Cheetos!!

2012-02-15T10:23:00.005-07:00

Alice has adopted the word "owie" a lot lately. She has developed diaper rash. When I change her diaper I avoid wipes and just give her a mini bath each time to wash with warm soapy water. Which has been about every 30 minutes today. She likes the bath. Then I let her air dry on my lap for a while...needless to say I have changed my clothes a couple times today because I didn't get her diaper on soon enough.

Like Alice now, I remember Natalie crying in pain each time she needed to use the potty. The mucositis affects the entire track throughout the body. This phase felt like it lasted forever with Natalie. I'm so sad for Alice.

She ate some cheetos today. That was good. They didn't stay down but at least she had an appetite. Of course they don't want anything healthy...Natalie's first food was Doritos.

Lisy

Back to 100

2012-02-14T22:48:00.005-07:00

Alice's ANC showed a count of 100 this morning and white blood cell count of 900. This is very good, we hope she will gain some momentum tomorrow. She slept until 2:30pm today, I left before she had woken up. My dad took over today so as to give me the afternoon off. Thank you everyone for the birthday wishes. Grandpa had tried to convince our children that I turned 50 today, but Matthew wasn't falling for it.

Natalie is doing well, she still has her aches and pains, but she is walking around the house on her tippy toes and wearing a smile.She continues to remind me that she does not want her hair to grow back. She's is so content on being home, we love it.

Grandpa said Alice played for a couple hours but was worn out soon after and fell asleep. The results from the tests that were taken yesterday should arrive in a couple days. We are anxious to see what the results will be as they are testing for a couple different viruses, one of them being for Epstein Barr. Its been a long day, will have a better post tomorrow.

Tyler

A Happy Day--Day 27

2012-02-13T23:26:00.010-07:00

Alice was happy today. She played and played with some new toys that were made just for her...miniature. Today Alice's room transformed into Valentines Day fun. Tyler said she really likes it. It's perfect for her and she needed a little something to brighten her spirits--thanks Judy and Alisha!

Still no ANC. The doctors are sending for some tests that may give us a better picture of what is happening inside her little body. It's possible that her old cells are being stubborn and fighting the new cells that are being produced. If this is the case her medications will be altered again, and hopefully none of this will require any more chemo or similar drugs.

Tyler and I are very anxious to hear the results from these tests and hope that her delay in engrafting is something we can resolve.

Physical therapy came and helped her for a moment. She sat on this cute yellow animal thing. It required strength from her legs to keep it in balance. I was very impressed with how well she did.

Natalie had an appointment in the clinic today. She is doing awesome. She has a bit of a cough, which could be asthma related. All Natalie's cell lines have continued to improve...it's amazing. She was excited to see Alice and watch a cartoon on her TV.

Tyler and I gave Alice a bath the other day and she loved it. She had her own little tea party in the water...she tried to drink her bath water but we caught it just in time. I quickly found some bottled water and cleaned her tea cup so she could drink. Later she begged to get back in, so we had a second bath shortly after.

One Step Backward

2012-02-12T20:14:00.005-07:00

Today Alice's ANC number dropped back to zero. It was a little disheartening to say the least, but we have hopes that it will return tomorrow. The doctors will be drawing for special blood tests to see what the hold up is on engraftment.

When she had some energy today she enjoyed skyping with the family. Last night Matthew asked to shave his head. I was up for it so we did, now he looks like Natalie. When Alice was skyping with him, she continued to mistake him for Natalie. It was pretty funny. He spent the morning trying to talk Blair into doing the same thing. Blair wasn't too keen on his proposal.

The video below is a little hard to watch. In the past Lisy and I have written about the occasional, but necessary dressing change both Natalie and Alice go through. I thought of describing tonight's experience, but instead made the decision to capture it and show how difficult it can be sometimes. Thankfully, this was more of a mild experience this evening. I am so impressed with Alice's willingness to do those things which repeatedly cause her pain. She cries, but continues to lie still until the procedure is finished.

Tyler

That purple balloon has been a source of comfort many times, as well as a good distraction. It must remain somewhere by her bed at all times, she will notice if it's moved.

Good News!

2012-02-11T16:17:00.004-07:00

Today Alice has an ANC...it's 100!! Hooray! We hope this trends moves ahead. She could possibly engraft by Tyler's birthday--Valentines!

Alice received blood today, it will give her more energy.

Last night was a good night for her and I. We spent the entire night next to each other in her bed talking and snuggling. I counted to her all the chicken pox scars on her little bald head. Well over 100...I actually stopped counting, because I got tired. We had a lot of fun though.

It was great to be with Alice for a couple days straight-I didn't want to leave today, but knew I needed to get home to the others. Evie was happy to see me...although, I think Tyler was the most happy. The one holding down the fort at home truly has the more difficult job.

When the doctors rounded today I had several questions for them. I had been concerned about a medication. By the end of our discussion we discovered that her dose was too high and needed to be adjusted. I felt better about being there to sort out some of those issues.

I'm excited to see what her numbers will be tomorrow.

Lisy

Day 24 Alice--Day 51 Natalie

2012-02-10T12:40:00.012-07:00

I'm sitting here next to Alice's bed watching her sleep. I keep an eye on her heart rate...as it reaches 175+ I will push her button for more morphine. Within 10 minutes her heart rate will slow a little as her body feels a titch of relief from the pain. Wow, this has been a struggle for her little body. She's hanging in there with all her might.

Alice's breathing/airways have suffered more than we had imagined. Natalie did very well considering the circumstances. Her determination may have played a big role in her recovery. She had a better understanding of what to expect than Alice has. Natalie also received sibling marrow.

Sweet Alice is just too little to understand what is happening. But she is a fighter, and she will press on.

Yesterday the lab called to confirm that Alice's CMV (cytomegalovirus or common cold virus) tests came back positive. She was positive for CMV prior to transplant, but apparently her levels are higher due to being immune suppressed.

Alice's white count is rising, however, no ANC. The considerations are that her body is being suppressed due to the virus and/or the white cells are being used to fight CMV and cannot mature into neutrophils enough to engraft. Therefore, the doctors added a new medication called Foscarnet which should slow the CMV and allow her body to engraft. Natalie required this same treatment. It is a common thing in transplant patients.

We will try not to be overly concerned at this point, unless of course we do not see improvement in the next few days.

Today Alice has wanted to drink lots and lots of water. That is great, however, she really hasn't kept any of it down. At least she is trying. Yesterday I ordered her some rice and toast. She ate some rice (maybe 20 grains) but it was something. She shared some with her friend Katie one grain at a time. Katie works here at the hospital and visits on occasion.

Physical therapy resulted in the therapist holding Alice in her lap because she was too tired and weak to play. She turned down the opportunity to bowl...soon enough she will be ready to knock the pins down again. Although, she will never turn down a foot rub. When she wants her feet rubbed she will pull them out from the blanket and point to them.

On the other hand, Natalie is home keeping everyone on their toes...we can hardly keep up with all the games and fun. :) She keeps busy, and loving every minute of it. Natalie walks around the house all day with a little smirk on her face because she is so happy to be home and feeling better.

Lisy

Day 23

2012-02-09T20:45:00.005-07:00

I woke this morning early in anticipation for when the doctors would make their rounds and find out if Alice's ANC would have improved. Before they came, I sat by her side and watched her. I could tell her lips were a little more swollen and she felt warm. I am weary of fevers as they can be a sign of infection, however they can be a sign of engraftment too. When the doctors came she was still asleep. Their report was that yet again her white cell count was up to 800 but still no ANC count. They explained to me that this is not out of the ordinary, however if she does not show signs of engraftment within the next few days, the plan would be to tweak her medication dosage. They informed me that on occasion the med dosage amount can suppress the engraftment process. They were confident in their delivery but I could tell it was also given with a bit of caution. I believe it was because when a patient is taken off too quickly from the high dosage of medications, their reaction to it will vary. I'm trying not to think about that until it needs to happen....one day at a time.

Lisy is there now, Alice needs her mother. As fathers, we can do many things, but there really isn't a substitute for the healing power of a mother's love.

Tyler

Happy or Sad?

2012-02-08T22:56:00.003-07:00

Alice's white counts were 700 today...ANC zero.

Tyler called me tonight and said that Alice really wants to see me. I was just serving the children dinner, so I quickly finished helping them, and rushed to the computer to Skype with her.

Upon calling her she seemed so down. She began to get emotional, I know she is homesick. I can't imagine what might be going through her mind. She must be wondering where her Mom is and why isn't she with me.

After seeing her, I told Tyler..."that's it--I'm going up there and I'm not coming home until she is with me." I know I will feel much better tomorrow when I can be there.

I didn't realize Tyler was filming us on Skype. It breaks my heart to see how emotional she is. She wanted to be happy but was so frustrated that she wasn't with us. We all tried to cheer her up--Matthew has a giant stuffed cat fish and he was pretending that it was eating my head, she laughed then cried. Actually, now that I think about it...I would cry too if a giant cat fish was eating my mom. (a two year old's perspective...should have thought that one through first)

I'm glad we are keeping a record/journal of all this. It's hard to record the sad things but I know it will make us all stronger in years to come. We are kind of journal crazy people. Well I guess I should speak for Tyler, he hasn't missed a day in his personal journal for several years--and I'm sure that he recorded the day he solved the Rubik's cube.

Lisy

Day 21--Alice

2012-02-07T22:19:00.005-07:00

Thank you to so many for another great blood drive (Highland). I wish I could call each person who has helped in any way and personally thank you.

The days are feeling so long. Alice is improving each day (we think), but it's ever so slight. She vomits most of the day and night. Her poor little legs are so weak. She does not want to stand because she is too weak. Natalie was forced to get out of bed and walk to the bathroom throughout the day and night. I really think that made a difference in her strength recovery. Physical therapy comes periodically to help Alice, however, the real problem is that she is too sick to do much. Soon this will be behind us and the memories will be more sweet than sad, largely because of the much love and support we have been enbraced by.

It feels so strange each night as we gather for prayer, to have Alice away. When the children pray they ask that Alice can come home soon. We miss her so much. Her favorite place is under the stairs...the play closet. Her little kitchen set and dollies are there. That light under the stairs has not been on for a while.

It's amazing to me how much a little person can shape your life in two short years. Since she was born she has been a little bit sunshine to everyone.

I clearly remember about 10 months ago when she was ill in the hospital...I was having a really hard time during this stay and felt very scared. One night I was home with the other children and I was so restless and emotional. I gathered the older three children and asked them to help me because I was sad. We decided to pray, as we knelt down together and prayed for Alice, I remember telling Heavenly Father that we need Alice in our family and pleaded that she might get better. I soon felt a peaceful feeling in my heart and knew that Alice holds a very special place in our family, an important role...and yes we need her. No wonder it seems so empty without her around.

Tomorrow will be another day closer :)

Lisy

Sleepy Day

2012-02-07T00:17:00.002-07:00

Alice woke this morning early. She wanted to play but could not overcome being sick every 15 min. Her white cells continue to increase as her body is working to adapt to her new marrow. She was overcome by exhaustion around noon and slept until 6pm. She had a window where she felt good enough to paint her nurse's nails. Afterward she became tired again and fell asleep. Her nurse said her sleepiness and low grade fever is a good sign that she may be engrafting soon.

2012-02-06T09:34:00.001-07:00

Alice has had a rough go of it this morning. She awoke around 7:30 and has been vomiting ever since. She is exhausted now and has fallen asleep. I hope that she will feel a little better when she wakes up. The doctors came in with news this morning that her white cell count is up to 500, but her ANC count is still 0. Should be any day now that the ANC will start to register a count in the upward direction.

Two nights ago I solved my first Rubik's cube. Took me a month; I know.... its pathetic, but I'm in a special club now. It's the " I'm 34 and had to use a youtube tutorial because I couldn't figure it out for myself club."

Tyler

Natalie up for a visit with her little sister.

Alice getting her weight checked:

Day 18--Another day closer

2012-02-04T15:05:00.006-07:00

I came to Alice's room bright and early today. I couldn't wait to get here. It was like I was a kid again and feeling that excitement of arriving at Disneyland. I haven't been able to be here since Monday/Tuesday. I was so happy to see her.

I sanitized the house and fed the baby, and prepared Natalie's meds before coming...I thought Tyler might appreciate a heads start for his adventurous day at home.

Alice's breathing is improving a little each day. Apparently the nurse practitioner informed me that this past Wednesday they were debating whether or not to send her to the ICU. They gave a type of emergency medicine (racemic epinephrine) through a nebulizer that cleared her airways just enough to keep her out of the ICU. Racemic epinephrine is practically the same thing that is given to someone with a very severe peanut allergy...in order to open their airways when having a severe reaction.

Alice's white cell count is 300 today...second day in a row, but her ANC is still zero.

Even with her counts slowing coming in--it will yet be a while before her airways improve. The mucocitis is a large part of the problem. However, there are other things going on as well. Some of her respiratory difficulty began before transplant.

Honestly the days can't pass fast enough for me. I am anxious to see her feeling better. It seems as though she will be a week behind Natalie's schedule of engrafting.

Almost all the pictures of Alice she is without clothes. I know she must be cold, due to the chemo and hair loss...although she refuses to wear clothes. I have tried all the tricks in the book to dress her. It would just make me feel better to see her warm and cozy. She never has liked wearing clothes. Who knows, maybe she is in fact hot. I would like to imagine that she is as comfortable as possible considering the circumstances.

At home, Natalie continues to stride forward. She has terrible joint pain and her feet hurt often. This is common after transplant. She is a trooper. The other day I played a made up game called "spy" with the kids. Natalie and Matthew were a team, and Blair and I were a team. The object was to sneak around the house touching three different strategically planned objects and returning to your home base without being seen.

It was quite hilarious as Matthew was so frustrated that Natalie couldn't keep up with him and continued to blow his cover. She was enjoying the game so much she didn't mind that they were caught often.

Natalie asked Tyler if she could always be bald. She doesn't want her hair to grow back. She loves the fact that she doesn't have to wash or brush it. Plus she says she looks better without it. :)

Lisy

Day 17--Alice

2012-02-03T21:42:00.006-07:00

Alice spent most of the day awake and talking. This is BIG. She must be feeling a little better. We hope she is turning the corner. Her white counts came up more today. We think she should engraft in the next few days. This is Wonderful. The physical therapist came to work with her today. She was too weak to bowl standing up. However, she must have bowled for an hour on the floor. Another infusion of platelets today.

Her breathing has improved some, still vomiting a lot. She gets to see Mom tomorrow!

Below is a follow up story KSL did on the girls.

http://www.ksl.com/?nid=148&sid=19112429&title=family-prepares-for-next-step-in-girls-recovery-from-rare-disease&s_cid=queue-2

Day 16

2012-02-02T21:55:00.008-07:00

Alice was able to sleep most of the day. Her breathing has not gotten worse, however it has not improved either. She woke up around 3pm with a little energy and requested...you guessed it; the Backyardigans. For an hour she and I conversed, and watched those animals sing and dance. She loves it, and that's all that matters.

Ed Yeates from KSL came to the hospital this past week to do a follow up story on the girls. He is really a wonderful person as it seemed to us that he has taken a great interest in the girls. I have been told but not confirmed that it will air tomorrow night at 5 and 10pm. Natalie was cute as they followed her around the hospital when she came back for a scheduled appointment. She did a good job as we knew she had no desire to be back at the hospital again. We were very proud of her. The camera crew then came over to Alice's room to take a few shots. It went well enough, we'll see how it turns out.

Alice and I skyped Lisy and the kids today. Its always fun to watch her initial reaction when she sees the kids or Lisy. She gets a sensory overload similar to when a child first walks into Disneyland. It is sad however, after a couple minutes have passed her demeanor calms down and she simply stares at the screen. Her look was discernible, she misses her mommy. It was a sobering moment. Below is a video of her not wanting to give up the Rubiks Cube

I am personally hoping that this weekend Alice will start to show signs of improvement. Last night there was a close call with her broviac line. A blood clot had blocked her line and for a couple hours it was looking like they might need to place an IV and possibly replace the line. My mind quickly recalled Natalie's ordeal with her replacement. I wasn't ready for another, but prepared myself for a long night. Thankfully, after much attention and work the nurses were able to unblock the line and dissolve the clot. There was a palatable tense feeling in the room for a while; but it was not to be, and all was well.

Tyler

I am I said

2012-02-01T18:37:00.007-07:00

In the early hours of the morning I awoke to Matthew and Blair in our bed. I know that perhaps one day I will miss it when our children are too old to come into our room and push me out of bed in the middle of the night. However that "day" was not last night. I quickly realized I wouldn't get any rest with Matthew's knee in my back, so I decided to head off to the couch; both Matthew and Blair looked too peaceful to disturb anyway. I slept well enough until the morning came and I was awoke by Blair dangling two Wii controls in my face requesting me to play with him. I had to decline his request as Lisy and I are trying to clamp down on the video game play. He's got "game fever," so we are doing our best to balance him out with reading and chores. Those games can be contagious; I had to catch myself the other night playing Lego Harry Potter. WOOOOOO, I could have spent all night exploring Hogwarts.

Anyhow, after Lisy had given all of Natalie's medication to her this morning, she went to run errands while I helped the children do their homework. I have so much respect now for those who choose to home school their children. It really does take a healthy amount of discipline to make it a success. I'm so grateful to Lisy, who has the fortitude to head up lessons for the children consistently. We have tried keeping to a schedule similar to school, so its' cute when the kids remind us when it is time for recess.

For recess today Matthew wanted to play the "orange game." It's simply throwing orange balls at each other as we run around the room. Natalie loves it. She is able to keep up for a short time until her joints start to hurt. I love to watch her smile and be happy, so good for her. The balls we use are soft, but carry enough weight that if you throw it hard enough it can deliver a sting. Today's highlight was Matthew beaming me with a fastball between my eyes. I dropped immediately; my eyes watering and seeing stars. After I gathered my senses, I decided it was early out day for school.

Alice is hanging in there. Her throat sores are constricting her breathing such that the respiratory team was called in to evaluate her. Her little body was working so hard to get oxygen to her lungs that they decided in addition to her blow by oxygen she would need a nasal tube, and an additional medication to open her airways. It seemed to work as her oxygen level rose. One of her lines is giving us problems, it isn't flushing. The nurse is working with it and will let it sit overnight with TPA. In the meantime they have to do her meds still, she will need an IV placed to accomplish this because the other line is constantly running. She isn't going to like having an IV placed.

She is very uncomfortable now, but we have hopes that upon the weekend she will show some signs of feeling better. She does not say much, and when she does you can hear the struggle from the back of her throat. We are so happy when she does communicate with us through pointing and waving.

On a different note, after spending so much time at the hospital it amazes me how much higher my threshold is with regards to fluids and odors. Case in point; today I cleaned the toilet on my knees with a Clorox wipe in one hand, and fudge pop in the other. I thought to myself, "this is pretty gross," but I'm good with it. Best fudge pop I ever ate.

Now on a lighter note. The other day I was driving to the hospital, and Neil Diamond was playing on the radio. When Neil started to tell me about where palm trees grow and how rents are low in L.A., he had already (as he always does) sold me on singing with him. With one hand on the wheel and the other playing the air tambourine, I began putting on a clinic at every Foothill Drive stoplight. I'm sure if it weren't for people adhering to the law, they would have passed on the clinic; but it didn't matter, I was making it happen. By the time I arrived at the hospital, I was charged and ready to go. If you too would like to put on a clinic, follow this link and make it happen:

http://youtu.be/mwircEDCss8

Thank you all for following Natalie and Alice's progress. We are so grateful for your encouragement and love for our children.

Tyler

Day 14-- Alice, Day 41--Natalie

2012-01-31T23:00:00.005-07:00

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 it....as 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.

Lisy

Day 13 for Alice

2012-01-30T22:43:00.007-07:00

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.

Lisy

Day plus 12

2012-01-29T22:50:00.002-07:00

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.

Alice Day 11

2012-01-28T20:02:00.004-07:00

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.

Lisy

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. ;)

Bowling Balls, and Heads That Look Like Them

2012-01-27T20:31:00.011-07:00

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.

Tyler

Alice's Bald Head

2012-01-26T22:38:00.003-07:00

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.

Tyler

Alice's Hard Day and a Blood Drive

2012-01-26T20:54:00.001-07:00

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.

Tyler

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.

An Extra Post From Home

2012-01-25T17:33:00.000-07:00

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"...so 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,

Lisy

Share The Love Event

2012-01-24T19:27:00.003-07:00

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: www.fisheswishes.com/events

More Platelets for Alice and day plus 7.

A good Day

2012-01-23T19:35:00.003-07:00

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.

Tyler

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 ;)

Alice day 5--Natalie day 32

2012-01-22T22:51:00.013-07:00

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.

Lisy

Matthew's Messages

2012-01-22T12:51:00.003-07:00

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.

Lisy

Day 3 and Day 30

2012-01-20T21:41:00.003-07:00

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.

Lisy

Alice Day 2, Natalie Day 29

2012-01-19T23:30:00.003-07:00

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 feet...so 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.

Lisy

More Fun for Natalie and Day plus 1 for Alice

2012-01-18T11:56:00.007-07:00

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.

Tyler

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!!

Alice's Transplant

2012-01-17T21:08:00.007-07:00

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!!!

Tyler

Day -1 for Alice and Day 26 for Natalie

2012-01-16T23:04:00.002-07:00

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,

Lisy

Long Night

2012-01-15T09:53:00.006-07:00

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.

Tyler

Back to the Hospital

2012-01-15T01:03:00.004-07:00

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.

Lisy

Day 23 for Natalie, Day -4 for Alice

2012-01-14T00:10:00.003-07:00

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.

Lisy

A long Day

2012-01-13T00:03:00.006-07:00

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.

Tyler

Natalie Continues to improve and Alice's treatment moves forward

2012-01-11T23:22:00.003-07:00

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.

Tyler

Chemo for Alice and Pranks from Natalie

2012-01-10T13:22:00.007-07:00

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.

Lisy

Welcome Alice (Day -8) Congrats Natalie day 19

2012-01-09T17:25:00.007-07:00

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.

Lisy

An Extra Middle of The Night Post

2012-01-09T01:51:00.005-07:00

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. :)

Lisy

Day 18-- False Engraftment!

2012-01-08T23:04:00.002-07:00

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). :)

Lisy

.

Day 17-- ENGRAFTMENT!!!

2012-01-07T20:42:00.006-07:00

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 us....it has made all the difference. Thank You!!

Lisy

Day 16 -- Almost There

2012-01-06T15:57:00.008-07:00

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.

Lisy

Silent Auction & Dinner

2012-01-06T11:11:00.004-07:00

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.

wgs.smith@gmail.com

Cell number:(801)673-4982

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

Thank you !

Day 15--and feeling a bit better

2012-01-05T23:00:00.003-07:00

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.

Lisy

Hello Everyone--Day 14

2012-01-04T11:54:00.010-07:00

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.

Tyler

Day 13

2012-01-03T22:54:00.003-07:00

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.

Tyler

Day 12

2012-01-02T23:35:00.003-07:00

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,

Lisy

New Cut in a New Year

2012-01-01T18:24:00.014-07:00

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.

Tyler

News Article in The Daily Herald

http://www.heraldextra.com/news/local/north/highland/highland-family-hopeful-treatments-will-save-daughters/article_72b3d7b8-77cb-501a-9554-dfb6b8092be7.html

Happy New Year!--Day 10

2011-12-31T22:27:00.012-07:00

Tomorrow is a new year, and we are wishing for a healthy 2012 and beyond!

Natalie and I celebrated by me giving her a two hour pedicure and foot rub. She loved every minute of it. I ate some left over chex mix from Christmas. She asked me to brush her hair while we watched the ball drop in New York City. By the time I was done brushing her hair the bed was covered. She has several bald spots, and by tomorrow much of her hair will be gone. I have always loved her hair, it's so beautiful and naturally styled itself. I keep thinking about what it will be like when it comes back in...I'm sure it will be just as pretty.

She did better today, the pain was managed with a higher dose of morphine. Despite the higher dose it still hurts to swallow and cough. We encourage her to cough so that it can help keep her lungs clear; although, she still chooses not to.

Dr. Pulsipher came by today and said that everything was following schedule. He did say that she had a considerably bad case of mouth sores, most likely from the significantly increased dose of Chemo (Busulfan) that she required. My concern at this point is the stability of her liver as time passes. The Busulfan and TPN (iv-nutrition) are very hard on the liver. The medication they administer to keep the liver clean and healthy can only be taken orally, which is so hard for her, and once its taken she often vomits. I wish there were an IV version.

Again, thanks for your words of encouragement. I read the email notes to her and the blog comments. When I finished she said, "Is there more?"

Below are some random pictures. Natalie with her brothers before coming to the hospital, and her and Alice together on their bed. The other picture is Natalie and Blair just before Natalie received Blair's marrow.

Lisy

A Visit From Matthew--Day 9

2011-12-30T23:44:00.003-07:00

Natalie has been so brave today. The pain is getting worse and she is more uncomfortable each day. She is trying so hard to be a good sport, which I think helps her endure. She has not required any transfusions today. I have to admit I was a bit nervous today because she had a fever of 102.7--which later I learned can be common by day 9. The fever broke on it's own, thankfully, we hope that it is just a routine thing. Her hair is beginning to fall out significantly, after a day or so of this, she will be more anxious to cut it. I think tomorrow will be a good day to have a spa party. Tyler will come up and we can shave his head as part of our spa party. She is so excited to see her dad with a bald head...I told her it won't be much different. :)

Natalie has a morphine pump now to control the pain. It hurts so bad to swallow and talk. She had some struggles today regarding this. She periodically vomits because of the stomach acid, then it hurts terribly against her mouth and throat sores. Moments ago I was playing checkers with her and she started to cry as she held her head and said, "no, no, no, please no, I don't want to throw up" trying to tell herself to make it go away. It takes a while for her to calm down and feel somewhat comfortable after such an event. I wish so bad I could make it all go away.

This afternoon Matthew was able to visit her...for the first and last time. Her face brightened right up to see him. They played checkers and she beat him...she is good (lots of practice). He did some dances for her and kept his mask on the entire time. She was getting so sleepy but wouldn't fall asleep because she was afraid that if she did, he wouldn't be there when she woke.

We read stories together and articles from the Friend. I gave her several foot rubs. Things are always better after a foot rub. I have Evie with me and considered sending her home, but she talked me into leaving her here. She had truly enjoyed her baby more today than ever. Natalie is so amazing!!! We are so proud of her.

Lisy

Natalie's Touch

2011-12-30T00:00:00.004-07:00

Hello Family and Friends,

I thought it would be appropriate to add a little of Natalie's touch to the blog. A sweet friend of mine helped me incorporate some of Natalie's art work; and created a lovely designer logo.

Natalie loves art, and she especially loves to draw turtles. Last time she was in the hospital the child life specialist gave her a little notebook just for her turtles. She spent the whole day making the cutest turtles, so we scanned them in and now she can see them on the blog as wallpaper. Not sure how I can add a bit of Alice yet. I would have to think of something loud and wild. Also, thank you for your sweet comments. We read to Natalie all the kind and encouraging things you say. She loves the support. Tyler and I are endlessly thankful for the amazing family and friends we have.

This is Day Plus 8- she has had 3 blood transfusions and 1 platelet transfusion.

Lisy

Warm Anti-bodies

2011-12-29T09:06:00.004-07:00

Yesterday Natalie had a wonderful visit from my parents. She does love it when they come up to read her stories and sing to her. As of yesterday, she has declined from speaking to often since her sores have become more sensitive and plentiful. Her throat is covered in cankers and although she has been so good to take all of her medicine, it has become incredibly painful for her to do so. She does not eat anymore, and will most likely be on a steady diet of morphine by the end of the day.

Last night around 8pm I noticed that in addition to her throat and roof of her mouth, her tongue had also become an off-white color. I knew the windows of patience to do mouthwashes had officially been closed, and it would take a healthy amount of coaxing to convince her to allow us to dump more peppermint flavored alcohol down her throat. Once she relented and the antiseptic was administered, the look on her face was memorable. With bloated cheeks, and eyes that spoke of courage and laced individual messages to the three of us in the room, she swished from one side to the other fighting the pain in her mouth with everything she could muster.

Her look translated to me as an angry yell for resolution, similar to that of the story Jerry Clower tells of raccoon hunting with "Knock'em out John." If you are not familiar with this story, below is the link, start at 2:37 and listen to the end. Well worth it.

http://www.youtube.com/watch?v=-AX9QoFhEhI&feature=related

On the doctor's round this morning they came with good news with regards to the effectiveness of Natalie's Chemo. They found she no longer has the "warm anti-bodies" floating around in her body. These warm anti-bodies were the culprits that would attach themselves to her red blood cells and leave a portion of the cell exposed. This process causes them to become singled out for destruction in the spleen as well as other portions of the reticuloendothelial system. (what a great word....re-tic-ulo-endo-the-lial) Thus, her red blood cells would be trapped in the spleen causing it to be enlarged. Natalie has had an enlarged spleen for most of her life due to the warm anti-bodies. To suppress it she has been on a heavy dose of steroids, and now that the chemo has won that battle, she in theory now will not need anymore help from medication to suppress those anti-bodies, simply because they do not exist in her body anymore. This is a great sign that the chemo is doing its job. In addition Natalie was itching her scalp this morning uncontrollably. As the doctor noticed this, he reached over and gave a slight tug on a few hairs; they came out easily. The hair loss has begun, and within 3-5 days it should be gone.

With regards to Alice, she has a tentative date to be admitted in two weeks. Her donor has checked into a hospital today somewhere, and will be going through some final blood tests.

Tyler

Mouth Sores

2011-12-28T08:43:00.007-07:00

Natalie's mouth sores presented themselves yesterday morning. She complained that her mouth would not open fully, so I did my best to examine it. Sure enough on both sides of the inside of her jaw were two white spots, looking raw and unwanted. Throughout the day she seemed able withstand the discomfort as Grandmother came to play with her. Into the evening things became worse as Natalie began to complain of soreness in her throat and mouth. I have been diligent in having her do an hourly mouthwash, but that too is becoming even more painful as the antiseptic might as well be salt on an open wound. Around 6am she could not sleep anymore as the pain was too uncomfortable to bare without medication.In addition to the medicine, I rubbed her feet until she fell asleep. Seems like rubbing ones feet has some sort of comfort property to it that works well in times of discomfort. At least it seems to be for Natalie. We will see what today brings as the sores should make their presence known even more in her mouth and throat.

I was sent this link this morning by a friend. It is about the bubble boy 40 years later. It really is amazing how far we have come since then regarding SCIDS

http://www.cbsnews.com/2300-204_162-10009228.html?tag=page

Tyler

Chemo

2011-12-27T11:26:00.007-07:00

Yesterday started slow as Natalie's blood counts had become low enough to require another blood transfusion. The low blood count reveals itself by paleness and low energy. She did not wake up until around 11am, which is very unusual for her. The doctors are still concerned for her lung and therefore are keeping a close eye on it as her condition can change in an instant. They have taken a chest x-ray this morning and will let us know later on today of any changes. She did complain this morning of her throat and mouth starting to hurt. Which means, it is the beginning of her mouth sores.

Below is a link to a short video I took of her while she slept. The quality doesn't show contrast of her skin pigment compared to mine as well as I would have liked. However you can see her complexion is pale and weak due to the effects of chemo.

Tyler

Merry Christmas

2011-12-25T21:02:00.006-07:00

It was surreal today waking up in the hospital on Christmas. Last night I had got up and wandered the empty halls of the hospital and thought about what it would be like the next morning. To my surprise the hospital was moving and shaking with more Christmas morning excitement than I had anticipated. Many of the nurses were shuffling in and out of the rooms delivering donated presents while tending to bedside needs. One of the nurses came in, stood by our window and asked me to come over to take a look. I did so, and what I saw was nothing unusual for a Christmas morning, just an empty parking lot. The nurse then said, " that's the ER parking lot, and come noon, it won't be empty anymore." He then said that today is one of the busiest times of the year for the ER due to gifts that give people the guts to do things they wouldn't do any other day in the year. Upon the twelve O clock hour, I peered out the window and sure enough it was full.

Natalie woke up with the usual nausea this morning. I really hoped that it would pass for a little while so that she could enjoy opening her presents. Luckily there was a window of normalcy for her as she opened the gifts given to her. It really was a good moment in time seeing the medical bed covered in torn wrapping paper and Natalie smiling in the middle of it all. Seeing your children happy really is something in, and of it self as being one of the true mediums of satisfaction for me as a parent, especially this year. Much of that happiness I feel is owed to all of you who helped us out with Christmas this year. We are incredibly grateful for the kindness and generosity on behalf of making our children comfortable and happy. We love you and wish that some day we can show the appropriate gratitude for your kindness.

Tyler

Day Plus 3 and Christmas Eve

2011-12-25T00:04:00.011-07:00

Merry Christmas Eve to all!

Natalie, Tyler, Evie and I are spending the night together. Evie is sleeping in the bathroom in her mini pack n' play. :) Natalie in her hospital bed, Tyler in the fold out chair bed, and I curled up in a ball at the bottom of Natalie's bed...hmm. We will see how long that lasts. Actually I do sleep quite well in small spaces, by morning all my children are in my bed lying every direction. I've learned to find sleep all sorts of funny ways over the years. Tyler, on the other hand already has plans to find an empty couch on the 2nd floor somewhere. We are pros when it comes to finding a place to sleep in this hospital. We know all the couches, chairs, sleep rooms, etc.
Truly it will be a memorable Christmas.

Tyler and Natalie have been reading all day and having a wonderful time. When I arrived they were watching the first Harry Potter movie. They just finished the first book.

The nurse has reminded Natalie that Santa comes to the hospital too. She was concerned that the hospital does not have a chimney...but they do have a helicopter landing pad just above our room. That sounds even better.

Today she has been nauseous again, she is receiving a medication called methotrexate, for clean up of any lasting T cells or B cells. It is a chemo, which will also help prevent graft vs. host disease. She finished the main chemo therapy, but this is an extra medication for post transplant to ensure that her body won't reject the new marrow.

I find it a bit troubling when the nurses are required to wear special thick purple gloves when administering the chemo chemicals, in the event that any of it touches their skin, yet it goes through a direct line by the ounces into my child's little body. It truly is one thing to imagine, yet another to actually watch. This was a hard realization to swallow, thus we are so thankful for the miracle of new marrow for her body, that can replenish all that has been taken.

Natalie was able to Skype to family again, and what a highlight this was. When Natalie saw the picture below she just giggled, it was fun for her to see so many bawled heads.

Natalie's Uncles and Cousins...and Matthew!

More Uncles and Cousins. :)

Wow, what a good looking bunch of guys!

Thank you to so many for making Natalie's life that much sweeter.
We have been blessed so much...Santa will be coming this year for our children. This sweet blessing was something Tyler and I were not able to accomplish without others.

Lisy

Day Plus 2 and David Archuleta

2011-12-23T20:12:00.010-07:00

I'm watching Natalie smile in her bed as she watches a Christmas special. She woke up an hour ago from a long nap. She needed to catch up on her rest as she was up all night with leg pain due to the lasting effects of chemo and all the marrow finding the way to its destination. Grandpa Fish stayed with her last night and therefore gave Lisy and I a night off to spend time with children at home. Blair is recovering. He shuffles around like a 85 year old man with scoliosis. It really is cute to watch. He's being pampered to the up most extent and loving every minute of it.

Today Natalie had a visit from David Archuleta. I wasn't there but got a picture sent to me from Grandpa's phone. He sang "Jingle Bells" to her, and although I have no doubt she hadn't a clue who he was, she enjoyed the visit and the personal serenade. Even though I arrived at the hospital long after he was gone, there was a quiet buzz still humming from several of the nurses about how fun it was to hear him sing.

I must say, whoever in the PR department made that happen; bravo to them. Now....if they could get Harry Potter, Ron Wesley & Hermione Granger to walk through the doors of the ICS, and have them conjure up a spell that would make Neil Diamond appear in a red sequined butterfly collard jumpsuit belting out Oh Holy Night; well....that would be nice too.

Tyler

Day Plus 1 and First Blood Transfusion

2011-12-23T10:58:00.001-07:00

This post is a day late, I started it yesterday, so don't be confused about the dates.

December 22
Today was day plus one, yesterday was transplant day zero. They say Natalie should engraft somewhere near day plus 21. The preparatory regimen chemo days were negative days counting down to transplant. We are so glad to be counting up now. :) Natalie had a good day. She was able to Skype home a bit. Natalie received her first blood transfusion today. She is at the point where they will become more frequent.

They just finished changing the broviac dressing. This is not a fun thing. Her skin is tender and a little raw under the tape. It hurts her to remove the tape, then they have to clean it with alcohol...which stings terribly. Normally this is only done once a week, but because of all the problems she has had with her old line it was being changed many times.

Blair is well, and feeling so proud of himself. He is receiving extra special care and enjoying every minute of it. He is very sore, able to walk (small steps), but it hurts to sit and bend. His throat is sore from the breathing tube during surgery. We are so proud of Blair.

I snuck over to Pleasant Grove while Josh waited in the car with Alice and Evie, so I could run in and give Matthew a hug. I have been missing him badly. He has been with cousins and uncles, and didn't seem to miss me as much as I was missing him. He was playing on his cousin's Wii, no wonder he wasn't homesick.

Lisy

Marrow For Natalie

2011-12-21T22:05:00.017-07:00

This morning for Natalie started out where the doctors had left off last night. After repairing the broviac line for the fourth time unsuccessfully they decided to remove the existing line and replace it with a new one. Which meant Natalie had to go back to the OR. Natalie had nothing good to say when she figured out what was going to happen. While she was getting her new line, Blair was donating his marrow. When I first saw him in the recovery room he had not woken up yet and looked very comfortable bundled up in warm blankets. As I looked at him, I couldn't resist the proud feeling of knowing that he willingly put himself in harms way to help his sister. You are a hero Blair, and we will throw you a hero's party when this is all over.

It was perfect timing; when we were wheeling Blair out of recovery we ran into Natalie and Lisy as they were taking her back to the room. We put Blair up on the same bed wheeled both together. As I watched them both on the bed, looking like they had both been through so much; fatigued and sore from the abrasive procedures. Natalie now has two holes in her chest and Blair having over 60 needle "pokes" between both hips. So proud of their willingness to make it happen.

At close to 5pm the whole floor of nurses and doctors gathered in her room to sing "Happy Bone Marrow Transplant Birthday" to Natalie, to a new life. I was so happy, this day has been over 6 years in the making. It really is a new day for Natalie, the beginning of the end of chronic illness and worry. When the nurse hung the bag of marrow I watched it flow ever so slowly down the tube and into Natalie's chest. She wasn't as excited as I was, but I didn't care. I felt very much like the lightness you feel after finals week is over. She has one more bag of marrow to receive tonight around 10pm and then it will be finished.

The next few weeks will be tough on her as her body's blood counts will drop due to the chemo and low energy will ensue. Her existing hair will be a thing of the past and replaced with mouth sores. The doctors will be monitoring her lung closely. No doubt it will be the toughest three weeks for her, but she's tough. It is after all, not her first day on the job.

Tyler

An Early Morning

2011-12-20T12:28:00.003-07:00

I was woke by the nurse this morning around 5am. I could hear some commotion but couldn't see until I got my glasses on. While doing so the nurse explained to me she had found a leak on Natalie's Broviac line and needed to be repaired immediately. I then notice two other people from the I.V. team getting prepped for what was to be a very long hour and a half. They asked me to assist in holding her legs down while another held Natalie's arms above her head. She had an incredibly rude awakening as the third person pealed her dressing off. Just below needles Natalie loathes getting her lines redressed the most. She exclaimed many times that she wanted her mother, and in doing so did it at a decibel that probably woke everyone on the floor. By the time it was over the IV personnel had redone her dressing twice and still were not confident the stint used was going to hold. We went forward however with the administering through the line. At 11am they started her last dose of Chemo. She has taken it well enough; however the we noticed yet again a leak coming from her line.……They just notified me that they will need to repair the line again. If it cannot be fixed they will have to replace the line in its entirety. They have prepped me that will most likely be a long night as the effect of the chemo will set in this evening.
Blair and Alice were up here today too as Blair gave more blood draws for tomorrow's big day, and Alice received her IVIG dose before her stay for chemo starts in a couple weeks.

Natalie's Rest Day

2011-12-20T00:26:00.000-07:00

I was not able to be with Natalie today, however, Tyler said it was well. This is her rest day from the chemo, tomorrow will be her last day of ATG and then Wednesday is transplant. We are happy to be just a day away from transplant. We know that the worst is still ahead as her body lingers until engraftment. Her risk of illness becomes greater with each day. Today Natalie was able to spend time with Grandmother Fish and the two kept busy enjoying the fun things Grandmother had prepared.
The other day when I was with Natalie, she was talking about missing her friends at school. Not but a few minutes later, emails were delivered to her room from friends and family. Thank you so much for your messages. She had me read them to her each at least three times. It meant a lot.
Tomorrow Blair will have one last blood lab before the big day on Wednesday to ensure that all is well. I know Blair will be okay, although, I wish I could donate in place of him. Tonight I gave him an extra long hug. He is the man of the house right now because Tyler is gone and Matthew is with Grandma Schellenberg. Blair decided that his new sleeping quarters are right next to me in my bed. He and I have been spending some quality time together. I received an entire education today regarding viruses. Allow me to share what I learned in Blair's own words, "Mom, there are a lot of viruses out there. Some are tree viruses and some are leg viruses. I once had a tummy virus, but my leg virus hurt more. The tree virus just takes down the tree. And a giant virus can kill a giant." -- My poor children and their intriguing relationship with viruses and bacteria’s/germs. Let's hope over time they won't be afraid of normal things in life. :)
Tomorrow Alice will also be going in for a routine treatment of IVIG (good antibodies) to hold her over until her transplant process begins.
Well now that it is already tomorrow...it's 18 minutes past midnight, I better get some sleep. More ahead this week, as much will be happening.
Love,
Lisy

A hard night

2011-12-19T05:55:00.005-07:00

Oh, how much Lisy and I have to be grateful for. So many miracles in our lives because of the love and compassion all of you continue to show us. Every night I record a daily record, and every night lately the ending sentence has been in so many words of, “how can we ever express the thanks and appropriate gratitude to you all that have lifted the burden in order to ease the discomforts of our daughters?” We love you, and thank you from the warmest spaces of our hearts.

I couldn't go back to sleep this morning. Natalie has had a hard night. She is exhausted and wants to sleep, however she is so uncomfortable her body won’t seem to allow her to rest. The vomiting is starting to become more routine. Around 4:30 this morning as I held her hair back through another episode, all I could do was offer encouragement. "Get it all out," I told her, "you will feel better when it’s all out." How would I know such a thing? After all my experience with nausea is only from viruses my stomach was attempting to usher out. Natalie doesn't have an unwanted bug, but instead; chemicals that are flowing throughout her blood stream, causing her body to react in the only way it knows how. That temporary relief we feel after an episode of nausea escapes her. I see her asleep now, but her face does not show the complexion of rest. Thankfully she will have an off day for chemo on Monday. Tuesday calls for one more dose of ATG and then transplant on Weds. Two weeks from then, should her body accept the new marrow; she will start to feel better.

A Cousin's Tribute

2011-12-18T20:00:00.000-07:00

My son heard that his cousins were going to lose their hair during chemotherapy and decided to shave his head to be like them.

Tribute Video

A Better Day

2011-12-17T22:56:00.006-07:00

Today was a good day for Natalie. Partly because it was an off day for her ATG Chemo. I took care of the kids until noon and headed up to relieve Lisy around 2 PM. Natalie and I colored and cut out Christmas decorations. I must say that I enjoyed coloring, its been since grade school I think that I picked up some colored pencils and put them to use on a coloring book. I am grateful that we have a room.

Tomorrow will be a hard day as she will resume all three Chemo treatments. I've been impressed with her positive attitude even when she is feeling aches and pains. I am sure she will be able to draw on this experience later in life. I am very proud to be her father.

Effects of chemo are setting in

2011-12-17T00:53:00.002-07:00

Natalie has been so brave today. She hasn't felt well, and spent most of the evening vomiting; however, has remained happy enough. She has complained that her whole body hurts. She has found distraction in her iPad, thank heaven for the iPad. She developed a fairly high fever in the early evening. We think it is from the drug ATG, which is a rabbit antibody. This is the most aggressive of the preparatory regimen. They will watch her closely. She had a small issue with a medication dosage...it was a little too much and caused her to be too sleepy and less able to keep her oxygen level up.

Natalie was able to Skype home to Matthew. She was so happy to see him, and said with a homesick voice "Matthew I just want to be able to hug you", so the two of them exchanged blowing kisses over Skype...it was cute.

I just looked at the clock and it's 1:00 a.m.--well past my bedtime. Days and nights here begin to blend, and surprisingly the time has gone by so quickly today. Tyler is home with Blair, Alice and Evie, it will be interesting to see who will have a more restful night. This is my first night away from my baby! I think I am going to have a harder time than her.

More tomorrow--

Lisy

Double Dose

2011-12-15T20:11:00.004-07:00

Today was met with as much anticipation as yesterday. I wondered how Natalie would feel this morning with a full day's worth of chemo. As I asked her how she felt, to my surprise she acknowledge that she felt no different than yesterday. It was a relief to me as I had a hard time falling asleep last night as I wondered when the effects of the medicine would take over during the night. It would be in the afternoon hours that I would learn the reason why she had not felt the effects of the medicine. From blood tests taken throughout the night the doctors found that Natalie's body is metabolizing the Busulfan far too quickly. Therefore they must increase her doze by 80%. As increasing the dose is not uncommon, this percentage of increase is large and must be watched closely. So, it will be another night of blood draws and vitals. I hope that she will be able to sleep well enough. Both Lisy and I trust the doctors working for Natalie and have agreed to go forward with their decision. Will write more tomorrow.

Tyler

KSL News Story & Video

2011-12-15T19:40:00.001-07:00

Unbelievable job done by KSL tonight on their story about Natalie, Blair & Alice.

KSL Website Story

Video of KSL News story

KUTV News Story & Video

2011-12-14T21:01:00.002-07:00

In case any of you missed it, here is the story that KUTV ran tonight on the 10 PM news on the girls and a link to their website article. Looks like they too have posted a rather small video, but mine should be easier to watch and is in HD (if you select HD). :-)

KUTV Website Story

Video of KUTV News story

The Beginning of the End

2011-12-14T20:12:00.006-07:00

My alarm sounded at 3:00 this morning, both anxious and nervous Natalie and I drove out at 4:00am to Primary Children's Hospital to begin her chemo and inevitable marrow transplant. We checked into the ICU at 5am and by 6am she had started on her first dose of chemo. As the doctors have consulted us on what will be a few different types of "chemo medicines" to properly "break down" her existing marrow, Natalie's first dose of slow poison comes by the name of BUSULFAN. Busulfan is a med that is typically used to destroy fast growing cells by interfering with the cells in the growth cycle. The side effects will be nausea and mouth sores. The mouth sores are what I fear the most for her as we all can relate to having a canker sore at some point in our lives. While going through chemo the mouth sores can be so prevalent that they reach beyond the mouth and appear in the throat and sometimes down to the stomach. To slow down the cankers Natalie will have a dose of certain meds and mouth rinse after every meal to prevent the bacteria from building.

Overall a good day as she did struggle with having to receive another IV. The IV was for dye to be place in her veins for a CAT scan. The doctors needed a full body x-ray to utilize as a resource for a before and after study during her chemo. They will be required to watch with a close eye her right lung as the chemo takes hold of her.

It is interesting to me how well she looks at the present, and with this small window of good health it becomes the opportune time to break her down in order to make her strong again.

On a lighter note, before it all began I sat and stared at the tube of Busulfan before the nurse reentered the room to hit the "go" button. Natalie had dozed off; and because it was still early in the morning, perhaps I was a bit tired because I thought for a moment what the initial conversation might be like between the Busulfan particles and Natalie's marrow? I immediately thought of a movie; I don't recall the title nor the exact verbiage, but I imagined that the Busulfan enters the room and announces to all the cells in the marrow, " Everyone, I have come to chew bubble gum and kick tail......and I'm all out of bubble gum." Alas...I digress.

With the first day come and almost gone, I want to say how thankful we are to all of you. Both Lisy and I would not be able to support our family as well as we are with out your help. How wonderful you are.

Tyler

It's Here!!!

2011-12-13T18:23:00.003-07:00

We received a call last night from the doctor telling us that we need to be prepared to begin tomorrow with Natalie. Today the final decision was made after a very thorough meeting was held with doctors from Bone Marrow and Infectious Disease. Natalie will arrive at the hospital at 5:00 am tomorrow and will receive her first dose of chemo by 6:00 AM. Since the call yesterday, I have been so emotional. I couldn't hold back the tears after speaking with the doctor. We have planned and prepared for this moment…even being a week delayed, I still fell apart. I guess it just finally hit me…it’s here. I have been drying my eyes all day. I wasn’t expecting it to be easy… I just don’t think a mother can prepare for such an event, no matter the efforts. I had to remind myself that fear and faith cannot be together.

I will make this post brief; I still need to pack her bags, etc. Speaking of packing, Natalie has some very wonderful things to take with her, thanks to many of you. Her entire body, including her head will be well loved with lots of softness. She has her favorite music set aside to be packed, including her most favorite song ever…”Song of Silence” in Peruvian style, as it is an ancient Inca tune, one Grandma and Grandpa Schellenberg brought back from their mission in Peru. She picked up a new friend today whom is also making the packing list. His name is Cheddar and he is a beautiful nutcracker her Grandmother Fish gave her. However, most importantly Jerome will be washed and ready for another hospital stay. Jerome is a cuddly stuffed elephant that was given to her by her Great Aunt Patsy during one of her earlier more critical hospital stays, since then she has had countless stays and Jerome has been there for all of them.

Thank you to all who have helped us in so many ways, even those whom we have never met. We pray for each of you that you will be blessed and that you will truly feel the love and appreciation we have for you.

Love,

Lisy

Automatic Updates via Email

2011-12-12T00:06:00.005-07:00

My Dad would like me to send him an automatic email notification of any new posts on our blog. If any of you are interested in this as well, please let us know by sending a quick email to fishesformarrowwishes@gmail.com.

Thanks,

Lisy

Update: The only issue with this is that Blogger limits it to 10. If you have a Google account, go to Google Reader, log in, click on "Add Subscription" and enter this blog address. This will then update you every time there is a post.

How to Help!

2011-12-11T23:19:00.001-07:00

I had posted this a few days ago, but decided to redo the post with a bit more information. Many of you have been asking about ways to help...one way in which I have not mentioned much is the need for blood. The girls will require between 25-50 blood transfusions during the transplant process. The doctors are aware of the difficulty it is to match their blood, due to countless previous transfusions they have had. They have developed many antibodies over time and cannot have the same blood twice. They have to test several bags before finding the right one. The quickest they have ever matched their blood is 8 hours...in fact it wasn't even a complete match, it was released upon emergency (Natalie specifically). It will be a very tricky process. Natalie and Alice's blood type is O+, however, regardless your blood type, we encourage all who are able to donate. There are many children in need. How to donate? You can contact the United Blood Services through their website or donate through the Red Cross. Sometimes the easiest way is to sign up for the blood drives that come through the community or through church groups. I recently attended a conference in Salt Lake given by IDF (Immune Deficiency Foundation), in which I learned more regarding Immune Deficiencies. A panel of doctors whom we are quite familiar with gave some lectures on the subject. It was fascinating and educational for me. I made some great contacts and want to share one thing I learned. Most everyone is familiar with the newborn screening panel done at birth. The state of Utah does not include SCIDs on the newborn screening tests. I heard that it only costs $8.00 for this additional test. I asked as to why the state does not include it. I was told that it is a lack of understanding. Something this simple perhaps can prevent others from having to endure what our children have endured. I have included the following link if you would like to learn more regarding this subject:

http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

On Wednesday we will have more information regarding the timeline of events for the girls, as we consult with the physicians of Infectious Disease.

Lisy

More News

2011-12-09T21:41:00.005-07:00

Today was a day we would find out more regarding Alice's donor and Natalie's chances of needing a biopsy on her lung. With all of the information to digest, I sometimes struggle to stay focused. Moreover, the long days meeting with doctors seem to blend together, and it takes an evening of getting the kids to bed and staring at the wall for an hour to organize my thoughts again.

Our first meeting would result in the doctors telling us Alice's donor is still in place to donate however due to an undisclosed circumstance, will need to be reevaluated and therefore will place Alice back a couple weeks to a month before she would be admitted for transplant. It is frustrating, however we understand that this type of thing happens while waiting for a donation of this sort. In the meantime they will begin searching for a back up donor.

Natalie's situation has become more difficult. The Infectious Disease(ID) physicians have said the lesions on her lung are of a calcified property that has yet to be determined to be scare tissue or of a bacterial/fungal sort. They have noticed one large lesion and other micro lesions of the same property in her right lung. A chance (not promising) of learning more about the true properties of these lesions would be a lung biopsy.(Which would set Natalie back even further for transplant). The good news is that the large lesion has been noticeably becoming smaller compared to current and previous x-rays. The consensus for the doctors was to gather a half dozen of their peers from around the country to review x-rays and see if there is any physician with experience in Leaky SCIDS to determine what to do. The reason for such a meeting is because of the seriousness of Natalie's situation. That is, if we decide to move forward with the transplant and while Natalie receives her Chemo, should those lesions have any bacterial property to them she would have no way to fight back. It would consume her body; there would not be much the doctors could do to save her. Except for one thing, that being an emergency removal of her right lung.

It would seem to be the easy decision to say... "lets take the biopsy and see what the results are." However, taking a biopsy likely places transplant back to Spring time and within that window she is more than likely to catch something to make her sick because of her compromised immune system, and again the risk of surgery with the already fragile state of her lungs.

Her countenance today, as she listened to the doctors speak became what looked to me as one pleading for mercy. We had her prepped on receiving a transplant, and now she hears of possible surgeries before hand. It was a hard day and a long ride home. Usually she brightens up after we leave the hospital, not today. Although we have told her differently, I'm sure as we drove home, she processed and spliced the conversations in the patient room together and came up with her own conclusions. One of those conclusions being that this will never end.

Lisy and I will have a decision to make, and have the hope and faith that we will have all the information possible that will allow us to make the right one. The one that will ensure her that this chapter in her life will in fact have it's end and that brighter futures lie ahead for her.

Tyler

Cleaning out my Purse

2011-12-08T14:56:00.003-07:00

It has been a wonderful day for us to be home, we are getting a lot of cleaning done. We are beginning to feel more organized and ready for the storm ahead. I have to laugh because I was cleaning out my purse (which I do often) and I found at least 7 hospital wrist bands needing to be discarded. Rather than a mess of receipts I have a mess of hospital tags...such is our life. Years ago I would collect them for memories, well I quit doing that. We are trying to simplify our life, we would have bins of those things. Soon Tyler and I will begin posting some pictures and even videos of the girls. Hope you are all well!

Alice's turn for testing

2011-12-07T17:50:00.002-07:00

Today wasn't too long, Alice had a 2 hour Neuropsych evaluation...she thought it was the greatest thing ever to play with blocks and toys. Alice did fabulous, mostly due to the fact that she loves the attention and enjoys showing off. Later she had some labs, an Echo, and EKG. Tomorrow we have a day off...HOORAY! Friday is the final day for Alice's tests, in which Monday she is scheduled to be admitted and have her broviac line placed. There is a high possibility that her schedule will be somewhat delayed as well. There are a few things we are waiting on from the donor's end.

Natalie is doing better today, the nurse came to the house and changed her dressing. Tyler and I were not there, but Grandma Schellenberg said it was a bit traumatic. She is still very sensitive; in fact she still has the hospital gown on from yesterday. She is worried to change because of the movement bothers her line. It will become less tender with time. We will find out more soon regarding her lungs. Some blood tests were done for her lungs yesterday, and they tested Tyler and I for TB because they didn't have the heart to poke Natalie anymore. If our tests are negative, then hers would be as well. We hope they will not need a biopsy of her lung, but there is a chance it will be necessary. Friday will bring more vital information.

Broviac Line today, Alice begins tomorrow

2011-12-06T20:40:00.004-07:00

We arrived at the hospital around 3:00 PM for Natalie to received her Broviac line. She was in good spirits today as she happily colored and made a necklaces as we waited for the doctors. It is incredible how well things go when your child is in a good mood. It was a good thing too as we waited for two hours before she was taken back. The procedure took the better part of an hour to insert the line through the right side of her neck and exiting out of her chest just above her heart. In the recovery room Natalie's head bobbed and leaned as her brain attempted to recalculate her bearings. She was extremely hungry from having to go without food for the day. Her first request was for a hamburger, nuggets and desert. She expressed of discomfort in her neck and chest as well as the annoyance of not being able to scratch the inconvenient itches on her back. I made sure I assisted in scratching those itches.

Natalie showed resolved today. She has done so in the past, however today she looked a little older and more experienced and anxious to get this done. As her eyes still revealed a bit of fear, I also noticed today that fear was starting to take a back seat to her desire to become well. Natalie will have a break tomorrow to rest up, while Lisy and I will take Alice in for the beginning of her preparatory meetings with the doctors.

Tyler

Small Delay

2011-12-05T18:08:00.002-07:00

Today's visit to the hospital was met with delay for Natalie's procedure. At 8:30am Natalie received her scheduled CT scan of her lungs to see if they were in fact healthy enough to proceed with the process of a bone barrow transplant. After review of the scans doctors found possible lesions on her right lower lung due to chronic infections. Therefore, before Natalie proceeds any further, the doctors will need to run more tests to see if these legions are in fact scar tissue from previous sickness or fungi that would need to be dealt with before chemotherapy. If it is in fact scar tissue, the doctors would then put her back on track to be admitted by the middle of next week.

We will be back up at the hospital tomorrow however to proceed with the Broviac line that will be inserted into Natalie's chest area. This will make it easier for blood draws and medicine to be administered. It will be a stress saver too, as Natalie is anything but a "lamb to the slaughter" when it comes to needles. Case in point, this morning they needed to draw blood and when Natalie caught wind of that information she quickly sprinted underneath the medical table to the furthest corner away from everyone in the room. Due to furniture placement, and me not being the flexible person I once thought I might have been, she really was out of my reach. I said, "Natalie, we can do this one of two ways, you may come out, or I'm coming in after you." I was praying she wouldn't call my bluff, luckily she didn't. There was no way I could have reached her. I imagined for a split second if she had called me on it that I would have had to get on my hands and knees and twist myself in a manner that would have most definitely split my pants open in front of the phlobotomist......anyhow disaster diverted. We are greatful however that the doctors are taking such precaution with our girls, and do not mind the delay if it means insuring success.

Thank you again to all of you who read and have assisted us during this time.

Tyler

Yeah, I have a blog now!

2011-12-04T00:17:00.003-07:00

My brother-in-law Jared created this blog to make communication easier. Thank you Jared! I will now post my updates rather than email them. If you would like to know what is currently happening with Natalie and Alice, check this blog. Thanks...hope everyone is well and happy.

Email From Lisy

2011-12-01T00:00:00.001-07:00

December 1, 2011

We made it through the week…it was truly long and exhausting. Somewhere along the way we added Alice onto the schedule, which made this week even busier. She will finish with her remaining tests next week. Alice’s donor is anxious to speed up the process. I don’t blame her; maybe she is hoping to donate before Christmas. We are so thankful for this sweet person who is giving life to Alice. We look forward to the day when we can communicate and possibly meet this person.

Among the many tests that were done this week, Natalie’s x-ray was somewhat concerning. There is an area in her lung which has posed a problem many times in the past that will require a CT scan. The question is if this area in her lung is a fungus, requiring treatment, or scar tissue from so many past lung infections. We cannot proceed until the doctors are clear on what it is. If there is a fungus and we proceed with the chemo therapy, she will not have any ability to fight the fungus and could be over taken by this fungus. Hopefully the CT scan on Monday will provide sufficient information, if not; they will need to take a biopsy of this portion of her lung. In the meantime we are continuing with the pre testing for Alice. There is a chance that Alice may begin the process first. Truly each day our situation changes and will continue to do so. We are so glad that the doctors are taking every precaution necessary. As far as getting things organized and ready at home…it’s coming along, thanks to all the help. We have learned a lot about what to expect after transplant regarding the girl’s diet and prevention of bacteria and illness. Here’s the condensed version. No raw foods at all (everything cooked), no deli foods, no meals brought in from outside, no fast food, no restaurant food, no food that is difficult to was because of texture, no leftovers, no reheating food, when we open a bag of anything, they can have the first serving and no more, dishwasher sanitize cycle only and the hand washed dishes have to air dry. Well this is just some of the things…the list is actually quite lengthy. It will be an adjustment changing silly little habits that we don’t even realize we have. When we first told Natalie a bit more detail about what to expect during this hospital stay she wasn’t happy, especially when we told her about losing her hair. She immediately burst into tears, and was upset. She said, “I don’t want to be bald” and then hid behind the door for some time. We continued to talk to her, it was a lengthy discussion; however, she began to feel better, then a few moments later said, “but I don’t want them to pull it out…it will hurt.” We told her it would fall out by itself, and maybe we could even save a braid of her hair before it falls out. A few days following this, Grandpa Fish was taking the boys to get their hair cut and she said, “I don’t need my hair cut”, then she began to giggle like she was so clever and funny. She seems to be more accepting of this fact. The other day her Primary teacher Sister Seamons knitted her a darling brown hat with long braids attached to it. You have to see how cute it is to know how I felt when each of the kids put it on and danced around laughing, including the boys.....another sweet moment of comic relief for Natalie. My eyes began to swell when I watched how sweet this was. We are so thankful to many wonderful people for all the big and little things that have made this journey that much easier. Thank You, Thank You to all!!!! More updates next week. Hope its okay with you all that I am adding more details and description to my posts/updates as this is also my journal.

Lisy and Tyler

Email from Lisy

2011-11-26T23:57:00.000-07:00

Nov. 26, 2011

Hello,
We hope everyone had a wonderful Thanksgiving. We enjoyed Dad’s turkey, as always! Today is Natalie’s baptism. She is super excited. Tyler has practiced with her and I have tried to help the kids practice the song that all the children will be singing for the special musical number. However, I sometimes wonder if I do more damage than good. I hope in Heaven I will have a beautiful singing voice. Wednesday we talked with Bone Marrow again. They emailed us a schedule of next week’s events. Wow, that is all I have to say. It will be a marathon of appointments. Because I want to begin blogging again for a journal record etc I am going to include next week’s schedule for our journal purposes and for those who are interested in knowing what will be happening. Eventually, I want to copy all my email updates into our blog…and then I will just email everyone the blog address so you can follow what you wish. Thanks again to everyone for all you do. This would be impossible without the love, support, generosity and faith of so many.

Tyler and Lisy

Pre-Translplant Schedules

2011-11-25T09:42:00.001-07:00

An email from Lisy

2011-11-19T23:21:00.001-07:00

November 19, 2011

Hello again,
First of all, this is the most I've ever been on my email, I haven't been much of an emailer until lately...mostly because I have a hard time sitting down to the computer without major interruptions from Alice or Evie. Hope you don't mind me sharing some of my thoughts. Evie was up early this morning, we have been enjoying each other, now she is sleeping again...so I thought I would just share a quick thought. I usually keep my scriptures beside the rocker chair where I nurse Evie, in hopes that I can read some while sitting there. Mostly, by the time I sit to feed her, I'm too tired to complete even a small amount of verses. I've been struggling to get very far with my reading. I'm not getting very far, very fast. I was stuck in the Book of Jacob for a long time to put it nicely. However, when it came time to make this decision regarding transplant, I so happened to be as far as Jacob 5. Most are familiar with this chapter, I have read it countless times over the years. I have always loved this chapter....as long as it is. :) But this time I understood something else. I have likened unto my own children, the Lord's vineyard of the olive trees. I love verses 17, 18, and 75. The whole engraftment process really came to life for me while reading this...I guess you could say it gave me courage to make this decision. Again, thanks to all for your love and support!

Lisy

Email From Lisy

2011-11-17T23:56:00.000-07:00

Nov. 17, 2011

Hi Family,
Hope all is well with everyone. FYI--Natalie's baptism will be at 3:00 on the 26th. I ordered invitations and such online but realized they wouldn't arrive until just before...so in the meantime, consider this your invitation. :-)

The bone marrow doctors called today a couple times. After much discussion, we have decided to transplant both Natalie and Alice together, if things continue to go accordingly. They have found a perfect match for Alice. They are matching 10 genes and all 10 match. The nurse said that they were very surprised to find this match as it isn't always the case to find a perfect non-related match, as well as being very surprised that it happened this fast. This is a huge relief for us. They said that the donor is female and younger. She must be at least 18 to donate. This is all we know about the donor; once a year has past we will be able to contact this person. They contacted the donor on Friday and all the testing was done by Wednesday. Apparently this is very unusual. It is normally a three month process. Because of this wonderful news we all feel like we should proceed and start Alice as well. She is healthy at the time, and has a match ready and available. It will be a rough go with two girls at the same time, but in the long run it will be easier. Here is a timeline: The Monday after Thanksgiving we will proceed with all the preliminary testing for Natalie, Alice and Blair. They hope to have Natalie admitted by Dec. 5th and shortly thereafter Alice. This means that her transplant date would be the 13th or so. By the end of January or so the girls will be able to come home if all goes well. While the girls are in the hospital, Matthew and Blair will be with Grandma and Grandpa Schellenberg maintaining a fairly normal life going to school, etc. Tyler and I (with Evie...if she cooperates) will be staying at the hospital with Natalie and Alice. Tyler is closing his shop at this point. Maybe he can open it again when we are through this--who knows. After transplant we will be staying in Highland together under quarantine. Obviously, we are going to need a lot of help with different things. We will need some designated people to stay with the girls on weekends or something. We will need help when we are home, etc. When we know more of what exactly we need, we will make a more specific plan. Thank you already for everything you have done. Most importantly and foremost we thank each of you for your prayers, etc. There is no question that Heavenly Father has been answering these prayers. Tyler and I take no credit for any of our blessings for we know they come from those who have been praying for us. We love you!!

Lisy and Tyler.

Email From Lisy

2011-11-12T23:55:00.000-07:00

November 12, 2011

Hello again,
On the 9th we had another bone marrow consult. The plan is to begin the process with Natalie as soon as possible, meaning about the first or second week of December. Unfortunately she will be spending Christmas in the hospital. Before hand she will need to clear many tests and have some dental work done, etc. They have to be in top health going into this process. Little Blair will be a real hero…he has stated that his blood will be Natalie’s medicine. He will be very sore after donating his marrow. Natalie will have her last day of school this next week and will not be able to return for a year. I thought maybe on occasion she could Skype with her classmates; her teacher thought that was a wonderful idea. Please if any of you would like to Skype (the cousins, etc.) it will be much appreciated. She will be admitted the first part of December and will hopefully be able to return home by the end of January. Natalie’s baptism date was scheduled for Dec. 3rd. The doctors advised us to move up the date. They felt it best to have that done a couple weeks before the whole process begins. For anyone who can make it, her new baptism date will on the 26th of November. I am trying to get the Stake to allow us to have the font in the afternoon. I will try and email an official invite. We will just have the meeting at the church with no gathering afterward. Thanks again and always to our amazing family and friends. We love you!

Lisy and Tyler