The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Saturday, December 31, 2011

Happy New Year!--Day 10

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.

Friday, December 30, 2011

A Visit From Matthew--Day 9

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's Touch

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.


Thursday, December 29, 2011

Warm Anti-bodies

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.

Wednesday, December 28, 2011

Mouth Sores

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


Tuesday, December 27, 2011


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.

Sunday, December 25, 2011

Merry Christmas

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.


Day Plus 3 and Christmas Eve

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.


Friday, December 23, 2011

Day Plus 2 and David Archuleta

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.


Day Plus 1 and First Blood Transfusion

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.


Wednesday, December 21, 2011

Marrow For Natalie--Transplant

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.


Tuesday, December 20, 2011

An Early Morning

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

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's 18 minutes past midnight, I better get some sleep. More ahead this week, as much will be happening.

Monday, December 19, 2011

A hard night

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.

Sunday, December 18, 2011

A Cousin's Tribute

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

Saturday, December 17, 2011

A Better Day

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

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 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 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--


Thursday, December 15, 2011

Double Dose

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.


KSL News Story & Video

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

KSL Website Story

Video of KSL News story

Wednesday, December 14, 2011

KUTV News Story & Video

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

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 ICS 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.

Tuesday, December 13, 2011

It's Here!!!

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.

Monday, December 12, 2011

Automatic Updates via Email

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

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.

Sunday, December 11, 2011

How to Help!

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 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 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:

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


Friday, December 9, 2011

More News

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.

Thursday, December 8, 2011

Cleaning out my Purse

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!

Wednesday, December 7, 2011

Alice's turn for testing

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.

Tuesday, December 6, 2011

Broviac Line today, Alice begins tomorrow

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.

Monday, December 5, 2011

Small Delay

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.

Sunday, December 4, 2011

Yeah, I have a blog now!

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.

Thursday, December 1, 2011

Email From Lisy

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.

Saturday, November 26, 2011

Email from Lisy

Nov. 26, 2011

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

Friday, November 25, 2011

Saturday, November 19, 2011

An email from Lisy

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 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 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!


Thursday, November 17, 2011

Email From Lisy

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 in the meantime, consider this your invitation. :-)

Saturday, November 12, 2011

Email From Lisy

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

Friday, November 4, 2011

Email from Lisy

Nov. 4, 2011

Hello again,
Today Natalie and Alice went in for some routine antibody treatments. Natalie did well with the treatment. She struggled with the IV placement. It took four different pokes to finally get it. She was such a trooper. Alice on the other hand had a reaction to the treatment and became quite ill instantly. She will be spending the night to keep a close watch on her and to try again in the morning with a new dose of the drug (treatment). She also had to be poked a few times for labs, etc. We didn't have the luxury of using her PICC line for the labs because they needed it from another source. I had Natalie, Blair, Alice, and Evie with me the entire began to get long. Although, with that said, Evie fussed very little and Blair was extremely patient. This was a blessing for me. Tyler came around 5:00 to stay the night with Alice so I could take the rest of the children home. Yesterday I spoke with Bone Marrow and they did say that they have located a couple of promising matches for Alice. They of course need to do further testing on the found matches, etc. This takes a bit of time. I however, would not be surprised if Natalie and Alice both end up going through the transplant process together. I'm very thankful to the people on the bone marrow registry list. I was so impressed to hear of the millions of people who are on this list. They even have to pay their own fees to be on the list and receive the initial testing. Again, thank you everyone for all your help and prayers.


Wednesday, November 2, 2011

Email From Lisy

November 2, 2011

Hi Family,
Today we met with the immunology team for another consult. This meeting was very helpful for Tyler and I. The Immunology doctors have done a lot of research and work in our behalf and we consider their opinion to be heavily weighted. They have provided us with more information regarding future outcomes in proceeding with transplant or choosing not to transplant. We received good news and bad news today. The good news is that Blair is a match for Natalie. The bad news is that we do not have a sibling match for Alice. We really thought maybe Evie would be a matched or hoped anyway...she is not. Thus, our situation has changed a bit. Because Alice does not have a sibling match, they will begin searching on the registry list. This process can take a while...a few months or so. In the meantime we are highly considering beginning the process with Natalie. The timing for this will take a few weeks...each Natalie and Blair will have some extensive testing done prior to the procedure. We are not sure when all this will begin. Again we will continue to keep you posted. Thanks everyone for your support, etc.

We love You!
Tyler and Lisy

Wednesday, October 19, 2011

Email from Lisy to Family and Friends on Oct. 19, 2011

October 19, 2011

Hi Family,
Hope everyone is well and happy. As some of you may know we met with the bone marrow transplant team and did some more tests on the entire family. Just to keep everyone posted here is the nut shell update. Natalie and Alice have a condition called "Leaky SCID" (severe combined immune deficiency). The literature says that 1 in 40,000 people are carriers of this gene, and a child can only be affected by this gene mutation if both parents carry the gene; which is a 25% chance that a child from two carrier parents will be affected. There are only two cases in the entire U.S. that are reported each year. Basically we have filled the statistics for the year. The treatment is a bone marrow transplant. We discussed only Alice with the bone marrow team. At this point we are considering transplanting Alice. We are not discussing Natalie at this moment in time. However, they do have the same gene sequence mutations. The transplant process will be such. They will first look for a Donor within her siblings. We know already Matthew isn't a match, so we are left with Blair and Evie. If Blair is a match we will begin the process soon, if Evie is a match then we will wait until she is a bit bigger...approx. 6 mos. Old, which would bring us into Feb/March when we begin. If neither of the two is a match then they will look at the bone marrow registry for a match. This process takes a bit of time depending on how difficult Alice will be to match. If there isn't a match on the registry list, then they will begin to look for a match from cord blood. Many of you have asked about being potential Donor's. The doctor said that the likely hood of a family member being a match is rarer than a stranger from the list. So he said to encourage those who want to donate to donate blood, because throughout the process they will need plenty of blood transfusions. Alice will go through many tests before the process starts, for example....liver, heart, lungs, kidneys, brain, even dental tests and exams will be done to ensure a safe baseline. Then she will be admitted to the hospital and go through eight solid days of chemo therapy, losing her hair, etc. Once her entire body has been stripped of its marrow and blood, they will then give her the new marrow. It will take about 3 to 4 weeks for her to adjust and begin to produce new cells. She will be in the hospital for approx. two months during this process if all goes smoothly. Once her blood counts come up she will be able to go home under strict regulations. She will be fragile and need to return for frequent testing for at least the first 100 days post transplant. Past that point she will be less fragile but will still require close watching. If she develops Graft vs. Host disease then the entire process is slowed down and complicated. At severe levels of Graft vs. Host she will need another transplant or even worse it could be fatal. A sign of Graft vs. Host disease usually occurs within a few weeks post transplant, if it occurs. Graft vs. Host means that her body is rejecting the new marrow and does not want to accept it as her own. A perfect sibling match will reduce the chances of Graft vs. Host disease. The success rate is 90%.....fatality rate is 1 in 10. Long term side effects of transplant are infertility and possible chronic Graft vs. Host disease. When Tyler and I came home we were extremely overwhelmed and exhausted. Mom, thank you for coming with today and helping us.

Okay, so this wasn't the "nut shell" version I guess....but after a three hour consultation it truly is condensed. If you are interested in knowing more or have questions, just call Tyler or I. We have a lot to think about and consider. As we obtain more information throughout the process we hope to make the right decision. We should know in two weeks if we have a sibling match. Thank you everyone for all your support. We love you!