Friday, May 30, 2014

Day 5, 6

Well Alison has finally reach the point where here white blood cell are now zero. For the next week or so her bodys ability to fight off infection is non-existant. So we sit in her hospital room and wait it out. We can still walk around the hospital floor but our outside trips are over. Alison continues to walk for about for about 1-2 hours a day which is amazing.

We had two of our fellow patients die today. One of them I knew his wife we would taught daily about our spouses. Her husband came back to the hospital after completing his bone marrow transplant with an infection that he could not fight off. I had an opportunity to talked to her after his past away. She wanted to keep my spirits high telling me that my circumstances would be different. The bone marrow transplant flloor is like a little family each of us hoping success for each other. Hoping that all of our circumstance would end with success. At the same time we all become well aquainted with sorrow and grief and the possiblity of things not happening the way we would want.

At the same time life is so amazing. Several minutes after this event I heard the lullaby song play over the intercome signifying the birth of a new child at the hospital.  Just like that the fragilities of life just hit you and you are thankful for each day you have with the people God has given you to love.

There is something to be hopeful of each day. It does take a conscious effort to not be consume by the things that are happening in your life. I think we often assume we are happy go lucky people completely naive to the fragility of our situation. On the contrary we make efforts everyday to focus on what gifts God has given us in our time of trial.

As always so many of you who read this blog are apart of the everyday miracles in our lives. We appreciate your prayers and sacrifice on our part. At this time we need prayers that Alison will stay free from infections and diseases for the next year but especially in the next 100 days.

Tuesday, May 27, 2014

Days 1-4






 Day 1 through 4

Alison has been doing really well. With the destruction of all of her stem cells her blood, white cells, and plaletes number are going down.. They will hit zero and then start to climb back up in about 7-10 days. After they climb and if she is still eating, walking and without any significant sickness or infections she will be able to go home. It's a very fragile time for her body her last day outside for a while was yesterday. As you can see was able to go on a walk outside with the kids during memorial day. Just across the street is Hatch Chocolate Factory. They have an iced hot chocolate that is very yummy. Thank God her food restrictions doesn't include chocolate or ice cream. As she loses vital red and white cells her energy levels have dropped. I can actually keep up with her right now while she walks. Despite her they take so much energy at this point in her life. We take on each day and make it the best. It was great to spend time with the kids yesterday. Its nice to have the whole family together. We see God's hand upon our children as they continue to excel in school and is having more patience with each other.

We really want everyone to understand that like most people we often get worried, scared even about what could happen during these fragile times in my wife's life. We learned during her first cancer treatment that worry, fear, and all those negative emotions don't change anything. They only make it harder to endure what we need to endure right now. So finding strength in God and our family is what helps us to endure well during this time.

We would like to thank you for your continual support and prayers during this time in Alison's life.




Sunday, May 25, 2014

What's your excuse?

Hi, This is Cathy--

I went to visit Ali on Thursday and part of Friday.   So chronologically this post should've been made before Desi's last one....but I'm a little bit slow.     My sister Jenny was there too. We walked, talked, ate good food (thanks to Jen) and watched a movie.  We also texted with our other sister Amy (so it was like a sister's weekend get away?)  Only next time we're planning a tropical location!     As I drove home in the car, I had a few hours to think about my time with Ali.   I titled this post, "What's your excuse?" because as I reflected on some of the challenges she is facing, I realized that I still make excuses for certain lazy behaviors.    I just wanted to share a couple of the ways that I have come look to Ali for inspiration in my own life.

First, a few months back, Ali shared with me that it was through the first cancer experience that she began to better understand the role of the Savior and it became very real to her.  As I have talked with her through both cancers, I can feel a spiritual power in her life.  To be with her and Desi and their family feels like a spiritual experience, and they have gained powerful spiritual insights as they have travelled this road.   Ali has shared many times that she knows God's hand is in her life and she has full confidence that He can heal her, she also knows that full confidence in Him is aligning her will with His.  To have faith like this in God,  brings greater peace to your life and meaning to adversity.  Ali and I talk often of angels who attend all of us as we journey on earth.  I think that heaven is very close to her and her family as so many prayers are being said in their behalf.     I'm assuming that most of us won't have cancer (or at least we won't be faced with it at such a young age) but, we will have other trials that are uniquely ours;  Gifts from God to grow closer to Him.   We can turn away and become angry. Or in humility we can turn towards Him and we can really come to know and believe that He is real.   Ali and Desi have been examples to me of turning to our Father in Heaven in a very difficult time.     One of the questions I asked myself on my drive home was..... if you don't know that God is real and wants to be involved in your life, if you haven't taken time to feel the power... what's your excuse?

I was having a hard time getting the video I took of Ali on our walk to load on the blog, so I resorted to this photo which obviously is not her.   I thought it would give you some perspective on what it's like for her.  Whenever she leaves her room (even to walk in the hospital halls) she has to wear a yellow hospital gown, sticky hospital gloves, and a big fluffy white mask that covers 3/4 of her face.   Even when she walks outside the hospital, she is dressed like this too.  Germs are dangerous for her with her immune system knocked out.



Now to the second thought I wanted to share.  Ali just feels better when she is moving.  She has cultivated a happy heart, toned muscles and also a mental determination required to do long distances.   She doesn't make excuses for herself (before or even now).   She is not a complainer, and doesn't accept whining.  She is tough and determined.   While I visited Ali we walked around outside the hospital 5 times (3 miles).    When she walks inside the hospital up on the floor, she still has to wear all of the gear that you see in the picture, and sometimes pull an IV pole with her.    The nurses said that 7 "laps" in the hall is a mile.  So the other day Ali did 4 miles inside (that's 28 laps around a nurses station).  I was again inspired by Ali and her attitude.  So below I created a dialogue of excuses we might make and Ali's come back for them.
The bottom line is:  What's your excuse for not going on a walk today?

                               
The  excuse:   "I'm too tired today"                
Ali's Voice:  "Try sleeping in a noisy hospital room"

The excuse:  "I don't feel like it"                                    
 Ali's voice: "Try having massive Chemo drugs in your body"
                                                                                 
The excuse:  "I look funny when I run"                                          
Ali's voice:  "If you wear a big mask and put on a gown,
                      no one will know who you are"

The excuse:  "I don't have a good place to exercise"            
Ali's voice:   "Hospital corridors work"

The excuse: "I get bored when I work out"                              
 Ali's voice:  "Try 28 times around the nurses station"        

The excuse:  "My (fill in the blank) hurts"                                
Ali's voice:   "Push through it, it will go away"                                                                                                                                                    
                     "You'll eventually build up your endurance"
                     "What doesn't kill you makes you stronger"
                     "Try sleeping in a hospital bed for a few weeks"

The excuse:  "I'm  afraid I won't finish the race"                              
Ali's voice:  "Don't talk to me about being afraid"

The excuse:  "I don't have a friend to go with"              
Ali's voice:  "You can take my IV pole if you want"

The excuse:  "This workout is really hard"          
Ali's voice:   "I know it's hard, but you CAN do it!"

The excuse:  "I don't have time"          
Ali's voice:  "If you shave your hair, you'll have at least 15
                      minutes more to work out everyday.

So, that might have sounded cheesy, but it's true.... Ali could have lots of excuses to sit in bed, but she doesn't.  She is a fighter.  And I'm so proud of her!  
                                                                                                                                                                    
Remember to log miles and send them in at the end of the month to 50kforali@gmail.com

I also wanted to share a few pictures from last weekend.
Pics from Sat. May 17th--We had a family wedding (Morgan and Chris)  and most of the family was able to see Ali during the day.

This picture is of Ali and most of her kids (except for the one who was playing in the State Championship Rugby game).



This picture is of the State Rugby Champions (Way to go Mateen!)



Grandma and Grandpa and 5 of the 8 siblings.






                        











Saturday, May 24, 2014

Day 0 transplant time!!!

 Well Transplant day has come and gone!! May 23,2014 is now her second birthday!  It took all of about 20 minutes to transfuse the stem cells. I was doing laundry for my wife and almost missed it  :)  She managed it great. She tolerated the toxins that are used to perserve the stem cells just fine. We took a walk right after the stem cell transplant for a few miles which was great(and amazing).
  
This is the stem cells reentering the body. I love the superwoman shirt. It tells alot about my amazing wife. Alison has been a superstar throughout this. Before we came our prayers were to be uplifted and streghthen through each process. Alison's ability to continue to walk, eat, and breath is a small miracle we acknowledge everyday. We have learned to be very specific in regards to how we pray. We are thankful for our answers to prayers and we are willing to submit to God's will regarding Ali's health. 


This is the container the stem cell bags come in.  They come in freeze dried, are thawed, and then tranfused into the body. 


 This sign said, "Cell' ebration Day" We are thankful for all the nurses who do these things to show they care. The nursing staff and doctors here at LDS are great. This is a great day. We just hope and pray we are in the 60 percent that recieve a cure from this! The next couple of days her red and white cells will continue to drop. It will takes several weeks for the stem cells to create red, white cells and platelets that are mature enough to help increase her immune system. Until then she will need blood tranfusions and will lose some energy while the regrowth begins. 

As always thank you all for you prayers, time, sacrifice and kindness as we go through this process of healing. 



Negative Day 3,2,1- Walking Outside



So Monday through Thursday the doctor let Alison walk outside. We walked around the LDS hospital complex about 4-5 times each day. It's in the avenue's of Salt lake so it's uphill or downhill. At one point I thought man can I keep up with this women!! :). Anyway grateful she still has the strength to walk around. It crazy what we take for granted in our lives. 


This is Alison below eating bacon!! Keeping food down is becoming harder and harder. We love Salt lake for all the great places to eat but watching her throw up spaghetti today was hard for the both of us. Luckily she has a husband who is happy to eat all the leftovers. 



Prayer is important to us. At this point in the process the only thing that is for certain is our belief in God and our ability to improve our ability to care for our family and everyone around us. We have been uplifted by patients that are leaving successfully and patients who are staying positive while here. This sweet little old lady was next to me walking the other day and I asked her, " How are you?" and she said, "Come on, I'll race ya!" It's humble to see people who have to face the most difficult circumstances cheerfully. I am thankful for the fight my wife has. She doesn't let the fear of the unknown keep her from taking one step at a time. We just hope she throws up less and continues to move through this the best she can. Desi


Monday, May 19, 2014

Day -7, -6, -5, -4

 So we are in the hospital for Alison's stem cell transplant!! We have completed negative day 7-4. When we get the official stem cell transplant that will be day 0 which will be this Friday!!

So far we do several types of chemotherapy. Some Alison has used before and some have been new. She is managing the treatment and walking 3 times a day. Finding purpose in little things is a blessing right now. Alison has the strength to walk about 5 miles each day and it helps her feel she is accomplishing something. Most of the time we are spending time watching TV. The doctor's say that bored is better than sick! So we will take bored any day. Her immune system is slowly dropping. In a few days she will take a chemotherapy that will completely wipe out her immune system. The reason why cancer patients get stem cell transplants is due to the aggressive nature of the chemotherapy that is used to kill all stem cells in the body. We just hope and pray that this will work and get the last remaining cancer that is in her.

As you can see from above I am sleeping a little bit better than Alison. It hard to be away from her right now. She has chemotherapy all day and night and I would hate not to be around to help and support her when she needs me. It's been great that grandma and grandpa are around to help out and we don't have to worry about the kids being taken care of. Very thankful for Google Hangout!! We talked to our kids frequently via webcam and it makes us all feel so much better. Overall it been fun working with the nurses here. I know where the diet coke is and I know where to get Alison ice water, and warm blankets. Luckily we enjoy each others company and we have laughed alot since we have been here.

We want to thank everyone again for the prayers, thoughts of kindness, and service which has been a blessing to our family. Desi

Sunday, May 11, 2014


 So this was the week we collected stem cells!. As you can see from above Alison is hooked up to the stem cell collection machine. There are two lines. One going into the machine, and one placing blood back into the body.
 Above is looking down into the machine where you can see the blood being separated. Yellow is plasma and the red is the remaining blood and one red line is the stem cells.


 This is the stem cell tube. By the coloring they can determine how many stem cells they are collecting. Alison needed to collect between 5-10 million stem cells. The collection can take on average about 2 days. I am happy to report that Alison collected 21 million stem cells in a day! The nurse said he has only seen that much get collected in a day once before. We were happy to have rest of the week off. Reality is setting in though! Deep down you are hoping and praying some miracle will come along where they will tell you you are healed and you don't have to go through anymore of the process.  As the days get closer we are realizing that is just not the case! So we keep moving forward with our reality and get through it day by day.  Alison can't wait for the day she can have hair to comb and a healthy body. It's amazing what we take for granted everyday. There are so many little things we can overlook until  it's not there anymore.  So be grateful for the little things you have everyday!  She feels pretty healthy right now which I think is the most frustrating thing.  We are hoping and praying, knowing the Lord is in control of the outcome.

The State Capitol building is across the way from LDS hospital.  We had  fun this week taking selfies. Lighting and actually getting the capitol in the picture was a challenge for Desi! He is still working on his selfie skills!! Haha


Grandma and  Grandpa have been helping out with the kids! We are so grateful for their help, love, and time they have spent driving back and forth, fixing things around the house, doing laundry everyday, making meals for the family, golfing, date nights with the girls, and everything else they have done! They are an amazing example of selfless love and service.
I just would like to thank everyone for the kind words, food, money, and time spent shuttling our children around. We have been humbled by some many people who have gone out of their way to show love and support.  P.S. Happy Mother's Day to all you wonderful mothers!  Alison got a superwoman shirt she got to sport at church today!



Thursday, May 8, 2014

Be Brave! Climb your Mountain! and April Miles

Hi All, This is Cathy (Ali's Sister)


This month Ali has a bit of a  hill to climb as she will be admitted to the hospital for the stem cell transplant next week.   I asked Ali if she had a thought for the those participating in the Miles for Ali (50K Ali's way)  and she shared this challenge...

Do something or try something that you have never done before.  Go outside your comfort zone and try something that is hard for you.  

A friend shared this thought for Ali in an email:
"Most of us try to avoid hills, but what's so good about flat?  Think about it:  flat tires, flat hair, flat returns and --the ultimate--flat lining.  Life happens on the hills.  They're opportunities to prove to yourself that you're stronger than you ever imagined.  If you never attempt the ascent, you'll never know the thrill of swooshing down the other side."

Since we don't want 2 blog posts in a row without pictures, here is something to get you thinking about your own mountains:   Mt. Borah, Idaho's tallest peak.


Here's a view looking down  from the top:


So, I would encourage you all to take Ali up on her challenge.  Be Brave!  Go Climb Your Mountain! Do something hard and go outside your comfort zone.

For those participating in in "50K Ali's Way", see below.  We are on track to get our 50,000 miles in 2014.

MILE TOTALS:
January-- 2,164
February-- 4,148
March--7,313
April --5,401

Total  19,028

Great Job!  Keep sweating and sending miles.  If you don't know what it's all about, click here.


UPCOMING  EVENTS--


  • July 18th & 19th--Friends and Family are having a benefit garage sale in Idaho Falls.   Many  have cleaned out their garages and basements and donated items for this garage sale.   Thanks for all who have given items.   If you want more info about this, send an email to 50kforali@gmail.com



  • August 30th--Family friendly 5k in Spanish Fork.  Start training now.   More info to come later.





Sunday, May 4, 2014

Wish we had some exciting pictures to post this week, but we don't.  This was another emotional week.  We had some dear friends whose mother tragically passed away this week.  They have children our kids age.  I had a few nights I cried myself to sleep. Worrying about their family, wondering if this will be something my family will have to go through.  It was a surreal moment for me.  As much as you try to stay positive, these little thoughts pop into your head. Then comes worry and doubt about everything.  How do you separate being realistic with having faith?  I don't have a great answer. All I can say is, I know as I keep pressing forward even though I'm don't know the outcome I receive little bits of hope, comfort, and strength that I can do this and we will make it through everything.  The Lord knows these things aren't going to be easy for us. He knows we are going to doubt. Sometimes just doing what needs to be done is showing that hope and faith that we want our prayers to be answered, that we want things to work out. So I continue to move forward (having good days and bad days), but keeping that hope that things will be OK no matter what.
      We saw the doctor this Friday to go over all the test results. We are good to go with my own stem cells and everything else looks good to move forward with the transplant. I did have to take a pregnancy test because my HCG level was high.  You should have seen the look on Desi's face.  I think he went into shock for the 15-20 minutes we had to wait to get results back. He just kept looking at me like, "What the...".  Results came back negative and we I got my first G-CSF shot. This shot starts producing my stem cells in my bone marrow. So I had to have it Saturday and Sunday as well.  Monday the 5th we go in for central line placement and I will receive a shot that releases the stem cells into the blood.  The doctor said one of the major side affects of this shot is the loss of cash from your wallet because it's so expensive.  :) Desi thought that was funny! He's always up for a good joke! Tuesday the 6th we start stem collection.  This process could take one day or more. If they don't get it the first day, I will have to go back up that night to get another shot to pull more stem cells out. So we hope and pray my stem cells cooperate and can be collected fast! They are guesstimating I will meet the the doctors on Wed the 14th, receive another scan, and be admitted into the hospital that Thursday or Friday. That is the tentative schedule. The mountain keeps getting steeper and steeper. We just need to continue to climb until we reach the top!