Ali's Story

Ali’s Story


Alexandria (Ali) is the youngest of 6 kids! My husband and I married in 2013 when she was just 2 years old. We blended our family (his 3 kids and my 3 kids) making Ali, the baby! She has been adored by all her siblings and has been the light in our lives!







It was barely 2015 when I noticed Ali sleeping a lot. She had just turned 4 years old and would occasionally come to me saying her legs hurt. The pain would come and go, so as a mom, you brush it off as growing pains and are grateful your 4 year old still takes naps!! However, the pain wasn't getting better. After my mom came to town to visit, she had a very strong feeling to take her in. We made an appointment with our pediatrician who then told us to go to the local emergency room to have her looked at. There, they drew her labs and told us they suspected leukemia. She was put in an ambulance and rushed to Primary Children's hospital in Utah where they then took another sample of blood. On its way to the laboratory room, the samples were accidently dropped and the nurse needed to take another sample. Holding down my screaming daughter for the third time that night felt like torture. She kept looking at me confused wondering why I was allowing someone to do this to her. Little did I know, that night was just the beginning. At 3am, Feb 15 2015, she was diagnosed with very high risk Acute Lymphoblastic Leukemia.





After diagnosis we spent 2 weeks in the hospital in the ICS unit of Primary Children's Hospital. It seemed like the longest 2 weeks of my life. My husband and I slept on a small sleeper sofa at her bedside together and never left her side. Nurses and doctors constantly came into our room trying to educate us on our new life. The medical terms and information given made me feel like I was learning a new language. Everything was foreign and overwhelming. Before they released us, they gave us a small tour of the unit and showed us where we would be receiving the majority of her treatment. I remember as we walked down the hall, I felt as though I was being "sentenced" to a road I did not want to go down! The clinic was cold and gave me a chill that I'll never forget. They took us down the hall of the clinic to show us the infusion chairs. As I saw all the little bald heads and all the kids with tubes hooked up to them, my heart just pounded. How could this happen? My little girl would now be going through this! That is when reality really started to sink in. This was now my life and there was nothing I could do about it!


Chemo was hard and scary. Ali had a few allergic reactions to some of the chemos given. In a matter of seconds she went from playing, to not being able to breathe, swelling up and vomiting all at once. After enduring 2.5 years of treatment she was able to ring the no more chemo bell in June 2017!! When we rang the no more chemo bell at the end of treatment, I was extremely emotional. Knowing that you had to give your child poison in order to save their life was a very difficult thing to grasp. I was so grateful to be done and move forward with our lives.




Unfortunately in April 2018, Ali started having fevers with no other symptoms. My mama heart panicked as the fear of cancer relapsing always dangles over your head. A week later it was confirmed that Ali had relapsed.




She started a phase called reinduction where they give you intense chemo with hopes of remission after 30 days. The day I packed my bag in preparation for that 30 day stay was so heavy. I felt angry, sad and so many emotions. We had already battled this beast and I did not want to battle this again. It just didn’t seem fair. Seeing her having a port placed, hooked up to her dreaded machines and losing her perfectly grown out hair once again, felt like a punch in the gut.

Unfortunately after those 30 days were up, they tested her bone marrow and found she did not reach remission like the doctors had hoped. She was then moved to a higher risk of leukemia called relapse refractory ALL.

Months followed of more harsher chemo but nothing was working. Test after test of let down. Finally, in Sept 2018, she had Car T therapy (Kymriah CD-19) and did great. 30 days later she was cancer free!! Unfortunately, the celebration didn’t last long. 90 days in, we learned the cells had stopped working. She now needed a bone marrow transplant.





Hearing Ali needed a transplant was the scariest feeling I felt. She had 0 perfect matches for a transplant in the whole entire world wide registry! Many of my fellow cancer mom friends had told me their child had 100s if not 1,000s to choose from. How could Ali not even have 1?

Because of this, I was her donor. I qualified as a half match since I was her mother. We were told that this haplo donor process had proven to have good results, so although we were scared, we were hopeful. She had her transplant Jan. 11, 2019 and all went pretty smoothly!! After a transplant, you are required to stay close to the hospital for 100 days. Since we lived over an hour away, we were told we needed to stay at the Ronald McDonald house without our family until she was cleared to go home.


It was really hard to be without my husband and other 5 children for that long. Ali and I missed everyone so very much. She especially missed her pets! We tried to appreciate the time we had together and soak up the girl's time. We got the ok to come home in April 2019. It felt SO good to be home.

Unfortunately, on day 100, Ali had another bone marrow aspirate where we learned Ali had relapsed once again.

Every day we fought to control her disease. The plan was now to fly to a hospital out of state (Stanford Children’s Hospital - Lucille Packard’s) and enroll Ali in a trial of a different version of Car T. Ali flew out in May and had her cells collected. We were told by her doctors that it would take a week to process them and then we would come back for her procedure. A few days after her collection, the hospital called to let us know there was a problem with the lab. They closed the lab due to maintenance and couldn’t process Ali’s cells for 6 more weeks. I was angry, frustrated, but most of all scared at this news. While waiting for the cells, Ali’s leukemia had spread to over 90% of her body. She needed to somehow hold on. She was hospitalized and given more chemotherapy to try to reduce her burden, but her body was not tolerating it and she got extremely sick.









She was completely out of it and only remained awake for around 30 minutes of each day. She cried to walk and was so weak. She was dying. One night she started reaching for things in the air. She was delusional and I thought this was the end for her. My husband rushed to the hospital to be by her side. He gave her a blessing and we prayed together. She made it through the night and on Monday, July 1st, Ali was life flighted to Stanford where she was finally able to receive her Car T cells. After 28 extremely hard days, she was declared cancer free for the 4th time and was released to go home!! What a miracle!

We spent 5 months at home before learning Ali had relapsed again. We flew back to Stanford Children's at the end of January 2020 where Ali received a second dose of the same Car T cells. Once again, 28 days later, Ali was declared cancer free and was released to go home. This was her 5th victory against cancer!!






The days before our departure home, we had many meetings with several different doctors explaining how there were no more medical treatments available to help Ali. We needed to decide as a family whether we wanted to have quality of life or quantity of life. We will Always fight for Ali, but now, we had to figure out what we were fighting for. All any parent wants is for their child to be happy and healthy. Sometimes health isn’t in the cards, so as her parents, we will do everything we can to help her to be happy.

We are home now and are trying to soak up every moment with her. The doctors have warned us that it is just a matter of time before her cancer will come back. When that happens, her time here on Earth will be short. That thought is excruciating and debilitating. Just writing it down makes me sick inside. Every 3-4 weeks we head down to the hospital to get labs. We have tried a new medication in hopes to help her stay healthy. We have also added many supplements, vitamins and healthy foods to her diet.

This journey has been long, hard and emotionally draining. However, through it all, Ali's light has remained a constant. She enjoys everything about life and brings everyone so much joy. I am so very grateful, blessed and honored to be her mom.


#iwanttobelikeali

Ali's relapse

We found out Ali's cancer had come back on April 11, 2018 at her 10 month check up. When Dr. Barnette called, my heart sunk, it was hard to breathe and I couldn't hold back the tears. Leading up to her check up, Ali came down with an extremely high fever of 104.5 that lasted for 4 days accompanied by a headache. I was a mess those 4 days. My first thought was that she had relapsed. Each month she would go in for labs, I would get nervous. Everyone had told me to not worry so much and just think of her as a normal kid. That she was fine now and I just needed to calm down. No. A mother's intuition is always on the mark. I knew I needed to worry for some reason or another and now, here we are.

It has been almost 2 months since then. We finished our first block of the re-induction phase which required us to spend over 30 days in the hospital. Holy moly was that HARD!! I felt like I lost a year of my life in just 30 days. I would spend all week with Ali and Jess would spend the weekends. Jess and I saw each other for a total of 1 hour in between passing's each week. I would come home, exhausted physically and emotionally yet have to pretend and utilize every moment with the other kids while I was home. I had 8 loads of laundry, vacuuming, dusting, bathrooms, dishes, yard work, etc all waiting for me to do as well each weekend. I don't know what was harder, coming home or being at the hospital. Thank goodness the ward had brought in meals. That was the Best blessing to not have to cook!

Each night I would try to hurry and go to sleep before my thoughts took over. Unfortunately many nights I was stuck with my thoughts and couldn't stop crying. The pain of feeling like my Heavenly Father had forsaken me was like no other. I didn't understand why once again, I was doing all things asked of me and trying to do all things right, yet being punished so cruelly. I didn't/couldn't pray for 3 days after being admitted. I was so angry, yet I needed His comfort and reassurity so badly. I wanted Him to tell me He was there, yet I felt so mad if He were to tell me He was there, since all I wanted Him to do is fix it! When I finally did let myself pray, the first thing that popped in my mind was the song, "Be what I Believe". The girls and I listen to this song over and over so I know the words well.

The chorus says, "I'll have faith like brother Joseph and the strength of the pioneers.
I'll be brave as a strippling warrior and like Nephi persevere.
I will spread God's love to all I know and serve.
I will plead with my Father on my knees: I will be what I believe."

This song gave me strength. It helped me push on. Another thought that entered my mind was a paragraph from my patriachal blessing. It says, "The trials and tribulations that befall mankind, and the sicknesses thereof, shall all work together for your good and gain." I had read that paragraph probably a million times throughout my life. I never knew what "Sicknesses thereof" meant until now. This gave me so much comfort to know that Heavenly Father was aware of me. He has not forsaken me. He has a plan for me! I received this blessing when I was 17 years old. 6 years before Ali was even born. Years ago when we first got our inital diagnosis, the first thought that poped into my mind was that Ali knew her what her trials would be before she came to Earth and accepted them gladly. Obviously, I knew of them as well. I wish I could have a crystal ball or see the whole picture of life, but I can't. Instead, I must have faith. I must be brave and endure. However, most days, this feels like the impossible.

After a month of the induction phase, we were sent home. The whole ward, friends and family, people from all over the country fasted and prayed that Ali would go into remission and not need a bone marrow transplant. It was amazing. I am overwhelmed with how much love and support our family has. Everyone loves Ali. To know her, is to love her. Unfortunately, after 2 weeks of waiting, we found out that Ali did not go into remission. She will need a transplant. This news has been such a blow. I had been in such denial and had so much hope that she would be fine and just need the 2 years of chemo treatment. I'm anticipating this to be such a hard hard road that I can barely breathe thinking about it. She will need intense chemo to get her in remission before she can even have the transplant. The same chemo that she is allergic to! There have been many who have struggled getting into remission. This is our first battle. Then if we reach this victory, we go for transplant which has it's own set of horrible fears. Graft Vs. Host disease is awful. It is were your body tries to attack the foreign transplant. Then if you finally have that conquered, you have to worry about any sort of complications. The oncologist was very clear that sometimes people say to him, "Well, we got rid of the cancer, but this is almost worse". Oh, did I mention the worst part? You only have a 50% survival rate. That is literally a flip of a coin.

To say I am not emotionally well is an understatement. I feel so emotionally drained and depressed. I feel guilty because I have 5 other kids counting on me. I am trying my best to give anything I have left to them. To cherish them and have them know I am here. I'm trying my best to not let it show that all I do is think about my daughter and what she faces ahead. To be in the moment is pretty hard but I am trying. My poor husband holds a lot in. He sees me crumble and does his best to be there for me even though he is crumbling as well.

I am hoping that if we do take one day at a time, we will finally look back and say that we made it! Until then, I pray to be like Ali. She is happy and good through and through. I pray for strength and comfort to endure each day and enjoy each blessing and happy moment.

One year down!!

In a few weeks, it will be the one year mark of when Ali was first diagnosed. One whole year has past!! On one hand it feels like everything has gone by in a blink of an eye, and on the other hand, it seems like this cancer has been never ending. I'm not sure why all my emotions are so intense this month. I feel like I have had a good grip on everything but this month seems to be overwhelming. I've heard that these emotions come in waves and I guess that is true. Whenever I read about other children that we know who have cancer who are not doing well, it puts everything into reality for me. Ali is so happy go lucky that it seems as though I forget she is even sick at times. Then moments happen where she wakes up puking all over herself or moments when I have to hold her down because she kicks and screams as the nurses access her port. Moments where she has an unexplained rash or a fever and your heart sinks wondering if you will soon be driving to Salt Lake City to be admitted to the hospital. Those moments pull me back and smack me in the face with reality. Those moments are moments I want to just deny.

Before all of this I knew very little about the cancer world. In the beginning, it felt like I was just in a horrible nightmare just waiting to wake up. They hospitalized Ali for the initial treatment which took about 10 days. During those 10 days it seemed as though we met a different doctor every couple of hours. They have a huge team at Primary Children's so I understand now why we were meeting everyone but it was overwhelming at the time. They all speak to you as if you understand medical terminology. Before all of this, I graduated medical assisting school and had studied medical terms so I was trying my hardest to search my brain as fast as I could for some sort of connection in understanding what these doctors were talking about. They gave us a huge binder that had information about leukemia, chemotherapy, side effects and so on. At the time I could only handle reading a few pages before my brain shut down and I was back into the numb state of denial. I had the nurses write everything I needed to do for Ali down so I could just go down the list each day until it became habit. She would enter a new phase of treatment every two months and a new routine would have to be established each time. The months passed and cancer became a way of life.

The beginning of January came and we had finally reached what the doctors call the maintenance phase. They call it that because for the next year and a half of treatment, most all the chemo is given at home and a lot of the medications all stay the same. We have been looking forward to this phase! We were told that Ali would start feeling more like herself and that she could finally participate in activities with other kids her age. The type of chemo she is getting would not make her hair fall out anymore so her hair is now starting to grow in! All things positive, right?? So why am I so emotional?? As we have entered into maintenance, Ali has had more problems than I had expected. She gets more nauseous than she ever has been. She has developed neuropathy in her legs (one of the side effects from having chemo) making it unbearable for her to walk at times. This last blood draw, her results came back with high results on her liver function. They are suppose to be around 10-25 for normal results and they are coming in at 450! What does that mean?? As far as I understand, her liver is having trouble processing the chemo. They are going to stop chemo for a few days and then retest hoping that her lab results will look better in a week.

As this year has gone by I feel more educated about cancer but I still feel like I don't know enough. I get frustrated that I can't read or understand everything on the lab test results and that I have to wait for doctors to explain them to me. I get frustrated in the unknown. I guess I would rather worry about nothing than get hit with something and not be prepared for it.

The other night I opened the big binder that we got in the beginning when we were in the hospital. As I opened it I started searching the side effects. Immediately I started feeling shaky and could barely get through it. For some reason I had told myself when she was diagnosed that the next 2 1/2 years would probably be really hard, but if I could get through that, she would be healthy and there would be smooth sailing. When I hear of abnormal liver function results and I add medicine to her list for neuropathy, I am hit in the face with reality. I do not know if she will be ok. I do not know what kind of damage this chemo that is so essential to her now will do to her later. I do not know what will happen!

I guess all I can do is have faith. Have faith that things will be ok. Have faith and hold on to what I do know. I know that God has a plan for us all. I know that we all have chosen to come to this Earth, to live our life and become the best people we can be. I know that there is a Savior who loves us and will help us through anything in our lives. I know that He will comfort us and share our burdens. I am grateful for my trials because they help bring me closer to Him. I know He knows me and will help our whole family get through this! I am amazed at Ali and how well she handles life. She never questions anything or ever has a bad thought. She is amazing! I am so proud of her and the person she is. She is so strong and loving. I love that she will give you a hug even if she doesn't know you. She is so kind. I am so grateful to know her and to be able to be her mom!

One positive thing that has happened is that she has been asked to be the Girl of the Year for the Leukemia Lymphoma Society. This means that her story and picture will be shared by many in hopes of raising money to find a cure! She is so excited to be a part of it and to help in some way. She is already thinking of ideas to raise money as well! Her plan is to have a hot chocolate stand and give the money she raises to LLS. How is she so sweet at just 5 years old?!?

My beautiful girl!!!

 

 

 

Being silly!

 

 

One of her favorite blankies!

 

 

 

 Ali and the Boy of the Year (I think she may have a crush on him!)

 

 

 

 

 Her cuddle buddy!

 

 

 

Her hair is growing!!!

 

 

 



Becoming a blended family!

Over two years have passed since Jess and I got married. I was thinking about how my life has changed and the things we have all gone through. This post is mainly about my story in becoming blended!

Before I met Jess I was a single mom of 3 working days and going to school at night. I owned my own home and felt that I had done a pretty good job taking care of myself and my 3 babies. However, I felt lonely and incomplete. I longed for my family to be "whole". For my children to have a father and for me to have a husband to share the responsibilities and joys of life with. Even though I had many people around me at church and work, I didn't have very many friends because I was put in the category of "single mom". I was 25 years old...too young to hang out with some and too old to hang out with others. I was too busy to get together for play dates and I didn't have a significant other to get together for couples night. I struggled with finding boyfriends who just weren't right for me. Being 25 is young enough to date and explore relationships but not when you have 3 kids who look up to you, watching everything you do as you strive to do right by them.

I remember just praying with all my heart a Good man would come into my life. Jess was an answer to my prayers!! We were so in love and caught up in the fact that we finally had found each other that the reality of what would soon be our lives hadn't really sunk in...at least for me!

I sold my house and moved all of my things to Jess' home in Brigham City, Utah!! Brigham City...! A small little town is a huge change from a big city! It was a huge adjustment at first...having no store other than Walmart and only 3 restaurants to choose from. Oh how I love it now and am grateful to call it home! It was hard at first though. Jess started with a company that kept him until super late at night making this new blended family fall mainly on my shoulders. Being a working single mom, my mother had helped me a ton with my 3 kids so I hadn't really realized what it would be like taking on 6!

Jess' home was very nice for him and his 3 boys, but adding a wife and 3 more kids made it feel like we lived on top of each other. We converted the basement family room into our master bedroom and for a while, we had no door to our room!! Oh how grateful I am for doors! You don't realize the beauty in things until you don't have it! Even with a door however, you could hear the daily screams, whines and arguments of the boys as their rooms were right next to ours. When they would wake up, the floor would pound as they raced up the stairs...never a chance to sleep past 6:30am for us!

Our sweet, beautiful, squishy house (=

 

 

 

All the children had their little quirks...Little Ali was only 2 and was still being potty trained.... Clark was still wetting the bed at night.... Aj, although was 5, would rub his poop on the bathroom floor and walls.... Ryan who was 8, would poop his pants and hide the poop under my bed.... Lets just say, I have dealt with poop way more than I'd ever like to in a lifetime!

Meals were a chore because I felt as though I would spend forever cooking, then in seconds everyone would eat. I would spend forever on dishes and then it would be time to cook for the next meal...and repeat! I learned quick on that one. We now eat off paper plates and the children take turns doing the dishes!

We bought a bigger table as well!

School is still a never ending chore. When we were first married, I would take the 3 oldest to school, then have the 3 youngest at home for a couple hours, then take Aj to afternoon kindergarten, then 2 hours later pick all of them up! Two hour intervals in between pick up and drop off does not give you much time to get anything done. Because we lived so close to the elementary school, I would sometimes give myself 15 minutes more of peace and quiet and allow them to walk home instead of me picking them up. This however was not always a good decision since I was informed by one of my dear neighbors that on the way home, my boys would stop in front of her house and pee on her trees in front of her home!! Oh the stories I could tell!! lol

Bedtime is a reward for me! We say prayers and put the kids to bed at 8...they usually are asleep by 9 and I have about 2 hours to myself before I fall asleep and start the day all over! Two years later I feel that I have a slight grip on parenting 6 kids. We have moved into a bigger home and the kids and I have gotten into the swing of a schedule. All 8 of us come from a past. We have all had to deal with things that people should never have to deal with and those things have left scars that we are all trying to work through. Unfortunately the "baggage" in our life still causes a lot of problems and life is not always easy. At the end of the day, I am so grateful for my family! I am so grateful that I am blessed to be a stay at home mom. When I would go to work, I felt like I was missing out on so much with my kids! I love that I can be there for them now! I am grateful that I have a husband that I can share my woes with, who I can laugh and cry at life with. When I look back on my life, I can see that the Lord does knows me and does everything in His timing. I can only imagine how hard it would be to be dealing with leukemia with Ali by myself. It was only 6 months after our year anniversary that she was diagnosed. Life has definitely thrown us a lot these last 2 years but I am so grateful for the good that has come from it.

8 little blessings!

I love my beautiful children!

Along we chug...

This last month, Ali has been great! Despite counts being low and having to have a blood transfusion last week, her health has remained firm! She has had normal amounts of energy and spunk! She has developed what they call "chemo skin" around her ears, neck and head. At first I had thought it was dirt behind her ears and I was scrubbing and scrubbing to get it off!! When I took her into see her oncologist, they told me it is not dirt, it is chemo skin! I guess the chemo seaps through her skin as she sweats and changes her skin color. They said it's normal and will start to wear off when she is done w treatment. So weird! All these new things I am finding out happen that I had no clue about!

You can kind of see her chemo skin behind her ear

I thought that losing her hair this last month would really effect her, but it hasn't! Before she lost it, she was pretty determined to keep it even when it was really thin and was starting to look bad. When she was ready to shave it, she told me, "ok mom...I'm ready now." That was probably one of the hardest moments for me. Even though her hair had been falling out gradually the last 7 months, seeing your daughter's head get shaved is one of the most heart wrenching experiences!! The doctor's told us that when it does finally grow back, it may be a different color or texture. Ali has it in her head that she would like to have white hair when it grows back! She has a tiny little bit of peach fuzz right now and when anyone points it out she gasps excitedly and says, "is it white?!?" haha...let's cross our fingers on that one!!

Monday we celebrated her 5th birthday!!! We had a party for her this last Saturday where all her family and friends came to wish her well! It was lots of fun despite the weather! I had planned a bounce house for the kids but a few hours before the party, a storm decided to roll in! We had to bring the party inside. It all worked out fine though!

 Ali had a doctor appointment where she received a blood transfusion and chemo a few days before her birthday. She loves going to her appointments and seeing all her nurses. She decided she wanted to celebrate with them as well so we brought a cake in and everyone sang her happy birthday. It made her day!!

 Ali opening her presents with her siblings first thing in the morning! One of the things I love most about my kids is how loving they are! They all made Ali their own card. Some attached a dollar to it, others taped a pokemon card to it or other small gifts that mean a lot to them and some colored beautiful pictures! I love the thought and love they put in to make others feel special.

I still can't believe my youngest baby is 5!! I remember finding out I was pregnant with her. It was one of the hardest times in my life that I was going through and all of a sudden, this little baby girl decides to make her appearance! Do you ever think that angels come down to help you in your life? I do...her name is Ali! She has been my strength and my happiness...my smile throughout my day!

My little angel!!

Ever since she was diagnosed, I have been trying to make sense of everything. A lot of people would think, why me? Why my little girl?? When she was diagnosed, a part of me understood. I would NEVER wish cancer on anyone or wish anyone to have to go through this pain...but a small part of me understands this trial. I believe that this life was given to us so that we may be tested so that we may become better people. To me, Ali is perfect...she doesn't need to be tested because she already has a million A+'s!! Even though it is Ali's body that has to endure this trial, I feel that this trial was given to me...to test me, to teach me...to help me become better. I remember when the doctor's came in and told us she had leukemia. It was 5am...we had been in the hospital room for what seemed like forever. My eyes were burning from all the tears I had cried. My body was aching from exhaustion. However, through all the tears and pain, I could feel my Heavenly Father telling me that everything would be ok! It was one of the strongest times where I truly felt like heavenly angels were surrounding me and helping me through those moments. I am grateful for that feeling because it truly has helped me when I'm feeling defeated.

Today Ali's nurse comes to draw her blood and check her counts. As long as her counts are high enough, we will head down to primarys hospital by 8 am for more chemo and also a lumbar puncture. Those days are not fun. They are long and Ali has to fast before she gets put under. I hate seeing her get put under. I don't think I will ever get use to it. So along we chug...I am grateful for good days, my many blessings and all the love and support that is shown to my family!

Once Reality Sunk In...

It has been about 7 months since we were diagnosed. It's crazy to me to think how little time 7 months sounds because in my world, it seems like a lifetime! I guess it is because it is a merry-go-round that you can't get off of (and not a fun one)...just going round and round, your life constantly consumed with worry.

After diagnosis we spent 2 weeks in the hospital in the ICS unit of Primary Children's. Before they released us, they gave us a small tour of the unit and of where we would be receiving her treatment. I remember as we walked down the hall, I felt as though I was being "sentenced" to a road I did not want to go down! The clinic is cold and gave me a chill that I'll never forget. They took us down the hall of the clinic to get to the infusion chairs. As I saw all the little bald heads and all the kids with tubes hooked up to them my heart just pounded. How could this happen? My little girl would now be going through this! That is when reality really started to sink in. This was now my life and there was nothing I could do about it! 

Since then we have had chemo treatments at least once a week at primary's. When the kids were in school it was a lot easier to juggle appointments. I would drop the 5 other kids off at school and then drive Ali straight to her appointment (a hour and 20 minute drive). We would spend mostly all day there and if I was lucky, I would be able to drive home just in time to pick the kids up from school and start the joys of homework, activities, chores, etc with the other kids. Once summer hit it was a whole different ball game. I had all 6 kids home with me all day everyday. At that phase of treatment, we would have to stay at primary's hospital for 4 days at a time, staying there overnight. We were very blessed to have Jess' work be so flexible in letting him take time off to help take care of the kids, but it was also a huge financial burden since no work meant no pay! Luckily we made it through. Now, school is in session again so I am back to the routine of dropping the kids off before her appointments.

Ali's attitude has remained so positive through this whole life change! She absolutely loves her nurses! She refers to them as her friends! She looks forward to seeing them and giving them all hugs. She definitely screams and cries through all her pokes and procedures but after she calms down, she is off to playing again! One of the things I am most proud of her about is how compassionate she is towards others. When we are at her appointments she sees other children there crying. She goes up to their parents and asks their parents if it would be ok for her to give them a hug! She just amazes me!!

I wish I could say I was as strong as Ali! I wish I could say that I took life as she does! I do try every day to be a good example but some days, it seems as though I do feel I'm on overload. You would think it would be enough to just have cancer as your trial...that we have enough on our plate, but that is just not reality. Life still goes on...there are still 6 kids to raise, hoping and praying you are doing your best to rear them, tending to your spouse, blended family adjustments, ex-spouse problems (bleh! an unnecessary and frustrating trial this one is might I add), financial worry, grocery shopping, house work and laundry, laundry, laundry!

On a positive note, we have been so very blessed amidst all our trials. I am very lucky to have such a supportive husband. He has been there every second when Ali has had even one tear. I am so very blessed to have all of my family and friends in my life! We have met so many amazing people. So many other strong families going through the same thing as us. I guess the biggest thing I would take from all of this is to really count your blessings. I have learned to appreciate things so much more and try to be thankful in all I do.

 

My Silly Girl! Taking selfies of herself...she thinks she is hilarious!

 

 

Silly girl again as she proudly shows off a project she made!

 

 

The day we donated Ali's hair. She was very happy to know she was giving it to another little girl who needed it!

 

 

My beautiful family!!!

 

 

 

The diagnosis

 

 

 

 

 

 

After a lot of thought, I have decided to start a blog about everything we have gone through with Ali. I think it will help to write things down and get my feelings out in some way. Where do I start?? I have never blogged before so I guess I'll start from the beginning.                   

 

 

 

 

 

 

 

 

Late January, Ali had gotten really sick with a really bad cold/flu. The doctors told us she had croup. It was a nasty bug that lasted about 2 weeks. Then Ali got better. She started eating again and playing like her old self. Then about a week later, she started showing symptoms of being sick again. This time, she would sleep all throughout the day.

I thought that she would sleep because she was trying to get out of cleaning her room!!

 

 

 

She complained of leg pain and was very pale with dark circles under her eyes. My husband and I thought she caught another strand of the flu! We brushed off her leg pain as body aches from flu like symptoms.

Ali's dance teacher had said that Ali did not want to dance because her leg was hurting. I remember scolding Ali after dance practice telling her that I wasn't going to pay for her to do dance if she was just going to sit in the corner! Now looking back I feel just awful.

 

I told my mom about Ali not being well. Later that day, my mom called me and told me she had a really strong feeling that I needed to call the doctor and get Ali's blood work done. She told me not to brush it off...I needed to take her in. After the conversation with my mom, I called the doctor and made an appointment for Ali for the following week. A day or so later, Ali complained of severe leg pain. She refused to walk! It was so bad that we called the doctor back and explained her symptoms. He told us to go to Brigham City ER to have her examined. There, the doctors thought she may have a hip infection. That thought was so scary. From what I researched as I waited, hip infections could put you in the hospital for 2 weeks! They took her in for xrays and then took her blood. When the blood tests came back, they told us they thought she may have leukemia. My heart sunk. I looked at my daughter, then sleeping with her teddy bear in her arms, and just broke down. Within the hour, Ali was taken to Primary Children's Hospital in Salt Lake City where they did more blood work and confirmed her diagnosis of high risk b-cell ALL (Acute lymphoblastic leukemia).

These pictures are at the Brigham City ER awaiting her blood results. Looking at these pictures, you can see the dark circles under her eyes. She looks so pale and sick. It still haunts me that it took me so long to see it.