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.