Much Needed Family Vacation- Disneyland

 

We have been looking forward to this getaway for quite some time. The Stevenson family had everything planned out and our attendance was dependent on Taleah's health. Her numbers were lower than normal at clinic so they told us to go off of oral chemo for the week to ensure her numbers wouldn't drop even lower. However, nothing in the cancer world is for sure. We prayed and prayed that she would be healthy as well as everyone else going (4 other children).

Luckily, everyone was healthy so we were able to go! Taleah was beyond excited. Slade was happy to be there with people he loved.

 The princesses were a hit. She was nevous at first, but instantly became drawn to them all.

Slade was a bit of a challenge but he did pretty well.

 

Taleah loved the rides and was pretty brave. She was 2" shy of 40" (which is the heighth for most rides). I heard that they won't make you take off your shoes so we attempted a princess dress with princess shoes (with heels). It was a success for 3 rides... one of the workers laughed/rolled her eyes at us. We didn't care!!!

 

Everyone was such a great help and my kids were in heaven with their cousins. They all got along really well! The rain wasn't a setback at all. We wore the ponchos and kept on.

 Disneyland is so much more fun with little kids. They thought everything was so great! I loved it.

 

The beach was also a success. The weather was perfect. She loved getting in the water. Slade did not, but he loved the sand. I couldn't help but think of the many blessings we had been blessed with.

The germs made me really nervous. We did our best to use continual hand sanitizer and wipe things down. Again, we prayed for the best. And it was the best.

Thanks Rob adn Sandee for a great vacation. We loved every minute of it.

Crazy Month- 2nd cycle of maintenance

It's nice to be able to say it has been a busy month without too many troubles. The kids are a handful but it is a lot of fun. It is still fairly warm so we have been able to do some things outside.

 

 

Once she started learning her letters she wanted to learn how to write all of the letters in her name. She contineus to practice but this was her first.

 

Family date nights are the best. She loves having her picture taken and she loves to be the photographer. It is so nice when we can spend an evening together without being rushed somewhere.

 

 

Our monthly visit to Dr. Marsden is always great. She loves seeing him and so does Slade. They are always fighting for his attention.

 

 

Gramps and Grandpa Stevenson are always a hit. For whatever reason... they are both adored by both kids! ;)

 

 

Lunch dates with friends are always fun. Taleah and Slade love being around other kids and playing in a group. I always worry about how this is affecting her socially and most of the time it seems to be fine.

 

Taleah did go to college and experience it to its fullest. She loved it and told me that she would be leaving for college on Friday. I'm pretty sure she would miss me!

 

 

There was one particular night that she wouldn't go to sleep. She loves to stall and postpone bed time. I knew this night was real when she told me she was afraid the ambulance was coming to get her. She had been having a few nightmares and I guess it was about ambulances. She was so scared and sad about what was to come. It freaked me out and I couldn't help but think it was a sign of what was to come. I tried to console her, but I was a little scared myself.

The cheer clinic was SO cute. She loved it and LOVED performing at the game. She wasn't shy at all and asked to do it again.

 

Had to do a comparison of the cheer clinics from last year and this year. What a difference and what a journey. That's one tough girl!

 

Our last time at the lake. Taleah could have spent all day there... Slade not so much. He didn't like being confined. The kid is crazy. It was great to be with family and enjoy some lake time for one last time this year.

 

 

The kids like to be doing things all the time. They seem "high maintenance".... always wanting me to entertain. Makes it difficult to get things done, but people keep telling me that these years go way too fast so I should really enjoy it.

 

The 50th wedding anniversary celebration. Such a fun weekend. Kanab and Brianhead and lots of family. Families are amazing and we feel really lucky to be surrounded by such a great one.

 

 

I knew I wanted some famliy picures taken while her hair is growing in so dang cute. I love the length right now and the adorable curls. People are constantly commenting on how smart I am to cut it short for the summer. Ha. I always nod and agree. The actual taking pictures was extremely hard due to Slade. Glad that we had some turn out though. Love this little family.

 

 

The Big Weekend...

The BYU game to watch Tavia. I was solo that night (without Scott and kids). It was different but so much fun!!!

 

 

The Cure Search walk was amazing!! I can't even explain to love and amazement I felt as I was there. These cancer kids are awesome. They are fighters and truly heros. We had lots of family come and it was great to feel loved.

 Dani Prince was awesome and let us combine teams. She is always supporting us and guiding us in the right direction.

They had all the cancer kids go on stage and say their names. It was very emotional to be on stage and witness the strength of all these kids. I was a mess.

 

 

The best part of going to PCMC is staying at Treenas. Taleah LOVES it. We had lots of playing, eating yummy food, and cheer class. She doesn't mind showing off and proving her strength.

 

We deicded to try an anxiety med this time to help her... well it knocked her out. She was with it enough but made a big difference. The sedation/procedure part went better than it usually does but I didn't like having her "out of it" the entire visit.

 

She is still doing well and moving right along. Her counts were not as high as I expected but they said that is normal.

ANC 600

Hct 36.3

Plts 234

 

I am glad she is progressing but one year away seems so far. I know she can do it because she rocks. I am really  nervous for flu season coming up and then winter. We can do our best to keep her healthy but I don't want to remover her from "life" again. Hoping she can wash hands and stay away from sick people... hoping that can be enough.

Bribery was visiting the train when she finished clinic. She did great so I had to take her. This was her only happy moment of the day.

She threw up on the way home and it was rough. This week of steroids has not been too bad, but it's not over yet. Coming off of them was the hardest last week.

We are still grateful for the love and support. We feel it.

Thank you!

One Year Down

 

Taleah hit her one year mark since diagnosis on the day we left Brian Head. I felt a wave of emotions and talked to Taleah about it. Honestly, I don't think she remembers much of that day. She said she can't really remember riding in the ambulance and I am hoping she already forgot the pain, stress and anxiety she felt that day. It has been a crazy ride and one LONG year of ups and downs. The picture below shows the day in the ambulance, embracing the bald and her cute hair now. What a year!

 

 

 

 

We were due for a blood draw on Sept 4. The week before made me nervous because she was complaining of a headache, acting whiny and asking me to hold her. After all, I was "watching her". I figured something wasn't quite right with her labs. I decided (after debate back and forth.. in my head) to take her to 400 E to have her blood drawn. Nurse Jeanette had a busy day and I asked her literally the night before. The floor was very accommodating and helped us a ton. I had no one to watch Slade so he came along. I was a little nervous for that part because Taleah usually requires my full attention at these visits. She was excited for nurse Jason, but he was in a meeting so we had nurse Justin (whom she had never met). Let's just say the anxiety set in... wow. She was SCREAMING and almost throwing up. I tried to talk to her and calm her down but she wouldn't listen. We finally got her port accessed and then she realized she was fine. The red juice (her blood) came out great and I was so relieved. The port was working. YAY! We waited around for the results... even though Jason said he thought her counts were fine. Mike and Mallory kept the kids busy and they had a great time. I am pretty sure my kids didn't want to leave. Results...

ANC 2000

Hct 35

PLts 137,000

WBW 3.3

 

So Jason was right. She was great. I was just paranoid the same thing would happen and it would be on a holiday weekend.

 

 

She couldn't wait to perform at the DHHS game. I can't even explain how excited she was. Last year (right after diagnosis) she performed on the field.. well she stood there with her steroid, mad face. She kept saying that this year she was going to dance and smile.

I was so proud of her. She danced, smiled and loved every minute. I got a little emotional and reflected on the last year. She is one tough girl. Love her little personality.

 

Now we can rest easy and hope to have an uneventful weekend. Thank you for her prayers. Oh and she did pray for her counts to be good and no rain so she could dance at the game. A girl with prioritites. <3

Weekend Break- 2nd cycle of maintenance

It was kind of nice to not worry about her port (well of course I was still worrying about the next time we would use it). PCMC called and told me to put her back on her full strength chemo pills. I was a little nervous because I thought they usually tapered back on, but they know best so that is what we did. I then started to get nervous because I didn't know if it would tank her counts and we would run into the same problem as before. They said to "watch her". Great.... one more thing to stress about and second guess myself.

In the meantime, we decided to head to Brian head for the weekend. We invited some friends along. We had some adventures along the way but made it and had a great time.

 

 yes, that is Taleah throwing a tantrum

 

 It was so nice to go and feel sort of normal. They had a great time playing outside and forgetting about the cancer world. It was a much needed break (not much of a break for mommy but still fun).

 

On our way home, we told Taleah that Trevy and Kate were coming to STG for Sunday dinner. She was so excited to see them and said she got to give the first hug.

 

Oh the joys of the cancer world. Constant stress, learning and patience. Still haven't mastered it. Hopefully getting there.