Tuesday, April 17, 2012

Before and After- Maintenance

I have to say (I know I have said it 100 times). We have the best families and I don't know what we would do without them. Scott's parents always come when we are gone and catch up on laundry/yardwork and keep Slade while we are traveling to SLC (I never get pics cause they are always doing nice things for us when we are gone). My mom (and dad when he is off) keep the kids while I work. It makes it SO much easier to leave them for a day (or half day) when I know they are loved. And sometimes it is a break for me. Oh and our sisters/brothers entertain both kids when I need it most. Being with cousins lately has made all the difference in the world. "Families are forever" has never meant more to us. Family is everything.

Honestly, we have been enjoying good quality family time with the 4 of us. I have loved it. I have LOVED that Taleah has been her normal self. Attitude and all. They have played so well together and I wish I could record them all day.
Oh and her hair is growing so fast. Our little fuzz ball is too cute. I keep mentioning that people that haven't seen her in some time will comment on her hair. She asks, "Oh my, is my hair going to be long tomorrow?" Too bad she doesn't grasp the fact that it will take YEARS!
Having the real Taleah has been more than great. I can't even explain. I was dreading... but anxious and ready to start maintenance.
Movie nights are the best. Relaxing, eating popcorn and watching a movie (well kind of). They usually last 30 minutes. Better than nothing.
Scott was excited to go to clinic with us again. Second time ever. It was a special one for so many reasons. We got to start maintenance (the last phase of treatment-18 months), Daphne's birthday part at clinic and dady got to come. The drive up was pretty good. We stopped at Cheesecake Factory and it went a lot smoother than last time. Oh and she was loving Scott (which she hasn't been attatched to him for a while.. she tends to want me when she doesn't feel well). It was the cutest thing and they both enjoyed each others company.

We stopped to see City Creek and walk around. We decided to walk towards the temple and say a special prayer about maintenance and the study we are on.
We didn't stay at Treena's because they were out of town. Some friends of ours have some hook ups in SLC with hotels... needless to say.. their mother was more than generous and we ended up with a room at the Grand America. Oh my! It was the nicest hotel we have stayed at. Taleah thought it was the greatest thing ever and made up for not staying at Treena's. Thank you Sines!

Daphne's birthday was great leverage for good behavior. Taleah really looks up to her. She is a pretty great girl...along with her parents.They had cupcakes (pretend) because they had lumbar punctures (which required fasting). At one point, Taleah, Daph and Millie were sitting at the table pretending to eat cupcakes because all 3 of them had LPs. Sad and funny all at the same time. Mostly sad though.
She was extremely brave this time. She sat by herself to get accessed, sat in her own chair while Dr. Barnette evaluated her and even took pictures with him.I know the sedation is her least favorite part and that is the only time she goes to PCMC. I may have been equally as anxious waiting for the news. Dr. Barnette sat down and explained the study to us and the 4 arms. I kept thinking... just tell us what arm we are randomized to. He handed us the packet/consent and we asked him if our answer was in the packet. He then said, " You have to decide if you are comfortable with any of the arms and then we will enter that into the computer and then the arm which Taleah will be doing will pop it. Like flipping a coin." We couldn't believe it. Ahh! We ended up deciding to agree, hear our answer and then we can always decide to go back to the standard treatment.
Waiting for the news was torture. It only took 7 minutes, but 7 really long minutes.
They came out and said, "Arm C."
Basically...the daily chemo pill, LP every 3 months, methotrexate pills every Thursday and septra pills every mon & tue will be the same as standard treatment. Our "difference" is the dexamethasone (steroids) and Vincristine will be every 12 weeks instead of the normal (every 4 weeks). The daily chemo pill (6 MP) and methotrexate will be adjusted accordingly to keep her ANC within 700-1500. This means that is supressing her bone marrow enough to keep the cancer from coming back. (All part of the process of resetting the bone marrow. ) To me, this is a huge part of the treatment. I know the Vinc and Dexa are important too and that's why it is hard to know if a little less will make a difference. The major upside is the fact that she will most likely have less long term side effects from this arm (liver damage, kidney failure, kidney stones, foot drop and many more).
Obviously, there is so much more that goes into this type of decision. I have talked to other parents that are a part of the study. One family in particular is currently on the same arm. Their dad is in pharmacy school and has done extensive research.... and listening to their explanation was very enlightening and made me feel much better/grateful for this arm. I also heard that PCMC usually starts studies a few years after other hospitals are trying them out. They would obviously stop this arm of the study if they were seeing significant differences from the others. Then, I think that more chemo has to be better. BUT, seeing how some of the other kids have handled and dealt... I am not entirely convinced that it would be best for Taleah. I will continue to research and write down all of our questions and call to chat with Barnette. We will continue to pray and we hope to finalize our decision in the next few weeks. Technically, we have about 3 weeks to decide. It's so complicated and overwhelming. It doesn't seem like a decision like this should be left to a parent. :)
The drive home was better this time. No throwing up. Just the usual headache and wanting to get out of the car. We tried just about everything to keep her entertained.
Luckily, she has been pretty good. The steroids are beginning to take affect. Oh how I have NOT missed these. However, the last time we had them she was really sick too. This week will just be the angry, psycho child. It is 5 day pulses, but with our study it will be every 3 months. I was reminded today while at Target how much steroids suck. She was not acting like my child and making a huge scene over candy. I got plenty of looks and I wanted to scream... she has cancer and is on steroids. Well, they probably figured she had cancer due to the hair (lack of) but no one really understands steroids. I don't even think people that we are friends with really understand. Our families do and close friends... they have experienced her first hand. Just keep telling us it is the drug... not her.
Distractions will be my friend this week. In order to make it through... I'll do anything to survive. Being outside seems to help so that is what we did tonight.
Amongst everything, we are so grateful. She is here and has done pretty dang well. Steroids and all.. we will take it.
I was wanting to feel so good and victorious because we are finally here. Maintenance!!! BUT traveling is stressful, I hate the LPs and after math of it all, we started steroids and now the decision of this study. Oh and SO many pills (which we are told will become a way of life). I know it will be great and she can continue a somewhat normal life. Patience. We can do this.
A mock homecoming has been in the works for some time. We have been waiting for counts and a feeling good Taleah. It is scheduled for this Saturday. And I mean a full on date that she has planned out. Day date at the park (with a group of highschoolers that she has picked), dress up for the dance, dinner at Grammys (table decorated), dance (music and all) and ice cream after. Yep, all her ideas. Ty is so sweet to take her. Tonight, she was finally asked. She was thrilled.
It's seems crazy that she is only 3. She honestly can't wait. My only concern are the dang steroids. PRAYING that they won't change her behavior too much and she can be herself. Her last dose is Friday night and won't be out of her system by Saturday. We will reschedule if we have to.
WOW. SO much. I obviously need to relax, calm down and process it all. Scott and I have a lot to think/pray about. Again, thank you to everyone for support and prayers. We feel it!


  1. What a sweet and special girl. Love that she planned out this Homecoming date. Cutest little thing.
    Sounds like you've done your research and you'll decide what's best. Prayers your way to help you feel at peace with your decision.

  2. You are all doing so well! I'm glad that you feel good about the arm she is on. She looks adorable with her fuzzy head :) Good luck with the steroids!

  3. Congrats on starting the next phase of treatment!

  4. glad you wrote all that down! I have been wondering about the study part.. and i agree thats totally a decision I would just want someone to make for me especially a doctor with far more knowledge! But i'm sure heavenly father will make that decision for you through comfort! Love you and the fam! And yay for maintenance!!