Wednesday, January 26, 2011

Where to start...

Its been almost 3 weeks since I posted last and Im not sure where to start...

Last month was rough. More on me than on you. You were sleeping terribly up until a week and a half ago and so was your brother. I was up almost hourly...every 2 hours if I was lucky. I was so tired and it made it hard to get through the day. Its emotionally and physically exhausting to watch you struggle and not know how to help, and then add on that I am exhausted too, and it made for some very difficult nights. I would get down on my knees and pray that I would know how to help  you relax and that Id be able to make it through the night and then the next day....thank heaven for prayer. I always felt the peace and comfort that "this too shall pass." A peace that can only come through the spirit.

I believe that everything happens for a reason, and that the trials we face come to help us learn things we could not learn any other way. Sometimes I think that I am the reason you got cancer. I know that there are a lot of things that I have learned through this experience about myself, and about my Savior, and about a lot of other things that I dont think I could have learned any other way. I am so grateful for the outpouring of blessings that I (and our whole family) have received because of this horrible disease. I just wish I could have been the one to deal with it. I would gladly have taken that burden from you. You have handled it with such grace and acceptance that I am amazed. You are such a special kid. I just hope you know how much you have blessed the lives of everyone around you. I love you Wee Mee.

Maintenance has been a lot different than I expected....I dont really know what I expected, but its different than I thought. You are doing well. I LOVE (and so do you) not having to go to clinic weekly. Its so nice, but its hard to believe you've had  3 treatments in Maintenance already! Only 23 to go! Taking meds at home has become part of our daily routine and seems normal. Last Thursday you took 10 pills. Yikes. 4 were a steroid, 1 was 6mp (a chemo), and 5 were Methotrexate (another chemo). You did awesome.

The big round one is 6mp, the 5 yellow oval ones are
Methotrexate, and the 4 small round ones are steroids.

You had clinic last Thursday too. They had us in and out really quick and I am so grateful to that hospital! They try so hard to make you as comfortable as possible and you LOVE that they can access you and draw blood, and do chemo WITHOUT a window sticker. You hate those things. We are so blessed to have them be so close, and its comforting to know I can call anytime with questions or concerns and they are always there to help.
YAY! No window sticker today!
You wanted a pic by the horse cause he had antlers on,
and a clown wig. This horse kind of freaks me out.
So glad to be home!

The visit was pretty routine just a couple of things to report:

1. They upped your Septra dose (a preventative antibiotic you take every Mon and Tues throughout treatment) from 5mL to 7mL, because you are growing.

2. Your ANC count was 2300. They like it to be closer to 1000 so the doc said it could be up because your body is fighting a virus (you have a bit of a cold), or it could be up because your body is adjusting to the chemo and its time to up your dose. Doc Fluchel said if they are up still at your next clinic appointment then they will rule out the virus and up your chemo. 

3. Dad and I were worried about your clinic visit in May because you are scheduled for a back poke and chemo just 2 days before our DisneyWorld trip. We were concerned because clinic chemo, and backpokes are especially hard on your legs, and we didnt want you to feel miserable on our trip. I asked Doc Fluchel if we could do it when we got back from our trip and he said, "no problem!" Woo Hoo! He said Maintenance is a lot more flexible and he felt totally comfortable with that. We will just have to take your normal oral chemos you take at home with us, and keep up on those. Im so relieved. This will be a much needed trip for our family. We will actually be gone on your 1 year diagnosis anniversary. What a place to celebrate kicking cancers butt!

On a happier note, you and your sisters have restarted your extra curricular activities. Alyssa is taking Power Tumbling, Carly is in dance, you are taking tumbling again, and Tucker is just working on being awesome (a job he does well). You are all excited to be back doing things you love and I am happy to be the chaffeur again.

You are taking tumbling at Head Over Heels and you LOVE it. Sometimes you call it dance, sometimes tumbling, and sometimes "gin"nastics. The funny thing is whatever I call it is wrong.... I think you just like  to correct me. You've been twice now, and ask me daily if today is tumbling day.

The first time you went was kind of hard to watch. I had to fight back tears a bit because of how weak you were. It was a very obvious reminder of how much all these chemo treatments have taken from you. The biggest difference is your little legs. The steroid causes the muscles in your legs and bummy to atrophy and disappear, and the Vincristine (the chemo you get every 4 weeks at clinic) causes muscles weakness all over, but particularly your legs. I can tell just by looking at you that you have lost a lot of muscle over the last 8 months (has it only been 8 months...feels like longer). Your cute bubble butt is gone, and we cant hardly get your pants to stay up, and  your legs are a lot more scrawny.  I knew all that, but  to physically see all the strength you lost was heartbreaking. You used to be able to do back bends no problem, not anymore. You used to do all kinds of tricks on the tramp, now you have a hard time keeping your legs underneath you. The hardest one to watch was when everyone was hopping on one foot. You tried so hard, but just couldnt do it more than once. You were so exhausted but you were still trying so hard. I was so proud of you. It made me want to cry. I love your teacher, Coach Whitney. She is really good with  you. She pushes you just enough. She always encourages you to try and then will help you if you struggle. When you were all supposed to hop on one foot to the water fountain you tried and kept falling, so she just held your hand and helped you keep your balance while you hopped. You still struggled, but I was so proud of you for not quitting, and glad your teacher encouraged you to stick with it too. I think the class is going to do wonders for your strength and for your self esteem. It will be good for you to see how much you can improve with hard work.

Sissies were off from school last Mon and Tues. so we wanted to have a fun day. You and your sisters all wanted to go to Temple Square. Im so glad I have such sweet kids. You wanted to be outside because the sun was out that day and the temps were a scorching 40 something. So we bundled up and drove down. On the way I went up past the Capital Building because you guys love to look at it. You were all saying (with heavy sighs) how you wished we could go in. I told you we could go in it whenever we wanted...never had I seen such excited kids! (what the?) So we stopped and parked amid giggles and squeels of excitement. You guys were amazed and kept saying how if you you lived in a place like the capital you would play Cinderella as you scrubbed the floors. What an imagination you all have. You learned a little about how the government works as we took pics in some of the rooms...it was fun to see you so excited about something so simple.
The House of Representatives room.
I wouldnt want to scrub this place ever...even if I was
pretending to be Cinderella. I had fun embarrassing you
and your sisters by singing the song Cinderella sings
while she scrubs the floors...:)

Next we headed to Temple Square where we spent quite a while enjoying the South Visitors Center. You guys loved all the touch screen computers. (I kept thinking how many germs must be on those screens and whipped out the "hanitizer") They have a really cool model of the temple that showed what the inside looks like. You and your sisters were funny to listen to as you speculated on how they made it, and how fun it would be to be tiny and walk around in it. I told you its a lot cooler to go in the "real" temple life size, and even MORE beautiful.

I LOVE these kids! What would I do without you all??

These trees were so cool looking...all snarly.
Then we headed over to the North Visitors Center and went to see the Christus. We were snapping some pics in front of the statue when a couple of sister missionaries stopped and took a picture of all of us together. The missionaries were cute and you and your sisters were mesmerised by their accents. (one was from Australia, and the other was from Pakistan) They asked us if we wanted to go back and see a movie about eternal families...we (of course) said yes! The movie was awesome. Very moving. We are so blessed to be members of this gospel! I dont think I, or you, could have made it through our trials this last year without it. I am so grateful to know we are an eternal family. I was also grateful for those 2 sister missionaries who were inspired to share that movie with us and I am grateful that all my girls got a chance to hear them bare their testimony of the truthfulness of the gospel. Its good for you to hear it from someone other than me.

So glad we live so close to this beautiful place,
and can visit as often as we like! There wasnt hardly anyone
there so we had the place mostly to ourselves.
Overall you are doing really well. You are happy and busy and seem more like yourself each day. You are still very easily tired and need a nap everyday, but Id be tired too if I was taking chemo everyday! We have been truly blessed that you have done so well. Things could have been a lot worse. As I meet more and more families with cancer kids I am reminded of how well your amazing little body has dealt with the treatment of this devastating disease, and how quickly you have bounced back.

"But Im not tired mommy..." 2 seconds later you look like this.
You just finished your steroid series for the month and have a definite increase in appetite. You have been a little extra emotional too, but its hard to know if its just because you are hungry and tired. I have noticed that you have been extra sweet lately too. You are always telling me how much you love me, and giving me hugs and saying your please and thank you's. You say the cutest things. I wish you could stay this age forever.
Dress ups and a tea party with Ry.

4 comments:

  1. I can't believe how big Tucker has gotten!! He is so cute! We went to Disneyworld at Christmas (The week before) The girls loved it!! You guys will have so much fun and a much needed vaca! Hey no tears today ;) Love the part about the capitol, who knew it could be so cool :)

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  2. Hope you don't mind me commenting on your blog. I'm Ali's aunt and gave chemo to kids for many years. They were always my favorite patients, probably because we got to know them best of all the kids on the pediatric floor. Thanks for sharing your journey and your testimony. She sounds like a wonderful girl in a wonderful family!
    Lisa

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  3. what a sweet post, lea!

    you know, i have had the exact same thought (that i'm the reason elena has cancer) - i understand that feeling. before elena was diagnosed, i was feeling a lot of discontent/disgust with myself and praying really hard to become the type of women/mom i needed to become. we were already going through a difficult medical time with our newborn and i thought i couldn't handle anything else and then elena was diagnosed. i thought i was at the end of my rope already and so i KNEW that elena's trial came with a purpose. anyways... kind of rambling, but i just wanted to say that i understand that feeling/thought. :)

    i hope mckall keeps getting stronger and better. i'm no doctor, but it seems like the tumbling class has got to be good for the muscle atrophy - maybe counterbalance it? at least it's got to be better than being stuck at home with a low ANC!

    hey, and elena calls it "hanitizer", too. :) and sometimes, "soapitizer". :)

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  4. I just found your blog. As a fellow cancer survivor, my thoughts and prayers are with you.
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