Tired

I know I have cute children. Some days I have to work harder at reminding myself of this. On the more challenging days I sometimes find myself wondering how I would react if I was observing them for the first time. It is then much easier to smile and be amused by their strong personalities and unique quirks. I find myself needing to do this when overwhelmed and tired, which has become the new norm for my life.

I've titled this "tired" for both Amanda and myself. School is in full gear. Keeping up is a challenge. After juggling and experimenting with activities and what she can keep up with, I've had to remind myself why we keep it simple. The headaches and vomiting have increased. It is her body's way of letting us know that it is exhausted, or fighting off viral bugs. There is no running to piano lessons, soccer, or gymnastics at our house. There are few if any movie outings or days at the park. Amanda is rarely involved in running errands or heading out to the store. All energy goes to school, homework, and a little bit of socializing. That is how it will stay for at least another year. She doesn't always know what she is missing, but it is discouraging when she does. It is just a season of our life. Seasons eventually change.

I've been on a reading kick lately. I really enjoy reading about scientific discoveries and research. I've read some great information pertaining to childhood cancers. I could write an entire blog entry on the interesting facts I've learned. But what stood out was the section on caretakers and the toll it takes on them. Particularly that it is quite common for parents to try to diminish to other people how hard it is and to sugar coat how they are doing. I am the poster child for this. Honesty opens up vulnerabilities. But lately I find that I cannot hide how tired I am. I have been for quite a while. I even switched to glasses from contacts to cover up the chronic bags under my eyes. Caring for Amanda while I was sick was physically exhausting. I've not had a recovery period. There were days I found myself crawling up the stairs asking God for help to make it up because I was too weak, only to find myself lifting her and bearing her weight because she was weaker than me. It was hard. Really hard. Then Will came and I found myself waking up every45 minutes to 2 hours for over a year. That's just the physical exhaustion. The emotional stress and worry have been great. Some days I feel that I will crack under the pressure. I am not super human. I still have and need a lot of help. It is easiest to open up to close friends and family. I appreciate their listening ears. Often I am asked "how do you do it?". The answer is always the same - I just do. I have to.

Will is starting to sleep better. He stopped nursing and for some odd reason that helped. But in doing so, he started loosing weight. I think it's because he started walking, but regardless he is heading the wrong direction on his growth chart. We're hoping to meet with some specialists next week to figure out what to do. I can't get him to eat or drink enough. We'll just do our best until the doctors can give us some answers.

"It smell's like a poptart in here"

.....says Erin to the furniture store clerk while shopping for a new bed. The comment has nothing to do with my blog entry. I just needed a good icebreaker to distract from my neglected, long absence. I do thank anybody still reading this as my dedication has waned a bit.

I am constantly asked how Amanda is doing. The answer is always the same...it depends on the day. It seems lately that she is starting to have many more good days than bad. Throwing up in front of everybody at Grandma and Grandpa's 50th anniversary dinner, well, that was a very bad day. It just depends. But overall she is more energetic, stronger and healthier. She is sleeping much better. She is also back at school and keeping up with a full day. I'm glad to have her back at school, even though it's reminded me of germs and the fear of fevers. The summer was somewhat challenging. She thinks she can do more than she really can. The heat was hard on her and it triggered more migraines, so a lot of down time was forced on her. She has every episode of Phineas and Ferb memorized. I was glad to hear her get more excited learning about the water cycle rather than the adventures of Perry the Platypus.

Anybody want a BIG castle? It will only take up half your basement - but keeps them busy.
We enjoyed a quick trip to Park City. A hotel swimming pool and the alpine slide were the highlight of the summer.
Will celebrated his first birthday. I can't believe a year has already passed. Birthday's have new meaning at our home. They are really reason to celebrate and be grateful for what we have. We find ourselves back in the throng of medical appointments again. He's not gaining weight like he should. When you have a one year old that eats like a six month old and seems to have a lot of food aversions, it becomes a bit of a problem. We're waiting to get in to an endocrinologist. I joke with Scott that we've been to every clinic on the first floor of Primary Children's between our three kids. Looks like we're expanding to another level! It's yet another challenge, but one worth taking on. We're totally in love with this kid!

Relay for Life Central Davis 2010.mp4

We were sent a link to this post on Youtube. Pretty cool job done by the people who put the Relay for Life together. You will see some familiar faces on there as well.

RELAY FOR LIFE 2010

Amanda participated in Relay For Life. Words cannot describe how much she enjoyed herself. She ran around for hours laughing and playing. She proudly walked the survivors lap while people cheered. I choked back tears watching as she radiated happiness and life. She has come so far in one year. We are so grateful to be able to celebrate her life!

We are in awe at the amount of support we have received financially. It has far exceeded our expectations. We are still getting donations and will post a final tally. It's because of donations like these that Leukemia ALL has such a high cure rate (95% for Amanda). Thank you so much for helping fund research, cancer cures, and support for families battling this disease.

We especially need to thank Rick for walking over 50 miles. Yes, that's right, 50 miles!!! He started at the beginning and went all night until it ended - no sleep and very few breaks. You always leave us in awe!

Many other thanks are in order.

Scott, thanks for having the desire to do this and for taking what little time you have to organize our team.

Thanks Dad for the great pictures, helping with all the hauling of stuff, and proving to me that you really are quite handy in the kitchen.

Scott's parents - for the many long hours with Will, always being around to help whenever needed, and for adding a lot of hours on the track.

Mom and Carol - for herding cats (my children)

Jenny & Robert - thanks for sticking out a very long night and raising such awesome teenagers.

Dayan, Yassah, and friends - for being such awesome teenagers! I'm amazed at what great kids you are. You were more than willing to help and you guys put in some serious track time!

Deanna - for taking my request for a few items to feed the crew and turning it into a table full of delectable delights.

Dan, Teri, and kids - thanks for being great friends that are always there for us. Hope you can walk tomorrow Dan. You are seriously going to be feeling those amazing 16 miles.
To Erin - for taking one for the team and being the only person to actually sleep.

Craig, Jean, Kids - for helping out with the food sales (learned a few tricks for sweet talking the Health Department) and for continuing to support us though far away.

Ed, Viki, John - thanks for being willing to do whatever was needed. We appreciated you sweating it out during the super hot hours.

Matt, Mary Ann and Mikey - 7 months Pregnant, in that heat? Enough said!!!

Donna - for the great ice cream making tips.

Thank you to all our friends and family that stopped by, wanted to come and couldn't, and those that passed on well wishes. We appreciate all of the support!

Relay

I've had a request for a quick link to Amanda's team page for Relay for Life.

http://main.acsevents.org/site/TR?pg=team&fr_id=21760&team_id=755882

We'd love to see as many friends and family there to cheer her and others on. There will be fundraising activities there to keep the young ones entertained. Thank you so much for the support we have received! We are always in awe with how many people are thinking of her.

EUREKA!!!

For many months Amanda has endured the wrath of miserable lumbar punctures. She had clinic today and for the first time dreaded it. Not because of needles or all the usual anxieties. She feared it because of the headache she'd get from the LP. After a lot of family prayer (thank you Scott for the beautiful blessing), persistence, and incredible support from her doctor's I am so happy to report that we FINALLY are having a recovery free of a screaming headaches, pain, and vomiting. All of her doctors agree that she is very sensitive to the procedure itself, not so much the medication they are using. They are administering the chemo much more carefully now. And something as simple as letting her rest and not moving her for a good three hours post-recovery made a huge difference. She's one of those "special" patients that needs a little extra care. All of her staff at Primary's went above and beyond today to accommodate her. We are so grateful for them. She's still on IV fluids for a few days, and the beloved IV Benadryl and Zofran are prepared for attack if needed. So far she is eating, drinking, and happily watching Phineas and Ferb while taking care of her virtual pets online. It is such a wonderful change to have her recovering comfortably!

Amanda is looking forward to Relay for Life at the end of the month. Thanks to so many of you for your generous donations! If the cash flow is a bit tight a great way to still show support is in letting Amanda know that you are cheering her on - it really brightens her day. When I told her that survivors circle a lap with everyone cheering for them, her face lit up!!! She is really looking forward to it.

Join in the Relay for Life

This is a call to all friends, family members, and any other followers of this blog to join us in our first fund raiser for the American Cancer Society. We are getting a group together to walk in the Relay for Life event on July 30th and 31st. This event will be at Barnes Park in Kaysville and will be a 24 hour walk to raise funds for the ACS. Since Amanda's diagnosis early last year we have been on the receiving end of many gifts and charity. We always wished there was some way to pay it forward and be able to do something for others going through similar situations.

Though we can't possibly do all we would love to be able to do to make life better for those going through different stages of cancer, we can make an effort no matter how small. It all adds up to greater things for someone whom you may never know or meet. We hope you will join us either as a team member walking, or as a donor to help the great cause. If you are interested, please click on the link to learn more, donate, or join our team.

http://main.acsevents.org/site/TR?pg=entry&fr_id=21760

The name of our team will be Supporters of Amanda. Whether we have several on our team or just a couple of us, we will be trading off as we walk for 24 hours. It should be a good time. We will provide more details as often as we can.