Time For Relay

Time flew by quickly. Its time again for Relay For Life. Tonight we meet at Barnes Park to take part in the Central Davis Relay For Life. It will start at 6 pm with a victory lap by cancer survivors. Then from there our team will keep someone on the track until noon the Saturday. I hope we are all up to this. Amanda is definitely excited. She remember how special she felt last year walking the track with the other survivors as well as how much fun she had with everyone with all the activities that were going on.

I want to thank everyone that made it to the Supporters of Amanda Swim Party we had last Friday. We had a great turnout and a wonderful amount of donations. All the spare change sure added up. I took the bucket in to the credit union this morning to use their change machine and we had a total of $248.86 donated just from the swim party. We are very grateful to all those who donated. Every penny donated is going to a great cause with the American Cancer Society. I added the amount to our team's donations that you can see at our Relay For Life page here.

Also, I got some great video of the swim party at the wave pool and posted it on YouTube for everyone to see. I'm sure some of you didn't want yourself posted on YouTube in your swim suit. Sorry. Click here.

OK, its not really our swim party. Thank goodness we didn't have that kind of turnout. I get claustrophobic just watching that. Our turnout was excellent. Amanda was about the first one in the water and one of the last ones to come out. She had a great time being surrounded by so many people that have shown love and support to her during the last couple of years and we couldn't have asked for a better turnout.

I don't have Mary Ann's camera so I will have to post some actual pictures from the swim party and Relay later this weekend. Thank you again to all those who came, to those that donated, and those taking part in the Relay tonight. If you are not signed up to walk, please come on by and cheer on our team. We hope to see you there.

You're Invited

To all the Supporters of Amanda over the years, please accept our invitation to celebrate her completing her chemotherapy. Bring your friends and family and help us celebrate. Details are below, just click on the play button. We hope to see you there.

Make your own digital invitation

FINISHED!!!

AMANDA IS FINISHED WITH CHEMOTHERAPY!!!!!!!!!!!!!!!!!!!!!!!!!!!

The final pills have been taken. And now that she's been chemo-free for 10 days there's a little bit more color to her lips, a little bit more energy to her step, and a little bit more joy in her overall demeanor. She is slowly feeling better. We went on a family outing on a Saturday for the first time in over 2 1/2 years. It was so wonderful to get out rather than sitting at home passing time on the chemo clock. Overall, she is happier. There are the occasional moments of sadness for leaving behind what is familiar. But seeing glimpses of herself slowly come back brings a happiness to me I cannot describe. As her parents we are starting to feel a large weight being lifted off our shoulders emotionally, financially, and physically. At is hard to describe. It really hasn't set in yet completely. But we can easily say we are so excited to finally be here!

I have decided to keep this blog open for a few more months. We are still in a critical time for her, as the first 3 months are the riskiest for cancer returning. I do not believe it will, and her doctors don't either. But after two years of blogging about sadness and hardships, it will be a welcome relief to record some of the more joyful events of her life. We are waiting to hear back from Make A Wish. Now that she can actually leave the house without fear of chemo migraines we'll start getting into some activities for cancer kids, and we are eager to celebrate a big party for her on the 22nd (I'll post more info in a few days)

On a different subject I want to offer an explanation as to why our house is for sale. Despite loving our home and neighbors very much, I can't deny the feeling that we need to be somewhere else and that Amanda needs to start over. A new season of our life is starting and moving feels like the right step for us. We appreciate the support and understanding that we've been receiving with this decision as we have no intention of turning our backs on the people that have loved and supported us through our trials. We will forever be grateful to those that have seen us through our darker days.

Last Treatment

It is so hard to believe, but we are here. Her last outpatient treatment. She finished it on June 15th and took her last steroid pills on the 19th. Her very last chemotherapy pill will be taken on June 30th. It is earlier than we expected. And the beautiful irony is that the 30th is Scott's birthday and the last day of our Cobra insurance. We could not have timed it better if we had tried. I no longer believe in coincidence, rather, blessings.
Amanda went into her treatment with great hesitation. As I said before, she is not ready to have it end because she is comfortable with what is familiar. But the staff at Primary's made such a big deal and celebrated with her to the point that she quickly forgot about her concerns. She was showered with gifts and praise. It made her day. The quilt she received is just beautiful. So much effort went into making it. I wish the seamstress could have seen the joy it brought her. It made this last treatment round much easier than the others. I am so relieved to be done with roid rage. I eagerly got rid of the piles of medical equipment at my home and bid farewell to home health and IV pumps. We go in on the 27th to have her port removed. It really hasn't set in yet. I find myself reserving my excitement until we are really done and I can see my daughter return to her energetic self again. It will take time. Her immune system is really low right now. It will take anywhere from 6 to 12 months for her immune system to return to normal. We still have to seek immediate medical attention if she runs a fever. And she has follow-up appointments every month for the first year. It is all still so overwhelming to take in, but for the first time, it's a good overwhelming.

Credit must be given where credit is due. Congrats to Nessie the dinosaur for enduring over two years of chemo treatments, ID badges, and excessive loving. notice all the "love spots" (as Amanda refers to them as) where her fur has rubbed off. Nessie has been by Amanda's side exclusively throughout treatment. The staff knew this little animal by name and treated her like a patient. During Amanda's toughest recoveries we made up stories about Nessie and wrote them down in a book. I'm sure it is something she will cherish someday. It's funny, but Nessie kind of has a spirit of her own. She's part of the family. I'm so grateful for the comfort she provided my daughter.

Leukemia Treatment

Have you ever jumped into a cold pool before? There is that initial shock and discomfort. But slowly, the cold water feels warmer and more comfortable. You adjust. And before you know it, it's time to get out. It doesn't take long to realize that getting out will be cold and uncomfortable just like getting in was. Which is strange because being outside the pool used to once be warm and familiar. Amanda goes in for her last chemotherapy treatment today. She is reluctant to leave the pool. She's been in for a long time now.

Getting There

I just scheduled Amanda's surgery to have her port removed at the end of June. There is a sense of disbelief that we are finally getting there. She has her last lumbar puncture on June 15th. She does have to go in for an MRI next month. Her last treatment proved to be more painful than usual. She's again off her steroids right now (much to my relief) and will go in to determine if the drug is causing joint damage. Only six weeks left of treatment. Yeah!!!

If you ask Amanda how she feels about all of this, she will let you know that she is not excited. She cries about missing her treatments, missing the hospital, missing the life she now knows. According to the experts, this is pretty normal. There will be some adjusting for all of us. She had her old friend stop by. It helped rekindle her spark for social interaction with friends. It will take a lot more interaction like this to get her feeling comfortable again with the world outside of chemo, family, and video games. It will take some time, but I think for the most part she will adjust. She's already proven herself pretty resilient.
As for myself, I cannot look at life the same way. For example, her cousin's friend was just diagnosed with liver cancer. I painfully understand what those parents are going through. I can't ignore it and am deeply saddened each time I hear of other children beginning treatment. But, I do know that there is great purpose in what pediatric cancer patients go through. They were not randomly selected to endure this. God knows that they are very strong souls.

On a less dramatic note, part of our moving on process is to participate in Relay for Life (as you can see the details below) and to have a very big party to celebrate the end of chemotherapy. We'll post more details later. Amanda has already made it known that swimming is order.

Erin and her great fashion sense. She calls her ringlets "slinkys." When she's in a good mood, she's my comic relief to all of this.

Will is doing great. The new medication to help him gain weight is working great. He gained so much last month that his doctors were shocked. All the months of running tests and exams have ruled out any genetic or metabolic problems other than the blood clotting disorder. He's eating and tolerating just about everything now. His physicians finally agreed that his digestive track was delayed from the blood clot he was born with, and that his liver just wasn't producing enough growth hormones from his inability to eat enough. I think we are over the bad cycle this caused. It is such a relief to have one less medical problem in our household.

Time To Get Ready For Relay!

Relay for Life is coming up again and Team Supporters of Amanda is getting ready to walk all night long. Put July 29th and 30th on the calendar and help us support the American Cancer Society with this fundraiser.

Last year we decided to take part in the Central Davis Relay for Life and we ended up having a lot of fun while raising a lot of money for the American Cancer Society. We've been touched by all the ways people have given, supported, donated, and even dedicated their lives to those who have been affected by cancer. We felt we needed to start doing a little something to give back and had some fun doing it so we are back at it again.

If you missed it last year, here is a run down. Teams are setup and walk from 6 p.m. Friday night until noon the next day. At least one person on the team is on the track at all time. Throughout the night there are times we celebrate, remember, and fight back. It made for a great time last year and the kids sure had fun. If you are interested in joining our team or helping our team make our donation goal, you can do it online at the link below. Or if you have any questions please feel free to contact us.

2011 Supporters of Amanda Relay for Life

Be a Supporter of Amanda and join the team or make a donation.