CureSearch for Childhood Cancer...

As you may or may not know, CureSearch for Childhood Cancer is holding their first-ever walk in Salt Lake City!! This event is especially important to us because of our daughter Kaidan, who is our hero and a cancer survivor!

CureSearch is a non-profit organization that funds the lifesaving, collaborative research of the Children's Oncology Group (COG). The COG is the largest children's cancer research organization in the world!! They have over 6,000 physicians, nurses, and researchers at more than 200 hospitals in North America. 90% of children in the US with cancer are treated at COG hospitals.

Every year, more than 13,500 children and adolescents are diagnosed with cancer and more than 40,000 are undergoing treatment. Overall survival rates have increased in the last 40 years from 10% to 78%, but 1 in every 4 children still loses the battle with cancer. Cancer is the number one cause of death by disease in children.

Primary Children's Medical Center (PCMC) is a COG hospital. In 2010, between 170-180 kids were diagnosed with cancer at PCMC. That means that 3-4 families per week were given the same devastating news that we received on June 25, 2007 - they were told that their child had cancer.

You probably don't know that children with cancer are treated with chemotherapy drugs that were approved in the 50's, 60's, and 70's. We certainly did not know this before we became part of the childhood cancer world. The only thing that has changed is the doses that our kids receive! Children with cancer are given mega-doses of these toxic drugs - doses that an adult body could not handle. Our children are amazingly resilient, but even so, 3 out of 4 childhood cancer survivors will suffer long-term side effects - heart problems, neurological disorders, and even secondary cancers, just to name a few - from the chemotherapy that had to be given in order to save their life. Some of these effects are life-threatening. There has only been one new drug introduced for pediatric use since the 1980's - it is a drug for relapsed leukemia.

AWARENESS = FUNDING = RESEARCH = CURES!! Only research will cure cancer!

We would like to ask you to join our team for the walk in July. It would mean the world to us. Our goal is to spread the word about childhood cancer. We want CureSearch's name to be known in every household. We want CureSearch to be as well known as other foundations that have made an amazing impact on the adult cancer community, such as the American Cancer Society, the Leukemia and Lymphoma Society, and Susan G. Komen.

The CureSearch walk will be held on July 9, 2011 at Liberty Park in SLC. This is a family walk, so we'd like you to have your entire family register! The cost is $10 for ages 16+, there is no fee for anyone under 15. Of course, we'd love your help with raising funds for childhood cancer research; however, our family goal this year is AWARENESS, so what is most important to us is that we have your support and that we have you on our team. If you are not able to walk, you can join as a virtual team member. If you prefer not to use credit card information online, you can join off-line - just send us an email and we'll get all the information to you. We also need sponsors, volunteers, and in-kind donations for food/beverage items and family friendly entertainment for the day of the walk. If you can help in any of these areas, please let us know.

You can join our team, donate, or find more information by visiting www.curesearchwalk.org/saltlakecity/kaidan. Our team name is TEAM AWESOME - in honor of AWESOME KAIDAN.

If you have any questions at all, please don't hesitate to call (801.205.2905) or email (mysteejsuds@q.com). Also, please forward this email on to anyone that you think would be interested in supporting us. We'd love to have youth groups, sports teams, and companies join us. Please join us, not just for our family, but for the entire Utah childhood cancer community - especially the children fighting this cowardly disease. Together, we can REACH THE DAY where we can guarantee every child a cure followed by a lifetime of health!

We have been consistently humbled by the outpouring of love and support our family has received since Kaidan's diagnosis in 2007 and we can't wait to share this event with all of you!

Love, Nate and Mystee Sudbury

my daily life...

My daily life is OUT OF CONTROL!! I feel so ill-equipped right now. My time is completely consumed with driving everyone everywhere, phone calls to doctors/bill collectors, researching medical things on the internet, driving everyone everywhere, sitting at doctor appointments, and driving everyone everywhere! We seriously have about 2-3 doctor appointments a week between Nate and Kaidan and we only have one car, so I wake up in the morning and take Nate to work, then I take the girls to school, then I pick up whoever has an appointment and get them there, then I take them back to wherever they came from, then I pick up the girls from school, then Nate from work, then it's on to soccer practices and games....blah, blah, blah...don't even mention adding on the normal errands like the bank and grocery store. I once read a sign that said, "If I'm a stay at home mom, then why am I always in my car?" That is exactly how I'd describe my days the past few weeks, and I am not happy about it (neither is my bank account with gas prices right now)!

Anyway, enough whining...

Nate went in yesterday for his biopsy of the thyroid nodule. First, they did an ultrasound to get a better look at the nodule and it turns out that there are lots of them! This is entirely normal, most people have little cyst-like things on their thyroid. Luckily, after the long ultrasound and discussions between the radiologist and Nate's doctor, the decision was made to hold off on the biopsy. They decided that none of the nodules looked suspicious and he was okay to wait. They did, however, find another worrisome spot. It's most likely an enlarged lymph node near his collar bone. I have spoken with the doctor, and he reassured me that, even though Google is concerned, I don't need to be :) We will watch this "spot" and do another ultrasound in 6 months to make sure it isn't growing. They are also running some blood tests to check Nate's thyroid, parathyroid, calcium, cholesterol, etc, etc, etc... I'll keep you posted, but for now, he's good :)

Kaidan has not been doing well. She is in a lot of pain again, throughout her entire body. She is experiencing tons of pain in her ankles and knees, but she is also complaining of being very tired and "just not feeling right". Today, her entire body hurts - it's even painful to the touch, which is weird. She has not been to school all week. We had a good, long talk last night about all of this and it went a totally different direction than I thought it would. I told her that if she is in too much pain to go to school then she cannot play soccer anymore either. I explained that I want her to get better and feel good and that this was the only way that could happen. I thought she would say she's not going to quit soccer and she'll start going to school, but instead, she started crying and said she knows she needs to quit soccer. She said the pain is so bad that she will stop playing soccer - I feel so, so bad for her. At the same time, I feel completely incompetent. I don't know what to believe - does it hurt all the time, but she only tells us sometimes because she doesn't want to miss out on EVERYTHING, or does it really not hurt that bad and she only tells us when she doesn't want to do something? I really do believe her, you can see that she doesn't feel well. I really have no idea what to do. We are working on getting her in to see a rheumatologist and another doctor for her AVN, so hopefully we can get some answers. If she's still home from school tomorrow for pain she will be seeing her pediatrician - I'll keep you posted.

Join our team, TEAM AWESOME, for the 1st ever SLC CureSearch walk!! It's $10 to register and kids under 15 are free to register. We'd love to have a HUGE team of supporters, walking in honor of the Awesome Kaidan!!

results all around...

I'm not sure what's going on with blogger. I really do know how to use paragraphs, but they just disappear when I publish the post. I'm sorry that makes it hard to read :)

Kaidan's orthopedic doctor FINALLY returned my calls and basically said that the MRI showed abnormalities in the bones, but nothing new and nothing that should be causing the increased pain. He suggested we give her Ibuprofen and let time take over. I told him we've been doing that for 3 years and something needs to change. I asked him if he was certain there wasn't leukemia lurking in there causing the pain - he said there isn't. He told me that he thinks the best thing at this point is to see another doctor and get a new set of eyes on it. So, we start over. I really would just let it all go, but I can't handle Kaidan being in pain all the time, so i won't. Also, the stomach issues seem better right now!!!

Nate's MRI went well. The 2 lumps they were looking at are called Lipomas and they are really nothing to be concerned about. Unfortunately, they inadvertently found a nodule on his thyroid and there is a 15% chance it is cancerous. He will be having a Fine Needle Biopsy done by ultrasound next week. I'm worried, because I think of when he had melanoma. Only 5% of skin cancers are melanoma - his was. So, while I know that 15% chance of cancer means 85% chance it's not...we had 95% chance it wasn't melanoma - and it was. Ahhh...I am so, so, so tired of living this life. It's exhausting.

That's it for now. I will soon be posting on our SLC CureSearch Walk (we'd love you to join our team - Team Awesome!!) - so keep watching for that.

kaidan's test results and Porter is 3!!!

I'm sorry that it has taken me so long to update with the results of Kaidan's tests. I'm a slacker :( FYI - this is a LONG post and I'm sorry :) As far as the abdominal x-ray, the GI doctor felt that Kaidan was backed up, so we did a colon cleanse this weekend. I am now treating her with a maintenance dose of Miralax to keep her cleaned out. However...it doesn't seem to have made a difference yet - tonight she was not feeling well at all. We may have to do the cleanse one more time, but we'll see how tomorrow goes. If she's not feeling better after a second cleanse and by the end of next week I am taking her back in - to a different GI - hopefully I can find one that doesn't have a 3 hour wait when you have an appointment! I think it's ridiculous that they have signs all over that if we are 15 minutes late we will have to reschedule, but they can be as late as they want! The orthopedic doctor has not called me back yet...another frustration I am working through right now. She had her MRI last Thursday, and I've had to track down the results myself and I really don't know what they mean, but I'm not liking what I think they mean. He is supposed to call me tomorrow to tell me what our next steps are - that is, if he has time after surgery. I am really disappointed in the response I'm getting from this doctor right now. I really, really hope he will call me tomorrow. Here is what the MRI report from the radiologist says: For the left ankle - Irregularity noted in the articular surface of the left talar dome, greater than on the right, with associated flattening of the talar dome, consistent with sequelae of previous avascular necrosis. ( Google has helped me to understand that this means the joint surface of her talus (the bone between your foot and leg) is irregular and it's worse than her right foot. It's also collapsed, consistent with previous AVN.) For her right ankle - Subtle residual heterogeneity of the bone marrow remains, with an undulating articular surface of the talar dome, likely secondary to remote osteonecrosis. (Google says heterogeneous means "composed of parts having dissimilar characteristics". So, I think this means that her bone marrow is messed up and the talus is also collapsed, but not as bad as the left. Undulating means "wavelike appearance", so the joint looks like a wave and is partially collapsed - but not completely.) There are other things in the report that I have googled and they are worrisome for me, but I don't know for sure what they mean, so we'll see what the doctor has to say and what our options are. Kaidan has good days and bad - the bad usually follow a day of activity, but she doesn't want to be left out of anything. We had a good talk today that she may have to sacrifice some things that she wants to do in order for her bones to heal - but it really isn't fair. It makes me mad that cancer is still taking things from her. Nate has also had some stuff going on the past couple of months. He's had a lump in his neck area that has gotten bigger and become more of a nuisance, as well as a lump between his neck and shoulder that is really causing him some discomfort. He has seen two different doctors and today he had an MRI of the two areas. We probably won't get the results until Friday. We are pretty sure that it's nothing serious, and the doctors feel the same way, but because he had the melanoma we have to be really careful. The lumps are in the neck and shoulder area, which is relatively close to his ear, where the melanoma was, so the doctors wanted to be sure they were not anything more sinister than tissue build up. I'm glad the doctors were proactive, because I would rather be safe than sorry. On a non-medical note... yes, we occasionally have events in our life that are not medically related :) ... PORTER TURNED 3!! He is growing up so fast and it's so crazy because he is our last baby. We no longer have to carry diapers with us or worry about bottles and feeding schedules. He has become such a little man. He is so stinkin' cute, which is a good thing because he has a temper! If he wasn't so cute he'd be a lot harder to deal with :) He used to be so mellow, but he's grown out of that the past few months - it makes me sad. For his birthday he wanted monster trucks, a race car, and a tiger cake. I, of course, didn't get any pictures (worst mom ever award!!) because I forgot my camera. My dad took some, so I'll have to get them from him to post. Since Porter is 3, I thought I'd put 3 things that we love about him on here, so we can remember. 1. He LOVES basketball shorts. Seriously...LOVES them!! He will not take them off. If he has to wear pants the shorts are under them, if we can convince him to do that - usually, he wears them over his pants. 2. He has the biggest, most beautiful brown eyes - with super long eyelashes that most girls would give anything for. 3. He drinks more in a day than most people do in a week! He cannot go to bed without 2 cups full of drink - otherwise we are waking up in the middle of the night for refills. Sometimes, even with 2 full cups, we have to do refills before morning. I have no idea how he wakes up dry. I'll try to get some recent pictures up soon!