DC report...

I was going to write all about this, but Kristin did such a great job I just copied hers. So, here's all the info about our DC trip!!

We are back from our trip to Washington DC with CureSearch to advocate for childhood cancer. IT.WAS.AMAZING! I went with my friend and fellow cancer mom, Mystee. I'm so glad she came with me!! I couldn't possibly find the words to describe the experience, but I will do my best.
DAY ONE:

Wednesday afternoon we met for some training on the issues we were bringing to our representatives and on how to bring it to them. The first speaker was the President of CureSearch, John Lehr. He gave a basic intro of our speakers.
Next we heard from NBC Correspondent Chuck Todd. He talked to us a little about the issues and how to talk to our senators and congressmen.

Then we got to hear from the new president of the COG (Children's Oncology Group, a group of about 5000 pediatric oncologists that have bound together to share research. The are the worlds largest cooperative children's cancer research entity. Most pediatric oncologists in the US are part of the COG). Oh, he was incredible. He talked about what to say to convince them to fund pediatric cancer research (or rather NOT CUT the budget for the NCI, National Cancer Institute). I took notes because everything he said was noteworthy. Here are a few excerpts:
"Tell them before congress started funding NCI 1 in 10 children survived childhood cancer. The government got involved, and started funding research, and now they have a 3 in 4 chance of survival. We have this survival rate because people in these offices said 'we are going to invest! These are our children and we are going to invest!' And then ask them, do you have the courage to invest in our children?"

"We are curing our children with drugs from the 50's, 60's, and 70's. We have only improved our cure rates by giving more, not by discovering more. We push them to the brink. Most of them will experience toxicity at some point. This is unacceptable in the adult cancer world, why is it acceptable for children? Curing is not enough. They deserve a lifetime of health. They need new drugs that aren't as toxic. We have the tools for this, but we need the funding."
"How will history look back on this congress? By cutting back, our children will suffer."
I wish I had brought a tape recorder. He was really a great speaker.

Next we heard from Nancy Goodman, founder of Kids V Cancer. She was introducing the Creating Hope Act, one of the acts we are asking our representatives to cosponsor. It is basically an incentive for drug companies to create pediatric cancer drugs. Right now 60% of new drugs for adult cancers come from the private sector. Guess how many new drugs come from the private sector for pediatric cancer? Zero. There is no profit to be made because there aren't as many patients. If there is no profit, there is no incentive for drug companies to manufacture new drugs. We have only had one new drug for pediatric cancer since the beginning discoveries of chemotherapy. ONE!! Even that drug was in the 80's. So yeah, they need an incentive, and this act gives them that. It will give them a "golden ticket" if they manufacture and get FDA approval on a pediatric cancer drug, which they can sell (worth hundreds of millions of dollars) to a drug company that wants to get in the "fast pass" line for FDA approval on another drug. Pretty clever if you ask me.

We were also asking for a cosponsor on a survivorship act to deal with the issues of long term side effects kids deal with long after they beat cancer.

We then received some training from Soapbox Advocacy Training. He was great. He taught us how to share personal stories, and always get back to what we are asking for. He taught us how to talk effectively and get them to listen. It was very valuable training and worth every penny they paid for them, whatever that was! He had us cracking up laughing and learning at the same time. Very well done.

Later that evening we heard from a young man (can't find his name anywhere) who was diagnosed with cancer just after he had signed on to a college with a baseball scholarship. His dream was to become a pro-baseball player. His backup plan, dream #2, was to be a doctor. He never got to play pro baseball. He finished school, although it wasn't to be a doctor. He brought his chemo to class with him, pushed play on his tape recorder, and somehow went through his treatments and college at the same time. But being a doctor was out of the question, chemo and radiation does a lot to your body and mind. So he isn't the hero he had planned to be. No, he's a better one. He has a new dream. With the crushing of both of his dreams emerged a new one. A dream that no child would ever have to suffer from cancer again. Now that, my friends, is a dream. Why are our heroes baseball stars anyway? I wanted a picture with him the way you want a picture with someone famous. He's a hero.

DAY 2:
The shuttle bus took us down to Capitol Hill for our rally. We heard from our champion representatives who are leading the fight in congress for pediatric cancer. Both great speakers and men I admire very much. Congressmen Michael McCaul from Texas and Chris Van Hollen from Maryland. One Republican, one Democrat, united for this cause. Because do we really see party lines when it comes to the children of our country?

Next came the best part of the weekend. Nine year old Jack Rolle got up in front of all of us, alone on the stand, and talked about his experience with a brain tumor. We saw cancer from the eyes of a child, the fear, the pain, the suffering, the sickness, in his own words. There was not a dry eye in the room. And he was given an immediate standing ovation for his courage and bravery. That is who we are fighting for. The child who hears "you have cancer" and knows that means you might die. The child who goes in for brain surgery and is afraid because his mother can't come back with him. We are fighting for him, for all of them.

Next we were off to meetings with members. Their offices were incredibly busy with all that is going on right now, much more than last year, but we met with staff from Senator Hatch's office (LOVED her), Congressmen Chaffetz' office and Senator Mike Lee, who we were able to meet and talk with briefly.

Mystee had put together books with stories of 30 Utah kids who have battled or are battling cancer. Some survivors, some angels, and some fighters. We left a book with each of them, hoping they would take the time to look through and read some of them. We know it's an uphill battle, but if we don't ask, nobody will. And that would be a shame. So we'll keep asking until these kids get what they need. We both felt really good about how things went, and hopefully we will make some progress.

When it was over, we were exhausted and crashed at like 9. Except then we giggled and talked until 1am in our beds. It really was nice to be able to relax a little once it was all over.
So there you have it, another great trip to Washington DC!

where to start???

I have SO MUCH to write about, I don't even know where to start! So...I'll start with the kids and go from there :)

Preslee has pneumonia...again...she seems to get it EVERY stinkin' year! I feel so bad for her, because she is miserable. She has been sick since Thursday, but started feeling better Sunday and Monday - but she woke up today with a fever again, so I took her in - I'm glad I did because she needed to be started on antibiotics.

Cash is good, although I'm sure he'll get sick eventually - he's the only one who hasn't been down with anything yet.

Porter is also good, but he did get RSV a few weeks ago. He was super sick for several days - and it was torture for all of us - especially at night! He's completely back to normal now, and he's just lucky he's so dang cute because he is hell on wheels ;)

Kaidan...where do I start with her?? She was having so many problems a month or so ago and then she came down with pneumonia, so that seemed to take over. Since then, she's done better, but she's still not 100%. She has seen the neurologist for her headaches - which just left me confused - we left that appointment with strict instructions to not treat her headaches with Ibuprofen more than 3 times a week, never to give her Oxycodone for them, and to not let her takes naps (which she still does daily...yes...she is 9). We also left with an anti-depressant, which is supposed to help headaches. I haven't given her that one yet though, because it makes me nervous. I also haven't made her stop taking naps...she's tired! I don't know what to do about all of that. Plus, you add all of the other aches and pains she has and it's virtually impossible not to treat her with Tylenol, Ibuprofen, and Oxycodone. I don't know what to do, so I'm just trying to make her ride it out without meds - but I'm torn because I don't feel like I should make her be in pain all the time. UGGH!!

We were able to get her some custom insoles and new shoes (thanks to Grandpa!!), so I'm hoping that her pain in the ankles and knees will start to go away. She has been complaining non-stop today about the backs of her knees again, so I really don't know if it has anything to do with the ankles or not. Her heels have really been bothering her as well.

She goes in tomorrow to see the cardiologist for some chest pains she keeps having. She will also have an echocardiogram. Next week she sees the GI doctor to follow up with all of "those" issues and then it will be time for her oncology check-up again. Whoever told us that we were "done with cancer" in November 2009 was insane. I have felt more stressed out the last 8 weeks than I have in a LONG time. I feel like I'm totally losing control...again...

I feel like I am bombarded daily with issues that I don't know how to handle. I don't know what to do when everybody is feeling crummy and as soon as one of them starts feeling better, someone else comes down with something. Add all of Kaidan's issues on top of that and I am going CRAZY! I'm not even kidding - I am seriously so overwhelmed. Is this normal?? Is it just how life is when you have 4 kids??

On an AMAZING note...I was able to go to Washington DC with Kristin, a friend and fellow cancer mom, last week for CureSearch's Childhood Cancer Awareness and Advocacy Days. It was so amazing and I just wish I could devote hours and hours of my life to this cause. I hope that one day there will be a cure for children with cancer - a cure that doesn't destroy their quality of life along the way. I really thought I'd feel like writing all about this tonight, but I'm too tired. I will update on Kaidan and the other kiddos later this week and then hopefully I can gather my thoughts on DC and tell you all about that as well!

Have a great week and thanks for listening to me whine!

spring...please come :)

This will just be a quick update - I feel like I need about 10 more hours in the day - with my kids sleeping - just so I can accomplish part of my to do list...

Porter is doing so much better. I think when he tested positive for RSV we were at the worst of it, so it got quite a bit better a few days later. He still has a lingering cough, but I imagine that will last awhile.

Kaidan is not doing so well :( I feel so bad for her because she and Preslee just started a new school and she has only been able to attend 1 day! It seems like she has been sick or miserable from pain FOREVER!! It's been about 4 weeks since she has felt "good". I don't even consider her good as a great thing, but it's better than she has been this last month or so. She was running a pretty good fever for 8+ days, so I took her in to the pediatrician Friday night. They tested her for everything: strep, a UTI, the flu, etc. Everything was negative so we headed up to PCMC for a chest x-ray and blood work. Her chest x-ray showed the possible beginnings of pneumonia and her labs were all over the place, so she's now on 2 antibiotics to hopefully clear it all up. I'm hoping we caught it early enough that she'll make a quick recovery. She spiked a fever around 1:00 this morning, but she's been okay through the day today. If she's still fevering by tomorrow I'm supposed to take her back in :(

Of course, I have a twinge of anxiety going on because I didn't like that her hematocrit dropped almost 5 points from last week and her platelets were down almost 100 as well. Her white blood count went up a little, but it's still in the normal range. She also had many abnormal things on the differential (where they look at the blood cells). I can't remember all of them, but I know there was poikliocytosis, high neutrophils, bands, and a few others that were off. I know all of this can be easily explained by pneumonia, but unfortunately I also know what else could explain it. I am happy that she hasn't had a fever today and I'm optimistic that we'll make it through the night and all will be well. It's just a little of that "crazy cancer mom" seeping out. I worry about her - all the time - but especially when it seems like she's been sick forever - it's exhausting (physically and emotionally) to live this life. Sometimes I hate what cancer has done to my family.

Everyone else is healthy and I'm hoping it stays that way. I've sanitized and scrubbed and sanitized some more. I cannot wait for spring so that I can get the kids outside more and off the couch!

a quick update...

I just wanted to post a quick update to let everyone know how things are going.

Kaidan is doing okay. Porter ended up with RSV and he's been sick for a week and a half! Kaidan seems to have gotten it, so the other symptoms she's been having are difficult to separate from this sickness. She's been running a fever of 102-103 for 5 days now and she has a bit of a cough. She's still having a headache daily, but it may be from the fever? She's also on a steady dose of IB and Tylenol, so that is masking everything as well. I'm very worried about her, but I'm trying to minimize it and keep it to myself. She has needed Oxycodone for her ankle pain and headaches a couple of times - I hate that.

I'll update again after we get through this illness.

GOOD NEWS!!!

Kaidan went in to the oncology clinic to have a lumbar puncture today. We were checking for relapse :( The ride to the hospital was tough. Kaidan did not want to go. She did not want to get an IV and she did not want to be put to sleep. You would think that after all she's been through it would make it easier, but it doesn't!! It makes it so much harder, because she remembers - she is older now - she knows the possibilities. She started crying that she was scared for the results. I felt so badly because my insecurities, my doubts and concerns had rubbed off on her. She was feeling scared because I let on that I was scared. I feel like my job as a mom is to keep those feelings secret, but I failed miserably as this week of pain went on and on. I guess it's a good thing I can't be fired from this job ;) We talked about both possibilities, and I told her that when we get good news she can dance around telling the world how dumb and crazy her mom is...that made her laugh.

Kaidan did awesome, as usual. She was so scared for the IV and she did do some dry heaving and almost fainted, but she is a trooper. Once it was done she was okay. She was scared to be put to sleep, but I reminded her if she falls asleep upset - she wakes up upset, and if she falls asleep calm - she wakes up calm. That did the trick and she did wonderfully. In fact, she woke up faster and more peacefully than she ever has.

It was so weird being back in that hallway of the RTU (rapid treatment unit) waiting for her to wake up. It was stressful waiting for the doctor to call me with the results. I had so many emotions going on. I wanted so badly to be wrong in my suspicions - but in the back of my mind (okay, every part of my mind) I was planning for the worst. Hoping for the best, but planning for the worst - sad, but true. I was figuring out finances, new time obligations, what we'd do with the kids so Nate could work while I was at the hospital with Kaidan, etc. It was a flood of memories that I wish I didn't have. It was so strange because at the same time I was feeling some survivor guilt. I was thinking about all the families who didn't get good news today. I was thinking about all of the kids who visit the RTU every week and their parents who wait in that hall, just like we did for so long. I was thinking that it was okay - if bad news for us took away bad news for one other family - that was okay. We've done it before and we can do it again.

But... we got good news!! The doctor called me and said her spinal fluid had no leukemia!! There were 2 white cells present, but they were normal white cells. I guess as long as you have less than 5 it's okay.

We still don't know where the pain is coming from. They gave her some morphine today because she started out with some pain and they wanted her to be more comfortable waking up. She felt so good with the help of that morphine that it made me realize that her pain is stronger than what she is letting on. We will follow-up with neurology the first part of March and I'm hoping for some answers.

We are getting mixed reports from the radiologists at PCMC and the orthopedic doctor that we see. Our doctor things Kaidan's x-rays are stable. He would like to see her if the pain sticks around, but I don't know what he'll do for her. I'm still struggling with the fact that this breakthrough pain came out of nowhere at the same time as the bad headaches. I'm afraid that if I let my guard down something bad will happen, but then I have to remind myself that cancer is not a stranger that sneaks into your house when you're not looking. Cancer makes your body it's home even if you're staring it in the face. So, I guess I'll relax a little, because that is all I can do. No amount of worry will change anything, right? I have to remember to live in the moment. That is easier said than done, but I'm trying.

I am so thankful for our good news today - it is a huge weight lifted off my shoulders. Please continue to keep the families who didn't get good news today in your thoughts and prayers. There is approximately 46 of them :( Did you know that? Did you know that an average of 46 kids per day are diagnosed with cancer? You should check out these amazing moms and the stories of their cancer warriors!

As a side note... For 2011 our family is going to be doing a couple of fundraisers for childhood cancer and the families affected by it. I wanted to give you some information now, because I know there are so many great causes out there and we can't possibly contribute to them all. I would just like you to consider these ones that are most important to our family, even if you can only pitch in a couple of dollars, it means the world to us :) Also, donating blood to ARUP - the sole blood provider for PCMC, and joining the bone marrow registry are awesome things that you can do to help save lives!!

So, here are the events we're planning on participating in for 2011. We don't have donation pages set up yet, but I'll keep you posted when we do. I just wanted to let you all know how you can help us this year - if you so desire :)

8/20/2011 We will be doing the Ducky Derby for the Make a Wish Foundation of Utah. We absolutely LOVE Make a Wish and this event!! This foundation has done so much for us, please help us by sponsoring a ducky when the time comes. We may do a couple of other events for Make a Wish, but I'll keep you posted. We love Make a Wish!!

7/9/2011 Salt Lake City is hosting it's 1st annual CureSearch Walk!! I cannot even tell you how excited I am about this. CureSearch dedicates over 95% of their funds directly to childhood cancer research. It is so important that more funding be directed to pediatric cancers to find a 100% cure, without harsh side effects. As soon as we get our fundraising page going, I'll let you know. We'll be looking for team members and sponsors :)

DATE?? HopeKids does an Adventure Walk that we are planning on participating in. We love HopeKids!! They have provided us with so many fun opportunities that we otherwise would not have been able to do. They do several events monthly ranging from movies to monster truck jams!! We love HopeKids, and especially their Utah directors, C.R. and Amy. They have been so kind to our family. We'd love your support when we do this event.

Thank you all! We love you!!

miss kaidan...

I've been debating whether or not to update. I hate to write anything when I don't have clear answers, because I've been really stressed out and I don't want anyone else to have to worry. However, I finally decided I will post this because I'm not too fond of re-telling everyone the same thing over and over. Plus, I forget who I have told and then people get tired of re-hearing the same thing over and over ;)

Anyway, last Sunday Kaidan started complaining of pain in her ankles. I know she's had this for a long, long time, but this was different. She was really in a lot of pain. Then came the headaches...bad headaches. She was asking for pain meds. IB only took the edge off a little - tylenol didn't even touch it. She was also having bouts of nausea and stomach pain, so I started getting worried and on Monday I called her pediatrician who said there is a lot of strep going around and that can cause headaches and joint discomfort. I took her in on Tuesday, hoping it was a sinus infection, or strep, or anything that could be fixed with antibiotics that was making her head hurt, but it wasn't. She looked healthy as could be (other than her flushed cheeks and glossy eyes). The pediatrician recommended we go to Primary's and have a CT scan done as well as x-rays of her ankles and some blood work to check everything out. Wednesday we went up to the hospital for all of that. Everything came back normal, except the ankle x-rays. Her pediatrician said they were "abnormal and worrisome". She said she really isn't an expert in orthopedics, but the report said it looked like she it could be osteochondritis dissecans and they recommend getting an MRI done to further investigate.

Here's where the stress comes in. I fight with logical thinking and "crazy cancer mom" thinking all the time. Sometimes, I think the "crazy cancer mom" thinking is the logical one. Anyway, I'm hoping, really REALLY HOPING that the ankles are just osteochondritis dissecans because that can be fixed. I'm angry because her avascular necrosis never should have gotten bad enough to cause this, and if they had just listened to me in the beginning, it wouldn't have. But, you can't change the past, and ankles are just ankles. I mean, you only use them to hold your entire body up when you walk, so compared to cancer, it's a minor thing ;) There is that "crazy cancer mom" part of me that says: 1. Her MRI in November 2009 and her x-rays in November 2010 were all normal, and they all showed no AVN or improvement of the AVN. 2. Her headaches came on super strong at the same time as this ankle pain. 3. They are related and it's not good... Then, my "logical" thinking says: 1. Dumb doctors mis-read MRI's and x-rays all the time, they missed this. 2. The headaches are caused from a very minor sinus infection that is barely visible on a CT scan. 3. They are not related, she is fine.... Then, the "crazy cancer mom" starts again.... You get the picture, right? I have multiple personalities!!

We don't really know what is going on with Kaidan. She is better than she was last Sunday as far as the pain level. The headaches come and go. The ankle pain is pretty bad, but she is still getting around. She gets tired when doing silly things like mopping the floor or trying to dance. Her arms started hurting this morning. She's back to having a little appetite with a lot of tummy issues. Her eyes tell a story more than any words she could ever say; they are glossy and you can see her pain. I am scared out of my mind. I am trying so hard to be positive and believe it is nothing, but I can't help it, I am scared.

Her pediatrician called me tonight and said she finally got someone in oncology, but they completely dismissed her concerns. We want to have a lumbar puncture done just to make sure there aren't cancer cells lurking in her spinal fluid causing her headaches. But, oncology doesn't want to do that. They think it's a virus - oh how I hope it's a virus. I just don't understand why it's such a big deal to just be sure. Why can't they be proactive instead of reactive? Our pediatrician also tried to get in touch with Kaidan's orthopedic doctor, but she had no luck there, so I guess we will be waiting until Tuesday, unless things get worse. The pediatrician advised me to take Kaidan to the ER if her headaches or her ankles get worse over the long weekend. Otherwise, she will call me Monday after she tries again to get someone who will listen.

So, there's the story. I'll update again when we know more.

Happy New Year...

I don't have too much to update on, not much going on around here, but here's a little update anyway.

We had a great Christmas and a happy New Years. The kids were lucky enough to get most of what they wanted and it's was still a lot of fun waiting with them and experiencing all of their anticipation. I've cleaned up all the decor and now it's on to organizing and spring cleaning in January.

As far as health, everyone is doing well. All the kids got sick the week leading up to Christmas, and of course it hit Kaidan again on Christmas Day. She came down with a whopping fever of 105 and was sick for 4 days. I think once you survive cancer you should be exempt from sickness on all holidays :)

Kaidan is still taking the laxative a couple times a week and the medicine they gave her for the painful spasms she was having seems to work so she takes that before every meal. We will go back to the GI doctor in February to follow-up. I'm still hoping they will do more tests because even though the medicine is helping, it doesn't explain why she's having the problems and if she doesn't take that medicine the pain is right back. I don't think the laxative is helping anything, so I don't think she is constipated and her H Pylori test was negative. Kaidan will also be getting some custom arch supports to help her ankles when we can afford the $250 cost that the insurance won't cover because they don't believe they are medically necessary. She is also going to see a therapist next week for her anxiety and they are going to work on some coping skills so Kaidan can enjoy her life the way she deserves. She has her next oncology check-up on the 17th.

Other than that it's just life. Plain old boring wonderful life. I love that we didn't have to go to the hospital on Christmas day for Kaidan's fevers, I love that her body is capable of healing itself, and I love that today all my kids are healthy and happy.