Wednesday, March 30, 2011

Long, long day...

Yesterday was a really, really long day. We left the house at 8:45 and didn't get home until 4:30. And we only had 2 doctor appointments!!! As most of you know, Kaidan has been struggling forever with stomach issues, and we have met with the GI doctor several times. Yesterday we saw him again. We sat in the waiting room of the GI clinic for almost 2 hours!! I was so mad! Once we got into a room we waited another 30 minutes before he actually came in. Anyway, last time we saw him he thought Kaidan was constipated and I was very skeptical. The whole issue we have is with pooping too much and always having tummy pain. Today he stressed again that he thinks constipation is what is going on. He wanted to do a rectal exam and Kaidan absolutely refused, so we opted for an abdominal x-ray instead. We are looking to see if she is backed up in there. I haven't heard back from him yet with the results, but if she does have stool throughout her colon and intestines we will do a clean-out and see if that helps. If that is not the issue then we will go in for an endoscopy. After the GI appointment, we saw the orthopedic doctor for Kaidan's ankles. They are causing her so much grief. Don't get me wrong, she still does as much as she can - she's trying to play soccer and do recess, etc. - but she pays for it when she does these things. Anyway, the orthopedic doctor confirmed that, from x-rays, it looks like the AVN (avascular necrosis) is back in the ankles. This is not good news. We are going to have an MRI tomorrow to confirm this and then we'll discuss what our options are. Something has to be done. I told the doctor that I don't want to do anything outrageous, but I do not want Kaidan living in pain like this anymore. It's absolutely not right - he agreed. So, what have we learned? Well, cancer is a cowardly, vicious beast. It doesn't go away just because treatment is over. It tortures and torments the cancer patient and their family - physically and emotionally. Why should anyone have to endure this, especially children? Chemotherapy saves lives, but not without a price. It leaves a trail of destruction everywhere that it has gone. I am so thankful that Kaidan is alive. I know of so many other families that are going through things I couldn't even imagine, and I am humbled by that. But, that doesn't make it okay. I want Kaidan to live the life the doctors promised - why do they promise things they can't control? They gave us false hope that we would be done - November 2009 was the end...but, we will never be done - this will never end. Even if she does get relief from all of her aches and pains (which I will never stop working for, by the way), we will never stop wondering and worrying. I'll update again after we hear from these test results to keep you all posted.

Friday, March 25, 2011

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.

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!

Tuesday, March 22, 2011

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!

Sunday, March 6, 2011

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!

Thursday, March 3, 2011

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.