Tuesday, February 22, 2011


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!!

Friday, February 18, 2011

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.