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.

GI doctor and a haircut...

Kaidan had her appointment with the GI doctor today. First, let me say that I like this doctor a lot. He sits down, talks to Kaidan and to me, and spends TONS of time with us. We've only seen him twice, but both times he spent over an hour talking to us! Second, let me say that he is a different nationality, and he definitely has some different mannerisms than I would like, but that isn't a bad thing - he's just a little "odd" to me. Third, let me say that I am really confused on what happened today - I'm not sure what I think about the next steps we are going to take.

The doctor decided that he thinks Kaidan's pain is caused from her extreme anxiety and that she is constipated. I know this is a private subject, but you are welcome to stop reading if you don't want to hear it. Now, I get that anxiety can cause stomach aches and other related issues - but Kaidan's "episodes" are not simple stomach aches. They are 20-30 minute time periods of excruciating pain. It's a horrible thing to witness. And I don't get the constipation thing at all. Kaidan has bowel movements several times daily, with no trouble, and they are bad. I mean, this girls is NOT backed up. We can't venture too far from a toilet EVER. So now he has prescribed a laxative and I'm thinking the next 2 weeks are going to be hell. Sorry for the word use, but seriously - we are giving this teeny, tiny girl who already can't go too far from a bathroom a laxative? Seems wrong to me. But...that being said...I am going to try it. I won't say that it can't get any worse, because I'm thinking it can, but we'll give it a go anyway. He felt something in her stomach, and he thinks it was backed up poop. I'm now thinking what if it's not? Oh boy...

So, the plan is to do another stool study to look for the H Pylori, start her on laxatives and eating more fiber (YIKES!!!), starting her on a prescription to help with what he called functioning pain (this is from the anxiety I guess), and follow up with him by phone in 3 weeks and in person in 3 months.

I guess this is a start. Now, on to the next problem ...neurology, dermatology, psychiatry, orthopedics...where to start, WHERE.TO.START! :)

On a side note... My mom gave my sisters and I all haircuts today and so I got myself a new do and had a full circle moment. I haven't had a haircut in over a year. I told the stylist I'd like it short, but not too short and we decided what length it would be. She said just a couple more inches and I could have donated to Locks of Love...so...I DID IT!! I chopped it all off and donated a hefty chunk of hair! So exciting - I've wanted to do that for a really long time, so I'm happy :)

Speaking of donating - wouldn't a great thing to do this month be to donate something you've got that someone else desperately needs? You would be so proud of yourself :) Join the national bone marrow registry or donate blood products at ARUP or your local red cross. Here's some information that I copied from some other blogs that I follow:

This Christmas, here's two relatively simple, FREE gifts you can give your fellow man:

1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Right now I know of at least 3 different families going through or getting ready for a bone marrow transplant - and that is just ones that I know, there are SO many others. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!
(I signed up a couple of years ago and I hope I get to be a match in my lifetime. Everytime I start worrying if it may be painful I just think of how many bone marrow biopsies Kaidan had. She never complained of anything more that a sore hip for a couple of days. If she can do it - so can I, and so can you!!)

2. Donate blood at your local Red Cross or ARUP. A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day. According to the American Red Cross: every two seconds, someone in the US needs blood. Kaidan had over 40 blood and platelet transfusions during her treatment. And there's millions of other cases where people need blood. It is life-saving, our cancer buddy Skyler needs platelet transfusions daily.

Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.
You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)Please, if you possibly can, get out and donate this holiday season.
It's one of the best gifts you can give.
This Christmas, GIVE LIFE!

**feel free to copy and paste this post onto your blog (I DID!)

December check-up for Kaidan...

Kaidan's blood work all came back good yesterday. She is growing and has finally hit the 20th percentile in weight!!! Her height is average for her age, but she is definitely a skinny mini. Everything looked great at her check-up, but we have a hefty line-up of specialists to get her in to see in the next little while...and I was hoping that 2011 would be the year that we'd finally not have medical bills...yeah right!

She needs to see a dermatologist for her many, many warts (this all started from her compromised immune system while on cancer treatment), a cardiologist for her continuing chest pain (her echo last month was normal, but the doctor wants a stress test done because she continues to have chest pain that radiates down her arm and it is usually associated with activity), an orthopedist for her ankles (her avascular necrosis was improved as of her last MRI in 2009, but her ankles roll inward and it's getting worse and not better, so it needs to be fixed before it's a huge problem - which it will be if we don't do anything), and a therapist for her anxiety (Kaidan is so uptight about everything. She can't even have fun with us because she is always worried about crazy things, so the doctor would like her to learn some coping skills now, rather than later. I also have quite a large family history of depression and anxiety, so it's better to get this under control now). She also has an appointment with GI Thursday (I am going to demand a scope because nothing wrong is showing up looking from the outside in, so it's time we look from the inside out. We will also be talking about removing her gallbladder) and a neurology appointment on the 15th (this is for headaches that seem to be getting somewhat better, but it takes months to get in to them, so I will be keeping this appointment and asking them if they have any ideas what could be causing the headaches she does get).

And we thought this all ended when she completed treatment in 2009... have I ever mentioned that I hate cancer?