Saturday, March 27, 2010

it's weighing on my mind...

Okay, I didn't say everything that was on my mind on the last post because I had already rambled enough, so here goes...

Have I ever told you that I HATE CANCER?? Especially childhood cancer! Kids should not have to go through what cancer makes them go through. And it's really not just cancer, it's anything that makes a child suffer. It's just heartbreaking. I read a lot of carepage/caringbridge stories and this past couple of weeks many of the families I follow have been devastated by more bad news. One boy, Luke, is going through cancer a 3rd time, this time with no idea what more they can do. Elliott, he reminds me so much of my brother, is in a medically induced coma to try and let his body heal from many things, some caused from previous cancer treatment. Meaghan, also in an induced coma, has endured this for 7+ years; she recently faced a new cancer diagnosis while she was being treated for a different cancer. She got great news that her bone marrow was 100% donor and within a week or two is now in the ICU fighting for her life. JP doesn't have cancer, but he has spent months and months on end in the hospital fighting. There are so many others that are unsure of what their futures will bring, whether they are waiting for test results or just living the "after cancer life" like we are. There are many more who now count the days since they have physically seen or held their child...I can't imagine that.

I am so glad Kaidan is still here, I feel blessed and lucky...sometimes I think I even feel a little bit of survivors guilt. We do still have daily reminders of what we have been through...daily reminders of how quickly things can change. Kaidan's stomach issues are bad, and I cannot seem to get the thoughts out of my head that it's more than what we are finding right now. We have no idea what problems may arise in the future because of the poisons we pumped into her little body.

It's a daily struggle to remember to enjoy the moment and to stay positive. We do our best to be thankful for everything we have, but I'm not going to lie, there are times when I am not thankful. I am angry that this is what our life has become, that I have a habit of putting my hand on Kaidan's forehead checking for a fever, that I can't sleep because my mind can't shut off the "what ifs". I'm mad that Nate has had to juggle work/home/hospital time for the last 3 years. I'm angry that Kaidan has had to do things that no one should ever have to do, that she has bravery beyond her years. I'm angry that she gets completely wiped out, just from shopping or playing for half an hour. I'm angry that Preslee has witnessed all of it, I'm sad that she has grown up too fast, not because she wanted to, but because she had to. I'm sad that she has had to take on more responsibility than most 13 year olds have. I'm sad that our boys know what puke buckets are for, that they don't think it's weird to throw up all the time or to always feel sick. I'm angry that to them it's normal to have to go to doctors and hospitals on a weekly basis. I'm angry that we can't breathe because of the financial toll illness puts on a family....

I guess maybe I'm a bit more angry than even I realized, but there are still things that I am thankful for. I am thankful that Nate and I have a strong enough marriage to get through everything we've been through. I'm thankful that Preslee is an amazing daughter, that she has handled everything with grace and that she loves life. I'm thankful that the boys are normal (at least I think they are normal), that we were able to keep some consistency in their lives and that they love their sisters dearly. I'm thankful that both Nate and I have jobs that are understanding and flexible. I am glad that we have health insurance...I think...even though it's expensive. I'm thankful that Kaidan is sassy, brave, strong, and feisty. I am thankful that she has the most positive attitude and that she has not let cancer define who she is.

Since Kaidan's diagnosis I have wanted to raise awareness, but the past couple of weeks it seems to be all I can think about. Unfortunately, I don't know how to do that and I have a full plate already with just trying to keep a house clean and taking care of the kids. So, I can only do small things now, but one day I will do something BIG!!

Please support childhood cancer research. Please visit my sisters blog . Please visit other website links I have on this page. Please donate blood and sign up to be a bone marrow donor. Every little bit of awareness can get car magnets from Candlelighters, you can help spread the word. September is Childhood Cancer Awareness Month, we need that to make the news! Betty Crocker is doing their Stirring Up Wishes campaign again to support Make a Wish, please support them by purchasing their products and visiting their website to find out more .

If you read to this point, thanks for listening to me whine. I've found it is very therapeutic to vent, even if it's just to a computer screen. We so appreciate all the support and love that we have been given, thank you!

Thursday, March 25, 2010

We have had a fun couple of days. On Tuesdays in March the boys have been doing Itty Bitty much FUN!! It's just great to watch a bunch of 2-4 year olds running around with lacrosse sticks! For anyone who doesn't know Cash that well, he is a home body. He loves to stay home and just hang out. He has fun doing things, it just takes a little (sometimes a lot) of coercing to get him to actually leave the house, but once he gets where we're going he usually has a great time. So Tuesday morning I was getting the boys ready and this is the conversation Cash and I had:

Me: Come on Cash, hurry and get dressed.
Cash: Where are we going mom?
Me: To lacrosse so hurry up, we're going to be late.
Cash: I don't want to go today, my foot itches.
Me: Fine, we don't have to go.
Cash: Can we go swimming to that place what has the blue slide? (Yes, I meant to type "what". He always says "what" when he should say "that". It's so funny. He also thinks that tomorrow means yesterday. I cannot figure out how to explain that one to him.)
Me: NO...If we're going anywhere it's to lacrosse.
Cash: FINE mom...I'll go to lacrosse, but my foot still itches.

Isn't that great? He cracks me up every day. He has really had fun doing lacrosse and is now convinced that he is on a football team, a soccer team, and a baseball team. He always had some sort of game that started 3 minutes ago and because of me he is late. I have no idea what he is talking about, but for his own sanity I did sign him up for t-ball that will start in April. It should be fun. My pictures from lacrosse turned out too dark, but I did get a couple of Porter that turned out.

Tuesday was also Kaidan's first soccer practice! She was so, so excited. Porter and I took her, so Porter got some good playground time in too.

This is what Kaidan looked like on the way to practice...she also fell asleep on the way home.

Today my sisters, dad, and Steve took the girls snowboarding. They were so excited to finally get to go! The boys and I drove up to watch them for awhile, so even Cash got in a little run! He is such a strange little man, on the way up there he was asking me if we were going to the snowy mountains or the desert. ??? He thinks he's Diego or something.

So with all of this fun stuff comes some crummy stuff too. You knew it was coming, right? Nate's car didn't pass inspection on Monday...bummer! He is currently driving an unregistered car with an expired drivers license. I'm pretty sure he's going to end up in jail :) Hopefully we can get both of those things taken care of this weekend, it's the new drivers license requirements that are holding us back on that. We can't find his birth certificate, so I'm waiting for a new one to come in the mail. The car is going to cost a bit of money, so I'm not real happy about that. On Tuesday the GI doctor called and Kaidan's tests were all normal except she tested positive for H Pylori. It's some sort of bacteria that can cause chronic gastritis. So she is being treated with 3 different medications for that and her prescriptions were over $200...double bummer. On Wednesday I was running late to pick Preslee up from soccer so I may possibly have been driving a little fast....I may also have gotten a speeding ticket...triple bummer. Oh well, life is life.

I had several things I wanted to mention as far as our cancer life goes, but I've rambled on enough, so maybe in a couple of days I'll get to that stuff, but look at me journalin' it up...pretty exciting!

Sunday, March 21, 2010

a great weekend...

I have so many new pictures, so I'm hoping to get my shutterfly page updated soon, but I'm going to put a couple from this weekend on here. I really need to be better at taking pictures...and at journaling...etc, etc, etc....

We had a great weekend, but the kids stayed up too late :( hopefully they'll recover by getting in bed early tonight. Friday I took the boys to Ogden and we hit the Treehouse Childrens Museum with Janae and her kids. The boys absolutely love playing with their cousins. I took some pictures but they were all blurry...I had the camera on the night setting. Of course! The afternoon was spent running around doing errands and such, Kaidan got her new soccer uniform and Preslee needed new cleats. She also talked me into buying her some goalie gloves. They are both so excited about spring sports!!! All the kids are loving having some nice weather and being able to play outside. I have to admit, I'm loving it too! It's so nice to have them dead tired by the end of the day :)

Saturday we went to see Alice in Wonderland with HopeKids. We all liked it a lot, it was a great movie. Then we went to my sisters lacrosse game at Westminster. She had an awesome game and scored 6 goals. It was such a nice day and again the kids had a blast being outside. Kaidan had a rough evening, with a low grade temp and lots and lots of tummy pain, but she seemed better today. I'm hoping to get some of her test results early this week.

Today Nate took the kids fishing in the morning and then we had a family party. Again, outside all day! We are loving it!! We played lacrosse, soccer, and barbecued! It was a great weekend.

Wednesday, March 10, 2010

another check-up...4 months off chemo!!!

We had a very long day at Primary's yesterday. All in all it was a good day though. The day started with Kaidan getting her labs done. She had to be fasting because we were checking her glucose, which was great. I'm not sure what is causing the continued cloudy vision, but it isn't diabetes, which is awesome! All her other labs look great, just a couple of liver function labs that are off, but only slightly, so it's really not a concern at this time. We also drew an iron and ferritin to see if those are normal. Her ferritin was extremely high in the past, but we haven't checked it for awhile. I haven't received those results yet. So, all in all, blood looks great. From a leukemia standpoint she is doing very well. She'll have another check up on April 6th.

We also had our long awaited visit with the GI doctor. Kaidan has struggled so much with her stomach problems since her diagnosis of leukemia and it hasn't gotten any better. We had hoped that as more and more time passed since her last chemo she would improve, but that isn't happening. This doctor was great! He took a good long look at Kaidan and asked her many, many questions. He also listened to me which is a plus. We had a test called a hydascan back in February. Clinic told me that this test came back with no abnormalities, but unfortunately they misled us. Her gallbladder didn't empty, which is an abnormality and can cause pain. We are also going to run more blood tests and stool tests to check for inflammation of her intestines, celiac, colitis, infection, etc. If those tests come back normal we will do an endoscopy to look at her intestinal tract, etc. If all of that is normal then we will remove the gallbladder. That is going to be our last resort, as we could go in and remove it now because there is some abnormality there, but it wouldn't necessarily stop her problems. The doctor felt like this was probably not the source of her problems, so we will only do that as a last resort.

It was a long day, but I was satisfied with our new plan (but very disappointed in the oncology clinic for not telling me that there was some abnormality a month ago). Kaidan deserves to live a normal life. Right now her stomach problems are interfering with this. I hope we can get it taken care of soon! Other than all of that she is doing well. She is going to play spring soccer and she absolutely cannot wait!! She is so excited.

Preslee is doing well, she will be playing with the same soccer team this spring and will also be doing lacrosse if the two schedules don't interfere with each other. She loves playing sports and is very good at it.

The boys are doing great too. They both just started an itty bitty lacrosse program that is just awesome. It is complete chaos, but so fun to watch. They are having a lot of fun and it's a good way to help with the spring fever we are experiencing. It seems like we have a couple of good days that they can play outside and then it's back to wet weather and they are couped up again. They absolutely love being outside...all of them do.

The dog....well, what can I say...he's a dog named Goose. He is insane. He still eats everything, not so much chewing, just completely consuming everything in his path. He's still wild as ever, and very easily excited, but hopefully next weeks neuter and a couple more months of puppyhood and we can get past that. Hopefully we'll have the funds to do some good training classes with him too. His damage to the house is getting repaired nicely. It's taking us a while because we are doing all the work ourselves with the help of our families, but it's looking good and we are making progress! I think we should have it all done in another month or so. Then, maybe, we can just sit and enjoy having a home of our own. We are looking forward to finally feeling settled.

I'll update more as we get results from Kaidan's stomach tests. Thank you all for the continued support and love. We really appreciate everyones continued concern for our family.

p.s. please visit and support my sister and childhood cancer!! she makes the cutest crocheted items and it would be great to start getting the word out about her website. childhood cancer is just awful. i read stories of other kids and it just breaks my heart. i wouldn't wish this life on's horrible for all involved. if you are able, please support us. thank you