Friday, October 30, 2009

the big PARTY...

If anyone who reads this website that would like to come to the party, but has not gotten an invitation, please email me for the party details. I have sent out the invites, but I'm sure I forgot some people...sorry. I tried to remember everyone, but I'm still thinking of people that I forgot. So, if you are wanting to come party with us next Saturday, Nov. 7th, drop me an email and I'll get you the info. Thanks!

Everyone is doing well and we're getting excited for trick-or-treating!!

Tuesday, October 27, 2009

flu shots...

Porter had his 18 month check up today, which was great. He's a healthy, happy boy! Then...everyone had to have flu shots. Preslee, Cash, and Porter all got the regular flu shot and the H1N1 shot. They were not happy, but they did well. The person who was the most unhappy was Kaidan, she had already gotten the regular flu shot at her last clinic visit, but since they had the H1N1 available today, I decided she may as well get it (after I called oncology and made sure it was ok). She threw a fit like I've never seen before, but in the end it was fine. On the way home she told me that she was just unprepared and that is why it was hard.

Anyway, it's all done now, so hopefully the flu doesn't get us this year. Especially Kaidan, she deserves a year off.

Monday, October 26, 2009

chocolate pudding...

Porter thinks he's a big boy now...I guess he kind of is. He has decided that only he can feed himself. We are no longer allowed to help. So yesterday he had a snack of chocolate pudding. He had a great time, and I think he might have even eaten a little bit...

Thursday, October 22, 2009

heading home...eventually...

Kaidan's counts are good. Her ANC is actually 4700, so it's good and high. We will be heading home as soon as they come in with discharge papers and remove her IV.

They wanted to do a nasal swab to rule out the flu, but she doesn't have any flu symptoms, so I said NO. She's had that done so many times, and it's not a fun procedure, so there is no reason to do it when she doesn't have symptoms. After being here all night, she'll probably get the flu in a few days anyway and then they'll have to do it...I'm joking, but there is some truth to that. You sit and wait with hundreds of sick people and then when you get to your room the doctors, nurses, techs, people stocking supplies, residents, people making sure you are going to pay them if your insurance doesn't, people just making sure it's not an empty room...I'm sure you get it...anyway, all these people go into the rooms of sick people and then into your room and you are bound to get something!! We'll hope not, but I wouldn't be surprised. Today was seriously CRAZY in the ER. I have never seen so many people here. It was like a scene from the movie Outbreak, everyone wearing masks. It was surreal.

Anyway, we're headed home, so I thought I'd let everyone know that we are good. We'll just keep our fingers crossed that the fever doesn't come back tomorrow night!!


We are currently sitting in the ER at Primary's. Actually we are in the radiology waiting room because the ER is FULL, and I mean FULL!!!! We are here because Kaidan came in from playing outside in the leaves and gave me a hug...of course, she was hot. I had her take her temp and it was 102.1. So, they said she needed to come in since she hasn't had labs in a couple weeks and she is still on treatment. So here we sit and here we wait. They told us we will get the first available room since she is immunocompromised, but it still could be a 2 hour wait.

This is insane...

I'll update more in awhile

Tuesday, October 13, 2009

moving on...

Well...what can I say? I can say that I have an amazing daughter. All my kids are amazing, of course, but today was Kaidan's day. She is so, so very brave.

Our day started with clinic at 9:00. I was extremely disappointed when the doctor that came in to see Kaidan was not the doctor we have requested to see. My initial feeling on that is that we put our feelings out there, we gave the proper people all of our concerns, and for what? Kaidan's doctor isn't even going to be there to answer all of the questions we have as we start this new phase of our journey? She's not going to be there to congratulate Kaidan for a job well done? So...I made my opinion heard. I complained. And, although we still didn't see our doctor, she did come down the the surgery waiting room to see us and the administration came down to see us in the recovery room to try to make things right. We'll see how it goes from here on out. I told the administration that I feel like this next year it will be even more important to us that we see the same doctor on every visit. Our trips up there will become fewer and farther between and I feel like it is very important for the doctor who treats her to know her. I will not tolerate seeing a different doctor every single month.

Anyway, back to the clinic visit. It went well other than the doctor mishap. Kaidan's counts were still a bit high, but much lower than they were last week. Her ANC was down to 2600, so that is good. They aren't going to increase her chemo anymore. After Kaidan had her chemo and labs done the staff brought in a beautiful quilt and some books and toys for Kaidan. They sang "Happy Off Treatment To You" to her. I don't think I've ever seen a bigger smile on her face!

After clinic we headed down to surgery. It was very hard to watch Kaidan walk away from us. She was fine right up until we had to part ways and then she became very sad and scared. She was crying and holding onto Nate, it was very hard to watch. (Jennette, I didn't see your message until just now about going back with her :( ) She finally mustered up the strength to go on with the doctor; again, I can't tell you how brave she is. A child shouldn't have to do that. The surgery went well, it took about an hour for the actual surgery, but Kaidan decided to take a nap afterwards, so it was another 2 hours before she was finally awake enough to go home.

So here we are. We are done. Kaidan will have oral chemo until Nov. 5th, but we don't have to go back into clinic until the first week of December. That's the longest we've ever gone without going up there...weird.

I'll update more later, but thank you for all the thoughts, prayers, and concerns. I took many pictures today, so I'll try to get some posted.

big day tomorrow!!

It's finally here. WOW!! I really can't believe that this day is already here. In the beginning months of treatment you feel like this day will never come. Towards the end of treatment you start seeing some light at the end of the tunnel. I don't even know how to describe what we feel now. We are excited, scared, worried, nervous, happy, and pretty much any other emotion you can name. It's weird.

I think because of the fever Kaidan had on Friday (which continued off and on for most of the weekend) and the very high blood counts she had, it has added a lot of fear to what I was already feeling. I am still super excited, but there is definitely more anxiety. I'm so worried about getting her labs done tomorrow. I don't know what to expect. Of course, I mostly expect them to be back to normal, but a part of me is nervous that they won't be. It's a hard thing to explain. Every scenario has played out in my mind, and I imagine this will be the case every time we go in for blood draws and check ups after she is all done.

Kaidan is nervous for tomorrow. She doesn't want to have to walk away from us as she goes to the operating room. Unfortunately, this isn't like a back poke where we can stay with her until she falls asleep. This will be difficult for all of us. I can't even imagine the fear she must feel as she goes into a room full of strangers. We have talked about it, she knows what to expect, she knows we'll be waiting for her to wake up and then we'll be right there with her, she has even done it before...but it's still crappy! It's amazing how even with all the greatness of being done with treatment there is still something that no child should ever have to endure. What I want to say is IT'S NOT FAIR!! We should be able to go with her. We should be able to hold her hand until she falls asleep, and then they can move her to a sterile room and do the surgery. That is how it should be!!

Even with all of this...I still know that we are blessed. We are so lucky that this day is here and that after tomorrow Kaidan will be one more step closer to completing treatment! That is a beautiful thing!!

The plan is for chemo in clinic first, then she has to check in to the operating room by 10:30. The surgery should start by noon and I think it's a relatively quick procedure. Hopefully we are finished by 2:00 or so. I'll update tomorrow night with all the details.

Thanks for all the love and support!

Friday, October 9, 2009

a fever...

Kaidan woke up early this morning with a fever of 102. We had a short visit to the clinic for the standard antibiotic and to check her blood counts. Her counts are insanely high. Her ANC has increased from 1400 on Wednesday to 6300 today. Her white count is over 7000. I'm nervous to say the least. I KNOW that the white count increases when you are fighting a virus, but I also KNOW that it increases with leukemia. They assured me that she is fine and she is just fighting something, so we'll take that for now. This is the highest I think her white count has ever been since diagnosis.

I'll update if anything changes; otherwise, it will be Tuesday evening when I'll post again. Thanks...

Wednesday, October 7, 2009

big days ahead...

I figured it's probably about time I update this thing. I feel like I haven't done it in forever! That is a good thing! No news is almost always good news. You'll have to forgive me if this update is long and all over the place. When I haven't posted anything for a long time there seems to be a lot more to say :)

Things are going really well. Kaidan has been having her weekly blood draws and her labs are good. They have increased her chemo quite a bit, I think she's at about 75% on both medications, so with that her counts have gone down substantially, but they are still good for a cancer kid. She had an MRI to check the progression of AVN in her legs. The oncology clinic said that it's improving, but that was all they said, so I called her orthopedic doctor to have him take a look at them, but he said that PCMC had locked the images, so he wasn't able to look at them. I now have to call and have those released to me so that I can get his opinion on them. I just want to make sure they look good before we remove her central line. By the way, the date for that surgery is next Tuesday!! Can you believe it?? I am a little nervous that they might postpone it because she has come down with a nasty cough the last couple of days and it seems to be getting worse, but I'm hoping it will clear up and she'll be good to go. I just want it done!! I have such mixed emotions about the whole thing that I think the only way to get over it is to just get it over with. Our life will be so weird without the weekly blood draws or the monthly IV chemo and the yucky stuff that comes with that. We are excited and scared all at the same time.

School is going well for everyone. Both girls are doing plays this month, which they absolutely love. They are both born performers, so it's a lot of fun for them. Preslee is doing great at soccer, playing goalie a lot of the time, but doing great at any position they put her in. She's a very athletic girl, so she's having a blast. Kaidan is still dancing, but it's been tough for her. Her legs have had a hard time getting used to going all day at school, so dance has suffered because of that. She still loves every minute of it and she also wants to play soccer next season. Cash is doing great in preschool. He asked me if I knew where the number 5 was and I told him I didn't. He looked at me like I was stupid and told me it is at his school! He's having a great time and loving his new friends and I think he likes the independence that comes with growing up. Porter...what can I say... He finally has teeth, 4 of them to be exact. He looks like a jack-o-lantern. He talks ALL the time, we just don't have any idea what he is saying. If you look up "cutest kid ever" in the dictionary, I'm pretty sure there is a picture of Porter there.

Next week will be here so soon, and November 5th, which is Kaidan's last day of chemotherapy, will be here quickly after that. I can't even describe what I feel. I've been humbled lately by other families and their stories. I know how blessed we are. Things could be so different right now, things could be so much worse. I have read too many stories lately of children being that are now free from their disease, leaving their families here to sort through the emotions of sadness that they are gone, but happiness that they are no longer suffering. I've read stories of kids that are still fighting, living a life of chemo and blood draws and hospital stays. Many of them have spent so much time fighting to live that it's the only life they really know. Every story hits home. This journey is not over. We will live with the fear of the unknown (which is also a fear of what we do know, if that makes any sense). Most recently, I read an update about a girl named Meghan. I have been following her story for a long time. She was 4 years old when she was diagnosed with ALL. She completed her treatment and was in remission for over 2 years before she relapsed in Jan 2008. Just two days ago, while in the hospital for fevers and low blood counts, she found out she now has a secondary cancer, AML. I am so sad for her and her family. She has been through so much already and now will have to have a bone marrow transplant along with more chemo. We need to figure out a way to get more awareness for childhood cancer. September was childhood cancer month, but there isn't much support out there for it. We need to see GOLD everywhere. You can buy anything you want in pink...and I mean can we get that kind of support in GOLD??? The treatments kids endure are terrible-sometimes causing secondary cancers-if there was more awareness that would lead to more funding, more funding leads to more research, and that would lead to better treatments!! There has to be a way!!

Okay, I'm done. I just want everyone to know that we are excited, but we are scared. We know we are in a great place now, we know that we are blessed that Kaidan is here and healthy, but we are so, so scared for what the future holds. We live each day to the fullest, we love every minute we have together, we are happy. The emotions are just very overwhelming at times.

November 7th is the date for our big PARTY!! It will be an open house from 6-9 p.m. I will post location information closer to that time. I will be sending out invitations, but if you don't receive one that doesn't mean you aren't invited!! PLEASE COME!! I am doing my best to remember everyone, but I think of someone every day that I have forgotten, so I have realized that I'm sure I'll forget a few. Please know that if you are reading this, if you love Kaidan, if you want to celebrate this happy time with us, then YOU ARE INVITED!!
I'll update again after the big Tuesday, the 13th of October!!