Wednesday, December 9, 2009

Kaidan's check-up...

Kaidan had her check-up with oncology yesterday and everything went well. We will do it again next month. I had a lot of anxiety, more than I thought I would, but it went really well. All her counts are great and we are going to try an antacid to see if that will help her tummy issues. I'll keep you posted, but Merry Christmas!

Wednesday, December 2, 2009

Well, tomorrow Kaidan turns 8!! She is so excited. She is doing well for the most part. She's having a bit of trouble with her legs (ankles and knees) and she often has stomach problems, but she's going to school regularly and feeling pretty great!

I don't even know what to say about her upcoming birthday. I can't believe that she is turning 8! She's growing up too fast. We are lucky to be her parents and we love having her spunky attitude in our home (most of the time)! She is a good girl and we love her very, very much. We are so thankful that we are celebrating another birthday with her and we hope she has the best year ever!!

She has an appointment next Tuesday, the 8th, to have her blood counts checked and to see the oncologist. She will have monthly appointments for a year.

In other news, we are buying a house!! We are really excited and hope to close mid-December. It will be an unorganized Christmas this year, but we are so, so excited! I'll keep you posted.

I will update again after Kaidan's appointment.

Saturday, November 7, 2009

fun, fun, FUN!!!

The "end of chemo" party was a success! Everyone had a great time, especially Kaidan. I'm so glad that we are beginning a new chapter of life, chemo free.

We are so grateful to everyone of you that were able to make it to the party. We appreciate that so, so much. It was a lot of fun, so thank you! A BIG thank you to everyone who helped make the party happen as well. We couldn't have done it without you.

Kaidan's next check-up with oncology is the first week of December...I'm sure as that time nears it will be nerve racking.

Thanks again! We love you guys!

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. mysteejsuds@hotmail.com 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!!

what??!!??

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 anything...how 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 day...next Tuesday, the 13th of October!!

Tuesday, September 15, 2009

1 down, only 1 more to go...

Chemo went fine today. It was a pretty quick visit, which was nice because I had the boys with me. Kaidan's counts are great...in fact, they are increasing her chemo to lower them a bit. We are going to try a yogurt regime to see if we can control some of her stomach issues.

I really cannot believe that we are almost done. It's an interesting mix of emotions. I know I've said it before, but I'm scared! I really worry about the future for Kaidan and our family. I think that this is something that will never, ever go away. It might get easier or become less constant, but it won't ever go away. The doctor assured me today that everything I'm feeling is completely normal. It will definitely be a different life for us when we don't have to run to the ER for a fever!! So, the plan is for an MRI the 12th of October to check on the progression of AVN in Kaidan's legs, IV chemo the morning of the 13th, and then surgery to remove her port that afternoon. Then, she'll take oral chemo until November 5th. After that she will have monthly blood draws for a year.

BIG PARTY...Saturday November 7th...open house from 6-9 p.m....more info soon!!! Please save this date if you can. We want lots of people to celebrate with us.

Monday, September 14, 2009

It's a Monday...

After Kaidan's blood counts dropped they shot right back up!! At last weeks blood draw her ANC was 3100. More than doubled from the week before. It's day 3 of school and she came home sick, but we're getting used to this constant stomach trouble. Chemo tomorrow...only 1 more to go after that!!!

BIG PARTY...Saturday November 7th...open house from 6-9 p.m....more info soon!!!

I'll update tomorrow after chemo.

Wednesday, September 2, 2009

this week's blood counts...

Kaidan is doing well. Her ANC has dropped from over 3,000 2 weeks ago, to 2,500 last week to 1,400 this week...AAAAAGGGGGHHHHHH!!

I thought we had finally gotten her counts under control. Oh well, we'll keep our fingers crossed for no fevers and check her counts again next Wednesday.

The ducky derby was fun!! We didn't quite meet our goal, but we were very close. A BIG THANK YOU to everyone who helped us out with that. I know times are really tough right now for everyone, so thanks to you all. I promise I won't ask for money from you all for awhile:)

The planning for our "end of chemo party" is well under way. It will be the evening of November 7th, that is a Saturday. Please save that date. We really want this to be a great celebration! It's a very exciting thing for us all and we want to share it with everyone who has been a part of our lives during this long journey.

I have many, many mixed emotions about the months coming up. I am so, so very glad that we are coming to the date when Kaidan will not have her central line and, soon after that, the day when she will no longer have pills to take every night. I am also so, so very nervous about what that will be like. It's impossible to understand unless you've experienced it, but it is a weird feeling, there are no words to really describe the many emotions you can feel all at once. The fact that she will have nothing going into her body to stop the cancer cells from growing is SCARY!! As much as I hate chemo, I hate cancer more. Anyway...enough about that. The end is near and we are SUPER EXCITED!! We hope that you will all be able to stop by our party and add some fun!!

I'll update next week after blood counts. Thanks again for all the support!!

Thursday, August 27, 2009

ducks, ducks, ducks...

The deadline for buying ducks is this Friday. We are almost at $700. I have some cash I need to turn in and I need to buy a few myself. If you can, please support us. Thank you!!

Copy this link to go directly to our Make a Wish page:
http://www.kintera.org/faf/r.asp?t=4&i=318740&u=318740-260812356&e=2605314071

Saturday, August 22, 2009

new pictures and ducks...

I have almost finished uploading tons of new photos to our picture site:
www.thesudburyfamily.shutterfly.com
Check them out when you get a chance.

Also...we are on the final stretch to reaching our goal of duckies. Our goal is $1000 and we have sold about $600. That is AWESOME!! Thank you so much to everyone who has supported us. If you haven't yet, and you are able, please sponsor a duck, they are $5 each. You COULD win a car, and you WILL be helping to grant wishes for kids with life-threatening diseases. The link to buy a duck is:
http://www.kintera.org/faf/r.asp?t=4&i=318740&u=318740-260812356&e=2605314071

Thanks again for all the support.

Tuesday, August 18, 2009

FINAL CHEMO with SEDATION!!!

Today was a big day. Kaidan had her last chemo with sedation!! Everything went well. She was nervous, probably because it's been a couple months since she has had to be put to sleep and have the back poke; but, she did great!!! She told me at one point that if she didn't get something to eat RIGHT NOW, she was going to die in the next 100 seconds. She's still alive, so I guess I got her food fast enough.

She now has 2 more IV chemos on Sept. 15 and Oct. 13, and then she will be on oral chemo until Nov. 5. Because this date has been moved back, we are changing her "end of chemo party". I don't have an exact date yet, I'm waiting to re-reserve a few things, but hopefully it will be either the Friday or Saturday after the 5th. I'll update again as soon as I know for sure. She will also be having surgery on Oct. 13th to have her port removed. After that they will just draw labs through normal pokes on her hand or arm. She's not excited about that, but once the port is gone, the risk of infection is also gone, so when she gets a fever we can treat her at home and she will not have to go to the hospital. That will be AWESOME!!

Kaidan's counts were great again, her ANC is over 3,000. For me that is fabulous, but for the doctors it is too high. They are increasing her oral pills a little bit and we'll keep doing weekly blood draws to monitor her reaction. I'm really hoping we can get through the next couple months with no fevers, no ER visits, and definitely no admits. Overall, Kaidan is doing amazing. She feels pretty good, she looks great, and she's able to do more and more things that a 7 year old should do. She's super excited about the party, and wants to invite everyone; all of our family and friends, all the nurses and techs, but not the doctors!! I thought that was funny. She cracks me up.

Everyone else around here is doing good. Preslee's electric scooter was stolen off of our back patio while we were at the lake last time, so she's been a little nervous to sleep downstairs alone. I hate that people do stuff like that. It's always a bigger deal than just a stolen scooter (which by itself it a big deal to the 9 year old that it belonged to). It really makes you feel violated and has a deeper psychological effect than just an item being stolen. Cash is awesome, and Porter is a bruiser. He is always banged up and black and blue. He's definitely a boy!!

School starts after Labor Day. Cash will be starting preschool this year...WOW...Preslee will be in 4th grade, and Kaidan will be a big 2nd grader. They are excited and, I must admit...so am I. It will be nice to get a little bit of routine back in our lives.

Thanks for all the love and support. I'll update again with a party date.

If you are able, please follow this link to buy a ducky to support our family as we try to help the Make a Wish Foundation of Utah grant wishes to kids with life-threatening illnesses.
http://www.kintera.org/faf/r.asp?t=4&i=318740&u=318740-260812356&e=2605314071

Tuesday, August 11, 2009

Can you help us reach our goal??

Follow the link below to support our family as we try to help the Make a Wish Foundation of Utah grant wishes to kids with life-threatening illnesses like Kaidan.

http://www.kintera.org/faf/r.asp?t=4&i=318740&u=318740-260812356&e=2605314071

For every ducky you sponsor ($5 each) you will be entered to win a NEW CAR!!! It's a great cause. The Foundation granted Kaidan's wish shortly after she was diagnosed with leukemia.

If you are able to help us out in reaching our goal we'd be very appreciative. Thanks!!

Thursday, July 23, 2009

FINALLY...

Kaidan’s chemo went well on Wednesday. Her counts are good, her ANC dropped slightly to 1500, but that is still great for her. She always has stomach issues for a week or so after, but other than that she is doing well. We had a meeting with the management of the Hem/Onc department at PCMC and discussed all the problems we have had. It went very well and I think Nate and I both feel better just knowing that they know. Hopefully things will change a little bit. We did get a new doctor, Dr. Wright. We are really happy about that because she has always been very pro-active. She is the doctor who finally scheduled an MRI for Kaidan’s legs, she is the one who told us about the enzyme testing for Kaidan’s low counts, and she is the one who prescribed the miracle anti-nausea medication when Kaidan was struggling with the tough chemo. This alone should make our last 4 months run more smoothly than the previous 24. Next chemo is Tuesday, August, 18th. This will be Kaidan’s FINAL back poke. Then she’ll have 2 more months of IV chemo and it will be party time!!

We have the party scheduled now (this should be the FINAL date change) for Friday, October 23rd. Please save that date, even if it’s just a few minutes to make a stop in to our party and tell Kaidan hello. I am hoping this will be a great event!!

It is also time for the Ducky Derby for the Utah Make a Wish Foundation. We have set a goal of $1000 again this year. Each duck is $5 and comes with a chance to win a car. Please support us, every $5 donation helps. You can donate by going to the Make a Wish website www.makeawishutah.org and clicking on the Ducky Derby link. Then click support someone you know who is selling duckies and search my name, Mystee Sudbury. We are so thankful for all the support we received last year, please help us out again…$5 and you could win a new car (and have the satisfaction of knowing you are helping to grant wishes)!!

Thanks again…We love you all!! Hopefully I won’t need to update until August 18th. Look for new pictures on our shutterfly website www.thesudburyfamily.shutterfly.com. I’ll be trying to get those up in the near future. I’ve got some cute ones from the last couple of weeks.

Friday, July 17, 2009

good counts and ear tubes...

I have been lazy in the updating department...sorry.

Kaidan had labs drawn Wednesday and her counts are still great!! Her ANC stayed at 1700. Maybe...just maybe we have found the right dose for her!

We had yet ANOTHER issue up at PCMC. To make a long story short...I went up on Thursday to pick up some of Kaidans meds and I could tell the pills were not her normal pills. It turns out that the pharmacy gave us pills that were 2 times the dose they should have been!! So, we will be having a conference next Wednesday with the management to discuss all of our problems, concerns, thoughts, etc. I hope it goes well.

Porter had tubes put in his ears today. He did great. He was cranky when he woke up (I believe because he was cranky when he fell asleep), and he's still quite sleepy, but he's doing good. I hope this is the answer to his never ending ear infections. (I asked the nurse yesterday if we would get to stay with Porter until he had been put under and was asleep and she said yes, but as it turned out we only got to walk him to the corner and then he went the rest of the way with the anesthesiologist...crying.)

I cannot begin to explain how excited I am to be done up there. I don't know that we could handle much more.

Chemo is next Wednesday, the 22nd. I'll update again after that.

Wednesday, July 8, 2009

wednesday blood counts...

Kaidan's blood work looked good again today. Her ANC dropped a little bit more, down to 1700, but that is still great for her. Her hematocrit was 39. I was surprised to see it that high because she's been so tired lately, but I guess we can blame it on the hot weather and late nights.

We are heading to the lake this weekend. We have a family reunion Saturday and we'll spend the rest of the time waterskiing and having a great time in the hot sun.

I was thinking back on the 4th of July 2007. That was the day Kaidan got to come home after being diagnosed. WOW!! Shortly after that we went to the lake with Kaidan puffy from being on steroids and covered in plastic wrap to try and keep her PICC line clean and dry. We didn't get to come home from that trip, instead we had to go to the ER for a fever Kaidan got on the drive home. I can remember the feelings...being a "new cancer mom", scared of just about everything, and having no idea what the future would hold. That is when we learned to live for the moment. I'm so, so grateful that we are here, 2 years later, getting ready to head up to the lake. This time, we won't have to wrap Kaidan in Glad Press and Seal, she'll be able to swim with no worries. She isn't swollen from steroids (but I'm sure she'll still be begging for bacon! That's one side effect that didn't go away when she stopped taking those crappy things.) We can only hope that we will get to come straight home when we are finished having our fun; a weekend with no fevers would be absolutely FABULOUS!!

I'll update again next week.

Tuesday, July 7, 2009

blood counts and ear tubes...

Kaidan is doing well. She has been extremely tired the last few days, but I'm hoping it's just from the hot weather and late nights. She hasn't had any more fevers.

I received a call from oncology yesterday and they wanted to know what dose of chemo she was on. They had conflicting information in their notes and they weren't sure what we were doing!! I can't believe the mistakes they make up there. I'm glad that I'm pretty on top of it, otherwise who knows where we'd be. They also wanted to increase her to 50% (they thought she was still at 25%), but I said no. Her counts are dropping, and just because they are still a little higher than they'd like (Kaidan's ANC was 1900, down from 3200, but they want her between 750 and 1500)I don't think we should jump to increasing it with as sensitive as she seems to be with the higher doses. Anyway...we are drawing labs tomorrow and we'll go from there.

Porter is going to be getting tubes in his ears next Friday, the 17th. This should relieve him from his constant ear pain and infections.

We are now planning the "PARTY" to celebrate the end of a very, very long 2 1/2 years on Friday, October 16th. I'll update with more information soon...

Wednesday, July 1, 2009

popsicles and blood counts...



First of all...check out this picture!! I absolutely LOVE it!! It was my sister's idea to take it yesterday afternoon when we were all outside eating popsicles. It doesn't get any better than this!!

Secondly...Kaidan's counts are still great, however, they are dropping. Her hematocrit (healthy red blood cells) and platelets (clotting) are great at 36.2 and 315 respectively. Her white blood count was above 4.0, but it's now at 3.4 (still really good for a cancer patient), and her ANC has gone from 3,200 Sunday morning in the ER to 1,900 today!! That is the count we watch the closest. It is Kaidan's immune system. 1,900 is a great number, the doctors want it to be around 1,500. If it gets below 500 she is automatically inpatient if she gets a fever. I'm hoping her counts will stabilize and they will be great again next Wednesday, but this is a very familiar trend and I'm worried that she is going to bottom out because we increased the dose of her chemo...remember, this chemo is a delayed effect drug, so it takes about a week for it to affect her counts. She just started it last week, so next weeks labs will be the true test. I'll keep you posted, in the meantime have a wonderful 4th of July!!

P.S. We are in the beginning stages of planning an "END OF CHEMO PARTY" (I'm trying to think of a different name for it). I want this to be a celebration for Kaidan, for all she's been through (simply amazing that she still smiles), but also for the rest of us. I would like to celebrate the simple fact that we made it, we are still sane (I think), and we are a closer family than we ever have been! I want it to be for Preslee, for the awesome sister she has been. And, last but not least, I want it to be for all of you who have supported us, loved us, and helped us through the hard times!! We couldn't have done it without each of you, so...THANKS!! We have tentatively set it for the 17th of October, but that is the deer hunt I have just learned, so we might be changing it, but for now that is the plan. Put it down on your calendars and I will be giving more info as we plan it.

Sunday, June 28, 2009

Second verse, same as the first...

About 3:00 in the morning I headed up to PCMC with Kaidan. She had another fever, 102.8. We got home around 8:30. Her counts are still great, even a little better than yesterday. I'll update more soon.

Saturday, June 27, 2009

Emergency Room and Irish Dance Feis...


Kaidan danced in her first Irish Feis (pronounced "fesh") today. You would never have known by looking at her that she had been in the ER until 3:00 this morning...
Yes, you read that right. When I was heading to bed I decided to check her temp because she had been a little warmer than usual all day and sure enough...she was over 101. I took her up last night and Nate stayed home with the others. We were there for about 4 hours, so that's not too bad, considering it was the ER. Her counts were still good, so we were able to come home after they gave her IV antbiotics. Her ANC went up a little bit to 2900, and the rest of her counts went down, but they were all still in the normal range. If she gets a fever after 1:00 a.m. we will have to go back....
Kaidan was telling me that she doesn't like going to the hospital, but she does like going to the hospital. She was saying that she enjoys getting some one on one time, and lots of attention from doctors, nurses, visitors, etc. She was being so funny. I was thinking this morning about how it kind of is nice, just because when you go up with her you get to see a different side of Kaidan. She's so mellow (usually) and she has a different sense of humor about her. I'm sure it's just because she's alone and not competing with the others for attention, but in a weird way, it is nice.
The Feis was great. Kaidan had a huge support system, as usual. A big THANK YOU to all of you who were able to make it. She loved every minute of it. Her dance school, Crawford School of Irish Dance, did a "special" for Kaidan, they are donating all the procedes from that dance to us and they made her a beautiful quilt. I don't have the words to say how grateful we are for that. It not only made Kaidan feel incredible, it makes Nate and I feel truly humbled. We are so appreciative, I don't think I could ever come up with the right words to express what it means to us. Not just this, but everything that our family and friends have done for us. We are so thankful.
I'll update again soon...

Wednesday, June 24, 2009

chemo day!! only 4 left...

First of all...Sadie Huish is almost finished with her battle. Her hospice nurse told her family today that she has about 48 hours left on Earth and then she will be living forever with Jesus and her Heavenly Father. Please pray for her family. I am so sad, even though I don't know them personally, Nate and his family do. It's heartbreaking. I hope it's okay that I post her website here. If you'd like to visit it, just to know who you are thinking of and praying for.

www.sadiehuish.blogspot.com

While I am silently celebrating how close we are to the finish line, I am also mourning for another family. It's hard being part of the cancer world. I cannot even imagine the emotions they are feeling.

Today at clinic went well. Kaidan's counts are still very high. I am glad, because I think it saved her from the flu that went around, but they are now going to increase her chemo. I'm a little nervous, but we'll be doing blood draws weekly to monitor her. I hope she tolerates it well. It's a catch 22, because I do hate chemo, but I hate cancer more. I want to give her the best chance at full recovery, and it's a little scary to think that she might not be getting enough chemo to do that. Hopefully she'll continue to do well with this new dosage. She was on 25% with 2 chemos, and we are just increasing one of them to about 42%. They'll increase the other one based on her blood counts in the next couple of weeks. We have next months IV chemo, sedation with a lumbar puncture, chemo in the spinal fluid, and IV chemo the next month, and then 2 months of IV chemo. After that she will be done with chemo!! I can't believe it is that close. It's very EXCITING!!

Kaidan did fall yesterday while she was riding her bike. She banged herself up pretty good and really hurt her wrist. It's not broken, but she's in quite a bit of pain. Hopefully it will start to feel better in the next day or two.

Porter has another ear infection (both ears), so he's on an antibiotic to get him through until July 6th when he will see the ENT doctor.

I'll update again soon.

Wednesday, June 17, 2009

doing good...

Kaidan is doing great. She hasn't gotten sick. Her only complaints are the stomach issues that seems to go hand in hand with her chemo schedule. PCMC called yesterday and said they had changed their plans and they will now be treating all the kids that are still on chemotherapy that were at Camp Hobe with prophylactic Tamaflu. I'm glad about this, even though I think Kaidan is fine, I would always rather be safe than sorry. So, I have to run up to Primary's to get the prescription today and get her started on it.

Everyone else is okay. Preslee is doing much better. The boys are sick, but they'll survive. I'll update again next week.

P.S. If anyone is interested/willing, you can register on www.marrow.org to be a bone marrow donor. It's free until June 22nd as long as funds are available. It is a commitment, but you could save someones life :)

Monday, June 15, 2009

Kaidan's blood counts are fabulous!!!

Kaidan's counts are great! Her white count is over 4,000 and her ANC is 2800. We are leaving her chemo at 25% until our clinic appointment next Wednesday. Then we can decide, together with the doctor, if we will increase the dose.

Preslee is feeling much better, today is the first day she has not had a fever. I received a call today from the doctor at Camp Hobe. Several kids that were at camp have tested positive for Influenza A (yes, this is the swine flu from what I've been told). The are recommending that all the cancer kids that were there be treated with Tamiflu as a precaution, but of course, PCMC says NOPE. Why would they take precautions?? They'll just wait until the kids get it and then deal with it. Oh well, so far Kaidan hasn't had any symptoms, and I'm VERY, VERY glad that her ANC is high (emphasis on the VERY). Hopefully, with that GREAT immune system she has had the past couple of weeks she will bypass this round of illness.

I'll keep you posted, but it will most likely be next Wednesday after chemo when I update again.

Saturday, June 13, 2009

the girls are home...

We all went to pick up the girls yesterday from camp, it was exciting. They were very happy to see us, but they had a great time!! I knew they would, but still, I was a little worried...

They had many stories to tell: Kaidan did Irish dances for everyone, she asked a couple of boys if they wanted to dance (and they did), Preslee got an award for being the most organized, they met new friends, the food was weird (hot dogs IN the macaroni), it rained every day, they weren't scared or homesick, Preslee won a poster for answering a turkey call (??), they want to go next year, and so on and so on.

I think it was a great experience for them both. Kaidan looked like a whole new girl when we got there, all grown up. Preslee was watching for us and she ran to us and gave us HUGE hugs, but we had to find Kaidan...what???...I was quite surprised, to say the least.

Preslee caught a cold while she was there, but she seemed okay. Then, she woke up this morning with a fever of 102.4. Let's hope Kaidan doesn't get that. Kaidan is absolutely EXHAUSTED, but otherwise doing great. Cash is good, and Porter has a runny nose and, of course, he's tugging on his ears...poor boy! ( and poor me:) )

I think I'll try to get Kaidan's nurse to come out on Monday to do labs, I'll update again after that.

As always, thank you all so much for your continued support and love. Please add a little girl named Sadie to your thoughts and prayers. Nate grew up with her mom, and he talks to her uncle almost daily because of work. Sadie has an incurable brain tumor and decided several weeks ago to stop the chemotherapy that was slowing it's progression. She is now nearing the end of her battle and our hearts just ache for their entire family...

Tuesday, June 9, 2009

Camp Hobe (a camp for cancer kids and their siblings)...

I got the girls off to Camp Hobe yesterday morning...they were nervous, but very excited, especially when they found out they would be sharing a cabin. I thought it was great, because they were most scared about being in different cabins and it was an opportunity for them to realize how much they needed, loved, and WANTED to be with each other. I hope they are having a great time. I do miss them, and it's abnormally boring around here without them, but it should be a great experience for them both.

Kaidan was supposed to have labs drawn tomorrow, but she didn't want to have the nurse do it without me there, so we will wait until next week. I really wanted counts this week, but I worry that if I go out there to be with her she will decide she misses home and won't want to stay.

I'll update again on Friday after everyone is back home.

Wednesday, June 3, 2009

blood counts 6/3/09...

Well, Kaidan's counts are still great! I'm hoping this is the right dose...finally! We'll see next week. The blood results from these chemos have a delayed effect, so next weeks results will be more accurate.

Kaidan is doing well. She is really struggling with some stomach issues again and I am now blaming that on the chemo. I've done some research and it can cause gastrointestinal toxicity. Her symptoms were almost gone until we started the chemo up again. Poor girl.

The girls are out of school and so far they are enjoying summer. I have taken a couple weeks off work, so hopefully we can do some fun things together. Next week the girls are going to go to Camp Hobe. It is a camp for cancer kids and their siblings. They are excited and a little nervous, but I think they will both have a great time and it will be good for both of them.

I'll update again next week after we get Kaidan's blood work done.

Thursday, May 28, 2009

chemo day...

Everything went well today. Kaidan's blood counts were really good, her ANC is 2,300, so it has gone up A LOT since last week. We started her back on her oral chemos at 25% and I requested that we get her labs drawn weekly instead of every two weeks. We'll see how this goes, but hopefully it will be okay. Also, Kaidan has gained almost 2 pounds since last month!! I am very excited about that.

Porter has to get tubes put in his ears in the next week or so. He has another ear infection. :(

I'll update again soon. Thank you for all the positive thoughts and prayers.

Thursday, May 21, 2009

today's blood counts...

Kaidan's ANC is only 100 today. We cannot start her chemo back up and if she gets a fever she will have to be inpatient. This isn't what I was hoping for because her temp is still a little higher than normal. Right now it's at 99.5. I'm hoping we can make it through this holiday weekend without an ER visit!

Kaidan did go to school today, but she came home around 11 with stomach pain. She is just resting now.

Chemo is on Thursday of next week. It was Wednesday, but we changed it so Nate could come too. I really want to get some answers about Kaidan's counts. I'm worried that the chemo has done more damage to her bone marrow than they are telling us about.

I'll update again next week after chemo, unless anything changes before then.

Tuesday, May 19, 2009

no fevers!!!

So, Kaidan's temperature has just been hanging out between 99.3 and 99.8. I wouldn't even worry about it, but her counts were so low on Thursday. Her normal temp is usually between 96.9 and 97.5 or so, so even to be at 98.7 is warm for her.

I did call the clinic today and spoke with a nurse practitioner. After she called Kaidan a boy and I corrected her, she was really light hearted about it and laughing. I told her that I didn't know why she was laughing because I don't find it funny. I expect them to know that she is a girl...seriously, we've been going up there for almost 2 years now!! She tried to tell me all she had was a phone note in front of her, and it didn't have any info besides my name and Kaidan's name. I said, "So you don't have Kaidan's chart right there?" She told me she did have her chart and she was sorry. Maybe I over-reacted, but that is one thing that both Nate and I have disliked about Primary's. How can we feel like she is getting the best care possible if they don't even take the time to see who they are talking about. The should know she's a girl...PERIOD!! We wouldn't tolerate a doctor treating us that way, so why is it okay for them to treat our child that way?...IT'S NOT!!

Anyway, she said not to worry about the temp unless it gets higher or she starts feeling sick. I asked if we could have her counts drawn tomorrow instead of Thursday, just to make sure they are heading up, but she said no. She said it's better to just wait the extra day and let them get higher...so, whatever. I guess we'll wait until Thursday.

I'll update again after counts. Thanks for all the love and support and for listening to me complain.

Monday, May 18, 2009

home from school today...

Kaidan is home from school today. Last night she had a low temperature (99.7) and this morning it was 99.3. I don't feel good about sending her to school when I need to watch her temp. She feels okay...at least that is what she says. Her eyes sometimes tell a different story. Right now she's just sitting on the couch playing her DS. I've noticed lately that Kaidan has dark circles around her eyes, they seem to be getting worse. I don't know if she is having trouble sleeping or what. She has been really restless the past couple of nights, so hopefully that is all that it is.

We stopped chemo last Thursday, and she will have her blood counts checked again this Thursday. 50% chemo is not working for her, so we'll have to try 25% or possibly cut one of the meds that she takes. I have to talk to the doctor about that.

Preslee is home today also, she hurt her knee yesterday and is having trouble walking. (I'm thinking she just needs a little extra attention, so I've been giving that to her and hopefully tomorrow she'll be back in action.)

I'll update again on Thursday unless the fever becomes an issue.

Thursday, May 14, 2009

this weeks blood counts...

First of all, Kaidan is doing well. She has been having some issues lately with being tired and in a little more pain than normal, but she is doing okay. She has been going to school and feeling well for the most part.

Secondly, I got her blood results back and her ANC is back down to 300. Her other counts are okay, but that darn ANC is what keeps her from getting sick or from being admitted if she gets a fever. I haven't talked to the doctor yet, so I don't know what the plan is for her chemo. She's only on 50% right now and obviously her body can't handle that amount, so we'll see what they say.

I'll update again when I know what we will be doing.

Wednesday, May 6, 2009

swine flu vs. childhood cancer...

I copied this from another carepage. I thought it was very interesting...
**************************************************************************I sat down to blog about the swine flu in contrast to the childhood cancer crisis and found this and thought it was beautifully articulated and statistically solid.
The Swine Flu: A Crisis? You Decide!!!
It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:
--Over 100 schools have closed.
--President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."
--Congress approved $1.5 billion in emergency funds.
--Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."
--The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.
--WHO Director-General Margaret Chan has raised the alert level to phase 4.
--Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.
--Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We'reworking together at 100 miles an hour."
--Congress has asked Homeland to consider closing the Mexican border.
Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.
Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.
This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. But I am a little confussed. I would like to point out some comparisons.
1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.
2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently to childhood cancer, with 40,000 current cases and 2,500 annual deaths, as "very rare".
3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.
4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. Over and over and over. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.
5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.
6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer received a TOTAL of $30 million over a 5 year period. That works out to $750 for each child currently fighting cancer.
So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none.
Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 billion for the flu has been paid. The $30 million for childhood cancer was approved by the federal goverment as the Carolyn Walker Pryce Childhood Cancer Act, but has never been funded. Other issues of greater crisis keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package).
Some might still say my comparisons are still unfair, that I am not comparing apples to apples. But, just for the record, the U.S. apple growers got $170 million in the stimulas package.
Honestly, I am not criticizing the response to the Swine Flu. It is an appropriateresponse. I just do not understand why our children with cancer deserve less.
Please remember:
1 in 300 children will be diagnosed with cancer before the age of 20.
12,600 children are diagnosed each year.
3,000 will die of cancer each year.
Cancer is the #1 disease killer of children ages 1-19.
The cause of most childhood cancers is still unknown.
Only 3% of cancer research money goes toward childhood cancers.
There are currently 30,000-40,000 children fighting cancer in the U.S.
The number of children diagnosed with cancer has increased every year for the past 25 years.
Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.
In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.
Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers.
For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."
I copied this entry off of the PAC2 Website www.curechildhoodcancer.ning.com
**************************************************************************
I don't know about you, but I could not believe these statistics. It's unreal and unfair!
If you haven't already signed the cancer awareness petition, please do.
http://www.thepetitionsite.com/1/CureChildhoodCancer
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Everyone is doing well around here...it's nice! I'll update next Thursday after Kaidan has her blood drawn.

Monday, May 4, 2009

test results look great...

The doctor just called with all of Kaidan's results. Her bone marrowlooks good. It showed that her bone marrow is making red cells, white cells, and platelets....it also showed that there were NO CANCER CELLS!!! Her metabolizing test came back as well, and it looked normal. She is not having trouble with the absorbtion of her chemo. That is good as well, except that we are still left wondering why her counts are having such a hard time recovering. Anyway...the doctor feels good about all of these results and thinks that most likely she has just continued to get viruses that are affecting her counts and her ability to bounce back is hindered because of the chemo. He wants to get her back up to 100% chemo as soon as possible, so we'll see what her blood shows next Wednesday when the nurse comes out to draw labs.

Kaidan is home from school again today. She had a scratchy throat this morning and she was very, very tired. I'm hoping it's just allergies because her throat looked fine and she seems to be doing better now after resting all morning.

I'll update again if anything changes, but hopefully you won't hear from us until next Wednesday. Thank you all for your thoughts and prayers as we waited for all of these tests. We are truly humbled and grateful that we have receieved so much love and support. Thank you!

Friday, May 1, 2009

May 1, 2009

I'm sorry it has taken me so long to get an update with a little more info in it. I have been busy and I think the stress of waiting for results was getting to me.

Anyway, things are going well around here. The doctor on Wednesday said that he doesn't think the metabolizing test will show that Kaidan is having trouble. Usually, I guess, we would have seen her counts struggling from the very beginning, and she started this chemo in April 2008 and we didn't have problems until November 2008. So, he feels like it's unlikely that test will come back positive. We should get those results next week sometime.

Of course, we are thrilled that the preliminary results for relapse are negative! We have been walking on pins and needles since Wednesday waiting for the results. I will be extra thrilled when we get the final test back and it's negative as well! I'm hoping by Monday I will have those results.

Kaidan isn't doing great, but she is okay. She hasn't had too much energy, and when she does get a little burst she plays hard and then crashes hard for the rest of the day. She hasn't been to school for 2 weeks. She is having a lot of aches and pains in her back, head, and stomach. She manages to get through each day with a smile (usually she's smiling, but she has been extra cranky lately) so all we can do is hope that this will pass. We did start her chemo back up at 50% yesterday, so we will check her blood again in 2 weeks and see how she does. Hopefully her counts stay good, since at this point we don't have any explanation as to why they aren't recovering.

That sums it up I think. I will update as soon as I get anymore test information, otherwise you can consider no news as good news. :)

no evidence of relapse...

We have the preliminary results back and there is NO EVIDENCE OF RELAPSE!!! I will update again later with more details...

Thursday, April 30, 2009

no news yet...

I just wanted to update and let you know that I called clinic and they said the results were not back yet and they will call me as soon as they are back. They said to call back tomorrow afternoon if I hadn't heard from them yet. So, I just wanted to let everyone know not to worry if I don't update again until tomorrow. Also, when I have more time, I will update more about our clinic appointment yesterday. Kaidan hasn't been feeling well, and neither have I, so I haven't felt much like writing a lot. Sorry...

I'll update again as soon as I know anything.

Wednesday, April 29, 2009

clinic day...

Today went well. Kaidan had a bone marrow aspirate done and they also did her spinal with chemo so that she won't have to be sedated next month. I'm not exactly sure how that works, but I'm glad that she won't need to be sedated next month. It always makes for a long, long day when we have to do sedation.

Her counts were good today. White blood cells were 3.0, ANC 1100, hematocrit 36.1, and platelets 270.

We will get the bone marrow results tomorrow, so I'll update again after that. Her blood counts look good, so that is a good sign. We just need to figure out why her counts won't stabilize. I'm not sure when the metabolizing test will be back, it may still take until next week. I'll update when we get that back as well.

Overall, today went well. Kaidan is really tired, but that is just from being sedated. She isn't in any pain from the bone marrow, so that is good.

I'll update again tomorrow. Thanks for all the support.

Monday, April 27, 2009

Monday's blood counts...

Kaidan's counts were good this morning. Her hematocrit and platelets have gone up a bit, which is a big relief. Her white count and her ANC have dropped again, however, so we will still be doing the bone marrow biopsy on Wednesday. The biopsy will look for leukemia cells as well as just look to see if her marrow is working properly in making new blood cells.

Kaidan says she is feeling okay, although she didn't want to go to school, so I don't think she is feeling great. We'll see how tomorrow goes.

I'll update again on Wednesday after we are done up at the hospital.

Friday, April 24, 2009

home sweet home...

We are home tonight, together at last. It's nice. Kaidan's counts went up again. Her white blood cells are 3.0, her ANC is 700. Her hematocrit went down to 31.9 and her platelets went down to 155.

We are scheduled for a blood draw on Monday and chemo on Wednesday. We will also be doing a bone marrow biopsy on Wednesday, so Kaidan will have sedation that day. The other test they are running will take a couple of weeks because they can't just check the level of the chemo in her blood because she hasn't been taking the chemo regularly for so long, due to her constant fevers and low ANC. So they are looking at Kaidan's genetics and certain enzymes in her body, etc. I still want to do the bone marrow though, if only for our own reassurance. Also, Kaidan will not be taking anymore oral chemo until we get the results of all these tests.

Thank you to everyone who came to visit Kaidan at the hospital...she loved it. Also to everyone who kept us in their thoughts and prayers. We are truly grateful. I'll update again on Monday after I get labs back.

Thursday, April 23, 2009

one more day...at least...

Kaidan had a fever last night, so we are not going home today. Her blood counts did go up a little. Her ANC is 400 today. Her white count almost tripled from 0.8 to 2.2, so we'll see what happens with that tomorrow. The test for checking how the chemo metabolizes takes awhile to get back, so it might be next week before we know about that. We also have a bone marrow biopsy scheduled for next Wednesday to check for....I won't even say the word....again, the weird, queasy feeling in my chest.

I think we will go home tomorrow, depending on fevers. Right now she is at 99.9, so we'll see...

Thank you all so much for the messages of support, phone calls and visits to Kaidan, and the thoughts and prayers. We are always humbled by the support we receive. Thank you.

Wednesday, April 22, 2009

long post...sorry...

This is a REALLY LONG post...I'm sorry.

Okay, I have seen the doctor and we have a plan...

If Kaidan doesn't get any more fevers we will be going home tomorrow morning. Right now she is back in the 99.3-99.5 range, so we'll see what happens.

I voiced my concerns about her counts having a hard time recovering and so they are going to run a test to see how her body breaks down the oral chemo that she gets. I had never heard of this test before, and I'm a little frustrated that it hasn't been done sooner. She is going to check with Kaidan's primary doctor to make sure he hasn't run the test in the past, but since I've never heard of it I'm assuming he hasn't. (I know, I know...to ASSUME is to make an ASS out of U and ME :)) I told her I doubted he had, but she said he could have done it and just not told me...unlikely, but maybe I'm too critical...we'll see. She will let me know tomorrow if he has done it or not and we will go from there. She said only about 1 in 200 kids have a problem breaking down the chemo. They break it down much slower than normal, so the dose for their weight is actually way too much for their system. At least if Kaidan has this, we could adjust accordingly.

The other concern I have had is the rapid decline of Kaidan's platelets since Friday. She suggested that maybe we should do a bone marrow biopsy to rule out relapse. She does NOT think that is what it is, but we will see what Kaidan's platelet count is tomorrow and decide from there. Just typing that makes me have a feeling in my chest that I can't even describe. It just makes me sick, even though I know it is VERY unlikely. I would rather be safe.

So, that is the plan from a medical stand point. I have been pleased with our stay up here because we have the same resident we had last week (the only resident I have ever really liked) and the doctor on the floor is one of my favorites.

As I was typing this, the nurse came in to do the test to see how Kaidan metabolizes the chemo...interesting...I knew it had never been done before. It is things like this that are so frustrating. How can we feel like she is getting the BEST care possible when things are overlooked for so long. I have been questioning the doctors as to why her counts have such a hard time stabilizing for several months. There is just no reason why this test shouldn't have been done a long time ago. I hope that it shows something so that we can get her dosage right and figure things out.

Okay...enough of the medical stuff. I have a couple of stories that I want to tell you about. First of all, yesterday was a hard day for me (as if you couldn't tell). For the first time ever, Cash was really upset about us being at the hospital. He was BEGGING me to come home with him and then he asked Nate the whole way home why Kaidan and Mom couldn't come home. That was really hard for me. No one should have to go through this...not the child with the illness, and not their siblings! It was tough, I just felt so bad that we couldn't all be together. Having the boys up here today has actually been okay. Everyone is behaving and we are together (Nate is at work and Pres is at school). It's almost like being at home...not really :) Anyway, it is going better than I thought it would. In fact, my sister was going to come get the boys, but Porter was sleeping and Cash was watching a movie, so I told her they were fine. They are still being really good and they have been here for 4 hours!

Many of you know that Kaidan was always our "wild child". Well, that hasn't changed at all. She is still as fiesty and spunky as ever. I often have a really hard time with her because she can be so sassy. We butt heads a lot, but when we are at the hospital or when Kaid is really sick, it's a totally different story...usually. We do have our little arguments sometimes, but she becomes the biggest sweetheart ever. Kaidan has always been a tease, but she also has the BIGGEST heart and when she hurts someones feelings or sees someone sad, it breaks her heart. She is really an AMAZING little girl. But on to the story...about 4:00 this morning she needed to use the bathroom so she woke me up. The whole time we were in there she was telling me how sorry she was for waking me up, I felt so bad that she was so worried about it. I kept telling her that it was not a big deal at all, but she felt bad anyway. I just thought it was so nice that she had such worry for me when she's the one in the hospital. Then, when we climbed back into bed she told me she loves me. She tells me that all the time, but this time was different. It had such meaning behind it. A lot of times we say those words without much feeling behind them, it is more of a habit, but I could just tell how genuine she was being. It felt great to have that small moment with her. Then, to my surprise, this morning she asked me if I was hungry and wanted to go downstairs to get some breakfast. This was unusual because she does not like to be left alone in her room. It just shows me how brave she is trying to be. I'm very proud of her.

The last thing I wanted to write about is from another carepage that I read. This mom had been told that her child had only a 25% chance that he wouldn't relapse, 75% that he would. She used the weather as a metaphor. How would you prepare for a day outside if the weatherman said there was a 75% chance of a huge storm? What would you wear knowing that there is a 25% chance it will be completely sunny and the most beautiful day ever? It's just something to think about. It's hard to understand what we worry about on a daily basis unless you are going through the same thing. Of course, we are blessed that our odds are much better than that. We were given 60-70% success rates. Based on Kaidan's high white count at diagnosis and the fact that it was T-cell leukemia, she was put into the high-risk category. So, when you think about that, it makes you look at things a little differently. Right now, it's a beautiful, sunny day. I'm wondering how to dress because the weather man says there is 30-40% chance that the biggest storm we've ever seen is going to come through. But, like I said, right now is beautiful and there is 60-70% chance it will stay that way. What would you do...I think I'll at least take a jacket and an umbrella.

quick update for wednesday

I'm going to do a longer update later, but I wanted to give a quick status on Kaidan. She is doing well, no fevers since around 6:00 last night, but we will be here at least until tomorrow.

Her counts have all dropped. I said her hematocrit was 32 yesterday, but it was actually 34.5, today it is 31.3. Her platelets have dropped again to 161, white blood cells have dropped to 0.8, and ANC has dropped to 100.

I have the boys up here with me this morning and so far it is working out well. I have a lot of offers for help today, so I will be good as far as that goes. Thanks to everyone!
I'll update again later this afternoon after I see the doctor.

Tuesday, April 21, 2009

I should've known better...

I should've known better than to think I wouldn't be updating again until next Wednesday. We are at the hospital again...INPATIENT. Kaidan's temp was hanging out around 100 all day, never going over "the mark" of 100.3, but none the less, a temp for Kaidan. Around 3:00 it started to rise, and by 5:00 it was 101.7, so here we are!

I called the clinic and they tried to send us to the E.R., but I told them NO! I knew we would be admitted, because Kaidan's ANC was below 500 yesterday, so I didn't see any reason we needed to sit in the E.R. for 6 hours just to be moved up to the 4th floor. So, after a little persuasion they got us a room and just direct admitted us. Sure enough, Kaidan's counts have dropped even lower than yesterday. White blood count down from 1.8 to 1.0, hematocrit down from 38.5 to 32, platelets down from 299 to 204, ANC down from 300 to 200. Keep in mind that this is without any chemo for over a week. We need to find out what is causing these fevers and why her counts are having such a hard time recovering.

I'm feeling a little picked on and a lot stressed out! Nate's work isn't being as kind as they have been in the past. I feel like people sometimes forget that Kaidan still has cancer! Just because we started down this road almost 2 years ago, she still has cancer. Things aren't as rough as they were in the beginning, but she still has cancer. We are still doing treatment, and we are still walking on pins and needles every time we wait for test results. It will be that way for the rest of our lives. I feel blessed that we have a wonderful family and a huge support group, but it is so hard to not have one of us with the kids. We have worked really hard to keep me home as much as possible, and the boys are always with Nate or me. It's hard for others to understand how tough it is for the other kids when we are up at the hospital. For us to send them from place to place and leave them with people they aren't with that often only makes it more difficult. They feel left out and neglected. There is no way I could ever say that this experience hasn't had as big of an impact on all of them as it has on Kaidan. It is SO, SO hard for everyone.

Anyway, enough of my belly aching. I'm just feeling some uncomfortable feelings lately. You know, the camels back can only hold so much straw...

Until tomorrow...

Monday, April 20, 2009

Monday blood counts...

Kaidan had labs again today...not really any change. Hematocrit is 38.5, platelets 299, white blood count 1.8, and ANC 300. I had a big scare this morning because when Kaidan brushed her teeth her gums started bleeding like crazy. I know this isn't a big deal to anyone, but for a cancer patient it's HUGE. Bleeding gums is a sign of low platelets and I knew if Kaidan's platelets were 399 Friday they should not be low today. That would be a bad sign. So, it was nerve racking waiting for labs to come back, but I was very, VERY relieved to see that her platelets are still in the normal range, even though they have dropped. She must have something irritating her gums, so I have had her using an antiseptic mouthwash to see if it helps. Her gums have never bled before, so it scared her...she's okay now though.

I had the nurse leave her port accessed because her temperature has been between 99.2 and 99.6 all day, Kaidan's baseline temp is 96.9-97.5. I figured if we took it out she'd get a fever, but if we leave it in she won't. :) Isn't that the way it always goes?

She's doing okay, I don't think she feels fabulous, but she'd never say otherwise. She stayed home from school, so that says a lot. Anyway, they are keeping her off chemo until her clinic appointment next Wednesday, so we'll see what her blood is doing then.

I'll update next Wednesday unless something changes before then. Thanks for all the love and support. It means everything to us.

Friday, April 17, 2009

Friday labs

Kaidan had labs done today and they look good. Her hematocrit is38.4, platelets are 399, white blood count is 1.8 and her ANC isonly 300. So...she is still at HIGH risk for infection and illness,until that ANC goes up at least above 500, it would be even betterif we could get it back above 1,500. They won't start her chemosback up until it is higher than 750.

I'll update again Monday afterher next labs.

Wednesday, April 15, 2009

going home...

We are headed home! We are waiting to see the "real" doctor, instead of the resident for final permission, and then we'll haveto wait for discharge papers, so we will go home today, but it could be awhile still. Probably this afternoon sometime. Kaidan's blood counts are going up, her ANC is 100. So, she is still neutropenic and if she gets another fever we'll be right back up here, but hopefully that won't happen.

We have stopped Kaidan's oral chemos and she will have blood draws every Monday until next clinic on the 29th.

I'm going to keep a log of her stomach pain and we'll decide what to do about it based on what those logs look like. I had a long talk with the resident today (the first resident I think I've ever actually enjoyed talking to) and I feel much, much better about holding off on any further testing. If all doctors would just spend a little extra time explaining and LISTENING the world would be a better place! The resident this morning did that, and I feel a lot better about things.

I'll update if anything changes or on Monday after her blood draw...whichever comes first!

Tuesday, April 14, 2009

update 2 for 4/14...

We aren't going home today. I'm glad, only because with her counts at 0 and our "GREAT" luck, she'd end up with a fever at midnight and we'd be right back up here. So we'll be here at least until tomorrow.

As far as the abdominal stuff, they said they wanted to try a stool softener for a few weeks to see if that helps. I guess the x-rays didn't show anything. I won't do the stool softener though, because the problem we are having is that Kaidan has diarrea on average 3-4 days a week already. DON'T THEY LISTEN?? That is 1/2 the problem. So, I think the next step should be ultrasound or a scope. I don't know...maybe i'm worried for nothing. I think I'm just going to start keeping a log to show the doctors and then we'll go from there.

In other news, Porter still has an infection in his right ear...this has been going on since January...so we have him on one more antibiotic and then we'll deal with the tubes in a few weeks if necessary.

I'll update again tomorrow.

the waiting game....(update 1 from 4/14)...

We're just waiting for the doctor. I don't know if they will send us home or not. Kaidan is doing well, she hasn't had a fever since we got here, but her counts have all dropped today.

YESTERDAY, TODAY, NORMAL
white blood 1.5, 1.3, 5.0-14.5
hematocrit 36.2, 32.3, 35.0-45.0
platelets 365, 305, 150-400
ANC 0.2, 0.0, 1.5-8.0

The blood cultures haven't grown any bacteria. Rounds started at 9:00, so they should be coming around soon.

They did several x-rays yesterday on Kaidan's abdomen yesterday to see if they could find out anything with her stomach aches. I haven't talked to the doctor about them yet either, so we'll see if they show anything. Of course, since we've been here, she hasn't had any problems and she's eating great. Isn't that the way it goes?

I know Kaidan looks good and she feels pretty good too, but we do have to remember that her little body has taken a beating these past 21 months and she is very fragile. I would always rather be extra cautious and safe. Sometimes I feel the doctors look at her and because she looks so good they discount the symptoms I am telling them she has. It's very frustrating. I just have something in the back of my mind that tells me we really need to watch her close and this stuff going on with her stomach isn't normal, even though it comes and goes. We'll see...

Yesterday, Nate and his mom and the kids came up and hid the goodies from the Easter hunt around Kaidan's room. She was really excited to get her own little Easter hunt here. I'll try to post some pictures today.

I will update as soon as I know more.

Monday, April 13, 2009

INPATIENT...ANC 200...

First of all, please vote daily for our Utah Make a Wish
Foundation:
http://www.bettycrocker.com/StirringUpWishes/Default.aspx

And...on to today. Kaidan woke up with a headache and a low fever. I called clinic and, of course, they needed me to bring her in. We came up and her ANC is 200, so here we are, INPATIENT!! Kaidan is not happy about this because we had an Easter party at Nate's mom's house tonight and she is very sad that she's missing it. We will be here for at least a day or two. I'll update tomorrow morning after I talk to the doctors because I don't really know what the criteria will be for her to go home (you know, consistency has never been their strong suit). Since we've been here she hasn't had a fever, but that's how it goes. I also told the doctors that I want them to look into her constant stomach problems. We're here anyway, so now is as good a time as any to do further testing. I just want to make sure it's nothing, on and off stomach pain and diarrea is what got us into this whole cancer mess in the first place. The doctors don't like to listen to me (things are always better if it was their idea), but I'd rather run the tests and be safe. So, we have started with X-rays and we'll go from there.

I'll update again tomorrow morning. I hope everyone had a wonderful Easter.

Saturday, April 11, 2009

Happy Easter...

First of all, please vote daily for our Utah Make a Wish Foundation:
http://www.bettycrocker.com/StirringUpWishes/Default.aspx

Secondly, I have posted new pictures of Porter’s 1st birthday at our family picture site:
http://www.thesudburyfamily.shutterfly.com

Last, but not least, an update on how we are doing:
I’ll start with Kaidan. She’s doing well other than a constant stomach ache. I’m not sure what the cause is, but I’m hoping it will get better soon.

Preslee is doing great. Porter is doing well, he still has a runny nose, but he’s good.

Cash is doing well, so I thought. He complains of a stomach ache almost daily (usually several times a day). I have just chalked it up to him feeling like he needs to use the potty (which, by the way, he is doing AWESOME!). Anyway, this morning was no different. Cash told me several times that his tummy hurt and I responded by asking him if he needed to poop? Nope. So I told him to go lay down on the couch and it would feel better. Apparently, go lay on the couch sounds a lot like go throw up all over the kitchen floor! Yep, that’s what he did. He puked EVERYWHERE! Granted, this is part of life with kids, right? I understand that, but can someone please cut me some slack??!!?? Today was not the day for this! Nate is gone turkey hunting with my dad, my sisters are in Moab, my mom was at work, and I was supposed to be to work in 20 minutes (the kids were going with me). We were just getting ready to walk out the door and now Cash is covered in puke, so is my kitchen, and of course, so were my pants (he continued throwing up all the way to the bathroom). He’s doing much better now, but I have no idea what is wrong with him. He keeps getting these strange fevers every few days and the constant stomach pains. AAAAAAHHHHH!!

So, that’s a day in my life! I haven’t worked for almost a month because of everyone being sick. I’m hoping after Easter life can get back to normal…yeah right!

I want to wish everyone a wonderful Easter from the Sudbury’s!

Wednesday, April 8, 2009

Please support the Make a Wish Foundation of Utah...

Everyone is okay around here. Not great, but okay. Kaidan is at school, but she's struggling with some stomach issues the past day or two. Porter and Preslee are well, and Cash has been running a fever with a cough and runny nose for the past two days.

Please vote daily for our Utah chapter of Make a Wish. They need your support!! Thanks!!

http://www.bettycrocker.com/StirringUpWishes/Default.aspx

Sunday, April 5, 2009

doing better!

We are all doing OK. Kaidan hasn't had a fever since Friday, so I have de-accessed her port. Preslee is doing much better, her cough is even almost non-existent. Cash is good. Porter is coughing, has a runny nose, and a low fever. He had a rough night last night, and now with the fever, I'm thinking it's probably his ears. I'll probably call the doctor and get him started on an antibiotic. I'm still coughing like crazy, but I feel better during the daytime, so I'm OK with that. I'll update again soon.

Remember to vote online at Stirring Up Wishes with Betty Crocker for the Utah chapter of The Make a Wish Foundation. Thanks!

Friday, April 3, 2009

Another day...

Today is going good. Kaidan isn't feeling well. She's fevering still and we'll be giving her the IV antibiotic at home around 3:00. I called and got her lab results and she has metapneumovirus. I've googled it, and it's basically a respiratory infection, similar to RSV. It's nothing to worry about as long as it doesn't settle in her lungs, so hopefully it will run it's course and she'll feel better in a couple of days.
Other than that, things are good. Preslee is doing much better, Cash is coughing, and Porter is coughing and has a runny nose, but they are OK. Nate has somehow avoided all of this...I wasn't so lucky. I think maybe, just maybe, I'm starting to feel a little better today.
I'll update again in a few days unless anything changes.
The Make a Wish Foundation of Utah needs your help!! If they get the most votes, Betty Crocker will sponsor a wish this year for them. Please go to the link below and vote for the Utah chapter of Make a Wish.
http://links.emails.generalmills.com/ctt?kn=3&m=3993252&r=NDIyMjA1NTcwMgS2&b=0&j=MTE1MDM1ODA2S0&mt=2&rj=MTE1MDExMTcyS0&rt=0

April 2, 2009

Well, Kaidan's ANC went from 1400 yesterday to 600 today, but she hasn't had any fevers since this morning. The doctors gave her another dose of antibiotic and sent her on her way. They are sending out another dose for tomorrow that we will give her at home, so she should be good through the weekend, unless we notice any changes in her. They also decreased her chemos back to 50%. (She was already at 50% on one, but the other one was up to 100%)
This definitely isn't "smooth sailing" like we were told it would be!
Porter had his doctor appointment today. His lungs were clear, so he doesn't have pneumonia...that's GREAT! But...his ears are looking pink, not infected yet...but possibly on their way. The doctor (can I just say, I LOVE HER) gave me her cell phone number so I can call her over the weekend if he seems to be bothered by his ears. She said she'll just call in the antibiotic instead of me calling the office and having to make an after hours appointment! If they do get worse, we will be putting tubes in his ears in the near future to stop this endless cycle of infections.
Next chemo is April 29th...7 more to go!!

April 1, 2009

Sorry I didn't update yesterday.
Kaidan did have chemo and she also received the IV antibiotic because she had a fever.
Today...
I am taking Porter to the doctor for his 1 year check-up. He is sick also, so I'm glad I had this appointment.
Kaidan has a fever of 104, so she will be going back to the hospital also.
I'll update again later with all the details.

Tuesday, March 31, 2009

New pictures...

I have a new website where I will post pictures. I uploaded our pictures from Christmas in Disneyland and I will get more on soon. Check it out:

http://thesudburyfamily.shutterfly.com/

Both girls are at school today. Kaidan had a temp of 101.6 at 1:00 this morning, but it came down on it's own. Hopefully she can make it until tomorrow since that is her chemo appointment.
Porter is pretty sick, but other than that we are starting to do better.

I hope you enjoy the pictures!!

Monday, March 30, 2009

Still sick...

Hello everyone. We are all still fighting being sick at our house. We had a good weekend of mostly being lazy, but it's still hanging around.

Preslee is doing much, much better, but I kept her home one more day. I'm hoping by tomorrow her cough will be even better. Then I will feel OK about sending her back to school.

Miss Kaidan ended up in our bed around 3 o'clock this morning with a temperature of 100.6. .Right now she is hanging out around 99.9, so she is home and I am watching her. I'm assuming we will have to take her to clinic because she is coughing and not sounding too good. We'll see what her fever does though. Maybe we'll get lucky.

Cash is coughing now too, but he seems to be doing OK. I believe he was the one who started this round of illness, so hopefully he doesn't get sick again.

Porter...what can I say? We finally cleared his eyes up and now he has a fever and a cough. He didn't sleep well last night at all and I am taking him in to the doctor this afternoon. He hasn't felt well the past couple of days. He's been REALLY clingy and sleeping a lot. Hopefully we can get him on an antibiotic and get him feeling better.

I'm still not feeling well, but it's mostly at night and in the mornings. I seem to feel better as the day progresses, so I think I'm getting better. I haven't talked to Nate today, but I think he's doing OK. He has been feeling congested and he was worried that he was catching it, but hopefully he'll make it through.

It seems like we are always sick at this house!! We have even had people ask us if maybe there is something in our house that could be making us sick. I think that it seems worse because of Kaidan having cancer and the fact that we have 4 little kids. If Kaidan didn't have to go to the hospital every time she had a fever, things wouldn't be such a big deal. I suppose I could quarantine our whole family for the next 8 months, but I'd rather let Kaidan go to school and lead a "normal" life. I am hoping that once the weather warms up and we can get outside more the illnesses will become fewer and farther between. I plan on washing all of our sheets today and sanitizing all the things we touch often. We do "clorox" all of our lightswitches, door handles, remote controls, keyboards, etc. twice a week, but somehow these germs keep getting to us!! Oh well...this too shall pass!

Thanks for keeping up with us. Hopefully I can give an update of COMPLETE health in a couple of days!

(to read our entire story from the date of Kaidan's leukemia diagnosis, go to www.carepages.com/carepages/kaidabug )

Saturday, January 10, 2009

OK, so when I updated the other night, I thought (hoped) that I wouldn't be updating again until next chemo in February. I mean, seriously, it's about time for our lives to be boring...it's about time for the days to come and go without anything worth writing about...isn't it???

Well...

Cash was watching Kung Fu Panda, doing a little kung fu of his own, jumping off the couch, yelling skadush??? and...he broke his foot!! Yep, you don't need to re-read that...HE BROKE HIS FOOT!! So, he is in a splint and I have to take him to the orthopedic doctor next week. This will now be 3 out of 4 children who have seen the orthopedic doctor! I'm just going to ask Preslee to break her arm or something so I can just take her in at the same time!! I can't believe it, all I can do is laugh. It's unreal the amount of bad luck we have at our house.

I do have to say, on a more somber note, I am blessed to have a boy with a broken foot. There are so many families that have lost their kids to cancer and other diseases. They would probably give anything for that child to be back with them with a broken foot. I am blessed to wake up each day, with all the chaos, because it means everyone is alive and doing OK. It means I have another day with my family.

(if you'd like to read our entire story, check out Kaidan's carepage at www.carepages.com/carepages/kaidabug)