Miss Kayla's Story

NEW BLOG!

2010-01-10T12:55:00.000-08:00

I have moved to another blog. I wanted to get back into reviews and giveaways. So integrated the two.
It is www.adventuresinmommyland.com

Happy Reading :)

One more road map to go.....

2009-11-06T08:27:00.001-08:00

hopefully.

On Monday Kayla received Vincrystine and Methotrexate for her day 57 dose. That means that we have one more road map of hard chemo left. Then she will go into maintenance. Which is where she will only have to go to the Dr. office once a month and take a chemo pill everyday for 1 1/2 years. We might end up going to the doctor more than a few times in the beginning because they have to make sure that the pill is the right dose. They don't want to give her too much, or too little. He also said that her hair is going to fall out again. :::sigh::: This is the longest that it has been and she had been really excited about it. I broke the news to her and she seemed pretty ok with it. By now she is used to crappy things happening to her body. She has been so brave throughout the whole thing and I get my strength from her.

Jimmy got a PET scan and a CAT scan on Wednesday. They had to do the scans before starting radiation just to make sure that nothing has grown. I have to say that I am quite nervous and he is terrified. I have noticed him acting mad and upset and I asked him if he is scared of the results. Let's just say that he is preparing himself for the worst, eventhough there has been no indication that it has grown or come back. I think he just wants to be mentally ready for whatever the results say.

This past week has been really trying on me. I don't know which way is up. I am trying to be strong for Kayla and Jimmy but I don't have anybody being strong for me. They all put up a great front but for some reason I don't feel any better. And it's not like I have anybody to talk to that can relate. ugh....pity party for one please.

Pumpkin Patch and a Dr. visit

2009-10-23T11:46:00.000-07:00

On Sunday Jimmy, the kids and I went to the pumpkin patch. We didn't stay long because it was windy and there was hay blowing everywhere. The kids played a few games and took a picture with the scarecrow. They picked out pumpkins and got some candy.
Yesterday Kayla had a chemo appt. Her ANC was 1215 which surprised me. I thought for sure that it was going to be low. She got her Vincrystine and Methotrexate thourough her port. Then we went over to the big hospital and she got her spinal tap. She reciewved methotrexate in her spine as well. Right before we were going to leave Kayla decided that she wanted chips so I told Jimmy I would go down and get them and meet him at the elevators. I got the chips and waited. When the doors opened I saw Kayla and she was mad. Jimmy wanted to carry her because she was still loopy from the medication. She did not want Jimmy to carry her and wailed her head off. With promises of a Happy Meal she calmed down. All in all it was almost a 12 hour day. We were so pooped.
Here are some pictures from the pumpkin patch:

Family

2009-10-23T11:36:00.000-07:00

This past weekend Kayla got to meet some of her extended family. Her great Uncle John, great Auntie Hannah and cousin Sonya came all the way from the UK. I was super excited because I hadn't seen them in about 5 years. They are originally from England but they lived in Southern California when I was younger. My aunt is German and worked at a German deli when they lived out here. She was nice enough to bring up the fixings for my favorite sandwich from her deli.
There was a big family get together at my aunt Michelle's house on Saturday. We all got together had food, fun and laughs. I was hoping and praying that Kayla would be healthy enough to go and she was! I am so thankful that she was able to meet them and hang out with family.
They came up on Monday and we went to the village and fed the ducks. Here is a picture of us:

(From left to right) Sonya, Uncle John, Auntie Hannah, Sheree, Mom, Kayla, Grandma Anne with Roo, James and Me.

Frustrated

2009-10-12T15:53:00.000-07:00

Today Kayla had a doctor appointment for labs, or so I thought. We went in and had to be isolated (again) because Kayla still has a cough. Thank God Jimmy's sister Heidi sent Kayla an ipod with "Horton Hears a Who" on it. There were no movie carts available.
Anyway, they take her blood and send it off to the lab. I always expect that the lab will be running behind and today was no exception. We waited a little over 2 hours for her counts to come back. Before labs came back I talked to the head nurse and asked her if Kayla was going to get chemo. She said that it was only day 7 (Her road map calls for every 10 days) so she probably wouldn't get chemo. Then when her labs came she paged the Dr. to ask if he wanted to give any chemo. Kayla's ANC is 687 which is under the 750 minimum to get chemo. I assumed that she was only going to get Vincrystine since it doesn't really lower counts and is pretty mild compared to other chemo drugs. He called back and said that we would just skip to day 21. The nurse said that she would get chemo today and PEG (a shot in each leg) tomorrow.
The tech comes in and Kayla asks "How many chemos and I getting?"
"Three" she says.
I said "What do you mean there are three?"
"Well one of the is Zofran" (an anti-nausea medicine) says the tech.
"The other ones are Vincrystine and Methotrexate"
My heart dropped out of my butt.
"No, she is only getting Vincrystine" I said.
"It says on the orders that she is getting both" says the tech.
The tech then walks out and asks the nurse if Kayla is supposed to get both. The nurse says yes and walks in the room.
"We are starting day 21 so she is getting the chemos that are listed for day 21" said the nurse.
At this point I was livid. I had been told 4 different things and I wasn't sure what was going on at that point. All I knew was that the ANC killer (aka Methotrexate) was about to be administered to Kayla. I turned away and tears started running down my cheeks.
I am so afraid that we are going to have a repeat of last time when she got sick from the chemo and somehow caught the flu and c-diff.
Then the Dr. came over from the big hospital (he had been doing rounds) and he could tell that I was not happy. He asked me what was wrong and I told him that I wasn't happy about her getting Methotrexate. I told him how afraid I was that her ANC would go to 0 and that she would have to be admitted. He told me "This is what happens with chemo, levels drop and sometimes they have to be admitted."
I said " Well yeah but she has been admitted 14 times."
He didn't have anything to say about that so I moved on to my question.
"Is there anything stronger for her nausea? Last time she had methotrexate she was nauseous and threw up."
He ended up prescribing Zofran in a higher dose.
So far Kayla has only complained of feeling a little dizzy, but besides that she is feeling fine.

Looking back....

2009-10-11T12:50:00.000-07:00

I decided to look at the news articles that were written when this all started. I was numb when it all happened and I didn't really take it in. I am so deeply touched that these people took the time to write our story and listen to me talk.
I just read one of the articles and it made me feel so loved. I remember the outpouring from our community and all of the kind, selfless things that complete strangers did for my family.
Thank you all so much. I love my community and all of my new friends. It is because of your kindness that I am where I am today.
Thank you to those that braved the snow to make it to the benefit dinner at Borderline. Thank you to those that arranged the pancake breakfast, all of the volunteers and hungry patrons. :)
I really can't thank you enough.

Here is the first newspaper article about us :
here

Kayla had the flu

2009-10-06T08:30:00.000-07:00

Kayla got out of the hospital last Thursday. I have meant to update but it is hectic around here. She came home taking so many medications and some of them have to be taken 4 times a day. They had her on Tami-flu, even though she didn't have the swine flu. The infectious disease department at the hospital sent the swine flu test twice because they didn't believe the first result that came back. So the whole time she had to be in isolation and we had to wear masks, gowns and gloves the whole time. I don't know about you but wearing a face mask for 8+ hours gets very itchy and irritating. Not to mention my glasses were foggy all day.
She is still struggling with c-diff. She takes her Flagyl 4 times a day but her poop is still not as hard as we would like it to be. I read on the Internet that her chances of having it again are greater now that she has had it. awesome.
I didn't even know until yesterday that she had the flu. They were taking her vitals and asking me about her medications and the nurse says "I see here that she had type A flu while she was in the hospital." I told her that I didn't know that. It would have been so awesome if the hospital staff could have informed me about that. It explains a lot. My poor baby was so so so sick.
Back to yesterday, we had to be in isolation yesterday. I am so glad that they brought a movie cart in. It made the isolation bearable. It took 3 hours for her labs to come back and her ANC was only 259. That's low. Her doctor decided to give her Vincrystine but not methotrexate. I'm glad that she was able to get some chemo but I just hope she doesn't go to 0. It is pretty much a given with Kayla that if she goes to 0 she is going to get admitted for a fever.
The doctor that was doing rounds when Kayla was there told me that Kayla has been so sensitive to every stage of chemo, which is a good thing because it means that her body is responding. She also said that Kayla has been hospitalized more times than any other kid she has seen. She meant in the ratio of time since diagnosis vs. hospital stays. 10 months since diagnosis - 14 hospital stays.
We go to clinic next Monday to see what her levels are and to see if she can get Methotrexate. Her Dr. said that he is not going to up the dose (which is normal protocol for this road map) he is going to keep her at the one the had her on.

Hospital stay #14

2009-09-28T18:40:00.000-07:00

I have been meaning to update but I don't have many chances to get to the computer. Kayla was admitted last Thursday for severe dehydration. She was so dehydrated that she wasn't able to talk.
My mom and I took her to the ER to be checked out and she was transferred down to this hospital. Along with her dehydration she has C-diff. Clostridium difficile, often called C. difficile or "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. She had terrible diarrhea, going about 30 times a day. I had to put her in diapers because she was making such a mess in her underwear and pants. I just threw them away because the smell is 100 times worse than normal poop. She hasn't eaten much since last Monday, and if she does eat it is almost always vomited up. She is on three different anti-nausea medications and still has almost no appetite.
She is getting nutrients through her IV because she has lost 5 pounds. That may not seem like a lot but when you are only 3 feet tall it is a lot. She is down to 37 pounds, she was 42. Slowly but surely she is warming up to food, I think that she is just afraid to eat because she knows that it is going to come right back up.
I have been here with her the whole time. My philosophy is this: If I was her, I would want my mom. period. So I am here for her. I am exhausted and hungry but I am here. The reason that I am hungry is because I can't bring food into the room, it makes her nauseous to smell it.
My parents visited on Saturday and brought James. I took him out to get pizza but he was more interested in the arcade games than spending time with me. My Aunt also visited yesterday and played card games with Kayla. My Grandma visited today and brought me a bunch of snacks. It's nice to have your own food because eating at the hospital can get expensive.
They are testing her for the swine flu, it takes a week to get the results back because they have to be sent to the CDC. So in a few days we should know. I will be glad when I don't have to wear a gown and mask all the time. It is so uncomfortable.
She had to get a chest x-ray today because there was blood in her vomit this morning.
I will update when we get results back.

Chemo made her sick

2009-09-24T08:16:00.000-07:00

On Monday we went to clinic and her ANC was 1600! I was so excited, but scared at the same time. That meant that she could get her chemo and spinal tap. She started a new road map and now we will be going every 10 days. Kayla received Vincrystine and Methotrexate via her port a cath and methotrexate in her spine. She was able to eat after the procedure and all that she wanted was Doritos and a happy meal. I got her the Doritos and she ate them while she laid down and waited for her 30 minutes to pass. (She has to lay down 30 minutes after her spinal tap to make sure that the medicine distributes evenly, and she could also get a killer headache.) She fell asleep in the car and wasn't even awake when I got her happy meal. We headed up the mountain and it was so hot! I can't run the A/C on the way up because the car can over heat. So I think the combination of heat and windy road made her feel queasy. We got home and she went right for the couch. I took her shoes and pants off and pointed the fan in her direction. She laid there for about 30 minutes and then told me she needed to throw up. So I took her to the bathroom and she hung her head over the toilet. I tried visualization exercises with her (ie. think about ice, cold things) we even went outside so she could feel the evening breeze. But this time it didn't work she was still nauseous.
So she went up to my mom's room and laid with her for a while until she felt the urge to throw up again. I went upstairs and sat next to her as she started to heave. In between heaves she was asking me why she was throwing up and I told her that it was because of the chemo. She threw up every last bit of the contents of her stomach and told me that she was done. She crawled back into her grandma's bed and fell asleep.
Kayla has been nauseous every day since then. She is always asking me for a "tummy pill." And her back has been hurting too. I have been having anxiety all day every day because I really don't know what to expect with her. I am hoping that the methotrexate doesn't make her counts too low.

No chemo again

2009-09-16T09:36:00.000-07:00

We went to chemo on Monday and her levels were still too low. Her white cell count had gone up so we knew that her ANC had to have gone up too. It was only 700. It has to be 750 for her to get chemo. I am glad though b/c she will have another week to get her ANC up so that when she does get the chemo she wont go to 0.
It is so hard b/c she is supposed to get a spinal tap on the first day on the new road map. So every time that we have gone we can't feed her. I don't know about you but I would feel like absolute crap if I hadn't eaten all day and then had to get a needle in my spine. Her new road map is every 10 days so we wont have the same days like we had with the previous one.
Kayla seems to be doing fine. She woke up with a sore throat but I think that it is because she was snoring last night. She had some tea and a cough drop and she says that she feels fine.
As I type this she is doing her home and hospital school. James wants to do work too but his attention span is not so great right now. He wants to play drums with the pencils and pencil box. So I gave him a rake and he is outside raking leaves. :)
It has gotten a lot cooler which made me realize that I am not ready for the cold weather yet. Jimmy said that we are supposed to have a heat wave later this week, here's hoping.

No chemo this week.....

2009-09-11T17:55:00.000-07:00

I thought for sure her ANC was going to be atleast 1000.
It was 330!
No chemo for her. It is kind of like a catch 22. On one hand I want her to get her treatments on time and get chemo over with, but at the same time I like seeing her feel better and look better when she has been off of chemo for a few weeks.
Her teacher came again this week and Kayla is doing much better. She was pretty shy the first week and didn't listen as well as she would have in a classroom. Miss Jessica brought colored shapes for Kayla to make designs with. She said it has something to do with math skills.
James is being a good student too. Mrs. Goodwin is sweet enough to go out of her way and send 2 of every worksheet so that James has one too. :)
He is learning how to cut things with scissors. (I didn't let him use scissors before b/c my children have a history of cutting things like hair and clothes)
He has learned how to hold a pencil the right way (he still holds it like a caveman when she's not around lol)
And Miss Jessica said that having him sit there and listen to Kayla's lessons, he is learning how to pay attention and follow instructions.
She actually told me that both of my children have longer attention spans than a lot of other kids their age that she has seen. (Could have fooled me!)
Other than that not too much has gone on.
Thank God <3

September is Childhood Cancer Awareness Month

2009-09-04T07:55:00.000-07:00

If Cancer is the “C” word no one ever wants to hear uttered in their doctor’s office, it is guaranteed to be an even bigger fear when it is associated with the children in your life. With thousands of children being diagnosed each year, there will always be a need for awareness and resources for scientists to find a cure. September is National Childhood Cancer Awareness Month and every little bit counts. From visiting children’s hospitals to donating teddy bears to making socks for little patients’ feet, giving a little bit of your time is just as appreciated as giving part of your paycheck for the cause of researching childhood cancers.

Because we were all children once, imagine how hard it would be to receive a damaging diagnosis during prime growing years, and see how strong these children are to face their illness, most without fear. This September, stay aware of the effect childhood cancer has on everyone.

Fast Facts About Childhood Cancer
-This year, over 9,000 children will be diagnosed with cancer.
-Cancer is the leading cause of death among children.
-Over 1500 children died of cancer in 2005.
-Children tend to develop different types of cancer than adults.

Please help us find a cure by going here and donating.

I was going to bed

2009-08-31T08:52:00.001-07:00

and I stopped when I walked by Kayla's bed and stared at her. She was moving a little bit, then she put her hands under her head and was still. A million things were going through my head as I looked at her. "Am I going to help her pick out a dress for her first dance? Is she ever going to have a crush? I hope her little heart never gets broken. Is there somebody out there that is going to love her the way that I do?" I want to wrap her up and keep her safe with me. I touched her chubby cheek and her little arm. I kissed her bald head and went to my bed.
My eyes would not close, even though it was really late. I kept thinking about all the things that a mother and daughter go through, and I realized that I want it. I want it all. I want to help her and guide her and be her best friend. I want to help her get ready for the dance. Pick out new clothes for school.
I didn't really let it in before. I would start to think about losing her but quickly shove it back into the depths of my mind. For some reason I let it come out last night and it made me appreciate her that much more. She has taught me how to love without fear, give myself completely to someone, and that I was put here for a reason. God chose me to be her mom and I am so grateful.
Please hug your babies, smell them, feel them and love them.

petechiae and bruises

2009-08-28T21:29:00.000-07:00

I had to take Kayla down to the hospital today. I noticed that she was bruising a lot and I found petechiae on her back. ::sigh::
Petechiae (pronounced PA-Tee-key-eye) are red or purple dots that form when there has been a broken capillary vessels.
There is this list that we were given when she was diagnosed. It was actually a huge binder full of information, ways to keep track of chemo, explains what the names of chemos she is going to get and their side effects.
Anyway, in the binder there is this list "When to call the Dr."
Petechiae is one of the "things" that you have to call the Dr for. Since I already knew that her counts were down I figured her platelets had gone too low thus causing the petechiae. There is only one other time that she got petechiae, her platelets were only 8. So if she was to injure herself and start bleeding, her blood wouldn't have clotted. That is why is to important to call right away.
We get to the ER to check in (the clinic closes early on Fridays) and went to sit down. Well it was blazing hot outside, the sun was shining directly at the benches outside. So I had to sit in the section that is reserved for people that are brought in by the police. The head nurse in charge contacted the ICU and told them that we were there. So we were sent up to the floor where they do transfusions and surgeries.
(There was this "pass" that we were given when Kayla was first diagnosed. It says something like "This child CANNOT sit in the waiting room, he/she is to be taken back to an isolation room." something to that affect.
Back to my story, she had her blood drawn and within 10 minutes her counts were back. If you have not had to sit and wait for counts to come back then you do not know how long the wait can be. We have waited 3 hours before. The reason it came back so fast is because her oncologist was the Dr. on call on the ICU. He had them "STAT." I turned out that her platelets were 48 (they transfuse if they are 20 or lower) and I found out that her ANC is 400!!! I was so happy to hear that! She was 100 two days ago. As far as the petechiae, they said she could have been playing too rough (probably the cause) or it just happened because it happened. I don't really get too many answers when it comes to my child's ailments.

She's home!

2009-08-26T18:45:00.000-07:00

This morning Kayla's ANC went up to 100, so she was free to go.
She was able to go to "school" before Jimmy arrived. She was very happy about that, she misses school and can't wait to start home school.
The Dr. also said that she doesn't have to have the blood thinner anymore. I am relieved b/c now I don't have to give her shots at home.
We hadn't been home for about 5 minutes and she hurt herself. She turned her head and smacked it into the corner of the counter.
It was purple before I even had ice in the baggie.
awesome.
She fell right back into her routine. She is bossing James around, yelling at him, hogging toys.
Since her ANC is so low I am going to keep her inside for a few days.
Better to be safe than sorry.
She goes back to the Dr. on Monday to get chemo, so I am really hoping that all of her counts go up.
Oh and we never got an answer as to why she had a mini stroke. They gave me a few reasons that "could" have caused it. It frustrates and scares me at the same time.
Jimmy's radiation consultation is tomorrow, he will find out the day that he starts.

Here are a few pictures from the hospital:

She was very happy with all the Ritz crackers her nurse brought her.

These are all of the electrodes that were glued to her head. They were looking at her brain function. She had to keep her eyes closed b/c they could tell when she blinked. Also we had to be quiet b/c she needed as little stimulation as possible.

James got to visit! He came on Friday which is Movie Day!!! They have a little "theatre" down stairs. They have popcorn, juice and lollipops. We got to watch "Space Buddies." Kayla mothered him the whole time. She must have gotten up about 5 times to get him more popcorn.

We're still here....

2009-08-25T11:27:00.001-07:00

Today is day #11 in the hospital. The only thing that is keeping us here is her ANC. (ANC = immune system, so basically she doesn't have one right now) It is still 0. The reason that it is so important for it to go up is b/c if we take her home right now with 0 ANC she will definitely get sick and have to come back. No ifs, ands or buts about it. They *think* that it will be up by Thursday but that is just a guess.
They still don't know why she had a mini stroke. Which is frustrating and scary at the same time. And she is still on blood thinners. I am giving her the injections now. They want me to be able to do it at home. I have already given her shots at home so it is no biggie. It just upsets me b/c it stings when it goes in and makes her arm sore for a little while.
Her appetite is down but I know that it is b/c she hates the hospital food, and I don't blame her one bit. It's o k food but nothing compares to food from home.
Jimmy has his radiation consultation on Thursday, and we will find out when he starts. We are kind of freaking out b/c we don't know how we are going to pay for gas. It is going to be 3-4 weeks, everyday. ugh.
That's all the info I have for now. Not too much has changed.

Thanks again to all of you that have prayed for us. It means a lot to our family. I will update again if there is a change. Hopefully my next post will be about us being at home! **fingers crossed**

Kayla had a mini stroke

2009-08-21T11:04:00.000-07:00

I am at the hospital right now. Yesterday I got a call from Jimmy and he said that Kayla could not use the right side of her body. I instantly thought that she had had a stroke. I came down as soon as I could and she was getting an EEG. She had 25 cords glues to her head so that they could test her brain waves. She had to lay still and keep her eyes closed. She also had to get an MRI and and EKG. They have taken numerous blood samples as well.
They didn't really have much to tell me when they did rounds this morning. The dr. did say that they saw something on her MRI and it looked like the blood was being blocked. So she is now on blood thinners. They are pretty sure that she had an ATI. I can't remember what the abbreviation stands for but basically she had a mini stroke. She could not use the right side of her body. We had to help her walk b/c she had almost no control over her right leg.
Today she is much better. She is actually in "school" (hospital school) so she is happy. She doesn't have much of an appetite either. Her levels are still very low and her ANC is still 0.
I don't know much more, the Dr said that she and the neurologist team are going to get together and look at all the test results to see what it is that happened.
I wish I had more information but this is all I have for now.
I can't get on any social networking sites from the hospital computer so I will thank you all here for you kind thoughts and words. I can see your comments in my e-mail. I love you all too and it is nice to know that there are family and friends out there thinking about us and praying for us.

This is what it looks like when platelets are low

2009-08-15T11:19:00.001-07:00

Kayla's counts have been pretty low for about a week.
On Wed. the Dr. said that everything was low.
This is how I know that her platelets are really low. I have to give her chemo shots at home.
AraC shots to be exact. The first picture of her arm and that was Thursday. The second picture is of her thigh. That was yesterday's shot.
Last week I had to give her shots and it looked normal. After an hour or so I could barely find the injection site.

She is in the hospital right now. She had to go last night b/c she developed a fever. When they got there she was 98.3. They think that the fevers are chemo related. Her ANC (immune system) is pretty close to 0. and her WBC (White Cells) are really low too. I think Jimmy said .7

:::::sigh::::::

2009-08-12T20:01:00.000-07:00

What a long day.
We did the usual morning routine and made it to the clinic at 7:30.
They weighed her, took her height, blood pressure and temperature.
Then it was off to the procedure room so that she could get accessed and have her blood drawn.
The counts came back and everything was low.
::::sigh::::
It turned out that she was going to need a red cell transfusion.
So we go back to the infusion room and wait for the nurse to come and give Kayla her AraC and take more blood for a type and cross. (to see what blood type she is)
So we go over to the hospital for her transfusion and spinal tap.
And I do have to say that she was doing very well with not whining about not being able to eat.
Just goes to show that if you actually sit your kid down, look them in the eyes and give it to them straight, they might possibly understand and cooperate.
Anyway they start her blood and she picks out a movie to watch.
"Monster House"......She picks it every time :)
She started getting a little tired.
I was hoping that she would fall asleep (the transfusion was 3 1/2 hours long!)
She didn't fall asleep, but she was such a good girl.
Dr. K comes over and it is spinal tap time.
We do it the "bear hug" way. Which is her sitting on my lap, resting her head on my chest and her arms hanging around my waist.
Lucky for me that in doing the spinal tap this way I have a perfect front row view of the needle in my daughter's spine. I get to watch the spinal fluid drip out into the tubes that the dr. holds. Then he get a syringe of chemo (it looks like pine sol to me) and injects it into her spine. Then that part was done.
They hooked her back up to her blood and we re started Monster House.
Like I have said in previous posts, the medicine that they give her to calm her down and help with the pain make her act strange.
She slurs her speech and asks me what happened and where she is.
Sometimes she gets aggressive and lucky me, today was one of those days.
She fought me when I was trying to wash her hands after she used the restroom, she fought me all the way through the parking lot to the car. I couldn't remember where I had parked the damn car.
Then when we get to the car she starts throwing things out of the door and is yelling at me to get her McDonalds.
We get going in the car and she will not stop whining.
I have figured out a way to soothe the beast........Spice Girls!!!
We listened to "wanna be" about 2 times before she passed out.
She wasn't even awake to eat her happy meal.

Today was long and emotionally draining. Not just for me but for her too :(

Augmented Delayed Intensification Day 29

2009-08-06T07:57:00.000-07:00

Yesterday was by far one of the longest days yet. We had to get up extra early (5:30) because Jimmy had his PET scan at 8 and he had to check in at 7:30. So we got to the clinic an hour before it opened.
The nice part was that she was first, so we got our choice of where to sit in the infusion room.
So they took her blood, she picked a toy out of the toy closet and we sat in the infusion room.
It had been about an hour and a half since they sent her blood to the lab and Kayla asked me (told me) to go get her some funyuns from the cafeteria.
On my way back I ran into one of her nurses and she said "Oh her levels just came in!"
She told me that Kayla's ANC was 1100!
It went from 422 to 1100!
So she was approved to get her chemo. She got AraC and Cyclophosphamide (CPM).
With the CPM she had to have 4 hours of fluids after. So we knew that we were going to be there for a while.
Because by the time her levels came back and her chemo was started we had already been there for almost 4 hours.
We were moved to an examination room to see her Dr. and he said that he wanted to do her spinal tap that day. I told him that she had eaten. He told me not to feed her anymore and that he would do her spinal tap at 5.
Surprisingly Kayla was not that mad about not eating, I was expecting her to be really mad.
She got about 2 hours of her fluids and they told us to go across the street to the hospital so that she could finish getting her fluids and go get her spinal tap.
We went over there, got checked in, got her hooked up and waited for her chemo to be drawn up so that she could get her spinal tap.
She got Ativan to relax her and she got methotrexate in her spine.
As always she was loopy from the ativan. She was asking where she was and if she had already had her spinal tap.
The worst part (for me at least) is after when she is loopy, because she has to lay on her back for 30 minutes. I asked why she had to lay down and it is so the medicine can distribute through her whole spine.
After our 30 minutes we left and headed home.
ugh it was such a long day. It is a lot of "hurry up and wait" kind of stuff.
Oh and she also has to take Thioguanine which is chemo in a pill form.
And to top the chemo sundae with a cherry I get to give her shots at home!
AraC shots to be specific. It's not the shot part that she doesn't like, it is the fact that the chemo stings when it comes out of the needle.
It upsets me.
So that was our day.
What did you do?

Chemo day 7/29

2009-07-29T14:17:00.000-07:00

Today was supposed to be a "long" chemo day.
So in preparation I got coloring books together, crayons, her fav. blanket and some waters. I put it all in her backpack on wheels. She likes to pull it around.
I made sure that I got a few magazines and even brought a Harry Potter book in case I ran out of stuff to read.
I didn't sleep well at all last night.
I woke up pretty much every hour on the hour. I was already awake when my mom came in to wake me up.
I was so tired that I had the shakes.
Another wonderful thing about chemo day is waking Kayla up. I always remind her the night before that she will be getting up early and to try her hardest to not be in a bad mood.
Mom dressed her while I got dressed.
We brushed our teeth, I heated up her cheeseburger and we were off.
Yes, you read that right. This has become a routine. She really likes cheeseburgers, especially for breakfast. And since McD's doesn't make them in the morning we have to make sure that we pick some up the night before.
Anyway, we got to the office a little early and we were the first ones there. I like being the first.
I got Kayla some funyuns and then she fell asleep.
Around 10:30 I finally got up to ask if her counts had come back b/c they couldn't start the chemo w/o knowing what her counts were.
The chemo that she was supposed to get was an hour long chemo through the IV. Then AraC and then 4 hours of fluids. They also wanted to do a spinal tap but there was no way in the whole wide world I was going to listen to her whine and cry about food.
Well her counts came back and her ANC is only 422. They will not administer chemo unless the ANC is 750.
So we get to go back next week and try all over again.
Only this time we have to get up even earlier b/c Jimmy has his PET scan at 7:30 so he has to drop us off at 7. awesome.

Emotions swirling

2009-07-27T11:24:00.001-07:00

Even though Kayla has been off her steroids for almost a week she is still very agitated and hungry. Once she thinks of a food that sounds good she wants it NOW. She will whine and cry and whine and cry until she gets her way.
It is that exact reason that I am dreading chemo on Wed. She is scheduled to get a spinal tap on that day too and that means she can't eat. awesome.
She will be getting 4 hours of fluids before they even start the chemo. We call days like this "long chemo days."
Kayla has also been getting restless and wants to go to the store. She can't go though. Last week her ANC was under 750, which means that if we absolutely have to take her somewhere she has to wear a mask. She wants to go to the grocery store and go feed the ducks at the lake. For all we know her counts could have gone up but have a new mantra that I live by "better to be safe than sorry."
Sorry I haven't posted very much, there really hasn't been much to say.
She is sitting on the couch right now asking me when Daddy will be home with her funions.
:::sigh:::

I hate Daddy!

2009-07-20T11:41:00.001-07:00

Last night Kayla was having one of her roid-rage food cravings and wanted popcorn and cheese chips (cheesy pringles.) We were in the middle of making dinner so it wasn't exactly the perfect time to go to the store.
But the steroids didn't care.
They were hungry.
No matter what we said she would not stop whining and crying for popcorn and cheese chips.
So right after Jimmy was done cooking the steaks he went to get her what she wanted. He didn't even get to eat first.
Well while he was gone Kayla decided that she was going to write him a letter, telling him exactly how she felt about how long it took him to leave.

In case you can't read that it says:

"I will never like my Daddy hate Daddy"
Unless you have experienced the hell that is a child on steroids then you wouldn't understand. The cravings for that one exact specific food are so intense that it takes over her whole life.
With the food cravings comes the anger. She has told us that she hates us and lots of other nasty things she wouldn't have said otherwise.
When Jimmy got home I showed him the letter and it made him laugh (not in front of her) He didn't take it personally and I actually put it away to save it.

Funions

2009-07-18T08:44:00.000-07:00

If I have funion breath in my face one more time I am going to barf.
Funions are Kayla's steroid favorite. I know that they are pretty bad for you especially if eaten in mass quantities.
But she loves them.
I actually had to listen to an almost 2 hour scream fest about them.
We were trying to stand our ground but our ears started bleeding and we gave in.

Kayla had chemo on Wednesday and so did Jimmy. It was actually his last chemo session. Well so we were told. He is going be getting another PET scan to see the size of the tumor and see if there is any activity. He is supposed to start radiation sometime after that.

Kayla is doing o k. Her steroids are really getting to her. She will walk into the kitchen and go through all of the cupboards and the fridge. She will then come and tell me that there is nothing to eat. I tell her that there is a ton of things to eat and to choose one. So we go through the kitchen together. I get a no to everything.
***light bulb goes on***
She is saying that there is nothing to eat b/c there are no funions.
:::rolls eyes:::

nausea and all that stuff

2009-07-09T19:24:00.000-07:00

Well Kayla had her chemo on Wednesday.
I was prepared! I brought her blanket, new coloring book, new crayons, a few bottles of water and a snack.
Mom was going to bring Kayla a double cheeseburger for lunch. (a deal they made without my prior knowledge)
Surprise surprise they had her chemo ready when we got there!
They were able to use her blood level results from Monday.
We were out of there by 10! A record!
A normal chemo day takes a lot longer and we don't get out until 2 or 3.

the only thing that sucks is that she gets extreme nausea afterwards.
She hasn't vomited or anything but she sits next to the toilet for a long while.
I asked her Dr. if there was anything stronger than the Zofran that she has. He said the best thing to do is make sure that I give her the Zofran around the clock if she asks for it or not.
ugh.
I forgot the camera this time so next week I will not forget the camera.

Chemo for 7/6

2009-07-07T08:05:00.000-07:00

Yesterday was a long day.
Not literally but mentally.
I took Kayla by myself for the first time. Jimmy didn't feel that well so it was just me.
Kayla got a PEG, which is a shot in each leg.
It's just another form of chemo.
Well I forgot that we have to wait around for 2 hours afterwards so that they can monitor her to see if she has an allergic reaction. ugh.
Kayla was pissed.
I had been promising her McDonald's for hours and now we had to stay even longer.
I know that it is bad that her steroid craving is double cheeseburgers but that is what she wants.
I have had a hard time explaining this to people, they don't understand why I don't put my foot down and make her eat fruits and vegetables.
Here is how her Dr. explained it to me:
"It is one of the most intense cravings when someone is on steroids, what they want is what they want. If she wanted a peanut butter and asparagus sandwich then that is what she wants"
I have seen and experienced the roid - rage the ensues when she does not get what she wants when she wants it. (She eats just about every hour)
In the hospital the cafeteria was late on bringing her quesadilla and she just about tore the room apart. She also told me that she was going to hit me in the face and break my glasses. nice.
So on the way home we went through the drive trough and I got her 3 double cheeseburgers a large fry and an apple juice. Thinking that she could have the other 2 at home.
Well the steroids took over and she ate 2 double cheeseburgers, the large fries and her juice!
Thankfully she is only on her steroids for a week then off for a week then back on for one more week.
Other than that everything is quiet and good.
Just the way I like it. :)

Kayla gets chemo tomorrow and I plan on taking pictures so you can see what a typical chemo day looks like.

Chemo for 7/1

2009-07-03T09:31:00.000-07:00

Wednesday was Chemo day for Kayla. I was upset that day b/c it had been three weeks since she had had any and she was feeling pretty good.
She got her Vincrystine and a few others.
We had to high tail it across the street to the "big hospital" so that Kayla could get her spinal tap.
So she got her intrthecal methotrexate and then she had lay down for 30 minutes so that the medicine could be distributed evenly.
Usually when they do her spinal taps they give her ativan through her port a cath. So afterwards she was pretty dizzy and must have asked me 10 times where she was.

After her 30 minutes of laying down I took her (in a wheelchair) to the cancer center to get Jimmy.
he had about 45 minutes left so we had to wait.
Kayla slept the whole way home.
We picked up some double cheeseburgers before we got home and offered her one.
Surprisingly she said no.
She called me into the bathroom and said that her stomach hurt and she was going to throw up.
So I sat on the bathroom floor and rubbed her back.
Then I had an idea that worked well when I had nausea during my pregnancy.
I took her outside and we practiced breathing in through our noses and out the mouth. She said it didn't help, but she didn't throw up.
She wanted me to scratch her back so I sat on the couch and scratched her back. I was just talking to my mom and watching the news when Jimmy pointed out that she has fallen asleep.
We carried her into her bed and decided not to wake her to take her pills.

I asked the doctor about this new road map. It looks very intense. She had chemo Wednesday, then we have to go back on Monday so that she can get a PEG.
A PEG is a shot in each leg (a the same time of course) it is just another form of chemo.
And then we go back next Wednesday for her chemo.
I asked him if he expected her to get sick and he said that in about 2 weeks she should start feeling it.
He also said that for the next 6 months things will be a little hard, there might be hospital stays and transfusions.
But after that it will get easier. She will be getting the chemo less frequently.
I cant wait for 2010 to ring in.......

Picture Share

2009-06-29T18:41:00.000-07:00

This is James.
He turned 4 last weekend. He loves his sister and is a very sweet boy.

This happened just this past weekend
Kayla found Auntie Sheree's green make-up stick.

This is from a week ago.
I was going to bed and I saw Roo sleeping on Kayla's bed.
So sweet <3

We went to the Village today. It's like the "center" of our town. The grocery store is there and a bunch of touristy shops.
We thought that since Kayla hasn't had chemo for close to 3 weeks that it would be ok to take her out. This is the train ride that they went on.

She got her cheeseburger while we were out.

Little Miss Attitude

2009-06-27T15:39:00.000-07:00

It has been a pretty uneventful couple of weeks. Thank God.

It is due to the fact that she hasn't had chemo in about 3 weeks. The reason that it has been so long is b/c of the "road map" that she is on.

Kayla and Jimmy will both be getting chemo in July 1st.
I'm actually really really dreading it.
I hate seeing her lay down b/c her stomach hurts.
Or that she is too tired to play.
Take it this way....When she feels bad I feel bad.
She is also CONSTANTLY hungry!

Her cravings differ. More times than not she will want toast. If it's not toast it will be mac and cheese. ugh.
All I can say is thank the Lord that Easy Mac was invented.
She only likes the cheese off the top of the pizza. She refuses to eat the whole piece.
I have to cut her toast a certain way or she wont eat it.
Amazingly she can finish a whole can of spaghetti-o's in one sitting.

Bed time is hard with Kayla and James. They have this way of getting each other wound up.
It is difficult to discipline her as well. Time out is a joke and I end up making myself more frustrated.
I can't spank her either b/c she could bruise or possibly bleed. I actually have a great story to go with that....

A couple of months ago in one of Kayla's appointments her doctor mentioned that I should not physically discipline her in any way.
Kayla was sitting in the room too and she heard it.
Yesterday she stuck her tongue at me and as I went to grab her to put her on time out she says "WAIT!!!!!!!!!"
Me: "What?"
Kayla: "Remember? You can't spank me. Only James"

:::::rolls eyes::::::

Dear God,

2009-06-23T08:17:00.001-07:00

Hey God. This is Sandra.
I know that you are probably really busy, I just need a few minutes of your time.
Now I am sure that you have your reasons for childhood diseases and all but I would love to know the reason.
I want to know why my little girl has to take poison that makes her hair and eyelashes fall out.
Lord, it breaks my heart when she plays with my hair and "can't wait" until she has beautiful hair again.
What am I supposed to tell her?
"Well honey that isn't even going to happen for 1 1/2 years maybe longer"
She has some bruises Lord and I am really hoping that she wont have to get a platelet transfusion.

Also Lord, there are quite a few children that are in the hospital and they don't even get to be in their homes because they are so sick. Could you please pay extra attention to them? An especially their parents?
At times its almost too much for my heart to take in. I watch these kids with their strained smiles and forced movements, as they battle with life day in, and day out.
We are absolutely confused by all of this. We are scared and sad.
Lord, I am so sick of seeing my daughter cry. She should be smiling, playing in the dirt, petting dogs and being a kid.
Instead she is confined to the house (weather depending) she has mood swings and her joints ache a lot. She also doesn't get to go to family functions and I think that is what makes me saddest of all.

These illnesses rob kids of their youthful innocence…. The very last thing that should ever be taken from someone. Its not fair to have to grow up so fast, laugh so little, and look death square in the eye.

I propose instead of children getting sick or dying, how about you give these afflictions to criminals? You see, we would free up jail space, tax dollars, and rid the world of corrupt people….win, win, win.
00
I know that you are really busy, thank you for hearing me out,
Sandra

We were only going for an EKG.......

2009-06-18T16:51:00.000-07:00

Kayla was scheduled for a EKG yesterday and Jimmy was getting chemo.

She only needed the EKG to see how well her heart was handling the chemo. So Kayla and I went to her EKG appointment and Jimmy went to the cancer center to have his blood drawn for labs.

Kayla's EKG only took about 20 minutes. The technician turned on Aladdin to distract her from what the other one was doing. Yeah......not so much. Kayla could not have cared less about the movie. But she did pretty well and stayed still.

So we go down to the cancer center to sit with him while he gets his chemo.

We get in the exam room, and after the doctor was done Jimmy and I made the same comment.

"The circles under Kayla's eyes are really dark"

I had also noticed some bruises on her back so to err on the side of caution I called the clinic. I explained what I was seeing and the asked us to come on over.
Kayla and I took the shuttle (she was thrilled) across the street to the clinic.

They take her labs and see that her red cell count is low and tell me that Kayla has to go to the hospital and get a transfusion.

Long story short, our day was far longer than we anticipated. We got home at 8 and were pooped.

Kayla has a new addiction. Don't stone me for this but her addiction is McDonalds cheeseburgers.
I know I know I know, ok?
It is all that she wants breakfast, lunch and dinner. She refuses to eat anything else.
We have 2 double cheeseburgers left from yesterday and Jimmy said that he doesn't want her to eat them anymore.
I am afraid of the tantrums that are to come.

How I feel right now

2009-06-12T09:51:00.001-07:00

(Kayla 2 weeks before diagnosis)

Yesterday Kayla finished her 4Th road map. She had Vincrytstine and Methotrexate.
So not too bad. I just have to push the fluids so that her little kidneys can filter the methotrexate properly.

Yesterday at the clinic I heard singing and realized that it was the nurses. They were singing some song to a girl that had just had her last chemo treatment. I looked around the infusion room and I noticed that the other parents were not smiling. It is really hard not feel envious and jealous. I want that to be my daughter and I could see the same feeling in the other parents faces.

It could be that I am so sad b/c it is that time of the month but all I want to do is cry...

I cry because my poor little baby wont be graduating with her kindergarten class

I cry because when I scratch her back I can feel every vertebrae

I cry because I want her to swim in the lake, pool or deep creek

I cry because I know that we still have a long way to go

I cry because I see other healthy children and instantly feel envious

I cry because she has to get spinal taps and bone marrow tests that make her sore for weeks

I cry because I don't want James to think that we love Kayla more b/c we are always taking her to the Dr. and leaving him with his aunt

I cry because Kayla cries to go into town, and she can't because we are too afraid that she will come in contact with germs

I cry because I have no control over my own life

I cry because I can't look at pictures of her before her hair fell out. It hurts too much

and I cry mostly because this is not what our life is supposed to be....

I sobbed when we left the clinic yesterday because I am so confused about her new road map. She is going back on steroids and getting a few new chemos that I know nothing about. (I am going to google them)
I am worried about the side effects of the new chemos.

Our car is a POS. Something is always leaking and it makes funny noises. There is no A/C and Jimmy will not let me take Kayla to chemo by myself b/c he is afraid that the car will break down and I will not know what to do.

Don't get me wrong, Kayla is doing good.
Jimmy is too.
James is turning 4 on Sunday.
I'm losing time with my kids b/c of cancer and I resent it for that.

Kayla got her nails done!

2009-06-08T08:24:00.000-07:00

Well let's back up a little.
Kayla had chemo on Monday the 1st.
She also had a spinal tap. I don't know how much ativan they gave her but she was in outer space.
The poor thing was not allowed to eat because of the spinal tap. So she got all her chemos and levels at the clinic which took until about 1 in the afternoon.
We crossed the street to the big hospital and waited forever for her spinal tap to get done.
By 5:00 we were out of there. She was STARVING and sure let us know about it. She was very specific in what she wanted. A cheeseburger with bacon. Ok cool.
Well traffic was horrendous and we were trying to get to our exit so that we could stop at Jack in the Box.
After we got our food we headed back up the mountain and Kayla was still out of it after finishing her whole burger and a drink.
Needless to say when we got home she slept a lot.

On Friday the 5Th Kayla got to go to the nail salon! I made the ultimate mistake and told her in the morning about her 4:30 appt. I must have gotten asked at least 1,567,891 times when we were going to go.
When we got there she was so excited. I told her that the beauty salon is a fun place and that everybody there is really nice, and not to be afraid to talk to them.
When we first got there she sat down and scoped the place out.
Then when she felt comfortable she started wandering around looking at the spa chairs and all the pretty candles that were around.
She got the attention that she usually gets and started feeling better about the whole thing. Her nail lady Laura took her to pick out her colors and she chose hot pink with purple sparkles on the top.
Ah a girl after my own heart :)
She was delighted and felt beautiful.

As far as her health goes she is doing pretty good, as far as fever goes. I do everything in my power to make sure that she doesn't get one.

Jimmy is good. He is a little sore from his neupogen shots. They make his joints and bones hurt a lot.
In case you didn't read in a previous post, neupogen shots are a white cell booster and his Dr. prescribed him 7 shots after his rounds of chemo. He is far less than thrilled about it.

Other than that things on the home front are same old same old.

Kayla has the flu

2009-05-27T15:37:00.000-07:00

It is not the swine flu, just the regular one.
I am a little nervous about her being home when she is still sick. The dr.s said that because she isn't having a fever, she's eating and acting normal; that she is free to go. They actually discharged her today and I am little surprised. They said that it was a virus and there really wasn't anything they could do. She is back to her normal self, loud and always wanting something to eat.

Jimmy had his surgery today. Turns out they were able to get the tube to go back down where it is supposed to be. That is good news, because if they wouldn't have been able to get it back down he would have to get a new one on the other side.

So everything is pretty much back to normal. The living room is getting torn apart as I type this. James is crying because "Kayla said I don't have muscles."
It has now become apparent that no matter what Kayla or James go through, they are always going to fight.

It's becoming a weekly ritual

2009-05-26T08:28:00.000-07:00

Kayla is in the hospital. Stay #11. This time seems worse than all the other times. She has a pretty bad cough and had a temperature of 103.1 (the highest she has had since diagnosis.) Jimmy is there with her b/c I have a cough and I don't want to get any of the other kids sick.
Jimmy has his port-a-cath surgery tomorrow. They did a PET scan and found out that the tube that goes down into the vein above the heart was going up instead of down. So if they can't get a tube to go back down, they will have to put one on the other side. *sigh*

I am so sad today. I am sick and tired of bad news. I am ready to hear some good news.

This is Kayla and our cat names Roo. Kayla loves her and always asks me if Roo misses her when she is gone. Of course she does.

The wind has been knocked out of my sails...

2009-05-21T10:25:00.000-07:00

So Kayla was hospitalized on Sunday by what else? A FEVER! What a surprise.
She got out yesterday and she got her chemo while she was there. She is doing good today, not surprising though since the new chemo that she is getting makes her appetite go down for a few days.

I also went with Jimmy to his Dr. appt yesterday. I was so nervous I though I was going to have an anxiety attack in the waiting room.
It turns out that the tumor has shrunk a little. It used to be 11 cm x 14 cm. It is now 8 cm x 3 cm. The doctor said that Jimmy will be getting radiation after his chemo. he has 4 more chemo treatments (2 a month, which adds up to 2 months) and then he starts radiation. He will have to drive to the hospital every day for 6 weeks. He will also be getting the proton gun. *sigh*
There goes our summer.

Other than that I have absolutely no idea how I get up in the morning. I know that I am not the one with cancer but it is really hard to be the strong one all the time and. I have to remember all kinds of medications, appointments and the names of chemo. Some examples.... Mercaptopurine, Methotrexatem, Vincrystine, Dexamethasone. Yeah I have to know those and when she last got them and all that fun stuff.
That's enough self pity for now.

Lately

2009-05-16T07:38:00.000-07:00

Things have been calm and nice (knock on wood). Kayla drinks water all the time and actually prefers it, which is a really good thing. Her appetite has me all confused though. For instance she went through a Budget Gourmet Spaghetti phase and seriously she would eat one for breakfast, lunch and dinner. Sometimes even having one as an in between snack. Then all of a sudden she didn't like that anymore and she wanted sausage and a fried egg. ugh.

So now we are stuck with a bunch of frozen dinners that she tells me are "gross" and I smell like maple sausage more days than not.
Her attitudes are way out of hand as well. The other day she announced that jimmy was not her father b/c he would not let her stir boiling noodles. See I let her help with putting ingredients in the bowl but I don't let her help if the food is on the stove. She just wanted to pour the noodles into the water, he said no and she was PO'ed.

Jimmy is doing good too, as far as his chemo anyway. He got his PET scan last week and is eagerly awaiting the results. He is afraid that the tumor will shrink too fast around his artery and make him bleed to death. This is not just some irrational fear, he was told that it could happen. He would just love some peace of mind.
We did however find out that they did not like the placement of his port-o-cath and they are going to be doing surgery on Thursday. That means that they have to cut his scar open and cut the sutures that are holding the port-o-cath to his muscle and place it where they want it. To say that he is less than thrilled is an understatement.
We go down Monday for Kayla's chemo, Tuesday for another kind of chemo, Wednesday for Jimmy's Chemo and Thursday for Jimmy's surgery. All without an A/C. awesome.

I HATE CANCER

2009-05-06T09:28:00.000-07:00

Well Kayla just got done with hospital stay #8. Of course she developed a fever again, so Jimmy took her this time. Good thing that she went though b/c they found out that her kidneys weren't filtering the chemo very well. So she had to have tons and tons of fluids pumped into her to help them along. Ugh. This is a new chemo and she will be getting it every 10 days. One of the dr.s told me that some kids only have a kidney problem the first time and then they are good. I hope that she is one of those kids.

I am constantly taking her temp. I am so scared that she will develop a fever and she will have to go back. It's not so much that she has a fever it's the trip to the hospital. Because more times than not it is late at night. It really sucks when that happens.

Other than that she is doing pretty good. We are taking it day by day.

Jimmy is good. He is actually at his chemo appt. right now. He has 3 treatments after this and *hopefully* he will be done. We won't know anything until he gets his PET scan.

Update

2009-04-19T08:29:00.001-07:00

I know that it has been forever since I have updated. Life has been a tornado, hurricane and earthquake all wrapped into one.

Kayla is in the hospital again. This is stay #6 since she was diagnosed in December. She had to go in b/c her ANC or Absolute Neutrofil Count was 0 and she had a fever. ANC = Immune system. She doesn't have one right now. So this time they are not going to release her until her ANC starts going back up. They said that it could take a week to 2 weeks. awesome.
She is back down to her original weight and wears 3T. Other than that her appetite is coming back and she actually eats more than saltines.

Jimmy is good too. This last round of chemo really kicked his butt. He has been throwing up almost every single day.
He has 3 months of chemo left unless there is some tumor left and then he will have to get radiation.
Kayla has about 19 months left. Give or take. Like this week her Dr. decided to skip her chemo and bone marrow test b/c of her ANC. So that added a week onto her treatment. I am sure that this wont be the only time.

March 4, 2009

2009-03-04T16:52:00.000-08:00

It has been cloudy and windy all day. Kayla insisted on a bike race so I begrudgingly put my jacket on and went out.
She won. :)
Tomorrow is chemo. aka getting up at 5:30 to drive 77 miles. :(
On a happier note, I am very excited about this Saturday!

Oh and here is Kayla today. Grandma let her pick a hat to wear.

Somebody dressed herself today

2009-03-03T16:08:00.001-08:00

I had to share because she is so cute! Kayla picked out her clothes and dressed herslef this morning. I think the rain boots complete it :)

We spent the weekend up at the house!

2009-03-02T14:36:00.000-08:00

It was so nice to be up on the mountain! The weather was gorgeous and it felt good to be there.
Sorry it has been so long. Kayla had to be hospitalized again.
She had a 103 degree fever, which means a minimum 2 day stay b/c they have to do blood and urine cultures (it could be an infection)
On night 2 she still wasn't showing one sign if illness, so on day 3 she got released. They didn't know why she had been having such high temps. I have been so anxious every day since then because I am worried that she is going to get a fever again. (I hate staying in the hospital)

Things are going good with the house. They say another 2 weeks and we should be home :) I cannot wait. I LOOOOOVED being up there this past weekend. It was nice to see all the trees and smell the clean air.

This Saturday is a benefit breakfast. I hope to see you there. I would love to meet people that have donated or some words of comfort.

Kayla was in the hospital

2009-02-14T14:04:00.000-08:00

She had a clinic appointment on Wednesday and had a low grade fever (99.3) and the doctor said that if it goes up to bring her in.
Later that night she went up to 100.8 so we had to make the 2 hour drive to Loma Linda so that she could be admitted.
We spent two days there and they found out that she had a fever because of the chemo and that she was dehydrated.
She hardly eats anything. I offer her food all day long and she always turns it down. We got some chocolate Ensures but she doesn't like those.
I'll tell ya, it is so heartbreaking to be at the dinner table eating and she is in the living room because she is not hungry. It makes me very sad.
Other than that we are all doing pretty well.
Jimmy fells fine most days and he still has an appetite.

Superbowl Sunday

2009-02-02T11:17:00.000-08:00

My favorite thing about SuperBowl Sunday is the food! LOL
Jimmy made ribs and my grandma made shrimp cocktail. It was all very good! Jimmy was into the game but I mostly watch for the commercials. Plus Kayla wanted to ride her bike a lot so I wouldn't have been able to watch it anyway.

Kayla now knows the awesome-ness that is the Ice Cream Man! I looked at the packaging that her ice cream came in and it was nice and sealed so it was ok for her to eat. She thinks that the concept of the Ice Cream Man is great! She told me "Mommy, he can come to out house and we can but ice cream from him!"

Kayla is doing well since her surgery, she is only a little bit sore. I *think* that Kayla gets chemo on Wednesday but I am not sure.
Jimmy gets chemo on Wednesday. He is doing well also.

Kayla's new port-a-cath!

2009-01-30T15:40:00.000-08:00

Tuesday Kayla couldn't get chemo because her white blood cells and her hemoglobin were down. So her doctor decided to make her port-a-cath surgery appointment. Jimmy already has one so I wasn't too worried. So we made the appointment the surgeon said that if her levels were not high enough, that she would not go ahead with the surgery.
Wednesday we got Kayla a new bike so that she could work off some of the weight that she had gained when she was on steroids.
She was so excited to ride it and couldn't wait to get her pads and helmet on. She did about 50 laps around the patio before she needed a rest.

Today she got her port a cath. We spent the night in Loma Linda b/c Kayla's surgery time was 6 AM. From my grandma's house it takes 2 hours to get to Loma Linda. That means that we would have had to get up at 3 to get out of the house on time. So anyway we spent the night in LL and got to the hospital in time. They needed to test her blood to make sure that her levels were high enough to do surgery and we had to wait an hour and a half for the results. Five minutes before the surgery time they said that it was a go.
Kayla now has her port-a-cath. No more Picc line!!!!! woo hoo!
She is very sore and doesn't want us to touch her or help her do anything. She should fell better in about a week or so.
(the orange stuff on her in the picture is iodine)

Sunday 1/25

2009-01-25T11:33:00.000-08:00

James stayed with us this weekend! When he first walked in he stared at Kayla and was surprised by her shaved head. He was over it in about 10 minutes though. It has been about a month since the 4 of us were in the same room together and it feels nice. I am also noticing the differences between James and Kayla in the sense that Kayla is on chemo and James is not. He wants to run around and ride his tricycle and Kayla is more content to play games on the computer or do her school work.
Here is James just now, he had some chocolate cake :)

My big brother Scott made a surprise visit this morning! :) He brought down his x-box for Jimmy to play with.

Kayla and Grandma are relaxing since both of them are early risers. I love her choice of reading material! LOL

I have been really tired lately. I just can't seem to get with it. I tried drinking an energy drink yesterday and all it did was make me shaky. So I am just a slug.
I talked to my mom today and she said that they ripped up the carpet in my room and they are going to take the paneling down and paint the walls. I can't wait to go home. I miss my mountain and I miss my cat.

We were also on the cover of the San Bernardino Sun!

We are in our local newspaper!

2009-01-21T19:29:00.001-08:00

Go check it out! :)

www.mountain-news.com

Port-a-cath, bone marrow test and spinal tap oh my!

2009-01-20T19:10:00.000-08:00

So today was eventful to say the absolute least.
Jimmy and Kayla both had surgeries today. It's hard enough when either your child or your spouse has surgery. Imagine having them both go at the same time and you can't be there for one.
So my grandma went with Jimmy and I stayed with Kayla. She has a spinal tap, bone marrow taken out and had her chemo.

Jimmy got his port a cath put in as well. So now he has matching scars! One on each side. He is very sore and has to sleep elevated.

Kayla has been off of her steroids for 3 days now and I can already see a difference in her mood and her eating. She is laughing and making jokes now.

Jimmy starts chemo tomorrow and he has already asked me to reschedule it. He is anticipating being sick and not feeling well.

Jimmy's Results

2009-01-12T19:29:00.003-08:00

Today was a long long day......
Kayla had an appointment and so did Jimmy. I had my Grandma go with Jimmy and I went with Kayla. Their appointments were in two different buildings.
I had my grandma go with him because she is very thourough and takes excellent notes. I knew that Jimmy would probably not be able to tell me all that went on but my grandma took notes on a note pad and told me everything.
So he has hodgkins Lymphoma but he needs more tests to know the stage.
Tomorrow he has to go back and get a cat scan to test his pelvic region to see if it has spread down there. And then he is going back on thursday to gethis bone marrow tested and a Port a Cath put in.
A Port a Cath is the same thing as Kayla Picc line but the port a cath is better because it is right on his chest under his skin. So he can shower without me having to cover his skin.
(I already have to wrap Kayla's arm everyday when I bathe her and we go through tape like crazy)
Jimmy is obviously in shock and he is in a bad mood. I guess that I deal with things differently. He is worried about all the needles that he is going to be getting and I am just glad that it is treatable.
But that is the whole idea of a port a cath; he wont have to get IVs anymore and they just put numbing cream over the spot that the port a cath is and they can draw blood out of it and give him his chemo.

There was a photographer following us around today, he was taking pictures for "The Sun" newspaper and we are going to be on the cover of this Sunday's edition. Hopefully people will see it and donate so that we can finish remodeling the house so that Jimmy and Kayla can go home.
I am home sick and I am tired of the daily 150 mile round trips.

Kayla's new look

2009-01-09T16:07:00.000-08:00

Today Kayla decided that she wanted to shave her head. She was getting tired of hair in her food, in her fingers, all over her stuff and just falling out in general. I talked to the Child Life specialist and she said that this was one thing that Kayla was in control of and if she wanted to do it then we should.
I showed her pictures online of what she would look like and she was all for it.
So this morning we shaved off her beautiful blonde hair. I told her that hair doesn't make somebody pretty. I said "If someone is nice and happy then that is what makes them pretty, not their hair." She also keeps comparing herself to a tree, in the sense that her leaves have fallen off and they will grow back.
Here are some pics from this morning.

Before:

She said that it tickled:

She loves it!

Mommy and her beautiful girl:

Daddy and Kayla both freshly shaven:

Kayla Update

2009-01-04T19:57:00.000-08:00

I talked to Sandra today. Tomorrow Kayla gets released fro the hospital and gets to go home. Kayla will actually go to her great grandma's house for about a week, only because Sandra's parents are finishing up a remodel at the house so Kayla can come home!

We are all excited and praying for Kayla through her long road of recovery. But she is a strong and brave little girl and is fighting her cancer.

Please keep Kayla is your thoughts and prayers as she goes through this long struggle with Chemo.

A Hospital Christmas

2008-12-28T13:58:00.000-08:00

We had good Christmas. I had my family there. My aunt and my Grandma spent all of Christmas Eve and Christmas morning cooking. So the food was goooooooood. Kayla was upset that all of the presents weren't for her.
The steroids are still making her a little mean. and the chemo makes her have no appetite. She only likes cup-o-noodles.
She is getting her marrow tested tomorrow and we will see where her levels are. I am anxious to see how her body and all the cells are responding to the chemo.

Kayla's Story

2008-12-23T23:51:00.000-08:00

Kayla is a very happy, friendly and adorable 5 year old. She started Kindergarten this past fall and loves school! Every day she can't wait to get to school and play with her friends. She adores her teacher!

Over the past month or so Kayla hadn't been feeling well. She complained her hip hurt and was tired. Mommy knew that something was not right and took her to see her pediatrician. The Dr. ordered a blood test and when he received it; they ordered a second one as they thought it was wrong. Her blood count was too low.

On Saturday Dec. 20th she was taken to Loma Linda Children's Hospital where they ran a series of test. These tests were to confirm what they already knew and that she had Leukemia.

On Sunday Dec. 21st Kayla was diagnosed with Acute Lymphoblastic Leukemia (ALL).

On Monday Dec. 22nd Kayla had her first round of Chemo.

What is acute lymphoblastic leukemia (ALL)?

2008-12-23T18:00:00.000-08:00

What is acute lymphoblastic leukemia (ALL)?
Acute lymphoblastic leukemia (ALL) is a cancer of the white blood cells, the cells in the body that normally fight infections. There are two main types of white blood cells-lymphoid cells and myeloid cells. ALL affects lymphoid cells.
Leukemia cells are abnormal cells that cannot do what normal blood cells do. The abnormal cells are immature white blood cells that cannot help the body fight infections. For this reason, children with ALL often get infections and have fevers.
ALL is also called acute lymphocytic leukemia. It is the most common leukemia in children.

Key Points

Acute lymphoblastic leukemia (ALL) is a cancer of the white blood cells, the cells in the body that normally fight infections.
In ALL, the abnormal cells may collect in the brain or spinal cord, also called the central nervous system (CNS).
In cancers such as leukemia that appear throughout the body during their earliest stages, screening does not appear to be useful. Rather, children with any symptoms that suggest the possibility of ALL should be seen by their physician.
Although leukemia cells from different children with ALL often look very similar under the microscope, there are actually many distinctive subtypes of ALL.
With the exception of prenatal exposure to X-rays and specific genetic syndromes, such as Down syndrome, little is known about the causes of and risk factors for childhood ALL.