Transplant

Kami is going to have to have a liver transplant. Good news is that my brother, Jeff, is a positive blood match for Kami. He is in Pittsburgh as we speak undergoing tests to confirm compatibility. Hopefully all the tests come back positive and he can donate part of his liver. BUT, she is on the transplant list just in case he isn't. BUT it would be better if he was. The recovery for both of them will be lengthy, and Kami will have to stay in Pittsburgh for a few months. BUMMER! The latest plan I have heard is that after she has recovered enough from her transplant, she will have to undergo 2 more rounds of chemo to "clean" things up and blast any other little cancer tid-bits left behind.

I don't know why I can't make this bigger, but you can see it bigger on the kashforkami facebook page. Check out her cupcake clip...no doubt her mommy made it for her.


Kami is going to go through a bunch of tests today that will later determine whether or not she has to go to Pittsburgh for a transplant or if she can stay in Hershey and have her liver repaired at the Hershey Medical Center.

I am sorry I don't have more info and more info more often. Things change so fast and things are never 100% conclusive until a bunch of tests are done. Even then, things seem to change pretty quick. For right now, she is hanging in there and waiting for more results. Everyone pray that she can be home for Christmas.

She's back from Pittsburgh!!!!!

She went through a wide variety of tests and talked with a gazillion different people. It was a stressful/busy couple of days for them.

Kami had to have surgery this morning to put a different type of port in her chest. That went well and right now she is getting ready for chemo round #4 later this afternoon.

Kami's grandma told me some good news a few minutes ago. The Alpha Fetal Protein count, the protein making up her tumor, was at 144,000 before she started chemo. Now, it's WAY down to around 1,000!

I got to hang out with Kami a little this weekend. It was great to see her feeling better. She was playing and laughing and crawling on the floor while she was chasing grandma and the other kids.
What an amazing little fighter.

Doesn't this make you feel happy!

She is in Pittsburgh right now getting tests done at the children's hospital.

We miss you Kami!

Here's a brief little conversation Lindsay had with her girls on the way to Pittsburgh yesterday:

me: we are going to pittsburgh.

Shannon: we are going to pixburgh.

Kamdyn: we are going to pittsbird.

anyway you put it, you are going somewhere!

I am so very sorry that it's been a while since the last post. Let's see, what's new.

Kami went back to the hospital for a little to get rehydrated and receive a part of her chemo treatment. She had to stay for about a week until she got through some rough spots with some of the side effects. She developed ulcers in her mouth again and had to get a blood transfusion. She pushed through all of those and is doing better.

She wasn't aable to be home for Thanksgiving, but the docs released her for a couple of hours to be with us all at Grandma's house for a huge Thanksgiving dinner. It was great to see her with the rest of us, she's a big reason for why we are all so grateful at this time of year. She played with her cousins and sisters, ate a little teeny bit of Thanksgiving dinner, and sat on our laps. She was smiling and giggling and giving high fives.

She was discharged the next day and spent the weekend at home. Kami was at Spencer's , my son, birthday party, last night, and asked to sit closer to Spencer when she couldn't see him open his present's from across the room! She was in good spirits, but pretty tired and little cranky towards the end.

Tomorrow, Kami leaves with her sisters and Grandma for Pittsburgh. In the event that she needs to have a transplant or a more complicated surgery than the docs can handle in Hershey, she will need to have preliminary tests and work done before hand. They will be in Pittsburgh for a couple days. Her fourth round of chemo will start after she gets back.


Thanks to everyone who has helped and prayed and donated and done some much for my brother's family. It means more than you can ever know.

Auction

Kami's blog auction is going great, largely in part because she has the best friends.

There are TWO weeks left and lots of stuff to bid on.

Check it out at

kamiskancerauction.blogspot.com

SHE'S HOME!!!!!

Kami came home Saturday night! We love it when she is home. She was in for a week and received her 3rd chemo treatment last Wednesday. She came home 3 days later!

KAMDYN!

You are AMAZING!

This is the latest, from her father:


Well, good news and not good news. The good news is that we just saw the tumor and it has shrunk. It is about 20% smaller than it was when this whole thing started. The not good thing is that the tumor is directly over the central part of her liver. Unless it shrinks away from critical parts of the liver, she may need to have a liver transplant. So for now, we're "on the radar" with the transplant committee out of Pittsburg. After the holidays her progress will be reviewed again and the pediatric surgeons will discuss the possibility of removing the tumor. If they feel like they can not remove the tumor without damaging her liver, we will be referred to specialists in Pittsburg. She's making progress, but we're far from out of the woods. Basically, plan A is the tumor shrinks away from critical parts of the liver and it can be removed here in Hershey. Plan B, the tumor does not shrink away from the critical parts of the liver and she will need to travel to Pittsburg to have it the tumor removed. Plan C, Pittsburg decided that the tumor can not be removed without damaging the liver and Kami will need a transplant. Hence, we are now on the radar for a transplant. The good news is that Pittsburg specializes in tricky tumor removals when organs are at stake. Transplant is the absolute last resort for those guys. At least that is what we're told. Pittsburg also has the technology to actually remove both the tumor and her liver, repair and clean up effected parts of her liver, then place her liver back in her body. Anyway, that's the latest for now.



Currently she had the mediport in her chest removed today because it was infected. Accessing the port posed the possible threat of blood infection. The plan was to install a new clean port but the infection was too wide spread under her skin. As a result she will need to wait until her infection clears up to have a new port installed. A PICC line will be placed in her arm in the morning to allow for her 3rd round of chemo. Most likely she will have the PICC line throughout the duration of the 3rd round of chemo.

Going trick or treating through the hospital.

Kami had to go back to the hospital sooner than expected, on Friday instead of today. She had an infection around her port that needed attention. Today she is slotted to have surgery to place another port in her chest, in a different spot, and then receive round 3 of chemo later tonight.

My mom went to visit her last night and said Kami looked really good.

Some of the things Kami did while my mom was there:

-called mom on her cell 10 minutes before she got to the hospital to say hi and to tell my mom she was in the "hopital"

-asked to go for a walk with ther wagon and walked without the wagon a lot

-played/walked in the hospital's playroom

-played with Shannon and Bristol

My mom said she looked the best she has in a while. Her body is recovering well and adjusting great and her counts are going up as hoped. The surgeon said her tumor has shrunk "signifcantly!"

Today she is looking good. She will get knocked back down with round 3. Here's hoping her body recovers easily.

tomorrow.....

we are headed back to Hershey for a CT. we are hoping for good news. :)

Say hi to Kami!

Kami's has been home for a couple of days, and while her body has a lot to deal with, she is making progress and her counts are up a little bit. She still has her feeding tube and lost a little bit of weight, but has gained 1 pound since she left the hospital! Her body is slowly figuring out how to fight this cancer and it's doing a great job!!!!

After nearly a month in the hospital, she is coming home

TODAY!!!!!

Everyone pray that she stays healthy enough to stay home until her third chemo treatment!

YEAH!

This is how anyone, who knows Kami well, remembers her pre-chemo life, colorful and fun!

Love this face.

Kami is still in the hospital. She is having trouble keeping food in her body, mostly because her body isn't used to having to digest food. Her body will eventually figure things out, until then, she stays where she needs to be, at the awesome pediatric floor of the Hershey Medical Center. She's been there for about a month, which has been hard on her family, but it's a small price to pay for her treatment. And while her family wants her home, she has made a new home for herself and the hospital, making friends with all her nurses and doctors. She's become accustomed to the routine there and continues to make progress.

She goes for walks, inside and outside, plays with her sisters, she decorated her window with Halloween decorations, and watches all the tv she wants! Kami, get the rest you need dear. We love you and will see you soon!

THANK YOU!!!!!!!

Last night's fundraiser was a HUGE success.

Kami has the best friends in the world.

Took this yesterday!

cat scan

Her daddy pust these up for those of us who were curious. All I have to say is wow!!!!!

Hey everyone, I was able to get a copy of the scans showing Kami's tumor. In the picture I highlighted where the tumor is with a yellow (+). It reaches about 2/3 of the way across her belly. Anyway, some of you were asking what it looked like and these are the best pics I have. Our doctor placed the size of it as larger than a grapefruit. The stomach, pancreas, duodenum (whatever that is) and sections of the small and large intestines are pressed against the left side of her belly.

p.s. Just heard from my mom that the docs looked at her tests and the fetal-protein, the proteins causing the tumor, count in her blood is down by about half!!!!! This is great news!!!!! The chemo is working!!!!!

2nd round of chemo

it's the end of the first day of kami's second round of chemo.

she has been smiling and laughing with us today.

Isaac's Dinner

Come to the dinner on the 25th,

Next Monday between 5pm and 9pm

Eat great food for an even better cause.

Isaac's Deli

235 Pauline Drive

York, PA 17402

round 2

Kami did not get to come home over the weekend like we were hoping. She was, however, taken off her morphine and seems to be doing fine without. She has had a feeding tube put in through her nose, but, at least over the weekend, that was all she was hooked up to. AND, she even ate a little bit!

Today starts round two of chemo. Lets all hope and pray her side effects are not are bad as before.

recent videos

This one is after her haircut on the 10th.

This one is a few days later.

So stinkin cute.

Isaac's Dinner...rescheduled

The dinner will be the 25th from 5pm-9pm at the South York location. Yeah!

Isaac's Dinner

The fundraiser has to be postponed. I will post as soon as I get the official date.

Today was a good day.

Kami is feeling alot better today. We painted her toe nails and her finger nails, twice and she played with big sister shannon. Both are a good sign that she is feeling better. We are hoping to be able to take her home in a couple of days before she has to come back for her second round of chemo next week. :)



MOM

Rockin her new do!

Thanks Rudy for the pic I stole from facebook!

I can't stop laughing when I see this pic.

Kami is doing well. She hasn't had a fever for 48 hours, but her blood count is still low. She can't come home until her blood count is higher, but she is doing a little better everyday!

Her hair was coming out all over the place, so they shaved her head. Her bed was getting covered in her own hair. I can imagine Chris and Lindsay were sad and it was probably hard for them. She looks super cute, but somehow seeing her without hair makes her cancer more real. We love you Kam.

Isaac's Fundraiser

The fundraiser might have to be postponed. We have to get a few more things in order and probably won't be ready by the 18th. We'll keep you posted.

Isaac's fundraiser

The Isaac's in south York will be throwing a fundraiser on October, 18th. Come in for dinner and 25% of you total will be donated to Kami's family. Kami, will not be there, she will be beginning her 2nd round of chemo that day, but I'm sure she will feel all of your love and support!!!!!

updates

I visited Kami today. Here's the lastest.

Her jaw pain seems to be gone! Yeah!

She doesn't seem to be in any pain from the mucusitis, the ulcers in her mouth and throat! Yeah!

She is talking a lot more! Yeah!

She is drinking lots! Yeah!

Her immune system is non-existant.

Still not eating.

She has a bacterial infection in her blood, giving her a fever.

She has developed pneumonia.

She has started to lose her hair.

She is coughing a ton and puking up the mucus in her system, which is good.

So far, everything she is going through is par for the course.

She is exhausted, but she is fighting with all she has got!

Kamma, we love you! Get better soon so we can play patty-cake and eat......anything!!!!

a few recent updates

I wrote this Monday, October 4th.

Kami was doing really well last Monday, having received her first round of chemo the Saturday before. Everyone was glad to see her able to go home. She was pretty tired and had very little energy. But Thursday morning Chris took her back to hospital because she was complaining of jaw pain, a side effect of the chemo, and she wasn't really eating or drinking well and talking very little.


She was admitted again to the hospital. She was dehydrated so they pumped her full of fluids, which thinned out her blood so she needed a blood transfusion. Her little body wasn't getting enough oxygen from her blood. She got the transfusion last Friday morning. The doctors and nurses watched her very closely for allergic reactions to the new blood.

The doctors gave her morphine for her jaw pain, which helped a little but wasn't enough. Now she is on dilaudid, an even stronger pain killer than morphine. Her jaw isn't in any pain now, but she has "ulcer-like" sores in her mouth that could possibly be through her entire digestive tract, also a side effect of the treatment. This is why she won't eat or drink. It hurts to swallow.

Funny pic from her first stay at the hospital, playing with Bristol's cups

Just a cute picture.

the beginning

This, of course, is Kamdyn.

She is 2.
And she has cancer.

On Monday, September 20th, 2010 Kami, was diagnosed with a rare type of childhood liver cancer.

You can go here http://en.wikipedia.org/wiki/Hepatoblastoma to read more about this type of cancer.

Her parents, Chris and Lindsay, noticed a bump on her belly a few days before the 20th. Through a series of tests on the 20th, doctors were led to believe she had a heptoblastoma, a grapefruit sized tumor on her liver. Chris and Lindsay took her to Hershey Medical Center in Pennsylvania and she was admitted for further testing. Luckily they found that her tumor hasn't spread to other parts of her body.

Yeah! Also, her prognosis is very good, nearly 100%! The docs think that after 4 rounds of chemo, three weeks apart, the tumor should be shrunk enough to safely operate and remove it. She will need 2 more rounds of chemo to blast anything that may have been missed.

Thursday morning, the 23rd, she underwent surgery to implant a port in her chest, that would be used to administer her chemotherapy and other IV drugs, and to biopsy the tumor on her liver so the doctors could figure out which type of chemotherapy regimen would be the best.

Saturday, the 25th, she started chemo.

Kash for Kami

Thank you Tara for the cute flier!

More info to come.