Welcome to Kailyn's Story -
5.5.09
Hello everyone,
again, i know it has been a long time in between updates, but as the days go on there is less to share, which is good news - right .. no news is good news so they say!
but i do have some GREAT news - since i last wrote, kailyn has been back to the doctor several times for her usual scans and check ups - which have all been good. so, they scheduled her to have her port taken out on 4.24.09 - the surgery went well, and now she is free of the last thing tying her to this nightmare of a year. she had her stitches removed a few days ago and things are looking up!
she will still have to go get scans every couple months in the beginning to make sure that nothing has resurfaced, but no more port, no more chemo or radiation - so that is all great news!
she is finishing up her second year of preschool and getting ready for kindergarten in the fall, time keeps flying by! i will post more pictures soon - both of the girls are growing so much!
thanks again for all your love and prayers - we have such an amazing, healing Savior and it is all praise to Him for saving Kailyn!
God bless everyone ...
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1.6.09
HAPPY NEW YEAR!
We are definitely happy to leave 2008 in the past ... what a crazy year! But, in the end it was filled with the blessing of a healed little girl thanks to all your love and support. Kailyn is still going to the doctor for check ups as scheduled and still has her port in, but all things considered, she is doing much better!
Christmas was a fun time for the family, we had a family get together with a gift exchange, brunch at Grandma & Grandpa's and time with Nana and family. We made cards for the birthday boys and girls on Christmas and sang happy birthday three times .. once for Marco (our dog!) once for Uncle Mike .. and most important for baby Jesus (the whole reason we celebrate to begin with!)
I am adding more photos soon, not sure if I can get them uploaded today (it takes a long time!) but they will be there soon! You will see that Kailyn's hair is growing back and getting a bit darker, she is not as blonde as she was in the beginning, but it is not yet as dark as it was before all this happened, so we will see!
She is loving school and being with her friends. They had a Christmas pageant that she was in, all the girls in her class were Mary and all the boys were Joseph .. too cute! She also sang with the kids choir at a Christmas concert at First United Methodist (the church that is associated with her school - MECE) and she was great! It is always fun to see/hear kids sing!
Kailyn got to meet Savannah over the holidays .. she is the other little girl I told you about in a post long ago that was affected by Wilm's Tumor. She is the granddaughter of Dick Reed, who went to school with my dad and uncle Ric. There are alot of things in their lives that are close - ie - kailyns birthday is 8.27.04 - savannah's is 8.26.03 ... kailyn was diagnosed on 3.3.08 - savannah was diagnosed in February 08 .. kristina and raja were married on 11.15.03 - savannah's parents were married on 11.14.02 ... the list goes on about how they were even close in the end of their treatments - We just found it amazingly odd how these two little girls, whose families know each other both were affected by a disease that only affects around 500 kids per year at the same time ... and I am happy to say that Savannah is doing well ... but keep her in your prayers just like Kailyn that everything continues to go down the healthy road.
Ok, I have to run for now .. more to follow sooner then the last gap in communication .. sorry about that!
Enjoy the new year .. I pray it finds you all well ... keep your prayers coming as always..
xoxo
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10.29.08
Hi again ..
I am not sure why my last post was cut short - I guess it never fully updated and I never went back on to check - so sorry to leave you hanging for so long!
Kailyn is doing well, she is back at school and loving it! She has gone back to the hospital for her check ups and to get her port flushed and things are looking good. She will continue to get her port flushed every 2-3 weeks until it comes out - which could be anywhere from 6 months to a year. They need to make sure that nothing is coming back before removing it.
Kristina and the girls are in Trinidad visiting Raja and his family. Kailyn went when she was about 8 months old, so no one over there has seen Karissa yet, except for his mother who came here to see her. They left last Wed. and will be back tomorrow early morning ... and we are missing them! And I let them know they are missing out on some great weather here and from what I hear they are melting down there from the heat.
The girls are going to dress up as Ariel (kailyn) and a witch (karissa) for Halloween this year .. Kailyn's halloween costume is shown in the picture above, we spray painted her hair red to match ariel's .. she looks so cute! As for Karissa, I was told we may have a last minute costume change to a boxer being that she bumped her head while jumping on the bed and now has a black eye :( but we also have a monkey costume - she could be the monkey from the little kids song - 'no more monkeys jumping on the bed'! I guess it all depends on how cold it is on Friday .. I will post some pictures of what the final outcome is .. you can check pics and all on facebook as well - either on Kristina or my site - Kristina Manning Mooklal or Jennifer Manning Freeland.
I think that is all of an update for now .. keep praying that she stays clear and have a great time trick or treating!! God Bless ..
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9.17.08
Hello everyone ..
Kailyn went back to the doctor the other day for a check up, as her counts were a bit low after her last check up- post chemo
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9.4.08
Goodmorning everyone .. Just wanted to give a quick update on how Kailyn did with her last treatment. First off, she is sooo excited that it is her last treatment! She was beaming when I saw her . . .
But a few hours later when the medicine was taking it's toll she was not looking so hot. She got a faver - 102 and over the course of the night she threw up 15 times .. that is more then she has gotten sick over the last 6 months - and that was with the anti-nausea medicine. Poor thing.
If everything went well with the Chemo, hopefully that will be the last time she goes through that.
Her port will stay in for about 6 - 12 more months to make sure that everything is clear.
Today, I am going to go make a cake with her later to cheer her up a bit .. hopefully it helps!!!
Have a great day.. .. and I know some people were asking me how to help out still - you can check on the Ways to Help page, and as always .. keep praying!!!
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9.3.08 - 5:15 PM update
Kailyn & Kristina are still at the hospital!!! I got through to Kristina at 4:30pm last and they were still waiting on the Chemo to arrive. . . her port was accessed hours ago - a little before 1 PM.
The whole visit is a waiting game, and the time I went with her we were there until 2:30 PM, and that was the latest she had ever been there - but I guess there had to be an experience for her last treatment to make it that much sweeter that she never has to do it again (Lord willing!)
Hopefully they will be on their way home soon!
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9.3.08 - 10 AM update
Today mark's 6 months since we first were told of Kailyn's tumor. She has come a long way since then and today will be the end of another step in her treatment - Chemo. She went to Joe D's around 10:30am today to receive the last dose.
Should everything continue on the same track, she will be required to go back every 3 months for scans and testing to make sure that nothing comes back and everything is as it should be.
I am not sure when her port will be removed or if she still has to go weekly for a finger prick to check her levels - Kristina will find that out today. Hopefully it will just be the every three months!
She has come a long way and is doing really well. Her 4th birthday was on the 27th of August, she started school again - K4 at MECE, and her hair is coming back in .. still blonde! It is so cute and soft ... just like a babies head, maybe even more soft if you can imagine! You will have to feel for yourself if you see her :)
Thanks again for all your love and support, but it is not over just yet .. please KEEP PRAYING!!! God has been healing her tremendously and will continue to do so.
Hugs to everyone! Have a great day ...
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8.19.08 8.11.08
I just uploaded some pictures of the FL Marlins baseball game we were invited to by Caps for Kids. They are a non-profit organization that helps give kids with various illnesses a fun day at a baseball game nationwide. They also get an autographed hat and a VIP tour and to be on the field during batting practice. We had a great time!
Today we went a took a tour of a local fire station where Cathy, Kristina's friend, works. It was alot of fun! Kristina, Grandma, the girls, Kristina's friend, Dierdre& her son, Ethan, and I got to ride in the truck and got a tour .. more pics to come of that!
Have a great day ...
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8.12.08
One more treatment complete .. and only ONE to go! She was at the hospital with mommy from 830am to 2pm and completed her second to last treatment successfully. She has been feeling a bit sick today, it is so sad to watch that. When we were helping her try to throw up, Kristina said, ok, let's go home so we can get some more medicine, to which Kailyn replied "I think I am all better, I didn't really have to throw up, I just had to burp. Yep, it was just a burp, I am all better now!" Poor Kai-Kai doesn't love medicine .. so we got her some marshmallows to eat after the medicine to wash out the taste. She likes to eat either marshmallows or 'black cookies' aka - Oreos.
Tomorrow night we are going to a Marlins baseball game - the Caps for Kids program invited her and the family. Hopefully she is feeling up to it and we are not rained out .. in the 5th inning all the kids get to go down and see the players, that should be alot of fun for her.
Ok, gotta go watch some of the Olympics .. have a great night!
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Goodafternoon ..
Tomorrow is another Chemo day, but it is the second to last treatment for Kailyn! She had an ultrasound and chest x-ray done this past Friday to make sure everything is still clean and nothing has spread. Those results should be in tomorrow, I think.
We were all invited to attend a Caps for Kids Marlins baseball game on Wednesday night .. so we are hoping Kailyn is feeling up for that after her treatment.
We had a big family get together yesterday when some cousins came to visit. They all got to meet Kailyn & Karissa for the first time, so that was fun :)
Kailyn is so excited to be starting school again soon, and has been getting her tinkerbell backpack and dora lunch box all ready for a few weeks now! She cant wait to see all her friends again soon.
August 27th is her 4th birthday, so we have also been planning her birthday party - the excitement is almost too much! She is getting so big, and way too cute!
Her hair continues to grow .. and still blonde! It is the cutest thing ever, I am going to miss the peach fuzz head of hers.
Ok, that is all for now .. be praying that tomorrow goes well and she doesn't get too sick from the Chemo.
Sorry I havent added more pics, it is not the easiest site to update as it takes so long to get the photos in, so if you want to see more recent pics, go to facebook and search for Kailyn's Story on either my (Jen 'Manning" Freeland) or my sister's (Kristina Mooklal) profile/photo albums.
Have a blessed day everyone ...
xoxo
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8.6.08
Hi Everyone ..
Sorry about the long gap in communication - I have been a busy lady. Enough about me, on to Kailyn!
Kailyn completed another Chemo treatment on Tuesday 7/22 and as usual felt horrible for the days following. Her body does not like the treatments very much as you can imagine, but we are praying that they are working as this whole ordeal nears it's end.
She has two weeks off in between treatments still and Lord willing she should only need TWO more!!!! She completes another treatment this coming Tuesday, so the countdown has been on!
She will have another ultrasound soon to make sure that nothing is still growing or spreading, so please keep that in mind and prayer as it is the most important test to show that we are beating this cancer.
Her spirits bounce right back to normal once she is out of the 2-3 day zone following treatments and you would never know she was even going through all of this if it weren't for the hair loss.
Speaking of hair loss, her hair has been growing back for the past month and it is so cute! My dad calls her fuzzy wuzzy and has been reciting the fuzzy wuzzy was a bear poem to her. She is so cute with her little peach fuzz - but I went away for a week and it has doubled in length and is no longer mere peach fuzz. So far it has been coming in very light, so we may no longer have a brown haired little girl, wouldn't that be wild! She may be a blonde like her mommy :) You never know what will happen when it regrows is what they say - sometimes changes colors, texture, sometimes comes back in curly/straighter then it was ... so we will see!
Ok, that is all for now folks - I am uploading pics soon, and on facebook as well .. I have added a page for her called Kailyn's Story that you can click on for more information as well for those of you who are online socialites :)
Have a great week...
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7.5.08
Goodmorning ..
Happy 4th to everyone. We had a great time last night watching the fireworks with our family .. check out the pictures. Watching Kailyn & Karissa's reaction to the fireworks was more fun then watching the fireworks ourselves!
Kailyn got sick a few more times this week, but is doing much better by now, so long as she has her anti-nausea medicine.
We are getting ready to leave for the keys today for a week. The kids are really excited to spend time down there and practice their swimming. They have been taking lessons and are doing well with that.
Thank you to those who have given of yourselves recently to make this whole process easier on Kailyn & her family. We all really appreciate your love and support.
Have a great week ... will share more pics when we return!
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7.1.08
Goodevening ..
Today Kailyn had another Chemo treatment. Everything went ok - Kristina was there with Kailyn alone today and she did really well, she cried a little when they accessed her port, but was not as hesitant as last time (when we needed to restrain her as usual). So that was a positive. She fell asleep right away after it was over with.
So, when we got home, Mommy was going to make Chicken Cutlets for dinner and I was going to make a coconut cream pie with Kailyn - sounds easy, right!? Kristina went to Publix to get a few things and left Kailyn home to play with Karissa with Grandma. Kailyn had wanted to go with Kristina and was upset that she left without her, so Grandma was going to drive her up to Publix, but I was coming around the corner, so I drove them up in my mom's car.
Just as I was coming around 12th Ave about to turn onto Palmetto, the car in front of me decided to stop half way into the intersection as the light had just turned yellow, and I bummed the back of him :( Not a good day! The kids are ok, but were a little scared. We pulled off the road and Kailyn started to throw up just as Kristina was coming to get them. What an ordeal. Then, as if that were not enough, we went to drive home and mom's car was not working properly, so it had to be towed. As the tow truck guy was releasing the van, he released it too quickly and it took off the front bumper ... could anything else happen today!
Enough about that .. back to Kailyn's progress! This past Friday we went to 'noogieland' - which is a program for kids going through cancer and other illnesses. It is put on through a non-profit group that was set up in honor of Gilda Radner called Gilda's Club (www.Gildasclub.org). It is for the whole family - so while Kailyn was playing with other kids her age, Kristina, my mom and I were in another room with the parents talking.
She met another little girl named Kaitlyn who is a few months younger then Kailyn. She has a tumor on her bile duct (near her liver). There are only 5 cases in the US per year - she was diagnosed at age 2 when they found a jelly bean sized tumor near her bile duct, they removed it, reformed the duct with part of her intestine, and she underwent Chemo and more therapy to make her well.
In February she had scans and everything was clear, so in March they removed her port and her hair had already come back in - curlier then before! Her mom was due with her little sister any day when Kaitlyn got sick again in May. They returned to the doctor to find that a tumor the size of a lemon had grown back since the scans in February. She is now back on Chemo and loosing her hair again and her parents say that she is taking it much harder this time.
When they pulled up to Gilda's House she was hesitant to come in, until she saw Kailyn. She whispered to her mom, look - she has no hair either! The two hit it off and she felt more comfortable coming in to play once she knew she was not alone.
It is a great program, for the kids and adults .. please be in prayer for Kaitlyn, her family and the other families in our area going through illnesses with their young children. It is a long tough road for some of these families (ours included) and as we come to the end of Kailyn's treatments we are just continuing to thank God for His healing hand and the love of our friends and family for helping support us through all this. But it is not over yet .. so keep those prayers coming!
God Bless
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6.24.08
Hi everyone. . .
We went to Tampa this weekend, and the rain followed us! The kids were so bummed because they couldn't go in the pool as we had told them they could on the 5 hour trip over. They did however get to play in the tubbie instead - and we got about 15 min of pool / hot tub time when the rain let up!
When we went for Kailyn's check up last Tuesday her blood platelet counts were very low - average is 150 and hers were at 21 ( and 15 is when you need a blood transfusion. ) So she went again on Thursday and they were up to 73 - which was a good sign. Monday, June 23, she was scheduled to have an echocaridogram to make sure that everything was ok and her levels were up to 293 and the test came back A-OK!
So, that is the good news for this week - keep the prayers coming ...
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6.13.08
Goodmorning,
Last night we attended the 5th annual 'Grandpa" Daddy Daughter Date Night (GDDDN) and had a blast! Kailyn has been attending since the very beginning back in 2004 (in her mom's belly!) It was held this year at Sol Kitchen in downtown Delray and we had the whole place to ourselves being that it has grown to over 50 people! The food was great and there was alot of dancing - pictures to be added on that soon :)
So, needless to say Kailyn was feeling well last night. The Chemo has taken it's toll on her this week, she has been extra tired, sleeping through the night, taking naps and sleeping in extra late. Now if Karissa would only do the same, mommy would have a nice night of sleep as well!
Merry Maids, a local cleaning company (http://www.merry-maids.com/) has so generously offered to come by and help Kristina out with some of the household cleaning to give her a break. I thought this was so nice of the owners who don't even know us - so please, check them out and help support those who are being so generous. Also, keep checking out the past supporters of the events we have held - their info can be viewed on the events page. Some of them are even offering to donate a percentage of sales to Kailyn's family if bought through the link on our site!
So, keep your prayers coming - and have a great day!
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6.11.08
Goodmorning everyone,
Kailyn's two week break from Chemo ended yesterday. I went along with Kristina for the treatment and got to witness just how sad it is.
We arrived a little after 930am - we were an hour late due to Kailyn sleeping in so late, and being that they usually sit around and wait for an hour, Kristina decided it was best to let her sleep in. We got there and played in the play room for over an hour before they accessed her port. Nurse Nerva was helping out this morning and was very nice, but that was not helping Kailyn -she gets so anxious at the thought of the procedure, even though at that point she had the numbing cream on her port for almost 2 hours and wouldn't feel a thing - it is more the psychological trauma of it.
Kristina and I had to hold her down - the look on her face when she saw me going to hold her legs down just about killed me - her eyes got really big with tears streaming down with a look that said "Oh no, not you too!" It was so sad to watch her so frightened.
Once the needle went in and the port was accessed and taped down, she was somewhat better and now ready to help administer the saline solution - like it never happened! Then the reward came : Cheetos!!! And now our little Kai-Kai was quickly turning into a Cheeto with her hands, face and clothes covered in orange crumbs!
We went and played more in the playroom, play-do, movies, dinosaurs and train sets. She met some other kids that were there for various reasons - eight kids in total were there and they were down in staff, so we waited. Lunch came and Lotsy Dotsy (the volunteer clown) delivered Kailyn some spaghetti & meatballs.
The Chemo finally arrived after 2pm and now we are in for the second wave of fear for Kailyn - even though her port was already accessed, she is crying and not a happy camper because she doesn't want her medicine or for nurse Alice to touch her. But, after a few tears and thoughts of her reward (black cookies to Kailyn - Oreos to the rest of us!) she reluctantly gave in. This time was not as bad, even though it was just as sad to watch her cry.
Now all we had to do was sign some papers and we were out of there around 3pm - and Kailyn was so wiped out she fell asleep on mommy before we got to the car. She slept for almost 2 hours when she got home and then was back to playing - we thought for a short time maybe she would be ok, but later that night the side effects kicked in and she was in for a long night. She has gotten sick from the Chemo at least 6 times by now (10:15am) - poor baby ...
Keep your prayers coming for Kailyn that she is feeling well again soon -- only 4 more treatments to go!!!!
I have to run for now .. have a great day.
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Just a quick update for today : June 3, 2008.
Kailyn goes in today to get an ultrasound of her belly as well as chest Xrays to make sure that nothing has spread. Her levels had been so good that she has moved up to getting 2 weeks off Chemo. On her days off she still has to make a trip in to get a finger prick - which to her is almost as bad- but at least the whole day is not consumed in the hospital.
Kailyn got to go to school two days - one of them being the last day of school and she loved it! It was so great to see her laughing and playing with her friends - she truly misses that interaction so much. She also went to Church this past Sunday and got to see some more friends ... check out the About Kailyn page for more pictures.
Hope you all are having a great day!
***UPDATE***
The Event for 6/21/08 has been postponed ...
and the location is being changed being that the Colony Hotel has no A/C!
I will keep you posted on the new date soon .. we are thinking about late July/August.
Call Jennifer 'Aunt Jeni' @ 561-756-6417 for more details ... or if you would like information on being one of the local vendors present.