June 20,2000
Kassidy Paige Pendleton
was born at 8:00pm weighing 7lbs.1oz. A
healthy baby girl, or so we thought!
Little
did we know eight months down the road our little Kassidy would be a very sick
little girl.
Click on the pictures to see video clips of Kassidy in action...To cute for words.
 |
 |
|
|
|
January 11, 2001
We had noticed what we
thought was bruising on Kassidy's back. Took her right to emergency thinking that
she had somehow fallen, so we wanted to get her checked out.
We had also noticed a bump on her lower back. the same place the
"bruising" was. Dr. Hahn
checked her out and ordered blood work and an x-ray.
We found out a few days
later that the bruising was Mongolian spots. very common in babies and that will
go away with age. But the doctor
was concerned about the bump on her back. So,
Dr. Hahn wanted an MRI done.
February 23, 2001
Went down to Sick Kids
hospital for the MRI. The doctors there didn't want to do it because of her
pectus chest and the way she was breathing.
It seemed like she had a bad cold, runny nose and hard to breathe.
But one doctor finally
did it, but could not sedate her because if anything happened during the MRI
(stopped breathing) they wouldn't be able to incubate her. Well, the doctor said
later that she did have a hard time breathing, a mucous plug had stopped her
from bringing in air. The test was finally finished and now time to go home to
wait for the results.
March 9, 2001
We had an appointment
to go see a neurologist Dr.Cooper. She examined Kassidy and we told her
everything that she had been through and which doctors had checked her out. We
told her she had an MRI done but have not had the results back yet. She phoned
Sick Kids and within ten minutes had them in her hands.
The "bump" on her back was called Gibbus Deformity.
Dr.Cooper wanted Kassie
to see a genetic doctor.
March 27,2001
We walked into Dr.
Oman-Ganes office, had a little chat and then checked Kassie all over. One look
at her and the doctor said "I am sure I have a diagnosis MPS-mucopolysaccharidoses".
What the heck is that??? She explained to us that it is a storage disease. That her liver,
spleen and heart were enlarged because of the buildup
of sugars in her body that couldn't be digested.
Dr. Oman-Ganes ordered
more x-rays and blood work. She wanted to find out exactly which form of MPS
Kassie had.
March 28,2001
Dr. Oman-Ganes phoned
me back the next day (it was suppose to take a week). She said it was confirmed
that it was MPS-Hurlers Syndrome. Now we had read up on this quite a bit-that
was the most severe type of MPS that a child could get and our baby had it!
Our next appointment to see the genetics doctor is Thursday April 5th..to
talk about what to do next....talk about enzyme therapy maybe...but most
definitely a bone marrow transplant-which only helps to slow down the process,
but not to cure the disease. We will see what she has to say about Kassie and
go from there.
April 3,2001
April 16,2001
Sorry about the delay
from the last entry, but Kassidy has been doing pretty good and not really too much
to report on.
She had an appointment
with the Professor of Pediatrics-Dr. J.Clarke, to assess Kassidy, along with his
assistant -resident Dr. Jimenez. They weighed her, checked her height and her
head circumference. Seems to me the last time she was weighed till now, she has
lost almost one pound and her head has grown an inch (in two weeks).
Kassidy has clouding in
her corneal (eyes) and possibly some hearing loss. They will be making her
appointment to get that all checked out with the specialists shortly.
Both Kassidy and I had
our blood drawn today to check for HLA typing (Human Leukocyte Antigen), which
is needed to provide the doctor with information needed to search for a donor
with a matching HLA type. In order
for the bone marrow transplant to happen, the donor and Kassidy must have
identical HLA type. We are pretty sure that the match will have to be unrelated.
Therefore-the search will be conducted through The Canadian Blood
Services Unrelated Bone Marrow Donor Registry.
Next thing to do now is
a CT scan of Kassidys head to see if there is any fluid on her brain.
If there is, a shunt to relieve the pressure will be put in.
April 24, 2001
Kassidy went for her
appointment with Dr. Papsin, the ear, nose, and throat doctor today, or better
known as the ultimate Maple Leafs fan, all decked out in his fancy colourful GO
LEAFS GO shirt!!!! Dr. Papsin checked out her ears, then had a hearing test
done, and indicated to us that she has fluid in both ears. We knew it was
coming, but he said that Kassie will have to have tubes put into her ears, and
he wants them in before the bone marrow transplant-whenever that will be. So,
May 1st at 8:30 am she will have the surgery.
This should take care of her ear infections and clear up any fluid in
there...and then hopefully she will be able to hear us all!! Maybe this will
help her to start talking, but we're not too sure about that. She already
babbles and when she sees Kermit the Frog you should see her trying to strike up
an intelligent conservation!!
Dr. Clarke, the
geneticist called today and said the CT scan for her head....checking for fluid
is to be done next Wednesday ..May 2nd at 7AM!!! Things are starting to move
now!!!!
If they do find fluid,
they will most likely be putting a shunt in her head to relieve the pressure.
May 1st, 2001
Kassidy went to have her tubes
put in her ears today at Sick Kids. Hopefully this will relieve the fluid in her
ears and she will be able to hear us all. Dr. Papsin said it went well, but he
couldn't do the hearing test-where they
do some kind of test where they attach tubes to the nerves in the
brain and scan for waves in her brain (that's the way that I understood how the
doctor was going to test her hearing). The machine was not working
properly, so we will have to re-schedule her appointment for that test.
May 2nd, 2001
Today was the day Kassidy went
for her CT Scan. This was to see how much fluid was in her head and possibly get
a shunt put in her head to relieve the fluid and pressure in her brain.
Dr. Clarke will phone us with the results and hopefully it
will come back with positive results. Her next trip to the hospital will be to
get her eyes checked. Kassie has some clouding in her eyes and they would like
to know how much she can really see. Not sure how they do that with a 10 month
old, but we'll find that out May 9th.
May 25,2001
Kassie went to see the
neurologist to find out the results of her CT Scan. The fluid in her head has
not increased, therefore no shunt will have to be put in!!!
June 6,2001
Today's trip to the
hospital was for her eyes again. This time the
drops worked and Kassie has a little bit of clouding in her eyes, but the
doctor said she could probably see fine. He said if and when she has the bone
marrow done, he will check her again then.
Now we are just waiting
for word on her transplant. I received a letter today detailing what to expect
during the process of finding a perfect match.
If one is found, it will take between 3-4 months for the tests to be
complete and then another 1-2 months for everything to be put together for the
transplant day. Waiting patiently
for that day to come!!!
June 20, 2001
HAPPY BIRTHDAY KASSIDY!!!!!!!!
Today was spent with family and very close
friends.
Kassie opened her presents with some help from everyone...then
proceeded to do a
faceplant in her Kermit cake that Grandma made.
This birthday was a
special day for us all...every child is precious and should be
June 26, 2001
We received great news
today!!!! Sick Kids phoned and told us they have found
a match for Kassie's
bone marrow!! The tentative date is set for late August early
September if all goes
well with the donor dates and other stuff that need to be done.
It's all becoming a
reality now, a little scary but nonetheless Kassie has no idea. Just
keeps playing with her
new toys like nothing is going on. hehe.
We'll keep everyone
updated as we know more. The next trip to the hospital will
July 2001
They found another donor-a
perfect match! This one is an 8 for 8 antigen.
Now, we just have to wait for that donors tests to come back and
hopefully the BMT will take place the end of August.
That's still the date the doctors are aiming for.
August
2001
Kassie had her ECG-echocardiogram
done today. Dr. Russell said that
everything looks normal-heart and veins look good.
Another step in the right direction.
She also got her teeth and gums checked out...just to make sure the teeth
were growing in well and that there was no bleeding or gum disease present.
September 2001
Well.....the transplant date
has been confirmed-Kassie goes in for the BIG DAY on October 4th!!
But, she will be in two weeks prior to that for all the chemotherapy and
radiation treatment first. A bit
scary for everyone involved...but we are all prepared for it.
We would like to thank The Phillips family for taking wonderful care of
our older two--Kylie and Jamie during the times we couldn't take them with us,
thanks a million-we owe you!! The
family has had a wonderful summer with close friends camping, boating, skiing,
fishing, looking at the stars, and just relaxing by the lake.
To the Eden family...Skip, Sherry, Angelia and Kyxx---- we want to thank
you all very much for taking part of the stress away- if even for a little
while. Kassie I know for sure had an
amazing time in the boat!!
September
2001
Kassidy
was admitted to the Hospital for Sick Kids on the 19th.
The nurses did all their necessary poking and prodding to get her ready
for transplant day. They put in her
CVL-central venous line and gave her drugs-to get rid of all her bone marrow to
prepare her for the transplant of the donors bone marrow. What an exciting
thing, but also scary because of the risks involved.
One thing that we didn't know, and I'm sure a lot of other people don't
realize is....Kassie's blood type is A+ and the donors is O+ - once the bone
marrow is in, Kassie's blood type
will eventually go to O+ !!! Also her DNA will be the exact same as the
donors!!!
September 16, 2001
Kassidy has another big day! Today is her Christening Day!!! Our good friend Marlene bought Kassidy a beautiful 'angel' dress-off white with gold trim!! We had thought about who was going to be her godparents and quickly decided that it would Skip and Sherry Eden. They (along with our own families) have been with us every step of the way, and we know they love Kassie, not just because of her disease, but because she is a child with a big heart and besides, who couldn't love her!!!!
The ceremony was held at Trinity United Church in Bowmanville--a beautiful church, and it felt just right to have it there. Everyone in that church welcomed us with open arms, and a big smile!
The pictures tell the whole story---it was just a great day all in all.
TRANSPLANT
DAY -
Just
as the nurses had said-it was very uneventful...but exciting because Kassidy now
has a fighting chance of having a better life-no matter how short or long it may
be. The bone marrow looked like a
bag of blood going into her CVL-and she slept through it all!! Guess she didn't
think it was very exciting!
Kassie
has had spells of high blood pressure, which they gave her medications for
(along with all the other meds given to
her ). She has had a couple high
temperature days-which they expect to see anyways.
Kassie has lost most of her hair-caused from the radiation and
chemotherapy...but as you can tell from the pictures, she is still cute as a
button and her usual playful happy-go-lucky self!!
As
for her stats---Kassie's white blood count was 0.8 the day of transplant but has
gone down to 0.1 by Day +4. That is
quite normal and should expect to go up possibly by next week (week of the
15th). In order for Kassie to get
out of isolation, her WBC has to be 0.5, which shows that the engrafting of the
bone marrow is starting to take!!
On
the 10th and 12th of October, Kassidy has needed to get platelet transfusions
because hers had dropped down to 12. They
do the transfusions if they drop below 20. Kassie is just going with the flow of
things and doesn't seem to be bothered by most things-she even gives the nurses
her arm when they need to do her blood pressure-it is so cute!!
The
first person we need to thank is THE DONOR!! It's a hard thing to do for someone
you don't even know and it is greatly appreciated!! Hopefully we will be able to
write or meet in person in two years and really be able to say thank you for
giving Kassie another chance at life!! Thank you again!!
To
everyone else..Phillips, Pendleton, Correia,
To the nurses and doctors and volunteers who make Kassidy's stay at the hospital very pleasant...thank you very much...it makes the whole stay less stressful when you have people coming in with a smile on their faces and willing to help out and answer any questions we have. Thank you!!!
November 2001
Kassidy got out of the isolation room and into the step down room as soon as her white blood counts got to 0.5 and started having some poly counts. What a great day that was-to finally be able to hear other people around you. Those isolation rooms are also soundproof I think! Sorry about not knowing the exact dates on some of these things, but my mind wasn't exactly thinking while Kassie was ill.
But, once her counts started climbing, they kept on climbing! She has started to eat and drink a little bit again. That's always a nice thing to see! Kassie has had little setbacks, but all relatively common ones. Throwing up every time she needed to take her oral medications or smelling the food-especially first thing in the morning! YUCK!
Her blood pressure has been going up and down-more up than down. So, more medications to give her to keep that down. But, all in all, Kassie is doing fairly well and they have been talking about sending us home as soon as her counts go up more and she starts eating.
The throwing up hasn't stopped and she has a bit of a rash on her hands, feet and stomach. They nurses took some blood and stool samples and off to the lab it went. The results came back a few days later-it was Graft vs. Host disease. We had read about this, and it occurs in just about every bone marrow recipient who gets an unrelated donors marrow. Makes sense to me. The body is trying to reject something foreign coming into it. Kassie was given a drug for that and a few days later the rash was starting to fade.
November 21, 2001 GOING HOME!!!
WOW!! We thought this day was never going to come! Kassie has been eating and drinking well and has not thrown up for a couple of weeks! Her counts are great and it's time to go home and try to live a normal life!!!!!
We need to thank a lot of people for taking such good care of Kassie while she was in the hospital----Drs Doyle, Freedman, Saunders, Papsin, Tiassi (sorry if we forgot some). The nurses---Kim (xoxo), Natalie (xox), Cindy, Jen L., Jenn A., Siobhan, Sharone, Dionne, Glen, Cherie, plus all you other great nurses who cared so deeply, and also Bronwen (a student nurse who always had a smile on her face).
A big thank you to the PSA's-for all your kind words, all the help you gave us, and especially the meaningful talks we had to a few of you (thanks).
To the volunteers-THANK YOU for letting us be able to keep our sanity by getting outside everyday for a few minutes. Without you people, life would have been hectic. Thank you again!
To our dear friends at the Ronald McDonald House--Kathleen, Fern, and Alex (xoxo), Stephanie B., Andrea, Stephanie and Dan, Joe, Thank you for listening and sharing your thoughts with us. It sure made life easier knowing we were not alone being without our families. Thanks for the smiles, tons of laughter (cackling), and a few tears. We'll definitely keep in touch with you all.
Last, but definitely not least--a BIG THANK YOU to our families and closest friends--thanks for being there when we needed you the most, for taking care of our other two kids-Kylie and Jamie, and for the visits in the hospital to see us and Kassie. It made it easier to cope seeing familiar faces once in a while. XOXOXO
December 2001
Kassidy has to go back to Sick Kids every Wednesday for blood work and checkups. So far it has been all positive!! She seems to be doing very well-the drugs are doing a number no her eating habits and the hairy look doesn't do anything nice for her usual sweet looks. But, that will go away in due time.
The doctor has recently told us that Kassie's bone marrow is 65% donor and 35% her own. They took another sample to see if it has gone up or down from the first test. A 100% donor would be great! If it has gone down, then we will decide what the next plan of action will be, if we decide anything at all.
Kassie also has an appointment at the hospital on December 17th for a CT Scan of her head. The nephrologists says that her head has grown in too short of a time and they just want to make sure everything there is going okay.
We're also going to be spending Christmas at the Ronald McDonald House. Our families have pets, and there is usually a big crowd, which is not a good environment for Kassie having no immune system yet.
We are sorry it has been a long time since last update but things have been a bit crazy around here and Kassie is going on her tenth week in hospital since her marrow rejection , so we will try and fill you in.
Kassie was experiencing a lot of problems with GVHD (graft versus host disease) of the skin and what we thought was a cold so to be more safe than sorry we took her to emergency at HSC in Toronto. She was admitted that day and tested positive for RSV (respiratory syncytial virus)
Rsv in her case was a form of pneumonia. Kassie slept for almost two weeks, had x-ray after x-ray and another tour in an isolation chamber.
In mid April the treatments seemed like they were working because Kassie was in good spirits again. She had a series of ultrasounds of a new lump on her back but nothing seen there and was most likely a cyst of some sort.
Soon after Kassie started to not fell well again and was very agitated and was not eating much at all. The doctors decided to put her on MMF (mycophenoiate mofetil) which is like cyclosporin and things weren’t quite right so they put Kassie on Pentamidine instead of Septra.
Late April she had x-ray, scope and biopsy done of her gut which came as positive for GVHD of passageway and gut. Not to long after she had Staph-aureus infection in CVL(centeral line) and was giving cloxacillin.
Doctors decided late April to have Kassie fitted for a G-tube and then rested for the day, she had Edema and then swelling of skin went down, skin is looking much better.
Just when things were looking good, well you know what happens then . Kassie started getting very sleepy and a lot of pain and very congested and also coughing.
Began to get low temps at 34 degrees and started a series of antibiotics such as Respigam for the prevention of RSV
Her feeds on G-tube were started at 20ml/hr over 20 hrs which went well. Also skin started to act up and started flaking again.
In early May Kassie was taken off MMF because it was not working and started on Daclizumab & FK506 for another hope to stop GVHD. She was very miserable and sleeps most of day , possibly a reaction to the new drugs. And if that’s not enough Kassies molars started breaking through. Kassies CVL broke for a third time and was mended without a problem.
She was giving a series of Ct scans of chest, Echo of her heart and seems to A ok!!!! But lungs show extra thick lining of tissue. Her temps went down to 31degress, cause was unknown but her PH level was down below normal and sodium level was too high, she was very lethargic and lazy eyed. She then had another head CT scan for precautionary measure which went well, nurses put a heating lamp to bring temps back to normal, which again seemed to work because temp went to 35.5-normal!! And seems to be more alert but is still sleepy.
We would like to thank All doctors and Nurses on 8B at sick kids who are doing a great job with Kassie and our family xoxo
May 29th-August 31st
Kassie went down and had a BAL done - what they call a lung wash and then take cultures from it. She also had to have her central line taken out and a new one put back in, as she had an infection in her line. We tried her on antibiotics to get rid of the bug in her line, but that didn't go so well. But, all in all Kassie is doing quite well, now that the oxygen is in place.
The doctors found a viral infection in Kassie's lungs, called EBV - Ebstein Barr Virus, which is making her breathe harder and needing constant oxygen. So, today wasn't a good day, but she is resting as much as she wants to.
On June 9th Kassie wasn't her same usual playful, happy self. She was co-responsive, with her eyes rolling in the back of her head and we had a hard time waking her. That day she slept most of the day and night.
June 10th - Feeling a bit better today, but still groggy. They did a GFR done - a renal function test where they put dye into her kidneys. They said it could be septic shock.
June 13th - Sleeping soundly in our bed, we got a call at 5am to come to the hospital. Kassie was not breathing too well, and she was cyatonic. The doctors told us Kassie would have to go down to ICU. So, she was put on full ventilation - it would be easier to breathe with the help of a machine. Her oxygen level was at 80%, plus put on morphine and ativan.
Blood work was taken and showed that Kassie had candida in her line, with the possibility in her lungs and esophagus.
June 19th - Kassie was extubated today, as everything was going very well with her stats and bloodwork.
JUNE 20TH - Kassie went back up to 8B!! What a great birthday present that was. HAPPY BIRTHDAY DOLLY!!!!!!!! We all love you!!!!!
June24th - Kassie got acidosis again- that is where her pH level is down and her bicarbs are up. So, as a precautionary measure, we took her back down to ICU. We were only there for a day, as all the bloodwork came back stating that the acidosis had cleared up.
July - Kassie has had too many chest xrays and scans to mention, as her breathing hasn't really improved and is really moody. Her feeds are going quite well, but it's the blood pressure problem that is causing her irritability. Poor baby girl.
Kassie had an ultrasound done of her liver because we noticed her eyes were turning yellow. Also, they doctors wants to do a lung biopsy because of a possible fungal infection.
Kassie went to the operating room at 4pm, July 29th to have all of that done.
They had to put a chest tube in after the biopsy to drain the blood, but she was back up on 8B (her home) by midnight.
July 31st - AGAIN, went down to ICU and had to be put on 100% oxygen. Kassie was getting really tired of trying to open the left lung, which has a small collapse. She went back up to 8B the next afternoon.
It is confirmed that Kassidy has GVHD of the gut and lungs and skin. She is on constant oxygen, which helps a great deal.
August 17th- We got to take Kassidy home for 5 days, before having to bring her back to the hospital. We took her up to her favourite place in the world - up to the trailer to see her godparents. Kassie was in alot of pain, due to one of the medications she was on, which in turn caused her blood pressure to rise, giving her headaches.
She had scans, xrays, ultrasounds taken the next day.
August 30th - Kassie went down to have a CT scan done of her chest and head to determine why she was in so much pain. She also had to have a new CVL put in, as the last one put in (this new one would make it her 4th CVL), was in the wrong place and not giving her enough nutrients for her to survive.
The test came back that Kassie had fluid around her heart and lungs, and also blood clots in or around her brain causing the pressure buildup, which likely caused the high blood pressure.
We had the big meeting to discuss what we wanted to do, as there was not much they could do for her.
We decided that we wanted to let her go. Let her go to sleep. We had a wonderful doctor from ICU - Sonny who took such amazing care of her, making sure Kassie was comfortable.
Peter, another doctor from there, talked to our other two kids and explained everything that was going to happen to their little sister.
SEPTEMBER 1st, 2002
ICU doctors and nurses prepared Kassie to make sure she wasn't feeling any pain, and kept her asleep. Slowly her oxygen was starting to deplete and we knew it was only a matter of time. We had friends come in and say their goodbyes and just to be there for us. Mom laid beside Kassie holding one hand, and Dad next to her holding the other one. We took Kassidy's hand and clasped them together like she did every night when she went to bed, looking like she was praying (so angelic), she knew and we knew it was time. Ever so smoothly, her levels went down. With the music playing "You Are So Beautiful", Kassidy drifted off and took her last breathe, with Mommy and Daddy with her, like we have always been. At 3:22am on September 1st, 2002 Kassidy Paige Phillips-Pendleton was declared an ANGEL, with the brightest golden wings anyone has ever had.
We would like to take this opportunity to thank each and every one of you who had a place in your heart for Kassidy, and for those who had a place in Kassie’s heart for you. It made her life a lot happier knowing that so, so many of you cared and loved her deeply. Just remember how happy she was, with that laughter that came right from the bottom of her belly, and the brightest smile ever – that would certainly pick up your spirits whenever you were down.
Thanks to our families for all their love and support, the doctors and nurses, the whole staff of 8B and ICU, our friends from Ronald McDonald House, the people who took care of our other two kids- Kylie and Jamie, Marnie’s Lounge, our friends and neighbours from our Co-op, and Kassie’s godparents. We love you all and I know Kassidy is sending BIG ANGEL KISSES. XOXOXOXOXOXOXOXO
Mommy & Daddy please don't be sad,
I miss you so much too.
It's beautiful here,
but I worry a lot about you.
I sleep with angels watching me,
there is only love up here.
I am never lonely or afraid
because God is so very near.
I walk with Jesus every day,
He is very kind and loving.
Don't worry Mom & Dad, He holds my hand
when we cross a golden street.
I never cry or hurt myself
I see my friends every day.
I play and laugh and sing a lot
and I hear you when you pray.
Please Mommy & Daddy, don't be mad at God,
you see He loves me too.
And even though you are not with me,
I am really still with you.
Author Unknown
Page Design & Copyright 2001
4WebFun Co.
Email
Webmaster@kassiescourage.com
