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June 17th, 2007
Thank you all for caring!
It's been a long time since I've written. As you may know, I've been
battling depression, so at times it's difficult to write about Alysa. My
mother will help write this. Since I last wrote Alysa has been through
two more series of tests and she is doing well. Although her liver is
still full of tumors, there is no new growth. She looks and acts normal.
No one would ever know by looking at her what she has been through. She
had an operation to remove the port from her chest. There is a scar and
once in a while she will pull up her shirt and show you that it's going
away. She also has a scar from one side of her belly to the other which
you can see if she wears a two piece bathing suit (she loves to swim).
Matthew is growing like a weed, he
turned one year old on May 26th. We celebrated with a small party.
Lisa felt guilty about not having a big party like Alysa had, but
Matthew doesn't notice now and Alysa's situation is different. We
celebrate her life, her living, never knowing if there will be a next year.
Halloween was fun. Alysa and
I baked cookies and carved a pumpkin and went to a nearby home for the aged to
trick or treat.
We took the kids to New York in
Nov. to visit relatives and Matthew was Christened.
It had been two years since we had
seen our family and friends so it was a nice visit.
There were still some colored
leaves and we saw a little snow and a caterpillar.
Christmas was special as
always...Christmas trees and Santa Claus and baking cookies and presents.
I took Alysa and Matthew to
"The Relay For Life" Cancer survivors walk..It was very emotional to
walk the track with the people cheering! Last Sunday we attended the
cancer survivors celebration at Banner Desert Hospital and saw some friends
from our hospital days( doctors, nurses, patients)
Alysa is petite, she still fits in
her clothes from last year. She loves to eat but we have to watch what
she eats and limit the amount of milk products and absolutely no peanuts due
to food allergies.
Alysa says her prayers every
night. She knows the "Now I Lay Me" prayer by heart and
blesses everyone.
We'll put a lot of new pictures in
the gallery and try to get back into the swing of web writing.
Alysa will be three years old Aug.
30th...Thank You God!!
June 8th...In Loving Memory of my
Uncle Bill who passed away today. We wish you a good beer, strong
cheese, and clear sailing! Much Love
June 17th Happy
Fathers Day to all the Dads out there and a special thank you to all the
donors without which I would not have my two precious gifts.
I'll try and get the gallery up to
date ASAP....please look and see
Lisa , Alysa Anne & Matthew
September 28th, 2006
Hello All,
As you can imagine things have been very hectic these last few months and this
update is long overdue. Since the last update Alysa had her scans done the end
of July which showed no changes in the tumors in her liver. Her tumor marker
specimen was taken at this time along with specimens for some allergy testing
. Alysa has been having some trouble with what we believe may be food
allergies. She breaks out with a red rash on her face, arms and stomach
and gets irritable. The initial tests showed that she tested positive
for everything. Further testing shows she has an allergy to milk and
milk products,peanuts,pork,beef,corn & etc. We believe this may be a
result of having chemotherapy. The blood and urine specimens for the
tumor marker tests were misplaced and must be taken again.
We have reached another milestone! Alysa celebrated her second birthday
on August 30th. We celebrated with a small children's party. She
was thrilled! She loves playing with other children. We had to
limit the number of kids that she was around while going through
chemo due to the possibility of germs/illness but now she can have more
freedom. She has grown into a very intelligent but typical two year old.
Very independent, fresh, stubborn but a happy, loving, little girl. She
has several baby dolls and toys that must sleep with her every night. We
still play the same classical music cd that she has listened to each night
since she was a baby. Potty training is on the agenda and she goes on
the potty when she wants to. We are now suffering through bottle
withdrawal she had been drinking a bottle a longer time because it
was a comfort while in the hospital and going through the testing. But we are
paying for it now! While visiting her new pediatrician for her two year check
up, he took away her bottle and put it in his pocket and said "no more
bottle" . He said she probably wouldn't miss it... needless to say,
she was crying for it before we left the room. She kisses and sometimes
pokes her new brother, Matthew. He is getting big. He is four months old
today and weighs appx. 15lbs. So far he is healthy, Thank God.Thank you
to everyone who sent birthday wishes, gifts and prayers. We greatly appreciate
hearing from you.
October will be a busy month for us. Alysa will be seeing an allergist
for more testing and hopefully she'll be able to tell us what she can eat. She
has gotten thinner because she is not drinking a bottle and she
cannot drink milk or eat some of her favorite foods anymore, like macaroni and
cheese, etc. On October 9th she'll have another bone scan. On the
18th,19th and 20th she'll have her MIR and MIBG scans then undergo
an operation to remove her chemo port. She should have had the
port in for only 6 months which is the norm but it has been in for a
year and a half. Alysa will be happy to be rid of the port. It hurts her
sometimes and seems to stick further out than it did before. It has been
left in because it is very difficult for the nurses to get a needle in her
veins to take blood or inject the radiation for her tests. We dread
going through these tests again especially since she is older and it's
more traumatic for her. But it will be even harder the next time without
the port. But October should end well, we look forward to the cool fall
weather, playing outside and Halloween.
I apologize again for not giving you current updates. You know how it is
to get wrapped up in your everyday life especially with the joy of a new baby
to tend to and my wonderful, Alysa.
Please see the new pictures in the gallery.
Love,
Lisa , Alysa Anne & Matthew
June 26th, 2006
June 4th was National Cancer Survivors Day. We
celebrated at Desert Banner Medical Center Children's Hospital with Alysa's
doctors and the other surviving children and their families. The children were
given a certificate and a purple heart necklace or bracelet. We saw many of
the nurses that treated Alysa in the hospital and the doctor's office. The
nurses organized and planned this celebration. There was a beautiful cake
decorated with butterflies (butterflies symbolize new life) huge butterfly
cookies, tables with fruit and cheese platters, games and face
painting.
Dr Abella, Dr. Panchoosingh and Dr. Williams are
the Oncologists at Banner Desert Children's Hospital that treated Alysa, it
was nice seeing them all together. It was also nice talking to the other
parents that we have met in the hospital and office especially in
happier surroundings.
(See additional pictures in Photo Gallery)
Love,
Lisa and Alysa Anne
June 5th, 2006
To All of the caring people who follow Alysa's story.
For those of you who don't already know, I have some good news to share with
all of you.
As you know fourteen months ago when Alysa started her cancer
treatments there were several discussions with both our Doctors here in
Phoenix and back in New York about what treatments other than the
chemotherapy and operations that might be necessary in helping
Alysa in the future. At that time we discussed bone marrow
transplant. We discussed the bone marrow donor options which
consisted of only two possibilities. One of which is the use of her own
bone marrow and if that did not work the second possibility being that of a
sibling donor.
After much soul searching and many discussions with my doctors and family I
decided to try to have another child who's stem cells from the
umbilical cord blood might be used to help to save Alysa's life. I could
not have done this without the help of my doctor, his nursing
staff, the pharmacy and Viacord all of whom donated their time and
services. I was advised and I also thought it would be better not to
share this information with the public but to keep it private,
in case there were any complications and the outcome was not favorable.
Now I am extremely happy to tell all of you that Alysa has a
baby brother. He has been named Matthew Wilfred (Matthew from the
bible meaning "a gift from God" and Wilfred after my favorite
great uncle, Wilfred Mitchinson).
As Alysa's treatment continues we hope that in the future Matthew's stem
cells will not be needed, but I feel that we are more prepared for what may
come.
Thank you for all the Love and support that my family and I have felt over
the past fourteen months ( which feels more like three years) we could not
have gotten this far without everyone's prayers and support and hope that
they continue in the future.
Alysa's last scans show no new active cancer, but she still has the tumors
in her liver and there has been activity in both sides of the base of the
skull. She is being scheduled for new scans for July and will be checking
her tumor markers each month.
Alysa is just thrilled with her new baby brother. I thank God everyday for
my many blessings.
Lots of love to all,
Lisa and Alysa Anne
April 14th, 2006
Hello everyone. I hope that this update finds you
all in good health. As you all may already know a year ago on Good Friday 2005
(which actually fell on March 25th) we had the CT scan that told us that Alysa
had Neuroblastoma and the Tuesday after Easter Alysa was admitted into the
hospital for her first surgery. We thank God that this Good Friday finds us in
much better sprits as Alysa is doing much better than I could have imagined a
year ago.
Her tumor marker test came back in the high range
of normal which is good. We went to see her doctor last week about some
concerns and he ordered her scans to be done again which is just
a few weeks early. On Monday April 10 th Alysa had her bone scan done and next
week on Wednesday, Thursday and Friday she will have her repeat MRI and MIBG
scans.
Alysa's prognosis is on a wait and see
basis. Based on monthly and tri monthly testing. Her Doctor says he
has no crystal ball and can't predict her future. But right now she is doing
well.
There are some new pictures in the photo gallery
that were taken within the last few weeks. As you can tell we had a lot of
laughs getting a picture of Alysa. She pulled her hat down, covered her eyes,
picked her dress up and just would not sit still. But as Grandma says
"she's a beauty" and I must agree!
This Easter we will have family over for
dinner, we will have an Easter egg hunt, Alysa looks forward to the
Easter Bunny bringing her a basket full of goodies and we will be remembering
everyone on our Easter prayers and we hope that you will remember us in
your prayers.
Much Love,
Lisa & Alysa Anne
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March 9th, 2006
Hello Everyone,
Well I was waiting to update so that I could give
everyone the results from all of Alysa's tests but we don't have all of the
results yet. She was battling a cold the week before her scans and she still
had a runny nose so when her chest was clear we were able to
continue with the scans. The good news is that her scans are all back and there
has been no change yes, I would like to tell you all that the tumors are
gone or are shrinking but at least there is no growth or changes in the
shape of them also no evidence of any new growth. These tumors which are
present in the liver are still active cancer. The Doctors are still
telling us that the chemo should still be working and we hope to see
shrinkage of these tumors in the next set of scans. As for her tumor marker
tests which are very important, we are having some trouble getting enough of a
urine specimen for one of the tests. I have to bring Alysa back to the
hospital to try again. Ever since we have been trying to get a urine
sample she refuses to go on the potty and she was doing so good. I hate to put
her thru this again but we have tried a few other methods and they have not
worked so back we go. As you can imagine it is very frustrating for me
and worse of course for her.
Alysa has been doing okay otherwise. She
continues to amaze me she is so smart. Her hair is getting thicker but it
does not want to grow in length. I was looking at pictures from her
birthday back in August and I remember telling people how she looked so
healthy and that she didn't even loose her hair. People must have thought that
I was crazy because I look at them now and I see that she was bald. Why didn't
anyone tell me??? I attached some of her most recent pictures. She is
such a doll.
I can't believe that it will be a year since that
CT scan from hell that confirmed my worst fear that something was wrong
with my baby. I should not have even brought it up because it is so hard
even now to believe. Even with how far we have come it is so hard to
think that my baby my precious gift from God has CANCER. This is not
how things should be. I cannot stress enough to the Moms out there that you
must listen to your "Mothers intuition" or that
feeling you get when you just know that you are right about something or that
something is wrong. Don't let it go when you are told not to worry nothing is
wrong. If you still feel it keep at the Doctors until they can prove that
there is nothing wrong. Even when things seem to be explained away. Don't let
it go. If I had I am sure that my Alysa would not be here today and I cannot
think of anything worse than the loss of a child.
I am grateful to everyone who has sent there
love and prayers over this past year. I know that without all of your prayers
and support this horrific journey that my family and I are on could have
been much worse. Please keep us
in your prayers and continue to believe in and pray for miracles.
By the way for anyone interested yes, my Christmas
tree has finally been taken down and put away.
A few family notes: My brother David's oldest son
David Jr. turned eight in January. My brother Kenny's daughter Stephanie
turned twelve in January and his son Anthony turned five in February. Also,
Kenny graduated from Pima Medical Institute in Tucson as a Respiratory
Therapist his graduation ceremony was the day before his forty-first birthday. Congratulations!!!!
Much Love,
Lisa & Alysa Anne
January 19th, 2006
Hello everyone! It's Lisa finally. I has been
quite a while since my mother sent out her update and I wanted to first thank
her for doing so as I was not in a good state at the time and I know that so
many people are following Alysa's progress.
We had a nice Thanksgiving as I have soooo much to
be thankful for. Sometimes your head can get very cloudy with all of that
other stuff and you can lose sight of what is most important. I am very
thankful to everyone who has sent messages of encouragement and prayers as
well, you have all been a great help and I want to make sure that I have said
that. Thanks again.
Now , after the long ordeal with the misdiagnosis
(of hammertoma) of the liver wedge that was taken out when Alysa had her
surgery she had been back to the hospital for a follow up MRI on November
30th. Unfortunately, this MRI showed no positive progress and mentioned that
Alysa's right adrenal gland was almost back to normal size and shape. This was
puzzling to me since the surgeon removed Alysa's right adrenal gland during her
last surgery on October 24th. Call me crazy but something is not right. We
are still trying to get to the bottom of this one. Still thankful since the
news could have been worse. Alysa has also been back to her Doctors to
have her port flushed and blood work done. The next step is going to be the
repeat scans. Her current schedule looks like this: Wednesday Jan.
25th she is scheduled for her MRI and MIBG isotope injection. Thursday and
Friday she will have the MIBG scans and on Monday Jan. 30th she will have the
repeat bone scan. During this time she will also have the blood and urine
collected for the tumor marker tests. At present Alysa is battling a cold and
we are hoping that she can overcome it before the tests since we will have to
reschedule if she is not better. She has to be put to sleep for the scans and
if she is having respiratory problems they will postpone them.This will be a
busy week and we hope to have some results by the end of next week and I
promise to update the website in a more timely fashion than I have been
whether good or bad news. I am so sorry for this delay.
During what we are calling Alysa's break and of
course the holidays Alysa has been incredible. She had a hard time after the
last MRI but she has had some time away from the hospital now and she has
been pretty good. I say pretty good because she is still having some
sleep problems and she has started to have tantrums. I have been told that
maybe she has decided not to wait till she turns two to be terrible. She has
been sick and she is still getting teeth which seem to be taking much longer
to come in than any of the others that she has already gotten. Of course I am
always on high alert thinking that there may be something other than normal
baby stuff going on. She had decided not to walk instead she runs and
talking all the time. Her hair is growing like crazy and is so straight.
Her favorite word is "no" which I am told is quite typical at her
age. Last week we introduced her to the "potty". This has now turned
into her new thing. She will drag you down the hall to the bathroom pull off
her pants and diaper and make you sit with her while she thinks about going.
She talks and makes grunting noises and laughs gets up and sits down
several times and much to my surprise she actually went once I think that
I may have scared her with my screams of excitement and clapping then of
course we had to get Grandma to see what she had done. She was so proud and
Alysa danced around with joy. That was either an accident or she has just
decided that once was enough but we continue the journey to the potty at
least three times a day now.
Back to Our Christmas
My family and I have been through so much these
past several months since the diagnosis of my daughter Alysa Anne with stage
four Neuroblastoma and I have to say that I have once again been astonished
and humbled by the pure selflessness and unselfishness of people who have
never even met my most beautiful precious gift from God Alysa Anne or
myself. I have to thank the Boyle family for their huge self sacrifice this
Christmas that helped make Alysa's and my Christmas so much more meaningful
by their true acts of kindness. I have to thank the people at Progressive
Insurance, The Crawford Family, Dianne in California and all of Santa's
helpers for the gifts, cards and prayers that we received this
Holiday Season. Please know how grateful I am to everyone who made
Alysa and my family a part of their Christmas celebration
This being the first year that Alysa was
introduced to the birth of Christ, Santa Clause, the spirit of
Christmas, decorations including my favorite Christmas tree ( which is still
up), Christmas carols and the family gatherings (she was only four months
old last year at Christmas) so I wanted it to be special. On Christmas
eve a sort of tradition that started with my niece Stephanie (she
recruited three of my nephews this year) Stephanie and nephews David,
Michael and Anthony acted out T'was the night before Christmas and
sang Christmas carols as Alysa happily danced around and joined in as
best she could with the older kids. She was so happy. On Christmas morning
when Alysa awoke to the surprise of Santa Clause all you could hear for the
longest time was the excitement of her yelling "baby, baby" at the
sight of the new baby doll that Santa Clause had left her. What joy I felt
it is so hard to explain. As she riffled through the rest of her gifts I
thought that the day could not get any better. The look on her face with the
smile from ear to ear was overwhelming. I may sound kind of corny but I
could really feel God's love as I watched her examining her new treasures.
Later that day was spent with my family, we gathered at the home of my youngest
brother David and his wife Tabatha in Chandler, AZ.. All three of my
brothers and their families were there. Along with the surprise from
the Christmas caroling Boyle family we had a wonderful holiday.
Alysa seems so much older than sixteen months.
She loves playing dress up she is usually going thru the just folded laundry
to find a new outfit to try on and it is usually not one of hers. She makes
me coffee in her play kitchen that Santa Clause brought and much to my
delight she already likes tea parties. She sets up the tray with
cups and saucers and the sugar and creamer and the tea pot, lets not forget
the spoons (she likes to stir in my sugar). She loves to pour especially
since the tea pot plays music each time you tip it. She enjoys tub
time she loves to splash Mommy. She brings in a baby or two and she
makes sure they get washed and dried. She also likes to sing. She sings with
Grandma (she does not like when Mommy sings :( That's okay I love to listen
to them. She will take her babies for a walk in the carriage and put them to
bed for nap time. She of course does not believe that nap time should apply
to her since she is not a baby. She so enjoys standing on the chair
and turning the kitchen light on and off when you least expect it. She
thinks that is soooo funny. So between the sudden tantrums and the fight
against sleep time you can see that Alysa is a joy and a blessing. I thank
God everyday. Many thanks to everyone who includes us in your
prayers.
I pray that this new year will bring us all
good health and many happy times.
Much Love,
Lisa & Alysa Anne
November 20th, 2005
Welcome, its been a while since we updated. I'm
Lisa's Mom and I'll do my best to give you an update since Lisa has been
a little stressed and worn out, which is understandable. I hope her friends
will understand and not be angry with her for not returning their calls.
I also want to explain why the website guest book
has been down. We have had some undesirable people putting porno links
on our website and they had to be removed.
Monday Oct. 10th Lisa's boss at the Mayo Clinic
Research Facility called to tell her he was "dissolving" her
position so she would no longer have a job to return to. Someday, I hope
to be able to tell you how unkind and unfeeling Mayo Mgt. has been throughout
this ordeal. Monday afternoon Lisa had an appt. to see her doctor at the
Mayo.
Tuesday Oct. 11th we took Alysa to see her doctor
for a pre-testing checkup.
Wed. Oct. 12th we spent the day from 10 a.m. thru
4:30 p.m. at the hospital while Alysa was put to sleep for her MRI test and
she was injected with the radiation for the MIBG test.
Thursday Oct. 13th we spent the day at the
hospital where Alysa was put to sleep for the MIBG test. We were
scheduled to have the second half of the MIBG on Friday and take a biopsy of
the bone marrow but they said they had enough info on this test and she
wouldn't have to return on Friday. A quick call to the doctor brought
him down to extract the bone marrow and Alysa was kept asleep by a very nice,
stressed for time, anesthetist.
Friday Oct. 14th we were all exhausted and stayed
home and did nothing while we anxiously awaited the test results.
5:30 p.m. Lisa spoke with Dr. Abella and learned
that the results were not good. Neuroblastoma was still active in the
liver and the main tumor on the adrenal gland. Also the tumors showed
little change from the last test. It appeared that the last four
sessions of chemo. didn't do much.
Lisa was very depressed. This had been a
very difficult week and all the news was bad!
I don't know how to make you feel the terrible
heartache. Unless you're a parent who has been through this you can't
wholly feel the let down. Knowing you put your child through all those
grueling days of chemo, the crying, the sleepless nights, then to go through
these difficult tests, not being able to eat or drink many hours...going
through the trauma of being put to sleep by strangers and then having the
tests show little shrinkage of the tumors!!!
Monday Oct 17th we took Alysa to the doctors to
discuss the next step. Surgery! I was upset . I had forgotten that
we would operate again. We went upstairs to make an appt. with the
surgeon. Alysa's doctor who had performed her first surgery would be out
of town for awhile and we were advised not to wait. We set up an appt.
for Tues to meet with the new surgeon.
Tuesday Oct 18th we spent almost two hours at the
surgeon's office to find out the doctor who would perform the operation
was not available to see us. We rescheduled a Friday appt. to meet with
her and the surgery was scheduled for Monday, Oct 24th.
Friday Oct. 21st we met with Alysa's new surgeon.
Lisa and I both liked how seriously she explained Alysa's condition and
the surgery procedure. She had a daughter of her own and Lisa asked her
to operate on Alysa as if she were her own daughter.
On Sat. Oct 22nd we tried to make it a happy day
for Alysa.
On Sun., Oct 23rd Trisha from Target Photo Studio
came in on her day off to take a picture of Alysa in her Raggedy Ann
Halloween costume since their camera had been broken the Thurs. before when we
were scheduled for pictures. We were not sure if Alysa would be able to
celebrate Halloween after her operation and we wanted to have her picture.
Trisha is amazing at getting good pictures of
children. Alysa was not very co operative, but with patience, she got
some good ones. We'll have Deb put them on the photo
gallery.
THANK YOU TRISHA!!
The rest of the day was spent making Alysa happy
and praying.
Monday Oct 24th, after a sleepless night and Alysa
cranky from no food or water, she was admitted to the hospital.
Alysa was prepped for surgery and they took her in
at about 12:30 pm. She came downstairs at about 4:30 pm to recovery and
then to ICU. The surgeon said the operation went well. She removed
Alysa's right adrenal gland and the primary tumor. The tumor also was
scraped from under the liver, around the kidney, and away from the arteries.
A wedge of one of the larger tumors in the liver was also removed for biopsy.
Since there are many tumors throughout the liver, they cannot be removed by
surgery.
The next few days Lisa spent leaning over Alysa's
hospital crib trying to sooth her and keep her from pulling out her IV tubes.
She had a tube sewn in her neck, one in her
foot, arm, hand and later in the port in her chest. She also had a
catheter.
This was her second operation and her recovery
took longer and was very difficult. She came home Nov. 3rd.
Alysa is still not herself. She's afraid to
go to sleep and when she does she wakes up screaming. She has not been eating
as well. But she looks well.
Results....There has been some confusion regarding
the pathologist's report on the biopsy and we are awaiting a second opinion.
We are also waiting to have follow up tests that will decide future treatment.
We will go into detail regarding the results when all the finding are
confirmed. Until then, we will play the waiting game and will move
forward with scheduled doctors visits and blood tests, etc.
Lisa, Alysa, and I want to wish you all a Happy
Thanksgiving! We thank God for bringing Alysa through another surgery!
Thank you for all your prayers and well wishes
you don't know how important they are to us. We cry along with your
stories and laugh, too. Our hearts go out to all of you who have lost
children.
Best wishes to our friends Jenny and Steve who got
married ..we love you. Best wishes to my godchild, Robin and her new
husband Rick..we love you ..wish we could have been there. Also, best
wishes to my niece Cheryl and her new husband Chris ..we love you and hope all
of you have a very loving and blessed life together!
October 7th, 2005
Hello everyone,
Today is Friday October 7th 2005 and I am so late
in getting an update posted my apologies.
Alysa underwent what is supposed to be her last
Chemo number 8 on September 19th and all went well. She was quite ill for a
few days afterwards and she was upset as usual it was a long day, but we
were able to keep her occupied as Grandma and Anthony her four year old cousin
joined us for the day. She just loves Anthony and he likes to play with her
(sometimes) you know how boys are.
After Alysa's ten days of neupogen she has this
week off no meds no tests. Alysa is doing great this week she is acting
like a normal happy toddler. She is walking with her popper car that she got
for her birthday, she rocks her baby doll hugs and kisses it and puts it to
sleep she even puts her finger to her mouth to let Grandma and I know that we
need to be quiet her baby is sleeping. She is so smart I asked her if her baby
went "poopie" and she turned him over and pulled back the leg hole
of his outfit looked inside, sniffed then looked at me and shook
her head "no" . Mom and I were in shock soooo funny. Her hair is
coming back in and it is quite dark last time it started to come back in it
was blonde can't wait to see how this turns out.
We are gearing up for next week at which time
all of her tests will be repeated. The results should tell us if there is any
more active tumors and the answer will decide what happens next. Her Doctor has
let me know that we will probably have to go for a consultation with the Bone
Marrow expert in Tucson which I of course have known all along, but you never
know I am keeping my fingers crossed and my prayers loud and would
appreciate that everyone do the same also. On October 11-14th she will be
having an MRI Scan, CT Scan, an MIBG Scan which is a three day ordeal and
also a bilateral bone marrow biopsy.
Please take a look at the photo gallery I received
a wonderful pencil drawing of Alysa from James Minner in Las
Vegas who heard about Alysa thru the website. Thank you James it is
beautiful.
Thank you everyone for the love and support.
Please say extra prayers for a positive outcome this and next week.
Much love to all,
Lisa & Alysa
September 14th, 2005
Thank you!! Thank you!! Thank you!! To old
friends, new friends, family, the bands, supporters, Leslie and the staff at Cooperstown,
Mike Mattingly and of course Debbie and Steve Keith for what turned out
to be a great time to have fun, meet and greet people and for just a few hours
to forget about my problems and to see Alysa and my family just enjoy the
happiness of the moment. It was overwhelming to see how many people showed up
to show support for my Alysa and my family. We cannot thank everyone enough
for all the hard work with the raffle (we are still working on notifying
winners), organizing the bands that shared their talent and even donated songs
for a compilation CD that Debbie put together it is just great. Everyone
involved did a wonderful job. What a professional job Deb did not only with
the music CD but the video that was shown on the giant screen was just
amazing.
Without Debbie and all of her hard work and
long hours none of this would have been possible and for that I thank
her, but more importantly I am so honored to say that she is my friend
and I will never forget all she has done for my daughter Alysa and me.
Debbie and her family will always have a place in my heart and be in
my prayers.
With much Love and thanks to all,
Lisa
Tuesday, September 6th, 2005
Hello All,
Monday morning August 29th 2005 Alysa was admitted
to Banner Desert Hospital again for her seventh chemotherapy session.
Where she spent her days with the port in her chest hooked up to an IV for
her treatment and thankfully we were able to unhook the IV at night which
made it easier for her to try and get some rest.
On Tuesday we were able to postpone her chemo
session for an hour so that we could have a Birthday celebration with the
nurses on her actual birthday. Grandma brought Alysa's party dress and
party hat to wear. Alysa's Uncle Kenny, Grandma and cousin Anthony were also able
to attend. Music Man Mike played guitar everyone sang Happy Birthday and
again Alysa was in her glory. Alysa passed out the party favors that her
cousin Stephanie and I made to commemorate the wonderful occasion. She also
had a great time passing out party loot bags to other patients who
unfortunately were in the hospital that day also. We hope that everyone
is doing well. She had an especially good time when Anthony climbed into her
crib with her to play she could not stop laughing.
Alysa got thru this chemo session better than the
last one. This may have been due to all of the excitement with her birthday
and all of the attention. She did not sleep well as usual and she did get
sick on Tuesday evening and again on Wednesday but you could tell that she was
happy. We were able to go home on Wednesday night and finally Alysa slept if
only for a few hours that was fine with me. She has been irritable and crying
a lot since we have been home and I have to keep in mind that she is getting
four new teeth all at once which is surly part of her fussiness. She is
getting her Neupogen injections everyday and will have her blood work done on
Thursday.
Alysa has one more chemotherapy treatment
scheduled before we have all of her scans done again to see how things are
progressing.
We are looking forward to the upcoming benefit at
Alice Cooper's Town in Phoenix on Friday September 9th for those of you in the
area we would love to see you there.
Thanks for the prayers and support.
Much Love and thanks,
Lisa & Alysa
CONGRATULATIONS to one of my best friends Jenny on
her wedding to Steve so sorry that we could not attend. Our Love
and prayers are with you both.
Love Always,
Lisa, Alysa and Mom
Also, a special Thanks to Deb and Cindy from
Delton, MIchigan for
the beautiful bracelet that she made especially for me I will treasure it
Thank you from my heart. You are in my prayers also.
Much Love and many Thanks,
Lisa
Monday, September 5th, 2005
Wow!!!! Alysa is already one year old!!! Six
months ago we did not think that she would make it to be a year old. We had a
celebration of life open house first birthday party on August 27th. We
had over fifty family, friends and supporters attend. My family and
I were especially glad to finally meet a few of the families that I have been
in contact with via e-mail and telephone who unfortunately have had first hand
experience with childhood cancer and have been a tremendous support and help
to us during this very difficult time.
Alysa had a wonderful day. She loved meeting everyone
and anyone who was here could see that she loved being the center of
attention. She did not even take a nap and she was going like the
energizer bunny all day. I helped Alysa blow out her candles and I was sure to
help make a very good wish for her. Can't tell or it won't come true let's
just say I think that we all would have the same wish for her. She ate cake,
opened presents and had a wonderful time with all of the kids. I was just so
happy to stand aside and watch my beautiful little girl smile, laugh and
play with everyone.
I am sorry that I did not get to spend more time
with each of you as I would have liked but, I greatly appreciate that you all
came to celebrate this important day with us and made it such a wonderful
experience for Alysa and my family.
I would also like to thank family, friends
and all who sent birthday gifts, cards, well wishes and
prayers. Please check the photo gallery on Alysa's website www.alysa-anne.com
for some birthday pictures.
Monday, August 22nd, 2005
Hi All,
Just a quick update. Alysa was supposed to go for
her 7th Chemo today, but after the blood work we found out that her counts
were too low and we have to wait. She is now scheduled for next Monday
just to make sure that she has had enough time. I made sure to ask if she is okay
to be around lots of people and kids this weekend and the Doctor said that she
will be just fine. It will be good for her.
Thanks everyone for the prayers and we hope
to see you all on Saturday.
Love,
Lisa & Alysa
Tuesday, August 16th, 2005
Hello All,
So sorry for the time lapse in my updates. I
have been down since Alysa's last Chemo and we have been having a time of it
since. On August 1st Alysa was admitted for her 6th chemo treatment. Alysa has
been very irritable and not quite herself. It was very difficult for the nurses
to access her port this time she wanted nothing to do with treatment. Finally
her port was accessed but not for long. She was so upset and irritated that
she wound up pulling her needle out. Thank goodness that the Chemo had not
started yet. It was even worse to get the port accessed again. Finally, she
had to be given something to calm her down. This was the worst for Alysa she
seems to be fed up. The nurses were all upset by the way Alysa was acting she
was just not herself.
After being home a few days Alysa seemed to be
getting a little better. She is still waking up during the night with the
screams and it is even more difficult to console her. Needless to say I have
not been getting much sleep. My poor baby I wish there was something that I
could do. I just want to take her pain away.
With Alysa cutting teeth it is so hard to figure
out what may be wrong when she is so irritable, but over this past weekend
Alysa started having high fevers. Is it her teeth? Is it an infection?
What do I do? Turns out that Alysa had to be admitted to the
Hospital on Monday morning in need of a blood transfusion due to low
blood count and antibiotics for low grade infection. Alysa was put on
high doses of IV antibiotics over several hours and then again the next
day and in the meantime she was also given blood. This seemed like
forever as Alysa was not happy and did not want to be in the Hospital.
Okay, I need to get on to some good things. Alysa
is getting two more teeth. She is crawling around like crazy and pulling
herself up on everything. Alysa will be a year old on the 30th of this month.
Six months ago we did not think that she would make it to her first birthday.
Now we are planning a birthday party for her.
Thanks again for all of the Love and prayers we
are so very grateful to everyone.
Much Love,
Lisa & Alysa Anne
P.S. Just a reminder to those of you in the area
there will be a fundraiser Friday Sept. 9th at Cooper'stown we would love to
see you there.
Monday, July 25th, 2005
Hello All,
Alysa was in the Hospital
from July 11th to July 13th for her 5th session of Chemotherapy. She did
okay this time it was just hard keeping her from pulling on her tubes. It
is not as easy as just covering them up so that she can't see them
anymore. She wants to be all over the place and rolls around the crib so much
she gets all tangled up and ends up crying to get unhooked.
The doctors were able to disconnect her from the monitors and tubes
overnight so I was able to take her out of her room in fact she got to
drive her car to the Hospital cafeteria and back she just loved that.
She has four teeth now two are on
the bottom and two are on the top. She likes to show them off and has
discovered that if she bites down on your finger she can make you scream.
She thinks its funny and laughs and giggles with her big smile. She has
started crawling now and pulled herself up to stand in her crib. Look out we
may be in trouble now!!
On Wednesday July 20th Sabra Gertsch from Fox News
came over to meet Alysa and interview us for an "Only on
Fox" news segment. I spoke with Sabra today and the segment is scheduled
to air Tuesday July 26th on Fox News at 9 P.M. Channel 10. I hope
that it will help people understand my need to have a child and the
love that I have for her and the horror of Neuroblastoma I have not seen
what has made it to the final cut, but Alysa was certainly a character while
the camera was on.
We also got conformation that Michael Mattingly
has arranged a fund raising event that will take place at Alice
Cooper'stown Restaurant/Bar on Friday September 9th 2005. We will update
information when it is available and hope to see everyone there.
Thanks again to everyone for all of your help and
prayers please keep them coming.
Much love to all,
Lisa & Alysa
Saturday, July 09, 2005
Hello All,
We had been invited to attend church services at our neighbor's church. On July 3rd the Sunday before all of Alysa's repeat tests we took them up on their invitation and went to Citichurch in Scottsdale with them. We enjoyed a rousing 4th of July service. After the service the pastor and the elders prayed over Alysa and asked God for a miracle!
July 4th my brothers Anthony,Kenny and their families came to celebrate the holiday.We missed David and his family. We ate, went swimming and Alysa played with her one year old twin cousins. Later they went to watch the Tempe fireworks.
Wednesday, Thursday and Friday were spent at the hospital from morning until night while Alysa went through tests. An MRI scan, bone marrow biopsy and an MIBG scan. The tests were long and the necessary recovery time from anesthesia made for very long days, but the anesthesia helped to make the time spent testing less traumatic for her.
NOW FOR THE GOOD NEWS!!!!!
The doctor called me Friday evening to tell us the good news. The MRI shows that the multiple tumors in the liver have shrunk in size but are still active... and there is significant shrinkage of the still active primary tumor on the right adrenal gland of about 30%.... THE BONE MARROW IS CLEAR OF CANCER!!!!!! The MIBG showed no active cancer in the breast bone. However, Alysa still has active cancer on both sides of the neck and we are waiting to hear about the cancer at the base of the skull and around the eyes but the doctors are pleased with the outcome as are we.
We plan to continue with her current chemotherapy protocol which consists of four more sessions. Monday if her blood counts are back up we will get started with chemo number five of the expected eight. We have been cautioned that future tests will decide whether or not she will need a bone marrow transplant. But things are looking up.
We thank you for your prayers. They are working. Please keep praying for her.
Lots of Love to all,
Lisa & Alysa
Wednesday June 29, 2005
Hello All,
On Monday the 20th, our day started out a little rough this
Alysa's fourth chemotherapy session. After the doctors office visit and being admitted to
the hospital we ended up waiting for blood work to be done and found out that her counts
were low. We waited for several hours to find out that the doctors decided to continue
with her treatment and we did not get started until late in the day around 4:30 PM.
Alysa is getting more and more independent. While in the
hospital she likes to do what she wants and does not cooperate as much as she did when she
was younger. We have a tough time with the blood pressure cuff which has to take her
pressure every fifteen minutes while her chemo is being administered. She does not like
it, who could blame her I would hate it also. She is always off any kind of schedule that
she may have been on so sleep for her seems to be intermittent at best. It just seems to
me that when she finally gets to sleep is when somebody needs something from her.
At the suggestion of my Mother this trip to the hospital we
brought along with us a plastic storage container that I used as a bathtub. Once the nurse
and I got her port sealed off well enough to keep that water out I set it up on the floor
needless to say this was the highlight of Alysa's stay. I will have to remember to put
down more towels Alysa just loves her bath time and she splashes like crazy. Nothing beats
soaking in a warm tub.
This stay seemed to last forever. Alysa was very irritable and
she did not eat any food this entire stay except for her formula. Not even a cookie
or ice cream enticed her to eat.
Alysa has been scheduled for her repeat scans. She will be
having bilateral bone marrow biopsies, MRI scan and MIBG scans. We are scheduled for July
6th. We are keeping our fingers crossed and saying our prayers that the tests will show
the treatments are working.
Everyone please try to fit in an extra prayer here and there
this week that the test results are favorable. These tests are going to tell us if we
should continue with the current protocol or if we have to make some major changes to
Alysa's treatment plan.
Thank you all so very much for your support during this very
difficult ordeal.
Lots of Love,
Lisa & Alysa
A sneak peek at Alysa's nine month pictures.
![T81101077_001_017[1].jpg (26654 bytes)](images/T81101077_001_017[1].jpg)
Sunday June 19, 2005, Second Update
Alysa and I are very grateful to three very special people.
Teresa Tinder who took the time (away from her own family) and trouble to set up
the "Funds for Lisa" account. Steve and Debbie Keith who created and set
up this web site. All of them were acquaintances of mine who turned out to be more
than friends but Guardian Angels. How do I find the words to thank people who are
helping to save my daughter's life.
They give my mother and I hope and support. When I have spent the night
rocking my crying baby and I am feeling hopeless and depressed, then the phone rings or I
get an e-mail from Debbie to show me information that children with stage IV neuroblastoma
are surviving!!!!! It lifts my spirits.
Teresa brings me, not only contributions that people have sent but wonderful cards
and letters of prayers and wishes from caring people who are strangers to me.
To them, I say a heartfelt thank you, although I know it is not enough.
I would also like to thank my Aunt Nancy and Uncle Ralph in New York for linking
Alysa's web site to their business web site www.ralphscountryrealty.com
and for all of their love and support. Thank you to all of my New York family and
friends for all of their prayers and support. A big thanks to Nancy, Jamie, Cheryl,
Joe, Peggy, Mike, the entire Lee Lab and Tammy, just to name a special few.
Thanks to Laurie Roberts
for her May 7th Column in the Arizona Republic that helped to get our story out to the
public.
Thanks to Vinnie Della Speranza from the NSH who mentioned Alysa and I on the
Histonet. From which we have gotten regards from as far away as New Zealand.
Much Love to all and please keep the prayers coming.
Lisa & Alysa Anne
Sunday June 19, 2005, First Update
Hello All,
On my last update I was waiting for the doctors office to call about the lumps and
swelling that Alysa was experiencing. Well, we wound up taking her in that day as the
doctors were concerned it could be an infection. They are watching her closely since she
also developed a rash on her arms and legs the doctors are frustrated as to what it could
be. We took her to see the doctor three times last week and twice this week to be checked
out. The doctor said that the chemotherapy in some cases may cause Lymphoma. Together with
the lumps, swelling and rash they decided to access her port and take blood to send out
and have it checked. Luckily when we got the results the next day they were negative. The
lumps they say in this case may be normal. "Normal" I said what is normal. They
are going to watch them.
Wow this has been a difficult few weeks. Alysa as you all know did not respond
very well to the last chemo and the diarrhea and vomiting continued on and off this entire
time home. She started again with what the Doctor told me may be night terrors. She wakes
up screaming this blood curdling cry and it is very hard to get her to calm down sometimes
it is like she is still asleep and she is having a nightmare so we have not been getting
much sleep.
Through all of this my baby still manages to give me a smile. I have to keep from
crying.
She is also having a tough time with her beautiful little teeth that are coming up
from the bottom and I think that we may see a top tooth soon.
We went for her blood work again yesterday since we stopped the neupogen on Sunday
to see if her counts could hold up enough to get her next chemo which is scheduled for
Monday and everything looks good. We will go to the Doctors office as usual to get a
general check-up and repeat blood work and if things are good we go right over to the
hospital to get admitted for what will be her fourth round.
Sending our heartfelt thanks for all of your prayers.
Lisa & Alysa
Monday June 6, 2005
Hello All,
Sorry for the delay in this update. I am still recuperating from
the hospital stay last week. On Tuesday we went to the oncologists and had her blood work
done. Her wbc was 7.7 finally up from the 4.1 which delayed us last week. We went right
over to the hospital at get admitted. This was a three day stay and Alysa was much sicker
than the last time. She did not sleep much over the three days there was a lot of crying
and the vomiting started on Wednesday.
There was a nurse who did her chemo this time she was more
experienced with infants and chemo she turned out to be very helpful. She said that
Alysa's crying could be from the burning that occurs when she passes urine or has a bowel
movement. The poor baby even when she passes gas she cries. She also told me I should be
wearing gloves when I change her diaper after her chemo for a least three to four days
since I could get sick from the poison. Frustrating!!
We finished her chemo on Thursday afternoon and were getting
packed up to go home when Alysa had what I call a blow-out. She was sitting up in the crib
with pillows all around her we were just talking about going home as I packed the bags,
it's kind of like moving in when we go to the hospital we need so many things. Anyway,
Alysa was laughing and smiling and it turned to cries her arms waving like crazy and I
when I went over to her everything including Alysa was covered in feces yuck!! My poor
baby. it was disgusting. What a mess and did you know that a pediatric oncology unit has
no bathing facilities for infants or children. The sinks in the room are tiny and they
don't have portable baby tubs or anything. We finally went home later that evening. She
continues to have diarrhea but is vomiting less with medication.
Okay, now for the bad news. Over the weekend we found more lumps
on Alysa. She now has lumps on both of her feet around her ankles and on the back of her
neck. These lumps were not there before. We were expecting that the lumps she had to be
getting smaller not the she would be getting more lumps. I will be taking her back to the
doctors on Wednesday for her scheduled blood work unless the call that I have in to the
office changes this.
Again, I thank everyone for their prayers,
Lisa
Alysa at the Pool on Memorial Day
Monday May 23rd, 2005
Hello everyone,
Thought that everyone would like an update. We went to the
Doctors office this morning for our check up before going over to the Hospital to be
admitted for our third round of Chemo. Alysa had her blood counts checked and they are too
low to start. She now has to be watched closely for fever or signs of
illness. We will go back to check her counts on Wednesday and if things go well we
can continue next week. I will update everyone as I find out what is going on.
Good news: Alysa is getting her first Tooth. Bottom right, it
started to poke through on Tuesday. Hooray!!!!
Many thanks to all for your much appreciated support and
prayers.
Alysa on Saturday driving her cousins car
around. She looks so happy! I still can't believe that she is so sick.
Friday, May 13th
Hello all,
I would like to keep everyone updated on Alysa's progress so I
thought that I would try to keep up a general e-mail to all since it is sometimes hard to
get back to everyone individually. I hope that no one minds. Please let me know if you do.
As of Tuesday, 5/10/05, Alysa's counts were so low that the
doctor told me to expect to have her admitted for a transfusion on Friday. We went this
morning and her counts (wbc went from 2.2 to 10.8 the good range is 5.5 - 17.0) have risen
to the point that she did not need to be admitted for the transfusion. I am so happy
about this. This means we are still on track for her next chemo. Thank God.
I believe in the power of prayers.
Thank you, Thank you, Thank you, for your prayers, keep up the
good work!
Lots of Love,
Lisa and Alysa
Saturday, May 7th, 2005
Laurie Roberts article is published in Arizona Republic (will be
posted if/when we get permission)
This picture was taken the next day…
Mother’s day
Friday, March 25
My mother and I kept asking the doctor about her stomach it was
distended and slightly hard from about four months old. The doctor said it was nothing but
I pursued it several times and finally fought with the doctor to do something and she
ordered an x-ray which showed nothing. I kept bringing her back to the doctors and kept
calling her office and finally she ordered a ct scan to "finally put my mind at ease
since there was nothing wrong" so she said. It was a horrible ordeal trying to get a
vein access on her and she would not drink the contrast we were at the hospital all day I
was even going to leave and forget about it but I just felt that I had to do this I don't
exactly know why I just knew that I had to. So a nurse and I forced the contrast into
Alysa so that they could take some pictures then the radiologist said we have to get an iv
in her to inject her with a better contrast of course I was not happy since they tried
several times before and stuck her at least six times but another nurse came in and she
got it in her foot the first time divine intervention? They took more pictures and I
thought that we could go home Alysa was exhausted as were my mother, four year old nephew
and I we were all there all day. But they told us that we had to wait as soon as they told
me that I had to wait they were going to call the doctor (it was now after five pm) I knew
that something was wrong but I still never thought of anything this bad.
This picture was taken just a couple of weeks
before diagnosis.
