May 29,
Hi all, I know it has been a while since we have written. But things
took a hard curve ball here and we had no energy to write. Laura is
presently in the intensive care unit-because for right now she requires
a lot of medical and nursing attention. As many of you know, her counts
are taking a long time to come back to fight infection. In addition, she
has had blood transfusion and platelets. Now, she is about to have a
white blood cell transfusion-something new for us! It is not a common
thing done here but it has been around for a while...
Laura has another positive blood culture infection with no cells to
fight infection. On top of that, she ended up with third degree burns
that ended up in severe blisters that broke and ended up infected.
The pain is intense, however she is being carefully watched by many
departments besides oncology -- for example some are the following -
GI surgery, gen. surgery, infectious disease, gyn., wound care,
radiology.
Last night was pretty bad but this afternoon she suddenly made a good
turn! Soon we will be back in our regular room. She has been here at
CCMC just about a month! We miss Joelle so much.....
I know many of you want to visit Laura, but until her counts are up,
please wait to visit. You may feel good but do not know if you are
fighting something. This applies to runny noses as well from allergies!
Plus, Laura's energy is fragile now and really does not want the energy
pull of visitors. Soon things will change, and thank you for caring!
She needs to hold all her energy to getting better and heal.
Well, the WBC are here, so I want to sign off and keep an eye in case
she gets a reaction.
Please keep the cards coming to the hospital-it lifts her spirits! And
remember to post messages to Laura and Joelle.
Most of all pray for her healing.
Love,
Mom
May 23,
Hello all! Thank you all for the prayers for Laura and good wishes
for her recovery. Right now, she is quite uncomfortable with many sores
in her mouth and throat from the chemo. She had another platelet
transfusion yesterday. Her stomach pains are better and many of the
other pains as well. She still has a 0 ANC. with reoccurring fever.
At this time Laura does not have the energy for visitors -
but I will let you know when she will. She does enjoy receiving mail at
the hospital. The address here is:
Connecticut Children's Medical Center,
282 Washington Street,
Hartford, CT 06106 -room826.
If you send it home she will eventually get it, but I am not at the home
regularly to pick it up.......thanks....
Today she will have a double lumen hickman put is for her medication.
Her old port was removed a couple of days ago ... wish the ANC would go
up and the fever gone...
Take care
Mom
May 20,
Good day to every one, hope all is doing well. I am starting to
surface and reading everything I can on Laura's treatment -- she had a
better night last night. The stomach is still hurting -- so her food is
by IV to give the system a rest. Her port change on the OR is supposed
to be tomorrow now, but due to a recent infection, we will find out if
she still qualifies tomorrow.......that is this life now!!!
My motto-plan by the minute!
Her ANC count is o and platelets are low, so she will need another
platelet transfusion.....
Yesterday, Joelle came back from NJ where she was presented by Ed Ryan,
head of The Olympic Committee a gold medal which was written best SIS on
it!
She was made to feel so happy and special at the Chiropractic Sports
Physician symposium sponsored by the NJ Chiropractic Association.
Thank you to Uncle Phil and the NJ Chiropractic association with the
Council of Chiropractic Sports Physician and New York Chiropractic
Association.
This evening, St. Anne's church is doing a living Rosary with
the intention for Laura. If you want to go I believe it will start
around 7 or 7:30 PM. Prayer is so important for us. I have seen focused
prayer work on Laura so many times.....
Love,
Mom
May 18,
Hello everyone, thank you for all the support you have given us in
many different ways.......For those who have not been part of pediatric
oncology it is often a roller coaster depending in the type of cancer
and the treatment. While there are complications that can be severe at
time, the chemo has decreased the pain. Laura this week was
allowed to come home for a few hours on Wed. and Fri. Her counts were
dropping Wed. so they said no company as we were leaving and to be
prepared for a transfusion when we return. Laura was SO happy to be home
then. By Fridays her counts were down to 90 and she was very weak-but
she wanted to be home for a few hours. Well, we had to cut it short and
come back to the hospital because she was feeling very weak and in pain.
On the way back while driving, she passed out on me. I got her back
awake and decided not to do the high way in case of a problem or
traffic-well I made an incorrect correct turn heading the
wrong way from where I wanted to go while frantically talking on
the phone to Laura's nurse. Suddenly, there was a Farmington Rescue car
by a house-so I quickly pulled over and ran to them to arrange for an
escort or ambulance. An angel had to guide us! They were wonderful, and
in no time she was getting hooked up to the monitors and they called for
the ambulance.
Her counts are lower and she had a platelet transfusion with a fever.
She has an infection with an ANC of only 10. So please, at this time, do
not visit her until her counts are up and you call first to see if it is
OK. When she is home again and feeling stronger it will be great for her
to have quiet company sit with her and talk or watch a video or play a
board game etc.
Please pray for her.
Love,
Mom
May 14,
Hi All, I know that many of you are looking for an update from Laura-but
right now, she is very low energy and with temporary blurred vision as a
result of one of the meds. At this point she is on her 6th day of hard
chemo and is feeling the severe fatigue, nausea and vomiting, bladder
irritation, stomach cramping, fear. She sleeps most of the time. Her
counts are slowly dropping which is norm so please do not expose us to
any illnesses. This morning however, she started off quite good-she
showered and went downstairs for breakfast. Shortly after that she was
being given treatments, bandage changes, examinations and then back to
sleep. As she slept, I watched her like when she was my new born baby
breathing. As many parents, I love my babies so much! And, they will be
50 yrs. old and I around 90 and they will always be my babies-only, a
little taller than I am!
Some times during these moments Laura and I have our most affectionate
time talking about how much we love each other. The same feelings are
about and for Joelle. Laura is always concerned about her sister.
Today, I was able to arrange for a pass for Laura to
go home for a few hours on Wed. if she is up to it!
This will be good. BUT - for the GREAT news
we have an answer on Joelle's blood test. She is a PERFECT
match!!!!!! The odds were not good for this-1 in 4.
We are so excited because now we know that we have to get her in
remission again and no infection anywhere and pass some scans, etc., and
off to Boston's Dana Farber for bone marrow transplant from Joelle. When
I called Joelle to tell her that she was a 100% match she was so excited
and realized the important role she has in this. I am so proud of
them...
She will be another "hero" for transplants! When you see Joelle, remind
her of how great a sister she is!
A few hours earlier, one of the docs was saying that if Joelle is not a
donor, they would scan the national directory for someone and if not
there, go to the European lists because of our nationality backgrounds.
This could take months to locate and arrange for the person to go to
Boston. And by late afternoon, Laura's doc came in with the nurses
showing us the test results and took our pictures smiling big smiles.
Now, for all of those who were going to go on a list for Laura, please
do it for someone else. A few years ago I registered for a drive for a
girl in Canton never thinking that my child would need it, and here we
are! Give someone the chance of making it-consider donating bone marrow
if you are able to.
Tonight I sleep with a warmth in my heart.
May
9,
Hello all from CCMC - Laura is being pain managed -at times she is
quite good and then suddenly it hits hard....She is going to start a
hard chemo to get her ready for Boston's Dana Farber.
Needless to say, my heart hurts as does her family and friends. The
staff say to me and Laura that she has the right attitude and will be a
long term survivor! So please, send her notes with positive thoughts
that are up beat for a 14 year old. Joelle slept here for 2 days -they
put 2 beds together....we needed this......It would be great if she
matched Laura -but that is a 1 in 4 chance...... so time will tell.
Thank you all for all that you have done....
Love
mom
May
6,
Hi All, Laura had a special event today. Since she could not go to
the Confirmation ceremony today, we were honored by having the Bishop
come here and confirm her! She looked so beautiful sitting in her
Confirmation robe in a chair. Jolie, her sponsor looked beautiful and
proud as well! She had about 20 people show up at the hospital to
witness this! Joelle was great today, she watched guard for Laura when
she had to rest. I miss her so much.......and am
SO proud of her.
May 3,
Hi all-We are still at CCMC. Joelle has been with the Buenome family
and now the O'Connor family. Laura has had quite a severe time with
pain. Needless to say,
I am worried.....At 7 AM she will have a scope done in the OR. So far
they are thinking the esophagus has something brewing -- hopefully, only
infection.
Mom
May 3
Laura was taken by ambulance Tuesday night from Bradley airport to
Connecticut Children's Hospital ER. She has been in constant pain with
episodes of extreme pain. They are trying to pain manage her and find
out what and where the pain is from. This morning early, a scope of the
GI will be done. Presently they are thinking it is a problem in the
esophagus. All prayers are welcomed.
If it is not a major problem, her hip replacements have been moved up to
May 14 at Waterbury Hospital -due to that pain. You can keep updated by
Laura's web at WWW. Laurasurvivaljourney.com
Joanne
May 1,
Hello all! Hope all is well!
We had a great time on our vacation.
The water was beautiful. My brother Jim, sent us to rest at Turkes and
Caicos.
The water was crystal clear and beautiful.
Joelle took breaks from us and participated at the activities for her
age. Laura slept a lot and enjoyed the water and sunshine as did I! Then
on the second flight home she had severe pain and had to be taken out
from the plane by the paramedics and brought to the ER at CCMC. What a
hard time for the three of us....
So, they are controlling her pain and checking to find out what is the
problem.
On the up side, Laura will be having bilateral hip replacements May 14
at Waterbury Hospital! This will be better than her waiting until the
end of June. All the pains are "wearing " her out. Please pray for the
pain to be lifted and the hip replacement goes easy.
God Bless,
Mom
April 21, 2002
Hi All
-can you imagine? Snow, heat wave, earth quake and snow coming
again!!!!! Not sure what clothes to keep out!
We are doing ok -we went to the ER the other night to get Laura some
break thru pain relief. It gave her a break.....Joelle went too. We got
home about 2AM!
Joelle was a good help that night.
Well, have to go - Laura needs me. Will write more another time!
Mom
April 13, 2002
Hi all! Spring has sprung and the flowers
are budding - hope it stays......
We are doing well- and look forward to the vacation that my brother
"Uncle Jimmy" gave us as a present to the beach - we cannot
wait and the warm weather will be so good for her and Joelle and me!
Last week was a year since she was diagnosed-hard to believe and yet it
feels like it has been our life time.
As for Laura, we just found out that the surgery core compression did
not work and that the second hip did collapse which explains why the
pain is so bad.
Of course, we always fear that it is the cancer being active-so, so far
so positives for that being the reason -- just side effects of the
treatment. So we are looking at a double hip replacement and the
problems are that it cannot be cemented because she is young and will
need replacements down the road.
Also, which type is important because she is immunosuppressed for an
implant and some of the chemos affect bone healing...... Monday she has
chemo and exam at the clinic with an MRI of the spine on Tuesday. I will
feel better when those reports are in. If things are OK this will be
done in June and July.
On the upbeat, Craig gave Laura her CD of "There you'll Be".
She sounds so pretty on it. If you want to hear it let me know!!! We
were so happy -Thank you Craig and your fellow musicians for giving her
this experience!!!!!!!
As for Laura's school work-we just received her 3rd quarter report. So
far she has 2 A's one A+ but 4 incomplete which is almost done! And her
last 1st semester grades were 2 B+, 3 A-,1 A,1 A+!
This semester Laura has a cooking class-we are definitely benefiting on
this! She is doing foods from different countries.
As for Joelle-it is now the ending of Pine Grove activities starting up
now.
I cannot believe it is almost here. It was yesterday when Laura was
doing this.
Soccer is starting up again-last year we could not do any thing. This
will be good for her! Joelle is also doing well in school and taking her
report on an artist very serious. I am proud of her too.
As for me, Yep I am tired and nervous at times. At times I wish I was
that little girl with my parents to help make decisions-but that is what
happens when you grow up. So kids-do not rush it! My brothers gift will
be good to get us ready for Laura's next procedure.
Take care all and remember April 15th is here. Did you file your
taxes?????
Love,
Mom
April 1,
APRIL FOOLS everyone! Watch for the tricks! For those who celebrated
Passover or Easter, I hope that you all had peaceful ones.
Last Easter we were in the newness of the diagnosis for Laura with all
of its complications. How grateful that I stood by her in church
yesterday thanking God that my daughter is with me. Joelle was singing
and praising the Lord from the choir loft. They did a great job!
This year has brought new friends to us-people from the hospital and
from our community. We as a family thank all who have been there with
us!
Old dear friends and new ones-even old friends that have moved or I lost
contact with, have come back into our life! We are almost half way
there! With no delays she will have a little more than a year to go of
chemo-but who is counting!!!!!!! As for her hips-something will have to
be done about them -- they give a lot of pain. Anyone who is good at
computer searching for pediatric hip replacement information and has the
time, please let me know what you find! I have plenty on adult-but very
little on children.
Well, I have to figure out how to trick Joelle into getting up for
school!
Have a fun day!
Love,
Mom
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