For those of you who know
and have been following my "Baby Jessica", you know the trials and tribluations
of life that this young lady has already faced at such a young age.
For those of you who do not know of Jessica's
medical history, I will give just a brief summory here. During the end of my
pregnancy with her, I was having allot of sickness, I couldn't eat, because I couldn't
keep anything down. I was losing weight, and the baby was always in distress at each
ultrasound. The baby's heart rate was increasingly irregular.
I went to my pre-natal visit on May 7, 1997,
and the baby's heartbeat would stop beating every few seconds. The doctor told me
that if the pregnancy continued, I would put both myself and the baby in jeopardy.
My precious baby was not supposed to be born until May 30th, 1997. My doctor told
me, that if we were lucky the baby weighed 3 lbs, but no more than that. She
informed my husband and myself that there was no choice but to induce labor, because the
baby was in serious trouble. So we asked her to give us at least a day to make
arrangements for our 4 other children at home.
On May 9, 1997, my husband and I arrived at
the hospital at 5 a.m. as instructed. It was a very painful labor, but at 1:12 p.m.
our little miracle baby was born. The doctor was suprised, as the baby weighed 5
lbs. 4 oz, and was 19 inches long...I was suprised this child was a GIRL...I was expecting
a boy, and had everything ready for a boy. Needless to say though, I was thrilled to
have a second little girl. Although Jessica was forced to be born 3 weeks early, she was a
healthy happy baby. No signs of of damage to the heart, no damage to anything. She
scored a perfect 10 on her APGAR tests, 3 times.
Jessica was happy and healthy all through the
first 6 months of her life. Then Dec 1, 1997, she developed a high fever of 104.8.
We rushed her to the hospital immediately. They told us at first she may have
just caught a bug, and as long as she was eating, not to worry about it. Well the
next day, she got worse, she could not keep down anything, her fever would not break for
all the gold in the world. And she started to be cranky and irritable. I took her
back to the hospital, this time to be told she had an ear infection and was given an
antibiotic for her and told not to worry because the antibiotic would kick in, and she
would be fine.
Well the month of December was nearly gone
and this child was still sick. Her fever still would not give, she was throwing up
bile all the time, and she would not eat, she cried constantly, and I mean constantly.
I was not sleeping because of her crying. She would sleep for an hour or so
and if I was lucky I got to catch a few winks.
Then as we got hit with the Great 97-98 Ice
Storm, things just went downhill from there. She was crying, and you could hear the
pain in her tears. She was beginning to have trouble breathing, and we were at the
end of our ropes. The ice storm was bad enough as it was, add a sick child to that and
what do you get?
Anyway, we made several trips to the
emergency room with her, and the last time, she had a fever of 105, we mentioned to the
doctors the throwing up of the bile, how her tummy looked bloated, and how much she was
crying, and the fact that her breathing was becoming labored and shallow, that was January
17, 1998. Here was there diagnosis, the fever was caused by the persistent ear
infection, the breathing was our fault because we were smokers, so they gave her Alupent
and another antibiotic. She threw up all over the doctor, and I guess he thought a
young baby throwing up bile was not out of the ordinary, because he said nothing.
They cooled her with ice wraps, got her fever down to 102 and sent us on our
way home.
Later that evening, I noticed that Jessica
had not dirtied a diaper in over 3 days, and I had also realised that the last time she
had a wet diaper was 2 days, and as I watched her cry, she had no tears at all. I
undressed her to give her a bath, and what I saw, immediately brought tears to my eyes.
Her stomach was so bloated, that it looked ready to explode. And she had lost so much
weight, she looked like one of those kids in the 3rd world countries.
January 18, 1998. Boy I was not
prepared for that day's events.
I picked Jessica up out of her crib, and she
had no life in her at all, she was like a rag doll, she was barely breathing, she had no
color and parts of her were very cold, her stomach was even more swollen than the night
before. To top all of that off, her temp was over 105, and she was throwing up the bile
every 30 seconds, I was so terrified of what was happening to her. I knew at that
moment I was losing my precious baby. I sent my son to my neighbor's for help,
because I couldn't wake my husband up. My neighbor told me to call her kids doctor.
I don't usually like to call doctors I don't know, but at this point, what did I
have to lose? I had everything to gain, I had hoped so anyway.
The doctor, came to the house immediately, he
listened to everything I had to say, and then he felt her abdomen, checked her oxygen
level, and turned to me and said, "did any of those idiots happen to tell you she has
a very large mass in her abdomen"? I told him no, and asked him what that
meant, he told me he thought it was an enlarged kidney, now when I think of the events
that followed, I think he knew in his heart what it was, but didn't have the heart to tell
me.
We went to the ER with her, and he told the
staff there they were idiots and if this child dies, each one of them was responsible for
it. He ran blood tests, bone marrow biopsies, inserted a catheter into her bladder
to get a urine sample, all the while, I sat there in horror watching what was happening to
my precious baby girl. I was at the hospital alone, and it was the worse feeling you can
have, to know your child is dying and not know why.
When he finished his testing he told me I had
to get her to the children's hospital right away, that if we waited another 2 hours, she
would be gone. Oh how everything just went so fast and my world was in a whirlwind of
emotions. My husband finally got to the hospital, the neighbor had my four kids and
we were off to Montreal. If only I weren't so stupid and naive, maybe the next turn of
events would have been less of a shock.
When we got to the children's hospital, we
had a team of specialists waiting for her, and I am serious, I went to the reception
window, told them we were sent by the doctor, and as soon as I said her name, 6 medical
staff came flying out of the ER. WOW....I thought someting is definitely not right
for this to be happening.
The doctor came to us a while later, after
they got Jessica hooked up to the machines and meds going into her. The doctor told us she
was a hemotologist/oncologist. Now I am not the brightest crayon in the box, and did
not understand at all what she was or why she was there.
She looked at me, oh, I was so upset, I had
tears pouring out of my eyes, and I was holding the baby, and she asked me to please sit
down, I told her I prefer to stand, because Jessica likes it when I stand and rock her.
She said "Mrs. Deschambault" your daughter is very sick, and I need you
to be sitting down when I give you the news. It was then that I was told my precious
baby had Neuroblastoma. I got so upset with her for using a term I couldn't
undertand. I told her to speak in words I could understand. She told me Jessica had
Cancer. She was just 7 months old. I could not believe this was happening to
me, to us. I couldn't figure out why her.
When she was first admitted to the hospital
on Jan 18, she was there fighting to live her life, she had to fight the cancer too, and
the pain. She was in the hospital that time until March 3. During that time,
they got her started on the chemotherapy, and were feeding her through a feeding tube.
It was so scary to see her hooked up to so much stuff. I couldn't even see my
baby that good, so many wires, tubes, and I just didn't even want to hold her, I was
scared of all the stuff on her.
They had told us in within days that her
official diagnosis, was Neuroblastoma Stage IV, N-Myc Amplified. Meaning the tumor
was more aggressive than they thought. She was showing no response to the chemotherapy,
but then they changed her protocol to a more intense treatment. We were given 30%
chance of survival for odds.
Her course of treatments ran from Jan - Aug.
1st. She then underwent a Bone Marrow Transplant using her own healthy stem cells.
The Transplant was a bumpy ride. She
got so sick, she had sores in her mouth, her little bottom was so raw, and she couldn't
eat. But the child always managed a smile for you. She was a true miracle baby, she
was defying the odds, and the doctors were amazed!!.
Things took a turn for the worse when she was
6 days post transplant. Her white counts were supposed to be on the rise, but
they weren't getting any higher. Once again, Jessica was fighting to keep her life.
2 weeks time passed, she was in danger, and had become a candidate for the ICU. On
Aug. 25, the doctors told me that and I got so scared because I knew that once the kids,
go there, they don't come out. That was scheduled to happen on Aug. 26, one day
before my birthday.
On the evening of Aug. 25th, I was sitting in
the rocking chair, singing "Wind beneath my wings", and thinking all hope was
lost. When suddenly I felt a breeze of cold air, I remember looking down at Jess to
make sure she was covered up and she was looking upwards, and had the biggest, brightest
smile had on her face. When I looked up to see what had her smiling so brightly, I
saw a bright light, and in that light, I saw a figure. I put Jessica in her crib and
went out to the nurses station, I was going to tell them what happened, but I thought they
would call me crazy, I just told them I was going for a walk, they asked me if I was ok? I
said I didn't know.
The morning came, and before they sent
Jessica up to ICU they decided to check her cbc again, because they said she looked
brighter, and livelier that day. When they came back to me, they said they could not
explain it to me, but her white counts had climbed, and she was no longer in danger, and
no longer a candidate for ICU.
After that day, everything went smoothly for
us. She was released from the hospital in late October, and went through 3 weeks of
radiation therapy. She has been well since then, and she is going into year #3 of
remission.
At a routine check up 2 weeks ago, I
mentioned to Jessica's doctor how she would get severe nose bleeds for no reason and how
little scrapes and cuts seemed to bleed more than the bigger ones. And I told him
how she had filled a faceloth with blood just a few days before the appointment.
They did the blood work, and they just called me back with the results. She has
Acute Immune Thrombocytopenic Purpura. I have to take her to the hospital on Friday
for a bone marrow biopsy to make sure she does not have cancer again. I will have
the results of that on the same day, so they say.
The doctor also told me that this can be treated, and in cases such as Jessica's, about 85
percent of children recover within 1 year and the problem doesn't return. This all depends
on whether that biopsy comes back cancerous or not. If it is not her cancer
returning, then he said drugs that alter the immune system's attack on the platelet are
prescribed. (Whatever the heck that means).
Excuse me while I pick up from
yesterday. Jessica had her biopsy today, and NO CANCER cells were present in her
system. However, she does now have the Acute Immune Thrombocytopenic Purpura to deal
with.
She will now have to take Prednisone, which I just found out is a steroid. We will
also have to travel weekly to the hospital for tests, the hospital is 2 hours one way.
She will be monitored very closely for the
next 6 months, if there is no change, she moves up from Acute to Chronic, and will become
a candidate for spleen removal.
Immune Thrombocytopenic Purpura (ITP) is a
disorder of the blood. While the recovery rate is good, ITP does have the potential to
take a child's life.
Immune refers to the immune system's
involvement in this disorder. Antibodies, part of the body's immunologic defense against
infection, attach to blood platelet, cells that help stop bleeding, and cause their
destruction. Thrombocytopenia refers to decrease in blood platelet. Purpura refers to the
purplish- looking areas of the skin and mucous membranes (such as the lining of the mouth)
where bleeding has occurred as a result of decreased platelet.
Some cases of ITP are caused by drugs, and
others are associated with infection, pregnancy, or immune disorders such as systemic
lupus erythematosus. About half of all cases are classified as "idiopathic,"
meaning the cause is unknown. Jessica's case falls into the unknown cause.
For now, Jessica will be monitored on a
weekly basis, and given a platelet transfusion when necessary. I am to protect her in
every way possible, to limit her activites so she does not get injured and bleed, if she
has a bloody nose that I cannot control in a reasonable time, I have to get her to the ER.
Once again my Jessica will have to fight
something off, while the recovery rate is good, and I have heard some success stories, I
am still forging ahead with my idea for a prayer circle for her, because I believe in the
power of prayer, I have seen it work. And I feel the need to make sure she is
protected and covered as much as possible to ensure a complete recovery from the ITP.
I thank you for stopping by and letting me
share a piece of my baby's past with you, will you please take a moment to continue your
journey through the next few pages for Jessica?
Thank you Tigress for the encouraging words
for Jessica.
This award was presented to Jessica by Nancy
on July 9, 2001
This award is for outstanding sites that
truly light up the web |
