The Story May 2000 – July 2000
(more recent items are at the bottom)
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Through 5/12/00:
Our daughter, Alyssa, just turned 3 on
April 24th. When she went in for her 3yr well child checkup, the Pediatrician
noticed some lumps in her belly. The Doctor said it might be constipation. The
she gave her some medicine for constipation. It worked just as it was supposed
to, so we thought everything was OK. About a week later when our older
daughter, Chelsea, got sick, as a convenience my wife and both daughters went
to the Doctor. After the Doctor was done with Chelsea, she asked to feel
Alyssa's belly again. She still felt something and asked that we go in for
X-rays and an ultrasound. A week later when we had the X-ray, the Doctor told
us she had to go into the hospital right away. They had found a
"mass" in her abdomen. That was Friday, May 5th.
After a series of tests, the Doctors at U of M Children's Hospital diagnosed her with - GanglioNeuroBlastoma (a form of abdominal cancer). Each day it seemed we were getting worse and worse news. However, more of the test results began coming back and things were not as bad as they originally thought. It's still pretty serious, but not as bad as it could be. The Doctor's have said that the tumor was so large, they were surprised she didn't exhibit any symptoms. The tumor had pushed all of her abdominal organs out of the way and was ready to begin pinching several vital blood vessels, nerves, etc. We are very lucky that her Pediatrician found it when she did.
Her treatment plan (at this point) will consist of 12 weeks of Chemotherapy and at some point, surgery to remove the remaining portion of the tumor. She has already had her first round of Chemo on 5/12 (Fri, Sat, & Sun). She handled it very well (mentally and physically). The Doctors sent us home on Monday. Within 30 seconds of being home, she ran out the back door yelling, "I'm going to Lydia's house!" She was playing on the swings for the rest of the night. If everything goes well, she will go back every 3 weeks for another round of Chemo for a total of 4 rounds. Unfortunately, because Chemo also attacks the immune system, some complications are almost guaranteed. So, she'll probably end up back in the hospital at some point along the way fighting a normally mild infection. One of the most well known side effects of Chemotherapy is hair loss. The Doctors have told us that this will happen roughly a week or two after her first treatment. About halfway through her Chemo, the tumor will probably be reduced as much as it ever will be and the Doctors will go in and remove what is left.
We have been really pleased with the entire staff at U of M from the lead Doctors to the Janitorial staff. EVERYONE really tries to make the kids as happy as they can given where the are. They really know how to treat her and make it as pleasant as possible.
05/19/2000:
Alyssa has been back to the
Hospital three days this week for additional tests. She is continuing to handle
everything very well. To look at her, you would never know that anything is
wrong. She is still very active and has a great attitude. We are pretty sure
that her belly is becoming softer. We hope that this is an indication that the
Chemo is working and the tumor is reducing.
5/21/2000:
Alyssa continues to handle things very well. You still would not know that
there's anything wrong with her by looking at her. She has her happy times and
some crabby times like any normal three year old. The crabby times, I think,
have mostly been due to not taking afternoon naps like she used to. Her MIBG
test results have come back. Like all the other tests, it shows the tumor only
in her abdomen - nowhere else. This is very good news. Her most recent blood
test results indicate that her counts have dropped a little, but are still near
normal. This is good because as her counts drop, she will be more susceptible
to infections and if they drop too low, the Doctors may want to perform a
transfusion - something pretty common for Chemo patients.
5/21/2000 Part 2:
Alyssa is back in the Hospital. What a difference a couple of hours can make!
She woke up from a early evening nap with a 102 degree temperature. When the
Doctors sent us home, they said to call when she has a temperature of 102 or
higher. So we called and they wanted her to come in. They tested her blood and
her counts had fallen very low. They want to keep her in the Hospital while she
fights whatever is causing her fever. She'll probably be in until at least Wed
or Thu.
5/23/2000:
Alyssa is home from the Hospital. She went in Sunday night because she had a
fever. By 1Am Monday morning her fever was gone, but they still wanted to be
cautious. They pumped her full of powerful IV antibiotics and tested &
monitored her blood. They watched her blood samples for 36 hours to see if any
germs/bugs were going to start growing (sign of an infection). Nothing grew and
since her fever stayed away they let us come home today (Tues). But since her
counts were still very low, she will need to stay on her IV drugs until her
counts go back up. Yuck, that means we have to give her IV drugs at home. We
never wanted to know this much! But at least she's still doing well.
We got a little more good news today. After the U of M Hospital Staff that is
treating her (the whole Cancer Department basically) has made their diagnosis
and decided on a treatment protocol, they send their conclusions and plans to
the National Council for review. The National Council reviewed everything and
agreed with everything the U of M team concluded.
We had a tour of the Cancer Clinic where she will be getting her future Chemo
treatments. The place is basically a really big play/craft area with a little
medical equipment. They will hook her up to the IV in the morning and then she
can play, watch movies, do crafts, etc, until the drugs are done. Usually this
is an all day deal, but hopefully she won't have to spend the night. Her second
Chemo (first time at the clinic) will be in about a week. Thanks again for your
continued support!
5/27/2000:
Alyssa's blood counts were tested again on Thursday. The results showed that
her counts are going back up, but they are not back to an acceptable level yet.
So unfortunately, she has to continue with the IV antibiotics for at least
several more days. Denise has really gotten the hang of setting up the IV and
giving her drugs. Before this is done, Denise will be pretty close to an
honorary Nursing Degree. Alyssa is still acting very normal - good attitude
most of the time with some tantrums thrown in here and there - normal for a 3
yr old.
5/30/2000:
The tremendous out-pouring of support from family and friends has really been
helpful and greatly appreciated. But it's starting to have a minor
"spoiling" effect on Alyssa. For the past couple of weeks, a lot of
people have been visiting Alyssa either at the hospital or at home. Most times
the visitors bring a card, flowers, or a gift of some sort. She doesn't really
understand that she's sick and that's why people are bring gifts, she just
knows that people have always been bringing gifts. After all, she did
just have a birthday! Well, I think she has come to expect gifts from every
visit. When Grandma and Grandpa Swanson come over for dinner on Memorial Day,
Alyssa ran from the backyard yelling "Grandma, Grandpa!" in her usual
delight at seeing her grandparents. Unfortunately, the next thing she said was
"did you bring me presents?". --- Everyone cracked up.
On a more serious note, Alyssa is still handling things very. Her hair has
started falling out. In a couple more days, it'll probably all be gone.
5/31/2000:
Good news! Alyssa's latest blood test results came back and her counts have
come back up to (barely) acceptable levels. That means she doesn't have to have
the at-home IV antibiotics. Her second Chemo treatment is schedule for the
morning of June 5th. It should be an out-patient procedure and should be home
for dinner.
6/5/2000:
Today was supposed to be Alyssa's 2nd Chemo treatment. Denise took her to her
8:30AM appointment at the U of M Cancer Clinic. They drew blood for a blood
test and the Doctor examined her. The Doctor seemed to indicate that she was
during OK and things looked about as expected. Unfortunately, when the Doctor
was finishing the exam, the blood test results came back. Her counts were still
not up to a level where they feel good about giving a Chemo treatment. Since
Chemo reduces blood counts, they like to have the counts as high as they can
before they give another treatment. So, they skipped the Chemo for this week
and made another appointment for next Monday. Other than that things are going
well. Alyssa still seems to feel pretty normal and is playing like usual.
6/11/2000:
All is still well. Tomorrow morning we'll try again for Alyssa's 2nd Chemo
treatment.
6/12/2000:
Alyssa had her 2nd Chemo treatment today. She had to be there at 8AM. They ran
some blood tests first thing, but the Chemo didn't start until about noon. But
at least she got the treatment this time. She handled the treatment very well.
Denise said that Alyssa was the entertainment for the day at the Clinic. They
got home about 6:30PM and Alyssa was asleep in the truck. We have to wake her
around 8PM to give her an anti-nausea drug. Other than that, there's not much
to report.
6/15/2000:
Alyssa has a runny nose. We’re crossing
our fingers and hoping this doesn’t turn into another hospital trip.
6/18/2000:
Alyssa has come pretty close to going to the hospital today. The Doctor wants to see her if her
temperature gets to 101. Here temp has
been as high as 100.8 around nap time. Her temp has since come down to around
99.3. Denise is packed and ready just
in case.
The Doctors updated us on her treatment plan.
We have always thought that she would most likely have surgery about
halfway through Chemo to have her tumor removed. They told us today that she won’t have surgery until her Chemo is
complete (around late summer hopefully).
This isn’t really good or bad news; we were just disappointed that we
had the wrong understanding of her treatment plan.
6/19/2000:
Alyssa’s fever broke. She still has a
runny nose and cough, but her temp is back to normal. The threat of another hospital stay has gone, at least for now. Wheh!
On a different note, she seem to be developing quite an attachment to one of
the receiving blankets we ‘borrowed’ from the hospital during our last
visit. Very often she asks, ‘Where is
my blanket? You know, the one we took from the hospital.” I guess we’re not doing such a great of
teaching the proper values. Oh well…
6/27/2000:
We had a close call on Friday. Alyssa
has had a bit of what we thought was a rash on her chest around her Broviac IV
port. It started small on her left
side, but had started to spread early last week. By Thursday it was all over her chest and was really bugging her
– it was pretty itchy. We still thought
it was some sort of rash due to the bandages, sweat, or both. However, we weren’t positive and called the
Hospital anyway. The Docs said that it
might be nothing serious but that it could also be something like Shingles – a
potentially serious condition when you are undergoing Chemo. So, they wanted us to come in and let them
have a look at it. We got to the
Hospital around 10PM and the Docs saw us about 10:45. Luckily, by Midnight we were on our way home. They said it wasn’t Shingles or anything
else to worry about and that it was some sort of rash. When we asked if there was anything we could
do for it, they said the best thing would be to do nothing and that it would
‘just go away’. This was not exactly
the answer we were looking for. Since
then, we’ve been changing her bandage often and giving her Benadryl for the
itching. It has gotten somewhat better,
but it still bothers her now and then – after all she had this patch of skin
covered with bandages and tape for two months!
On a different note, her latest blood tests have shown that her blood counts
are coming back up – Great News!
Alyssa still has a great attitude. Her
hair is getting pretty thin, but more than half is still there. We’re amazed! Her 3rd Chemo is scheduled for July 5th.
7/8/2000:
Alyssa is done with her third round of Chemo.
One more to go. This Chemo
treatment was spread across three days.
She went in for about 6 hours on Wed and then a couple on Thu and
Fri. Chelsea went with her on Thu and
Fri. They both enjoyed that, but I
think Chelsea enjoyed it more. Chelsea
loves and Arts & Crafts. She must
have thought she was in Heaven when she say all the activities they have
planned at the Chemo Clinic. Denise
basically had to drag Chelsea out of there while she was begging, “oh, please
just one more project”. Alyssa is doing
OK, but this treatment seems to have affected her more than the others. She’s been pretty crabby and her hair is
really thin. I’d say there is less than
¼ of it left. All in all, she’s still
doing very well.
7/19/2000:
Alyssa had another trip back to the hospital.
On Saturday she had a fever of around 101 so the Doctors wanted her to
come in. They pumped her full of
antibiotics like last time and wanted her to stay there for a while. She was able to come home Monday night. She’s still feeling pretty good all things
considered and her spirits are high.
7/30/2000:
I haven’t been updating the site very often lately. There hasn’t been (knock on wood) very much to report. That’s good news! We got her blood counts back earlier this week and they were as
high as they have been since she started Chemo. Also good news! Alyssa’s
going in for her 4th (and hopefully final) Chemo treatment
tomorrow. This one will be 6 hours on
Mon, and then 2 more on Tue and Wed.
Here hair is getting very thin these days and she’s getting very
impatient. She wants her hair gone so
she can show her friends!
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Last Updated: 8/15/00