Rachael is in the top-middle of this picture.
When she was born she was 8lb. 13 oz. and 21" long
Last Update: Tuesday, October 20th, 1998 @ 8:56am
Kidney Update
Saturday, August 2 @ 4:55pm
We went to the University of Chicago Medical Centre Saturday
for a CT scan.
Rachael was very brave despite the IV and the insertion of a feeding tube up her nose
in order to get some awful tasting stuff (contrast) into her stomach. The liquid allowed
her
GI track to be seen in contrast to the kidneys. The scan gave the doctors a better
view of the tumor that may have been growing on her kidney since conception.
The doctors believe that this may be what is known as "Wilm's Tumor" which has
always
been known to be cancerous. It also appears to be in Phase I which is the most contained.
The tumor seems to be in the upper middle of the kidney which would require that the
kidney
be removed. Survival rates for this procedure during Phase I are better than 95%.
I'm not sure which was giving the most trouble: The HMO or the Hospital.
The HMO would only allow a referral for the CT scan and would not allow admission until
after the results are viewed by a doctor. The hospital wouldn't allow an outpatient CT
scan until Tuesday and wanted Rachael to be admitted before they would do the CT scan.
The saying goes: "Don't let the sun go down on a Wilm's"
Whenever a tumor of this kind is discovered you don't wait for schedules.
The doctors at North Suburban Clinic were very helpful in getting us seen ASAP
We ended up going in to the Emergency Room to await a CT scan--bypassing the need to be
admitted.
The surgery has not yet been scheduled. The doctor plans to remove the right kidney,
right adrenal gland, and appendix while she's in the area. Recovery time is usually
4 to 5 days. With only one kidney Rachael will need to stay out of full contact sports
like football :(
There will be a rather large scar that will run from just above her belly button to her
side.
I (David) will be staying with Rachael through the night. Renee will be going back home
each night. Only one parent is allowed in the room for the night. Renee's sister,
Michelle,
has been staying with us and watching Amber for us.
Monday, August 4 @ 8:55
They have sent samples of the tumor to the lab to check the
pathology of the cancer. We will get the results back on Wednesday. Here's what we know
now...
They're 99% sure it is a Wilm's tumor. They have changed the status from Stage I to Stage
II due to complications during surgery. When removing the kidney the top of the tumor
cracked open which spilled cancer cells into her abdomen. They washed her out with saline
and suctioned her out during surgery. The spillage means that they will require that she
be on chemo-therapy for a longer time (which should kill any cancer cells that may have
spread through her system). This also means that there is a greater possibility that the
cancer could spread to other areas like her lungs or brain. She lost very little blood and
did not require a transfusion.
Rachael is back with us in her room after 3 hours in surgery
which started at 2:15pm. She has an oxygen line and stomach pump tube in her nose, a
catheter for urine, a saline solution IV, and a heart/lung monitor for me to look at as I
sit her with her.
I went down to the OR Recovery room and sat with her until
she was able to be moved to her room in the Children's hospital. While I was holding her
hand she opened her eyes and smiled at me. I told her that they were all done and she fell
back asleep. She woke up again 15 minutes later when the blood pressure gauge started
squeezing her arm. She said, "Yeah" when I asked her if she wanted to see mama.
Tuesday, August 5 @ 11:51pm
No word yet on the lab work.
That was a rough night. She slept peacefully until 3am. The
nurses take the vital signs every three hours so she had to grab as much sleep between
prodding's as she could get. I held her hand from 3am to 6am (both of us falling asleep
between jolts--I'll explain in a minute). Rachael doesn't like getting her blood pressure
taken but is getting used to it. She has only said a few words all day. Mostly
"no", one "yes", when asked if she wanted to see a movie she said
"Cinderella". She isn't very vocal about pain; but, the look on her face and her
behavior is usually enough to clue us in. Between 3 and 6am she slept fitfully. Every 90
seconds she would jolt herself awake. I asked her what she was dreaming and she said,
"I fell" (I wasn't expecting an answer). For the most part she just keeps quiet.
She had 1mg of morpheme at 6am and the nurses have been giving her about 1mg every 3
hours.
Renee's been getting to the hospital at about 8am with
William in tow. He's in another growth spurt and has been eating about every hour. The
nice thing about it is that he tends to sleep through the night (about 7 hours) before
expecting breakfast. Renee's going to spend the night with Rachael and William so that I
can give my aching back a rest. The chairs fold out to a hide-a-bed which has bars in all
the wrong places. I've got a killer back-ache.
They removed the catheter at noon today and we were able to put a diaper back on her. The
allowed visitors so I was surprised when I came back from lunch and found that they had
moved us to a new (and bigger) room which was now filled with visitors. Renee's Aunt the
missionary from Chile, Renee's parents, sister, one nephew, one niece, and Amber
(Rachael's sister). There's a nice(er) bed in the adjoining suite which Renee can sleep on
(lucky duck) and a shower. I've been washing my hair in the sink (no I don't have to take
it off first!).
Renee just called and told me that after they had adjusted
Rachael's morpheme (1.2mg over a half an hour) and that she seems much more
comfortable. She's purked up and is talking now. I just wish they allowed both parents to
stay the night.
I'm hoping to get to the hospital at about 8:30 tomorrow. They should be getting the lab
results to us around noon.
Wednesday, August 6, 1997 @ 11:12pm
The preliminary lab results were viewed as "Favorable
Histology" which means that the cancer is less likely to grow back or spread. We will
know for certain after all 14 slides have been analyzed. They should be finished looking
at the slides by noon on Thursday. They have confirmed that it is Willm's tumor and it is
cancerous. More on what that means tomorrow (after I learn more about it).
Today Rachael got out of bed and visited the Toy's -R- Us
playland in the basement of Wyler's Children's hospital. Wyler's was in the news today.
Evidentially some gang member shot at another guy and missed and hit a child who is now in
Wyler's. Rachael played for about an hour, walking all over the place. She about gave me a
heart attack with each move she made. She would drop something and try to pick it up and
stop and hold her abdomen. She wanted to take some dinosaurs back to the room to play with
but they didn't want her to. When we got back to the room we watched "Snow
White" and the Doctor's visited to give us the preliminary word on the pathology of
the tumor. Rachael's not had a thing to eat since Sunday noon. Nothing to drink since
Monday morning at 3am. She asked for a cookie this morning and said that she was hungry at
night. She has a very large canker sore on her tongue. She slept for 3 hours and then went
back down the playland. She was walking much better this time and we played for about 2
hours until they closed up for the night. They did let her take some potato heads which we
played with till I had to go. When I got up to leave Rachael pouted and said
"Daddy!"--I played with her for a while longer.
Thursday, August 7, 1997 @ 8:01pm
We got the final lab results this afternoon: Favorable
Histology. The favorable part is that there are better percentages of complete
recovery in Stage II (in the 90%) where unfavorable is much lower. They did find cancerous
cells in the outer cell wall of the kidney which would have put her into Stage II even if
the tumor had not broken open during surgery. She will have 18 weeks of chemo which will
require injections once a week for 10 weeks Rachael has a central-line which allows her to
be given an injection without having to poke her each time. She will start chemo-therapy
this weekend and will be able to come home. The two medicines that she will be given once
a week for 10 weeks: Dactinomycin and Vincristine. Nausea is the most common
side affect.
Rachael got her NG tube (stomach pump) taken out this
morning. At noon she had a liquid lunch. She's getting around to the point that I
don't have to help her stand or pick things up for her. I do help her down from the bed.
She has scared me so many times today that my chest is hurting--the adrenaline surge--the
jolts, whew… She took a walk around the hall, played Nintendo64 (kind of), painted,
cooked her plastic food and served it to Renee and I.
Amber is here to help make things interesting. They played,
watched movies, and fought just like they always do. As I'm typing this they are watching
The Hunchback. I fast forwarded the part where Quasimodo's mother is killed--amazing that
Disney showed that.
The news about Rachael is slowing to a trickle. I will most
likely not update this page until sometime this weekend.
Friday, August 8, 1997 @ 10:00am
Well, I guess I will update this page before the weekend…I
was so surprised by the news I wanted to put it on the page right away. We may be going
home today! Rachael is taking a bath now and they removed her IV. She hasn't
had any morpheme since yesterday noon, only Tylenol. There's so much to adjust to. To a
certain extent we will have to watch out for her but we shouldn't isolate her or treat her
much differently. It will be a hard thing to control.
Friday, September 12, 1997 @ 10:58am
It's been a while since the last time I updated this page.
Here's an update.
It's hard to know exactly how bad Rachael feels; but, usually
two to three days after the chemo shots she feels rather crummy.. Every Monday she gets a
Vincristine chemo shot which is the milder of the two shots. This Monday she will also get
an Actinomycin D shot. She started losing her hair three weeks ago with the first
Actinomycin D shot. She still has hair but it is very thin. I'm guessing that after this
next shot there wont be any left. We'll be buying her some cool looking hats. She
is much more touchy about the food she eats and we cater to her whims regarding this so
that she keeps the food down. Amber seems to understand that Rachael is sick and needs
special attention; but, Rachael seems to get rather jelous of the time that Renee needs to
spend with William.
It is very hard to see your young daughter go through
something like this. Sometime earlier this year I was saying to Renee that I was rather
content. We were all healthy. We were going to be able to pay taxes. My computer had
enough hard drive space.... Life was good. Murphy usually gets the last laugh...
Let me make this point (because it's my web page I can say
what I want). God shares our grief. He does not cause it. God gave us Life. If we
know Him then we can have MORE life (life more abundant). LIFE HAPPENS! All we can do is
deal with it. Don't turn your back on God. I believe that God does heal--if it is part of
his plan. All I can say is that "All things work together for Good for those that
Love God." Whatever happens we WILL be there for Rachael and will help her through
the times ahead. I thank God for Rachael.
Wednesday, November 19, 1997 @ 9:49pm
Rachael has one more chemo shot left on December 8th. Her
hair started to grow back after she stopped receiving chemo shots each Monday--now she
gets them every three weeks and even that is almost over. On Nov 17th we went to Wyler's
Children's Hospital to get another chemo shot, blood work, and an ultrasound of her
abdomin. The ultrasound went well. Everything looked fine there. The Make a Wish
foundation is sending us to Disney World sometime next year for 5 days. We've never been
on a real family vacation. We usually just visit family. The kids will love it.
Tuesday, January 27th, 1998 @ 8:56am
Rachael's tube was removed Friday, Jan 23rd at about 8am. She
misses it. We told her that they would send it in the mail and she could have it again.
They said that quite a few people ask for the tube as a keep-sake. Rachael's hair is
growing quite nicely. He color is very good. Yesterday she had Renee give me a call at
work to tell me that she wanted her "special tube" back.
Tuesday, October 20th, 1998
Rachael continues to have good check-ups. We go to U of C
every three months. The doctors are continuing to watch an area in her lungs which they
noticed on June 29th. The next day we went back in for a CT scan of her chest and abdomin.
I had the day off already because Renee and I were going to spend the day together on our
8th Anniversary. The "Artifact" was determined to be some sort of vascular
tissue (veins) that for some reason are showing up on the X-Rays. They continue to monitor
it and compare all the prior X-Rays with the new ones.
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