June Archive

4-12-03 - We had a meeting with Beth's chemo doctor and learned that there is not a
tumor as one would normally think of it. We were told that there are nerves at the
base of the spine near the tail bone that are "coated" with tumor cells. The doctor said
that she is very shocked that it would come back this fast...especially since we finished
radiation recently which is the big gun to kill the stuff off. Beth was very brave and had
a spinal tap and also a bone marrow aspiration from her hip. Not very pleasant things
to go through.......trust me....I was there! Beth has been moved to the high risk
catagory with not alot of hope from the doctor. An online doctor friend of mine (whose
child also has medulloblastoma) hooked us up with a renowned oncologist from St.
Judes hospital in TN. I spoke to him today on the phone and he told us that he would
like to review Beth's MRI films, both pre and post radiation. He says that sometimes
MRI results are read wrong and that suspect areas can actually be natural changes
caused by radiation. Were not getting our hopes up but will be scrambling to get them
as soon as possible on Monday for his review and second opinion. At this point Beth
will start her heavy chemotherapy earlier........this Tuesday to be exact. Instead of the
standard risk regimen (cisplatin, vincristine and ccnu) she will be receiving a drug
called VP-16 and also the cisplatin every four weeks instead of every six weeks. Keep
praying! I think God may be Beth's only hope.

4-17-03 - Praise God! Dr. Gajjar from St. Judes Hospital in TN just called me. He was
very matter of fact that what was seen on the MRI is normal and that it is NOT
recurrance. He stated that is was just as he thought it might be from the synopsis I gave
him. The MRI was "over read". He and his team at St. Jude reviewed it and all agreed
that there is no tumor activity in the spine. This would make total sense in light of the
fact that the spinal fluid which was just checked showed that it was free of any floating
tumor cells. He said that our doctor would have to call him for reasons of propriety and
that he would consult with our doctor reference what they are seeing on the MRI. This
is the news that we have been praying for. Of course......we will be getting a third
opinion as well but look forward to the correspondance between the two doctors. The
next consideration is whether or not Bethy should be moved back down to standard risk
protocol. Gotta go. I'm on my way to the hospital to pick up Bethy and Jenni. Keep
praying that the second opinion is the correct one and rejoice for the new hope!

4-24-03 - Our doctor did speak with Dr. Gajjar from St. Judes yesterday morning. Our
doctor still wants to keep Beth at the high risk protocol for three months until the next
set of MRI scans are done and then re-evaluate. Although our doctor is still not saying
that it is not a recurrance, she has elluded to the fact that the MRI was possibly over
read and is playing neutral because she respects the opinions of both St. Judes and the
radiologist at Childrens Hospital. We are waiting to speak with Dr. Gajjar again before
deciding whether or not to get a third opinion. He will be calling us tomorrow. Beth is
doing fine and feeling fine...a little tired sometimes. The nausea is under control and
she really only needs Zofran for a few days after chemo (cisplatin & VP-16) treatment.
Blood cell counts are now becoming very important, as the cisplatin attacks the bone
marrow (Immune system) at the same time it fights cancer cells. Beth will be getting
blood drawn to check her counts twice a week. Our doctor wrote a prescription
allowing us to get the counts checked at a local lab to save us the drive to Detroit!
Beth is looking forward to going back to school as long as her counts permit it. Beth
and Mikey are over at her friend Sammy's house playing. She just called and said she
and Mikey want to stay over there for dinner. Hmmmm........whatever will Jenni and I
do ;)

4-27-03 - We have been working really hard trying to find the best doctor for a third
opinion. We finally chose Dr. Roger Packer from National Childrens Hospital in
Washington, DC. He is the doctor who actually invented the chemotherapy protocol
Bethany was supposed to be on for low risk medulloblastoma. Dr. Packer returned our
email this morning and told us he would review Bethany's MRI films so it's off to Detroit
tomorrow to pick up another set of MRI films and ship them overnight to DC. A great
doctor (neuro-oncologist) from Childrens Hospital of Pittsburg (who is a friend of a
friend) was briefed on the whole situtation but didn't see the MRI films. Even without
seeing them he said that he would have to agree with the St. Judes doctor that any
enhancement seen has got to be radiation changes and not recurrence. Beth is really
doing well. She had her blood counts checked today and will twice every week. Her
counts were fine and she will be going to school tomorrow. She is glad to be going
back. She has lost a few teeth recently. All were baby teeth with new ones coming in
underneath. Jen and I were concerned at first thinking that maybe it was a side effect
of radiation or something but that doesn't seem to be the case. I will update when we
learn and hear more. Keep those prayers coming!

5-1-03 - Had to order another set of MRI scans......they will finally be ready tomorrow.
$550...yeeeesh! Oh well.......waddaya gonna do? So...I will get them sent out tomorrow
to DC and will hopefully hear something early next week from Dr. Packer. Another trip to
the lab for a blood draw and count check Thursday morning and then it's off to school. A
really neat "sign" was given to Bethany last week that I completely forgot to post. Jenni
and Bethany went to the mall and parked. Both got out at the same time and Jenni heard
Bethany say "Mom...come here quick!" Jenni hurried around the back of her Jeep and
saw Bethany pointing at the car parked on the passengers side of our own. The car was
very dirty and written with a finger on the drivers door of this car facing our car was "Beth
S". I immediatly went into cop mode and asked Jenni if she checked Bethany's fingertips
for dirt. She said that there was absolutely no time for Beth to have written that herself
because Beth called out before she (Jenni) even had her door shut. I had been praying
that God would let Bethany know that he is with her......and then this. If you sat down and
figured out all the factors and odds.......it would blow up your calculator! These are NO
coincidences my friends. NO WAY!

5-6-03 - The third opinion is in!!!! The doc in DC sent us an email yesterday. He is a man
of few words. The email simply said "We see no evidence of dissemination". That's it!
But it's all I needed to hear. Such great news! We have a phone conference with
Bethany's Oncologist set for Thursday and will demand that Bethany be returned to the
standard risk protocol which will lower the amount of cisplatin she will receive. It will
also mean that she will receive some different chemo drugs as well. Thank you so much
for all the prayers and emails of hope and encouragement. We will post Thursday
sometime after we have spoken to Beth's doctor! Woooo Hoooo!!!!!!!!!!!!!!

5-7-03 - In the post on 5-1 I had mentioned that we had paid $550 for MRI copies. I had been
instructed to bring cash while speaking with a file room representative on the phone. Well
this lady from the file room had the pack of x-rays in her hand and led me down to the first
floor, back into a deserted area and into a little room where she says "sign here" and then
requested the $550 cash. I was in such a hurry to make the afternoon Airborne Express
shipping deadline that I blindly signed, gave the cash and then bolted down to shipping
and receiving. On my way home I'm looking at the piece of paper that I signed. Nowhere
did it say I actually paid the money and on the bottom it said "check or money order only".
Hmmmmm....I got this sick feeling in the pit of my stomach that the money never made it to
the hospital. Jenni contacted the guy who is in charge of the MRI dept. and explained what
had happened. He was VERY upset and stated that they dont take cash and that he never
saw the cash come across his desk nor a receipt anywhere near that amount. Well.....we
got a call back from him this afternoon....it seems there were some job terminations in the
file room! He faxed us a letter that we are to present to the file room clerk for free MRI
copies from this day forward! I hate crooks!

Bethany is doing ok and eating pretty well. Mikey is driving her crazy. I was spying on
Mikey (which often gives me a belly laugh) while Bethany was in her room with the door
closed. Mikey was doing the old "knock and run" and having so much fun with it. Bethany
was a pretty good sport and yelled only a couple of times. Bethany's blood white counts
were down as of a check on Monday which puts her at risk for infection. So...she hasn't
been in school this week. We go for another check tomorrow (Thursday) to see if it is
getting better. We hope so because we were planning a little birthday party for Mikey at a
cool kids place in the mall cuz he is turning four on 5-11 and Bethy really wants to be there.
We will post pone if necessary. The phone rang today. I looked at the caller ID which said
"Holly Schools". I answered and a deep male voice asked "Mike?". I said "yes". The reply
was "Hi....Jonathan Rand!" It seems he was in the area and stopped in at Bethany's class to
give her a visit but she wasn't there because of her counts. So we chatted and then he
asked to speak to Bethany. I gave her the cordless and...of course....listened in on another
phone. She said "Hello?" and he said "Hi Bethany.....Jonathan Rand". Beth said
"Cooooooool" and they chatted for a bit. Chris, you are an awesome person and friend to
our family! It made Beth's day.......AGAIN! I don't have the words to describe how I feel
when my little girl is happy......Thank You. We will take you up on your offer this summer
to spend a day at your place....Beth will love that! As for our doctor.....we will have the
phone conference with her tomorrow reference dropping Bethany back down to the
standard protocol. I will post again tomorrow evening and let everyone know how that
went! See ya.

5-8-03 - We just got off the phone with our doctor. We let her do the talking to see what her
perspective was on dropping Bethany to the standard risk chemotherapy. She stated that
in light of the three other well respected opinions that she must consider the fact that the
MRI could have been over read by our radiologist and agreed that Beth will go back to the
standard risk protocol of cisplatin, ccnu & vincristine next week. Our radiologist was
questioned again of his opinion & was advised the other opinions did not agree with his,
but he is sticking to his guns that he believes it to be recurrence and that changes from
radiation is not likely because it is too soon to see changes from radiation. Our doctor also
commented that the other opinions we received had only seen the films and not the
patient. Bethany had some leg pain which our doctor felt was consistent with spinal
recurrence (were hoping it was just from one of the chemicals, vicristine, as her leg pain
has ceased now). Our doctor did not back down and say she agreed with the opinions of
the other doctors but I have to believe that if she was absolutely sure in her mind that it
was indeed a spinal recurrence that she would have fought us about going down to the
standard protocol. I guess that when your in the medical profession and a bunch of other
doctors have the exact opposite opinion of your own...it would make you look questionable
to change your mind and agree with them. Guess its better to have a MRI over read than
under read (except for the mental anguish!) So there ya go! We feel confident in the
opinion of the other doctors! Many of you have asked why we don't just change
doctors...honestly, we do like her bed side manner and she does take a lot of time with
Bethany and she has to trust what her radiologist's tell her. There are not very many
pediatric neuro-oncologists around...she is the only one who specializes on children's brain
tumors at Children's Hospital. Changing hospitals would not be the answer, either, as we
have a "team" of doctors (known as the 'Tumor Board'-radiologist, neurosurgeon,
oncologist, etc) who all work together. The oncology part is just that...a part of Beth's
treatment. We feel Beth is getting the best of both worlds-she can get treated an hour
away and our doctor apparently will consider the opinions of other doctors. We will
contiue to keep the doctor at St Judes as a consultant...he is really awesome. Beth's
attitude has really improved...appetite is improving as well as energy level.

5-16-03 - No chemo this week. Beth's counts were only at about 500 (fine for going out and
about) and they need to be at 1000 to get the chemo. So it's postponed for a week. Beth
is kind of happy and sad at the same time because she says part of her is glad she doesn't
have to get the chemo but the other part wants it so it is over with sooner. Oh well...she
want's to go to the Old Country Buffet tonight for dinner. Beth has been eating so well
lately and has even gained a few pounds! Beth is going with her class to the Henry Ford
museum on Monday. I will follow the bus so we have a ride out of there if she gets tired
or wants to leave early. Other than this....no other real news. It feels so nice to say that!

5-24-03 - Beth had the first and most difficult part of the second round of chemotherapy.
She was admitted to a room on Wednesday after sitting for six hours. This was very trying
for both Jenni and Bethany. The good news is that Beth's roommate was another 10 yr. old
girl from Highland named Mariah. They got along well but Beth is never happy to be at the
hospital so she is never talkative with other children while there. Beth received her first
standard risk dose of chemo which included Cisplatin, Vincristine and CCNU. She never got
sick but her stomach did bother her for a little while on Thursday evening. Beth ate well on
Friday afternoon / evening which is great. She will go back to receive and outpatient
injection of Vincristine on Wednesdays for the next two weeks followed by a three week
break before we repeat it all again six more times. Beth went to school for a baby shower
for one of the teachers today. We stayed for the entire thing which went for about an hour.
It kind of hurt my heart to see all of Beth's old friends standing around with their arms
around another friend that would have been Beth had cancer not entered her life. Also
standing back to watch was difficult as many of her old friends sat at a table together eating
cake and Beth sat at another table alone. It's like she was left behind because she can't
move on with her life in a normal fashion........not yet! Bethany seemed kind of oblivious to
it all but I couldn't wait to get the heck out of there and into the more controlled and
unconditional environement of home.

5-30-03 - Beth was had her outpatient dose of Vincristine on Wednesday. We found out that
our insurance doesn't cover the monthly breathing treatment which replaced the antibiotic
(bactrim) so Jenni is on the warpath with the insurance company writing an appeal to get it
covered....I just love her tenacity! Beth is doing well but we are watching the constipation
issue closely because she has been complaining of stomach pain every morning since the
vincristine....don't want a repeat of last time. She complained of an ear ache today....so off to
the local doctor we went. They prescribed ear drops and a decongestant. Does it ever stop?
The next set of MRI scans are set for early July. We are anxiously dreading it.....does that
make sense? Everything is in God's hands. I trust him with the wellbeing of our girl.
Somedays it's easier than others in that respect....but then again I'm only human! Everything
is going well for Jen and I at work. Just trying to stay focused day to day is trying but we
manage to pull it off I guess. Jen and I went to Red Lobster (yes alone) to celebrate our 13
wedding anniversary. Man was it nice to be able to concentrate on each other for a few
hours with no kids around. We missed them like crazy though. And that's the news! A few
more pics were added as well.

6-6-03 - Beth has completed chemotherapy round two of six! Now she gets three weeks off
the crazy stuff. As long as she takes her medicine (Zofran) she doesn't get sick. Beth has
lost her eyelashes and eyebrows but doesn't seem fazed in the least about it. No hospitals
for three weeks....unless her counts go low and she needs a transfusion. The doctor said her
hemoglobin was borderline on Wednesday. Beth gets her blood checked again next
Wednesday locally. If her hemoglobin is to low then she will have to go in. Lets hope she
doesn't have to. Beth is doing very well and went to her schools "field day" today. Thats
where the whole school goes outside and competes in fun but physical games. They held it
on the high school soccer field. What a great day. The sun was shining and it was very
warm. Beth sat on the sidelines and watched but was very happy to be there. Two of our
best friends / neighbors, Jackie and Jan, encouraged Beth to go and took her. Jackie even
treated us to Wendys for lunch! Mikey and I came later in the morning and hung out. Mikey
ran around like a maniac....but what better place for it?! We finally met a long distance
Internet friend, Sandy! She came all the way from California to see some relatives and fit us
into her schedule. Her granddaughter also has medulloblastoma which is how we began
speaking via email (please pray for Jordan also). At least some wonderful friends have
been made during this terrible circumstance. Beth is really getting back to being her "old
self" again....although she gave me a bunch of crap about taking medicine earlier this
evening. You know she's feeling good when she wants to play the claw machine at the
grocery store......she got two stuffed animals all on her own......truely an amazing feat with
those rip off machines!

6-12-03 - Bethany and I did spend the day in the hospital on Tuesday where she received
a blood/hemoglobin and platelet transfusion. It's amazing how her color came back
afterwards. Her white cell counts are also low so we have to keep her home for a few
days until they come back up. Bethany was a bit on the queezy side this afternoon. She
was going to make lasagna but postponed it. Trying to keep Bethany entertained is
getting increasingly difficult. I think I'm going to have to break into my broadway song
and dance routine with the top hat and cane pretty soon.......that won't be pretty...heh
heh! Everything is starting to get to a weird level of normal for now. We are getting
familiar with the routine and trying to roll with it as best we can. I get lots of well wishes
from fellow police officer of other departments on the computer in my patrol car while
I'm working. They are all very appreciated.