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20 April 2008
13 years ago today I (we, the world) was given the very special gift of YOU. Stefan - although the loss of you hurts
more than I could ever express in mere words the gift of you for 11 1/2 years is also more wonderful than I could ever have
hoped or prayed for. You remain my Sweetheart, the love of my life and my little guy forever and ever. I love you Stefan.
Happy Forever 11 today.
We all miss you so much and will be remembering you with your favorite Red Velvet Cake. Your family and friends will
be visiting your garden later today. Did I mention that I LOVE YOU? I love you Stefan!
Mommy
February 11, 2008
Hey guys. Nobody's updated in a while, partly because of problems with Verizon (stupid company...). Everyone here's
doing fine. Victoria started homeschooling, Baby is cute and talking a lot, I'm drowning in Junior year work, Garth's just
Garth, and Mommy's dealing okay.
On New Years Eve we had a memorial for Stefan at our house and people stopped by to pray in his room and eat food that
my mom made. We've already started planning the next Stefan memorial which will hopefully be a big fundraising event at the
recently opened NOVA Baha'i Center.
I have exciting news too. My awesome Creative Writing teacher decided a few months ago that it would be beneficial
for me to write a memoir of Stefan. I started writing one and she decided it was great. She contacted an editor friend of
hers and read him some and he was going to come visit my school and meet me. I was under the impression that he was going
to tell me how to improve my writing and such, but I found out that he was going to offer me a contract. That was a complete
surprise. My teacher had talked about publishing it, but I never took her that seriously because she said that about a couple
other things I've written too. Since I'm a minor, the editor has to meet with my mom too and he should be here in a couple
of weeks. I might be a published author by the end of the year!
Stefan's birthday is in a couple months and we're hoping to collect toys and things to add to our collection that my
mom will take to Children's Hospital. I'm not sure exactly what she's going to do this year for Stefan's "Forever Eleven"
party, but it might be at Chuck E. Cheese.
We've gotten a few signs from Stefan lately. One was particularly surprising. On our home phone a little message was
saying that we had a new voicemail, but it shouldn't do that because the phone isn't connected to the voicemail. My mom was
talking on the phone last month and the message started flashing. When she checked the voicemail, there was one message that
sounded like just static, but you can hear quite clearly a little voice that says "hello" and sounds just like Stefan.
There was no incoming call or anything- the message just appeared. Stefan used to watch Silvia Brown when she was on Montel's
talk show and hear about all these people calling on the phone after they had passed. I guess he figured out how to do it.
We'd also like to remember Stefan's angel Mike Gabriel from Australia. He passed away yesterday afternoon at age 47
after a long battle with a Glioblastoma stage 4 (brain tumor).
Love, Jessica
20 April 2007
HAPPY BIRTHDAY STEFAN!!!
Good Morning All,
We awoke to sunshine this morning - not the usual sunshine - but pure white sunshine flooding through all the windows,
down the hall, and in every corner and space it could possibly touch. Twelve years ago tonight I gave birth to the most incredible
man I have ever known - my little sweetheart and forever love of my life, the mighty BT angel Stefan.
I think about him before, during, and after every heartbeat. Although he was always a unique and precocious child he
showed bravery and courage this past year on a level I have never seen before and can only hope to have should I need it some
day. Stefan is my son, my hero.
We are celebrating by having a "Forever 11" birthday each year starting this year. Today will be quiet -
just family and a friend - and we will go through pictures of Stefan and place them in albums. We will have dinner and his
favorite - red velvet cake. We have presents, toys, and a few people from craigslist (I posted an ad) have dropped off toys
as well. Next Thursday we will take them to Children's National to the BT clinic to fill the Treasure Chest. Stefan got to
take from the chest only once in his journey - and that was last April 20th. When I asked why he was never invited to a gift
the nurses explained they never had any toys for boys. So we aim to fix that - at least once a year - in Stefan's honor.
Today will be spent baking and then a trip to his grave to plant some chocolate mint as a ground cover (the caretaker
is gonna love me!!) Stefan loved to eat mint right out of my herb garden.
Next year, God willing, it's back to Chuck-E-Cheese. Stefan had his very last birthday party there and it was his favorite
place. Energy provided - we will make this an annual tradition and raise as many toys for boys as possible so that no little
boy at Children's has to go without a gift after completing a painful or just plain dreaded procedure. Go Boys!
Please, all, join me in wishing Stefan a Happy Forever 11!
I want to share some dreams that Stefan has appeared in. In one of my dreams a few weeks ago we were in an ambulance
headed to the ER and I realized it was a 2nd chance - Stefan was still alive and we had the opportunity to make it different.
I won't go through the whole dream but in it I was asking Stefan what we needed to do to fix it this time - "Stefan,
how do we fix this?" Stefan replied in a very weakened voice "Pray".
In another dream last weak Stefan told me "Morning (mourning?) prayers are the most potent." It is clear to
me that I need to work on my praying - which is the hardest thing to do the more grief stricken I become. And, yes, it is
getting worse as each day passes without my little guy. Jessica dreamed she was driving (Fat chance before she is 40!!!)
and was headed down the street the wrong way. She received a text message on her cell phone from Stefan, in his handwriting
"Hey jessica, I can drive now! Don't worry. I am helping you!" and it was signed in kid's handwriting - Stefan,
Barbara, Nicky.
A friend saw Stefan in a dream last month. She said he was very sad. When she asked him "Stefan, why are you so
sad?" he responded "It's my mommy - she cries." The friend asked if he wanted her to talk to me and he replied
that he did - "Tell her not to cry." He then went over by a window and she asked him what it was like in the other
world. He shrugged his shoulders and said "I gotta go. We are playing ClowninArounin."
Sounds to me that Stefan is alive and well and having a great time with some other children. And while that does not
make the missing him any easier it warms my heart to think of him running and playing and being happy.
14 January 2007
It has been 8 days since I last kissed my little boy. He arrived home last Friday morning
and spent the night in his own bed. At sunrise Saturday we washed and annointed his body with rose water and gardenia oil
(for mommy), robed him in the finest white silk, and prepared him in his casket. Prayers and meditations were said before,
during, and after for strength for the family and for expedition of Stefan's soul to the right hand of God.The casket mattress
was decorated by close friends and family with notes to Stefan. I kissed his pillow and left a print where his head would
lay. Stefan was layed in his casket with love and tenderness by his family and close friends - no strangers were ever
involved in this part of the journey. His head was adorned with baby's breath and orange rose buds, and Melyssa Mae and Victoria
Rose strew orange rose petals on Stefan and inside the casket. It was a very beautiful sight - so peaceful, so angelic. Having
Stefan home one last time was beyond comforting for me - it was essential. Having my hands on his little body and helping
him through this process as well as we could from this side - a last act of love and respect for this little broken body that
carried this huge and incredible soul - was essential for comfort and well being. It allowed me, personally, to be at peace
with and be closer to embracing his new station. This will never be easy and, in fact, is getting harder by the day, but I
will forever be grateful to my husband and family and close friends who helped me carry out his final plans in our home and
with our hands.
I have never understood how someone could describe a funeral
as "nice". So I will use the word fulfilling. The day was a record warm temperature - gorgeous! The funeral home was on overflow
- estimated participation of over 200. I only regret that we were not able to meet with everyone who came. The music was soulful
and beautiful, the prayers and meditations were uplifting - all focusing on the next world of God and how wonderful it will
be. Being Baha'i we have no set rules on how to have a funeral. Stefan enjoyed a complete Baha'i burial with addition of readings,
music, and prayers from family tradition and spiritual diversity. We had personal words from family and friends that brought
both tears and laughter. The procession to the cemetery was quite long. Graveside we said the Baha'i prayer for the departed
in unison, Victoria said "Now I lay me down to sleep...", and Jessica said the "Lord's prayer". Rock of Ages and Amazing Grace
were both sung. We kissed the casket and moved across the road to the social hall where KoKo Taylor was shouting "Everythang
gonna be awright!" to a room full of our loved ones and a full Persian buffet. I honestly don't know how Persian women can
cook so fast and so good - but they sure do and we are so thankful. The food was delicious, the cookies and hot chocolate
went fast, and the tunes being spun by best friend Deihim were celebratory of this little guy's life. My little guy - one
so small in size yet such a huge impact on all whom he touched, even in California when he was silent. My little guy - how
humbled I am by this experience - to have born and parented one so very special that God would call him home so early. My
little guy - always and forever on my ips and in my heart.
On an interesting note - while crying continuously last week
and asking Stefan for a sign to let me know he was ok - a sign was given. Stefan's little body arrived home Friday morning.
Saturday morning at 4:08 AM a toy siren went off in the house for a minute or so. I checked the house but it had ceased, and
all but Jessica were asleep in my room. Back to bed and I heard some shuffling. Up again to inspect and all was still. I thought
I saw a light in Jessica's room but when I opened the door it was dark and she was fast asleep. I went back to bed but did
not sleep. About 8 AM in Stefan's room I was relaying this experience to my 5 friends who had gathered to wash and dress Stefan.
When i said the word "siren" the siren went off again. We located the area - Victoria' s room, but not the source. It happened
once again when Jessica was upstairs and for the last time when Garth was closing the casket. My friend from Atlanta, Lynn,
heard all the night time activities as well even though she was downstairs. Go Stefan!! The siren has not been heard again
- although while straightening some askew pictures in his room 2 nights ago the smoke alarm beeped at me. And again at Garth
when he was straightening pictures outside Stefan's bedroom. No more beeps - just those 2 times. I had yet again been asking
Stefan to let me know he was ok.
I take it hour by hour at this point. Some hours are peaceful
and some are hard. I finally made it to the grocery store 2 days and "saw" Stefan on the shelf behind the paper towels. He
and VR used to like to hide there and surprise me. I "see" him everywhere we ever went. When we pass a diner I can still "see"
us sitting there having lunch or talking about crackers. His presence is so strong and it is a hard concept to grasp that
this huge part of my life - this very warm and real little boy - is no longer. This is what I believe will be harder
to accept as time goes by.
We have some friends continuing to move on down the BT road.
Please remember Kate, age 5, in your prayers. She is in MI and non-responsive right now. Her mom and dad are praying for a
miracle. A friend Irfan's mother is having a hard time and needs prayers for continued recovery. A 3 month old baby, Rayley
Rose, has been diagnosed with a BT and her family needs prayers for treatment guidance. BT treatments slim pickens anyway
but when the age is so young it is even slimmer. There are many on this path that need prayers - for the patients as well
as the families. It is a hard road - during and after.
We are thankful for our extended family, our Baha'i family,
and our close friends who may as well be family. It is only with the help and support of this large community around us (and
in CA) that we are still functioning. Please keep Stefan alive in your thoughts and the memories of others. Speak his name
every chance you get. We need to make sure Melyssa Mae always remembers her brother - that was very important to him.
Love,
B'Lynn
January 4, 2007
Our family will recieve visitors at our house on Friday the 5th from 5 - 9pm. The funeral will be Saturday January 6th
at 12:30pm at Loudoun Funeral Chapels and the burial will be afterwards at Union Cemetary in Leesburg Virginia at 3:00pm.
After the burial, there will be a Blues Celebration across the street at Ida Lee Recreation Center. Cookies and hot chocolate
to honor Stefan and food for hungry people will be provided. Friday night from 5 - 9pm there will be open visitation
at our house.
The address and phone number for the funeral are:
Loudoun Funeral Chapels
158 Catoctin Circle
Leesburg, VA 20177
703-777-6000
<3<3
Jessica
January 3, 2007
Funeral details are still being worked out, but it is going to be held this Saturday, January 6th, at Union
Cemetary in Leesburg Virginia. There will be hot chocolate and cookies afterwards at Ida Lee social hall.
<3<3
Jessica
December 31, 2006
Stefan gained his wings by way of a Lear jet from California to Virginia. He rose to sit at the right hand of God at
2:30 p.m. in his family's embrace and surrounded by his friends and loved ones. His baby sister, Melyssa Mae, started crying
the moment his heart stopped. Prayers and Persian chants accompanied Stefan on his ascension to the Abha Kingdom.
<3<3
Jessica
27 December 2006
We are not doing well. We are still in the hospital but no more care is being given - not by
our choosing. We are actively seeking medical professionals here who are willing to help us help Stefan rather than give up
and let the worst happen. We were informed on Saturday that the previous Saturday's CT showed uncal herniation - not a good
thing. This realy sucks. Stefan was responsive until Christmas day - a bit yesterday and not much today. Need tons of prayers
and guestbook signings - let this strong little guy know how important he is.
God Bless,
B'Lynn
17 December 2006
Hey all - we are in the PICU (pediatric intensive care unit) at our personal oasis. Yesterday at 2
AM Stefan's heart rate started fluctuating 100 points in either direction, along with a drop in serum oxygen saturation. In
addition, he has developed purpuri over his abdomen and some joints. Unsure of what is happening, but mommy instinct on full
alert, we brought him here to the ER for DX work. He was admitted and here we are. Working dx is possible pneumonia - and
I have requested a sepsis culture on his blood. That should be done in another 24 to 48 hours. Seems the all mighty decadron
could be the cause of the vascular bleeding (spots) - long term steroid use is linked to vascular purpura. Gotta love it.
We have moved in to a hotel since we are in the hospital and have not been able to find another rental
until after Christmas. Victoria Rose worries Santa may not find us. I don't feel like celebrating anything like we used to
without full participation from Stefan. I miss him - his creative little hands making pinch pots (and wondering why mommy
gets to keep them all) his sparkling brown eyes as he leaps down 5 stairs at a time, his awesome Blues voice singing along
with KoKo Taylor, Motor City Josh, and Larry Griffith, and his kiss on the cheek and "I love you" every single morning at
school drop off even when we were tapped out at eachother - he never missed a day.
Christmas will be slim pickins' this year due to time and energy constraints. But the spirit of Christmas
is alive and well as we are so greatful that our awesome Brain Tumor Warrior is pain free, mentally entact and the most amazingly
peaceful little guy I have ever known.
God Bless and pray us Godspeed to a speedy recovery for Stefan and a suitable place to have a family
Christmas. (And that Santa finds Victoria Rose!!)
B'Lynn
03 December 2006
Hello All,
Sorry so late on the update. Wireless continues to be a challenge
up here on the cliff. Stefan started vomitting a few times last week so on Wednesday we brought him in to the ER (yes, the
same ER) for a CT. We also asked for a chest xray and some bloodwork. At first review the doctor suspected aspiration pneumonia
and advised us to consider admitting Stefan for a round of strong antibiotocs. We consulted and decided to be aggressive on
this so we are in the hospital. Second doctor did not think it looked like an aspiration pneumonia but it was certainly something
going on in his left lower lung. He ordered a spiraling CT of the lungs. Third doctor brought us great news that there is
no infection. What appeared on the films is (and i don't know how to spell this) adelecticus - where when you don't breath
deep enough for a time the bottom of the lungs fail to inflate. The treatment for this until Stefan is up and about on his
own is a positive pressure treatment where a mask is worn and puffs oxygen strongly into his lungs each time he takes a breath.
Interesting - and it appears to be working as the next xray showed some improvement. In the meantime ... I noticed Stefan's
heart rate on the monitor jumping a bit and getting very low for him. His base line while on the decadron has been about 120.
His heart rate has gone down to 70 and 80 a couple of times. Not normal for him. Doctor 4 was concerned enough to order an
echo cardiogram. There is some concern with diminished function so it will be repeated on Monday. Many things can cause this
- acutely and chronically. It is mild and could be a reaction to whatever is happening in his lungs. Time will tell but there
is no major worry at this time. Blood work has all been really good. CT scan was just that - a ct scan. There is really no
way to determine swelling vs progression on either MRI or CT with Stefan's tumor. We were able to make sure he did not have
extra intercranial pressure - his ventricles are all open. But that is the extent of it as a diagnostic tool in this orphan
disease journey.
A word about this children's hispital - we have found it to be a
small oasis in the middle of a hostile allopathic world. The doctors are real doctors and are here all the time - some stay
24 hours. There are no residents. The nurses are not only well trained, caring and genuinely friendly they can sneak in and
out of your room in the middle of the night and you (even me!!!) will never know! Rounds and treatments and labs are
geared totally around the patient and how he is doing/feeling etc. While we were hesitant about coming here after the
social services accusation, we are certain we made the right decision. This one floor is a seperate entity from the rest of
the hospital. It is called CHOC at Mission and we are greatful they are here. Stefan has been more than his "brain tumor"
while we have been here - he has been the whole child with all things being checked and considered important to his well-being.
Thanks you CHOC at Mission!
This morning a huge group of Bikers showed up dressed like Santa,
bringing toys galore and accompanied by a firetruck. Apparently they ride each year to raise toys and $$ for this hospital.
Stefan made it outside in a modified chair and it was wonderful to have him in the sun. While he seemed to enjoy looking at
the bikes I believe it was hard for him being the one in the wheel chair that everyone wanted to come talk to. I have encouraged
him to look at this as a role he is playing in a play for now. Learn all he can and do it well and remember it will not last
forever and is a good learning opportunity.
The good stuf: Stefans left eye has been closing when he sleeps
since Friday and his right eye is looking at things again instead of just down. Small, maybe, but good and I'll take them.
And his friend (and ours too!) Deihim is visiting from VA. Deihim and Julie married on 08/18 and Stefan danced with me at
their wedding. Seems like not that long ago but the changes sure have been many.
Jessica started school last week and has already had 2 exams. Ever
the over acheiver that girl. Victoria Rose is growing stronger by the day and is really a big girl now rather than a
little girl. Melyssa Mae grew more hair and it sticks up like a chia pet but not curly.
We met some new friends here in the oasis. Please remember Janna
and John and their families in your prayers as they recover from recent hard times. As always, little Chase, Kate, Preston,
Isabelle, Keith, Rachel, and the many children and babies who are going through similar challenges in their lives. And new
friend, Poupak, her grandmother has been ill and needs prayers.
An interesting side to this visit at the oasis is that they have
a practitioner of Traditional Chinese Medicine on grant and accessible to the patients. We have had the privilage of 2 acupuncture
treatments thus far for Stefan. Although we sure miss being home we feel we are in the place we need to be to find the right
tools Stefan needs for healing.
Blessed be ....
B'Lynn
15 November 2006
Hey Y'all,
Been an interesting week. First - the guestbook on www.SaveOurStefan.com will be up and working in the next day or so thanks to the generosity of Chris and his co-workers at
MoonRay web design in N.C. - Thanks Guys!!
Stefan has gotten past his "upper respiritory" whatever it was. The cultures
all came back negative and he has responded to an antihistamine so it may just be allergies. Today, however, he has been vomiting
and diarreah since 5 AM after taking a first dose of an antibiotic last night. Stefan never does anything half way or anything
the way others do so we figure it is the antibiotic that caused this. He has been better the past 4 hours and is taking food
once again.
We were surprised by a visit from Social Services of California yesterday.
Seems the social worker and/or home health nurse from Mission Hospital in Mission Viejo accused me of "neglect" in regards
to Stefan. We were prepared for such a thing since another family in Michigan (www.chasesammut.blogspot.com) went through a similar but worse situation when their son was sent home from the hospital as "non-responsive"
and called in hospice, and they managed to not only keep their son alive but he is getting better. A dismissed and disgruntled
hospice made accusations against them as well. Nothing held up but it caused an already stressed family alot of problems.
The same here. The accusations were noted as "unfounded" and the visiting lady was extremely professional and caring but it
has given me a headache for 24 hours now. I wish all clueless people would stop and think before they try to involve themselves
in someone else's business whether they are doing good or harm. In the case of a seriously ill child they can not only jeapordize
the child's well-being but his life by being ignorant about the disease process, his situation, his doctors recomendations,
and the family situation. Nurses and social workers, good as they are, are not as educated as the families in an orphan disease
and they should accept that and understand that families know much more than they do in many cases. Stefan is under the care
of a leading pediatric neuro-oncologist, Dr. Finlay, while we are out here, in addition to seeing a pediatric neurologist
here as well as Dr. Karam being completely informed of every move we and he makes. To top this off - the ignorant party
freely gave child services Stefan's website for review and never even bothered to sign the guestbook showing any type of encouragement
or caring for Stefan. It makes me wonder, really, exaclty how well intentioned this person was.
We received Steven Seagal's number Sunday night and a call from his friend,
Don, tonight. Steven has heard of Stefan's plight and wants to visit Stefan. Seems Steven is not just an actor he is an animal
rights' activist, a vegetarian, and a Blues guy (http://www.stevenseagal.com/). He is Sending Stefan a copy of his cd tonight and is trying to make room in his schedule to come visit him here. Having
the Blues around will certainly boost Stefan's moral right now. The major turning point in his improvement before was his
gig at the Austell Blues Fest in May - he started walking again just for that! He is an amazing little guy who continues to
go through tests on this BT journey with amazing strength and bravery.
Please say prayers for little Isabelle in TN who is battling leukemia. Her
mom rented us this condo while we are here. Also, a friend had her first grandchild last week, Ivy, and little Ivy was put
in the hospital at 3 days old. We talked to a mom yesterday who has 5 year old twins - Eric and Kate. Little Kate has a brain
tumor and is starting to decline. The doctors can do nothing else and mom is really having a hard time. Chase continues to
get better. And we are still remembering those who succumbed to the tumors - the newest angels in the brain tumor war: Leo,
age 3/ Hannah age 5/ Katya, age 5/ David, age 26/Steven, age 30/ Rose, age 22/ Lou, age 76/Brad, age 50ish/Cooper, age 5/
and Matthew, age 30.
Jessica continues to get her school work from back east and is doing a great
job of self teaching and keeping up. Victoria Rose isn't quite as diligent but has been working on a daily travel journal
and her handwriting. Melyssa Mae got a new high chair and insists on feeding herself now. You can't even help hand her the
spoon! Ah well - Little Miss Independence.
Life continues. The Baha'i community here is very active and seems to be
quite large. There is much for the girls to do and much support for us. We are looking forward to meeting more people as we
go through this.
The NG tube feeding has been a challenge. The things other people
feed their loved ones isn't for Stefan - Boost, Ensure, etc - because of high sugar and milk products. So we have had to become
quickly educated on what raw foods will supply high protein and high calorie for Stefan. We have made alot of progress and
it is working great now. He is going to be SO healthy when he gets better! Oh - someone DID steal our flat of wheatgrass yesterday
so we had to buy another. Only in California ........
That is all for now, folks. Please remember us in your prayers as we continue
this long road.
With many thanks for wonderful old and new friends,
B'Lynn
08 November 2006
Hi All,
I am sorry we have not updated. We have been so busy it is unbelievable. Briefly:
Stefan has his first upper respiratory infection and is on 4 days of anti-biotics. Nothing
serious - rather mundane. But we have not had alot of cooperation with the medical community here as far as trying to meet
his needs for care. I inserted an NG (feeding) tube Saturday night due to Stefan not being able to chew enough daily to have
enough nutritional intake. Things should start improving with this addition-he has been very weak and has lost 8 pounds since
last month. An MRI with Dr. Finlay last week showed massive swelling and possible progression. Not sure if the "Northern Aggression"
is on the move or the cells are sick and dying from treatment as they both look the same on a scan and the symptoms are identical.
Time will tell. Dr. Finlay is an awesome doctor and very caring and hands on. We are fortunate to be here and that he is willing
to see Stefan.
The good news - Stefan can move his right arm voluntarily again - after 9 weeks of paralysis.
He lost his left side 2 weeks ago but the leg is back and the arm moved once today. We are hopeful.
California is cold. In fact, the homes here have no AC but they all have fireplaces.
The beach is beautiful - but 165 steps down a cliff so Stefan and I have not had the chance to partake. Stefan is hanging
in there and working VERY hard at healing. Please remember him in your prayers and leave him a note so he remembers that he
is such an important part of so many lives.
B'Lynn
23 October 2006
Dear All,
It was a long and beautifully scenic drive and we made it safely to the coast. We have
been staying at a hotel but will move to a beach house this afternoon. Stefan has made some progress in moving his right arm
on occassion. We have also been successful in slowly decreasing the steroid down to 3 Mg a day - which is still high - with
no signs of neurological decline. The Boswellic acid and CoQ10 have really kicked in and I feel optimistic about the changes.
On the down side, Stefan has continued to weaken even though the steroid is decreasing. Last time he regained strength as
we went down on dose. I am at this time going to have an endocrinology workup done to see if his adrenal glands are not functioning
as they should. Both the steroid use and the contrast agent from the many MRIs can and do cause damage to the adrenal glands.
We shall see. Dr. Karam is still working with us from back home to get everything Stefan may need - we love him!
We have started a treatment and are on day 4. It is very promising
to say the least. We are working directly with the research scientists who developed it. How often do you get to have one
on one consultation with anyone about your case? I can tell you - none. This is a first and I believe God led us here to these
wonderful scientists. I cannot go in to detail at this time but will update with improvements as they come. I am so thrilled
to be working directly with scientists rather than clinicians!!! Organic chemistry class sure comes in handy!
That's all for now. Please keep the prayers coming. And please
remember little Leo Dubinsky (age 3) who gained his wings at 3 AM this morning as he succumbed to his brain tumor. Also, little
Isabelle is fighting leukemia in Tennessee - her parents are renting us their beach house while we are here.
God Bless,
B'Lynn
12 October 2006
Hey All,
The CPT-11/Avastin that we tried 3 weeks
ago made Stefan really sick for 2 weeks. It also affected his blood counts - although not as badly as the Temodar did. I give
credit to Stefan for that - and his willingness to take supplements 24/7. Stefan has decided to write a book when this is
over - "A Million and One Mushrooms - How I beat Cancer!" He takes about that many Japanese mushroom capsules of various species
daily.
The MRI last Thursday post chemo was
worse than before.
Physically, Stefan is better than he
was last week but far worse than he has been since April. His right side continues to be paralyzed. His left eye is partially
paralyzed. He has lost ALL his muscle tissue now, courtesy of our beloved decadron. His little hip bones protrude. He cannot
hold his head up. BUT - he can eat, and he can say "Get off me!" "Cut it out!" Stop It" and "No". Each morning I ask him to
say "mommy" and he does. It makes me cry - both from joy at hearing it and from fear at how weak he is. He can no longer write,
read, and can barely talk except for what I explained. Oh - and after finishing up something yesterday he calmly said "I believe
I am finished" - a whole sentence. He amazes me!
We leave tonight for the west coast.
There are no options here that will cure Stefan or keep him alive. Dr. Packer was very blunt about this prognosis in the very
beginning. I suppose we should have headed out back then. But we are now - and there is alot of hope.
Gotta run. Pray for a safe journey and
a comfortable one for Stefan. He still grins and smiles at some things - cute as ever. And his teeth are SO white!! Must be
the mushrooms!
B'Lynn
30 September 2006
Dear All,
Well, we made it through another eventful week. Week's start found
Stefan sleeping alot, very weak and not really able to talk - very weak voice, hard to say more than one word. His blood counts
were ok - platelets had fallen to 190 and WBC were good at 9.0. By Wednesday he was again vomiting several times. Children's
has chosen not to grant my request for an MRI prior to next week when they want to do another round of chemo. Thank God for
caring doctors who give personalized attention - we had an MRI at Loudoun on Wednesday to rule out brain bleed - one of the
side effects of this chemo. Symptoms of a brain bleed include headache and vomiting - both of which Stefan was having. Brain
swelling can cause the same symptoms - and swelling could be caused if the cesium or the chemo was working, making the tumor
cells sick, and they swell up then die. It was best to rule out a bleed so we know what we are dealing with. The very best
diagnostic tool we have for detecting bleeding is called a gradient echo and is done with an MRI. It is by far the most sensitive
and will show fresh bleed as well as any particle of a past bleed. We spent yesterday visiting our wonderful pediatrician,
Dr. Claude Karam. He was the first person who took me seriously enough and was concerned enough about Stefan when he first
met him in February to order an MRI and he has been with us ever since. We love this man! He had some time with Stefan, examined
him, made him smile and chuckle, and offered him a wish. We also found out that the multi-talented Dr. Karam pierces ears
so Victoria Rose will be visiting him soon. After meeting with Dr. Karam we went to lunch at Stefan's favorite BBQ and BLUES
place - Red Hot and Blue. He vomited as soon as we got there but wanted to stay anyway. He managed to get a serving of mashed
potatoes down - the most food he has eaten in 3 days. He has lost alot of weight. Part of that is due to the high pH diet
and part is recently due to his loss of appetite. Of course, the decadron wasting away ALL his muscle tissue last month hasn't
helped. My fingers fit all the way around his calves and upper arms. After lunch we had to go to the hospital for blood work.
Stefan has been great about taking his umpteen million supplement capsules per day and it is paying off. While his WBC are
falling (5.9) his platelets have grown to 230. We hope nothing falls upon the next test Monday.
Today brings us up early as usual - 4 AM - to begin supplements.
Stefan wanted to soak in a hot bath and wash his hair so we spent the morning doing that. He is clean and handsome as ever!
We continue to search for better educated, aggressive, and creative doctors
who know the monster glioma and want to terminate it. We are thankful for the good friends we have that are standing by us,
and the new friends we have made along this journey. Sadly, many of our former "friends" choose to ignore us for reasons only
known to them. I don't have the time or energy to try and figure it out but it seems to happen to many of the young brain
tumor warriors. What is the shame in this is now is the time Stefan NEEDS his peers and friends to maintain some semblance
of normalcy in his life. Moms just don't complete that part of the circle. His basketball team, cub scout troop, school friends,
and neighborhood friends have all vanished. My prayers go out for these families that they find a way to incorporate compassion
and caring into their parenting before it is too late.
Thank you for all the notes on his site and the emails. Keep 'em
coming - each and every one of them brings a smile to his day. B'Lynn
23 September 2006
Hey All,
Just a quick update. Yesterday was really,
really scary. Stefan was vomitting, not responding a whole lot, lethargic, with headache. These are symptoms of both brain
swelling AND brain bleeding. We couldn't get a response from Children's again until late. His right shoulder was hurting so
bad he was crying. I contacted a friend and she contacted a friend and they contacted their friend - a chiropractor - who
came by to check on Stefan's shoulder. My fear was that in one of many times of trying to lift him I may have dislocated
his shoulder. The chiropractor ruled that out - praise God! And he asked if he can come by after work on Monday to adjust
Stefan. In addition, Stefan's Godfather, Dr. Frank (AKA Uncle Bunker), drove down from PA today just to adjust him. While
he was here we had toe movement on the right foot and right arm movement at the elbow. Thank God for angels and thank goodness
for small signs of improvement. We have had an offer to host and set up Stefan's new web site from Moonray in NC. They have
the preliminary set up already. We are so excited! We just have to email the info to Chris in NC so he can finish. He must
have stayed up all night working on this - we are SO thankful! The new site address is www.SaveOurStefan.com (SOS) and will include a donation page which we hope to keep busy with some local fundraising to help
with these huge not-covered medical andsupplement expenses. I will post a forward on this site when the new site is complete.
Thanks Chris and Angela and MoonRay!
Stefan hasn't spoken much in the past week - barely at all and then
barely a whisper. In the wee hours of the morning he was moving around in his sleep and I was trying to find out what he needed.
After shaking his head at all my questions he simply replied, loud and clear "adjusting position". Now THAT is just like my
little guy - he didn't say "moving" or anything simple. Just "adjusting position" I have to laugh :-)
B'Lynn
20 September 2006
We have just returned from a 9 1/2 hour day, not including
the 3 -4 hours travel, at Children's. We were there last night until almost 9 PM as well. Last night we had an MRI/gradient
echo done to rule out bleeding so that we could begin the CPT-11/Avastin chemo today. The MRI report is not so good. There
is an area (infarq) that resembles a small stroke area. This made the decision to do the Avastin even more scary as there
is a risk of a brain hemorage anyhow and the infarq increases the risk. After 5 1/2 hours of infusions, Stefan is now home
and laughing and smiling at his sisters. he slepy through most of it. Not so surprisingly to those of us who know Stefan and
his uniqueness he had an adverse reaction to the iv benedryl of all things. We monitored heart rate and he made it through
the scary oart fine. We are not out of the risk time yet but we are at a smaller risk than we were this morning. He continues
to amaze me, this little guy of mine. His patience and strength in this challenging time is almost saint-like. I would be
the meanest most rotten kid around if I felt like he does and he is an absolute angel! Please keep praying. The plan of attack
is to ty to shrink the tumor burden quickly by the toxic method, continue alkilizing his body, and throw everything and the
kitchen sink at this beast until it is gone. The challenge will be in keeping his bone marrow from crashing again. If we can
keep that up we stand a really good chance. Keep the faith and please, please keep letting Stefan know how much he matters
to us all!
B'Lynn
17 September 2006
This was a week of little sleep and lots of worry. Since the scare
from the ER last weekend B'Lynn is sleeping next to Stefan. The baby wakes up about every 90 minutes to 2 hours to nurse so
she is running back and forth. Friday night she was able to get 4 hours in a row of sleep for the first in a while. Stefan
is still holding his own. His right arm is still somewhat paralyzed, as is his left eye. We started High pH therapy last Wednesday.
So far we have managed to get his after meal saliva pH up to 6.0 from about 4.0. The goal is to reach at least 8.0 and hold
it there for a few days. Since tumor cells are highly acidic the alkaline pH should start making them get sick and die. We
are doing a very low dose under experienced hands. We don't want to make them all sick at once because that could cause additional
brain swelling.We have made some wonderful new i-net friends this past week and they are checking on Stefan on a regular basis.
In addition, the Loudoun Baha'i community held a prayer chain at 9 PM last night. We have a large community and many of the
members have large families from all around the world. Emails were sent out so many more were praying as well. We really need
those prayers. Stefan continues to be quite weak but in the past 2 days isn't sleeping as much during the day. He is still
not talking much and lying down but he is alert.
Yesterday at a family activity some of our friends wore shirts with
Stefan's picture on it and SOS - Save Our Stefan. We have certainly made some wonderful friends through this.
We have purchased the domain name SaveOurStefan.com and will be moving
the web page over there as soon as we can. We have come to realize we will need to take up offers we have had for fund raising.
We thought that since Garth works and we have insurance that everything was ok. But we now realize what many other families
in this situation have learned along the way. When such a catostrophic illness affects a family you are better off if you
have NO insurance or job. I guess that is what they call the working poor? Anyhow ...
If anyone reading knows how to set up this new web page or move this
one over there we could sure use the help. There is just no time right now to learn new things - or energy.
Thank you all so much for keeping Stefan in your thoughts and prayers.
We ARE going to pull him through this!
B'Lynn
Just a quick Sunday morning update. Stefan is holding his
own. He is eating well, yelling at his sisters when he sees fit, only choked once this morning when drinking down 12 supplements
- that's an improvement. His right sided weakness continues but he can lift his arm and squeeze my hand lightly. Mentally
he is as sharp as ever and alert. Just weak - lack of energy - but not too weak to refuse organic carrot juice! That's my
guy! Thanks for the notes - he is loving feeling that so many people care about him. We read each one aloud to him and he
smiles that huge Stefan smile!
B'Lynn Please read below to see the latest medicl update from Friday at the E.R.
08 September 2006
It has been a rough few weeks. Stefan's blood counts dropped on 08/03 and we stopped the
chemo. His bone marrow is still recovering from this one. An MRI on 08/22 showed no change from the one on 08/05. He has become
increasingly weaker. I suspect the decadron since all his muscles are wasted away again - just like the last time he was on
this horrible stuff for a period of time. The doctors keep raising the decadron each time he becomes weaker - they think it
may be the tumor burdon. Today we spent in the ER again for some blood work and an MRI. The MRI shows no change still - which
is good but doesn't explain his symptoms - weakness, having a slight (but noticeable to me) difficulty swallowing. The ER
doc is a sweetheart - ordering the MRI for us last time and today. She is quite concerned about this decline happening so
quickly. She also believes his breathing is "different" - coming more from the stomach than the chest. She expressed concern
to Dr. Packer. he ordered 10 Mg decadron at the hospital and 4 Mg every 6 hours. He suggested we bring Stefan to Children's
to check in. I don't want to panic anyone but he thinks we are "losing the battle" and mentioned calling hospice on Monday.
This is unreal. One would think that if we were in such a shape I would notice it, right? I'll be up most of tonight nursing
a headache and researching every option possible to figure out what to do. Our options:
Go to San Diego for 3 weeks of intense immune boosting and therapy.
Go to Houston for the Burzynski trial.
Look more into cesium chloride and be brave enough to try it.
Check in to Children's over the weekend to begin a CPT-11/Avastin trial.
If we had stopped at 1 round of temodar I think we'd have been better off. The tumor shrank.
But after round 2 his blood counts fell to zilch and the tumor came back meaner than ever and even started migrating in to
his brain stem. My fear is that even if the CPT-11/Avastin shrinks this monster Stefan will experience bone marrow toxicity
again and the same thing will happen. The first time his counts collapsed it lasted about 2 weeks to get them back. It has
been 5 weeks now and we are not back to normal yet. I guess it gets worse each time it happens.
Please pray really hard - for Stefan to have strength, and for us to make the right decisions.
I'll try to update briefly as soon as we figure out what to do.
B'Lynn
17 August 2006
What a week! or two! Last week I met with the
4 docs at Children's (2 NO and 2 ONC) and the monster has indeed progressed. It is as big as it was to begin with. What scares
me most is that it has an area of new growth near the brain stem. The "official" recomendation at this time is to do whole
brain radiation. However, knowing how I feel about that, Dr. Packer said they would be willing to let us try the CPT-11/Avastin
chemo if we choose. His main concern is that we may reach a point where radiation will not be an option. For anyone who does
not know, radiation has not been proven to increase overall survivor rate of brain tumor patients. It can, and sometimes does,
alleviate symptoms by decreasing the tumor size temporarily. The tumor always comes back and, in the studies I have found,
comes back with a vengeance in the form of an even meaner monster. Re-growth can occur as soon as a week after radiation is
complete or longer on down the road. There is NO way to tell. And the side effects are horrible - both the short term as well
as the long term. The chemo isn't much better in the short term effects. And we don't know anything about long term on this
one yet. What choices, eh? It had me quite down for many days and then about 4 days ago I just got the feeling that it was
going to be ok. Absolutely nothing rational to base it on. Stefan is weak, most likely from the decadron (steroid) and has
to hold on when he is walking around the house. His right eye is still crossed when he looks left - but I see the tiniest
hint of improvement. His voice is strong and clear, he is finally sleeping (thanks to the melatonin) and his spirits are good.
We decided that as long as he is not symptomatically getting worse we would like to hold off on anything. My gut feeling is
that the Ruta-6/CalcPhos is working now that he is off the Temodar. Our appointment at Childrens this morning was ok. Dr.
Packer has pronounced Stefan "stable" at least for now, affirmed we are declining radiation, and said we can't do anything
right now because his platelets are still down. Today they are up to 25. Last week they were at 13 on Thursday, 18 on Friday,
23 on Monday. His WBC (immune system) is holding its own.
Stefan wanted a treadmill. If you know Stefan
you know he hit the ground running at birth and never stopped. Even up to 3 weeks ago he was outside walking the block every
day. He can't do that now - is too weak and it is too hot. So he asked for a treadmill. Well, the last time Stefan was on
a treadmill was 2 years ago in Tennessee at Garth's Dad's house. We heard a THWAP and the kids came running. Stefan had gotten
on the treadmill, turned it on, and flew into the wall!! We got him an exercise bike yesterday. It should be beneficial as
he works to get his muscles back - and safe :-)
B'Lynn
09 August 2006
We have had a rough weekend and week thus far. Stefan's platelets went down to 41 on Thursday but Children's never called
so we didn't know until Friday. Then we couldn't get ahold of the doctors to see if we should stop the Temodar (chemo). We
stopped it anyway - right decision according to Dr. Packer today. Saturday he had a 2 1/2 hour MRI/MRS/Gradient Echo. He had
a headache and vomited on the way to Children's. We had trouble getting his labs drawn before the MRI because the lab refused
to do it until they opened at 10. They are supposed to do STAT labs ASAP but I guess they didn't feel like it. Then he was
jabbed 4 times in an attempt to get a needle in. Gheez! What a horrible day! His platelets had fallen to 27 on Saturday. I
brought the scan home with me and viewed it. It appears to me that this monster has migrated to his right side of the brain
in addition to becoming larger on his left. We won't see the official READ until tomorrow but Dr. Packer called today and
said it was worse. he said we will have some decisions to make and none of them are good. As of Monday his platelets were
22 and yesterday they had crashed down to 21. anything 20 and below and brain tumor patients run the risk of spontaneous bleeding
in their brain. It has been a tad stressful to say the least. As far as Stefan is doing, he is slightly weaker and a tad off
balance but happy and laughing. His right eye seems to want to cross whenever he looks to the left. But he still reads, does
his math workbook, and has been enjoying his new playstation 2. He is looking forward to getting better so that he can
run again - hopefully before the Thanksgiving Turkey Trot this year. He had a rough time last week as well when his favorite
Great Grandpa "Bob" passed on. Bob was very special to our family and to everyone and we miss him terribly. Stefan was particularly
close to him and took the news quite hard - cried, and went to his room to say some prayers for Bob to have a safe journey.
We have to go to Children's tomorrow for exam and consultation. I'll try to let you know the next step. In the meantime, Stefan
has started the Ruta-6/CalcPhos treatment that you can learn more about on the 2 links below. It looks VERY promising
but isn't fast acting. I am in touch with other people using it and many are getting stable results thus far. If anyone has
any time to research please feel free to and let me know your opinions. I am running out of energy rapidly lately. The
things we need to research are Thalidomide (not how it was used in the 60's but how it is being used in cancer), CPT-11 and
pediatric cancer, Laetrile and good Mexican clinics - ones that can back up what they do with results. Tomorrow will be a
tough day.
Please keep praying for Stefan and our family.
24 July 2006
Hello Friends and Family! Been a while - so sorry about that. After reclaiming good blood
counts Stefan started to decline neurologically - he developed ataxia again, right sided facial droopiness, etc. We had to
start him on 4 Mg decadron again so now we have the horrible side effects of the steroid. We had an ER visit on July 10 and
an MRI was done. It appears the tumor is expanding in the left temporal lobe and growing new growth near the brain stem. All
this while on the Temodar - not good. We went to Duke July 12 and that was relatively unproductive. Both Garth and I were
quite disappointed. We now have 4 alternative treatment regiments to consider if the next MRI on August 5th shows additional
growth.
On the up side - Stefan is very stubborn about moving forward with his exercise regime. He
gets on his bike, falls from balance problems, gets up and keeps trying. He has batting practice in the back yard, and
he is gearing up for a 10K fun run coming up next month. His little legs hurt so bad last night he had to soak in the tub
of warm water. The decadron causes muscle wasting (breakdown) rapidly in him, and muscle weakness. So while he is working
so hard to increase his muscle mass the steroid is working hard to remove the muscles.
He has been attending the teen center at the library on Friday nights and having some fun.
Yesterday, he went to visit an old friend Mona. She is a boxer (dog) that he used to chase around the neighborhood. I
guess she remembered him because he said she wouldn't quite licking his feet! We are seeking large print books for him to
read until his vision gets back to normal. If any one knows of a good place to order them please let us know. He wants to
read but has a very difficult time with regular print with this double vision. We reviewed pre-algebra last week gearing up
for catching up on our schooling and he sailed through the review. Thank goodness for smart kids and Cobb County education!
I have many pictures to put up here but verizon doesn't allow the space. So we are planning to get our own domain name soon
and move this over there. We'll keep y'all updated. Hope summer is going well for everyone - too fast up here! Next MRI is
August 5th - please pray for good results.
B'Lynn
28 June 2006
Hey Y'all. Sorry we haven't updated. We have been going nuts with the blood counts. 2
weeks ago Stefan's platelets crashed and he had to have a transfusion. The next day he had a severe headache and vomiting
so we were in the ER most of the day. We finally got his platelets up last week and his immune system crashed. So he/we have
been in isolation until Monday. We rechecked his counts on Monday and his immune system is back and running, but now his platelets
are way too high. Argh! We have to go to Children's again tomorrow. The dose of his Temodar is changing to help prevent the
toxicity on his bone marrow. If all is well tomorrow we will start a daily dose (yup, every single day) of 100 Mg Temodar.
We should also be able to get completely off the decadron. Yay! No more side effects! Susan, the general manager of Chuck-E-Cheese
at Dulles, called yesterday to invite Stefan to bring some friends and check out the new store before it opens to the public
this weekend. He is very excited!! Wish us well tomorrow! Oh - Did I mention Stefan was out bike riding last week??? He
is an amazing little guy! B'Lynn
15 June 2006
Hey all. We just returned from Children's for the first hands
on check up in 3 weeks. The docs were all in Japan for a symposium and all but 1, Dr. MacDonald, is back. Last Thursday Stefan
had a bad, progressing headache with vomiting and we had to postpone his weekly bloodwork until Friday. We received the results
on Monday and his platelet count had crashed from 390,000 the previous week to 95,000. Anything lower than 140K is LOW
and puts him on alert status. This mornings platelet count was down to 14K - Danger zone for a brain tumor patient. Dr. Packer
feared spontaneous intracranial bleeding. So we had to have our first platelet transfusion. It was a tough decision - would
rather have used my own platelets to avoid the risk of him being infected by who knows what but they would have had to screen
it and culture it for 24 to 48 hours and it would have been risky to wait. He was brave and strong and, although scared and
nervous, came through it with his huge smile intact! Yay Stefan! Now we wait - if the platelet count improves by monday we
can do the third round of Temodar on Tuesday. If it does not we wait. The nurses both said it is most likely the normal delayed
reaction to the Temodar. While other chemo medicines can show a decrease in platelet count within 10 days Temodar usually
hits a low at 3 weeks. It doesn't always happen so it may not next time. We wait. I have the final read on the MRI and it
is indeed as good as it looks. It shows regression of the tumor (shrinkage) in several areas. While it is still quite present
at least we know Stefan is having an affect on it. Thank you all for the continued prayers and positive energy. It seems to
be working :-)
BTW - Platelets are needed urgently by children going through chemo therapy and much
of the time it is in very low supply. This is new information to us. Every other baby and child we see on Thursday's has had
to have MANY platelet transfusions. Without them they would have to cancel their chemo and the tumor would not be treated.
Please consider donating platelets to your local hospital or Red Cross. Most children's hospitals use their own supplies and
only use Red Cross when they are out. Platelet transfusions are blood type specific and platelet donation takes a bit longer
than blood donation. It is so badly needed though. Even with my intense fear of needles Garth and I are going to start doing
this when we are at Children's on Thursdays to help the little guys and gals we meet who are trying so hard to fight off this
monster called Cancer.
10 June 2006
Good morning all our wonderful loved ones! We had the first MRI since starting treatment bright and
early this morning. It took almost 2 hours but the tech spent some extra time making sure to capture good images of his sinuses.
He has had 2 headaches this week and I want to ascertain whether his sinuses are inflamed or infected, etc. It is always so
much nicer when you are dealing with people who are friendly and caring. Sometimes that has not been the case. Today it was
the case. Last time we had to wait an additional 2 hours at Children's to get the MRI cd copied for us. Today it took less
than 5 minutes - so - yes - so far today is a wonderful day. I have viewed the cd and my non-doctor eyes see no progression.
In fact, to me it looks a bit less inflamed. However, we will eagerly await the return of the pediatric neuroradiologist so
that he can render his highly trained and expertise opinion. MRI reading is something that one has to be skilled
at for there are many things that are easy to miss or otherwise overlook. We have been blessed with a highly skilled
and very polite Persian radiologist who was the first to mention that he thought the progression may be a glioma. I hope he
views this MRI as well. The doctors have all been in Japan for the past week so we have not had our usual physical exam.
They will be returning slowly this week and we will meet at the usual place and time on Thursday. I have concerns about the
return of headaches, and he has complained of some positional dizziness as well. He continues to amaze me with his unrelenting
desire to hop back into his activities just like normal. He intends to go inline skating today and wants to pick out his new
bike. (Mommy is terrified of this!!!) His walking is getting more stable and he is looking ahead more than at the ground.
He still needs to build his endurance back - he can't walk for long distances without tiring. He played on the water slide
in the back yard on Wednesday night, and on Thursday he attended his 5th grade school picnic. He dunked one of the teachers
in the dunk tank - and got a metal. He fetched his yearbook and his classmates, his teachers and principal had signed it already.
They were quite happy to see Stefan up and about. He almost made it to the War Between The States club meeting but he developed
a severe headache and vomiting so we had to come home. Hopefully, this is just a response to some possible over exersion.
We still have the steroid counteracting much of the progress he makes. Stefan has been assigned 2 very nice wish granters
from the Make a Wish Foundation and they visited this week. Although he plans to wait a week and make sure about his wish,
his top wish so far is to record a Blues cd with a guitar player (Carlos Santana, Eric Clapton, B.B. King, Bonnie Raitt) dedicate
it to Melyssa Mae, and sell it to raise funds to find a cure for pediatric brain tumors. It's either that or a Tree House
-depending on the time of day. What a wonderful opportunity - to make a wish for anything in the world that you can think
of - and a difficult decision as well. The Make a wish Foundation is new to us but has been around for a while and it appears
has made a HUGE difference in the lives of children with life threatening illnesses. I'll include a link on the link page.
That's it, folks! Time to chase the baby - who started walking this week. Thank you all SO very much for the prayers and for
the thoughts on here. I read each to him and he smiles at every one. And the prayers must be working - God is listening -
cause my lil guy sure has been happy lately. God Bless :-)
May 31, 2006
Hey again! Today was a good day. Stefan is slowly regaining his appetite and played alot on
the floor with Melyssa Mae. No nausea, no headache today. Let's hope the rest of the week stays the same. Tomorrow we
go in for more blood work. So far so good.
B'Lynn
May 30, 2006
Stefan just wrapped up his second round of Temodar. It wasn't so nice to him this time. He has
had some headaches and some vomiting. His appetite has decreased quite a bit. We continue to try and wean off the decadron
to be rid of these nasty side effects. Our first post-treatment MRI is scheduled for June 10 - so we wait. His blood work
continues to come back amazingly good. Even while on the chemo his platelet count increased - one of the side effects of the
Temodar is falling platelet count, putting the kids at risk. We are thankful so far that we are well on all other counts.
Stefan was able to get on here and read his guestbook a few days ago - and even wrote an update. That was a first. He continues
to amaze me, this little guy, with his strength and his will power. Despite all he is going through he remains positive and
(most of the time!) good natured. He has enjoyed playing with Melyssa Mae on the floor quite a bit, is still working on walking
steadily, and has even been outside on the swing a few times. Thanks for all the continued prayers and thoughts. They are
certainly needed and greatly appreciated.
B'Lynn
May 10, 2006
When Ms. Judy (our physical therapist) arrived this morning Stefan greeted her at the door with
his walker. He had planned it all morning - and she was quite surprised! Yesterday he was up and about on his walker on 4
occasions. His legs are still quite weak and he has trouble rising and sitting but walking is getting much better. Yay Stefan!
He is working really hard. He is also sitting up to eat more and more rather than having to lie on his right side. Sitting
still hurts his spine if he does it for long but he is trying really hard to do it more. We decreased the decadron (steroid)
dosage on Monday from 4 MG per day to 2 MG per day. He has lost at least 1 lb of water weight from the decrease from last
week. I cannot wait until he is off of this medicine completely. The side effects are horrible! He saw his face in the mirror
on Monday for the first time since the side effects took hold and almost cried :-(
Monday Garth and I celebrated our second wedding anniversary. 2 years seems to have flown by
and all in the last 3 months! Stefan planned to make dinner for us all week, with the help of his siblings. He planned a menu
of tomato soup, grilled (soy) cheese sandwiches, and saltine crackers. Stefan was able to sit at the dining room table on
a very soft chair for about 10 minutes and he even managed to butter the bread. Victoria Rose participated by "testing" the
cheese and crackers to make sure they tasted good. It was delicious! One of the things that made me cry when we first
went to the hospital back on February 14th for severe headache and vomitting was that Stefan was so sad that he wasn't able
to make a special Valentine's breakfast for Mommy because we went to the hospital. He is such a special little guy in that
he always makes even to smallest of holidays very special.
We are all set to make the trek down to Atlanta this weekend. Stefan has prepared a restaurant
tour - complete with menu - for us as we travel. The decadron causes an insatiable apetite so he is always hungry! Good friends,
good Blues, and good BBQ - oh! and boiled peanuts! - what more does one need to boost the spirit? Wish us a safe trip - it
will be myself and the kids and a 13 hour trip.
Oh - Stefan was reading when I came in to his room this morning. He hasn't been able to read
since March 3rd. I am optimistic that these improvements will continue and I believe it is most likely because of the Iscador
( www.iscador.com) he is taking. Some of the other supplements I have been giving him are Essic Tea, Cat's Claw, and the Japanese mushroom
propriety blend AHCC. I'll make an information list on these when I get the time. Of course nothing would be possible without
God and we are grateful for all the prayers that our family and friends continue to pray for Stefan's healing. Please
keep them coming :-) B'Lynn
May 05
Jessica has been studying all week so I will take this opportunity to add an update. We have
had a relatively good week. Stefan has been using his walker to get around a bit. He has difficulty rising and sitting due
to the muscle wasting in his legs caused by the decadron (steroid). He has been working on rebuilding the muscles but until
he is off the decadron completely he will not be able to be at 100%. Some other side effects of the decadron started earlier
in the week - beginning of a mustache and underarm hair, facial rash, and a distended abdomen. While uncomfortable, they won't
be permanent, thank goodness. His spirits continue to be high and he sure is a strong little guy! No matter what he has been
going through or how many blood tests he gets pricked for or how many pills he has to down each day he does it with minimal
fussing - much better than I ever would!! I had some concern about his blood counts due to the chemo. It can destroy the immune
system, lower platlets, and put him at great risk for catching normal infections which could turn life-threatening for him.
He had his first blood cbc yesterday after the chemo and all counts are "perfect". I guess the mistletoe extract and the AHCC
are working. We still have to do weekly lab work but Stefan asked his doctors last week - Dr. Meanie and Dr. Rood - yes,
their real names, "Why the heck can't I just go to LabCorp and do the bloodwork and they can send it to you?" Dr. Rood said
he could. So, we only have to make the 2 hour drive down to Children's Hospital in D.C. every other week. Yay Stefan!
We plan to plant Stefan's green bean garden this weekend. It is his annual ritual. He can't
tolerate the sun or heat yet so we will be planting in a location he can view from inside.
Stefan received many phone calls from friends and family in Atlanta this week and made some
new friends locally as well. A wonderful new friend with an awesome voice came by and played guitar and sang for
Stefan. It was a delight to us all! It always seems to brighten his mood to know he is thought about and to see friends
his own age. We are still planning a trip to Atlanta for the Blues bash at Rexx's ( www.xxblues.com) on the 13th if he is able. He received the latest cd from Larry Griffith, Atlanta musician/songwriter and
rep for the 2005 Blues Challenge, this week and has been listening and singing along. His phone call from Motor City
Josh ( www.motorcityjosh.com) near his birthday sure brought a smile to his face as well. oops! Baby awake - Gotta run. Til next time - keep us in your
thoughts and prayers. Many thanks, B'Lynn
4/29/06
Stefan has been taking a nausea medicine called Kytril because of the Chemo. We were able to get a prescription for Iscador-
a mistletoe extract that is used extensively throughout Europe and Asia for the treatment of cancer, tumors and HIV. Mommy
got prescription information from one of the German pediatric oncologists. You can find out more about Iscador at http://www.iscador.com. ~Jessica
4/26/06
Stefan started Chemo therapy last night. We're very fortunate we are able to take a new drug just approved by the FDA
called Temodar. It made him throw up. Most kids who take it throw up within six hours of taking it, but Stefan threw up 6
hours later.
~Jessica
4/20/06
Stefan had a lot of fun today going to Chuck E. Cheese for his 11th birthday. He felt sick for a little bit, but was
soon able to play a few games!
Thanks to everyone who showed up and helped him have fun.
~Jessica
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