Tuesday, December 9, 2003 9:59 PM CST

Death is Nothing at all
Death is nothing at all
I have only slipped away into the next room
I am I and you are you
whatever we were to each other
that we still are
call me by my old familiar name
speak to me in the easy way
which you always used
put no difference in your tone
wear no forced air of solemnity or sorrow
laugh as we always laughed
at the little jokes we enjoyed together
pray smile, think of me, pray for me
Let my name be ever the household word
that it always was
Let it be spoken without effort
without the trace of a shadow in it
Life means all that it ever meant
it is the same as it ever was
there is unbroken continuity
why should I be out of mind
because I am out of sight?
I am waiting for you
somewhere very near
just around the corner
All is well

Henry Scott Holland
(1847-1918) Canon of St Paul's Cathedral

Wednesday, November 19, 2003 0:05 AM CST

Don't Weep For Me
Do not stand at my grave and weep,
I am not there, I do not sleep.
I am a thousand winds that blow,
I am the diamond glint on snow.
I am the sun on ripened grain,
I am the gentle autumn rain.

When you awaken in the morning's hush,
I am the swift uplifting rush
of quiet birds in circled flight,
I am the stars that shine at night.

Do not stand at my grave and cry,
I am not there, I did not die.
by anonymous

God grant us such strength in the memory of our loved one that we might be thankful for the gift of life that is given to each of us, and in our God grant us such strength in the memory of our loved one that we might be thankful for the gift of life that is given to each of us, and in our hearts, may the loss of our loved one be balanced by thanksgiving for the life that was shared with us. Amen.
Heavenly lights.homestead.com


To all of my wonderful friends, Have a Happy, Healthy Thanksgiving....
Love,
Patty
Mom To Sean
Forever in My Heart

Wednesday, November 5, 2003 9:38 AM CST

Not much is going on. We made it through Sean's 24th Birthday and Halloween. Now we face the holidays. I am trying very hard to only remember the good times but some days all the horror from the past 6 years floods my brain and leaves me questioning everything.
I am trying to believe that the anticipation of the holidays is probably going to be worse than the actual days themselves. I guess this too shall pass.
Thanks to all who still sign the guestbook and continue to check in on us. You amaze me.....
Please pray for a fellow rhabdo friend of mine, Dana, who is beginning to wear down from this devastating beast. She is a true hero and one of the bravest women I know.
Love to you and your families,
Patty
Mom to Sean, 09/28/79 - 04/13/03
My Braveheart

Sunday, September 28, 2003 10:40 AM CDT

Happy Birthday to You,
Happy Birthday to You,
Happy Birthday Dear Sean,
Happy Birthday to You......
I'm having trouble today understanding how one of the Happiest days of my life has turned into one of the saddest. I pray you are having a wonderful party in heaven today with all of the other angels and know how much we are all missing you and love you.
We are bringing 100 fall decorated pumpkins to the cemetery today to place on graves that have been somewhat abandoned by their appearance, in honor of your Birthday. Vanessa, your sisters, and brother stayed up till 2:00 am gluing flowers and leaves on them. Not sure how the caretaker is going to react on Monday morning when he sees them but .....Knowing how much you loved Halloween, we thought you would really enjoy it.
I Love You Forever.......... My Hero, My Braveheart, My Son,
Mom

Tuesday, September 9, 2003 9:11 PM CDT

Hello, and Thank You to all who still sign our guestbook and remember us in prayer. I am so very touched by your interest and care.
On Sept. 4th I visited Mrsstan in Bernie, Missouri! For those of you who may not know her, she also lost her wonderful, heroic daughter, Sabrina, on March 17th, to Rhabdomyosarcoma. Sabrina and Sean seemed to have a contest at times in relapsing. First Sabrina, then Sean, then Sabrina, then Sean and on and on it went. The two of them had a lot of dark humor going on as to whose turn it was etc. Little did we know they would leave us within 27 days of each other. I know our dear, heroic angels are together watching over us.
Getting back to Missouri... I spent 4 days there and had the best time ever. I met Samantha, Cathy's other beautiful daughter. She is such a sweetheart! We visited Cathy's Mom and Dad, and her in-laws. Her sister-in-law and brother-in-law, Shelia and Donny, joined us. We went antique shopping, out to dinner at a Mexican restaurant, to her Mom & Dad's for dinner, and to Bingo! I saw Sabrina's Garden which is just gorgeous and in full bloom. But mostly we talked, and talked and talked! And laughed and laughed. Cathy cooked some wonderful new recipes and taught me about "Southern Hospitality." (And Katydids, Armadillos (Yikes!), and stickburs!) We had some good laughs over each others accents and just life in general. Her and Jim's family were so welcoming and acted like I was a part of them. I even got to sleep with Vito! (get your minds out of the gutter, Vito is her daushound). He and Titus are the sweetest little dogs, as is Caesar, her "outside" dog.
I can't thank her and Jim enough for a wonderful 4 days, that I will remember and treasure always. She has promised to come East in a few months so I can return her hospitality!
With our children passing away so close, we were able to talk about things we could never discuss with anyone else and my heart seemed a little lighter for those few days.
Please check out Sabrina's caringbridge site http://www.caringbridge.com/mo/sabrina/index.htm
and sign her guestbook too. She is another Hero of mine!!!!
Speaking of Heros,
Sending prayers to your and yours and all the Hero's of 9/11 on their second anniversary. May our troops come home soon.
God Bless America,
Much Love,
Patty

Wednesday, July 23, 2003 8:22 PM CDT

Hello all,
Thank you so much for still signing Sean's guestbook.
Not much to write about anymore. I miss my son more than words can ever tell. It feels like so much longer than 3 months since I hugged him and kissed him good-bye. He was one of the lights of my life and is so sadly missed.
I'm searching for something to take up my time. Strange how Cancer ruled my every waking minute. I never realized the time and effort I put into it until now. My first conscious though upon waking is, "Do we have to go to Sloan Kettering today?" Then reality floods my brain and I remember. No more trips into the city. No more Sloan Kettering....
So, I find myself searching for something to do with all this time I have on my hands now..... Of course I could clean the house (nah!!) or garden (Ugh!) or watch 100 movies over and over again (which I do)! If I catch myself watching Legally Blonde one more time, I'm going to send myself to my room!!!
Now that I've brightened your day, I'll close with much love and prayers for all who have continued to sign our guestbook even when I haven't updated. Thank you, thank you, thank you..... I am looking forward to the day I can update with some real news or events in my life worth writing about. Please stay tuned.................
Love,
Patty
Mom to Sean Forever
I will choose my flights carefully-but where might I go?

Friday, May 30, 2003 11:38 PM CDT

Thanks to so many who have signed Sean's guestbook. I am in awe of so many people who I have never met or have never even spoken to that know of Sean's Battle with Cancer. Your support is awesome.
My youngest son will be graduating from High School on June 12. The last baby in the nest. Yikes! Where does the time go???? I am happy for him, it has been a long hard struggle for him and I can't wait to get a picture of him with that diploma! As much as I have nagged him, he doesn't want to start college yet. Basically because he is going to be a Rock Star! Hey, stranger things have happened!
Things are a little weird here. Suddenly the house is too big and very often too quiet..... I have tons of idle time with no more clinic visits, tests, etc. I'm trying to remember what I did with my time before September 17, 1997. It seems my grief is beginning to switch between depression and a sort of manic state. And I'm never sure which one you will be talking to. My poor co-workers walk around me on tiptoe, never knowing who came to work today!
Vanessa visits on weekends and we just hang out most times. Her sorrow is so deep my heart just breaks for her.
The constant rainy and still chilly days in NJ are also not helping the situation. It has rained here for weeks.
Thank you again to all for your support and kind words.
As the Priest said at Sean's Wedding and 11 days later at his Funeral:
May the road rise to meet you,
May the wind be always at your back
May the sun shine warm upon your face,
The rains fall soft upon your fields
And until we meet again
May God hold you in the hollow of His hand.
Love,
Patty
Mom to Sean 09/28/79 - 04/13/03

Tuesday, April 29, 2003 0:16 AM CDT

I look forward to the day when images of my son's life are no longer associated with the event of his death. Anon.

Grieving is my whole agenda for a while, I give it my endless attention....
I am watching for a sign that he is OK. But so far nothing. I have heard that some Moms experience a rose in winter or a singing bird or cutesy bug appear out of nowhere. Not here though, not even a dream....
I returned to work today (not that I wanted to). And it was a little better than I expected. Being out 28 days has left me enough work to keep me pretty busy for a while.
Thank you all for your kind words and sympathies. They certainly have helped. I will try to update this site more often. Although not a lot to talk about anymore....
Love to all of you,
Patty

Sunday, April 13, 2003 3:46 PM CDT

The Wake and Funeral are over and I'm not sure what I am supposed to do right now.
Love,
Patty

Monday, April 7, 2003 9:25 AM CDT

Hi This is Patty's friend again. She asked me to put an update on here for her. They are going home today! They will have in home nursing as needed and I think they will all be glad to be home again and out of that hospital. They are trying to beat a snowstorm that is moving in today so hopefully the hospital won't be to slow in getting them out of there. Sean's condition hasn't changed alot other than he is retaining fluids pretty bad. So far nothing has been able to get rid of the fluids but he is getting lasix so hopefully that will kick in and at least help some. Other than that he is still up and around and feeling fairly good considering all things.

Most of you know that Sean and Vanessa were married Saturday in the hospital chapel (congrats again guys!). Here is what Patty wrote about the wedding:

Last Thursday, In light of Sean's latest circumstances, he and Vanessa decided to get married immediately. So after unbelievable running around and total cooperation from everyone, including the hospital and the City of NY, Today was the big day.
One of the most beautiful, bittersweet weddings I have ever attended. Sloan Kettering provided the chapel, flowers, music, Sean's tuxedo (he was gorgeous) and cake. Vanessa's Mom found a wedding gown and veil at 8:30 PM last night at David's bridal, that fit her like a glove. 7:00 PM last night she found a jewelry store a few blocks from the hospital and bought the rings. She was breathtaking! We had two catholic priests that performed the legal ceremony (Yep, the city of NY sent a woman from the vital statistics office to Sean's hospital room to do the paperwork). I don't think we could have had a more beautiful wedding had we planned it for a year. What a day it was.......The GOOD OL' Sloan 5th floor nurses, set up a Honeymoon suite (I swear to GOD!) pushed together two hospital beds IN ANOTHER ROOM, complete with balloons, flowers and even Hershey kisses on their pillows! To top it off I get to sleep in Sean's REAL BED in his original hospital room. No chair bed tonight...

I'm sure that Patty will update in a few days after she's recooped from living in the hospital. This family still needs your prayers in a huge way. When you are going through what they are going through it is sometimes very hard to pray....that's where the prayers of others comes in and helps to lift them up.

Please sign their guestbook so they can know that you are keeping up with them and holding them close.

Tuesday, April 1, 2003 1:50 PM CST

This is a friend of Patty's posting for her. It is with a very heavy heart that I have to post this. Patty called today and said that there is now tumor around Sean's heart and the Dr's have told them that Sean only has 2 days to 2 weeks left here with us. Patty will update with more details when she is able. Please pray hard for the family. They will need us all now in a very big way.

Wednesday, March 12, 2003 5:44 PM CST

Today turned out to be a real roller-coaster day! Sean had to go to the local Sloan Kettering (an outpost in Denville, NJ) to have a CBC done to see how his counts were doing since his chemo last week. They told him that his white counts were low, his reds where a little bit low and his platelets were 19,000 (norm is 160,000-210,000). Yikes! So while I called Sloan NYC to tell them, He and Mike drove there for him to get platelet transfusions. They got there and of course re-tested his blood, only to find out that the original one was totally wrong and his platelets were really 45,000 not 19,000. So he didn't need the transfusion after all. While there his onc decided to have him get a chest x-ray as he was complaining about pain there. After the chest x-ray he calls Sean into his office and tells him to go get his father and meet him in the other conference room that has a wide screen x-ray viewer. At this point he and Mike are ready to faint thinking the tumors have grown or something else is really wrong. So they go into the conference room. As it turns out, Sean's xray this week is much, much better than the one he had two weeks ago, thus showing that the new chemo IS WORKING!!!!!Mike said you could actually see the old x-ray had what looked like fuzz all over his lung and the new one looked clear with no fuzz. I am afraid to get too excited about this as we have been through it so many times before. But really I am. At least for today (and maybe tomorrow)!
Thank you all so much for signing Sean's guestbook! So many wonderful people out there have sent prayers and good wishes. It just warms my heart! You guys are the GREATEST!
Please continue remembering us in your prayers.

Happiness lives for those who cry, those who hurt, those who have searched, and those who tried, for only they can appreciate the importance of people who have touched their lives.

Love,
Patty

Thursday, February 20, 2003 1:20 PM CST

Hope everyone has survived the "Blizzard of 2003". Where is that damn ground hog when you need him?
Happy belated Valentine's Day! We had a very nice one that had Sean cooking dinner for Vanessa. Made his own concoction called Chicken Cutlet Lasagna. I was very impressed with him even cooking it no less that it was really delicious! We all had dinner together and my daughters came over for a visit later that evening. Kelly
brought "Bubba" my almost grandchild over. He is so adorable! If you can call a pug "adorable". Oh what a face!
On to business, Sean completed his third round of Vinorelbine and is doing pretty well. He had an xray on Tuesday and the tumor is stable at this time. So, hopefully
the next few rounds of chime will begin shrinking and getting rid of it FOR GOOD. His side effects have been minimal with really only a drop in blood counts which rebounded pretty quickly last week.
Not much else is new here. Vanessa is keeping Sean busy with registering at dept. stores and checking out wedding stuff. They are so cute together picking out housewares etc. They were sure made for each other!
Please continue to keep us in your prayers as we do you.
Love,
Patty

Thursday, February 6, 2003 11:46 PM CST

I almost forgot, could you all please send some special prayers for a dear friend of mine's daughter Sabrina! Her Mom, Cathy, and I have become fast friends and help each other over the bumps in the road. In my excitment of entering the news about Sean's engagement I forgot to add this. Sabrina and Sean have been playing Rhabdo Catch Up for the past 4 years. She is at the same point in treatment as he is right now and is not feeling so great. She too has a Caringbridge page http://www.caringbridge.com/mo/sabrina/index.htm that you might want to check out. Another HERO of mine.

Sorry for the delay and all the suspense!
SEAN AND VANESSA HAVE GOTTEN ENGAGED!
Yippy Skippy, we are all just thrilled! He bought her a beautiful diamond ring and popped the question on Jan. 31st. For those of you who have already heard about this, I thank you for keeping it a secret and not posting a reply here. I was panicking someone would forget and Vanessa would see it on this site. But fortunately all went well.
Sean started Chemo again last week with a new drug called vinorelbine (not sure how new it really is, but at least its one he hasn't had before). His side effects were minimal but his counts are taking the big plunge. He will have his second treatment of it this coming Thursday and then the following week off. Please keep us in you prayers that this helps out with no big side effect problems. Once again I thank you all for signing his guest book. It still awes me to see all of the new entries from so many people we don't even know.Your all the GREATEST!
Prayers to you and yours,
Love,
Patty

Wednesday, February 5, 2003 0:00 AM CST

Sorry for the delay and all the suspense!
SEAN AND VANESSA HAVE GOTTEN ENGAGED!
Yippy Skippy, we are all just thrilled! He bought her a beautiful diamond ring and popped the question on Jan. 31st. For those of you who have already heard about this, I thank you for keeping it a secret and not posting a reply here. I was panicking someone would forget and Vanessa would see it on this site. But fortunately all went well.
Sean started Chemo again last week with a new drug called vinorelbine (not sure how new it really is, but at least its one he hasn't had before). His side effects were minimal but his counts are taking the big plunge. He will have his second treatment of it this coming Thursday and then the following week off. Please keep us in you prayers that this helps out with no big side effect problems. Once again I thank you all for signing his guest book. It still awes me to see all of the new entries from so many people we don't even know.Your all the GREATEST!
Prayers to you and yours,
Love,
Patty

Thursday, January 30, 2003 at 06:37 PM (CST)

Wow, so many new entries in Sean's guest book! Thank you all so much for your support and prayers! This is just awesome. So many wonderful people that we have never met sending prayers, love and support! I am just astounded! And thank you to the regulars. I know it is hard to keep coming up with new things to say, but God Bless you all you do!
I have some really wonderful news (family news, not cancer news)! But I can't post it for a few days yet! It is a surprise!!! Have I got you wondering????? Ha, Ha, I bet you are! I promise to write a new update in a day or so telling you all about it! Until then....
All my love,
Patty

Saturday, January 04, 2003 at 10:20 PM (CST)

We hope everyone had a wonderful Christmas and is having a Happy, Healthy New Year. We had a very nice, quiet, snowy, Christmas. I can't believe the holidays are over already.
We were hoping that Sean would not have to return to the clinic for treatment until Jan. 14. This did not happen as he began having pain in his back (in the tumor area) and in the front left chest area. So, we returned to Dr. Wexler on Dec. 30th to find out through an x-ray that Sean's lung had filled up with fluid due to the tumor pressing on the base of it. The lung was so full of fluid that it was hardly opening up. Luckily, his other lung is fine and other than being a little short of breath after climbing the stairs, we noticed no signs of breathing problems at all. The surgeon took him into the procedure room and drained (tapped) the lung which helped with the pain in the front. We returned on Jan. 2nd for Sean to begin radiation treatments. He is scheduled for 10 treatments and the good news is they are using a special radiation machine that doesn't go deep into tissue, thus, the radiation will only eliminate the tumor and not touch his lung, which already had 30 radiation treatments in 1998. He has been in a lot of pain and I am hoping that the radiation will begin to shrink this beast soon. Seeing him in so much pain is one of the worst things I have ever experienced. How I wish I could take this pain from him or switch places.
Please remember Sean in your prayers. Also, please sign his guestbook, I know its difficult to keep coming up with things to write, but it means a lot to us just to see that you are keeping up with his progress.
Love to All,
Patty

Saturday, December 14, 2002 at 09:01 PM (CST)

After routine scans on Nov. 26th, we found out that Sean has yet again relapsed......
There are really no Chemo drugs for Rhabdomyosarcoma that he has not already had, but when we met with his oncologist we found there are still a few options. There is a drug called Vinorelbine that has been used in leukemia and now in sarcomas that looks promising. There are supposedly few side effects. There is also the possibility of radiation again and there is a study (experimental) of a drug called Gleevac beginning at Sloan in a few months. And the last option (not an option to me) of doing nothing and being treated as things develop. So now he has to decide in which direction he will go. I know he is not ready to give up yet and for this I am very grateful. Dr. Wexler feels he can hold off treatment until after the holidays. Of course should he begin to feel pain where the new tumors are, he must return to the clinic immediately.
At this point in time we are just hanging out and trying to take each day at a time and try to enjoy the holidays. At least they are a distraction.
Please sign our guestbook and have yourselves a Merry Little Christmas! As always, thank you for your support and kind words.
Love,
Patty

Wednesday, October 09, 2002 at 06:45 PM (CDT)

Wow, it has been quite a while since I updated Sean’s Webpage huh? Well, here it goes.

Sean finished chemotherapy in August. He is doing well and aside from hip pain (due to bone degeneration from the steroids in the chemo) he feels pretty well. It is very scary with no chemo as we have once again lost our safety net. Fortunately, Sean has begun a new maintenance program of low dose cytoxan (a chemo drug) and high dose celebrex (an arthritis drug that was found to block the blood flow to tumors). Theoretically, this combination should go after go after any cancer cells that decide to rear their ugly little heads again. Keep your fingers crossed that it works!

We had a very nice surprise about 2 weeks ago. A cancer Mom, friend of mine, has an Internet Soap and Candle business. She donates a percentage of her profits to Childhood Cancer Research. Well, she has named a candle after Sean! Sean’s Banana Nut Bread is the fragrance and it smells terrific! There is also a label on the candle that gives a brief history of Sean’s battle with cancer. All of her products are WONDERFUL and you might just want to check out her site for Christmas shopping. (http://www.anniesflowersandscents.com/). You won’t be disappointed!

I’d like to request some prayers for our dear friend Sabrina, she is having scans tomorrow and we are all praying that they will be clear and she can go on with a normal life! (Whatever that is!) http://www.caringbridge.com/mo/sabrina/index.htm

Please sign our guest book (it means so much to us!) and keep us in your prayers too!
Thanks for checking in...
Love,
Patty

Monday, August 12, 2002 at 05:43 PM (CDT)

Hello All from steamy NJ! It was 92 degrees today YIKES!

Well, Sean completed another round of Chemo, miraculously with no serious side affects. No fever or inpatient at least! His dose was cut down a little which helped out drastically. His counts are still a little low, so he may possibly have round #6 next Monday depending on how high they are.
We met with the radiologist and she feels radiation is not a good way to go. It seems the damage that can occur from it far out weighs the good it could do. She feels that Chemo is the way to go.
On most days his spirits are still strong, in fact, his nurse last week during his check up called him a cock-eyed optimist. She was commenting on how the summer was nearly over and how it was a shame he had so much trouble with side effects during it. He disagreed with her and said he really had a good summer, as he went to Ozzfest, a few concerts, the aquarium, Philadelphia for a weekend, etc., etc. She just walked out of the office shaking her head.... She said, "I guess he forgot about the 106 degree fever and pseudomonis episodes!"
Not much else is new, I think we have 2 rounds of Chemo left and then I am going to see about a maintenance program with a very low dose Chemo drug and celebrex. My friend Kathy's daughter Sabrina is on it and it looks quite promising. (Way to Go Sabrina, Good luck with college and your return to "normal" life)!
Please continue to remember us in your prayers and good thoughts! And Please sign the guest book!!!!!
Love,
Patty

Friday, July 12, 2002 at 06:14 PM (CDT)

In Sean's last update he had been hospitalized because of a very serious pseudomonos (Pneumonia). He was recently scheduled to have a PET scan to make sure the pneumonia was gone and a CAT scan to see if the chemotherapy was working. He had the scans last Wednesday. On Thursday, Dr. Wexler sent me an email that the PET scan was fine and he was waiting for the report on the CAT scan. On Friday he emailed me SCANS ARE FINE!!!!! We were thinking that he meant fine in that the pneumonia was gone (Duh). I didn't find out until Tuesday that he really meant THE SCANS ARE FINE!!!!! So Fine, that the PET scan did not even detect any tumor and the CAT scan showed it as much, much smaller than before. It is no longer sticking through his rib cage and no longer in the previously radiated field. So there is a possibility that he can have this area radiated.
We are thrilled beyond words. The first two rounds of the Ifosfamide and Etoposide had only kept the tumor at bay so I wasn't expecting such impressive results. But these last two rounds have "Kicked Some Rhabdo Butt"!
Soooooo, Sean is having his port put back in (#5) on Tuesday and will resume Chemo next week. He will hopefully do 2-3 more rounds.
I'm not sure if it was the Priest Faith Healer (He was AWESOME!) or prayer (Thank You, Thank You, Thank You) or just a stroke of good luck but whatever it is, it has me walking on sunshine!
On a sad note, please remember Justin Ford and his family in your prayers. Justin was a member of our little Rhabdo Rat Pack who to quote his Mom, "tiptoed quietly from his and his mother's bedside this morning to be with our Lord." He was an awesome boy with an awesome Mom. I will never forget what a Braveheart he was.
Once again, thank you for signing our guestbook and for your prayers, love and support. Please continue to remember us as we do you.
Love,
Patty
Courage is the power to let go of the familiar.
- Raymond Lindquist

Monday, June 17, 2002 at 11:13 AM (CDT)

Greetings from the Hotel California!
When last we left our heroic warrior he was staving off the dreaded monster called Neutropenia. (For the neophytes to this site, netropenia is a side effect of chemotherapy. It is very low, to no, red cell, white cell, and platelet counts.)
Little did we know that neutropenia was the least of our worries! A fever last Monday am brought us racing into the clinic. By noon they found gram positive and gram negative infections growing on his port. (Oopps, there goes another port.) He also had 2 types of Pneumonia. The more serious one,Pseudomonas Aeruginosa, strikes fear in the heart of oncologists (as per Dr. Wexler). I have done searches on this and keep fining sites that have it growing on fruits and vegetables. YUCK!
Anyway we were inpatient in the peds ICU from Monday to Friday and Friday transferred onto the regular pediatric floor. The resident onc told Sean this am that maybe another 3 days, but then he doesn't know how I can whine and nag! We're being held as prisoners in a postage stamp size room with a Hispanic 6 year old who has way to much energy for receiving chemo...
Like a cat with 9 lives my son has once again fooled the cancer gods (along with the help of 4 antibiotics, pain killers, g-shots, O2, etc., etc.) However, we may have to reconsider the treatment plan since the danger of these infections is always present. Reconsider to what, is the question, since we have run out of chemo drugs. But, one day at a time....
I ask for your prayers to another friend of ours, Sabrina,(also 3x Rhabdo Survivor) who has just finished chemo and is cancer-free. Please pray that she can return to college and a happy healthy life. She is quite a hero in my book!(http://www.caringbridge.com/mo/sabrina/index.htm)
And for Justin, and his family. May they find the strength to face this very difficult time. Although somewhat younger than Sean and Sabrina no less the hero ... (//www.caringbridge.com/ny/justintyler/)
Well, if you haven't fallen asleep with the ramblings of a Sloan Kettering prisoner, thanks for listening and May God Bless All of Us.
Love,
Patty
That which does not kill me only makes me stronger...

Sunday, June 09, 2002 at 01:26 AM (CDT)

Sean finished round 4 of Chemo last week. Although he is very neutropenic we are hoping he can squeak through this round like the last one with no fever or hospitalization. He still has a very hard time getting around due to decadron (steroid) damage (from previous chemos) to his hip joints. Not much can be done about it while he is still on Chemo. There are days he takes so much pain medication he can hardly stay awake. So, he has to take Ridelin to wake his butt up.... A vicious cycle. Ridelin is used to help hyperactive kids calm down and focus. In adults it revs you up. Still helps to focus though. Just ask Sean, he took one one day and spent 3 hours setting up his email address book. Hahaha, I think he has the addresses and phone numbers of every person he has ever met in his life.
He is due for scans next week and we will see how the ifosfamide and etoposide are working and if he should continue on them or switch to others. Dr. Wexler is also checking out a new drug for lung cancer called Iressa. Since Sean really doesn't have lung cancer but Rhabdomyosarcoma to the lung he has to check if this drug has been used on soft tissue sarcomas. Keep your fingers crossed! Supposedly no side effects with this new one either.
Oh, and before I forget, WE HAVE RUNNING WATER AGAIN! YIPPEE SKIPPY! The Taliban water tank has left my driveway and things are back to normal in that dept. You just don't appreciate the little things in life sometimes.
That's about it for now......
As always, please remember us in your prayers and I will do the same.
Love,
Patty
Mom to Sean, dx'd 12/12/97 rhabdomyosarcoma, etc., etc.,
"A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words."
---unknown

Saturday, May 11, 2002 at 12:08 AM (CDT)

Yippee Skippy!!! We made it through the last round of chemo with no fevers or hospital stays. I guess the decrease in dosage definitely helped with the side effects. Now lets hope that it is working on the tumors. Sean is feeling pretty good other than the leg pain and even went to see Spiderman at the movies tonight.
The well drillers finally showed up and have drilled for 3 days. They hit a "gusher" yesterday at 290 feet. So with any luck by the middle of next week we should have running water again! You just don't appreciate the small things in life, until you lose them. It will be so great not having to drag around buckets of water.
Thanks to all for your support and prayers. I am not sure when the next round of chemo will begin but will update when I can.
Love,
Patty

Sunday, April 28, 2002 at 08:23 PM (CDT)

After Sean's last episode of neutropenia he had about 2 weeks off from treatment. We discussed with Dr. Wexler any treatment options that were left and decided to stay with the ifosfamide and etoposide at a 25% dose reduction. If you remember from the last update, his tumor remained the same, (no smaller yet no bigger) so we are continuing 2 more rounds to see if there is tumor reduction this time. I think Dr. Wexler felt two rounds were not enough to judge the effectiveness of the drugs, so we will take this route for now.
Sean's leg pain became so severe last week that FINALLY, oncology decided to search for a cause. I know more tumor was on everyone's mind. After 5 hours of MRI's, it was revealed that Sean has pretty severe hip joint degeneration from all of the steroids he was given during his chemo. I am still waiting for pain management to get back to us on their ideas.
Because of all of the above, chemo was delayed until Thursday, so we had to be inpatient from Friday night until tonight. The clinic is closed on weekend. It wasn't too bad since it was only 2 days and the relief of not fighting traffic was worth it. So we came home this evening with the backpack full of Mesna (kidney protection drug) and round 3 under our belts.
"Our" like it was me here! Duh! Now we have a glorious 2 days off before returning to clinic on Wednesday. At that time Sean's counts will drop and then the real fun begins.... UGH
Don't know if I mentioned it before, but my coworkers (priests, bookkeeper & music director) and some frineds/parishioners of Holy Spirit Church all chipped in and bought Sean a gorgeous HP laptop. He is just thrilled with it. Now when we are inpatient we watch DVD's and take turns on it. It really helps the time go by faster.
That's about it for this update, as usual, please keep us in your prayers.
Love,
Patty

Thursday, April 04, 2002 at 09:18 PM (CST)

At the last journal entry we left the Boyles with Sean getting ready to bottom out on his blood counts and the family high and dry with no water in the well. Well, well, get ready for this new action packed chapter in the never ending saga of the Perils of Patty B!
On March 28th I took Sean to the clinic with a slight fever. About an hour after we arrived his fever shot up to 105.6! YIKES! They immediately rushed him to a small back room and did emergency surgery to remove his port. He had all the symptoms of a port infection. His fever dropped to about 103 and over the next few days gradually returned to normal yesterday. However, (always a however) On Saturday, Sean stopped peeing. They guessed it was probably due to the high fever that he had temporary kidney damage. He was cathed until last night and seems to be returning to normal. He also had a cat scan yesterday that showed the tumor is the same. The last two rounds of torturous chemo seemed to stop the tumor from growing but did not lessen it in size. So we are back at square one looking for other drugs to try. It happens that the port was not infected so they are not sure what caused this high fever and I guess feel its too dangerous to continue on these drugs when there was no change in the tumor. We have an appointment on Monday to decide what to try next. On the bright side, His bone scan was still clean.
It is so good to be home! Even if it is rather dry....
Please remember us and the oncs in your prayers that we can come up with a new plan.
Love to you all,
Patty

Monday, March 25, 2002 at 08:46 PM (CST)

Sean finished another round of chemo last Friday. Although this round seemed a little tougher all in all he did OK. Now the counts are dropping and the real fun begins. Let's just say he has to go for blood tomorrow and I will have a bag packed in the car just in case we become guests of the "Hotel California" again.
Aside from my well going dry (bad drought in these parts), my furnace breaking down because no water from well going dry, and cable on TV screwed up for 2 days, things are just ducky in the Boyle household. Valium Take Me Away!
Love to all,
Patty
P.S. Please keep signing our guestbook. I know it becomes a drag saying the same old things, but we love it anyway!!! :)

Monday, March 04, 2002 at 09:40 PM (CST)

It's been a long time since I updated, so here goes...
Sean began chemo again from Feb. 25 thru March 1. The chemo had to run 3 hours each day with another 9 hours of mesna (a drug that protects your bladder) following it. We spent many, many hours in Sloan NYC that week! Last Thursday he had to go there for platelets and blood. About 1/2 hour into the platelets he began to have a reaction to them. His whole body was shaking, he spiked a 104 degree fever, and his heart rate began jumping up and down. The nurses in the clinic were wonderful... you forget how good they are until something like that happens.
Of course he had to be admitted. So from last Thursday until tonight we were guests of the Hotel California (You can check out anytime you like, but you can never leave!). UGH!!!!
Although his counts are still very low we were allowed to come home since they will be rising shortly.
He is feeling better but not happy that his hair is beginning to fall out again... Oh well, the bald look is in for guys anyway, right?
He is so strong, I can't help but admire him. (OK, so maybe I'm a little prejudice!) He takes it all with a grain of salt and just trudges along. His courage makes me proud, I don't know where he gets his strength from. He unknowingly carries me through my darkest moments.
Please keep him in your prayers,
Patty

Friday February 15, 2002 4:37 PM CST

Sean had his port put back in today. The surgery went well. He is really zonked by the anesthesia and snoring away as I write this.
He begins chemo on Monday. He will receive etoposide and ifosfomide for 5 days and then have 2 weeks off. He has had these drugs before and they are pretty potent. Hopefully, they will work as well as they did the first time and kill these tumors.
We also received some very good news in that Sean's bone scans done last Wednesday were clear and show no evidence of any bony metastases.
Thank you all for your support and prayers, they help me get through the day....
Love,
Patty

Friday February 15, 2002 4:37 PM CST

Sean had his port put back in today. The surgery went well. He is really zonked by the anesthesia and snoring away as I write this.
He begins chemo on Monday. He will receive etoposide and ifosfomide for 5 days and then have 2 weeks off. He has had these drugs before and they are pretty potent. Hopefully, they will work as well as they did the first time and kill these tumors.
We also received some very good news in that Sean's bone scans done last Wednesday were clear and show no evidence of any bony metastases.
Thank you all for your support and prayers, they help me get through the day....
Love,
Patty

Tuesday February 5, 2002 6:03 PM CST

My Dear Family and Friends,
Once again Rhabdomyosarcoma has ripped the rug out from under us. As many of you know, Sean relapsed again on 2/04/02. We returned to Dr. Wexler today to discuss Sean's present predicament. He laid out every option, drug and treatment plan that is available. He even told Sean he could decide when he wished to begin treatment should he choose that option. There are no longer any stats or cure rates. We are flying by the seat of our pants, no matter what we choose. The MRI showed 2 small tumors on the back of his lung, and one larger one running along the base of the lung and up through the rib. There are also a few spots that they are not sure about that may be lymph nodes or just his lymphedema (excess fluid build up). The pediatric surgeon does not want to do surgery. (What a guy!)
Sean then met privately with Dr. Wexler. I was half expecting him to come out and say he wanted to wait a month to begin treatment since he is still feeling no effects of the cancer yet. Much to my surprise he came out of Dr. Wexler's office with plans for his port to be put back in and treatment to resume(My Hero).
Although thoughts of a cure and living happily ever after are still floating around somewhere in my scattered brain matter, I will settle for buying time at this point. Thank you God, Thank you Dr. Wexler, but most of all Thank you Sean.
Love,
Patty

Wednesday, December 05, 2001 at 07:32 PM (CST)

Been a long time since I updated!
Time sure flies when your having fun.... Tomorrow is the big day.... DEPORTATION!!!
A part of me is thrilled and a part is scared.
Sean is also beginning a new preventative therapy. It involves a nebulizer and a drug called leukine which is similar to GCSF shots. The theory is that the white cells in his lungs become more numerous and look for any foreign things coming in. There is supposed to be few side effects (haven't I heard that somewhere before?)and the treatment will be twice a day for a week then a week off and then repeated for 6 months.
He is still having lymphodema treatments for his "Fat" arm and we will be returning for another visit to the alternative Dr. on the 17th.
Please keep us in your prayers and know you are all in ours.
Love,
Patty
I try to take one day at a time, but sometimes several days attack me all at once.
-Jennifer Unlimited-

Monday, September 24, 2001 at 09:09 PM (CDT)

Tomorrow begins the last week of Sean's chemo..... He will have his last treatment on Friday which is also his 22nd Birthday!
Yikes! I'm not sure which is worse, the first day of chemo or the last....
Sean's tumor was tested, and is negative, for GD2 expression, so the antibody study we were hoping to get him into will not be an option. We will be seeing Dr. Raymond Chang, who currently serves as Medical Director of the Meridian Group, an alternative medical practice devoted to the integration of traditional Asian healing with conventional medicine in the difficult areas of cancer, fertility, hepatitis, and other refractory or complex medical problems. The clinic is an affiliate of the non-profit Institute of East-West Medicine and is advised by a distinguished Board of senior physicians and researchers.
It's not the maintenance plan I had hoped for but it is better than nothing.
Please keep us in your prayers. Thank you to all who have remembered us and kept up with Sean's progress during the past 10 months.
GOD BLESS AMERICA...
Love,
Patty

Thursday, August 23, 2001 at 09:30 PM (CDT)

Sean was to begin round #11 (of 12) of Irinotecan last Monday. But! (always a BUT) his liver counts were high and most of his other counts were either a little high or a little low, so the chemo was canceled. We will try again on Monday. He still has FAT ARM Syndrome but onc really thinks its lymphodemia and is consulting with some Dr. in Sweden about it. Gee, sure hope we don't have to go to Sweden for a consult (LOL)
I asked his onc were there any maintenance plans when he finishes chemo. Much to my surprise he has some! He is has asked one of Sloan's research laboratories to study, if possible, Sean's lung tumor nodule for its expression of a glycoprotein, GD2 which, if possible, would make him eligible for treatment on an antibody study. This is a study that uses an antibody against an antibody that recognizes GD2; there has been evidence of an immune response against the antibody in some patients treated thus far on this study.
Now there is a lot of ifs and possibles in this statement, so please remember him in your prayers that this could work out.
He also gave me the name of a a colleague of his, who is trained in both Eastern and Western medicine, for complementary and alternative medical approaches. How about that????? Can you believe it Oncology meets alternative medicine???????
So needless to say, I am very happy this week! I had visions of sitting around waiting for another tumor to pop for the rest of our lives and here Good ole' Dr. Wexler has a PLAN......
Love you all,
Patty

Tuesday, July 17, 2001 at 10:01 PM (CDT)

Sean's left arm (the bad side) had been bothering him for a few days. He said he felt like he had a pulled muscle. About a week ago his arm swelled up and became more painful. So after bringing it to his onc's attention he had an MRA (not an MRI) which showed a blood clot on his shoulder. He was placed on meds to dissolve the clot. I came to find out the next day that this clot has been on his shoulder since his first surgery nearly fours ago. Why it would suddnely cause problems has the drs. baffled. Sean's onc feels it may be from a needle stick about 3 weeks ago that left his hand very bruised. He is also checking with a specialist on Lymphodemia a condition caused when excessive radiation is done in the breast and under arm area. So after a week, all meds have been stopped and we will continue to watch and see what happens.
Thank you for your prayers and good wishes.

Thursday, June 21, 2001 at 12:35 PM (CDT)

Sean was plugging along his last few treatments with acute diarrhea being the main problem. His Oncologist suggested we try a new medication with this last treatment that "theoretically" should help the diarrhea problem. Well, unfortunately it did "NOTHING" and we became guests of the Sloan "Hilton" on Tuesday. Poor Sean was severly dehydrated and actually looked like he had cancer..... Dark circles under his eyes and absolutly no color to his face. Pain in his joints, and diarrhea really out of control. So his Tuesday clinic visit turned into a 3 day stay. After about 8 hours of hydration his color started to return and other than being very very tired he is pretty much back to his old self. He only has 2 or 3 treatments left (can't believe I have lost count!) and then I'm not sure what comes next. I am hoping there is some type of maintenance program like is done with Leukemia but am probably just having some wishful thinking. The end of treatment is nearly as bad as the begining. It's like waiting for the other shoe to drop. But for now we are taking it one day at a time. Please keep us in your prayers....
Love,
Patty
Mom to Sean (that cute little bald guy)
When it is dark enough, you can see the stars. Charles A. Beard

Friday, May 04, 2001 at 04:28 PM (CDT)

Another round of chemo down, 5 more to go! Sean did ok during round #6. We had one small scare, which he would kill me if I wrote about it here! (hahaha) But it turned out to be ok! Oh yeah and a rash on his head for a few days that we still can't figure out.... He is such a good kid, my pal and my hero.
Please remember him in your prayers. Thanks to all who have signed our guestbook. Please check back for updates.
Love,
Patty
That which does not kill me only makes me stronger.... Friedrich Nietzsche

Friday, April 20, 2001 at 09:52 PM (CDT)

Sean began round #6 of chemo last Tuesday. Yippy Skippy, we are halfway home. Only 6 more rounds to go. He has had a rough time with the irinotecan. Although his counts are not affected his gastrointestinal tract takes a beating. Nausea, dry heaves, stomach pain and severe diarrhea plague him. His liver takes a hissy fit occasionaly too, which causes his bilirubin counts to rise. I feel bad for him because after a two week treatment he has a week off but usually has to spend it within 10 feet of a bathroom because he has diarrhea so bad. But as bad as it is, it sure beats the alternative....
Last night he had me shave the 3 or 4 hairs that were left on his head. Very difficult trying to shave someones head through tears. But I did it! Without a nick! And he is still as handsome as ever! Don't you just love those bald heads!
Thanks to all who have signed our guest book and sent prayers and well wishes. I read them over and over when I need a little lift.
Love,
Patty
"Friends are angels who lift us to our feet when our wings have trouble remembering how
to fly."

Thursday, March 15, 2001 at 09:43 PM (CST)

Sean had scans again yesterday. I was a total wreck all day waiting for the results and wondering why he was having them again so soon. Dr. Wexler emailed me late this afternoon to tell me scans all looked good "With no evidence of disease"!!!!! He explained the scans were done again to make sure the Irinotecan was working. He said were Sean not given chemo after his 11/30/00 surgery, mets would again be showing on his lungs. Since they appear to be clear in the scans it is safe to say that the Irinotecan is doing its job. He also gave us a time frame for the treatment. 8 more treatments, 12 in total. Scans every 12 weeks from now until 1 year after treatment. Music to my ears (1 year after treatment!)I'm afraid to get too excited. (But I am)I'm not thinking about the what if's but enjoying the moment.
Hope is the thing with feathers
that perches in the soul,
and sings the tune without the words
and never stops at all.
Emily Dickenson

Wednesday, February 21, 2001 at 11:21 PM (CST)

It looks like Sean may have finished this round of chemo without hospitalization or several days of hydration. Yippee Skippy! He is beginning to feel like his "old self" again. Just in time for Round #4 of Irinotecan on Tuesday. :( Please keep him in your prayers....

Wednesday, February 21, 2001 at 10:51 PM (CST)

It's begining to look like Sean may have made it through chemo without hospitalization or several days of hydration this round. Yippee Skippy!!! He is starting to feel like his "old self" again. Just in time for round #4 of Irinotecan to begin on Tuesday. :(
Please keep him in your prayers.

February 6, 2001

Today Sean began round #3 of Irinotecan. He has been switched to 8 days to see if the side effects are any less severe. His prior 2 rounds caused severe digestive problems which led to dehydration and potassium inbalances. We are keeping everything crossed that medications and a change in the number of days of chemo will eleviate some of the side effects this time.

Click here to go back to the main page.

----End of History----