Vote John Troxell for Cancer Research

After a long 3 days in the hospital, Andrew returned home yesterday to the comforts of his own bed where he and Winnie snuggled in for a long winters night. He is doing well and spending today with his mom at the hospital receiving hydration. Pistol Pete moseyed out of town last night and back to Uniontown. Thanks for the gun-slinging, pistol-packing, root'n toot'n, hillbilly help ..... yeehaw!!!!

But today Andrew and I want to devote this blog to asking our friends and family to help support Lauren's First and Goal Foundation by voting for Coach John Troxell of Franklin and Marshall University for the Liberty Mutual Coach of the Year. Coach Troxell was a former coach at Lafayette College where Adam, my brother, went to college.

Lauren´s First and Goal is a 501(c)3 charitable organization, a labor of love started in 2004 by John and Marianne Loose in honor of their daughter, Lauren, a 12-year-old pediatric brain tumor survivor. The Loose family started the foundation as a way to help other families who are battling childhood cancer. John Loose is also a coach at Lafayette College and LFG is helped run by the members of the Lafayette College Football Team.

If Coach Troxell wins, he will be donating the money to Lauren's First and Goal to help fight pediatric cancer and for cancer research. Please use the links attached to the coach of the year or Lauren's First and Goal website to cast your vote for Coach John Troxell of Franklin and Marshall University. Every vote helps!! Also please feel free to pass the links on to your friends and family members. We appreciate the help!!!

For with Money we buy science ... and with science, we buy live.

Everyone needs a sidekick!!

Today was back to the old grindstone of chemo for Andrew. He and his trusty sidekick, Pistol Pete, checked into the hospital this morning for Andrew's 3-day long inpatient treatment. Ang and Pistol have their days jammed packed with napping, talking to nurses, napping, eating lunch, napping, watching crappy TV, and did I mention napping.......It's what they both do best.

Andrew's treatment is going well. He's tired and a little restless but feeling pretty good all-around. We'll just have to see what tomorrow brings.

He still has a healthy appetite though. He ate all of his lunch and a huge dinner filled with about 6 homemade meatballs, pasta and sauce, salad and a roll and he just inhaled two homemade 3 berry muffins. Boy I'm a good wife .... or maybe I myself need a life. Either way, he's eating and that makes us all happy.

And as for Pistol, since he has already killed his 8-point buck for this season, I am truly perplexed as to what he is doing all day but I'm confident that he is taking good care of Andrew. Maybe he's practicing for fishing season .. who knows.

Andrew and I also want to say a HUGE CONGRATULATIONS to Gwen and Kevin who got engaged at 3:30 pm on Monday. I guess it's a good time to get engaged!!!! We are so excited for you two and can't wait for the wedding. We hear it's less than a year away. We are looking forward to Andrew attending cancer-free.

It's about time Kevy Kev!!!! Mazel-Tov!!!!

Can't wait for next season

Thanks again to Jamey Perry, Joe Paterno and Daryll Clark. We can't wait to be at all of the games next year. WE ARE ...... PENN STATE!!!

Success with honor ........

It's beginning to look a lot like Christmas......

Happy late Thanksgiving to all of our friends and family. The past few weeks have been more than hectic for both Andrew and I. The day before Thanksgiving Andrew finished his marathon 33 sessions of radiation ... WOO HOO!! It was a long 7 weeks but we both made it through. The only downside of him completing the treatment is that I had to return to work ... BOO!!! Anyone who really knows me, knows I love staying home and not going to work every day. It is so easy to get things accomplished in a day when no one is on the road, in the markets and in my way. But I digress (as I sit at my desk adding and subtracting to see exactly how long it is till Christmas break .. 13 days not counting today .. if anyone wants to know).

For the most part Andrew's radiation treatment went smoothly, minus the dreaded sunburn, bowel issues and low White Blood Cell counts he had to endure every day. But since the completion of his treatments, he has been able to receive the Neulasta shot that stimulates his WBC's and they have more than recovered to their normal range. Which is a huge sigh of relief for the both of us. Though he was suppose to continue with another round of 3-day inpatient chemo treatment next Monday, Dec 7th, the doctors feel it is in his best interest to wait one more week to begin, so Monday, Dec. 14th it is. One more week off from Chemo will be good for him to regain more strength before getting another huge kick-in-the-ass 3-day inpatient treatment.
Andrew also received an amazing and thoughtful gift at the end of his radiation treatment from my advisor at Penn State, Jamey Perry. Jamey's the biggest PSU football fan I know and he was able to get a personalized autographed football signed by JoePa ad Daryll Clark. It's awesome and it made Andrew smile ear-to-ear. Jamey also sent a football tee used in a game to hold the ball. Thanks Jaim -- you're the best!!! Can't wait to see you next season.......
Since Andrew's treatment ended the day before Thanksgiving we were able to spend the day with my parents in Uniontown. Normally we spend it with Andrew's parents in Princeton, NJ but his dad came down with walking pneumonia and we had to cancel. Steve is doing better and we hope to visit NJ to celebrate Hanukkah next weekend.
But as a whole, Andrew and I are doing great. He continues to go to work as much as he can and stay as active and normal as possible. We are both looking forward to Christmas and spending it in Uniontown with my parents, Adam and of course, Winston, the best bulldog in the world. If you can believe it, even with all of this going on, Andrew and I (when I say this I really me 'I') are done with our Christmas shopping. All I have to do is wrap them, which I plan to do this weekend. I even have all of my Christmas cards addressed and ready to send. This is what happens when your husband goes to bed at 8 pm. You have all kind of time to get projects done. Not sure what I'll take up after the holidays ... maybe knitting or scrap booking. Oh who knows... just one day at a time!!
Since his diagnosis, Andrew and I have felt very strongly that we need to help raise awareness and money for Ewing's. As you can see from the new logo on my page, we are hoping to help Widener University, Andrew's alma mater, to partner with us and with Uplifting Athletes to raise money for Ewing's. We will keep everyone posted on our progress and how to get involved. www.upliftingathletes.org
But for now ... we are just taking each day as it comes and not worrying what tomorrow brings. (Lexapro helps him with this):) Andrew and I will be seeing his doctor at Johns Hopkins the week after Christmas for a follow-up appointment and we continue to see Dr. Felice every week in Reston. He will also be having scans on his hip some time around the New Year to give us a marker as to the size of the tumor and to see what is left to get rid of. Keep your fingers crossed and remember to keep Andrew in your thoughts.

Let it snow, let it snow, let it snow!!!!

His name is Earl

Thanks to some wonderful home cooked meals (pat on the back for me) like the doctor ordered, Andrew's white blood cells have rebounded nicely and he was able to start chemo again on Monday. He is also still having radiation every day and after today will only have 2 weeks left. He should be done the day before Thanksgiving.

Though I'm sure no one really enjoys chemo, I can tell that there are aspects that Andrew enjoys.... first off, everyone knows his name and talks to him... I mean he's a 29 year old cancer patient and most of the people in here having treatment done are over the age of 60 (and I'm being nice.) ..... he also loves having me wait on him ... whatever he needs, he gets ... juice boxes, packed lunch served to him, cookies .... and that leads me to his favorite part of chemo ... Earl, the morning cook in the cafeteria. I can't verify this for myself, but Andrew tell me that Earl makes the best egg, cheese and bacon English muffin sandwiches in the world. He adds a little ketchup for good measure and you should see him perk up in the morning. Earl knows my name and my order and when he sees me coming in the morning, he sprays the griddle and starts the eggs sizzling. With a smile, he always asks about Andrew and makes it right every time. (I should let you know that Andrew does eat breakfast in the morning ... these 2 muffin sandwiches are just mid morning snacks ... and he wonders how he put on 45 pounds?) Though Earl probably doesn't really know it, he is a huge contributor to the success of Andrew's treatment every day. I've tried my best to re-make these sandwiches at home, but Andrew still likes Earl's the best.

There are a mountain of people who contribute to Andrew's overall success with beating this disease .. doctors, PA's, nurses, technicians, schedulers, valet parkers, parents, brothers, aunts, uncles, cousins, grandmothers, dogs, neighbors, friends, co-workers ... and Earl. Thank you all for contributing. We know together we can beat Andrew's cancer!!!!

Muchas Gracias!!!

Sunburn in November

Andrew's spirits have never been higher after last nights win over Philadelphia. He's one happy camper!! Yesterday was a big day of celebration in our house. Not only did Andrew's beloved Yankee's win, but after his blood work yesterday morning, we found out that his counts are high enough to have chemo again next week .... yeah!! His body is strong enough and producing enough white blood cells to fight off infection. It's wonderful news to hear. He was even able to go back to work today, thank the lord for that, and I got my office back. In all sincerity, it wasn't that bad having him home. But it was time for him to go back.
We also had a wonderful visitor for the past 2 days, Andrew's college friend Bill. Yesterday we took Billy on a day in the life of a cancer patient. We went to a doctors appointment, came home and worked, and then went to radiation therapy in the afternoon. What an exciting day for Billy. But it was great to see him and it helps to keep Andrew's mind off of the cancer.
Lynn and Pete are coming this weekend. Winston is so excited to see his grandparents. Currently, he is resting and snoring loudly so he has enough energy when they arrive. Oh, the life of a Bulldog.
But besides that it's business as usual. Andrew is still having side effects from the radiation. Though it is November in Virginia, his hip and stomach (and other unmentionable areas) look like he has been laying the July sun. Radiation gives him an awful sunburn. He has lots of creams and powers but it only helps so much. He is also having some bowel issues (that no one wants me to go into detail with on this blog ..... trust me!!!) but the doctor says that the bowel is a very durable organ and any issues should resolve themselves after the treatment is over. Crossing our fingers on that one.
So we are ending week 4 of radiation, amazing. Only 3 weeks to go.... till radiation is over and Thanksgiving. Andrew and I are excited for the weekend and the PSU vs. O-State game on Saturday ....



We are ..... Penn State!! Go State, Beat Ohio!!!!

Penn State
"Fight on State"

Fight on State, Fight on State,
Strike your gait and win,
Victory we predict for thee,
We're ever true to you, dear old White and Blue.
Onward State, Onward State
Roar Lions roar,
We'll hit that line, roll up the score,
Fight on to victory evermore,
Fight on, on
On, on, on!
Fight on, on,
Penn State!

(Normally this where a Jager shot goes ... Jamey and friends, do one for us this weekend!!)

Calgon, take me away .....

Dear All,

My nightmare has come true. Yes, I know my husband already has cancer and most of you would think that we are living in a nightmare..... but no. Andrew's doctor told him today that he has to spend the rest of the week at home working so not to be around all of the people in his office with the swine flu. To quote Jason Segel in the movie, I Love you Man ...... this is my nightmare!!!!
Normally I wouldn't care, since I am not usually at home but since I too am still working from home .... this poses a problem for me. I mean don't get me wrong, I want him to be healthy and keep his counts rebounding so that he can have treatment next week, but all the Calgon in world can't take me away from this. Andrew is too serious. When I'm working at home I listen to music, talk to the dog, check people.com, talk on the phone, read usweekly, update facebook ... you know, the usual girl stuff. But Andrew, he could care less what Brad and Angelina did or wore last night ...or who put cute pictures of their kids up on facebook ... and he doesn't like my music .... and he finds little to no amusement in the snoring (and may I add) and most adorable bulldog in the world. He also likes to talk on speaker phone ... which drives me right up the wall. I mean he may not care about Brad and Angelina but I could really care less about whats on the docket for the next few days or if anyone else created a thing like the thing in front of him. Boring!!!
But for now, I am trying to have Andrew's best interests at heart .... and in mind. Andrew's counts are rising but not as quickly as they would if he were able to receive the neulasta shot (which stimulates his white blood cells). But since he is receiving radiation, he is not able to receive the shot for the next 5 weeks. All we can hope is that his body is strong enough to produce some of its own white blood cells and fight off any infection that he may get. On the bright side, his spirits are high and he looks great. The doctor is continued to be amazed by Andrew and that continues to make Andrew happy to hear.
Please keep Andrew in your thoughts ..... and me as I quietly endure the next few days!!!!

(Filling the bathtub with water and bubbles)

Calgon .... take me away!!!!

Where has the time gone....

I'm completely amazed that we are in Andrew's third week of radiation treatment. Though most people would think that time almost stands still when you're sick ... we think it is just flying by. Andrew is doing great. He had a little set back last week after getting sick ... and then giving it to me ... but has been on antibiotics every since. We hope that after the doctors appointments on Wednesday, he will be cleared to return to chemo next week. His radiation has not been effected by the sickness and he has continued every week day, at 3:10 pm, as usual. He is also continuing to go to work every day, which is great for me, because he did stay home one day last week, and I thought I was going to kill him. I love my husband and I know he has an important job, but our house is only so big and we only have one office and when he gets on business calls and shuts and the door to the office in the middle of the day, it really mucks up my day since the office is where my computer, files, printer, memory sticks, paper, phone ... you name it, is located. (don't take this personally Steve) But for that day, I felt like I was at his parents house when his dad is on a business call and we all have be quiet, not make much noise when moving around, and somehow entertain the dogs and reason with them to comply as well. You can all guess how that goes. Besides that, and now that Andrew is back to work, life is going on as planned.
Andrew was even able to get out for dinner on Friday with friends; went shopping on Saturday for new clothes (that fit); and watched football with the boys on Sunday while I went to a bridal shower. (For those of you who don't know and haven't seen Andrew in a while, he has gained about 40 pounds from the treatment and drugs. The doctor is fine with the gain and is happy for Andrew's healthy appetite.)
We continue to receive such love and support from our family and friends and will never be able to express the gratitude we have for all of you. Please keep the love and wonderful thoughts coming .... they're working!!!!

Rain, Rain go away ... come again some other day!!!!

Two tickets to 'Uneventfulville'

This week can be summed up in one word..... uneventful. I know that's hard to believe in our life but this week has gone very smooth and Andrew is responding well and handling the treatment just like the doctors would like to see. Andrew began his first of 7 weeks of radiation at the Tomo Center in Fairfax, VA. It's one of the most beautiful and comfortable places we have ever been. The staff is great and knowledgeable and always there to answer any of our questions and concerns. We also meet with Dr. Bajaj every week to discuss Andrew's treatment and what he saw for the week. Dr. Bajaj is happy with what he saw this week and with the plan that he has set forth for the remainder of the treatment.
I think the only person ... well kinda person ... who is having problems with this chemo/radiation schedule is Winston. The best bulldog in the world. Winny is overly confused with the fact that we leave in the morning, like usual, but come back around 1:30 every day after chemo and are home for about an hour before leaving for radiation at 3:10. He has been eating 3 meals a day since he just can't get this schedule down pat ... so I guess he and Andrew are putting on the cancer weight this week. As you can see from the picture he is not happy to share the bed with me but is so cute I just couldn't move him.
But besides that life is continuing as normal as possible. Gwen and Steve are coming to visit for the weekend and we are very excited to see them. Thank you to everyone for all of the love, support, phone calls, emails, Facebook posts and cards. They keep Andrew's spirits high and his eye on the prize .... becoming cancer free.

Woof Woof ....

Not in Kansas Anymore

So its been a crazy week already. Andrew and I finally found a radiation oncologist that we feel comfortable will provide the quality and level of care and has the expertise we are looking for. His name is Dr. Bajaj and he is located in our backyard and works out of the Fairfax Inova Hospital Group.
But our adventures for the week did not begin there. We first started out in Woodbridge, VA with Dr. Boylan, one of Dr. Bajaj's colleagues. That's how we found Dr. Bajaj... and thank goodness for that. I mean, have any of you ever been to Woodbridge? Me neither, until this. That's where Dr. Boylan's office was located. Anything outside of the 495 beltway seems like a different world to me. Though I don't claim to be a city girl by any means, and would move to State College, PA in a heart beat if I could, when I am in the city, I act like a city girl ... honking at anyone who gets in front of me, drinking Starbucks at all times of the day, only wearing heals over 3 inches high and texting to anyone and everyone who will write back to me, all the while wearing Big Jackie-O sunglasses to shield my eyes from making real contact with anyone ... to validate my importance, of course. Trying to maintain this pseudo-life in Woodbridge, would have been impossible. I never did see a Starbucks or anyone but the doctor and myself in heals ... she had on Stewart Weitzman's .. nice choice. When we stepped out of the car after our 1 hour and 15 minute jaunt from our McLean home and I looked around, I said 2 things to Andrew. 1. Look honey, this is where all the tree are..... Trees for miles around , and 2. ToTo, I don't think we're in Kansas anymore... And sure enough I was right. Woodbridge did remind me of Uniontown, PA, where I grew up a little. But there's reason we are not having treatment in Uniontown and are staying near a big city for medical treatment.
So after a great appointment with Dr. Broylan, she set us up Tuesday afternoon to meet with Dr. Bajaj at the Tomo Therapy Center in Fairfax ... an area we were more familiar with ... so we high-tailed it out of small town USA, got on 95 North and headed back to civilization around the city. Uh .. Starbucks Pumpkin Chai Latte here I come.
Dr. Bajaj is a young guy who actually used to work at Johns Hopkins with Andrew's specialist Dr. Thornton, so we have great confidence in his skills. He has seen upwards of 5 cases of Ewing's in his time as a doctor. Though that may not sound like much, seeing one case in a life time as a doctor can be rare, so 5 makes us feel pretty good. Andrew will be having anywhere from 31-35 treatments, or about 7 weeks in conjunction with his 5-day out patient I/E treatment. All of this will start on October 12th and continue though Thanksgiving week. So you guessed it, Thanksgiving will be here in Northern Virginia this year ... a first for us. His treatment will only take about 20 minutes per day and it will be given to him on a Tomo Radiation Therapy machine. This machine is not new, it's been around for about 7 years, but it is a more precise way for doctors to give radiation without hurting good cells in the process. Andrew and I were both impressed with the machine and its capabilities. He will be having a planning session tomorrow so that the doctor can make out a road map for where the radiation beams will be pointed. The great thing about this machine, is that each day a CAT scan will be done to modify on the fly for any sudden changes, ie an enlarged bowel, kidney ... just anything that may change and potentially be in the way for that day. This will help to keep healthy organs out of the way of the treatment.
But besides that, Andrew continues to go to work each day and I am now working from home. Georgetown has had a large outbreak of H1N1 virus and to keep myself and Andrew healthy, I have been able to work out this schedule. My hope is that I can keep it up through Thanksgiving and maybe even a little longer, until Andrew gets strong enough for me to be around college kids .. who of course think it is fine to cough, sneeze, blow their nose and oh yeah .. come to my office in this condition to tell me about it. Memo to students ... I am not a doctor and I do not play one on TV, go to the Student Health Center or the hospital and not to your advisors office who can't write you a prescription or a note of absence from your classes. Didn't your parents teach you anything ..... so because of the lack of common sense that Georgetown student possess, I am home, staying healthy.

Be well ... And wash your hands frequently with soap and water to keep the spread of virus to a minimum!!

Elmer Fud

Andrew finished his 5th chemo treatment yesterday and came home last night from the hospital. He is doing well; eating and drinking, all the normals for him. After dinner last night, Andrew's brother Jeremy came from his new home in Baltimore and Big Pete went back home to Uniontown to go back to Cal U and teach. When Andrew's in the hospital, Big Pete is such a help. He literally goes into the hospital at 7:30 every morning and doesn't come home until 10 pm every night. This allows me to go to work for a while, make dinner and bring it in and keep life running and visit Andrew at the same time.
Curiosity killed the cat, I know... but I had to ask, What do they do all day when I'm not there. I learned that Big Pete and Andrew are good nap buddies. The both take siesta's throughout the day to get their beauty rest and since Andrew isn't always up for conversing, the Big Man is practicing for hunting season. Yes that right, Elmer Fud himself sits quietly in his seat, not making any sudden moves so not scare ... I don't know.... the chemo drip.... from moving .... all time honing and sharpening his hunting skills for the blissful time he spends every winter shoved in a tree ( a sturdy tree) waiting for that fateful moment when a poor and innocent deer walks into this path ... and then BAM ... you get the point. I always call a head when I coming into the hospital because I'm afraid I could accidentally be mistaken as one of the lonely and innocent who's lost their pack.
But really, I'm overly grateful for Elmer's time and attention to Andrew. I hope this extra practice helps him to 'bag' his deer early this year.
Today Andrew is in the hospital receiving hydration. He's sounds good and is looking forward to watching PSU beat Iowa this weekend ... Go State!!

SSSSHHHHHH... quiet, we are approaching the deer. (I love those hunting shows that you have to raise the volume just so you can hear what they are saying because they are whispering).

Pip Pip ......

PS: We also want to say a big MAZEL TOV to Shannen and RJ Kline on the birth of baby Braedan. We can't wait to meet him!!!!

A. Lama

Andrew and I will always have the running battle about religion. Andrew's Jewish and I was brought up Catholic. Neither of us has given up our birth faiths to convert to the others, though sometimes I think our families would like to see it. My mom always says, 'we should pick a religion in the middle and join that.' Honestly we have no idea what that means, but joke that maybe it's Buddhism. Not exactly what I think Linda was thinking ... but everyone just goes along with us.
But maybe we are on to something. Since Andrew has been diagnosed (and put on Lexapro) his attitude about the disease and how he would like people to preserve his attitude about the disease has been amazing. He has started to tell me what an inspirational person he thinks he is... spreading the message of positive thoughts and healing to all he meets. But it wasn't until this weekend that I saw A. Lama at work.
So why A. Lama ... because Dalai was taken. This weekend we went to Mia Westoff's first birthday party where most of the people at the event had no idea Andrew was sick. It wasn't until he was asked how he got his head to have such a smooth shave, that A. Lama and his spiritual and life views became the center of the discussion. It's natural that people are curious about his disease and how someone who looks as healthy as he does is sick. But it wasn't until I looked around the room at all the guests sitting intently on the U shaped couch, while A. perched on a chair in front of them, did I realize maybe he does command a crowd. I mean, he's not Gandhi and going to lead his people on a salt march to protest the tax on salt but his attitude and the way people preserve him, helps them not only to better understanding the devastating effects of cancer but how to deal with it and treat people with the disease as friends, family members and loved ones and not patients.
And though we will probably not be converting to Buddhism any time soon, Buddha are described 'as an awakened teacher who shared his insights to help sentient beings escape the cycle of suffering and rebirth. The Buddha's teachings provide instructions on how to understand the true nature of phenomena, end suffering, and nirvana.' Spreading his message and story is one of the most powerful ways to find a cure and to educate others about the signs and symptoms of cancer.
So for now, a new mentor on life, strength and awareness walks among us, A. Lama. And since he's not Buddhist and completely selfless.... he charges by the hour, doesn't handle children and insists that all of his food be served on gold plates arranged so none of the items on the plate touch one another ...... Celebrities and their crazy demands. To book him for your next party, bar or bat mitzvah or retirement soiree, call him at 1-888-gr8-ALAMA... and ask for Amy. Dates are booking quickly so act fast.


Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.

Thoughts for others

It's amazing the support we have received throughout this process of Andrew's illness, that we would like to turn the focus on someone else who is in our thoughts every day ... as we are kindly reminded by them that we are in theirs. Ishmael Conklin is the adopted, one year old son of my friend Stephanie (Harrison) and Mark Conklin. Ish was born without fibulas in his legs and as a result has unstabilized ankles. The Conklin's have spent countless and tireless hours working to find a doctor to repair their beautiful Ish. This week they travel to Cleveland Clinic to meet with an orthopaedic specialist who may be able to help Ish.
In our time of need, we ask you to remember Stephanie, Mark, Ish and their 2 other sons Toby and Eli in your thoughts and prayers this week. Even in their own time of uncertainty, Stephanie always takes time to read our blog, send positive thoughts and prayers, as well as asking her husband Mark's parish to pray for Andrew on a weekly basis. Though Stephanie and I have not kept in touch since our time at Ben Franklin Jr. High, we have reconnected recently to fight for causes near and dear to our hearts, our loved ones.
Check our the Conklin's blog and leave loving thoughts and wishes for Ish and the entire Conklin family.
http://www.indiansandpirates.blogspot.com/

Safe travels .....

Not my first Rodeo

For years I said that I wanted to quit my job and Andrew always tell me 'no.' And in his defense, for good reason. I mean, what would I do all day; how would I contribute to the overall family income. But now, I've got a plan. I've decided to bill doctors for the hours upon hours that I spend in their waiting rooms, patiently, waiting for them to come in and see Andrew. Why do I have to block off an entire day of my life, for an hour appointment that ends up taking 4 hours to complete. So I ask you .... How much is your time worth?
I've decided that mine is worth about $200 an hour. And let me tell you how I came up with that number. When I go with Andrew to the doctors, I don't willy nilly in to the office unprepared. I come equipped with all the papers all filled out and signed, all the scans already copied on disks (that the doctors can keep) which are numbered to the corresponding reports (that they can also keep for their own records), a copy of his chemo regiment and a list of his medications, all which are presented to the attending nurse in a color folder with the hospital name, doctors name and time and date of the appointment neatly written on the front.... in case they aren't aware of their own scheduling issues, I remind them of it.
I also keep a separate binder with duplicate copies of everything, phone numbers and dates of doctors we've seen, articles written about Ewing's and various other items and notebooks that help me to get through this process with ease. As my dad would say ... This not my first Rodeo!!!
I make things so easy, even a child can handle it. Andrew's case is presented in the paint by numbers, kindergarten, gran animals way that anyone can do. So why do we wait?
I think my favorite part of the waiting game is when they send in the nurse to take the vitals and ask her to take a history of Andrew's case .... that takes up a few minutes .... then comes the intern or resident to again hear the history ... who gives a damn, Doogie isn't touching my husband with a ten foot pole.... and then the dramatic, lengthy waiting begins... it could be an hour, it could be 2 ... yes we've waited that long .... thanks Johns Hopkins ... and finally the grand entrance of the doctor... who again, wants a history. This is when you know that none of those previous people actually matter in Andrew's case and that they were just the opening act to the show. And the song and dance pony show continues.
So maybe $200 is a low ball amount... I think my time is worth more... don't you? I don't want to bad mouth all doctors in the world.. Dr. Felice is the most punctional man I've ever met ... ever!! He never makes us waits, knows Andrew's case and reads the scans beforehand and never sends Doogie in first to do his job. I also want to commend Dr. Henshaw, who we saw this morning for a surgical consult.... a little late and a pony show, but helpful and had us out of the office within one hour... a record for us.
But I guess I wonder what would happen if I sent them a bill? Would they send it to insurance, or the complaint department at the hospital, or the pain-in-ass, PMS, overbearing wife department? Do hospitals have one of those? Who would pay my bill.... It's a big one!!!!

But even with all the waiting that we have had over the past few weeks, we did receive some great news this week from Andrew's oncologist, Dr. Thornton at Johns Hopkins. (email below)

Pre-lim result from MRI read looks great. Near complete resolution of soft tissue component of tumor, and the bone parts is "stable" (bone portion doesn't change, as the bone doesn't fill itself in again). This all sounds good, I will review in more detail on Wednesday, but just to set you guys at ease, everything looking good so far. Thanks- KAT

ANDREW'S TREATMENT IS WORKING AND HIS CANCER IS SHRINKING!!!!

This is just the news that we needed. I'm still considering billing for my valuable time lost, but getting news like this makes us know we are on the right path and that he is not going through all of this torture and poison for nothing. It is responding to treatment and we are currently interviewing .... yes I said interviewing ... radiation oncologist. I've also decided to treat any new doctor I meet like a job candidate. They are vying for a position in our families life and treating Andrew, is like treating the family. We are all involved and this person has to be a good fit in many respects. We hope to come to a decision soon. We are just cross checking references at the moment. It's a competitive process. And dealing with Pete and Steve and Jeremy and Andrew and Adam and Linda and Gwen and myself .... can be one hard task, so I pity the person we actually hire for the job. Part of the job requirements from now on, on time ... or you're fired!! Not kidding!!

But besides that Andrew is doing great, feeling great and continuing to live each day to the fullest. We have amerced ourselves in PSU football and even though we may not be there this year, our spirit at "communion" lives on each week with the help of our tailgating mentor, Jamey Perry!!! We can't wait to be back next year!!!

Ye Ha .. Ride 'um cowboy!!!

Mr. and Mrs. Gary Tier!!!

Thank you to everyone for your thoughts and prayers throughout the weekend. Andrew and I had a wonderful time at Lanhi and Gary's wedding. Andrew did great. He was able to make it through the rehearsal dinner, ceremony and wedding with ease. It was very important to Andrew to be there for his best friend on his wedding day and I am so glad the wedding went off without a hitch and he was in attendance.
We were also very happy to get to spend time with Billy and Laura and all of Andrew's family on Sunday. Thank you to everyone for making time this weekend to see Andrew. Laughter and Friends are definitely the best medicine.
Andrew and I have a couple of big weeks a head of us. He has his 13 week scan tomorrow ... which personally has me on pins and needles right now. The scan will help us to determine what's next, radiation or surgery. Whatever we decide, it will be life changing in its own way.
Congratulations again to the new Mr. and Mrs. Gary Tier ..... have a wonderful honeymoon and we can't wait to see you when you return.

Good tidings ....

One day till wedding day ....

Well not our wedding day, that was 3 years ago, but the wedding of Lanhi and Gary Tier which Andrew and I have been gearing up for all week. Andrew is doing good today, not terrific but good. The chemo takes a toll on him by this point in the week. His spirits are good though and that's important. And I can tell he's excited to go to the wedding. We have a 3 pm train that we hope to catch. Andrew's chemo should end around 12:30 pm today. Perfect for us to get home and get to the train.
This weekend will be a long one for him so we ask for as many thoughts and prayers for him as possible. He's strong but his strength only goes so far and then the side effects of the chemo overwhelm him. I hope on the train to NJ he can get a nap before we have to attend the rehearsal dinner this evening.
Congrats to Lanhi and Gary who will be marrying at Jasna Polana in Princeton, NJ tomorrow evening. Andrew is honored to be in the wedding and we wish you both a lifetime of health and happiness.

Here comes the bride ..... all dressed in white!!!

Alert and Awake

Tuesday was a pretty uneventful day. Andrew's chemo went as scheduled and he did well with little nausea. Today is much of the same. Thank goodness the Infusion Lab at the hospital is beautiful and new. It helps to actually be able to see the outside from the large windows that line the walls of the room, since we can't be outside enjoying it. We've been lucky this week, the weather has cooperated allowing Andrew a little time outside each night. Fresh air is good for the body and the soul.
All we can hope is that the treatments continue to progress the same as they have been going. As long as all goes well today, we hope to stop by Men's Warehouse on the way home and pick up Andrew's tuxedo for Gary and Lanhi's wedding this weekend ... fingers crossed that it fits. With all of the drugs and steroids in his system, he tends to 'bulk up' during the treatments themselves. I can tell by how swollen his fingers are right now that its the case for this round too.
Though his appetite and spirits have been great during this round, his short term memory is severely suffering during this round of treatment. The doctors said that this is normal and just a side effect of the chemo and the Adivan mixture. It's almost like he has amnesia or Alzheimer's. Anyone who is reading this that will see him at the wedding this weekend, please be patient with him and understand that he may not remember recent conversations he has had with you or simple things you tell him. It's ok to remind him over and over again, because he usually doesn't remember you told him before. The side effect should subside as the medicine gets out of his body. But as for now, its lists, lists, lists ... remind, remind, remind.
So he's doing well today.... forgetful memory and all. We are looking forward to having Jeremy at the house tonight. He will be driving one of our cars back to NJ on Thursday with all of our weekend attire and Winnie -- the best bulldog in the world. Andrew and I will join by train after his chemo ends on Friday.
But for now we sit back, relax and continue working until his chemo is complete today. Thank you to everyone for the wonderful and encouraging notes, thoughts and prayers you send everyday. I think they're working!!!

Stay cool ......

Tailgating for chemo?

It may sound strange but today we are tailgating at the Infusion Lab at the hospital. Chairs are limited, unless you are a patient, so I brought my own seat to sit in today. Me and my favorite, Penn State tailgating chair complete with cup holder and my cooler filled to the brim with gatorades, waters and sandwiches have popped a squat at the foot of Andrew's Barcalounger, where he is receiving chemo today. He looks good, though he is asleep right now, resting peacefully from the Ativan he took earlier from the slight nausea he was experiencing. Though I'm sure some of the nausea is from the chemo, after he ate lunch, he felt a lot better.
Andrew's loves the infusion lab, aside from the fact that they let him go home everyday, it's normally quiet and relaxing and he has his own personal nurse that are within arms reach every second he is here. He feel comfortable here and is well cared for by Nam, his wonderful nurse. Though the regiment of Istopside and Ethoside haven't changed, the way in much the saline/potassium mix is being incorporated into his port has shifted. The mix is now added during the entire time the chemos are injected, about a 3 hour time frame, which allows for a little bit of overall time to be taken off of the whole process. The less time he has to spend here, the better in his mind.
Andrew should be done and we should be on our way home by 3 pm today, maybe even earlier. Then he can go home and rest and I can, yet again, return to Macy's and take his suit back that he bought for Lanhi and Gary's rehearsal dinner this weekend. You would think that when the tailor hung the pants on the hanger he could have seen the 2 inch difference between the left and the right leg --- that's right, he only tailored one leg of the pants ....... rediculous. Hopefully when I return from the mall, Andrew will be up for dinner. Then it's off to bed to do it all again tomorrow. Overall today has been on ok day..... easily controlled by medicine. That's all we can hope for everyday.
This weekend is Lanhi and Gary's wedding for him to look forward to. Next week is an appointment with a radiation oncologist and another onthopaedic oncologist in the DC area.
Tune in next time for Andrew, Day 2 of chemo!!!! And the excitement continues.......

Live long and prosper!!!

Humpty Dumpty

I've been a little delinquent with updating the site and I apologize to my loyal readers. Since Andrew left the hospital, he has been doing very well and has needed little to no anti-nausea medicine to keep him going with his regular routine. Andrew and I both went back to work this past week and tried to resume a normal schedule. We (and Steve) also went to Johns Hopkins on Wednesday to meet with Dr. Kristy Weber, Andrew's orthopedic oncologist. The meeting was informative, concerning and left us all with a lot to think about. Dr. Weber explained the best and worst case scenarios of surgery. Best case scenario, the tumor has shrunk and only a small amount of the Ischium and Pubic Bone (area 3 and 4) and the muscles and tendons around the infected area would need to be removed, and possibly a horseshoe shaped mechanism could be reattached to the hip bone (area 2) to form a pseudo hip joint. His mobility would be compromised but the length of his leg would stay relatively the same length. Worst case, the entire area(area 3 and 4) and the part of the hip joint (area 2) has to be removed, no mechanism put in its place and his leg could ultimately be about 2-4 inches shorter than his right leg leaving him with less mobility, needing lefts on his shoes and at least a cane for the rest of his life. We won't know exactly how bad surgery would be until he has his next scan in week 13 (we are starting week 11 today).
Now its up to us ... to find a doctor who is willing and able to try and rebuild the part of the hip that will need to be removed. We are all on a hunt for any orthopedic oncologist in the country who is doing an kind of experimental treatment or surgery to reconstruct Andrew's hip. I know we will find someone. Andrew is having a hard time coming to terms with the fact that if the surgery has to be done, he will walk in normal and walk out a completely different and ever changed man. There is a possible alternative to surgery ... radiation therapy. Though at first glace, it sounds like a better option; little to no nausea, just a few minutes a day for 5-6 weeks, no real pain; the long lasting side effects can be hard to stomach; the return of cancer, liver, kidney and bladder issues or failure, heart issues. But we will be meeting with a radiation oncologist associated with Johns Hopkins the Tuesday after Labor Day. She will help shed some light on radiation and help us to better make a decision.
Whatever is done will probably happen between weeks 12-18 of the treatment.... so right around the corner. As for now, we will continue to see other doctors until we find one ..... who can put Humpty together again.......

Sayanora!

TGI.....W

As a rule, most people's favorite day of the week is Friday. It's the last day of work for the week and the pre-show for the weekend and whatever is to come. Wednesday is traditionally just called 'hump day', the day you get through to get closer to Friday ... but in our house during 3-day inpatient treatments, Wednesday is the best Day of the week..... TGIW!!!!
Andrew is doing fairly well for the amount of chemo that he has received in such a short amount of time. He has been eating, at least something, 3 times a day, which is wonderful. Nutrition will help him to keep his strength up. It also shows us that he is not as nauseous as he was during his first 3 day treatment. He hopes to be done with his treatment around 1:30ish today and he will be able to leave shortly after that and go to our home and be in his own bed, resting.
He's been a real trooper this week and we hope it continues throughout the weekend. Thursday and Friday he will come back to the hospital, as an outpatient, to receive fluid injections that last about 2 hours a piece. This helps to keep him hydrated and just overall makes him feel better. Gwen and Steve are planning to stay until Saturday morning to help out. By then, hopefully, Andrew will be strong enough to start getting back to normal.
As for me, I'm still working from the hospital, doctors office, house, my office... etc, any where I can get interact access and any time I have a minute. Students lives, problems, med school applications, problems... oh did I say Problems, never stop and they don't care what's going on with you, because their problem is always bigger. But besides that, I'm good.
But for now, Andrew is taking a nap and just waiting for the last of the chemo to finish dripping so he can go home and see his 'Stinky' (our dog Winston) who is anxiously awaiting his arrival.
Thanks for all the emails, phone calls, notes, cards and overall thoughts and prayers. Andrew is benefiting tremendously from all of the positive energy.

Tootle Loo .......

Life's a Beach ....

While most of you are spending your summer vacation somewhere warm like the Outer Banks, our family is enjoying the chilly arctic air pumped through the vents in Reston Hospital. Yes, that's right folks, Andrew has turned Room 573 into his own winter wonder land. The balmy 45 degree weather in his room, has forced everyone to dig out their favorite winter parkas, heavy wool socks and ear muffs, just to come in and visit him. He, on the other hand, is comfortable in shorts and a short sleeved button up, and still need to change his sopping wet clothes twice each day, just to stay dry himself. While the rest of DC smolders with the 100 degree days, we at the hospital shiver, wondering when this cold spell will end.
As you can imagine, the chemo mixed with the kidney recovery medicine, Mesna, makes Andrew very hot and uncomfortable but with the low temperature in his room, he seems to be staying at ease. In comparison to the last 3 day treatment, Andrew is not experiencing the extreme nausea that he had before. The Emend pill, that he continues to take for the overall nausea, seems to be working for him. The hospital still gives him his regular dose of Phernagan every 6 hours to keep his nausea under control, but he is eating well and able to stay awake (well sometimes) and have interacts with us. It's a great sign that this treatment will be bearable as well.
Gwen and Steve are here now and Lynn and Pete are heading to visit Adam for the remainder of the week. We can't thank everyone enough for all of the help, love and support. If all goes well, Andrew will be able to come back home tomorrow (wed) in the mid-afternoon. But for now he is resting comfortably counting down the hours until he is home in his own bed watching his own TV. Thanks for everything.

Godspeed......

Family Fun Time

What a great weekend .... Pete, Linda, Adam and Nikki came to visit us and we put them to work. From Thursday evening to Sunday, Pete, Adam and Andrew worked hard in the sweltering heat and put in new doors to our townhouse. They are not much different in design from our original doors but, boy, can you tell a difference in how they close and actually seal. Thanks to everyone for the help this weekend. The door look great and it was wonderful to see you all.
We were also happy to be able to meet up with Lanhi and Gary who were visiting the area. Thanks for the visit and please come back and visit us again soon!!
But even good things have to come to an end. Andrew is back in the hospital today receiving his 3rd round of chemo. He will be in the hospital until Wednesday receiving his treatment continuously for the next 48 hours. This treatment is a real 'kick in the ass' but Andrew has a better attitude overall which is helping him get through. He had a minor set-back today with his port malfunctioning this morning, but all is well now and he is hooked up and on his way.
Andrew even felt well enough to eat family dinner with us tonight. Mom and I made chicken Parmesan, noodles, salad and bread for dinner and he had 2 helpings. (My good little eater.) We set up the reception area with a table and chairs just like at home. But besides that it has been a very usual day. Well, usual if you have cancer and are receiving chemo ... not normal to most.
Parent swap day is tomorrow. Lynn and Pete will be continuing on with their traveling show and heading to Adam's house to set up shop for a few days and Gwen and Steve will be taking their place. Winston is sad to see his Nana and Pap Pap Bozick go, but is happy to get a little sleep without Nana around forcing him to stay awake and play with her all day. It's exhausting being a cute bulldog 24/7.
We also want to thank everyone for all of the wonderful cards and emails we have received recently. We are happy to have Andrew in every one's thoughts and prayers each day.

Y'all come back now..... you hear!!

Recap of the week

It's strange to have a bit of normalcy and not have anything pressing to report. Andrew handled his last treatment with such ease and has continued to go to work each day and keep himself busy. We celebrated our 3rd anniversary on July 29th .... 3 years of bliss is what Andrew calls it. I hear a bit of sarcasm in his voice when he says it, but I choose to ignore it!!!
He also had 2 good doctors appointments last week and will have a final one this Friday to make sure that his counts have rebounded enough to begin the next inpatient 3-day treatment next Monday. And the vicious cycle repeats itself.
Linda, Pete, Adam and Nikki (Adam's lady friend) are planning a visit this weekend to help Andrew and I put in a new front and back door to our house. As long as Andrew feels good, we are keeping the home improvement projects on schedule. As most of you know, Pete has to have some sort of home improvement project to accomplish every time he visits or who knows what he will get himself in to. I joke and say that Andrew will go into the hospital and come home a week later and ask ... where does that door go to? ... and my response will be .... well we left Pete in the house alone for a week, so he added a whole new wing onto our townhouse and that's the door that will get you there!! I joke, but you all know it's true!!
Gwen and Steve will also be making an appearance some time next week to relieve Lynn and Pete before they head to Adam's house for a few more days of home improvement madness.
Andrew and I will also be traveling to Johns Hopkins on Aug 19th to meet with Dr. Kristy Weber to discuss some, if any, of his surgical options. We look forward to hearing more about what comes next!!!
But besides that we are just gearing up for the weekend of the fam visiting and hope to meet up with Gary and Lanhi while they are in the area this weekend. We are also getting ready for their wedding in the next few weeks. So life goes on ... maybe not just as planned ... my clipboard of fun didn't have this detour on it! ... but we're taking each day as it comes and just putting one foot in front of the other.

See you later alligator .....

Andrew M. Waxman, Esquire

It's official, Andrew's law school diploma arrived in the mail on Saturday. It looks amazing in the frame and in his office at work. Yes that right, he was feeling so good today that we went out to lunch in Reston with Linda and Pete and then they came to his office with us so that we could hang up his new diploma and rearrange his office. And if you think that's amazing, he also went out to dinner with us on Saturday night and we went to Best Buy. It's been a great weekend for him.
What we have learned is that the 5-day treatment coupled with the Emend can be a manageable treatment for him. The 3-day intensive in patient treatment still remains a mystery as to how the Emend will react and how Andrew will feel but I guess we will know that soon enough. Only 2 more weeks and he starts the process all over again.
Thank you to everyone for the emails of encouragement, cards of hope and packages of sunshine. They have all made Andrew smile. And as you all know, his smile can light up a room and just for a minute make us forget his disease and live for the moment.

Cheerrio!!

Calling all friends and family for help ....

Dear Friends and Family,

As a precaution, we had Andrew's blood typed while he was in the hospital. He is O negative ( O-). The surprising part of that to us is that neither of his parents are O-. (I thought he was the mail mans kid.) But we have learned that parents that are O+ and A+ can produce an O- child. But much to our luck no one in the immediate family seems to be a match for him. The problem with O- blood is that you can give to anyone but can only receive O- blood in return. In lays the problem. So I am putting out a search to everyone to help us out.
Right now Andrew doesn't need a transfusion, but may in the future and since you can only donate ever 2 months or so and O- blood is so rare, I would like to start my search early. If you match Andrew and you are willing to do direct donation for Andrew, please let me know so that I can work with Reston and Johns Hopkins Hopitals and your local Red Cross to get the ball rolling.
http://www.givelife2.org/links.asp

Please feel free to email us at amyandandrewwaxman@hotmail.com if you can help.

Hugs and love,
Amy and Andrew (and Winnie)

Prison Break

Free at last ... Free at last .... thank god all mighty .... Andrew's free at last!!! On Thursday, Dr. Felice allowed Andrew to receive his chemo treatment and hydration and come home!!! He was such a happy camper. On the way home he even felt well enough to stop at the Verizon store and look at a new phone for himself. I am also very happy that Andrew still has a healthy appetite ... well sort of. Last night he asked for Mac and Cheese.... not the homemade stuff but the box stuff. And since I don't keep it in the house, he drove he and his mother to the market to buy some. What a big step to feel well enough to drive and to be out in public.
A recent staple for Andrew has become his chapeau. His hair has become very patchy and spotty in places and he has almost entirely lost all of his facial hair. For those of you who know Andrew well know that this is such a shock to him since he is such a furry Murry. It has also required even more cleaning of the house lately since he has been leaving his fur behind all over our house. I'm not sure who is worse at this point with the fur, Andrew or the dog. I mean they have always been very similar, short appendages; stocky; furry; wrinkly; and now bald. No paternity test needed there .. they are definitely related.
And as for today, so far, it has been a good day too. Gwen, Andrew and I are sitting in the beautiful redesigned infusion lab in Reston Hospital for the next 5 hours for him to receive his last day of chemo treatment. He is doing well and looking and feeling good. Today is also parent swap day. Linda and Pete, of course, left at like 5 am to get down here and should be in VA soon... you know Pete.... As a family we plan to have dinner tonight, Linda's homemade Lasagna and Meatballs, and then Gwen and Steve will depart for NJ. Pete has a few projects to do with Andrew this weekend, namely hanging the new TV on the wall in our bedroom for Andrew .....Thanks Uncle Al and Aunt Janet again for the gift. He is also going to clean out the grill and help Andrew to reorganize the shed. Linda and I have more pressing issues, I have to find the perfect dress for Lanhi and Gary's wedding in a few weeks. We will of course put our bargin hats on and hit the trail.
But it will soon be time for life to get back to normal. Andrew has 2 doctors appointments next week, Wednesday and Friday. We hope that his courts stay high and he stays strong this week.

TGIF and have a great weekend .......

What Happens in Reston (I mean Vegas) .......

The smile on Andrew's face tells the entire story of his stay in Reston Hospital this week. He has been responding well to the treatment, eating 3 square meals a day (at least), showering, checking emails, going on walks outside in the evening, driving all of us crazy and being a real PIA -- as usual. And we wouldn't have it any other way.
As a lively treat to our evening we were visited by Dr. Felice for what we thought was going to be routine checkup and idel chatter about his day. We were right about the checkup the rest was a pleasant treat for all. Though no money exchanged hands and no tickets were issued, Dr. Felice put on a personal magic show for Andrew, Gwen, Steve and I in Room 573 at Reston Hospital. We had the best seats in the house. The card pictured in this blog was from one of the tricks. The only thing that could have been better is if he would have been able to pull a rabbit out of Andrew's hat. Maybe next time!!!
We can never put a price on the overall care and personal attention that we have received at this hospital. Everyone knows us by name, greets us with a smile and has Andrew's overall wellbeing in mind at all times. Dr. Felice has gone above and beyond the call of duty to accomidate Andrew wants and needs .... and the Magic Show tonight was just one example of this.
If Andrew is doing as well tomorrow as he has today, he will be able to go home, sleep in his own bed and come back for outpatient chemo on Friday. Though it may not be Vegas .... you can feel the excitment in the air of the possibility of spending the night at home.
So for tonight, he .... stays in Reston (I mean Vegas!!!!)

Good night Piglet ... Good night Pooh ....

Groundhogs Day!!!

Much to my surprise, Andrew did great yesterday and last night. He only needed to take his regular dose of Emend and a pill of Pheregan (for nausea) every 6 hours. They left him hooked up to a Saline drip all night just in case he got sick or dehydrated, but luckily it was only a precaution that was unnecessary in the end. Better safe than sorry!! So it has allowed him to be awake and alert through the entire process. He even took a shower this morning, ate all of his breakfast (bagel, cream cheese, hot tea and a chocolate chip cookie), and has been doing work on his computer all morning.
So compared to the last hospital visit and treatment, there really is no comparison. He is handling this treatment with more of an open mind and understanding of his own body. As I write this blog, Zhlia, his amazing nurse at Reston Hospital, is starting his chemo treatment for the day. Each day is the same, Lexapro, Zophran for Nausea, Etoposide and then Ifosfamide and Mesna (for the kidney's) together. The entire process takes about 4 hours to complete. It reminds me of the famous Chevy Chase movie, Groundhogs Day. Every day is the same. The only difference from the movie is the outcome of Andrew's result. All we can hope is that he continues to stay positive and his nausea remains under control.
Keep Andrew in your positive thoughts today ....

TA,TA ......

Round 2 ... Ding Ding Ding

Today started out like every Maniac Monday.....up at 5:30, shower, breakfast, walk the dog, feed the dog, love the dog, clean up the kitchen, and out the door by 7 am. Most of you who know us as a couple, know that up at 5:30 and out by 7 am is not normal. This Maniac Monday is 21 days into Andrew's chemo treatment and the first 5-day treatment.
Andrew (Steve and I) checked into Reston Hospital at 7:30 am for his second round of chemo. This treatment is completely different from his first round of treatment. First off, the treatment is 5 days and only about 3-4 hours a day. Normally this treatment is an outpatient procedure but after Andrew's terrible experience with the first treatment, Dr. Felice and Dr. Thornton thought it would be better if he were under constant hospital care for Round 2... Ding Ding Ding. He will be receiving the chemo through the port in his chest instead of the pill form that would be given to him if he were able to do this as an outpatient. Andrew will be receiving Ifosfamide and Etoposide as his two chemo drugs and Mesna as his kidney/bladder rescue drug. He also started a new nausea medicine today, Emmend, which he will take once a day for 3 days. It is a time releasing medicine that will hopefully (please cross your fingers) help him to grin-and-bare this treatment with less nausea.
As a whole we are doing pretty well. Learning every day what Andrew can handle and what he can't. With his leg pain under control, we have been going on hour long walks every day to get him out of the house and active again. It's a nice time for us to just talk as well.
We also have house guests and help this week. Steve (Andrew's dad) arrived yesterday and Gwen (his mom) will arrive tomorrow evening. They will both be here until Friday helping out while Andrew is in the hospital and then my parents will come for the remainder of the weekend.
As the bell rings three times and he step into the ring again for the hard hitting blows that chemo tends to deal out, we want to thank everyone who reads this blog and thinks about Andrew every day. Our champ is working very hard to stay positive and healthy and is learning to take every experience and every day as it comes his way. The boxing gloves are on .......

TTLY........

Thank you Phil and Amy

At the moment, this may seem like a long shot of a Thank you... but Thank you Phil and Amy Mickelson for the autographed photo of Phil. As many of you who love golf, like Andrew, know the Michelson's have also been going through a personal battle with cancer themselves. Amy Mickelson was diagnosed with breast cancer in May and from what I read on ESPN.com, is currently undergoing her own treatment and surgery to beat this disease.
With a very sweet and heartfelt letter from Andrew's best friend, Phil and Amy were kind enough to lift Andrew's spirits with this very personal gift.

To Phil and Amy .... I'm sure the both of you have been asking yourselves the same thing Andrew and I have been asking ourselves, Why us? Why Andrew?.... I guess, why not. We, as I'm sure you are, are lucky enough to have a great deal of support and love from the people around you. It's this support that helps us to get through each day and look forward to the ones to come. Though we are not celebrities or in the public eye, I hope to one day bring more publicity to Ewing's Sarcoma and the young children that are effected by this disease. I hope that with Phil's celebrity influence, you and your family will be able to bring more awareness to cancer research so that one day in the near future families like ours don't have to go through the pain of this terrible disease.
Andrew and I promise to keep Amy in our thoughts ... please remember to keep Andrew is yours.

Thank you again......

Lost but surely not forgotten...

The ultimate realization that you are a cancer patient is when you begin to lose your hair. In an effort to preserve his beautiful head of curly black locks, Andrew's dad and I cut his hair back to a manageable length over 2 weeks ago. But today while he sat at work, trying to keep his mind busy, his hair paid the ultimate price for the strength of the chemo and has begun to fall out. I think you can only prepare yourself so much for what the treatment will do to you physically and mentally. Luckily, I remind Andrew everyday that though he may be and now look more like a cancer patient, it's your overall attitude that will determine how he fairs during this process.
Andrew's attitude has had its ups and downs over the past few weeks but with the love and support of our family and friends (and the extra Lexapro that crush up and put in his cereal every morning -- just kidding, or am I) I know he's going to get through this too.


Overall he had a pretty good weekend and even made it to a BBQ at Rob and Courtney's house yesterday. Though he was tired and we cut our visit short, it was nice to be around people who were talking about other things than cancer. Thanks to everyone who was there who kept him laughing and entertained (as you always do). It was a wonderful distraction for both of us and I hope we can do it again soon.

We also received a welcome and unusual surprise this weekend with which we are not sure who to thank. In the mail on Saturday, Andrew received an autographed photo of Phil Mickelson. The strange part was that there was no note attached and no return address on the envelope. We would love to thank the party responsible for this kind gift, but no one has yet to come forward to claim their Thanks!! So if this person/party is reading the blog, Thank you and please come forward for personal recognition!!!

For now, it seems as though the rest of our week will just be filled with work and a doctors appointment on Thursday for Andrew. Andrew will be checking back into the hospital next Monday to begin another treatment cycle. This one will be a 5-day inpatient regiment. The doctors hopes to keep his nausea under control so that his 5-day treatments can then become outpatient in the future.

So as Andrew begins to lose his hair, I ask that all of you remember that his hair may be an outward reminder that he has cancer but it does not change anything on the inside. When I first met Andrew, his hair was long, curly and down to his shoulders. He reminded me of Pauly Shore in the movie, In the Army Now. He used to say that his hair was his power and strength and that he couldn't cut it for fear the two would go away. I now think the opposite. I think his power and strength is in losing the hair and still having the strength to fight. The hair loss is cancers way of telling you that it has allowed the chemo to start killing healthy cells off too but if we never let it kill Andrew's spirit, his hair is all we will allow it to take. So to the cancer and the chemo that is trying to rule our lives I say, "You may have the hair for now and it may be lost ... but to Andrew .. the power and strength will never be forgotten!!!"

Ciao .........

Just the 'three' of us .....

Life as we know it has gone back to 'normal' today. Andrew's parents went back home to New Jersey to see their own dogs and take care of Jeremy for a while. Gwen thinks Jer feels left out -- but I think he's enjoying their big house, pool and hot tub while they are gone ... just me.
Andrew had a restless night and a sleepy morning but after a big home cooked breakfast (thanks Gwen) and a little nap, he felt like going in to work around noon today. I'm glad that he's at work and keeping his mind busy. He has a doctors appointment on Wednesday morning to have blood drawn to track his counts and an MRI on Thursday morning.
But life in the Waxman house is going back to 'normal' tonight... Dinner, followed by an X-box game in the basement for Andrew and a little cleaning for me, coupled by exactly 10 minutes of play with the dog... before he is tired of us and goes to dig up his dog bed and comforter and nessle in for long summer evening nap before retiring to bed.
For now ... or the next 2 weeks at least, we are looking forward to.... it's just the 'three' of us.

Au Revoir, for now ..........

Hair today ... Gone tomorrow

It is hard to look at Andrew and ever believe that he has had such a bad week leading up to today. Last night he woke up and for the first time asked for food .... I only gave him Saltine crackers but it was the first sign that the real Andrew was finally coming back to life. He woke up this morning and asked for food.... real food, something with real taste. Then he asked for eggs ... we compromised and he had dry toast, Cherrios and hot tea.
Andrew also spent some time at the hospital today getting a 2 hour Saline infusion to help flush his kidneys of the chemo and get him back on his feet faster. I also gave him a shot of Neulasta last night which will help to increase his white blood cell counts and keep him healthier in the weeks to come.
Andrew continued his eating streak at the hospital and ate a container of soup and then came home and had 2 turkey sandwiches and another container of soup. And for dinner he ate a piece of baked chicken and pasta and he finished his dinner off with a bowl of sherbert. That may not seem like much, but to us its a huge breakthrough. This is the first day that Andrew has kept anything of substance in his tummy since Monday at dinner...... and by the way its Friday. What he really wants to eat right now is a quarter pounder with cheese from McDonald's but he will have to settle with a homemade burger for now ... no fried or fatty food.
He also decided to cut his hair tonight and beat the chemo to it. As you can see from the pictures he looks absolutely adorable with short hair.
Life as we know it is starting to come back to a new normal and I'm very thankful for that. Remember to keep Andrew in your thoughts.

Farewell........

Out like a light

Tuesday was a very uneventful day for Andrew. Due to the Ativan that he was given for his nausea, he actually never really woke up yesterday, except for to use the restroom a few times. So as you can imagine, his nausea was kept under control but he was completely "out like a light" all day long.
Dr. Felice said that Andrew may need to be injected with Ativan when he comes in for treatment and that we will just have to deal with the fact that he will sleep through the 3 day treatment. The only real downside is that he hasn't eaten anything since Monday at dinner. He has only had a few glasses of water when he was awake.
On the upside, it does make him a very easy patient to take care of. Today is Wednesday and hopefully we will be going home today as long as his counts are fine. He has an MRI this afternoon and its parent-swap day as well. Gwen and Steve will be here this afternoon and after a group dinner together at our house, my parnets will leave and Andrew's parents will stay the weekend to help out.

Lights out .......

Just A Spoonful of Sugar .......

So lady and gentleman the wait is finally over. Andrew began his long and tiring chemo treatment on Monday at Reston Hospital under the care of Johns Hopkins. He checked into the hospital at 7:30 am and after a battery of questions he began his 2 hour long saline drip. Saline helps the chemo not to burn the veins when it enters. Around 12 noon the first 2 actually drugs were hung to help protect Andrew's kidney's. They are called recovery drugs. The chemo is so potent that recovery drugs are necessary every few hours to protect his vital organs, especially his kidney's, from failure. Finally around 2 pm, the real stuff was hung. The drip will hang for 48 hours and be infused into his mediport in 20 ml. increments. That's about 1 1/2 teaspoons an hour. That tells you the strength of the drugs. The other 2 drugs that complete this combo were given in shot form into one of the splits in his port.
The nurses here at Reston are great. Andrew has a private room and bathroom/shower area which is great. His also has 2 huge windows that allow lots of Virginia sun to shine in on him. In general, Monday was a pretty uneventful day. He only needed one shot of anti-nausea medicine and a few extra pain pills. They are keeping the pain under control for him. His only real complaint was that one of the chemo drugs makes him hot but we are able to control that with a wash cloth and ice and his also gets uncontrollable hiccups -- which in my opinion are so funny. He of course, does not find them as funny. But with a cup full of warm water and a spoonful of sugar, the nurses have been able to keep them under, some, control.
Though I did not spend the night in the hospital with him so that he could get some sleep, I've learned from the nurses on staff that he had a little bit of a rough night. He couldn't sleep and felt sick most of the night. They were able to help with another anti-nausea shot but he still didn't sleep that much.
At some point this morning he did fall back to sleep and is currently in a deep slumber right now, which I am thankful for. At about 10 am they will hang another recovery drug for 30 minutes and Dr. Felice, his oncologist, is back from vacation today and will be at the hospital to see him.
Linda and Pete will also be making an appearance at some point around lunch. Mom has been great and has done all of our laundry, played with the dog and is even cleaning the house today. Dad mowed the grass which took him all of 3 minutes (since our lawn is the size of a postage stamp). He proceeded to then cut parts of the common area and continuously asks what he is to do with the rest of the day now that he has killed all of 5 minutes total. He jokes that it takes longer to put gas in the mower than it does to actually do the cutting -- we can't all live on 8 acres Big Man!!!
But Andrew is doing well. Chemo is tuff on everyone but with lots of family help and a few laughs along the way --- will help the medicine go down!!!

UPDATE THIS AFTERNOON
Dr. Felice has helped Andrew out and come to the rescue. Andrew is now getting a shot of Adivan every 6 hours to help with nausea. The side effect is that all he does is sleep now. The doctor said sleep is better than anything for him, so currently he and my dad (who is in the recliner) and taking a long siesta.

In the City of Blinding Lights

Yesterday, Andrew and I (and his parents) traveled to Memorial- Sloan Kettering Hospital in New York City to meet 2 doctors for a second opinion of Andrew's diagnosis and treatment. Dr. Carol Morris, Orthopedic Oncologist and Dr. Lenni Wexler, Peds Oncologist were both very helpful in, again, walking us though the treatment process and Andrew's diagnosis. Since Andrew's case is so rare, there are only about 300 cases per year of Ewing's and far less of those are adults, you can image that everyone wants to have him under their care. Some Sarcoma doctors may go there entire career and never run across an adult case that they get to treat. With that said, we feel comfortable with the decision that Dr. Thornton has made at Johns Hopkins and he will be continuing his treatment under her care.
Andrew will begin his 3 day hospital stay on Monday June 29th in Reston Hospital in Virginia under the daily care of Dr. Felice and the overall care of Dr. Thornton at Johns Hopkins. The option of surgery and/or radiation or a combo of the two, will be discussed and revisited around weeks 9-12 of his treatment. A decision will be made then about how to proceed.
As you can imagine we are all very exhausted and hope to take the weekend to sleep and get ready for the long week ahead. Linda and Pete (my parents) will be coming to stay with us from Sunday to Wednesday of next week and then Andrew's parents, Gwen and Steve, will be with us from Wednesday through the weekend. We are very lucky to have supportive parents, who just happen to be teachers and have the summer off (or in my dad's case have every day as Sunday -- Mr. Retired), who are able to help out.
We really appreciate all of our friends who have also offered to help in any way needed. We promise to take you up on your dinner offers and movie nights once we get this treatment started and can better predict Andrew's schedule.

But for now, I bid you adieu ......

WE ARE.......

I guess if Andrew has to have cancer, I'm glad that he has Johns Hopkins as a hospital and Dr. Katherine Thornton on his side. Dr. Thornton is young, outgoing and optimistic that with a lot of hard work will be able to beat Andrew's cancer.
Since Dr. Thornton is located in Baltimore and we live in Northern Virginia, she and our oncologist in Reston, Dr. Felice, have decided to work together so that Andrew does not have to travel to Baltimore every time he needs treatment. That is more of a relief than I can ever express especially after making the drive yesterday. I felt like cancer was going to be the easy part of situation -- the driving was going to be the scary part. (HAHA, I'm a bad driver, I know. I learned my driving skills from my mother!!!)
Andrew will begin chemo treatment some time next week (probably Thursday) after he gets an EKG, Chest CT and full spinal MRI. They are the last tests that need to be done so that treatment may begin.
His treatment will be broken up into a few section by both the Chemo treatments itself and the surgery that will interrupt in the middle. In total with the Chemo-Surgery-Chemo regiment, it will take about 49 weeks to complete. If anyone's counting that's about one year from now, or right around Andrew's 30th birthday!!!
The treatment will go as follows:
3 days in the hospital receiving the chemo regiment: vincristine (Oncovin®), dactinomycin (Actinomycin D®), cyclophosphamide (Cytoxan®), and doxorubicin (Adriamycin®).
then 21 days off
then a 5 day regiment (Monday - Friday) of outpatient (about 2-4 hours a day) of : ifosfamide (Ifex®) and etoposide (VePesid®, VP-16)
then 21 days off
and complete the cycle again.
After 4 full chemo cycles or 12 weeks -- Andrew will have surgery to remove the leftover tumor and any infected bone.
No chemo during recovery but soon after he will begin the regiment again
3 days in the hospital
21 days off
5 days outpatient
21 days off
3 days in the hospital
21 days off
and then for the rest of the time
every 21 days he will have the 5 day treatment until complete.

When he is finished and given a clean bill of health, which I know he will, he will only need to have scans 4 times a year for 2 years and then bi-yearly after that until the 5 year mark to make sure he's clear. Dr. Thornton is optimistic that we can beat this cancer and that Andrew and I can live a very normal life -- if you call our life normal!!!

Of course now that I've told you all of the good news, here's the catch: with the extremely high level of chemo Andrew will be receiving, he will be more susceptible to catching diseases that his body would usually be able to fight off. With that said, we appreciate all of the support and offers for visits but we will need to limit them and ask everyone to not be around Andrew or myself if you have come in contact with other people who may even have even just the common cold. We will also be vigilante's with hand washing and sanitizer when you enter any house we are in and are around us.

Andrew and I feel very lucky to have caught this disease in an early stage and are committed to winning the battle. I have recently found myself saying that Andrew is "Surviving Cancer" and not just "beating" it. The more positive the better.

Thank you all for all of your love and support .....

WE ARE ...... SURVIVING CANCER!!!!!!

Medi Port Today

So I have to admit, Andrew was a model patient today. He had a single Medi-port inserted under his right collar bone. The port will allow him to more easily receive Chemo when the time is right. The procedure itself only took about an hour. He came trough it with flying colors and even a smile on his face. He is only now experiencing a minor amount of pain and discomfort where the port was inserted. This pain is usual and will subside over the next few days. He will be able to resume regular activity in about 7 days -- you know, installing tile floors, mowing the lawn, moving furniture .. etc. etc.....
Tomorrow is the big day. The day we go to Johns Hopkins to talk to Dr. Thornton about Andrew's treatment options and when he will begin the regiment.
Cross your fingers and send good thoughts our way.

(picture is of Andrew before procedure)

Good-nite and Good Luck...........

Many Thank you's

Andrew and I are completely overwhelmed with the love and support we (and our families) have received over the past few days. We are also very grateful for all of the prayers that were said today in all of the Uniontown, PA churches in honor of Andrew. We know that all of you stand strong behind us as we go through this difficult time in our lives.
Tomorrow Andrew will be having the Cath-port inserted into his chest so that he is ready for treatment when it begins. Wish us luck because all of you who know Andrew are well aware that he is a terrible and dare I say, demanding patient. A day in the hospital with Andrew can seem more like a root canal without Novocaine. (Humor really is the best medicine.)
But in all seriousness, keep all of the love and support coming.

All our love,
Amy and Andrew (and Winston)

June 13, 2009

(The news that I am about to post will come as a shock to most of you who we have not had the opportunity to call personally.)

Hi Everyone. Andrew and I have decided to start this blog for our friends and family to track Andrew's progress with his treatments. On June 11, 2009, Andrew was diagnosed with Ewing's Sarcoma / Peripheral Primitive Neuroectodermal Tumours (PNET). For those of you who don't know what Ewing's/PNET is, please allow me to explain:

Ewing's sarcoma / Peripheral Primitive Neuroectodermal Tumours (PNET) of bone is a type of cancer usually found in children and young adults. The peak incidence is between ages 10 and 20, it is less common in children under 5 or in adults over 30. Ewing's s can occur in any bone in the body; the most common sites are the pelvis, thigh, lower leg, upper arm, and rib. The tumor is composed of small round blue cells. Ewing's sarcoma can also arise in soft tissue (extra-skeletal).
There are different stages of PNET/Ewing's. Andrew's cancer is localized in his hip.
So I am guessing that most of you are asking yourself the same question -- How did this happen? Some of you may remember back to October 2008, Andrew began to complain about a dull pain in his left hip. After returning from his firm's annual golf trip with the pain still continuing, he went to see an Orthopedic surgeon to discuss his situation. But by the time of the appointment, the symptoms had subsided and he was feeling better. This went on and on with several more visits to the doctor until about the April time frame. In April, after the doctor had exhausted all of his options of what it may be, he recommended that Andrew see a specialists who dealt with nerves. The nerve doctor prescribed a special pelvic MRI for Andrew so that she could see all of the nerves in his back/hip region. After review of the MRI by both of his doctors, we were recommended to Dr. Felice, our Oncologist, for an appointment the following day.
Dr. Felice and his staff wasted no time scheduling bone scans, more x-rays and other tests for Andrew the same day. By this time it was mid-May. It was determined that Andrew had some abnormalities and pockets of fluid in his hip. After seeing a special Orthopedic Oncologist who confirmed the abnormalities, a biopsy was scheduled for June 3. The biopsy was done at Reston Hospital and sent to Johns Hopkins University Hospital for the final diagnosis. On June 11, 2009, Dr. Felice met with Andrew, his parents and I to discuss the finding of the Small Blue Cell Tumors that are in Andrew's hip and the course of treatment from here.
Andrew will be having a Cath-port installed in his chest wall on Monday June 15, where the Chemo will be administered. On Tuesday June 16, we will all be traveling to Johns Hopkins to meet with Dr. Thornton, a Sarcoma Specialist, to discuss the treatment options for Andrew.
Andrew and I are well aware that this news may come as a complete shock to most of you -- as it has to us and our families. We are also well aware that some of you may not know what to say to us or how to help. Please know that it is ok not to know what to say.
We hope that with this site we can let you know Andrew's progress, post recent pictures and receive notes for Andrew to read. It is important to keep our spirits high during this time and remain positive and open to all treatment options available to us. We appreciate any and all support and encouragment.
Until next time ......