A message to all those affected by Cancer – and that’s most of you

Unfortunately, you are most likely affected by cancer.  Either you knew Scott, or you are battling, or have a friend or loved one that is. Maybe you came across this blog while doing the inevitable internet research to understand Ewing’s Sarcoma for yourself or a loved one.  I never realized, until Scott was diagnosed, that cancer is all around me.  Now that I do, I have some things I want to say.

I’ve been planning this blog post since Scott passed away.  I knew that I didn’t want to let this blog end negatively.  Scott wouldn’t have wanted that, either.  After all, he chose the name “Scott’s Chemo Adventure”, because we never had any intention – the thought didn’t even cross our minds in the beginning – that it would end negatively.  I’ve been putting off this post, despite what I hope to be a very positive message, because it’s still hard. I've learned it will always be hard.  But tonight, as I cried through the Stand Up To Cancer telethon (more on that below), I decided tonight was the night - because I DO still Stand Up – because I DO still believe that there is hope.  My best friend asked me how I can tolerate watching the show, and I told her I feel like I have to look this in eyes and “Stand Up”.  I don’t want to be defeated.  What happened to Scott and countless other beautiful people is real, and I don’t want to forget or pretend that it’s not.  And most importantly, I don’t want YOU to give up hope.

In my bereavement support group (more on that below, too) I met a woman who wears a pink rubber cause bracelet that says “Hope” in honor of her sister.  She took care of her sister for 8 long years during her battle with cancer that ultimately took her life.  I asked her how she can still have hope.  She said that the word “hope” meant so much more to her than hoping for her sister to beat this disease – she hopes for a cure, she hopes she and her family will heal, she hopes for peace, she hopes to help other people affected by cancer.  Her answer blew me away because I was feeling, at that time, like there wasn’t much to hope for anymore.  And I thought about her answer for days – I still do.  And I remember the many, many survivors we met.  We met amazing doctors, nurses, counselors, caregivers – people from one side to the other of the medical spectrum, and people from one side to the other of the patient, friends and family spectrum.  I learned from each and every one of them why I should have hope.

I’m not going to lie – for the first time in my life, I am scared of death.  It’s real to me now.  But I believe – with all of my heart – that if I, or any of you, were diagnosed with cancer, there is every reason to have hope.  Many, many people survive.  Many, many people get to go on with their lives, kicking cancer’s ass.  According to the American Cancer Society, an estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012.  That’s a whole lot of SURVIVORS!   More treatments are being discovered all the time and the odds are getting better and better.  Some of you know that I’m blessed to have a friend who is an over 8-year survivor of Ewing’s Sarcoma – and she was knocking it down before Scott ever even came into my life. 

It doesn’t always end the way it ended for Scott, and if you are battling, have battled before, or have a loved one battling – never never never give up.  Have hope.  Don’t get too scared.  Stay strong.  Just keep swimming.  Stay informed – but rationally.  Know that you are going to read a lot of scary things, and use those to your advantage.  Use the information to stay ahead in the battle – to ask about the options and know how to combat the side effects of treatment.  Know what to do to help you battle (both as a patient and as a caregiver).  Know what facilities and Doctors specialize in what types of cancers.  Know where to go to help you find a community of support and understanding.  Know how to take care of yourself and what to do to prevent cancer and detect it early.  Know that you, or your loved one, can beat this.

Know that even I, while missing Scott every day, still have hope.  If I can – you can, too. 

Please take a moment to learn about the organization Stand Up To Cancer:  http://su2c.standup2cancer.org/what_is_su2c.html.  su2c donates 100% of public funds directly into research grants and they are helping doctors and scientists in their fight to find a cure.  Even a little donation helps (and they have really cool shirts, too!)  J 

I launched a star in memory of Scott tonight.  You can check it out here:  http://constellation.standup2cancer.org/40850.  You can also donate to them by adding to his star, too.  They make it super easy to donate $10 just by texting the word STAND to 40202.  

If you are local and affected by Cancer, I want you to know about the charitable organization Gilda’s Club of South Florida (click here).  They are a non-profit organization that supports everyone affected by cancer in all ways.  They have support groups and activities for those battling it now, separate groups for friends, family and caregivers, for children, and the bereavement group I go to.  Gilda’s is not in a hospital, hospice or church – it is not a solemn place.  It is a place to go that feels uplifting and supportive, but doesn’t try to deny the impact, and the reality, of cancer.  They’ve been very helpful for me, and may be for you to.  I wish I had made time to go to their caregiver’s group while Scott was battling. 

There are several Gilda’s locations across the country, but there are other organizations out there that help, too.  I know support groups aren’t for everyone, but it’s been good to connect with other people who understand what I’m feeling.  I know “I didn’t know what I didn’t know” before this.  I didn’t have a clue.  None.  And now, it brings me some comfort to talk to others about my fears and feelings, and have someone looks me in the eyes and say “I get it”, and they truly do.  It helps me realize I’m not crazy for the way I’m mourning and grieving – that this is normal.

Thank you for reading my very long post, and thank you for your love and support throughout the past two years.  I’m not going to write any more posts here after this one – I don’t think there’s anything else necessary to say.  (Lord knows, I’ve said enough!)  J  If it made you feel just a little better reading this, then that’s the most I can hope for.  Please remember to Just Keep Swimming!

Love always,

Amy

Happy Birthday, Babe

July 21st

On this day, you would have been 34 years old, but you did more in your 33 years then many people do in a "full" lifetime. You are loved. You are missed. You are still making a difference in this world. Your memory will always be strong. We will always celebrate your life and the beauty you added to ours. You told me that you were sad because you weren't going to get to leave a legacy. I know you meant a child, but I told you that your legacy would be different - your legacy was the amazing impact on the people's lives you have touched - I hope you believe me now.

They better be throwing you one amazing party in Heaven! (Do they have Publix cake there??) :)

I love you,
Aim

2 Months

Hello all,

I can't believe it's been two months.  In some ways, it feels like years have gone by; in others it feels impossible that he's been gone two months.  It feels impossible because I still can't process how a light that burned so bright and so strong has been extinguished.  And that's the same reason it feels like an eternity has gone by in two months - I spend every day still trying to process this.  I know you all miss him so much, too.  I can't imagine how his coworkers feel walking by his now empty desk.  Our home is simultaneously comforting and sad to me.  I have to admit that I had no clue what dealing with a loss was like before this - none.  I wish Scott was here so I could tell him how amazing I think he is for coping with the loss of his Mother, Aunt Pam and his Grandparents.  I try to find the words to tell Memmom how strong I think she is for dealing with such loss in her life, and how much my heart breaks for her and everyone that ever has to feel like this.  I just didn't know what a true broken heart felt like.  Things are getting harder as time goes by.  I'm told by those unfortunate enough to have dealt with this that that is normal.  I try to look at all of those people and see how they've rebuilt their lives and stay strong enough to do the same.  I'm blessed to have help and people looking out for me and I am so grateful.  I am probably going to try to go to a support group for young widows next week and see if that is helpful.  I'm just trying to believe time heals and I hope that it does for you, too - I hope you all are ok.

His service was beautiful.  There were about 280 people there, and I know there would have been much more if those who couldn't make it would have been able to.  He deserved that - he is loved and he made a difference and, of course, there were so many people there to pay their respects.  I only know how many people were there from the sign-in book - I couldn't even bring myself to look around.  The Rabbi performing the ceremony was a great guy, and beautiful words written by his brother Greg, Uncle Bear, Holly & Neil and my Dad were read by themselves, the Rabbi or others.  I've been back to the cemetery once to see him - he has a beautiful view, at least. 

I tried to be strong and write Scott's PA, our beloved Liz, about a week ago.  I look back at my email and it was so full of typos and it didn't even sound like me who wrote it.  She graciously replied anyway and said that they were all still thinking of him and missing him.  Hello to everyone who reads this at Sylvester and 11 North.  I think of you all so often and am so grateful you all took such good care of him.  Hopefully has time goes on, I'll get the courage to come down for a visit.

Going back to work has been good.  I work for an amazing company who truly supported me through all of this.  Everyone has been great and understanding.  Routine, albeit a new one, has been good.  The puppies seem to be doing good, though I obsess over their well being all the time now.  They now have a dog walker that comes by to take them for long walks and play time every day while I'm at work - they love it.  Having them with me helps a lot, too.  Maggie is so sweet, and though Oliver is sweet too, he's still crazy and that makes me smile.

What would have been Scott's 34th birthday is coming up on July 21st.  I hope to be with his brother, Dee and my nephews that weekend, but please help me celebrate his life - the good times - on that day and honor his memory.  Listen to Billy Joel - watch Star Wars - hug your doggies - do anything that makes you think of Scott and smile.  It's so hard for me to get the bad thoughts out of my head yet - the memories of Scott who was suffering through the pain and anxiety in the end are still prevalent.  I'm trying to focus on the happy memories and the healthy Scott and the difference he made in your life and mine. 

I'll be honest - I've been dreading this blog post. I thought I'd do it soon after he passed, but every time I tried, I couldn't do it. Blogging before had a purpose - it was to let everyone know what was going on with Scott. I didn't even question that I had to do it - it was hard but had to be done. I felt like I had to do this tonight, to check in with you all and that I couldn't put it off anymore. I just wanted to say thank you to those that are still supporting me through this - those that have had to learn with me (or remember themselves) that every day is getting harder as reality sets in and affairs have to be handled, and those that are giving me the strength to keep going. I know it's not easy to not know what to say to me to ease the pain, but I appreciate that you still try. I miss him every minute of every day and I know he is missed by many. Thank you for keeping his memory alive.

I have one more post I want to do, and then it may be time to stop blogging here.  I'll talk to you all soon.

Love,
Amy

Rest in Peace

Loved ones,

Scott passed away this morning at 4:35am and is finally at peace.  The pain and fear is gone, and I know he is already watching over us.  His suffering is over.  "Rest in Peace" - I never truly understood those words until now. 

When I was writing my post last night, I was so fearful that he would continue to suffer and linger for many days, but it turns out he was waiting for his nephew's birthdays to pass like he said he wanted to.  The day he found out that he had only days left, he asked what date it was.  We told him it was April 16th, and he was scared that he would die on the 24th, on his beloved nephew's first birthdays.  He wasn't going to let that happen, and if you know Scott, that shouldn't surprise you at all.

The funeral will be on Friday at 10:15am.

The funeral home is the Beth Israel Memorial Chapel
11115 Jog Road
Boynton Beach, FL 33437
http://www.bethisraelchapel.com/

The cemetary is the Eternal Light Memorial Gardnes
11520 State Road 7
Boynton Beach, FL 33437
http://maps.google.com/maps/place?q=eternal+light+memorial+gardens&hl=en&cid=14839868057363837533

This will not be the last post on this blog.  In the coming days, I have much to say and share.  I want to post pictures and stories about the wonderful man he was, and I want all of you to have the opportunity to do the same.

I'm so, so sorry for your loss - it's not just me or his family - we know all of you will miss him everyday.  He touched so many hearts.  Please keep your good memories of him with you to make you smile.  He made a difference in this world.

Love,
Amy

Checking in

Friends and Family,

We are still doing our best to keep Scott as comfortable as possible.  The care he has been receiving at the hospice facility has been good.  He is sleeping all the time now and is no longer lucid or talking at all.  It's been devastating to watch him fighting with the pain and the anxiety, but now he's only stirring occasionally.  It's so frustrating to me that the cancer rapidly took over his body in the last several months, but the time it's taking for the suffering to end has been excruciatingly slow.  We all just want his suffering to end and for him to be at peace.  I'm not sure if he's still fighting inside or it's just the fact that, before cancer, he was totally healthy and strong - this isn't supposed to happen at his age.  It's so painful to watch my beautiful husband going through this.  Please keep praying that he can be taken home and be with the loved ones he's lost soon.

I will write a post when I can to check in with you all.  For those of you unaware of Jewish traditions, the funeral will be held very quickly after he passes - likely within 48 hours.  I won't be able to give you much more notice than that. 

There are no words to convey the gratitude myself and his family have for all of the support and kindness we have received.  There's so many messages I have not been able to respond to yet.  Please know that I am getting them and so appreciate them.  I know many of you have worried that I am alone and please be assured I am surrounding by love and support.  My family is here and taking care of me, our home and puppies.  Scott's family (which is large) are all here for me, as well.  I will have a long, different type of journey ahead after he passes, and my friends and family are all "on deck" to be there for when I'm ready for them.  Many of you (you know who you are) have been patiently waiting for this part of the struggle to pass and understand that I will need you more for the next part - thank you for that.

Love to you all,
Amy

An update - we've moved

Friends and Family, We have had to move Scott to a hospice facility today. While he was getting good care at home, the care he needs the most requires him to be in a facility so that they can give him IV medication and keep him more comfortable. The oral medications were not doing enough to control the pain and anxiety he is experiencing. He's been aware of what is going on most of the time (that started to noticebly decline yesterday and today) and he is scared. He doesn't want to die. It is the most horrible thing I have ever had to witness in my life. We made the right decision to move him and hope to have him feeling more comfortable soon. We are now on the Hospice floor at Florida Medical Center in Lauderdale Lakes. http://www.fmc-campus.com/en-US/Careers/Pages/default.aspx. As the evil cancer continues to take over, his ability to hold normal conversations is almost gone. I expect that with the increase in medicine, that will continue to be the case. He has been able to say his goodbyes, and we have been able to say ours. We all just want him to be at peace now. Please hope and pray for his comfort and a speedy, peaceful passing. I will continue to keep everyone posted as best as I can. Thank you to all that have sent their love and support and to the family and friends that are helping us get through this. Sadly, the hard part is nowhere near over - life without Scott will never be the same. With Love, Amy

Scott is home

Friends,

Scott is home and under the care of hospice as of yesterday.  Please feel free to come visit him when you are ready, if that's what you wish to do.

As his spouse, I get asked a lot "what do I say"?  If you don't know what to say, I totally understand.  I don't even know what to say to my husband other than I swear to take care of him and that I will love him forever.  There just are no other words.  If you come to see him, all you have to say is that you love him.  That's all that needs to be said.  He may ask you a question and get you talking about something else and if he does, just go with it.  Let me also assure you, that if it's too hard for you to see Scott going through this - I get that too.  I don't want to see Scott like this, either.  It's heartbreaking that a beautiful man, my beautiful husband with the most beautiful blue eyes I've ever seen, is so sick.  Just do what you can.  I understand and Scott understands.  We all cope differently and I completely respect that.

As of today, he's lucid most of the time.  When he sleeps, the drugs have the effect of making him say weird things and make a lot of hand gestures (he either writes, or drives a stick-shift in his sleep most of the time).  I think you'll be happy that you'll get to have a good conversation with him.  He is using an oxygen mask, but is able to take it off from time to time to say something to you.  Please know that we don't know if that could change day-to-day.  I will keep everyone posted on that as best as I can.

I've asked over and over again if he's okay with so many people coming by and he keeps saying yes - he wants to see his family and friends.  He wants to say goodbye.  Seeing his nephews made his heart sing, and his Godson will be down shortly.  He smiles a lot when they are around.  He's happy when people remind him of funny stories and moments they have shared with him. 

His coworkers friends came by today and you should have seen how amazing he was - making them laugh.  There were 7 of them and he had them all cracking up.  He told them when they left it was a honor and a privelege to work with them, then cried so hard after they left because he just wants to be able to go back to work and that this wasn't happening.

He's so considerate of others, even through this.  When the transport guys in the ambulance brought him home - he was still on the stretcher asking them if his wife could go get them something to drink.  Even at the hospital this week, despite being in so much pain and so uncomfortable, he'd tell the nurses and techs "bye man - have a good day!".  He's amazing.  We are all so lucky we've had him in our lives. 

If you don't already know how to get a hold of me to make arrangements for coming by, my email address is amygell88@gmail.com, or my cellphone is 954-464-0019.  Call or email me and I will try to respond when I can.  Please bear with me - my phone is ringing of the hook and my inbox is ridiculous - there's just so many people in the world that love Scott.  Also, please call before making a long drive here - things can change at any time and we may need privacy for a bit.

If you can't come see him and you want to get a message to Scott, leave a comment on the blog or email me - I promise I'll get it to him.

Please continue praying for his comfort.  The pain is sometimes very bad. Hospice is doing what they can and is here around the clock taking care of him.

Thank you for all the help, love and support so far - I know there's more to come and there's will be much more of a thank you to come from me later.

With Love,
Amy

P.S.  Before I publish this, I just wanted to include my all-time favorite picture of Scott.  He look so handsome - that smirk is so Scott.

The worst post I've ever had to write

Friends and Family,

This is the worst blog post I've ever had to write.  I have to tell you that Scott's chemo adventure is coming to a very unhappy ending.  We were told today that Scott has only days left with us - maybe as much as a couple weeks.  His cancer is evil and relentleness and will not stop.  The time has come for hospice and to focus on keeping him comfortable.  We took him to the hospital in Miami this weekend because his breathing has become extremely labored.  The tumors in his lungs have started to take over and there is a lot of fluid in his lungs.  There are now tumors in his elbow and his knee.  There will be no more tests to see if it's anywhere else - there is no need to know anymore.  All we have to know right now is that he will be comfortable, and his Dad and I will be make sure of it.  I know I normally share so many details with you about everything that's happening, but the truth it, it's not really relevant anymore.  This is what we need to know - that he's being taken care of and that he'll be kept comfortable.  His Doctors have all be en amazing and have done everything they could for him. 

I am devestated.  We are all devasted.  This is the most unfair thing i've ever experienced.  I know you are all going to ask if we're ok and the answer is no - but we will be in time.  We are as ok as we can be right now.  We hope to bring him home for hospice on Wednesday.  My next posts will be about when he's home and when you can come see him.  If you are able to come see him, please be prepared to see him tired, and heavily medicated.  I'm sorry you can't see him in a better state - things just happened so fast.

I'm so sorry that you and me and the world has to say goodbye to the most amazing man. 

Thank you for the love and prayers and support.

Love,
Amy

This week's chemo is done

Hello all,

I wanted to let you know that Scott is done with the week's chemo and it went fine.  He had a transfusion today, so hopefully that will get his hemoglobin back up and help his energy level.

During the week, Scott also had a CT scan of his brain.  The results were normal, thankfully!  The reason he had to have it is because he's experiencing some numbness on the left side of his chin, lip, teeth and gums.  It's in a small area, but it was concerning to his Doctor because it could have been a sign of neurological problems as a result of a metastases to his brain.  They needed to rule that out so they can move on and try to determine the cause of the numbness.  He is also losing some of his motor control is his right index finger.  His Doctor thinks that could also be like his elbow - a result of having to put so much pressure on his arms and upper body to get up and walk with the walker.  We see his Doctor again on April 16th, where I'm sure we'll discuss how to determine what's causing the numbness, but if anything else comes up about that before then, I'll let you know.

Today is Scott and I's 4th Wedding Anniversary.  Happy Anniversary! This is the second anniversary that we've had to spend with him having chemo, but we will hopefully make up for it soon.

We're preparing for a difficult week of side effects, but hopefully after next weekend they will start to clear. After that, Scott should be up for visitors again. 

Oliver has been having some tummy troubles the past couple days and today I tried to give him some Pepto Bismol - I thought I'd share with you a picture of a very unhappy, pink-mouthed puppy after unsuccesfully getting him to swallow some.  (I couldn't help but to laugh!)

While I'm sharing pictures, I don't think I ever posted this wonderful pic of Scott and two of his nephews, Jeremy (left) and Parker (right).  It's such a cute picture, and a rare one lately - he doesn't like to have his picture taken. 

In fact, one of the only other times he's let me take his pic lately was when he got to meet his third nephew, Wade (this picture is from last July). I guess Nephews are special enough to break his rule. :) 

Have a happy weekend everybody.  As always, thank you so much for your prayers and positive thoughts.

With Love,
Amy

More chemo....

Hello all,

Just a quick post to let you know that Scott was cleared for chemo this week.  He also needs another transfusion, which will be at the end of the week.  His hemoglobin is a little low going in to the week of chemo.  It will get lower after chemo, so he's trying to stay on top of it.

Chemo has been going fine.  He was in Miami yesterday and is back and forth to Deerfield the rest of the week.  His Doctor has ordered more scans on April 13th to see if this chemo is able to slow down the growth of the cancer.  We'll have updates a few days afterwards.  For now, it's all about getting through chemo and the week of side effects afterwards.  He'll be taking a break from physical therapy these next two weeks, as well.

He had a pretty good weekend.  The pain wasn't as bad (it has unfortunately gotten bad again this week with all of the effort it takes to get to and from chemo), and he was able to have a couple visitors.  Hopefully he'll be up for visitors again in a couple weeks.

I'll do another post to let you guys know how the week went.

We send our love and hope everyone is doing well.
~Amy

Checking in

Hello everyone,

There's not too much happening since the last post, but I thought I'd do a quick post to check in.  In my last post, I said that the side effects seemed to be passing - it turns out he had another several days before truly getting through them.  It was a long week for him, but he is feeling better now.  He has had a complication with the incision on his abdomen.  It is is leaking seroma fluid, which is a clear fluid that sometimes leaks from incisions after abdominal and other surgeries.  It's not serious and it's not uncommon, but does need to be taken care of.  Cultures are negative for infection, but he has had to see the Doctor several times this week to re-bandage the incision and is on antibiotics as a precaution.  The other two incisions are healing well.

He started rigorous physical therapy this week, as well.  The first session was tremendously painful, but today's was easier on him.  It really seems to be helping his mobility (which is a really, really good thing).  He's loving his new La-Z-Boy recliner we ordered before he was admitted to the hospital.  It's quite cushy and he's very comfortable in it.  The hospital bed is fairly comfortable for him, too - what's not comfortable is getting IN to it.  Physical therapy should be helping with that, too. 

His counts look good and he's still scheduled to begin the next round of chemo on Monday the 26th.  We meet with his main doctor in the morning, and then he'll do Monday's chemo in Miami.  The other days of the week, he'll be able to go to Deerfield for the chemo, as it is a shorter duration then the marathon chemo days he has done in the past (different chemo drugs have different requirements for duration, pre meds, hydration, etc.)  He's happy to not have to be admitted for this protocol.  If the same pattern of side effects happens again after this round, the week after the chemo will be challenging as he deals with the side effects.  They have a "late onset" with this particular protocol.  While he's feeling better this weekend, he may try to catch up on some phone calls and may feel up to visitors for a short time. 

We still don't know if this chemo protocol is working, and we still won't know for at least another couple weeks yet.  After next week, when he's feeling up to, they'll probably do a MRI at that point.  There's a chance his doctor will recommend a third round before the scans - we just have to wait and see.

Scott is really remarkable - he's still being very strong and still fighting hard.  He is so determined to get through physical therapy and get some of his mobility back.  Even though I'm his wife, I still can't imagine how he feels and how he is processing all of what he's going through.  I know he's scared, but he's able to keep his head up and keep fighting.  It is so admirable!

He misses talking to and seeing everyone, but is grateful for everyone's understanding that visits and conversations take a great deal of energy.  It can be very hard for him to focus and concentrate.  I, too, am grateful for how wonderful you all are.  The offers for help are so appreciated and the prayers/love/positive thoughts do not go unnoticed. 

I'll post an update after chemo is started and we've had the Doctor's visit.  In the meantime, we're sending you all our love.  I wanted to leave you with a cute picture I took the afternoon Scott got home from the hospital.  It's bad quality, but its subject is adorable - this is Oliver laying on Scott.  Oddly enough, he's laying right on top of the pelvic tumor - it's like he's trying to heal his Daddy.  It's amazing that they seem to just know. 

~Scott and Amy

Acclimating to home

Hello all,

Scott is still trying to get acclimated to being home.  To my surprise, he was struggling a bit with leaving the hospital because it feels like a "safety net" for him - he knows that if something was wrong, help would be there quickly.  He was there a month - that's a long time.  I understand now how he was feeling - being home has taken some adjusting to.  The hospital bed we have at home isn't nearly as nice, and he has to physically do more for himself.  He also started experiencing the side effects of the chemo once he got home, so he hasn't been feeling that great.  Thankfully, those seem to be passing now.  Neil is working from our house during the day until I get home from work so someone is always there to take care of him.

He doesn't want any company right now - not until he feels a bit better after the chemo & the side effects are gone.  Once he feels better, I know he'll welcome the change of pace.

Physical therapy is finally starting today.  He has a full day between that and having to go to Deerfield for labs.  (At least it's not Miami!)   He still needs a lot of assistance moving around, so i'm hopefully about physical therapy helping him.

We went down to Miami to get his stitches out on Monday - the incisions are healing nicely.

Overall, the pump is doing it's job and the pain is down a bit.  It's not gone by any means, but it's progress.  He is still on some oral pain medicines and will be for awhile.  If he continues to see improvement in his pain from the pump, they'll look at decreasing the oral meds further. 

Right now, he's scheduled for his next round of chemo on the 26th.  We'll know more as that date nears, and will no for sure whether or not he can have chemo that day.  I'll do an update sometime next week so that you all know the status.

Take care,
Amy

Scan results and discharge

Hello all,

This blog post has good and bad news, so I'm going to get the bad news over with so we can all end this post on a positive note.

We received the results of Scott's CT scan from Tuesday, and the cancer has continued to spread while he was off of chemo.  To be very honest, I was braced for tough news - we knew there was a very good chance the cancer was progressing since he had to be off of chemo for so long.  I was not prepared to hear that it has now spread to his lungs and the lymph nodes in his chest.  There are also more tumors in his liver.  His Doctor says it may have been there for a long time, but only now are the spots big enough to see on the CT scan.  It does appear that radiation has stopped his pelvic tumor from growing any more, and the radiation is still "working" on killing the cancer cells in that area.  It was all devastating to hear, but Scott says he's not giving up and neither are we.  We're still swimming! 

He has now finished his chemo for the week and we have very high hopes for these drugs making a difference.  He will have more chemo in a couple weeks, and possibly a third week of chemo before doing more scans.  Then we'll see the affect this chemo has had.  If it is working, I believe he'll go through more, but we wont' know the plan until it's discussed at that time.  More radiation is not going to take place anytime soon - he cannot be off of chemo for that long, as he has to be off of chemo for several weeks in order to prepare for radiation, and then of course be off of it while undergoing the radiation.  Chemo is the primary focus, but between chemo weeks, his other focus will be physical therapy.  He has made lots of progress this week and is walking an average of three times a day.  Working with a Physical Therapist has been very good for him.  He calls her Nurse Ratched because she doesn't take any of his crap and makes him push through it.  I like her! :)   (I had to Google Nurse Ratched, by the way - I always thought it was Nurse Ratchet.  Yes - it's clear I've never seen One Flew Over the Cuckoo's Nest)

So - on to the happy news - Scott is coming HOME tomorrow!  Chemo is done and he's staying overnight to receive his immune booster shot in the morning.  He should be home in the afternoon.  I can't wait to bring him home!

He has tolerated the chemo very well with not really any side effects to speak of.  He says these drugs make him feel "off", but it's so hard to understand what medicine is making him feel what way - he's on a lot of meds.

We now have a hospital bed smack in the middle of our living room (and it does NOT match my decor!) but I'm grateful we have that so that he can be comfortable as he continues to rehabilitate.  Starting on Monday or Tuesday, a Physical Therapist will be coming out to the house three times a week to continue working with him.

Also, the incisions from the pain pump surgery are continuing to heal well and are less painful for him.  He gets the stitches out on Monday.  His Pain Mgmt Doc has continued to increase the medication in the pump while decreasing his oral/IV meds.  He will still be on some oral meds for awhile, but should be continuing to decrease the amounts/frequency.  The pain pump is working.

There won't be a whole lot to update you all on for the next couple weeks, but I will do another post soon just to check in. 

Just keep swimming!
Amy

Chemo is a go!

Hello everyone,

I'm happy to tell you guys that Scott started chemo again today!  This is great news.  I know it sounds so weird for us to be so excited about chemo, but it's so important that Scott has gotten to this point.  He's fought for over 3 weeks to be well enough to start chemo.  He has still has a lot he needs to get through, but chemo is an integral part of his battle and today is a major accomplishment. 

This is the chemo he was supposed to start on February 13th.  These are two new chemo drugs, since he was not responding to the last rounds of chemo.  These drugs are used in Ewing's Sarcoma patients when they get to this point and they have seen very good results with these drugs.  He is still in the hospital and will stay there through the next 5 days of chemo.  It's best that he's supervised and have easy access to Doctors and Nurses while he's going through it.

More positive news - the pain pump has started working.  Since Friday, he has been walking 2 - 3 times a day down the hallway on his floor.  He has been given a new goal today to start walking 4 times a day.  It takes a lot of effort, he still needs the walker and is still very painful for him, but just the fact that he can get out of bed and DO IT is very good progress.  He has been working with a Physical Therapist and will continue to do so for awhile.

It was so great to be with him this weekend and have lucid conversations with him.  We are seeing one of the major advantages of the pump in real life - he's still on a great deal of pain mediciation, but since it's delivered directly to his spine and not throughout his whole body, he's not so loopy and drugged up.  This weekend, he talked more than he has in weeks. His twitching has decreased a lot and he's not doing all those weird movements and acting out his dreams.  I can talk to my husband again - i'm so grateful for that.  I can hear more peacefullness in his voice and it is such a relief.

We're hoping he can come home after this week.  (I know I say that every week, but this time it feels so much more attainable).  Once he's home, he'll still need a lot of care, and will probably continue to do physical therapy at home.  After this week of chemo, there will be another week of chemo in another 2 or 3 weeks.  Then they'll do more tests and see what kind of response the chemo is having. There may be more chemo after that.  Hopefully soon we'll get to see how the radiation helped his pelvic tumor.  He is having a CT Scan tomorrow to "baseline" his liver tumors so they can measure the response of the chemo.

I also wanted to share with you all that today is Neil's birthday.  He is, of course, spending it at the hospital with his son.  When Neil and Holly came up to see him yesterday, Holly got a little cake and we sang to him.  I know the best gift possible for him is to see Scott come home.  He is relentless - he will never give up and gives Scott all the love in the world.  The staff at the hospital loves him and is always so impressed that he spends almost every day and night at the hospital with him.  To him, he doesn't understand it - to him, it's just "what you do" and he's never thought twice about it.  The dedication Neil has is amazing, and while it's obvious that Scott will always be grateful for it, I want him to know that I will, too.  Happy Birthday Dad - we will celebrate "for real" soon!

I've seen so many patients over the past year going through their battles alone. I'm sure that if someone is alone, most of the time it's not for people not wanting to be by their loved one's side - they may not be able to afford to take off of work or travel, but there are situations where people just flat out are not there for them.  I know I would never have to be alone if it were me either and my Dad would be by my side too, but it's amazing what we take for granted sometimes.  Take a moment and be grateful for your loved ones today.

One more thing from me and Scott - thank you to Cathy for spending the weekend running my life so I can be with Scott, and thank you to our neighbors for mowing our lawn and fixing our mailbox (which somehow became unattached to the pole!).  The kindness of people always amazes me and I'm grateful to all of you for kindess, too.

I'll do an update later in the week and let you know how chemo is going.  Keep those loving comments, prayers, and positive thoughts coming!

With Love,
Amy

Starting to feel a little better

Hello all.  Beware – very long post ahead.  J

Scott is feeling better today – he’s recovering very well from his surgery.  His incisions hurt, but that’s to be expected and should feel better in a few days.  He is starting to see a little pain relief from the pump and is able to move his leg in the bed a little bit.  They’ve had a compression stocking on his leg to help with the swelling. 

The Doctors are slowly decreasing the IV/Oral meds that he is on and will continue to even everything out over the next few days.  They are going to try to get him walking again today – even if it’s just a few steps.  I feel such a sense of relief that he got through surgery and we see a small amount of progress – any progress is good and we still have very high hopes that the pump ends up bringing a lot of relief.

He is still in the hospital and may be through next week, as well.  He’s still not mobile enough to come home and they still have to get his medicines adjusted to be able to be taken at home.  It’s been hard on all of us (Poor Neil is still there every day I’m at work and every night – he’s such a Trooper!) but as much as we want him to come home (and that is so so so so much!) we don’t’ want to rush things and him be uncomfortable.  Additionally, they really hope he can start chemotherapy on Monday.  Because that chemo will be hard on him (because of the side effects and because his body has been through so much in the past 3 weeks), keeping him in the hospital through those 5 days will allow them to constantly monitor him and help keep him comfortable.  I will keep you posted if chemo can start on Monday or not.  This remains the biggest goal after pain relief – we need to get back to treating the cancer systemically and address the tumors in his liver.  They are going to a scan before chemo starts so they have a baseline to measure the success of the chemo against.

He had his last radiation treatment yesterday.  They did have to sedate him again, but he’s done with those now and we’ll know more in a couple weeks about the effect that it had on the pelvic tumor. 

I wanted to share with you all more information about the pump and how it works.  Surgery ended up being a full 6 hours on Wednesday – 3 hours for the actual surgery, 2 hours of prep and 1 hour of recovery before we could see him.  (Those were some of the longest 6 hours of my life, but Neil and I got through it together).  The surgery took awhile because you don’t want to rush threading a catheter through one’s spine.  The pump itself was inserted into his abdomen, about an inch underneath his skin.  It looks like a tuna can (not kidding).  We probably won’t be able to see it under his skin, but on super skinny people, supposedly you can. 

He has three incisions – one in his abdomen from the pump, one on his side to assist them with threading the catheter, and one in his lower back for the same reason.  They are relatively small – the abdomen is the biggest one.  The pump is the 40ml (larger) one and is filled with Dilaudid, since he seems to respond well to that drug.  It constantly delivers medicine directly into the spine in the amount of .5mg Dilaudid per day (to start).  He gets 4 extra infusions each day (every 6 hours) to help with breakthrough pain (I call them “freebies”).  To get these extra infusions, he uses a remote.  He puts it on his skin right over the pump in his abdomen, pushes a couple buttons and waits for the beep.  It sounds so crazy, but that’s really how it works!  If he tries to do these before it’s time, the device will record the attempt, but not let him. 

When he gets an MRI or other magnetic scans, the device is setup to stop when the magnet is detected and will restart after it’s done.  The pump batteries can last for 4 – 7 years.  He will hear beeping when they get low, or if there any problems with memory, the device being empty, etc.  When its batteries are out, a new pump is inserted.  Obviously, we hope Scott won’t need it for anywhere near that long, but many people live with pumps many many years. 

It was pretty interesting to us that the reps from Medtronic (the company that makes this pump) were there to assist and oversee the insertion of the device during surgery.  We met them and they were the ones who told us how the remote and pump work.

The pump started delivering the medicine to his spine approximately a ½ hour after they turned it on.  He will have to go back periodically to get the pump refilled.  It will likely be around every couple months.  We he goes in, they access the pump in his abdomen via a needle and drain any excess medicine.  They then refill it with a needle, as well.

More about life with the pump can be found here: http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/what-is-it/index.htm

He got this pump (Medtronic Synchromed II):  http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/our-drug-pumps-for-pain/synchromed-ii/index.htm

And the remote device (Personal Therapy Manager:  http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/our-drug-pumps-for-pain/personal-therapy-manager/index.htm

If you have any questions, feel free to let me know and I’ll try to answer them.

I hope you all have a good weekend!  I’ll be at the hospital all weekend again and will send another update Monday night to let you know what happens with chemo and how he’s feeling.

Love,

Amy

Surgery went well!

Hi all,

I'm sorry this isn't going to be very in-depth - it's been a long day.  Long story short - Scott did great today.  He is still in recovery - he will be spending the night there so he can receive immediate assistance (if needed) and be observed constantly - that's routine. No guests can stay overnight in recovery, so both Neil and I are home for the night.  I will email more details about the surgery, how the pump works, etc. tomorrow. Also - plans are still on for radiation tomorrow, but he will need to be sedated again beforehand.

Goodnight,
Amy

Pain Pump Surgery Scheduled for Wednesday

Hi Everyone,

The weekend remained challenging for Scott, as he is still struggling with the pain.  They increased meds and are trying new meds, but things still aren't working.  Additionally, his left leg is still swollen quite a bit.  As I mentioned before, the Doctors think it's a side effect of radiation and will go away soon.

I told you in this post about the "pain pump".  This is properly called an Intrathecal Pain Pump The amount of medicines he’s on is so high and they are causing lots of side effects (like the twitching).  The advantage of the pain pump is that it will deliver the medicine directly into the spine.  The ratio of medicine needed from the pump vs orally is 1 to 300.  In other words, if he’s taking 300mg of Morphine right now, only 1mg will need to be delivered via the pump.  His dosage will be higher than 1mg and will likely be a combination of medicines, but I’m not sure exactly what yet.  He will be able to control the pump and take as much medicine as he needs, but it will be metered so he doesn’t accidently give himself too much at a time.  He will have to go in periodically to have it refilled.  It’s controlled by a computer.  If not for this scenario, I would think it’s actually pretty interesting – here’s a good internet explanation:  http://www.mayfieldclinic.com/PE-PUMP.htm

The surgery itself will be much like the surgery in which they implanted his port.  It usually takes about an hour and a half, but may take longer.  It’s recommended we act quickly on this, as his counts are fine, no fevers, no infections, etc – if those are present he cannot go through the surgery.  There are normal surgical risks, but nothing uncommon or extreme.  He will be under general anesthesia for the surgery.The benefits are that he will hopefully see some relief immediately – hopefully as much as 30-50% reduction in pain.  It will also eliminate many of the side effects from the high doses of opiods he’s getting.  It is not going to get rid of the pain 100%, but we still hope that between this, the inflammation from radiation getting better, and starting chemo again will all come together to provide him much relief.  None of this is an absolute science and every person handles these things differently.  Hopefully, Scott will be able to come home soon after this is done.

I will do a post tomorrow night to let you know all is okay.  Keep your prayers, postive thougths and crossed fingers coming.  :)

Love to all,

Amy

Still trying to manage the pain

Hello Friends and Family,

It's been another long week for Scott.  He is still in the hospital because they still can't get the pain under control.  The Doctors are trying as hard as they can - there is much hope that radiation will make a big difference.  He was doing better earlier in the week, but the little amount that the pain decreased went away last night - the pain started increasing again.  We hope (I know that sounds weird) that it's because of the radiation.  The Radiation Oncologist had told us at the beginning that the pain may increase for a short time during radiation.  This is because the radiation is damaging the tissues and muscles around the tumor.  The Doctors are thinking the pain is because of muscle inflammation.  Because of the pain, he was not able to have radiation today.  He has three radiation treatments left next week.  They have also increased his pain meds again in hopes of making him a bit more comfortable.  At this point, he will likely stay in the hospital at least through all of his radiation treatments.

It also turns out that we won't get to know how much impact the radiation had on shrinking the tumor for a few weeks yet.  Radiation keeps working to kill the cancer cells even after the treatments are done.  Because of this, there's really no point in doing an MRI or CT Scan right after radiation is done.  They will wait and see the real affect it had.  The hope is still that he can start chemotherapy again a couple weeks after radiation is done.

The good news is that he seems to have gotten over the fevers for now.  They have not seen any signs of infection - the fevers are likely from the tumor.

We also heard back from the Doctors at Moffit Cancer Center in Tampa.  Their "Tumor Board" reviewed Scott's scans and said that he seems to be getting the best care and treatment he can.  It made us feel better that all the right things are happening to get him better. 

I feel like you guys probably have more questions that I'm not answering, so if you do, just let me know.  As always, we all very much appreciate your love and concern.  It's a true blessing to be surrounded with so much Love.

We keep swimming!
Amy

A few steps in the right direction

Hi guys!

I'm very happy to report that Scott was able to walk a bit today.  He made it from his room to the nurse's station.  He hasn't taken more than a couple steps since before being in the hospital, so this is great news and big progress.  He's so tired of being confined to the hospital bed - he's determined to get better.

Additionally, radiation went a little easier today.  It's still painful, but a little less.  We're hoping this means the radiation is shrinking that stupid, evil tumor.  With any luck, he should be able to go home by the end of the week, at the latest.

I'm back to work most of this week, but Neil is still pulling all nighters so that Scott isn't alone.  He's a pretty great Dad to him. 

Scott's fever spiked again Saturday night and Sunday night, but the Doctors are holding off on giving him more antibiotics for now, since they can't find any signs of infection.  His fever was back to normal this morning.  The best guess is that it's from the tumor and/or his body fighting the tumor. 

I'm getting asked a lot about when we'll know how much the radiation is working and the answer is - we don't know.  No CT Scans or MRIs have been scheduled yet, and may not be until the end of his 10 treatements.  That would put those at mid-next week.  (The 28th should be his last day of radiation, for now).  As I've mentioned before, we're hoping for very positive news about how the tumor has shrunk after radiation, and then after a short rest, we move on to Chemo again.  And we're praying that chemo is going to knock the rest of the cancer outta the park!

I also wanted to take a quick minute and thank the lovely little girls who live across the street - Mya and Michelle (and they're Mommy Eileen) for giving our doggies the extra attention they so deserve.  They take them over their back yard to play with their doggie, or all the kids, parents and dogs are out front of the house and running them around.  By the time I get home, they're like "oh, hey mom - where's my bone?! and they're off!  They are getting so much love and attention and excercise just by doing that - and that's way more than we've been able to provide them lately. 

So - a BIG GRAND GYNORMOUS THANK YOU from me, Scott, Ollie and Maggie.  :)

Please keep the love coming - it sounds like someone is starting to answer our prayers.

Have a good night,
Amy (& Maggie AKA "The Angel" & Oliver AKA "Rotten)

A little more progress and feeling helpless

Hello all,

I'm happy to report that we are still seeing some progress - a small amount every day, but we'll take it.   Scott had his third radiation treatment on Friday, and will not have any other radiation over the weekend.  The pain is starting to decrease slowly.  He still cannot move his leg without assistance and cannot walk, but he can do a little more.  I guess the best way to explain it is that he feels a little more "comfortable".  A week ago, just sitting still was excruciating - now he can be a little more comfortable. 

The irriatiation at being here a week now is starting to show - it's so hard on him.  He wants to be home with his doggies and his surroundings.  The staff at Sylvester is great and are taking good care of him. These are not private rooms like at UM Hospital - he had a "jack ass" of a neighbor earlier in the week, but he has a nice one now.  I don't know his name, but this man has obviously been a fighter.  I'm not sure exactly what kind of cancer he has (he has a heavy accent and it's hard for me to fully understand him), but he told me that his first cancer diagnosis was at 27.  This is his 3rd reoccurance and he's 72 now - he must be a very brave man.

We're not totally sure if the epidural is part of what is helping, or if it's the right combination of doses of pain meds, or if it's radiation - I'm not sure that we could know - so we'll just keeping doing everything we're doing.  He still has 7 radiation treaments.  If the epidural doesn't appear to be working, they may try another one higher up (a lumbar epidural), and if radiation doesn't significantly reduce the pain, a "pain pump".  The pump is inserted inside of his body (just under the skin), much like his port.  It will allow the medicine to be inserted directly into this spine.  Using this technique, much less medicine is needed to alleviate the pain.  Again, this will only be looked at if radiation isn't working - that should not need to be the case.

His fevers are still coming and going.  They are very likely from the tumor and/or the pain, but they cannot risk infection, so he will have to give him more antibiotics just to be safe.

Today has been pretty uneventful and tomorrow should be the same. 

The one thing I hear most from everyone (besides the prayers, well wishes and loving thoughts) is "I feel so helpless".  I understand this well.  Neil and I are by his side all the time and even we feel helpless.  This past week was the most difficult (and scary) time of this journey yet and everyone wishes there was something they could do to help.  Some of you are in a position to help with the dogs and we thank you so much for doing so. 

Besides that, all I can say to you is to keep sending him your love.  Don't feel bad about being unable to help - we know you want to and we love you all for it.  Thank you for staying involved and caring about Scott and his progress - you are helping more than you know.

I'll send another update in a few days.

Love,
Amy

Seeing progress!

Hello all,

Thank you so much for the kind words and comments you send to Scott.  I'm sorry I haven't gotten to reply to all the wonderful comments, emails, cards, etc that you all are sending, but please know he is getting them and we are grateful!  They really do make him smile and feel good.

We are finally seeing progress today!  The pain medicines are starting to make a difference.  There are several of them, and the manner in which they are given is a carefully orchestrated regimen - but the Doctors know what they are doing.  One in particular, the Fentanyl nasal spray, makes a big difference in breakthrew pain control needed for a major push - like having to get through radiation.  And he did just that today - he got through radiation!  It was not easy on him, but it was much easier than yesterday.  He will hopefully continue to be able to receive his radiation treatments and we'll see the tumor starting to shrink soon.  This is radiation treatment 1 of 10 for the next two weeks.

He is also going to get an Epidural tomorrow.  It may take a couple days to fully take affect, but hopefully it will last for a couple days and help significantly.  The Doctors hope that by the time it starts to wear off, the tumor will have started to shrink and things well even out.

He's still running mild fevers on and off, but that is expected because of the tumor and the pain his body is fighting. 

Another positive piece of information is that Scott's pelvic bone with the tumor (the Ilium) still looks very good on xrays, considering there is a large tumor there.  What bone is there looks solid and strong and that means that the bone should be successful in filling back in once the radiation starts shrinking the tumor.  Also, if the tumor responds well to the radiation, they may be able to radiate the liver tumors.  Scott's type of Cancer typically responds well to radiation - unfortunately, other types of Sarcomas do not.  Getting back on chemo is still the major goal.

Neil is still at the hospital with Scott.  I don't know what I would do without Neil and Holly - it's truly a team effort.  Neil stays overnight with him when I have to come home and take care of the dogs and does everything for Scott.  Holly is doing all the administrative work to research and apply for clinical trials.  If I had to do that, I would manage, but I'm so grateful she is taking care of that.  She is also taking many calls for updates that I cannot get too.  Another big thank you to her and my friends that are helping take out the dogs during the day.  We very much appreciate it.

Sending our love,
Scott and Amy

Pain Management & Radiation

Hi all,

Sorry for the delay in posting - the last several days have been very hectic.

It turned out that we had to delay chemo again - Scott was admitted on Sunday in order to get his pain under control.  Last Wednesday night, he was trying to shimmy into bed and felt a sharp pain again - similar to what happened about a month ago after getting sick.  He couldn't move again and spent days like that.  His Dad brought over a recliner and Scott was able to get a tiny bit more comfortable, but the pain grew to be unmanagable - plus he started running fevers at night again - so we talked to the Doctors over the weekend and he was admitted.

He is still at the hospital (Sylvester inpatient wing) and probably will be for the rest of the week.  These past several days have been the hardest on him, by far.  The process of getting the pain under control is not easy and takes quite a bit of time.  They have to find the right medicines, the right doses, and increase in such a way that does not cause other problems.  In order to go through xrays, he had to get up on a hard, flat, high xray table and that was horrible - but he had to do it to make sure no bones are broken.  (They are not, thankfully)  They still don't know exactly what's causing the pain, other than the assumption that the tumor has grown and is pushing up against many nerves.  I've discussed this on the blog before - the tumor is surrounded by major nerves, like the Siatica.  They are trying medicines - more than I want to list out here - and not much is working so far.  One of the likely next steps is some sort of injection - either local nerve blocking or even an epidural.  They have to do something significant to get Scott out of pain, able to move at least a little bit, and be able to get through his treatments.  There was no way he could get to and through chemo sessions in the condition he was in.

The other change is that the Doctors want to start radiation as soon as possible.  We're still trying to understand the differences, but this is not the full 6-week radiation course that we discussed months ago - this is daily high-dose radiation to shrink the tumor and get him out of pain.  We're hoping the radiation works well, starts shrinking the pelvic tumor and, after a few weeks to recover, start chemotherapy again (the new protocal he was going to start on Monday).  As you've seen, plans are subject to change daily and we'll have to see what happens after pain management and radiation for a couple weeks.  The last time I mentioned radiation here I said it wasn't an option because there is a change that too much radiation could prevent more chemo later.  That's still a chance, but one we have to take right now.  The most important thing right now, by far, is getting him out of the unbearable pain he is in. 

The tumors in his liver are not being addressed by radiation right now - the pelvic tumor is the major priority, and again, if he can get back on chemo that will start to fight those.

He is tired and so so so over the pain, but he's still fighting hard.  He has endured more than anyone should ever have to and still has more to go, but he's done amazing.  So amazing.  He's so strong, and even though the pain is getting to him, Neil and I are trying to keep him strong and positive.  One of us is with him all the time. 

We're hoping that they can manage the pain enough to start radiation tomorrow.  I'll write again in a few days with an update.  Please keep your words of encouragement coming for him - he needs to fight and stay strong, and the love of his family and friends helps him do that.

Thanks for your love and support.
Amy

Time for a new plan

Hello all,

Unfortunately, today's MRI results and Doctor's visit brought more bad news.  The pelvic tumor has not been responding to the new chemo.  In fact, it has grown 10 - 15% since the last scan a month ago.  So instead of proceeding with chemo today, we have a new chemo plan - Scott is being moved to a new chemo protocal that is used by Ewings patients when the first protocal is not creating a positive response.  These will be two brand new chemo drugs to Scott.  He'll start this treatment on Monday.  It will be for 5 days, but it will be a shorter duration of time to treat, so he can have the treatments in the Deerfield office and come home each night.  One of the chemo drugs will be administered via IV, the other via tablets.  He'll do this next week, and then again in hopefully 3 weeks (4 if his counts are too low).  After these two cycles, we will again see if the tumor has stopped growing, or even better, starting to shrink.  If there is a positive response - he will likely keep going with chemo as much as he can tolerate.  His Doctor says there's a 50/50 chance the new drugs will have at least some positive affect.  If there is not a positive response, our options are very limited.  Really, the only option at that point may be a clinical trial. 

If we go with a clinical trials, there are no guarantees and it appears the only active ones in which Scott meets that criteria are out of state.  We would have to either travel to there frequently or relocate during the trial.  It will be hard, but I know we'll make it work - we have to. I know you guys are asking me through the monitor "what about surgery or radiation??"  Surgery is not recommended by his Doctor because of how long he would have to be off of chemo in order to prepare and recover - and he will need a lot of recovery time.  He said there's really no point to surgery if the cancer is living elsewhere in his body, and we understand that rationale.  As for radiation, he cannot have radiation and chemo at the same time - it will be too toxic.  Additionally, he'll have the same issue with being off of chemo for too long and the added risk that the extensive amount of radiation he'd need will prevent him from being able to receive more chemo afterwards, if he needs it.

We are also looking at second opinions and may soon travel to the Moffitt Cancer Center in Tampa for a consultation - they have a Sarcoma Center and they apparently have a Ewings Specialist.  I don't yet know how much he's worked with adults versus children, but we're trying to get them to evaluate Scott's records without have to make an very painful car ride for Scott.  If they recommend other options - we would then head over there.  Sylvester in Miami and a very good place for treatment, and we know his Doctor is following all the known protocals that produce results for Ewings patients - it's just that Scott's body did not respond to the first round and probably built up a resistance to those drugs.  We're going to explore all the options we need to to save his life.  Scott's battle is getting even more complicated, but is by no means over. 

So far, we're still doing okay and don't really need assistance.  If the time comes that we travel for a clinical trial, you guys may see the requests for help coming pouring in.  :)  Please keep sending your prayers, positive energy and crossing your fingers.

We love you all and are so grateful for your support.  Just keep swimming!

~Amy & Scott

A quick piece of inspiration

Some of you know that there is NY Giants player (former Boston College) who is a Ewing's Sarcoma survivor. This was one of his tweets today:

@MarkHerzlich:
2 yrs ago I was told I might never walk again. Just WALKED off plane in Indy to play in The #SuperBowl. #TakeThatSh*tCancer

That was so freakin' awesome it gave me chills so I had to share with you guys.  

Go Giants!

On another note - Scott is feeling a lot better the past couple days - he even worked several hours the past two days and has slept in bed.  I wanted to pass along the good progress.  :)

Another setback

Scott was able to have chemo on Wednesday - his labs showed that his counts rallied enough.  That's great news - he needs to be able to receive his chemo treatments every two weeks.  The bad news, is that the PET Scan on Tuesday showed that the cancer has metastasized to his liver.  There are two small masses on his liver now - but "small" is an important word - and they may be able to be surgically removed them at a later time.  This was not the news we wanted to hear, but these two small masses are not the worst case scenario, either.  Scott's Doctors hope the chemo will also shrink these, or at least keep them at bay, and the focus will continue to be on the large tumor in his pelvis.

Scott's major challenge right now is being able to push through the pain.  He's amazing - he's been so strong and is trying to do what he can, despite the pain.  Things got very complicated in the beginning of the week - he has been getting sick on and off for the past couple weeks, and one time after/during getting sick, he felt a very sharp pain around the site of his pelvic tumor.  He literally couldn't move for hours.  The Doctor's were afraid he may have fractured his pelvis, but thankfully, an xray showed that wasn't the case.  They still aren't sure what happened - it may have been a pinched nerve in the area.  The next day or two, he was able to get around with a walker, but his mobility is challenged right now.  Today was a better day - only the cane was used for parts of it and he was able to lay down flat for a bit.  We think the Fentanyl patches are the culprit for the nausea, so he's looking forward to ending those and, instead, increasing the dosage of Morphine he's taking.  (Ok, not looking forward to it, necessarily, but anxious to not be sick anymore!)  We know that if he can get past the vomiting and subsequent pain, he will regain some strength to keep battling.

If the pain hasn't started decreasing after this chemo session, he's going to have another MRI before the next chemo session on the 8th.  (MRI on the 7th).  The Doctor's will see if the chemo is having a positive response on the tumor at that time.  If not, they will likely try a different chemo regimen, and there's a very good possibility of starting radiation in conjunction with chemo. Surgery is just not an option in the near future - he's body and counts are not strong enough and he can't stop the chemo for as long as he would need to in order to recover from the surgery.  We're reminded that cancer is like many other illnesses - there is sometimes some experimentation with medicine required in order to see what a particular person will respond to.  Once they find the chemo drugs that stop the cancer from growing (and radiation to shrink the tumor), then we'll see some progress in the right direction.

You all would be so impressed with him - many people would not be so strong.  He tries to laugh and make jokes when he can, and he just pushes through.  In discussion with his Doctors last week, they said how surprised they were that he was still working in between treatments.  Many people in his shoes would have taken disability, but he's still working.  I'm not sure if the mobility challenges will change things, but I pray they won't.  Being at work makes him happy and he loves his coworkers - they help keep him strong and positive (and the distraction doesn't hurt). 

I also wanted to thank you all for your continued offers of assistance.  I truly wish there was something you could do - something tangible we could ask for - but there really isn't at this time.  What we DO need from you is your continued positive thoughts, prayers and crossed fingers.  Please keep those coming.  :)

We probably won't have an update until around the 8th and I promise to write an update then.

Love,
Amy

Surgery has been postponed....

I wanted to give everyone an update on where things are with my treatment. 

We found out that in early January that the tumor is not "dead" like we thought, and it has grown significantly.  As many of you know, the pain is almost, if not more painful then when first diagnosed.  So they sent me for an MRI and CT Scan.  We went to see the Doctors today to figure out what to do next. 

Most importantly, the cancer hasn't spread other than the tumor growing.  There is a new small spot on my liver that was never there before, but it may not be anything - they will continue to monitor it.  The three small spots on my lungs have not grown and they will continue to monitor them, as well.  They gave me new meds for the pain (Fentanyl patches supplemented with Percocet) and advised me to start walking with a cane to take pressure off of the area.  The pain is from the bone right now, and as you know, bone pain is tremendous. 

Chemo started again on Wednesday, January 11.  They plan on a total of three (3) chemo cycles (1 every 2 weeks), just like the outpatient sessions I had before.  They are going to try every two weeks as long as my body can handle it (it's a pretty aggressive treatment).  The main goal right now is to prevent the tumor from growing and to prevent the cancer from metastasizing.  In 6 weeks, they'll do more scans and evaluate the next step.  It will be either radiation, surgery or possibly more chemo - we won’t know until then. Probably the hardest news is that surgery is going to be much, much harder than anticipated.  Unless the tumor shrinks, they are now going to have to take the entire left side of my pelvis, as well as the hip socket (they will use bone grafts and plates in place of those).  After surgery, I'll be monitored in ICU for several days, a week in the hospital, and 6 - 8 weeks of rehabilitation.  Also, the likelihood of chemo and/or radiation after recovery from surgery is good.

We definitely could have gotten worse news today, so we'll take this the best we can.  I’m not giving up.