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