MRI results and Today's Procedures

We received the results from the MRI and they were mixed.  There was no cancer in his spine, so that was excellent news, but there appears to be some new growth in the original tumor site, so that’s not as good of news.  Since it’s in the same area, it’s not as if the cancer has spread, but it obviously would have been better if it wasn’t there.  The Oncologist, Neurosurgeon, and physicians from St. Jude’s are going to review the films together and come up with a consensus as to the best treatment plan moving forward.  There is a line in the sand of 1.5 square centimeters or below of tumor that’s considered average risk and from what I understand, they measured either 1.7 or 1.8, so it’s not a huge difference, but they have to have the breakpoint somewhere to determine the Radiation amount to give.  We should hear something definitive over the weekend or Monday at the latest.

 

Update:  LeAnn just spoke to the Neurosurgeon and he doesn’t think it’s tumor at all that showed up in the scan, so we’ll get some final word soon.  From what he said, the Oncologist feels the same, but they want to talk to St. Jude’s since it’s their protocol that Cam will get.

 

He had the Apheresis Catheter put in today which will be used to pull blood out, filter out the stem cells, and then replace the blood.  It’s a tube that’s put into his chest that will stay through the Radiation treatments.  The good thing is it is used for all the labs, blood draws, IV meds, etc, so it keeps him from getting stuck all the time.  The bad thing..it’s a tube stuck in his chest, so it’s not the most comfortable thing to have.  As usual, he came through like the trooper he is and is taking a nap on the couch after stuffing his face yet again.

 

They also did a Lumbar Puncture to test the cerebralspinal fluid (CSF) for the cancer cells, so if it comes up clean, the MRI didn’t show anything in the spine, and then they come to an agreement the “stuff” in the scan isn’t tumor, then that’s the Triple Crown of good news.  He’ll still get the same overall treatment…just the Radiation dosage won’t be as high and the long term prognosis is much better.  The Oncologist is pushing to get the CSF tested today to see how it looks, so if we get news, I’ll update.

 

Overall a good day considering…

 

Connor’s 10^th birthday is tomorrow (March 1), so pray he can have a happy birthday and forget about all this for a few hours and have some fun.

Monday, February 25th Appointments

Cam had his stitches removed today and saw the Oncologist as well as the Neurosurgeons.  Everything is still going very well and the recovery process is going extremely well.  We’re pretty much released from the Neuro guys and have been handed off to Oncology, so Stage 1 is pretty much complete and Cam has done wonderfully through it.  We have the follow up MRI on Wednesday to see for sure if there is anything in the spine and then the line placement for the stem cell transfer (and other “stuff”) as well as Lumbar Puncture on Friday.  He’ll be sedated for both of those, which is good and bad, so it won’t be as tough on him once they have him in that state.

 

We had been worried about Cam not using his left arm, but over the weekend, he decided it was time to start moving it again.  I was putting a shirt on him Saturday morning and he just popped it up like it was no big deal.  I almost went through the roof and started yelling for LeAnn and Connor to come see what he was doing…seems silly, but it really made the day.  He’s still got a way to go to have full control all the way out to his fingers, but you can ask him to move it here or there and to lift it up and he can do it now.

 

We’ll be starting Radiation at the latest on the week of March 10 as March 12 is the latest date the treatment protocol calls for to start.  There are some possible long term effects from the Radiation and Chemo which are pretty troublesome, but there’s no way to really tell what the outcome of those will be until later, so we have to accept those long reach risks to get him better now.  Not an easy thing to take in and process, but unfortunately it’s a necessary evil.

 

We’ll update again after the MRI on Wednesday.  It won’t change the treatment itself whatever results we see, but it definitely increases the long-term prognosis if we come up clear, so we’ll definitely be praying for clear.  Thanks again to everyone for the love, prayers, and support of all kinds.  All of the different types of support which has been given has meant the world to us.  In a completely positive way, we’ve been overwhelmed by it all.  We’ll never be able to say “Thank you” enough for what you’ve done for Cam and for our family.

 

Next post as soon as we get the MRI results.

We're home!!

It was a pretty tough trip for little man with all the bumps in the road bouncing his neck around, but we made it home.  He couldn’t have been any happier to be on the couch watching the Heels with Mom, Connor, and Grandmother.  He had his first bath in almost two weeks and loved every second of that as well.  He slept well and woke up hungry this morning.  His steps are getting more and more sure each time and he’s actually started moving his left hand and arm, so that’s excellent progress as well.

 

Things will be quiet for a bit until next week.  He’s got a follow up MRI to check some “things” they saw on his spine in the MRI after surgery, but they feel pretty confident it was just blood products which had settled after surgery.  He’s having a line put in for the collection of stem cells as well as for meds, blood products, whatever during radiation.  The stem cells will be kept and stored until his chemo treatments start and will then be transferred back after each chemo treatment to help speed up the recovery process between treatments.

 

Connor is acting goofy and Cam is giggling at him this morning, so it’s close to being “normal” in the house…it sounds wonderful.  Soon they will be fussing and fighting again like normal brothers and then I KNOW it will be back to what is was before.

Going Home Today

Just wanted to let everyone know we should be coming come today. The Neuro guys have released him, but pretty much under the condition we stay aggressive with his PT/OT as he's still. We've got to run him through a test for the Oncologist some time this afternoon, but as soon as he's done with it, we can head out.

We've got a couple weeks with a lot to do and then the radiation treatments start. The actual treatments themself will only take a few minutes, so that's good, but it's M-F for six weeks. He'll take three to five weeks off, then start his Chemo once a month for four months.

Just wanted to pass this along with a thanks to everyone for the prayers which have helped Cam get past hurdle one. A little more time for rehab, then on to hurdle two in the Radiation.

Cameron's initial entry and latest status

Thanks Andrew for a simple way to keep everyone posted!

 

It's been a blur over the past week, but Cam has made very good progress and is ready to go home as soon as his PT helps him get a bit stronger.  The Neurosurgeon came by this morning and said medically, he was fine to go home, but they wanted him to be a bit stronger before they release him to go home.  He also said he knew getting him home would further help in the recovery process, but that he still needed to be at a certain level before they would feel comfortable releasing him.  So...we'll be getting him out of bed as much as possible to strengthen his legs to the point he can support himself and get around without assistance.

 

We've been worried about his left arm for a few days now.  There doesn't appear to be anything wrong from either the physical or Neuro side, but for some reason he doesn't like to try to use it.  They've done a CT to make sure there wasn't anything strange from the Neuro side and an X-ray on his shoulder to make sure there wasn't anything going on there and both came up negative.  He can get aggravated at us enough to squeeze his hand pretty hard on our fingers, but he won't flex his arm up or hold it up.  The Neuro doc did an interesting test where he picked his arm up over his head and just dropped it.  The instinctive reflex is to not let it hit your head (seems like a pretty risky test for someone who just had their head cracked open, but what do I know) and Cam would always pull it to the side before it would hit his head.  So it seems it's a mental, but not a Neuro thing at this point.  We'll have to work on that pretty hard in PT to get it going.

 

They've given us an idea of the treatment process and while the actual individual treatments themselves won't take that long, they are stretched out for a while.  He'll have six weeks of radiation followed by four chemo treatments spaced a month apart making the total treatment time around six months.  The radiation will be split in two where the first three weeks they will hit his entire head and his spine as the cells can travel in the brain/spinal fluid, but the second three weeks, they will focus on specific areas.  There are some possible short term and long term side effects from the radiation treatments, so prayers for Cam's protection during these would definitely be appreciated.  Everyone has been very optimistic about the effectiveness of the treatments and the long term prognosis for Cameron, so we are truly blessed.

 

Words cannot express the gratitude LeAnn and I have for everyone who have given their support to our family during this time.  The prayers and gifts for Cameron and our family have been so numerous, we have no doubt God is in the middle of this situation and has worked everything out according to His perfect will.  There are so many things we've seen through this week that absolutely cannot be explained away as chance that we know God is with Cam and our family.  The perfect timing of the Urgent Care doctor being there and having that little voice in his head telling him to do a CT just to make sure, the doctors here at Duke who have shown their personal side and have expressed their feelings about Cam through the entire week, the nursing staff who has loved him like their own and even an on call Neuro guy we met the other night who came from a town a few miles from LeAnn's hometown and who's father is a Southern Baptist Minister just like Le's father.

 

PT just knocked on the door, so I'm out.  Another update will come soon.

 

EJ