Getting close to half way

All in all, a great week for Cam.  His left arm and hand is getting more sure each day and he's started walking on his own, which is thrilling and nerve racking at the same time.  He's SO proud of himself, but he's still not 100% stable all the time, so LeAnn and I worry he's going to get out of our sight and topple over.  He wants to be independent and we're very thankful for that, but at the same time, we want to make sure he's not banging his head off the floor.

 

Cam had his last treatment for his spine today and will start treatment on Monday focused on the area the tumor was located.  They're going to have to do a full series of X-rays again like last time to get everything set up correctly, so it could be a long session for Cam.  While we're really happy he's done with the spine treatments as his stomach has stayed a bit queasy from them (we think), we're not excited about the long day on Monday or the change of rooms and technicians for Cam's remaining treatments.  I think overall he's realized there's nothing painful happening during the treatments, so he's not necessarily scared of them any more, but his comfort level was growing each day the way things were.  He was in such a good routine with the room/tech's he had, the treatments were zipping by each day, so please pray for peace and comfort for Cam on Monday to get through the setup as well as become comfortable with the new tech's as quickly as possible.

 

We'll update again soon, but assume no news is GREAT news.

 

Happy Easter...22 and counting!

This is LeAnn posting the updates today. Eight treatments down and twenty-two to go! It’s hard to believe we are almost a third of the way through Cameron’s radiation treatments. This week went pretty well. Monday through Wednesday, Cameron was his typical vibrant self; giggling most of the day and staying up late. However, on Thursday, his energy level plummeted and he got a little nauseated. I was a little depressed about his sickness thinking this was a sign of what the remainder of his treatments would be like but surprisingly enough, Friday he perked back up and had a great day. We met with the radio-oncologist on Friday and he told us it was typical for patient’s energy levels to rise and fall so suddenly during treatments.

The weather here was beautiful on Saturday and Cameron enjoyed getting outside and back to the things he loves and misses the most; his big-wheel and his bicycle. Here are a few pictures to enjoy of him playing outside.

The most exciting thing about this weekend was that the four of us were able to return to church for Easter Sunday. Here is a picture of myself and the boys in our new Easter clothes.

As I sat in the sanctuary, watching Cameron smile and clap to the music, his brain surgery six weeks ago today seemed like a distant memory. How Great is our God! So on this Resurrection Sunday, I’m sure of two things. One, our Lord is alive, and two, which is evident by the smile on Cameron’s face, is our Lord is still very much in the business of performing miracles.

Tomorrow will be the 1/6th mark!

We’re counting down…as of tomorrow (3/19), we’ll have five treatments down and twenty-five to go.  Cameron has really adjusted well to the treatments and only fusses a little as they get the mask on.  Since it’s such a tight fit, they have to adjust his face around to get it to fit right, so it can be a bit uncomfortable until they get it adjusted correctly.  The treatments are down to around ten minutes from start to finish, so now that he’s not getting poked and prodded each day, his spirits have really come back.  His eyes are back to being those full of life, bright, blue windows and his smile has come back.  As soon as we take the mask off each day, he has the biggest grin on his face and the first words that come out are “That wasn’t so bad!”…so his personality is definitely on the way back.  He hasn’t had any sickness from the treatments and today was the first day he hasn’t taken a nap and he’s still going strong as I type this at 8:35pm, so maybe his strength is coming back as well.  His steps are more and more sure each day and his left arm is gaining more strength and coordination as well.  The fine motor skills are still a bit off, but he’s reaching and grabbing things more confidently each day.

 

He had an appointment at the clinic today for blood work, so that meant he had to be stuck to draw the blood since the Apheresis catheter had been removed.  He did well and since it only took about thirty seconds to get through the entire process, he really didn’t have time to get too worked up.  At this point, trading the catheter for this once a week is a pretty good deal.  Hopefully he can continue to handle the treatments well and these blood draws will be the only thing we’ll have to do regularly.

 

At this point, no news is GREAT news, so I’ll post again in a few days.

Two down...twenty eight to go

Cam’s treatment went VERY well today. From beginning to end, calling us out of the waiting room to walking out the door to leave, it took around fifteen minutes and they actually said the next treatment would be even shorter. Cam still isn’t liking the mask being put on, but he’s adjusting quicker each day, so hopefully if the next few appointments can go as well or even better as today, I feel he’ll be in the swing of things soon.

We were all outside this afternoon enjoying the day and Cam piped up saying he wanted to ride his tricycle, so LeAnn put him on it and away he went! He was able to pedal and turn on his own, but he tired quickly. However, as you can see from the pictures, he loved every second of it. He was SO proud of himself and was just beaming his silly smile from ear to ear. Here are a couple pics from the fun.

Tomorrow is the last treatment for the week, so he’ll have the weekend off to relax and recoup from the week’s events. I can already see somewhat of a change in his appetite and his energy level, so it seems to be hitting those aspects already. Still no sickness, so praise God for that. We’ll just pray that trend continues and he can become adjusted to the appetite/energy issues quickly as he really doesn’t have any weight he can afford to lose.

PRAISE GOD!!!!

Cam made it through his first Radiation treatment this morning with no huge complications, so that’s great news…one down…twenty-nine to go.  The treatments will get shorter from here and he’s tolerated them better from Saturday, to yesterday, to today, so Cam should get into the swing of things pretty quickly.

 

And for the great news…the results came back from the latest Lumbar Puncture and IT’S ALL CLEAR!  This means he’s classified as average risk, which in turns means a lower Radiation dose (and lower side effects on his cognitive abilities) and a better overall long term prognosis.

 

GOD IS SO GOOD!

We're line free

They took the Apheresis catheter out and did the Lumbar Puncture this morning without any issues...except it was done on "Duke time" instead of when he was supposed to go. After he got back to the room, he was having some pain with the IV in his wrist, so they went ahead and removed that as well, so he's line free as of this afternoon. It will be a couple days before we get the LP results back, so now the waiting game begins for the news to get back. There are some potential scary things about not having easy access with the Apheresis catheter like having to put IVs in if necessary for meds, blood products, etc., but the KNOWN good things like full baths, sleeping however he wants to, not having nightly line flushes and weekly dressing changes, would seem to far outweigh those possibilities, so we'll pray the good wins out.

We start Radiation treatments in the morning, so they wanted him to not have anything to eat after midnight tonight until his appointment tomorrow...at 11:15am...which is complete insanity. I "politely" asked why and made sure the doctor who ordered it knew he was no longer on IV fluids as there was no way he'd have a positive first experience without having eaten since dinner the night before. They mercifully changed it to 5am instead, so I guess I'll wake him up at 4am to shove something into him to tide him over through the treatment time. Please pray for peace for Cameron both in his stomach as well as his mind to not be so frightened and become accustomed to the procedures as quickly as possible. The first few days will take a little longer, but if we can show him there are no real "ouchies" involved, I think he'll adjust well. He's just so scared of getting poked, prodded, dressings and/or tape removed, etc. that any touch is cause for panic. Hopefully we're over those humps now and the next few weeks can be simpler for him.

Thanks again to everyone and especially the folks at Salem Baptist for the prayer service last night dedicated to Cameron. There are prayers for Cam being given across the US as well as around the world for this little boy, so there is no doubt God is in the middle of this and has His hand controlling it all. There are so many things which have happened through this entire process which cannot be explained to luck, chance, karma, or whatever else the world wants to call it. Only God could have lined things up so perfectly and allowed Cam to make an impact on the the lives of the people he's come across and in return the people THEY come in contact with. LeAnn gave the Neurosurgeons a Chris Tomlin CD and a note telling them how much Cam loved his music along with our thanks for their work with Cam. They personally told us and even sent a letter home saying they had played the CD during a day of their surgery in honor of "Action" Jackson, so he's a missionary even at this early age....more than his old man has ever been or ever could ever be at HIS age. ;-)

There is no way LeAnn and I will ever be able to repay what all has been done for our family, so please accept this humble attempt as a heartfelt start. We'll update again with the news from the LP.

Always seems to be mixed results, but the good news is REALLY good

We have great news on the Apheresis!  They retested a small sample for just the stem cells and the viability was at 99%, so we’re DONE with that.  There was the concern before with the 80% viability number, but that was for the entire sample and from what the doc’s say, the stem cells themselves are much more hearty than other white blood cells, so we’re more than good to go on that part of the pretreatment process.

 

Other great news is Cam is becoming stronger and more sure in his walking and using his left arm and hand.  He is actually sitting up and taking a few steps on his own and is raising himself to standing with the help of the couch, so God has definitely blessed him and us with this progress in such a short time.  If we do help him walk, it’s only a light hold on his hands to help him keep his balance.  It’s so cool to watch his face when he does these things…you can see how proud he is of himself and that silly little grin he has shines through.

 

On the not as great news, Cam spiked a fever through the early hours of Thursday night/Friday morning, so we took him into the clinic at Duke on Friday.  They went ahead admitted him and he’s been there over the weekend to get antibiotics into him.  Everyone thought it was going to be some sort of infection from the Apheresis catheter which might let us have it removed, much to Mommy’s liking, but multiple cultures from it have come back negative, so we’re not exactly sure what the source of the fever is.  I don’t think they’ll remove the catheter unless they can definitively prove that’s the source of the problem, so we’re still in limbo there.  He spiked the fever again last night, so odds are we won’t be going home until Monday at the earliest.  He’s not necessarily in any pain, but he’s just bored sitting in the hospital.  He tested positive for MRSA, which means they have him on isolation orders and he can’t leave his room, so we’re kinda stuck in the room 24 hours a day.  From what they’ve told us, this is somewhat common as many people are walking around with this and would never know it...but it’s definitely no fun for him.

 

We had an appointment scheduled for Friday which he missed where he had to get all the radiation pretreatment setup done, so we did it yesterday instead.  He had to sit with his mask on for a couple hours while they got all the areas lined up and marked off on his body to show exactly where the treatments will take place.  Par for the course, he made it through another grueling session and was back to being a happy little guy as soon as it was done talking about riding the train back to the main hospital.  He definitely had his moments during the course of “photo op”, but he toughed it out like the champ he is.  This was pretty much the last thing he needed to do to be ready for the treatments to start this Wednesday the 12^th.  LeAnn being the master negotiator she is, swung a deal to change his treatment timeslot from late afternoon to 11:15am to give us the ability to get Connor to school on time and still not have to rush to the appointment and then be home in plenty of time to get Connor off the bus in the afternoon.  Needless to say, this will allow us to get back to some normalcy in our daily routine, so praise God for that as well!  We’re praying he won’t have any sickness from the treatments and he can get into the swing of things over the next six weeks.

 

The Lumbar Puncture is coming up on Tuesday, so if we can get an all clear on it this time, it means a lower radiation dose which in turn means lower chances of long term issues.  Needless to say, any and all prayers for this as well would definitely be appreciated.

 

I’ll post again as soon as we have updates.

Latest status

Well…more mixed results from the MRI and Lumbar Puncture. The Neuro and Oncology teams came to an agreement that the MRI was not showing cancer, so basically the spine itself and the brain have no signs of tumor at this point which is absolutely excellent. However, there was a “tiny clump” of cells in the cerebrospinal fluid (CSF) which shouldn’t have been there, so they are repeating the Lumbar Puncture on Tuesday as the Oncologist is not comfortable putting the additional radiation in Cam because of a “tiny clump”…his exact explanation of what he saw. More or less, a true positive would show a large number of cells and leave no doubt while a true negative would show none, so the Oncologist isn’t sure what this reading is, therefore the second test to try to get a better understanding before making the final radiation level determinations. We spoke to the Neurosurgeon tonight and he actually told us another patient had the same thing right around the same time as Cam’s test, so he wasn’t sure what was going on either.

Cam had to have a mask and headrest created to hold his head still and in the exact position required during the Radiation treatments yesterday. Here’s a picture of what the mask looks like…less the mouth hole as Cam’s is a solid mask.

http://corporatesatan.com/radioactive080204/pages/128_2819.htm

They drape a piece of wet, warm to hot plastic over his face, lock it down to the table, and wait for it to cool and harden to the shape of his face. They didn’t get it quite right the first two times, but third time was the charm…after about an hour and a half…fun, fun, fun.

Cam made it through the Apheresis today, but it was a grueling, all day ordeal. We arrived around 8:30am, Cam had blood drawn from the aphresis catheter without any issues, and then went straight back to the room with the machine. They got him started and all went well…for around 45 minutes. The machine then stopped pulling blood because of a clot in the line. They pulled out quite the nasty looking glob and then started it back up…for another two or three minutes…and then it all went to pot. There was a HUGE clot far up in the catheter which they had to work on for a couple HOURS to free up. He seems to be a child of many firsts at Duke…I’ll share them in a second. Finally, after much crying from Cam and Mommy and the nurses working on the clot, they were able to clear it out and finish the procedure…at around 4:30pm. One nasty side effect of the procedure is it causes Calcium to be bound to the anticoagulant, so his hands and feet were tingling and his right hand pretty much locked up like he had arthritis. The way around it is to add Calcium in a drip into the line, so we had to wait for that to finish and for the Doc’s to look at him as he had pretty bad tremors in his eyes/hands. We finally finished that around 5:30pm and had to wait until 6:30pm for the readings from the procedure to see if we needed to give Cam another round of the meds to bump up his white counts as everyone expected us to have to repeat the process again tomorrow. Well…Cam finally caught a break and actually had MORE than enough on one shot, but the viability of the cells were only at 80%, probably due to the long delay, so if any additional cells were to be lost in the interim, that would put him at risk of not having enough at the end game. So they repeated the viability test which pushed us until 8pm and then triple checking with the Director of the Lab to make sure we’re good to go with the one collection which pushed us to 8:30pm…twelve hours for a child who gets tired after our “normal” morning appointments. Needless to say, he was absolutely miserable and exhausted by this point and went straight to sleep as soon as his head hit the pillow.

As to the many firsts Cam has experienced at Duke that I can remember at this hour:

• They messed up his meds on the bone scan and the Oncologist said that’s the first time in the eight years he’s been at Duke that has happened.
• His clot today would allow them to pull blood into the syringe, but would not allow them to push back into the line. Normally the clot prevents pulling back into the syringe which makes sense as the clot is inside and won’t let the blood get outside, but Mr. Cam was fortunate enough to start with the odd one and then have it turn into the normal one thirty minutes later. It had everyone baffled.
• The Transplant doctor said he’s never seen a viability report come back as Cam’s did in the seventeen or eighteen years he’s done this.

PRAISE GOD Cam gets a full day off tomorrow, only has a quick hour or so appointment on Friday, and a completely free weekend. The Lumbar Puncture is on Tuesday the 11^th and his Radiation treatments will start on Wednesday the 12^th, so we’re about to start into the next phase of the process.

I honestly don’t mean to paint such a horrible picture, but the prayers we truly need at this point is for peace and comfort for Cameron. He has been through pure Hell (excuse the wording, but nothing else even comes close) over the past week with all these tests and procedures and his spirits are beginning to waiver. He has always been such a happy, outgoing child, but he is expectedly somber and quiet each day as we head to the hospital and we’re beginning to worry this is getting the best of him. Also pray LeAnn and I can find the words to somehow explain the what’s and why’s so he can understand, but not be scared to death of what’s in front of him over the coming months. The outlook the doctors are giving is definitely upbeat, but the steps to get Cameron to that are pretty tough on him. I know I’ve said it before…even though he’s my child, I’ve never seen such a brave little boy…but he’s quickly losing heart. Please pray he can recover emotionally from the past week and have strength for the coming months.

We’ll update again after the results are back from the Lumbar Puncture. Thanks again to everyone for the love and support that’s been shown during this…it means the world to Cameron and to us.