The Lego arrived!!

Thank you very much to the Childhood Leukemia Foundation for granting Scotts wish, he is so chuffed. The CLF fund a gift of around $500 for each child diagnosed with leukemia in the USA and Scott picked various items from the Lego City range. Scott really was ecstatic when the postie arrived with his huge box of Lego, its timing couldnt have been better. Scott was starting to feel better after several weeks of being pretty darn sick and this gift really did make him forget all about the bad stuff and concentrate on the kind of things kids should be worrying about, such as cats sitting on helicopters and dads not building fast enough, that kind of thing.

This week

Not been updating this week. It's been very busy and hectic. I had jury duty on Monday and promptly got selected for a case, which just ended last night. Thankfully the judge and all parties involved worked around Scott's clinic visit yesterday. Not all legal folks are heartless it seems.

On the clinic visit - Scott had good counts and needed no infusions. However, he's been excessively tired this week but suffering from insomnia. Dead tired and can't sleep. He had horrible leg and back pain and was very simply miserable this week. He seemed a bit better last night and Stephanie and the boys may attempt a trip to the movies this afternoon with one of the neighbors. He's been scaled back to one pill per day with the drug he was taking due to shingles. However, when that bottle is done he'll switch to taking one Valtrex (yes, the drug with the disgusting commercials about herpes on tv) daily for the remainder of treatment. Doc Rossbach wants to due that as a preemptive measure against another bout of shingles. We thought Scott would be bummed further to have a daily pill added to his regimen forever, but he just said "just one a day? That's okay."

I guess everything is truly "relative" to him at this point.

Overall, things have been busy on all fronts here. Our company business in town is thriving (a good thing) which also causes heavy demands on all of us here locally. Thankfully we've gotten Brandon to return to work for us this coming Monday at a new property, and we're getting yet another of our Atlanta folks, Sarah, down here as his manager. Both will be great additions locally.

Derry continues with his skating class, but missed it last night due to a sore ankle that isn't working correctly. Likely a doctor's visit coming up for him soon. Hope it's just a sprain or aggravated joint from all the work he's been doing in class.

Hopefully a couple of not-so-eventful days this weekend. Since Stephanies mum got here, it seems everything has just been a blur. I think it has been about a month now that she got over, and everything since has been non-stop.

I don't believe that anybody feels
The way I do about you now


And all the roads we have to walk are winding
And all the lights that lead us there are blinding
There are many things that I would
Like to say to you
I don't know how


Because maybe
You're gonna be the one who saves me ?
And after all
You're my wonderwall

Six Months.

Tomorrow is July 24th. It was January 24th that all of our lives took a drastic, extremely sudden change. It was a Wednesday. A normally mild Wednesday in January which constitues "winter" here. Scott had come home from school and went out on his roller blades for a while. Then came dinner.

Then, not long at all afterward, Scott was in the restroom vomiting. His facial bruising and swollen lymphnodes behind the ears sent us off to the Urgent Care.

In roughly an hour from dinner, Stephanie and I faced the nightmare of a doctor explaining a Complete Blood Count to us, and the fact the results of Scott's strongly suggested leukemia.

I remember her saying "I suspect leukemia".

A massive blur insued. In a bit of irony, it started raining sometime between dinner and the time we heard the word "leukemia" for the first time. That seems odd, as it almost never rains here in January. I do remember Stephanie stating, as we were driving to St. Joseph's for our first time ever, "it seems to be taking a very long time David". I agreed. It seemed 100 miles away in the rain, at night, on streets I had traveled maybe once since moving here.

The next day, we were told Scott's bone marrow aspiration confirmed the diagnosis without doubt.

Scott had cancer. While a nightmare, it wasn't a dream. It was all too real. The proverbial storm had come aground.

By that Friday Scott had been put under twice. Had a bone marrow aspiration, spinal tap with intrathecal chemo, and his port installed. We had been given the "roadmap" - 108 weeks of treatment.

A 10-year-old told he'd be at that very hospital at least once weekly for over 2 years.

I remember trying to get one of my siblings on the phone that Thursday. It was tough, as my father was being put under that very day for an angioplasty. Their cell phones wouldn't work, as they were near cardiac care. I finally got my sister, who (as expected) started filling me in on my dad's progress, as that is what she was sure I was trying to get informed on. It was, but then I had to tell her we had been at the hospital all night as well - and why.

That weekend and first week was a total blur. The next 6 months haven't been too terribly different. One visit after the next. One hospital stay after another. Big Yellow Bags. Leg shots. Blood draws. Pills. Sickness.

It is easy to think that certain parts of Scott's treatment protocal have passed, and that by default makes things easier. While we are glad those things are passed, nothing approaches easy. Oddly, just this past weekend, Scott likley had the worst weekend to date at home. It seemed just as bad as one of the Big Yellow Bag stays, but just at home. Maybe that plays a factor. There is a cumulative effect of both the medicine and the mental aspects on Scott.

So here we find ourselves - 6 months down this road. The direction is on course, but the pavement seems no smoother. I can now drive to that hospital with my eyes closed.........but the rain is still coming down.

Feeling a bit "emo".

Well this weekend is proving to be a struggle emotionally and I’m trying so hard to be a big girl and not start bawling. Scott feels like death warmed up after heavy chemo on Thursday and is also starting to feel the radiation effects, he is exhausted and thoroughly hacked off. And through this weariness, somehow I have to get him to take 10 steroid pills, 4 doses of shingles pills, 2 bactrim (antibiotics) and a syringe full of chemo, all nicely spaced out, with food in his tummy, but the chemo has to be on an empty tummy, so that’s a wake up call in the middle of the night. Fun eh. Especially when you throw in Scotts finely honed gag reflex, oh it’s just a barrel of laughs. I wish he would fight with me, tell me to back off, tell me to take my drugs and shove it, but instead he is so very quiet, he takes his medication like the perfect little boy that he is, he tries so hard to hold it in but yet always the tears fall down his cheeks.

“Come! Come! Come – nuclear bomb!”
Morrissey

LOL.

Okay to go.

Scott was okayed to go ahead and start his next 3-week cycle. Kind of "good news/bad news". Good because we don't want delays, as delays can cause complications. Bad news because, well - he had doxorubicin, vincristine and his last rounds of leg shots today (HOORAY!!). But for 5 days he has 10 steroid pills per day. And still the 3200 mg of antibiotic everyday. Then Bactrim twice a day on FR-SA-SU. And 6mp each night.

It is likely going to be a bad weekend. He already feels horrible and has a sore stomach. But we have to try and get everything in him, somehow. Someway.

Derry had his second session with power skating tonight. He's exhausted and everything hurts. He's likely sweated more in the last 3 days than he has in a year. But it is good for him, and even though he says it isn't "fun", I think he will enjoy it all once his body is in tune.

Clinic Day

No updates this week, as things have been relatively quiet. Scott has only been on the antibiotics for shingles, and nothing else. This morning's visit will determine if he starts his 3-week cycle today or not. Up to blood counts and the doctor's opinion on that issue.

Today WILL be his last round of leg shots. He's had 19, and they went ahead with them last week, even with the shingles. So that mess should be done with today. I'll update today when we get the plan from the doctor's.

Derry started a hockey camp with Jonny Murray, and NHL referee, on Tuesday evening.

His whole body hurts.

And he's got another session again tonight.

Ahhhhh...the memories or burning muscles when football practice first started back up in the summer. :)

Freeeeeeeeedom!!!!!!

Free at last from the hospital! A nice surprise this morning - Dr. Wynn okayed Scott to be released and get home. We got him back to the house just an hour or so before Stephanie's mum had to be shuffled off to the airport. She's somewhere out over the Atlantic now. It was a real blessing for her to have been here this week. Our first "multi-night" unexpected hospital admission for Scott threw a big curveball into the entire week. At least she was able to change her flight 4 days later. We hate taking folks to the airport when they are leaving, especially when you have to say goodbye to them heading out to Concourse F. That always triggers flashbacks of the deportation nightmare. We hope she has an easier time getting back and does so without the delays she suffered coming over. Eric needs her back!

While Scott's counts weren't up to where they told us they had to be, they had bounced up pretty decently in the last 24 hours. Dr. Wynn just thought the situation was under control, and Scott would eat, drink and rest better at home. We do have orders to keep him well isolated. Also have to make a run to the clinic on Monday for a quick check of the affected area. We don't know yet if his next 3-week cycle due to start Thursday will happen or be delayed. He's on 3200 mg of antibiotic a day for the next 14, so it may be another week delay coming up.

Big thanks to Christine (Steph's mum) for this week. While it was horrible, it was tempered a bit with her playing taxi driver. Not much of a vacation for her coming all this way. She certainly got to see a LOT of things that go on with Scott. Including the radiation room and process, a pair of leg shots. Clinic visits, and of course - the torment of an unexpected stay in the hospital.

Tomorrow is hopefully a nice quiet day at the house to recover from such a week.

Back in solitary - woohoo!

Scotts nurse says I am no longer "funky" and can stay. So Im back with my baby in the room with the hex on the door. :) Awesome. However upon return I couldnt help but notice an identical hex on the door of our next door neighbour. We feel like lepers but at least we're not alone anymore.

Spookily enough Scott is coping surprisingly well. Usually after 5 days he's gone into a full scale meltdown but right now he is curled up with a monster bowl of Jello and is watching Smackdown, a great big grin on his face.

All is well.

Banned Again!

Meant to update here last evening. Stephanie had returned to the hospital on Wednesday at lunch time. She then awoke yesterday morning with pink-eye in her other eye, and was booted out again. Her mum got to spend yesterday here with Scott, while I could free myself after work.

Not too much to update about Scott. Docs are happy with the way his shingles are responding, and now it is just a matter of waiting until his counts reach a certain level for him to be released. Not sure on how long a delay this may be in his normal treatment cycle. He has to take the anti-viral drug for some time after being released, and the way I understand it is he can't have any of his other treatments until he stops taking that particular drug.

One thing that did not get delayed was his leg shots yesterday. He wasn't too happy, as I nor Stephanie was here, and they had to go ahead with them with his Nana being with him. He did fine though, and amazingly that was the 19th of the 20 sets of shots. The last pair of those will be done next Thursday at his clinic visit.

We're just waiting on doc this morning as well as his bloodwork. It would be wonderful if his counts came back at the magic number. Keeping our fingers crossed.

Rest? No one rests.

I'm sitting here wide awake. I should be laid out and snoozing away. But it doesn't come some nights. After a couple of nights in the room with Scott and the ever-present nurse/doctor/technician/cleaning lady interruptions, one would think lying down at home would make sleep come easy.

It doesn't. Being tired? Sure. Stephanie and I are both tired most of the time. The endless worry of the situation ensures that aspect. Sleep? We sleep, but most times it is the "interrupted, catnap" type sleep. If you stay out for 2 hours, it is a minor miracle. Most married couples jokingly enjoy the odd night "alone" in the bed usually housing husband and wife. No knees in the back. No snoring inches away. No partner talking in a dream.

But it doesn't work that way. My son is lying in a cancer ward. I go for periods of time when I can someway compute that in my head with understanding. Then I turn around and it is like a city bus slams you in the chest - you have a son in a cancer ward. While Scott isn't in for a complication of the disease, he is still in the hospital because he is a cancer patient. Anyone not a cancer patient would never be admitted with a shingles episode on an area about the size of a Post-It note.

I lay there in the room with him last night. Dozing occasionally. Sneaking a peek at him about every 10 minutes. Making sure the nurse or tech gave me the temp each time they do their best to enter quietly and check things. Wondering if Stephanie was home sleeping to help her eye, or if she is just like I am right now. Unable to find sleep. Exhausted, tired - yet finding sleep impossible.

I miss my kid. He has to be locked away to prevent something somewhat "normal" from becoming a very serious threat to him. The times when he is "inpatient" are tough. He should be huddled away about 20 feet from me now, not 20 miles away from me in the cancer ward. I miss him. Derry misses him. I miss my wife, who suffers even more than I. One of us must be there, and one here.

Not much "message" or "point" in this entry, just a few thoughts on how, even coming up on 6 months since diagnosis, the phrase runs through your head - my son has cancer - and it still seems very "new".

I'd give anything in the world to swap places with him.

One banned, contagious person off the list.

One of the banned, diseased people are off the list. Stephanie is cleared to return to the hospital. She got back today about lunch time. I've never seen someone so happy to be able to BE in a hospital in my life. She's now there with Scott - who is still quite restricted to room 236. Can't roam the floor or go outside.

He did spike up to a 101 temp last night, the highest since he was diagnosed. An attempt at liquid Tylenol resulted in a nice spewing episode. Another antibiotic was added to his IV drip, and some bacterial blood cultures were taken - all standard protocal for the kids on chemo regimens. Blood culture results should be back sometime tomorrow.

One thing is checked off the list for good - Scott finished up his radiation today! He "graduated" from the radiation clinic. Got some ballons signed by the staff and got his trophy mask for a keepsake. The radiation oncologist, as well as the treatment staff, said Scott handled that aspect of the treatment exceptionally well. A very good group of folks work in that clinic, and they are very aware of how much "time" is involved once the kid is locked down with his mask. You do not get in their way, as they move as a team very quickly. Great personalities as well, especially for folks basically dealing with one cancer patient after another. Trust me when I say the people giving the treatment are a huge factor in this ordeal. I couldn't envision a lot of grumpy attitudes around Scott while being treated. It would be horrible, and likely land me in jail at some point.

So Stephanie and Scott are holed up tonight. Most likely another 3 nights or so in the clink for this visit. Have to make sure the issue is properly addressed and cleared up before release.

A Bored, Unhappy little man

Scott is doing fine. He has no itching and his shingles are causing no pain. Nothing is spreading, and the affected area looks to be on the healing/drying out path. That was all good news from Dr. Tebbi this morning.

Then I had to pipe up and ask how many days he expected to keep him in here. The answer was five to seven to monitor Scott's condition, keep him on IV Zovirax and ensure nothing spreads and the issue is dealth with.

Both Scott and I sat somewhat surprised and in shock. Luckily he didn't start crying, but his mood changed instantly. After a bit of talking and reassurance about why he had to stay, he seems much better.

So we are stuck here for most of the week it seems. Stephanie is stuck at home using eyedrops to deal with her pink-eye. That will be the deal until she gets the okay and is allowed back on the ward here. It just shows how what would normally be a "stay home and take medicine" issue becomes close to a week-long hospital stay for Scott.

Boredom will be the big fight he has this week.

Derry's Birthday - UPDATED

Yup. Today Derry is 13. A Teen!!!! Watch the video in Stephanie's post below. It is what happened to him just after midnight.

Poor kid. He has a knack for bad things on his birthday. 3 years ago, he was stuck on a train for 15 hours - after being deported.

Then today came. Scott was scheduled for a simple radiation visit. Run to clinic, be in there a few minutes and back home.

Did'nt happen.

He had a spot on his bum. Small red area. We saw it last night and decided to have one of his docs look at it this morning.

He has shingles. Same virus as chickenpox. But it is not spreading.

So he's been checked in to room 236, and is isolated. He's okay and in good spirits, although he doesn't want to be here. After a bit of pizza and Monday Night Raw, he's starting to settle down. Hopefully for an uneventful night here at the hospital.

And on top of that, Stephanie wakes up with pink-eye. She's been to clinic here at hospital, and has now been told to get home for 24 hours to treat her eye with drops. She's hearbroken that she can't be here with Scott, but she understands the risk that would cause to not only Scott, but the other kids up here in the ward. It's a part of this experience we hoped we'd never face - one of us HAVING to be away from Scott while in the hospital. Likely a mother's worst nightmare.

The way things happen makes one wonder. I made it back to work for about 4 hours, then got the shingle news. Got Stephanie to go down to the clinic here shortly afterward and got her news. Why not a week ago? Strange. One can't pin down when something with this disease is going to reach up and grab you. It is a minor bump in the road, but makes you realize every little thing effecting Scott has to be dealt with at the highest level of concern.

Stephanie's mum has rebooked her flight for Saturday, so she gets an extra 4 days across the pond. A blessing for us to help deal with this unforeseen issue.

I'll update here again in the morning after the doctor stops by.

We had Derry's "envelope session" here in the room this evening. He loaded up pretty well, and is planning on how to do his spending. Tons of thanks to everyone for taking care of our Derry. He's been brilliant through this ordeal, just taking things in stride. Boy will he have some stories about interesting birthdays in the future for his kids.

Happy Birthday to Derry

My beautiful Highlander is 13!

http://www.youtube.com/watch?v=dDL1l8h-okk

A full day out

Saturday we finally had a full day out. The first time we've had such since Scott's diagnosis. We were worried about his energy level holding up, but he did great. He just got hot a couple of times, and we were able to get him inside and chill out for several minutes.

First we were off to Downtown Disney for lunch at the Rainforest Cafe. The boys like going there when they have the chance, and Stephanie's mum didn't get to go last time she came over. Afterwards, a bit of time was needed to let our over-stuffed guts settle. So we ended up with a rental deck boat for an hour to cruise back through the river system connected to Dowtown Disney, Old Key West and Port Orleans. The boys and I had done that once before, and it was a nice quiet hour away from all the noise that is typically Disney.

Then we were off to Universal Studios to catch the Blue Man Group show that is now housed at Universal's CityWalk. Stephanie, her mum, Scott or Derry had never seen one of their shows. I don't think they had any idea what to expect. If you seen one of the shows, you know it can't really be explained in words to well. I just told them it is funny, and they'll all certainly enjoy it. Our biggest concern came after the hike from parking to the Blue Man theater. Scott was really hot and sweaty. A slight plea to one of the staff, Bryan, and he got us inside the theater doors pronto. That was a good thing, as it was about 30 degrees cooler in there. Bryan then took us right to our seats, taking very good care of us. Several minutes later another staff member came up to me and told us to follow her (I'm horrible with names, and can't remember her's) after the show, as they'd set up a private visit with one of the Blue Men afterwards for us. Both because of Scott's situation and Monday being Derry's birthday. This all came about from the conversation we had with Bryan before being seated. We never asked for anything, and they just thought it was a good thing to do.

The show was wonderful and everyone loved it. Scott continually yelling at me to join him in all the "How to be a Rockstar" movements (if you've seen the show, you know what I mean). He was doing every single thing they asked, and had a blast. We all did. If you've never seen a Blue Man show, you have to take one in.

The instant the house lights came up, the girl that spoke to me before the show (wished I could remember that name), magically appeared next to me and just said "you guys come with me". Off we trekked to a room right beside where they let us in before the show. In just couple of minutes, all three Blue Men walked in the other side of the room. For the record - no, they don't talked there either. Yes, they act exactly as on stage - which is as if a human is some type of foreign little fascination. I've put a few pictures up on the picture page.

After that, we were out the door and in search of fries. CityWalk at 8 on Saturday night isn't exactly the most "family-friendly" atmosphere, so Scott slyly suggested a return visit to Dowtown Disney, as there is a chipper there. So back we trekked to get chips at the chipper. Finally home about 11:30 last night.

A nice full day out. Great for Scott. Great for Derry just before his birthday. And great just to have a day close to normal as possible.

"His head has changed a bit"

That's the comment from the radiation team this morning. Nothing to worry about, and actualy just the "fat face" effect from the steroids. A couple of quick x-rays confirmed that Scott's skull was positioned correctly. 6 of 9 radiation visits are completed now. Scott has done wonderfully with the procedures. He's so set on the "don't move" instructions that the only sign you get from him on the cameras during the process is a thumbs-up when one of the techs tells him what's going on. He's a trooper with all that is going on.

Haven't done too much this week. Stephanie's mum, Scott and I went over to the mall for the fireworks on the 4th. Stephanie and Derry stayed at the house. Stephanie's a bit under the weather, and Derry just says "the mall is boring". He'll be 13 on Monday, so I guess he's already working on full-blown teen mode.

I did get out and get a round of golf in late yesterday afternoon. A nice "sweat box" golf round as I like to call them. Playing golf is something that can't really be planned these days, so one take's the last-minute opportunities that arise. Plus it is dirt cheap this time of year in the afternoon. Most folks have become too soft to deal with the heat and be soaking wet for 3 hours in the sun. It actually feels good to be honest.

We have a doctor's appointment for Stephanie today. She has a sore throat, and I told her she'd better call, as we're to take no chances with getting really sick. Scott says he's going and going in the room with a video camera, just on the chance that she may get a shot. If she does, he says he's filming it. Repayment for some hospital pictures she took I believe.

Scott's legs are much better today, winding down the leg/foot/jaw pain effects of vincristine. That's a good thing, as we have a full afternoon planned tomorrow. I can't mention what on here, as it is a surprise that only Stephanie and I know about. It should be a good day. Scott's counts were as high as they've been since January, with an ANC at a whooping 2800+. It's the best situation we've have to attempt a full day away for some fun. We're crossing our fingers.

He was also visited by a dream coordinator for the Children's Dream Fund. We're supposed to work on picking a week to go to Give Kids The World and get back with them sometime next week. Scott also got "Kemo" Bear. A teddy bear with a hospital gown, a port and hair that comes out. LOL. It's a great bear. We're likely shooting for sometime in mid to late October for our visit.

And a great big, massively huge THANK YOU to Lisa and Alex. A package showed up yesterday with a "cool" Webkinz polar bear. Scott has promptly named the bear "Andy Pipkin". It's a long story, but Andy is a character in a Brit TV series. Lisa also included a pizza gift card of an extremely generous value. That was a double-whammy big smile from Scott, and the timing was perfect with him being at the peak of steroid-mad eating. And I have to KEEP thanking Lisa, as she's made a very generous donation to my Golf Marathon effort for yet another kid. I've not seen Lisa personally in several years, and Stephanie and the boys have never met her or Alex, but they are family - in every sense of the word. Lisa and Alex - you guys are great.

Finally a shout-out to Jim Heath - the infamous Spider. I've not emailed the Guru Golf crew about the Golf Marathon, but Spider is obviously watching and keeping tabs here. He's given a very generous donation to that effort as well. Thanks Spider, wished I could get out and hack up some turf with you guys more often.

WHACK!

That's the sound I heard last night while out by the pool. Seems Stephanie's mum walked smack dab into the sliding door - and it was closed. I guess they are too clean to see! She took a nice wallop to the bridge of her nose (Don't worry Eric, she's fine - but I would be worried about the 3 hours her and Stephanie spent at the mall yesterday). She's faired well and doesn't even have black eyes today.

She came along with Scott and I for today's rad treatment. 4 of them done now. Scott is seeming quite tired most of the day. We did get out this afternoon to the movies (thanks to the Tucker's foundation) and saw "Evan Almighty". Afterwards we were required by Steroid Boy to visit the Carvel shop right next door. He had it all planned, pulling me aside right as we got out of our seats.

Back home and everyone except Scott and I took off for a brief shopping trip again. Scott and I just sat around here like couch potatoes and listened to the nice thunderstorm and monsoon-like rain wave that came through. A nice calm evening except for the loads of fireworks being shot of by everyone. Tomorrow night should be light a warzone of sorts.

Folks from all around are responding to my Golf Marathon request, and in very generous ways. Again, it is very much appreciated.

A happy and safe 4th of July to everyone.

Duke Nukem 3

Scott and I rode over for the third radiation treatment this morning. Somewhat uneventful (thankfully). Scott handled the rad treatment with ease, and gave the usual "thumbs-up" on camera when the machine went to move from the right side to left. He's already very fatigued, yet still starving thanks to the steroids. He's not very talkative at the moment, but he is now off with Stephanie and her mum at the mall. He did tell me he kept having dreams last night that Stephanie or myself were waking him up to give him medicine. Poor kid.

Also have to take a second to give a large THANKS out to a couple named Sherry and Dirk Tucker. They are a very devout couple that started a local foundation called Giving Hope Through Faith. Sadly they started this foundation after their son Zachary lost his battle with cancer last year. Zach was just 9. We have those nightmares. The Tucker's have the uneviable experience of that reality. The purpose of their foundation is to help families take care of the everyday needs that still are present, and most times increase, when cancer enters your world. It is simple, once a month they send out packages to children's families that have cancer. This month was the first month we received such, and boy do the Tucker's know what folks really need in these times. Simple gift cards for Target, Publix and the movies. Our sincere appreciation to this wonderful family.