Scott & Sunny

Scott & Sunny

Wednesday, February 28, 2007

Overtime loss

Scott says his sports curse continues. Seems every game we go to, the team he wants to win doesn't. Lightning lost in overtime 2-1. But the guys had fun. Oddly, it was Brad Richards that scored the only Lightning goal of the game.

Brad's mother stopped by the suite before the game. Then we also met his dad afterwards. Which is sort of odd, as I sat right next to them at Game 7 in 2004 when the Lightning won the Stanley Cup.

Afterwards, we got taken downstairs. While down there the boys got to meet Richards, Marty St. Louis, Vinny Lecavalier, Eric Perrin, Ryan Craig, Nick Tarnasky, Doug Janik, Cory Sarich, Paul Ranger, Filip Kuba, Marc Denis and Stephanie's favorite little Ukranian - Ruslan Fedotenko.

We have some pictures, but I can't upload them from here at work. I'll have to do it from home.

They also got themselves Richy's Rascals shirts, but the boys had the players all sign their jerseys. Everyone involved with the night was very nice, and just wanted to make sure the boys enjoyed their night. Two other families were in the suite as well. All the players were great with the kids, and now Derry realizes Marty St. Louis is no taller than him.

Tuesday, February 27, 2007

A special treat tonight

Scott (along with hangers-on myself, Stephanie and Derry) gets a nice treat tonight, courtesy of a special guy that just happens to be a hockey player for the Lightning.

We'll be going to the Lightning v. Dallas Stars game tonight and Scott will be deemed one of Richy's Rascals. "Richy" is Brad Richards whom plays for the Lightning. Basically, he purchases one of the luxury suites at the arena for the sole purpose of inviting children (and their hangers on) that have been stricken with cancer. Allowing them to attend a game in a controlled environment.

Here's an old article about why Richards does what he does.

The nice lady that coordinates his program is excited to have a child that is actually a true hockey fan coming. She asked Stephanie who was Scott's favorite player (which happens to not be Richards), and he may get an additional surprise visit. We'll see.

Stephanie was hesitant, so she contacted the hospital. They simply told her "absolutely he should go!".

I just don't know what else to say about such a person.

Monday, February 26, 2007

Out of gas

Had a quiet weekend. Mostly due to Scott being very, very short on energy. His appetite has disappeared, which the docs have said is normal after stopping the steroids, coupled with his treatment last week. The poor guy just has virtually no energy to do much of anything.

He is also getting very beyond "bored". It is very tough having him kept inside most of the day, and just going for a couple of quick walks around the block is exhausting for him. That's is very hard to see, as Scott has always been a bundle of energy. Chemotherapy is rough stuff. Really rough. He's in his first solid week with no clinic or hospital visits so far. Stephanie is contacting the doctor today to make sure he thinks it is still okay to wait for his scheduled bloodwork on Thursday.

Other than that, she's trying to keep him occupied during the days, and trying to get him as much rest and sleep as possible.

Thursday, February 22, 2007

Nothing out of whack

Scott's clinic visit today went well. When he arrived, the nurses thought he may need blood and/or platelets when they saw him. He was tired and looked washed out. But they drew his blood and found he actually needed nothing at all.

He still has a low ANC number, around 520, but other than that things are okay with his bloodwork.

He came home and slept most of the afternoon. They mentioned his body is working hard to fight, and is fighting very well. But it just takes its toll. He felt better and was in a much better mood after some sleep today.

He's dealing with those nasty little white sores you get in the mouth. Methotrexate causes them. They aren't too bad, but they did give him a script for some Lidocaine mouth rinse today. Hopefully that will help quite a bit.

He's cleared to wait until next Thursday for his next clinic visit, as long as he looks and feels fine until then. He has no chemo treatment other than the pill-form 6MP right now. The next IV chemo will be two weeks from today, when he's admitted to the hospital again for the Methotrexate.

He's doing great and is getting linked up to a lot of things via Melissa, the Ped Oncology social worker from the hospital. He's on the list now for a "Cancer Camp" someplace north of Orlando the last week of May. The folks there have Ped Oncologists and nurses on duty, and have the kids there for a week, and of course have all kids case information and medical contacts. He's also on the list for Richie's Rascals - this is a program that Brad Richards of the Lightning has, which is basically a suite he purchased at the arena giving all the tickets to cancer kids and their families for the night. Scott is quite excited about both of those propositions.

Stephanie is also got him listed with the American Cancer Society and the Leukemia and Lymphoma Society. Both provide college grants and scholarships to kids who have the misfortune of the disease. She was also informed the L&L Society will provide us with the first $500 each year for anything related to his treatement.

You never realize just how many "good" people are really around and trying to help these kids without being smack in the middle of the fight. There are a lot of them. And that is nice to know right now.

Monday, February 19, 2007

Back Home

Scott got back home this morning. His bloodwork came back fine. He's happy to be home, and had a better day on Sunday. He feels pretty good today.

Just on a daily dose of one drug - 6MP (6-Mercaptopurine) at the moment. That's the course for the next 11 days. He'll also be on the antibiotic on the weekends, as well as using a prescription mouthwash to help with some of the Methotrexate and 6MP side effects (basically those little white spots you get in your mouth).

I try to keep up with all the drugs he's given, but it isn't very easy. He's now been through Methotrexate, 6MP, Vincristine, Intrathecal (direct to spinal fluid) Vincristine, Allopurinol, Bactrim, Ativan, IV-pushed Benadryl, Doxorubicin and even a bit of Morphine the day his port was installed. That's just off the top of my head at the moment. It's no wonder he felt lousy this weekend.

Back to clinic on Thursday for a blood test. We're not sure if he'll have a spinal tap or bone marrow aspiration done then.

Saturday, February 17, 2007

A few pics

I've put a few pictures of Scott with "Benji", one of the dogs that "work" for the hospital.

Yes, you read that correct - dogs at the hospital.

"Benji" is actually the third dog Scott has had visit since his first stay 3 weeks ago. We only have printed pictures of the other two, as we didn't really have carrying a camera to a hospital high on the priority list. The dogs are highly trained, and pretty much hams for the camera. The first two that visited just put their front legs up beside Scott, then proceeded to pose. Benji insisted on getting all the way up on the bed and sitting down with Scott.

They only visit for a few minutes with each kid, but it does wonders for their spirits and mood.

Scott had a bit of a rough day today. He got a pounding headache and just wanted the room dark and to sleep. He was given some drugs to help with both. One of those days where it is just hard to watch him have to deal with. His high-dose chemo is the culprit. The nurses do say it is rough for most kids on the first treatment. At least he has not been vomiting. It seems likely to be at least Monday at this point before he'll be let loose to come home.

Plodding along

Well, Scott finished getting his massive dose of chemo early this morning. He's just on IV fluid at this point. He's very bored. Bloodwork this morning looked fine and they will start the antidote to the methotrexate this afternoon at 2:55 p.m. He's complaining about his eyes feeling odd, and having to squint to focus. Doctor doesn't seem too worried about that, but is going to have an eye doctor stop by and double-check Scott just for good measure.

I'll see if Steph will give me the camera today. There are some pictures of Scott on it that aren't here on the home PC just yet. I'll most likely get them and put them on our Photobucket site and put a link here to it.

Derry missed hockey practice this morning, as I didn't wake up until almost 10, and he is still asleep. Just as good, as he has an "assessment" skate tomorrow afternoon to see if he's placed on one of the spring league teams at the ice forum. He's doing well with all of this change. It has to be tough on him, as his down time here at the house has decreased drastically with all of our running about. Especially the days Scott has been in the hospital. He asks his questions a few at a time. He does know everything that is happening to Scott.

Stephanie has been quite tired during these hospital trips, as I can't get her to come home for a night and just let me stay there with Scott. Not that I would expect anything else, but she sleeps in bits and pieces (just like Scott does in there). At home she's chasing us all around with either hand sanitzer or bleach. It is a big change to be focused on germs as much as we must now.

People ask about how Stephanie and I are doing. We've found it is very hard to explain to anyone who hasn't been in the situation before. I now know I had no clue what is involved prior to 3 weeks ago. It is quite good therapy it seems to talk with the other parents of kids there at the hospital. We all say the same thing, about not being able to truly understand what goes through one's head until you been dealt the misfortune of having to face the issue head on.

It is a massive, instant lifechange. Not to sound cliche, but this disease does not discriminate. It does not care who you are, what financial, social or ethnic group you may be from. It effects people literally from all walks of life. One of the people at the hospital told us early on we'll find a "new normal". Nothing could be more true. It changes every aspect of how you look at the day and plan that day.

But it does do one thing very well - it forces you to build a realistic perspective scale which all things are measured against. The normal things we tend to worry about (like everyone in life), become massively less important. They are still there and attended to, but their true importance seems almost trivial in comparison. It almost embarrasses me to think how much some things bothered me before Scott got sick.

We all are doing well considering the situation. I'd be lying if I was to say it is "easy", but once in the situation you just deal with the situation. There are no options, other than to face everything full force and head on. The "shock" of finding out a child has cancer fades amazingly fast. Both Stephanie and I have commented about that to people. You realize in a matter of a day or two it is there and you must deal with it as necessary. And you realize using the word "leukemia" seems much easier than using the word "cancer".

All that said, no child deserves to be dealt such a hand.

But if you want to see some of the most amazing people you'll ever meet, just find the closest Pediatric Cancer center near you. Make a visit and just see how the kids themselves handle this disease.

You'll be shocked, and realize they just may be a lot tougher than all us grownups.

Friday, February 16, 2007


Dr. Tebbi "officially" informed us Scott is considered in "remission" today. He said "he's in a good remission". That is very positive being only 3 weeks into chemo.

Scott is has a massive 3 litre bag of Methotrexate hooked to his port. This will take roughly 24 hours to be pumped into him, and it was started about 3:00 a.m. this morning. Shortly after it is done, a antidote to the Methotrexate will be given to him. He will then be flushed with normal IV fluids until the level of Methotrexate is at 0.1 on the scale they use in the bloodwork. At that point, he'll be allowed back home. Dr. Tebbi expects that to take about 24 hours of flushing.

He is off Prednisolone for now. However he starts a pill-form chemo drug called 6MP today, which he will take for 14 consecutive days.

So it appears he should be release sometime during the day Sunday, as always it depends on bloodwork results and Scott having no fever.

He got a package yesterday from a wonderful place called HeavenlyHats.Com Click on the link and read about this charity, which is run by a kid in Green Bay, Wisconsin who is now only 16 or so. It is really amazing. Stephanie filled out the form on the site a bit earlier this week. A package showed up at home yesterday, with 4 hats, a bandana and a small teddy bear from the Build-A-Bear folks. Some of you will find it sort of funny that 2 of the hats were Florida Gator hats (UGG!!). He's sort of grown fond of a Penn State hat that was in the box.

More later, but all is going well.

Thursday, February 15, 2007

Made it to his room

Scott finally got in his room. There was a slight traffic jam/backup at Cancer Central it seems. But he's now in room 240. He's quite happy as he's found his favorite nurse will be on shift for the next 3 days. Plus he's gotten food.

Chemo is supposed to start around 5:00 p.m. here.

Another great round of bloodwork

A number of good things this morning. Dr. Wynn told Scott he wasn't doing a bone marrow aspiration today, due to last week's being negative. He is comfortable holding off on that procedure until next week. Scott has still been taken down to be put to sleep for his spinal tap and intrathecal chemo.

Bloodwork this morning is a great surprise. Again Scott needs no blood or platelets. His platelets count jumped to 362. His ANC number has went all the way up to 747. So his body is making platelets and "good" white blood cells (neutrophils). The doc is very please with this. Obviously that number will drop over the weekend due to the heavy doses of chemo he'll start today.

But very positive news all way round.

He's currently waiting on his procedure in the Day Hospital (Outpatient Procedures), after waking he'll move up to a room in the Pediatric Oncology Center (where he spent the first week), and he'll be back to being spoiled by the nurses again. We'll post the room number as soon as we know which one he'll be in for the weekend.

He's grumpy and mad right now because he's starving, but Scott is proving to be one tough, strong, amazing little guy.

Wednesday, February 14, 2007

The Waiting Game

Not much going on today. Scott still says he feels fine and is doing great. Just waiting for his procedures tomorrow. We'll be at the clinic about 8:00 tomorrow morning for bloodwork. If he needs blood or platelets, he'll get them prior to procedures. He'll be put to sleep right around 11:00 a.m. again tomorrow.

Afterwards, he'll be taken up to his hospital room for the weekend. He'll be there at least 72 hours from the time they start the one chemo via his port.

Scott is actually gaining a bit of weight, as he's eating non-stop. He swears he now has a "gut", which he has (for some reason) named "Joe". He's got shaved down hair now, as we did that Sunday evening, and he's now wearing an assortment of bandanas we've gotten and he's had given to him.

It is still quite amazing to see how he is handling all of this.

Monday, February 12, 2007

Today's Clinic trip

The clinic trip today went very well. Scott did not need blood or platelets. This is quite remarkable, as they had told us to expect him to be washed out and very pale by yesterday, as his platelet count would be dropping very low.

Quite the opposite was found this morning, as his platelet level has risen from around 50 last week to 220+ today. That means his body is somehow making its own platelets, which is very positive.

He still is seriously in danger of infection due to a very low ANC and white blood count, but that is really the only worry at this time.

Just have to wait for Thursday now. Lots of work and chemo coming, and it will be the first doses of two types of chemo.

Keepin' our fingers crossed.

Friday, February 9, 2007

Some very good news today

We just got some very good news. Dr. Wynn called Stephanie because the pathology report on his bone marrow sample taken yesterday had come back. The sample tested "negative" for any cancer cells at all. Dr. Wynn was very, very pleased with this and wanted us to know without waiting until our Monday visit. He stated it shows Scott's body is responding to the chemo treatment amazingly well, which is a terrific sign this early in the treatment.

Mind you none of this changes the issues regarding his immunity system, nor will it alter the planned course of treatment at all - it is just a very positive sign that the combination of drugs is working.

Just wanted to get this good news out there.

Thursday, February 8, 2007

Got him back home, and visit news.

Back home again. Scott was a bit grumpy after the procedure, but was due to the drugs and basically being so hungry. He's calmed down now at the house, and can rest over the weekend.

He has to have a blood test again Monday morning, and will likely need red blood cells and/or platelets.

Most everyone has asked Stephanie or myself "when can we visit Scott?". We know everyone just wants to see him and help keep his spirits raised. But the doctor told us today that he would strongly discourage any long-term visits (much more than 30 minutes - 1 hour) for the next 6 weeks - and absolutely no one with a cough, cold or that has been sick in the last couple of weeks. This is basically the period of time to get Scott through the heavy dosage period of the chemo, which just beats his immune system down drastically. The doctors stated after that period, his immune system will gradually begin to rebuild itself as normal, as the chemo dosages drop drastically when he reaches remission.

We know that likely seems like a long period of time as these events obviously make family eager to visit. However, it is what is best for his treatment at this time.

Stephanie, Scott, Derry and I certainly appreciate everyone's thoughts, wishes and offers. This is a long-term process, and all your support (and cookies) helps.

Brief update

Scott is in the clinic. Had bloodwork done and his ANC is down to 122. Not abnormal during the induction phase of treatment, as the docs say he can possibly get to a 0 ANC at some point. He's due for vincristine just before his procedure. Then he'll be put asleep for the spinal tap, intrathecal chemo and bone marrow aspiration. He's going for those at 11 a.m. (4 p.m. London time). Should be able to leave about an hour after those are done.

Wednesday, February 7, 2007

The Side Effect

That most notable side effect of chemo seems to have begun today. Upon arriving home, I was greeted by a grinning Scott saying "watch".

He then tugged on his head and handed me about 20 hairs effortlessly.

While expected, it was amazing to see him taking it in stride with humor this evening. He's basically lying little bits around all over the place.

At the same time, it is of course heart-breaking.

But a necessary bump in the road to get him well and back to normal life like a kid should have.

Off to the clinic tomorrow morning. Scott will likely go in for his bone marrow and spinal tap around 11:00 a.m. our time.

Tuesday, February 6, 2007

Scott stuck at clinic most of day

Scott and Stephanie are still at the clinic at this time (1:45 here, 6:45 London time). His blood test this morning showed he needed both a unit of blood (for his red cell and hemoglobin counts) as well as platelets. His platelet count had dropped from 59 to 10. His white blood cell count is down to 900, which results in his ANC number being 522 today.

All of this is expected, and not out of the ordinary. He just has to be careful (as always) about infections.

I left the hospital just after lunch time and came back to work, he will be done in the clinic about 3:00 today and headed home.

He's doing some knowledge testing with the Psych group at the hospital. This is part of a study group the conduct, which takes children right at the beginning of chemo treatment. They will give the tests at different times throughout the course of his treatment. All in an effort to determine how the whole process may or may not effect kids knowledge retainment.

Scott was a bit bummed that he didn't get to just go in for a blood test, wait for the result, then come home. But he does understand exactly why they need to test his blood so frequently, and add what is needed.

And to clarify - he is just in the outpatient clinic of the hospital, he is NOT admitted to the hospital. We'll post again later if anything else is of a concern today. Regardless, he will be back at the clinic Thursday morning for a lumbar puncture, bone marrow aspiration and his next dose of chemo drugs.

Monday, February 5, 2007

What's on deck

We've had a quiet weekend, which was quite welcome. No doctor's, clinics or new issues at all. Other than Scott eating like he's never eaten before. Prior to bed he is laying out his food plan for the following day. Anyone that really knows Scott realizes what a pleasant surprise this is to us. He seems upbeat most of the time, but does get a bit down and "bored" as he calls it while having to stay around and inside the house all day. It is a huge adjustment for him from that standpoint. Overall he is dealing with this in an amazing manner. He isn't fussy about his medication (he's never liked taking ANY kind of medicine, but understood when the doctors told him he must do as they say). He's keeping cleaner than ever as well. And most important, his attitude about dealing with ALL is great.

I've put a link to information about the "ANC number" at the top of the page, as well right here.

This number is very key throughout the course of treatment. Simplified, it is a barometer of the ability to fight infection, based on the percentage of white blood cells which are neutrophils. Any number below 1500 is considered "abnormal". 1000-1500 is considered "mild" risk, 500-1000 is considered "moderate" risk, and below 500 is considered "severe" risk.

Scott's ANC was 660 when he left the hospital last Wednesday. It was 1253 when we visited the clinic last Friday. He'll get a new reading tomorrow with his clinic visit, which is for a blood test only. As you can see, the number can change very drastically in a very short period of time.

Monitoring this number, and his bloodwork is of the highest importance. The largest risk in this whole issue is an infection of any type. That is the one thing that can cause complications along the way.

So we are off to the clinic again tomorrow morning, and will be again on Thursday.

Scott had a visit from one of the Hillsborough County School folks. On the doctors instructions, he will be held out of school at least for the remainder of this school year. Luckily Hillsborough County has a "Homebound/Hospital" program. The basics of this program can be seen at this link. Stephanie will become teacher by proxy during this time.

We'll update with the information from tomorrow's visit.

Friday, February 2, 2007

Back from today's clinic visit

Just got back in from Scott's first clinic visit. His bloodwork was pretty good all around. His ANC number jumped from 660 on Wednesday to 1253 today (anything over 1000 at this point is great news). He has hemoglobin level that is a bit low, which is expected. This is going to have us back for a clinic blood test on next Tuesday (2/6).

He did have a dose of vincristine this morning. He had no problem with them accessing his port, said he didn't even feel the needle stick. His attitude and mood are wonderful. Scott is handling all of this remarkably well.

The doctor have okayed him to stop taking the Allopurinol altogether. So he now is only taking the Bactrim on Friday, Saturday and Sundays. He will continue the steroids for another two weeks.

We only have to keep him in as germ-free an environment as possible. Anything that gives him a fever of 100.5 or higher means we are off for a hospital stay right away. So far, so good.

Now we're off to be couch potatoes for the afternoon and weekend.

Thursday, February 1, 2007

Finally a "normal" day

Or at least the most normal day we've had this week. Scott is feeling fine today. Taking his medications as he is supposed to do. He's very pleased to have slept in his own bed last night. His appetite is going better than it has in quite some time. Scott was never one to "ask" to eat, he just kind of ate because he had to eat. That's changed, and that's a good thing.

We all slept in for quite some time this morning, except for poor Derry, who I put on the school bus pre-dawn today. Scott and I sat around most of the day dodging all the bleach and cleaners Stephanie was spraying everywhere in an attempt to make the house germ-free.

Scott is due back at the clinic, which is attached to the hospital, tomorrow morning for his next round of treatment. If his blood work shows okay and the treatment goes normally, we should be done in just a few hours tomorrow. He is only due one drug tomorrow - vincristine. He had no problem with the first dose of it last week, other than the after effect of a sore jaw. The doctors say that is a very typical side-effect, and Scott said simple Tylenol took care of the pain. We'll see how things go tomorrow.

He is taking his steroids - prednisolone regularly now. That is what is driving his appetite higher than normal. He will remain on that med for 2 more weeks, the take it on a "ween" schedule for the week following.

Scott also has to take Allopurinol currently. This drug helps lower the uric acid in the body, a key factor that kept him in the hospital a couple days longer. Uric acid has to be removed, and Scott is doing a wonderful job of keeping well-hydrated at home. I think he's drank about 8 bottles of water today.

He is also taking bactrim, which is a combination of two general antibiotics. He only takes this drug on Friday, Saturday and Sunday. I'm not positive as to why, but I believe (and will ask tomorrow) that it is done for the 3 days following each treatment, which involves "accessing" his IV port. His "port" is the subcutaneous device he had put in last Friday, allowing all treatments to be done via this spot, without having to have in IV stuck in his arm every week. He even has numbing cream to apply about 45 minutes prior to getting to the clinic, so the needle stick used then is not even felt. All his nurses raved about the benefits of kids having these devices during the ordeal of chemotherapy. Scott's is in his right shoulder area, and he says it doesn't even bother him now.

More tomorrow.