Delay

We've experienced Scott's first treatment delay at clinic this morning. Scott's counts haven't bounced back enough. His ANC is only back up to 540, and has to be a minimum 750 for him to receive Vincristine, Doxorubicin and start the round of steroids and 6mp. So, what is truly treatment week 19 is now pushed back to next week, and every treatment from here forward pushes back one week. This includes radiation, which was scheduled to start 6/21, but will not start now until 6/28. That stretches the 108 weeks to 109.

However, his leg shots are not count-dependent. He got the next round of them this morning. That makes 13 he's gotten. 7 more to go. I'm going to try to talk him into letting me film those once, just to post up and make folks realize what happens. I don't know if he'll go along with that, or if Stephanie will either.

More later after I get home and we sort through things. I need to make sure all this is accurate.

Through the weekend

We're through the low-count weekend with no large issues. Scott managed to stay mostly entertained at home. He did have a visit from Katherine from his school, but that was about all he could handle. Or more accurately, all we were willing to chance from an exposure angle.

We did make a trade-in visit to Gamestop. This led to a decent size credit on their gaming card, so a few new games helped entertain while he couldn't get out much. Derry is affected at these times as well. He is hesitant to go out with the neighborhood kids when Scott can't. Sometimes it is easy to not see the whole effect this has on him. He's done brilliantly with Scott through this so far. They have the normal brotherly verbal jousts from time to time, but mostly have gotten on very well.

Scott's out of the house time this weekend consisted of the gamestop trip and a ride to the movie store and to get some food today. The highlight of the ride being a ride-through car wash, which he got a bang out of. It is the small things that seem to keep his spirits up.

We've notice it seems his hair is growing, but very thinly. I don't know if it is actually coming back, or just my imagination. Maybe we can will it back asap.

Today was day 1 of the wonderful "3 days with no drugs" that only comes at the tail-end of each 3-week cycle. Scott cherishes those three days. Can't blame him for that at all. Now comes the heavy clinic week, and the beginning of the next pulse of steroids. Also the next dose of Vincristine which will ultimatley bring the several days of aches in his joints. This Thursday will begin week 19. We're now 124 days into Scott's protocal.

That seems like a long time, but we're all still in shock mode most of the time. A number of folks told us at the outset we'd find a "new normal". I don't think any of this should be normal for any of us. It affects all of us in many ways. Just have to keep pushing along and taking care of keeping on track, and do everything possible to not let it get the best of us.

Off to check Scott and see if he's asleep. He insists one of us stay awake until he's out for the night, which is hard sometimes. He has trouble getting comfortable and to sleep a lot of nights. How he knows we stayed up unti he went to sleep is beyond me, but until he does, he calls for one of us then says "see you in a few minutes". It's actually nice when I think about it. He has a sense of humor about lots of things, which is a very good thing. Scott has always been upbeat, comical and talkative. He is still that way, other than the group of days the drugs make him miserable.

12 down now

Clinic visit yesterday saw Scott get the 12th of 20 legs shots. He does rather well with the shots now, which is a double-edged sword. Fine that they aren't as traumatic as the beginning, but exactly why in the world should simultaneous 2-inch needles into a 10-year-old's legs NOT be grossly traumatic?

Perspective on everything blurs more as the days pass. The words "good/bad" or "positive/negative" are not as simple to define as before Scott was diagnosed. It's a struggle no one should endure. Not the child. Not the parents. Not the families.

Coming into the weekend, the boys were hoping to visit the movie theater sometime to catch one of the new summer movies. A sub-200 ANC from yesterday's blood work has cancelled such a trip. No way can Scott sit in a jammed theatre for 2+ hours just awaiting an influx of germs from someone. So it will be a quiet weekend at the house. He is supposed to have a visit from Katherine, one of his school mates today. She said she's missed Scott since he's been out of school. Hopefully they'll have a good time and cheer him up. He's had a headache for 2 days now, but no fever. Anytime a pain or sneeze or anything comes up, you just shudder with worry.

Scott saw JJ yesterday at the clinic. We discovered her journey to NYC for her operation was delayed. She's now due up late next week, with her operation being early the following week. Scott and JJ played around in the clinic most of the morning. Stephanie said both seemed in good spirits. We have some pictures, including Scott holding a 2-week-old that makes him look like a grossly-underaged new dad. Just have to get them online tonight or over the weekend.

Off for a (hopefully) nice, quiet 3-day weekend.

Update on the last week

Quite a lot has went on since a week ago. Early last week, Scott was having a very bad time with sore joints. Sore jaw. Sore legs. Sore feet. It all is related to the Vincristine he gets every 3rd week, which has a delayed effect. It is hard to believe he was bouncing around playing on the Wii the weekend of his shopping spree, then pretty much just lying around for several days.

He was doing well enough to go the the school spring show on Wednesday, which was somewhat of a talent show. We didn't realize until we got there the kids dedicated the show to Scott. He had a good time watching some of his friends up on the stage. Several of his pals stopped by to speak to him a few minutes. Brandon has been making his regular visits by the house, and that really makes Scott happy. Brandon should get a big, huge thank you as well. It seems he was out washing cars and doing odd things for folks in the neighborhood last weekend - just so he could give Scott the money. What a great kid! He came by this evening to spend some time with Scott in the pool.

Then Thursday's clinic visit came. Nothing but blood work and leg shots on that visit. His bloodwork was in good shape, much better than 1 week after the nasty big yellow bags. So that is a good thing to see going forward. Also he's past the halfway mark with the leg shots. That was week 11 of 20. No reactions yet, which we are grateful for, as you hear some bad things about reactions kids have to those shots.

Then came Saturday. I was dreading Saturday. Stephanie was dreading Saturday. Scott couldn't wait until Saturday. All this because we had a skating session scheduled for Scott with Coach Cindy. I must say, I was sort of hoping Scott's feet would still be sore enough to make him delay the session a week. Not because we don't want him having fun, but just out of sheer fear of him going on the ice. So he got suited up in all his hockey gear and off we went. He gets down at the ice edge and stepped on quite cautiously........then just took off across the ice. Cindy was saying he seemed to remember everything, and did remarkably well considering he hasn't put his skates on for 4 months. Of course he hasn't much stamina and strength, but he did great and didn't crash and scare us to death. We believe it did him a great deal of good just to get out there.

It probably did us a great deal of good just to see him out there as well. So, we continue on for now. Taking things day by day. We also are thinking of little JJ and her mom Mary, who flew up to NYC this weekend for admission to Sloan-Kettering Cancer Center for a very critical operation to remove a tumor in her chest. Everyone is hoping for a great success for JJ.

Shopping Spree completed

Well, we finally made it over to the Brandon Toys-R-Us Saturday about noon. We had decided to not worry with going prior to the store opening, although we do appreciate that generous offer by Barry, the Manager. When we got to the store, it was overrun with Star Wars characters. Seems they were having a Star Wars event from Noon-3:00. That all turned out very well, as Scott was met by Barry and given two Stormtroopers as shopping guards for his time in the store. Barry also had an additional surprise for Scott, as he had a big Toys-R-Us shopping bag with a couple of Wii games and Star Wars stuff packed in it - an additional gift to Scott from the store. So Scott was well ahead of plan before even shopping.

Scott was able to take his time, aided by his personal guards and Barry. Matthew, Sonny and Sarah also get a big thank you from us for all of their help. A great group of people working in that store. They in fact had a Wii stashed away in the back and held for Scott, and Scott instantly set off shopping for games with for the system. We were in the store for around 90 minutes, never rushed by anyone at anytime. Barry even offered the store breakroom up for Scott to have a rest if necessary, as Scott was getting a bit tired after a while. He filled his buggy and did a good job of making his $500 target, as his gift card now had 3 bucks and some change left on it.

We also want to give another BIG thank you to Mr. Wallace, the counselor at Mintz Elementary. Without Mr. Wallace, none of this would have happened. He is a very nice man, and actually has us considering placing Scott back in Mintz this fall to go through 5th grade again. It may be a better transition back into school. It would be a great comfort knowing someone like Mr. Wallace is there.

Scott's friend Brandon from school has also been by several times over the last couple of weeks. Brandon's visits have lifted Scott's spirits, and Brandon came by with a brand new Bucs cap today for Scott! Thanks a bunch to Brandon!

On top of all of that, we had another box of cookies show up on the front step! Can't ever complain about mysteriously appearing cookies. Cookies are good. Mmmm good.

We've put 23 more pictures up on the picture page. Some from the hospital, some from here and some from the visit to Toys-R-Us.

Scott actually had me take off to Border's later in the day. Seems he had some cash left on his gift card from there. He actually went and used it to buy Stephanie a Mother's Day gift - a "Little Britain" dvd season package (those across the pond will know what that is). Through all this, he's still got as big a heart as ever.

Chemo in a cluster

Scott had good bloodwork yesterday. But that was about all that was good for his clinic visit. He was in a real wreck of a mood. Very nervous all morning. Got sick right when he took his first ever Orapred ODT after having blood drawn. Not a good sign. Then on with the IV Vincristine, Doxorubicin and leg shots. Just and endless stream of stuff being shoved into his port.

After the legs shots, he seem to cheer up a bit and start making jokes. It was a very long day for him, as he had to cram all of that in, then get two more loads of steroids and a dose of 6mp before bed. A whopping load of poison all in the name of treatment. It is staggering. You think you get used to what is going to happen, or maybe settle on the fact it is "routine", but it just does not work that way at all. Luckily he's in a much better mood today. And the Orapred ODT seems to have been accepted by him, as long as he lets them melt away under his tongue, safely away from tastebuds.

On top of all that, he had IV antibiotics pushed in so he could make his dentist visit just after the clinic.

I hate to think of the total amount of chemo his body will take during this course. If you do think about it, you're mind will become mush. But he's hanging in there.

It seems, dependent on his feeling and mood tomorrow, we will be making his visit to Toys R Us in the morning. Stephanie has spoke with the manager, and he's somehow convinced one of his managers to get a Wii in the store and marked for Scott. Hope that doesn't cause a riot amongst folks in search of one.

Also, being Mother's Day weekend, we must bring attention to the Thanks Mom Marrow Drive, which is organized by the National Marrow Donor Program. If you feel you can committ to being on the list, please do so. One never knows when they may be the perfect match for someone's chance at survival. Stephanie actually solicited Michelle Malkin to tout the drive on her web-log, which gets several million hits per month. Michelle generously did, it was posted by her about 9 this morning. Stephanie even got a reply email from Michelle telling her she'd be glad to, and quoted Stephanie on the entry. We have a star!

The National Registry needs as many folks listed as possible. Folks are diagnosed endlessly, and many require bone marrow transplants. The day Scott was diagnosed, we thought it was bizarre that 3 kids came in the same night as new cancer patients at St. Joe's. This week seems to have been a very sad one. St. Joe's has had 17 brand new cases just this week. That's staggering and very depressing.

Tomorrow also marks a milestone for Stephanie - it will be the 6 month mark since she quit smoking. That is a wonderful feat, especially considering she was only about 8 weeks in when Scott got sick. We're all very proud of her, and we've told her she can gladly start smoking again when Scott approves of it.

And of course Sunday is Mother's Day here in the States. With all of this going on, it makes one think about where we may be without moms. It makes me think of the things my mom has done through the years of grief I gave her. It makes me think of Steph's mom, and how she became a savior in our infamous "deportation fiasco" of 2004. As well as Steph's grandmother, who is a wonderful woman that helped Stephanie mentally through that time in a major way. And Stephanie's Auntie 'Mo - a mom herself - who helped Stephanie, Scott and Derry during that time just as if they were her own. All were literally shelters in a storm. Makes me think of my "little sister" - who is actually my niece, who just became a mom last month. And also makes me think of the mom's going through sheer hell with sick children at the hospital. Especially Mary, who is about to go to NYC with little JJ for a very critical operation.

No mom should have to see a child through this struggle, but far too many do.

Driving for Donors

Please take a couple of minutes to go to this site and read about Pat. Pat is a kid being treated at St. Joe's as well. He's an amazing little kid. He and his mom are about to take off on a long road trip in an RV, rounding up marrow donors for the National Marrow Registry.

Listing as a donor does require a committment. If you are found to be a match, time is of the essence with the transplant process, which is some children's only hope of survival.

Those of you over 61, sorry, you're too old!!

So consider the hope you may give some person you don't even know. It could be their only shot.

We're off to Border's and Blockbuster now. Mr. Wallace came by again on Friday, with some gift cards to those places that were donated from parents at the school.

Clinic Day

Stephanie and Scott are at the clinic this morning. He's had his bloodwork, and needs no transfusions. His ANC is quite low - 347 - which isn't surprising considering he's only 14 days past the last Hi-dose being administered. Hopefully his body bounces back over the next week, and especially when the next round of steroids begins in one week. This will be the first time he's had the high level of steroids without the hi-dose chemo. It will be interesting to see how things progress, as this will be the routine of treatment for the remainder of his scheduled protocol.

Stephanie also researched and found an ODT (Orally Disintegrating Tablet) for of Scott's steroid. The docs have discussed it, as they hadn't reviewed it to date (it was just FDA approved last year). They've okayed it for use in his treatment to replace the normal tablets and liquid form. The clinic nurses are checking to make sure the insurance covers that form. Hopefully they do, that will handle a big worry we have going into next week.

Dr. Wynn has visited with him this morning, and okayed swimming at home, as long as the pool chemicals are at proper levels. He also okayed a bit of ice skating (which honestly scares the living hell out of me). We'll have to see about that one. Have to try to find some very "non-crowded" ice time for sure. No way will we toss him out there during the normal "public" skates. There are a couple of instructors that do one-on-one for reasonable rates. That may be the best approach. The biggest worry is Scott's all-out skating approach, as he never cared if he fell or crashed into boards before. Hopefully there's a bit of fear about that in him at this point.

Still not been on the Toys-R-Us visit just yet. Probably will do that on a weekend morning. Scott desires a Nintendo Wii. They are still hard to come by down here, but the store manager is searching. Mr. Wallace returned again yesterday to the house, bringing Scott some cards made by schoolmates that do the Morning Show at his school, as well as the Student Council -which Scott had just been named to a week or so prior to his diagnosis.

And if you have a spare birthday card lying around, drop one to this kid named Shane. Two years into his treatment for ALL, Shane relapsed and had to start over at Page 1. Now all he wants is to try and get as many birthdays cards as possible. I think the 350 MILLION is a typo on the page, I think it is supposed to be 350,000. Regardless, any card added to his mailbox will hopefully make a bright spot in his day. He certainly needs it.