Trying to get a routine.

Since coming home from the hospital, we've been trying to work on a routine. Something resembling a normal schedule. Scott has been feeling okay for the most part. He got sick once this weekend while trying to get some of his meds down. However, he is bored silly and aggravated when Derry gets to do things outside the house that he can't do.

Scott seems to have a bit of the sniffles right now, but has no fever. Having to keep a close watch on him (as always). From now until week 22, he is only scheduled for weekly clinic visits. Hopefully we can adhere to that schedule. While he is done with the highest dosage chemo, the other stuff is no walk in the park. The treatment can only be described as brutal to the body. There is nothing nice about it, or no parts of it that can truly be called "easy". "Easier than other parts", yes. But that is only a relative term.

Scott did have a surprise visit from Mr. Wallace at his school on Friday. Mr. Wallace is the school counselor at Scott's elementary school. He came around to visit and had a bag for Scott. Upon digging in the bag Scott pulled out a gift card from Toys-R-Us worth $500. Mr. Wallace had also been in contact with the store manager near our house. Scott has to contact the manager today and set up a day to visit the store either 1 hour before opening, or an hour after closing for his little spending spree. So Scott gets to have the store to himself to shop. We have no idea how that gift was funded, or who funded it, but it is a very generous offer on someone's part. It is also very generous of the store manager to accomodate Scott in that manner.

Hopefully this week will be a good week for him.

Scott is back home.

We did get Scott back home yesterday afternoon. But he is a very, very tired little guy. All three of his steroid doses were pushed in prior to him leaving yesterday, which finishes up this cycle. He's not very well right now, as he's fighting the effects of everything, as well as fatigue. He is just fed up with most all aspects of this "treatment" now. He's up to a total of 31 restless, aggravating nights in the hospital. Stephanie is also fighting the same ordeal. She didn't manage much sleep at all during this stay, even without it being as long as the last, it really took a toll on both of them. It takes its toll on us all continually.

I was staring at a calendar this morning, and realized today marks 90 days since that evening when Scott got sick after dinner. Sadly, none of us will ever forget January 24. In some ways, it seems like years since that day. Then, at other times, it seems 3 months have just blurred together in an endless stream of tests, worries, hospital stays, clinic visits and nausea for Scott. He's hardly had anything that could be considered a "break" from being loaded up with some sort of medicine. 90 days, 31 in the hospital.

Our hope now is to keep him out of there with any complications. The doctors did tell us only a small number of kids dealing with this protocol actually have all 4 of their high-dose treatments on schedule, which is what Scott has managed. We have to keep diligent with cleaning hands and surfaces around the house. Derry, Steph and I have to keep clear of him at the slightest hint that we may be catching a bug, as any bug runs the risk of having an unplanned hospital stay. I have one now, and it is scary thinking a bug which just makes me feel bad can send him to the hospital.

Scott doesn't want to spend anymore nights in that place. No one can blame him at all. It all adds up to a massive amount of stress for him - an amount of stress no 10-year-old should carry. It robs him of simply being a "kid".

Just a couple of days downtime, then back to clinic Thursday for bloodwork and leg shots (8 of 20).

Hoping for release today

Scott has cleared his poison level based on his latest bloodwork. He was receiving a unit of blood this morning, as his hemaglobin dropped a tiny amount as well. We're hoping he gets released around 2:00 today, but they are keeping a close eye on his blood pressure as it elevates when he gets blood.

If we do get him home, I'll have to be hidden away. Seems I got some type of bug that is setting my throat afire. Simple got to do everything we can to keep Scott from picking it up and landing right back in hospital.

We're just wanting to get him out of this stay, recover from this round of nasty mess and move forward with the weekly visits and much lighter dosages of chemo.

Long night

Scott had a long night last night. Had to have a potassium infusion over 2 hours, which required his blood pressure to be checked every 10 minutes. So, not much sleep. He's borderline on needing blood today based on his hemaglobin level. Doc will check with latest round of bloodwork and make that call.

He's complaining about his jaw hurting, as it has done each time he's had Vincristine. But he's refusing to take Tylenol to help with that aspect.

Both he and Stephanie are obviously tired.

More later.

Yellow be cursed!

Sometime just after midnight a nurse walked into Scott's room and removed the last Big Yellow Bag from Scott's iv pole and infusion pump. The last 3-litre bag of poison he is scheduled to have has been pumped into him, and now comes the last cycle of "clearing" the high-dose Methatrexate. Hopefully it doesn't take as long as the last two rounds, but even if it DOES take that long, it will be a point in his treatment we'll relish seeing pass. Hopefully after recovering from this round, he won't be beaten down so harshly with the rest of treatment. Not that any of the treatment is a cakewalk or easy by any means, but this stuff is bad.

Scott is in a decent mood this morning. He's flushed with red, splotchy cheeks (which is the norm during this cycle), but is eating quite a bit and has agreed to complete a required number of laps around the floor to persuade me to bring the Xbox to the hospital later this afternoon. It makes one feel bad to bargain with a kid pumped full of poison in this manner, but we just want him to clear as fast as possible and be home. Maybe he's got a bit of a psychological boost knowing the last of those bags are now in the biohazard trash can. Or he truly understands the other drugs (which will continue for the entire treatment course) just don't beat him down as much.

He has also now become a craver of fries from Checker's. I'm not sure if it is because he actually likes them, or because the place is directly across from the hospital, and the fries come back still too hot to eat at times. Either way, if it takes 10 orders to satisfy him per day, we'd rather see him eat a lot of anything than hardly nothing at all.

And for all the folks across the pond, the clan has grown by another number. My niece had a baby girl on Thursday. They named her Carolyn Isabella, which comes from both of the baby's GRANDmothers (had to capitalize that, as one's sister only becomes a Granny for the first time once). I don't know what that makes Carolyn Isabella to me, I guess she's my niece's daughter. Someone help me out here with the proper term.

Derry and I off to hospital soon. Scott is in room 232 this round. So if anyone calls the main hospital number, ask for that room.

Feel good, get beat down.

Treatment for this disease is brutal. Don't let anyone kid you about that.

For the last week (up through admission yesterday) Scott felt as good as he's felt since diagnosis. He as eating and had some energy. Yesterday morning after the bloodwork came back, we had to kill some time as there were no open rooms ready. We came by my office and went to the mall to get some lunch and stroll around. Everything is fine.

Then we get a call that his room is ready and head back off to hospital.

All went fine until about 7, when Scott was getting sick due to all the chemo pushed into his port, and steroid pills which he was gagging on. Then a two hour delay for the doc to write the order for IV steroids. He got sick 3 times in a very little time. Then got IV steroids and Ativan which thankfully knocked him out.

From great to crap in a matter of hours. Nothing nice about it. No fun at all.

Checked In.

Scott is checked in now and already connected to fluids.

He's in room 232 now.
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Getting admitted.

We're at clinic this morning and just got word back that Scott's ANC is 814, so he gets admitted for his last bag of methatrexate, the high dose. He's in a better mood than normal, mainly because he doesn't get put to sleep today for any procedures. That means he was allowed food and drink today, so that helps.

Dr. Rossbach here now, and has said he's doing well, as only a small number of kids on this treatment protocol bounce back well enough to have all 4 doses of this mess on schedule.

As soon as doc leaves, we should get him loaded into his room for this stay.
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No transfusions needed.

Scott made the clinic this morning and needed no blood or platelets transfusion. His hemaglobin was up significantly since Friday. His ANC has crept up to 425. He must reach the 750 threshold in order to be admitted on Thursday for the last nasty round of HD Methatrexate. Crossing our fingers on that one.

We did manage to get him a recumbent stationary bike. He's limited severely from being outside, but needed to get more active in some manner. One of the clinic nurses thought that would be a good idea, as it doesn't impact his back, but gets his heart rate elevated and gets him moving. Hopefully that will help him reach the 750 his needs to have the last nightmare session in the hospital. Scott also likes the bike, because it's actually got a couple of simple electronic games he can play while pedaling. What will they think of next?

Clinic Results

Scott made his clinic visit yesterday. He received his Elspar legs shots. His ANC has bottomed out (hopefully) at a whopping 91. Also had a low hemaglobin count, which results in us having to return to clinic Monday morning instead of holding off until next Thursday for his scheduled admission.

This is being done in order to check his blood again, and give him an necessary blood or platelets to help spike his ANC back up to the 750 minimum. If he's not at 750, the HD Methotrexate cannot be given, and he will not be admitted on next Thursday. On his last admission, he was in the low 100's and bounced back before admission morning, so we're hoping that happens over the next week. He certainly doesn't mind the Big Yellow Bag being delayed, but we just want to get through this last round on the high dosage cycles and on to a "regular" schedule.

Not that anything related to all of this is regular or normal.

Been quiet on here for a few days.

Not due to nothing happening, but I've not posted here for several days. Mainly because I felt it would be old posting:

Scott ate, then got sick. Then took medicine and got sick again. Then ate, felt bad for a couple hours and got sick again.

Since he got home last Thursday, yesterday was the only day he made it through without vomiting. The HD Methotrexate seems to have a lag effect in this manner, and it seems worse each round. Maybe due to the cumulative effect of each round. We don't know. He's not spiked a fever to this point, so at least there is no infection or bug causing his constant nausea.

He has a clinic visit tomorrow, which will include leg shots. He told me last night "those don't really bother me anymore". It will also include his normal rounds of IV-push chemo drugs. Hopefully no problems with any of that and he can have a somewhat decent week before his admission next Thursday (4/19) for the last miserable Big Yellow Bag.

We still can't get him out too much, but we did make a round of mini-golf the other day. He was fine through that, but was exhausted when we got home. About a 90-minute outing exhausted him. That's how beaten down he is from an energy aspect. He and I got out for a decent walk last night after the rain stopped. He did well with it, until we found some baby ducks stuck in a storm drain. Which made him say "we have to get them out". So we came back home, loaded up a bucket and tools, and scooped them out. Luckily the parent ducks (which seemed to be hanging around the storm drain earlier) flew back in the lake and gathered up the baby ducks, who swam right off behind them as if nothing had happened.

Wished someone could come scoop him out of his ordeal and it simply be gone. Sadly, the ducks ordeal had an easy remedy. All he is going through, and he just wanted to make sure the ducks weren't just doomed and stuck there.

Home.

Everyone home now after 7 more nights in the hospital. Scott is streched out on his bed, commenting how comfy it is. He was a bit worried about taking his 6mp tonight, as we had it in new liquid form, from a compounding pharmacy here in Brandon (who is luckily covered by our insurance). After he took it, he said it had little taste to it, and he settled down greatly. Finally relaxed for the first time in about 10 days.

Today marked the beginning of week 11 of his treatment, or day 71. A total of 27 nights in the clink so far. One nasty big yellow bag left 2 weeks from now. He's gotten through 5 of 20 rounds of Elspar shots in his legs. I was just looking through the complete treatment protocol, and things become "weekly" if we can get through this next scheduled hospital stay.

Stephanie has just collapsed into our bed. Hopefully she gets a full night sleep. She spends every moment at the hospital (and won't have it any other way). The nurses actually tell her it is like having an extra hand, as she does many of the things they tend to do for most kids. I don't know how some people leave their kids there alone, but it happens more than I care to think.

So we've made it 10 weeks into this nightmare. We've learned a lot, yet have a lot more to learn. Scott's endured an incredible amount, yet still has an incredible amount to endure. He's went to sleep in a good mood, as he realized he will have an entire week away from the hospital AND clinic completely. He needs that. His body needs it.

If anyone is interested, I've obtained an electronic version of his entire treatment protocal as a .pdf file. Just email me and I can email a copy to you.

Off to bed for me now too. 3 days off for me. 4 off for Derry. And hopefully a nice quiet week for Stephanie and Scott.

Release coming soon.

Quick note here - Scott has been cleared for release today. He's currently got Emla cream on his legs to numb them for his leg shots. He'll be getting them soon and has to wait 2 hours afterwards, then he'll be released. All his discharge papers finished already.

Bizarre stuff

Last night's 1 a.m. reading came back at 0.2.

Yes, it went UP.

Then back down to 0.11 at 1 pm today.

So deja vu - he we sit awaiting another 1 a.m. result to be freed. Which is okay, except tomorrow morning is clinic day again. Which means regardless of release orders, Scott is due his 5th pair of Elspar shots in his legs. So he'll have to get those and be held for at least 2 hours afterwards.

I don't know how people that have to travel long distances to their hospital would deal with all this waiting and uncertainty regarding release days.

Some folks have inquired to me - "how do all of you deal with this?" I looked them dead in the eye and respond quite clearly:

"I don't know. You just do it on some type of automatic functioning."

None of us certainly think straight right now. You just go day by day. Or test by test. There is no beginning, middle or end - just a continual stream of issues.

Scott had a visit today from a few of the TECO folks that I work with. They loaded him up with a big bucket full of goodies. Lots of chocolates. PSP games. Trucks. Bears. A wallet with some cash in it. A very thoughtful thing from some folks that, other than pictures, had never laid eyes on Scott.

Not even going to say we're hoping he gets sprung in the morning (obviously we want that everyday). Maybe we're putting a jinx on the poor kid. If he makes it out tomorrow, it's only 2 weeks until the next - and last - round of this high-dose Methotrexate mess.

We'll all be glad to see it go.

Waiting Game

Waiting seems to have become the norm. Scott methotrexate level has managed to dwindle to 0.17 as of the 1 p.m. bloodwork. Moving slowly. Just hoping to reach that magic threshold of 0.10 at 1 a.m.

He's fed up. And I'm sure he's having thoughts about the next round to come. Which is supposed to be the last round of the high-dose, 24-hour infusions. The study results of his protocol (before it became a standardized treatment protocol) showed these four rounds of high-dosage proved to decrease relapse rates in T-cell ALL cases for kids. We certainly hope it does just that, as it has proven a very rough part of the process to date.

If he gets sprung tomorrow, it will be right back to clinic on Thursday for Elspar shots again. No rest for the weary in this battle.

Derry and I spent the evening at home. Derry needed the break from spending every waking moment at school or the hospital. So he and I took in the hockey game from the couch to give him a breather. Focusing on school at this time can't be easy for him. I know focusing on work is itself a major challenge through the day. He misses his brother. Misses his mom. Worries about the same thing we're all worrying about. Derry is handling this ordeal in a very mature manner. One wants their kids to mature properly, but not at this rate, and certainly not with this type of catalyst.

Both Scott and Derry just need to be "kids". It keeps you awake at night thinking how much of that is getting robbed from them right in front of your eyes, with absolutely no control over it occuring.

Down to .35

Blood meth level down to 0.35. Hoping to spring Scott from the hospital at some point during tomorrow. Hoping really hard this happens. His next bloodwork is due at about 1 a.m., so we'll see what that offers.

He's really getting depressed during this stay. He is just not happy with spending so many nights on the ward. I can't blame him. Tonight will be his 25th night in the hospital. 25 out of the last 68 days. No one can blame him. His mouth sores are still causing pain. His blood pressure has been elevated for the last 24 hours, but finally eased when they checked it about 8 tonight. Mostly caused by the stress of the whole ordeal piling up on him. At times he's laying in bed, nothing said and you turn and look and there are tears streaming down his face.

Chemo is relentless. It is designed to kill cancerous cells, yet knows not the difference from the cancer cell and similar healthy cells. It takes heavy tolls on Scott. It takes heavy tolls on all these kids here. The disease takes it toll on patients and family. It is relentless. A mere 17-year-old boy that fought Hodgkins for 6 years starting at age 10 picked up his dog 4 weeks ago and felt something in his back. Tonight, he's a few doors down from Scott, having been flat of his back for 4 weeks now after surgery to remove tumors along his spine. Still leaves the two in his brain. I've spent a good deal of time talking with his dad, and he says the same quiet tears come on his son at any given moment.

Or the two teen girls admitted and diagnosed the same night as Scott. All three patients and families just getting to learn what it all means. Or a little baby girl about 2 - who seemingly has other things happening than just a disease and shows up in a playpen by the nurses with two black eyes, yet laughing and smiling at every person that walks by - but none are her parents. Or the kid that has been on treatment for over a year or more - kicking a soft soccer ball around in the hall with his sister, yet gets admitted because he spiked a fever.

Everything in the patient's life changes. Not of choice. Not planned. No preparation time. No experience or handbook. The parents and families - no different from the patient. Something totally new that effects every aspect of your life. The importance factor on virtually all things other than making sure everything is done for your kid - get very, very close to "that of zero importance" quickly. Things that used to light your fuse or inspire you with work or entertainment become of little interest.

And you search for bright spots, or "good" things. Like the 17-year-old's dad today. I saw him as Derry and I were leaving. We talked and he mentioned that Stephanie actually made his son smile today, which has become very rare. All because they were talking and his son said he liked Stephanie's accent, she replied that "she's no longer has an accent", and the kid smiled and laughed a bit. That's the kind of things you have to chalk up for "good" things when dealing with this horrid disease. Something so simple that in normal life would just be laughed away and not thought of again- yet this boy's father really noticed it. Just because he saw a smile on his child. And it was important enough for him to recount to me much later in the day.

Scott's diagnosed with "treatable" cancer. They tell you that is a great plus. "At least it's treatable" is a phrase used a lot. Everyone we've seen on that ward would certainly never be heard using that phrase. Treatable? Yes. But the treatment is brutal. It is cumulative. It is very, very hard on the body and mind of the person being treated, and everyone around them.

Crossing our fingers for a release tomorrow.

2 Visits

Two visits today. One good. One not.

The dreaded mouth sores showed today with a vengence. Just appeared. This makes anything next to impossible to swallow. The steriods have him craving fries from Checkers across the street from hospital. Nice, salty, seasoned fries - and a mouthful of those awful sores.

Not a good mixture. But he managed to choke down about 3 orders of them before just getting completely fed up and lying down for an afternoon nap. Not much walking or moving after all that. He's worried and upset about hundreds of things. I'd give an arm to be able to know everything running through his mind. Scott is a thinker, always has been. Always thought through things and then catch you off guard with one of his well-thought questions.

He's not oblivious to what is going on inside him. Not oblivious to the medicines involved. Not oblivious to what his body can't do right now that it could a mere 70 days ago.

A comment to me this afternoon pretty much summed up how this makes innocent kids think. I asked him what was bothering him. He answered:

"I'm worried about my bloodwork, the methotrexate level".

A 10-year-old little kid. Worrying about bloodwork. It is maddening.

The other visit was a bit better. A group of military vets from the Military Vets Motorcycle Club - Tampa Chapter showed up about 11:30 this morning.

About 100 of them.

This was before Derry and I had made it this morning. Stephanie said the doctors allowed the kids out for about an hour in front of the hospital. There were very biker-like vets everywhere she said. Very loud group. Very giving group. Very emotional group. Scott literally had a pile of stuffed bunnies, apes, matchbox cars - just loads of stuff that literally filled the extra bed on his room when they got it back upstairs. He got one big ape thing that one of the guys was just walking around looking for a bit. Then he just went to Scott and said "I wanna give this to you".

Every kid had as much stuff. These folks showed up with a truck hauling a trailer just stuffed with things. Each person was walking around giving each kid they saw something. And not just giving them things. Talking with them. Crying with them. Stephanie got a few pictures, said she would have like to got more, but was a blubbering mess most of the time. As were most of the biker folks.

I wasn't fortunate enough to be there by then, but the thing that impresses me the most is just the gift of time these people gave for perfect strangers. Stephanie said most of them said they'd love to just spend all day there, but the hospital only allowed them 60-90 minutes, to keep all the kids on the medication schedules.

Such things are bright spots in today's very jaded world. Scott, and the rest of us, certainly need all the bright spots possible these days.

No more morphine

No more morphine was needed through the night. Very glad for that, as the stuff is way too addictive. Stephanie said he mumbled through the night off and on, and constantly was asking for hugs (Scott is a very "huggy" person normally, so that's not a bad thing). He's not complaining about his back at all this morning and is happily messing with the computer.

His methotrexate level has drop down to 1.4, so that progress is going well.

He asked several times during the day yesterday if the laptop had "that writing thing" on it. He was talking about Word and said he should start writing a story about himself everyday. So he may start making his own journal. Anyone know of any journal-writing software out there? It is not something he'd want on a place like this. Something he can keep for himself privately. At this point in time, writing a lot with pen or pencil is just not an option.

Hoping for a calmer day today for him.