Saturday, March 31, 2007
A larger dose of morphine. Not exactly what one wants their 10-year-old to have.
An abdominal and chest xray was ordered with the call to the doctor as well. His abdominal x-ray showed excessive gas building up in his intestines, which could likely be creating the pain and radiating upwards into his back, just between the shoulder blades. Scott can't even get off the bed at this point. He can't stand solidly on his feet. Can't walk the halls. Can harldy sit up without bursting into tears.
Once again - uncertainty.
Derry and I just got back home. It is painful to walk out of the hospital when the chance of another horrid episode lingers just a couple hours away when the current dose of heavy-duty drugs wears away. Scott was very clingy and emotional, even in the fog of the drug. The toll of the treatment seems to compound with each of the heavy doses. It beats the cancer down, but also beats all the good cells down as well. There is nothing remotely close to "easy" about any of the treatment. It is all just pure hell for him.
He's got another round of bloodwork coming at 1 a.m. Hoping to get at least another good drop in the methotrexate level.
Scott had a bad back spasm or pain this afternoon. He got up to wee in his jug. When he bent over to grab his jug, his back up around his shoulders had a pain. When he tried to stand up straight, it got greatly worse, and he just bent down on his knees and laid down in the floor crying. Quite a scary thing. It took a couple of nurses several minutes to get him back up and in bed. Then about 45 minutes to get him calmed down. A dose of morphine helped that process.
Its horrible to have your kid go through such. It is just one thing after another. Now they've taken blood to determine if his liver is enlarged and caused the pain - luckily those tests just came back negative.
There are so many different aspects to dealing with Scott's nightmare. Uncertainty seems the only thing that is certain on any given day.
At the moment he's calmed down. Hopefully he can stay settled when his morphine wears off. He's plunking around on the web now. One of the TECO guys got me a laptop not being used that they let me take and get a wifi card hooked up on. The whole hospital is a hot zone, so he can surf around anywhere he may be. Little things like that occupy his mind and relax him greatly. Lucky to work for a client like the TECO people. They are some great folks.
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Friday, March 30, 2007
He started his next round of 6mp last night as well, I don't believe I mentioned that. He had to have it crushed, as he's gotten to where no pill will make it down normally. He's just got a big mental block about swallowing them right now, and will set off his gag reflex instantly.
We still wonder about the effect of slightly decreasing the amount of methotrexate he's receiving on this round. Will it be less effective than necessary? Is it the best thing to do to prevent long-range damage to the liver or kidneys? So many questions run through your mind and uncertainty is a factor at every turn. If one word had to sum up this experience and how things play out, uncertainty would be a good one.
Stephanie just said he is doing fine right now, and just finished his third dog visit since checking in yesterday. This one a red retriever name Lavie (I think that is correct). Good timing again, as this time of the cycle is usually when he starts getting down and feeling bad. We're just thankful St. Joseph's allows the Pet Therapy to be conducted. Some hospitals simply do not allow this process. We think it of huge value to Scott while he is inpatient.
He's hijacked the Xbox360 and taken it to the hospital. So he's playing that most of the day when he's awake and feels okay. Of course, the effect that has on Derry's home time is a different story. Derry is handling this rather well, even with him getting shorted on attention and free time. He even brought Scott back a little bear from his Space Center field trip yesterday.
Thursday, March 29, 2007
He did extremely well with the legs shots today. He's got a new breathing technique which makes him relax, and he barely flinched. Not a bit of a whimper at all.
Then he had a visit from Sunny. Sunny is another treatment dog. A big golden retriever, which came just after leg shots, so that was great timing.
Less than an hour later, Benji the Dog shows up too - and Scott puked right as they walked in room. They were asking if they should come back later, but he told them to stay, got cleaned up, and got Benji right up on his bed just a minute after being sick. Great timing again!
He's due 3 big doses of steroids tonight, which will be via IV. Then the methotrexate starts at 12. Due to his problem clearing it last time, the dosage has been dropped about 25%. The doctors are confident that it will pose no problems. Of course we worry to no end about any slight modification. But just have to take it a week at a time.
So the real fun starts in a few hours.
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Luckily Scott hasn't gotten sick in several days. Knock on wood. Maybe he finally recovered from the last methotrexate dosage - just in time to check in today for the next in-patient round.
No results from bone marrow or spinal tap work yet, but they've been done and he's checked back into room 237 at the hospital now. Right now he's just getting hydrated via his port, preparing for the high-dosage to start (likely around midnight tonight). He woke up asking for pizza, so that's a good sign. He didn't eat too much, but did have a bit.
He's still on-guard for his leg shots. So all his nervousness isn't gone just yet. Hopefully he can handle those as well as Stephanie said he did last week. I sure hope so. I don't know how a kid is expected to face that each week for 5 months.
I'll post more this evening when he's done with all the poking and proding for the day.
Sunday, March 25, 2007
His picture with Richards is at the top of the page, and we've uploaded several pictures of him and Derry with some of the Lightning to the photo page. We all had a great time, and once again hockey players prove to be some very nice guys.
Dental visits tomorrow for the whole family! Scott has to take a load of antibiotics an hour prior to his visit. We'll have to wait and see how that works.
Thursday, March 22, 2007
Blood work came back and the shots were okayed. Stephanie said he didn't cry a bit today, and did very well with them. Then just had to wait the mandatory 2 hour period in case of reaction.
Derry actually spent the morning there with them, as it is spring break in school. Stephanie said that eased Scott a bit. Probably because it wasn't just grown-ups all around him.
All went well until just a couple of hours ago. Scott got sick while we were waiting for Stephanie to come out of the mall. So the van got a good dose of Cheeto-colored sick. I was driving home with the windows cracked, and thought Derry was going to do the same, as he looked green and was holding his nose. Scott settled down right afterward. We believe he ate a little too soon after his 6mp pills this evening. You have to appreciate how the poor kid handles these episodes. He's barfing like crazy, Stephanie is walking across the parking lot. When she gets over beside him and the nice orange puddle, he simply says "hi mom".
So now we hope to have a good weekend and get him rested up for his next hospital stay which starts next Thursday. That visit starts with a bone marrow aspiration, spinal tap, intrathecal chemo and then the awful high-dose methotrexate. We've quickly come to hate those big bags of yellow stuff. 3 down, 17 to go on the dreaded legs shots.
AND we have a fresh box of cookies - addressed to a "Skittles" and a "Prince Harry". But Stephanie and I are enjoying them as well.
Tuesday, March 20, 2007
But I must say it is very, very lucky that we have insurance that covers the drug. Even the nurse at the clinic said she'd have to check and get the okay from our insurance company to see if they would pay for the prescription. That's not unusual by any means, but after we picked them up we realized why.
They wrote Scott a script for 60 pills. Small things they are - just 8 mg each, and he can take a maximum of 3 per day "as needed". The kicker is the cost - which shocked Stephanie and I. The prescription cost was - for 60 pills - $2,100.
That's not a typing error. $35 each.
And the script has 6 refills on it. Do the math. The use of that drug for maybe a year at 1 per day would be $14,700. It's staggering. It's hard to believe.
What a family would do if they had no insurance is beyond me. I can't fathom anyone having children that are not covered by insurance these days. Not to mention there are lots of insurers that simply will not accept the cost of such drugs. Granted the non-disolving version of the drug is quite a bit less expensive, but having a child that is a nervous wreck already, taking several other meds and dealing with cancer makes the disolving form very desirable. As bad as Scott's sickness wears on us just from the standpoint of this terrible disease, what would one do with all the other issues tossed on top of those worries?
Just counting our blessing we have an absolute maximum out of pocket cost related to our insurance plan. I really don't know if it would work for Scott to have to swallow more pills, when the mental part of that is a large part of him throwing up we believe.
In business news - buy stock in GlaxoSmithKline, the drug maker. They should be making decent money!
Also found out today we'll be making another hockey game this coming Saturday night, courtesy of Brad Richards again. That should be a good perk for all of us again, especially after Scott's extended hospital stay last week. Only two weeks from then left until hockey playoff time, so it should be an exciting time.
Monday, March 19, 2007
He literally just broke down Saturday night after taking his 6mp - which is not to be taken with anything that is "citrus". The poor kids had gulped down his 3 pills and washed them down with Sunny D, which he emptied. He went to the frig to get another and came back with a worried look. He told me "David, I'm not supposed to take those pills with anything citrus!" - and showing the the Sunny D label that says "citrus flavor". I guess I had a total look of uncertainty on my face, as he instantly just started sobbing. Scared sobbing. I supposed he was thinking "oh no, I'm gonna have to go back to the hospital." I had to take him into Stephanie, while I went and rechecked the drug paperwork and Sunny D labels. It was nothing to worry about in the end, but is just an example of the details and types or worries a little 10-year-old should not have to be concerned with.
He also got sick this morning the instant he swallowed his Bactrim. Stephanie contacted the nurses, and they've got him a prescription for Zofran ODT, which is an anti-nausea script which dissolves instantly on the tongue. We'll have to figure out the timing for him taking it. Hopefully it works, as he's just a nervous wreck right now. He has way too much to worry about, and it is hard to really know the things going through his head.
Saturday, March 17, 2007
So Scott just has his home medicines to take this week. He does have to be back on Thursday for his normal clinic visit, which will include the dreaded leg shots for 18 more weeks. If all goes well, he'll have a week off after that until his next hospital admission starts on March 29. That will be the 3rd of what is currently 4 scheduled doses of the high-dose methatrexate (HDM). Evil stuff. We'll be glad to be done with it.
Off to be lazy bums the rest of the weekend.
Friday, March 16, 2007
However, his blood work did come back at 0.08, so that is great news finally. He will continue on with just IV's now for another 12 hour period we think. Nurse said that was what to expect, but she hadn't gotten exact order from Dr. Tebbi yet. Hopefully he'll now get release first thing tomorrow morning. That's what we're hoping at this moment.
Don't know exactly when that means he'll get released. HOPEFULLY he will get to 0.1 with today's daytime bloodwork. He was at 0.15 during the night test.
He got sick this morning when the same nurse came in with the rescue drug. Not when she gave him the drug, but right when he saw her. Guess it was a mental connection. But he has secured a "date" with one of his favorite nurses this afternoon for a coke and a visit to the Medical Arts building next to the hospital. He may have cancer, but he's still all boy!
This long stay is really rough on him, as well as all of us. Exhaustion sets in an basically becomes normal.
Thursday, March 15, 2007
It's a nightmare. He hates it. We hate it. The nurses even hate it, and regularly argue about who has to be the two to do it to any kid that is due.
Although very distressed, scared and unhappy at the time of the shots, he calmed down in a reasonable short period of time. Soon as he can stand and put weight on his legs, he gets a bit better.
The he had to have his port "de-accessed", as they can only leave one needle in for 1 week. So he had an hour without being hooked up this afternoon, then was "re-accessed" with a new kit. This wasn't much fun either, as his skin was tender from the removal of the Tigaderm which covers his port while accessed. Also a bandage wasn't put over the site as normally done. They simply reapplied numbing cream to reaccess him an hour later. This caused the normal small amount of blood to seep out under the Glad Press-n-Seal which they cover numbing cream with. That made Scott a bit woozy and nervous.
He's showing the effects of being stuck in the hospital for a week. Hips hurt. Back hurts. Neck hurts. Nothing feels right at this moment.
At least all but one of his mouth sores are gone today, and he woofed down a lot of pizza and cinnamon bread at dinner. And Benji had a return visit today. I don't think I ever mentioned that in the photo at the top of the page, Scott is with Benji during his first ever official visit to a patient. This makes 3 times Scott has had a visit from Benji. Stephanie came in and told him Benji was on the floor and Scott said "Good, Benji always cheers me up".
Gotta get him home tomorrow.
And it appeared their were a couple of new admissions to the ward there today. It has become a bit too easy to tell by the parents body language (basically a zombie look) and the demeanor of the nurses around them. Just too many kids. Scott's diagnosis and treatment is a nightmare. I told Stephanie this evening there is just something that deeply disturbs me to see the continual flow of "new" kids. It's heartbreaking to see them, but also throws your brain back 7 weeks to when we were in their shoes.
Wednesday, March 14, 2007
He also got another surprise, courtesy of a friend at TECO. Noriel used to work in TECO Corporate Communications department, and knows the director of that same department with the Lightning. He was able to procure a Lightning goalie stick signed by the entire team, along with some signed glossies and a signed puck from Richards. This played a major part in lifting Scott's mood and spirits, and is quite a nice gesture from Noriel.
The gesture comes from a guy with a big heart, and a bit of first hand understanding. Just about the same time Scott got sick, Noriel's little niece - JJ - also got sick. She is just a month shy of 3 years old. JJ had the misfortune of the doctors finding a tumor in her abdomen, which led to a diagnosis of neuroblastoma. JJ and Scott have both spent many of the same nights in the St. Joe's Children's Oncology ward just a few doors apart. JJ is currently being prepared for a marrow harvest which preceeds marrow transplants. She's a sick little innocent girl, and needs good thoughts sent her way.
JJ is another in the too-long line of kids seen at the hospital. Little kids are innocent. None of them deserve to have to deal with these things.
Doc has again up IV fluid rate, and told him this morning it will probably be another night stay. If that's the case, he'll have his leg shots tomorrow before going home, as tomorrow will be clinic day anyway.
He's not a happy guy and is quite bored. He did get up in time to watch "Deadliest Catch" on Discovery. Thankfully he didn't miss his crab fishing show. He's become addictied to the Discovery Channel, which isn't all bad I suppose, he could be watching something worse.
Just wish he was watching Discovery at home. He needs home time, as the next round of this particular chemo treatment starts two weeks from tomorrow.
Tuesday, March 13, 2007
He has spent time this week with the Homebound/Hospital teacher that works at St. Joseph's. He seems to do fine with her, and likely is benefitting even better than the typical classroom environment since he's got the benefit of 1-on-1.
He also spent some time with the hospital psychologist that works with all the cancer kids, and I think he got some stuff off his chest while with him. That doc thought the hockey games were a great thing, since Scott must have talked a lot about hockey during their time together. So he put a call in to the American Cancer Society, who by the end of the day left a message here at the house. I know getting him to as many games as possible would certainly lift his spirits. Even the lady that takes care of Brad Richard's suite commented on how he and Derry sat and watch every second of the game, and noticed Scott would make sure someone saved his front row seat in the suite while he went to the restroom or to get some food and drink. I guess the bulk of the cancer kids aren't hardcore hockey fans. Scott certainly appreciates the generosity of such folks. There's not much more he says he wants than to go to more hockey games.
Hopefully his nightime bloodwork will clear him for release. It should be taken around 1 or 2 a.m., and results won't likely be known to about 5-ish. They gave him an extra 30 minutes prior to blood draw this afternoon, and may do the same tonight.
Scott and Stephanie sound asleep and don't know yet. Just waiting on morning doctor rounds to wake them.
Update: Dr. Tebbi visited this morning. He's going to increase Scott's dosage of Leukavorin (the rescue drug/antidote for Methatrexate) and increase his IV fluids. He was already on 150 ml/hr and peeing about every 30 minutes, so who knows how much he'll be flooded now.
He has lots and lots of mouth sores now. Even some on his tongue. This makes drinking or eating next to impossible without great pain. Scott just wants to go home and see the cats.
Monday, March 12, 2007
Looks like another night in the clink. Next blood test comes at midnight tonight. Stephanie has him moving and drinking as much as possible, and he's craving food. But he isn't happy about not being paroled this afternoon.
Sunday, March 11, 2007
He is having a rough time with mouth sores this go round. So bad he's finally given in to the magic mouthwash with lidocaine. He just fell apart several times when he tried to eat some things. He was starving because the steroids that began on Thursday have kicked in full force now, and he wants food - but it was hurting to bad to chew earlier.
Finally went out and got some pizza, fries and garlic knots. He rinsed and swallowed the mouthwash, then just sort of forced himself through the first few bites and ate quite a lot at dinner time. Really stuffed himself. That made his stomach feel better, and should help the bloodwork along.
Right now, we sort of expect to get an okay to leave at tomorrow's 1:30 p.m. blood test.
He's in the "clearing" process right now. That's eliminating the massive dosage of Methatrexate from his blood. It's a matter of using the antidote and flushing with fluids. The level of drug in his system was 88 when they stopped last night, it was down to 8 at noon today. he must get to a level of 0.1 to be released. With some luck, hopefully he can be sprung from the hospital tomorrow, but they only check his blood each 12 hours, and he'll lose 1 hour tonight for his noon blood work tomorrow.
All of this gets confusing and complicated. It's easy to wonder about what goes on in the course of a 108-week treatment regimen. I've put a link up at the top of the page which summarizes the treatment protocol Scott is following. The link refers to the protocol as a "study", which it is no longer. It is one of two accepted treatment protocols for his type leukemia. You can also click here to access the page.
The key difference in the study which resulted in the POG 9404 protocol is the very high dose methatrexate treatments on weeks 4, 7, 10 and 13. This weekend represents Scott's week 7 dose, and his week 7 started this past Thursday (March 8).
The first round of this beat him down for about a week, and it appears this round will do just the same. It is hard to tell if this one is easier or harder. Those type comparisons are very, very hard to make, as none of them can be labeled remotely close to "good". It stresses us all. Derry gets caught in the middle at times, and we turn around an realize he's losing complete weekends during hospital stays. He and I come home and do what we can muster the motivation to get done, then head back to the hospital. He complains very little.
Still no idea when it will be "safe" to have any visitors. We just can't see how it will remotely be an option until the last two rounds of HDM are finished and he's recovered, which will be another 7 weeks. We watch the rooms fill almost daily at the children's oncology ward with kids coming in unscheduled with fevers or infections. Just today, the ward was half empty at 1 pm. As Derry and I were leaving just before 11 p.m., another child was on the way in, which left only 1 room open I believe. We cross paths with the same kids and parents regularly while in the hospital or during his weekly clinic visits. It seems you sort of get instantly immersed in a separate society - one that none of the members wanted to join.
Friday, March 9, 2007
You can Google "dystonic reaction" if you like. I don't want to write about it.
Dr. Tebbi is rather certain it was the Reglan that caused the reaction. They instantly put signs on his door to not administer that drug ever again. Soon afterwards, the nurses came back and told Stephanie that Dr. Tebbi had ordered no Reglan be given to any of the kids on the ward again. Obviously he's had some kids react, and doesn't wish to take the chance with anyone.
Scott's high-dose methotrexate started just after midnight last night, and will continue until tonight until the same time. He had virtually every other chemo treatment as well yesterday, including his first shots in the legs. They stick both legs at the exact same time. It takes two nurses. It is no fun. He did say his legs felt fine this morning. He has some pain in his hip from yesterday's bone marrow aspiration.
Right now he's pretty much knocked out thanks to Ativan and is sleeping. Thankfully he's compatible with that drug, as it may become a very good friend during these stays. And thankfully there are only two more of these type dosages of methatrexate.
What these kids go through is unbelievable.
Thursday, March 8, 2007
He is checked into room 237 now, and is again happily watching Discovery Channel. At least he's watching something somewhat informational since he's getting shorted on schoolwork at this time. Stephanie said he's in good spirits right now, but he didn't get the shot while under, but will have it about 4 this afternoon. Hope it doesn't dampen his spirits too bad.
Today is actually the beginning of the "consolidation" phase of his treatment. Everything to this point was the "induction" phase, which (medically) Scott made it through well.
Just got word that he's awaiting procedure and watching "Deadliest Catch" on Discovery, which he has become a huge fan of the crab fishers on there. More info after he gets done with procedures and put in a room upstairs this afternoon.
Monday, March 5, 2007
The eye clinic was a horrible experience. They have to numb his eyes with the drops that sting for awhile. Scott remembered this part of the process from the eye doc visiting him in the hospital. He was very nervouse going into the visit, and just got to the end of his nerves by the time he was in the exam room. Getting the drops in was horrible to have done, as he literally had to be held down by Stephanie in the chair. She had to keep his arms from moving and scratching his eyes while they were numb. All the while worrying about squeezing him too hard and causing bruising or bleeding internally.
Just a bad, bad experience all around for all of us and especially Scott. Something I hope we never have to do again.
Today thru Wednesday are Scott's first day since this started with zero drugs to take. But that only last until Thursday, when his next hospital stay starts. He's due a bone marrow test and spinal tap Thursday. Afterwards he's due the 24-hour dosage of Methatrexate. Everyone says the first treatment of that is the worst. We certainly hope so, or it will be a horrid weekend.
The "unknowns" in all of this are the hardest. The treatment is so long and complicated, it just runs endless thoughts through your head. What will be the side effects? Will he have a reaction to one of the drugs? What if his next test comes back with bad results? What if the nausea is worse? Too many questions. Too many possibilities. Not knowing what comes with the next test, or two months or two years from now. It just zaps the energy out of everyone.