Monday, December 31, 2007
I guess that'll be the dour Scotsman in him. LOL.
Happy Hogmanay to you all and lang may yer lum reek (wi ither fowks coal!). I'll sign off my last post of this dreadful year with a couple of beautiful treasures...
Thursday, December 27, 2007
However, his biliruben level was very high today, much higher than it has ever been, and this is a concern. It had been thought that the high level was due to chemo and the liver struggling to process such a large amount of dead cells. This does now not seem to be the case as we have had five full weeks of no chemo and yet an increase in biliruben. Quite a lot of blood was drawn and a hepatic viral panel will be done to see if this can give us any idea as to what is going on with Scott's liver. We won't get the results for a week or two.
So again we only recieved a half dose of vincristine. Whilst part of me is celebrating the fact that at least we are getting chemo again another part of me is very worried indeed. Something is screwy with the liver enzymes and some of the virus's they are checking for are very nasty indeed. If a virus is not diagnosed then Scott will be refererred to a specialist.
Until this is resolved we will be on half chemo. Not good. Also, for as long as we have this biliruben issue, we will likely see more delays and concerns with his treatment and bone marrow recovery. Whilst his body is trying to fight this virus, if that is what it is, his counts will be effected and take longer to recover.
We will all sleep better tonight for sure, but still there is unease. T-cell is a such an aggressive leukemia, and to kill it requires consistent high doses, not pansying about like we are now.
Kind of a sick line of thought when you're happy that your child can get poisoned shoved in him, but that's the way things roll.
We'll post more later, but this is a HUGE relief to us all.
Monday, December 24, 2007
Scott has been singing this all day long, he says it is his favourite Christmas song ever (amazing what a little brain-washing can accomplish eh!!) but I think he just likes to get away with a few naughty words and call it "being Christmassy". For me, this has got to be one of the best love songs ever written, it also brings back memories of spinning around my little house in Scotland with a baby under each arm, singing my heart out, not a care in the world.
Screw you cancer.
Thursday, December 20, 2007
We got a rise in counts (YAY) up to 450 today, great news sure, however Scott's platelets took quite a hit from last week, we are now at 130.
High biliruben again.
The doctors are holding the bma again, it will be done next week if we are not at 750.
So we have a bit of a mess, and I just dont know what to think.
Thank you to Steve, Susan and Taylor for your kindness and love and yeah, thanks for the prayers too. You guys are amazing.
Monday, December 17, 2007
Thursday, December 13, 2007
Wednesday, December 12, 2007
Tuesday, December 11, 2007
That is Stephanie's dad, Graham, in that picture. She took it while we were on a little boat journey just over 2 weeks ago. Graham was here just 10 days ago, and I wrote about how I hated when people left at the end of a visit.
After getting home from clinic today, we were all a bit upset with little progress in Scott's counts and the usual uncertainty that comes with delayed treatment.
Shortly afterward, we had a call from Christine, Stephanie's mum. We didn't get to the phone before the machine got it, but Stephanie said her mum's voice sounded as something was wrong. Stephanie got back with her.
Something was most certainly wrong.
Stephanie's lost her dad.
I'll not go into details of how things were found out, but Graham was found dead in his home in Ireland today. We don't know many details, except that it happened either Friday or Saturday, and whatever happened was sudden and quick.
I'd just met the only Father-in-law I've ever had 3 weeks ago today. He was a very kind man, and upon us parting at the airport just 10 days ago he told me "thanks for taking care of Stephanie". And then he was gone. Little did any of us know.
It's very late and I'm very tired and weary. Everyone here has taken this very hard. Our nerves were shot to begin with, now they don't exist any longer.
I'll leave you with a couple of pictures taken the same day as the one above. Graham was taking a dip at the beach off John's Pass. I kept taking pictures, as I wanted to catch him in the setting sun to see if they would turn out ok. We had no idea his sun was setting. The last one is, well, just Dad and Daughter.
Rest easy Graham. We all love you.
Monday, December 10, 2007
That is encouraging, as relapse would be the most horrific news. However we're just in another holding pattern until Thursday's clinic visit, which does nothing to change us from having frayed nerves for another 3 days.
Scott is very upset at the news. The reason why is telling evidence of what this disease does to everyone. He's upset because - to quote - "I wanted to get my chemo and start steroids". It is a sick, twisted situation which makes a child of 11 understand what chemo is for and to be that upset when he can't get poison shot into his body.
So I believe Scott, Stephanie and I may hang around the rest of the day trying to do something mind-numbing.
Thursday, December 6, 2007
But all is uncertain.
Just endless worry until Monday. Nothing removes the worry. Nothing removes the fear. There is simply too many twists and turns and possible combinations of factors which can cause counts to stay low.
It a sad perspective when we sit here hoping Scott's fighting a virus. Or hoping it is just that his body can't handle the Bactrim and the schedule of chemo in maintenance and bounce back to the proper levels.
That's what happens if things are good.
Things really need to be good come Monday's tests and BMA.
A bit of a good note tonight (actually a great note, but we're a bit subdued here). Scott's buddy Pat won the Viewer's Choice CNN Heroes Award. It was on live tonight. We're very happy for Pat. Scott was quite excited when they said he'd won.
The doctors have taken him off Bactrim (antibiotic) and put him on Dapsone, Bactrim has been known to lower counts, we are hoping this is the case. It is also possibly viral, although the only sign of ill health recently has been a sore throat - 2 weeks ago!
David and I are very, very scared.
Scott is obviously upset and concerned, but also he is sad at missing tonights outing (due to low counts/neutropenia) that the Children's Cancer Centre had arranged. They were going to have their portraits taken, then on to Build-a-Bear (which he loves) and then icecream.
My fear is overwhelming.
Edit. I have just had a nurse at St Joes call me, the bma has now been brought forward to Monday.
Monday, December 3, 2007
You see, awhile back a couple of very nice ladies from the Brandon Foundation stopped by the house. They are a local group of folks who have only one goal - to help out families in the Brandon Community. I know that sounds simplified, but doing just that is what makes a "community". During their visit, we basically talked about what the Foundation does, and then they asked what type of things they may be able to help with. Of course all Stephanie and I could think of were things for Scott, and we told them he was asking for a comfy bed (which I posted about a few weeks back when we were called literally days after their visit to go and pick one out). Stephanie had mentioned Scott was going on about Christmas lights on the house. He wanted to decorate the house with lights for Christmas. We'd been doing some looking around for lights and such, but Stephanie would stop me and say "it's too early" or "let's just leave it today, we have other things to do".
I never knew this was in the works. Only Stephanie did.
Sunday, I suppose shortly after we left, a small army of folks from the Foundation's Angels Among Us arrived. I was told they were here somewhere between 2-3 hours. They were here for no other reason than to make sure Scott had lights on his house for Christmas. For the record, here's a picture of them in action:
And here's most of the group, minus a few of the wee ones that had retired to some A/C:
I know Natalie Brock is in there. As well as Shawn Trotti and her husband and I believe Liz Brewer. It's hard for me to remember all these folks, as the last time I saw them (and the only time I saw most) they were dressed to the nines for the Foundation's Evening of Hope I attended.
We are all just staggered and extremely thankful. Such people - most being folks we don't even know, a few we've met briefly - taking time out of their weekend to make sure a kid dealt the hand to deal with cancer has lights on his house for Christmas. I'm humbled by such an action, and I don't know if I could ever properly thank each and every one of these wonderful people.
During conversations I have with different people about this ordeal, the subject of "losing time" seems to always come up. Simply dealing with cancer as a parent robs you of time, regardless if things are going well or not so well. Time is in short supply most every week. For virtual strangers to give some of their's is truly a priceless gift to us. The folks in that picture above are some very special people indeed.
Saturday, December 1, 2007
It pulls you into a sort of shell. Sort of like a turtle does when something is around it's not familiar with - the turtle just pulls into his shell for the comfort and protection. Inside the "walls of home" things seem at their safest. Tucking the family away inside brick and mortar is akin to pulling into that shell.
I believe it is because that allows one to insure the family is in the safest place possible - regardless of what is happening. Because the ultimate priority is to protect and care for the family.
A situation as this puts one at odds because you can't hide in the shell. The enemy is within the child. Hidden from Stephanie and I. It's only predator being concoctions created by other people designed to kill the enemy, but with uncertain success and uncertain side effects. But it is the only weapon.
It makes one powerless, because protecting the family is not done on a first-hand, direct basis.
The family is what matters to us. Stephanie, David, Derry and Scott. Of course that's the family within the proverbial shell here where I type.
The family certainly expands beyond the immediate shell, somewhat of an extension of the shell.
I write about "family" sitting here late tonight because endless thoughts bound through my head. Sparked by many things. Many actions from the extended shell.
The instant action and shelter Stephanie and the boys received after being forced back across the pond. Christine. Mo. Lorna. Nana. Other options available with Graham.
Having my parents come down each year just after the traditional family Christmas Day Mania which happens in the house I was born in each year, but I've missed most years since I moved. (Not to mention all the packages that have shown up since Scott got sick).
Christine and Eric's visit in the "good" times which is now in a corner of our minds labeled "Before Cancer".
Having my sister appear at the hospital the day after Scott was diagnosed, having just flown down after leaving my dad's hospital room as, ironically, he was in surgery the very same day Scott's was put under for the bone marrow aspiration that confirmed our fears.
Christine returning on very short notice when Scott suffered the stroke. All the way across an ocean just to play taxi driver and whatever else we needed.
Graham coming over and all at once having to catch up with Stephanie and the boys, meet a son-in-law for the first time and get a whopping dose of the cancer life all at once. Also getting to swim in a sea and an outdoor pool in late November, and that Great-American experience of shopping the day after Thanksgiving (for the record he REALLY liked Sports Authority, and we hope he got everything he bought back okay).
And lastly, today something that just floored Stephanie and I. I thought someone had lost their marbles paying so much to mail a card (it was sent Express Mail). Luckily they haven't. What was in that card I'll only say was everything we'd always done at Christmas, but it all ended up here. A little piece of white note paper in the card was the most valuable thing in that envelope to us.
My point is, all the things I mention above - while seperate instances - are just one thing. All those things are simply "family".
The perspective of things change drastically when a child is diagnosed with cancer. You really learn what really matters.
What really matters?
Nothing is more important.
Yes, our family is battling a bitch of a beast that infiltrated the shell. There's nothing easy about it.
But we are thankful our shell spreads far and wide.
Friday, November 30, 2007
Sad because we sit in wonder about Scott's counts.
Sad because Matt Gliddon has relapsed.
Sad because it seems too many of Scott's normal "clinic mates" are inpatient this week.
Sad because I took Stephanie's dad to the airport this morning. I hate when people leave from visits.
We'll post more about the few things we did while Graham was here. He got to experience SmackDown, hockey, a boat and beach and clinic. We just have to hustle around to get to two Christmas parties tonight, and get Derry dropped off at his teammates house for hockey (he'd rather hockey practice than party).
The two of them worked together for about 10 to 12 years, they were lumberjacks and exposed to constant exhaust fumes (benzene!), both Scott and the other child were concieved during this time. The only other man they worked with died of lung cancer.
I had read before about pre-natal paternal transmission and thought this could be the cause of Scotts leukemia. I never really dwelled on the cause too much, it didnt matter, only cure mattered, and still does.
This news is very sad but also very eerie too.
Thursday, November 29, 2007
Yuppers, its that day again and Im so damn scunnered Im not going to write much. Scott was supposed to start his 3 week cycle today, but you know what they say about the best laid plans and all that. His counts dropped from last week and his wbc and anc sucked. Well thats it, Im not saying anymore, or one of you would send the men in white coats to come get me and whisk me off to Bedlam.
Leukemia is one mean bitch.
Wednesday, November 21, 2007
Monday, November 19, 2007
Not much word here since Thursday, as we've been rather busy. Friday saw us headed off to another Lightning game, which turned out to be another win against Washington. Friday night was Tampa Bay Fights Cancer night at the game. This was sponsored by the Yerrid Foundation. The same "Yerrid" (Steve) that put on the fishing derby last weekend. All the support groups were present. The Children's Cancer Center. The Pediatric Cancer Foundation. The Children's Dream Fund. The Leukemia and Lymphoma Society. Free shirts. Free food. We had a blast, even though we dumped Derry at his hockey practice (his choice) and took my friend Brandon along for the game. A special thanks to a person that donated primo seats in the AFS Club to us for the night. Stephanie manage to find a nice comfy couch where she could see through a portal and watch the game on the massive HD screen the Forum installed above the ice this year. It also allowed her to people watch and visit with her favorite NHL ref, who I think thought Stephanie was up to no good when he saw a strange man sitting next to her (That would be Brandon).
Saturday was a full day as well. Stephanie blew up the vacuum. Me and the boys went on a jaunt to a local store to meet Batista, one of the WWE wrestlers.
What a mistake. I never knew so many people showed up at appearances by these guys. The boys said they didn't want to wait in line for 2 hours to have the guy sign their dvd's. So we bailed after sneaking into the produce section of the market and snapping as good a picture as the 2-hour wait would have provided.
After that, we were off to Derry's hockey game. A minor miracle happened - they didn't lose! They didn't win either, another tie with the Black team, which has an old neighbor on it. Derry attempted to tackle Bryan (the old neighbor) during the game. The refs didn't call a penalty. He also did some smack-talking to another kid. He told us he said something bad to him, but won't tell us what. At least he's starting to play with some attitude, which is always needed in sports but also a fine line to walk.
Rushing home from there, I abandoned the family and headed to the Brandon Foundation's Evening of Hope. These are the folks that made the contacts to get Scott's bed, and are working on some other things for us. It was a swank affair (I had to wear a suit) designed as a fundraiser and recruitment vehicle for the Foundation. It is amazing at the number of folks in our community willing to help perfect strangers. A pleasant surprise. I did barely miss out on my bid for a round of golf for 4 at River Hills. Have to work on that.
Yesterday was "prep day". Stephanie's dad is likely landed at JFK in NY as I write this. He'll get down to Tampa later today for almost two weeks. This meant we had to buy a new vacuum, which the price shocked Stephanie. I told her to remember that if she tried to blow up the new one. She also loved being dropped at Wal-Mart on pre-Thanksgiving Sunday. It took her 2 1/2 hours to shop. LOL. Yard work done. Deck cleaned. I think she's breaking in her new vacuum at this time.
That's all for now. Scott is feeling okay at the time. He seems to have "motor mouth" disease the last several days. Just won't stop talking all day long. We just waiting for Stephanie's dad to arrive. The boys can't wait, as they've not seen him in some years. But also because WWE Smackdown/ECW is tomorrow night here in Tampa, and we'll be back to the Forum to see it. Thanks to the TECO folks for allowing me to purchase tix in their suite. Being in a controlled environment like that makes trips to crowded venues much less stressful.
Scott has been feeling great all weekend (touch wood), but this is probably due to the ... GRRR ... half dose. We have been puppy sitting these last few days which has thrilled him no end and he is so excited as his Grandad is flying in today from Ireland. Also, we have Smackdown tickets for Tuesday!! I hope my dad isn't going to be TOO shocked at the mindless violence!
Well, cant blether no more, got to go and clean, clean, clean, I may even make a cake. Got to create the "good little housewife" illusion. :)
Thursday, November 15, 2007
I didnt make it to clinic today as I had a bit of a problem. I was rooted to the bed! I woke up at 4.38am and couldnt move, not only was I stuck but I really really needed to pee!! I wont go into all the gory details but it took almost two hours, and the threat of an ambulance before I just decided that I needed to pee more than I cared about fracturing my spine, so with a bit of a swear and lots of bravery (LOL) I just sort of threw myself onto the floor (in a dignified manner ofcourse) and crawled forth, toilet bound. And got stuck there too.
So anyway my wonderful husband gave me the day off clinic duty but before he left with the boys he gave me two magic beans (which had probably been sold to him by a rather strange and wizened old man down by the chemo shop). So off they trot, I swallow the beans and before you know it Im flat on my back, cant move a muscle and spaced out of my skull. I would tell you all about my wonderful trip but cant remember a thing except that my telly had morphed into some freak spilling portal. Oh well, maybe now I understand my sister a little better. Ahahahahaha, she's gonna kill me for that!
By the time David and Scott got back from the clinic I was feeling pretty darn chipper, poor David's nerves were shot at having spent 5 hours surrounded by nervous cancer parents and lots and lots of pesky little children, and Scott was having a full scale roid raging meltdown. Then Derry got home, grunted at us and plugged himself into the World of Warcraft.
Later David took me to the chiropractor and she had the cheek to tell me I "had a knot" .. snort... I dont think so!! Several dislocated vertebrae perhaps, but not a knot. She slapped me around a bit, gave me a bill (and David a lecture on magic beans!) and told me to come back in a few days ... for another bill!
Just another day in Paradise.
Wednesday, November 14, 2007
Scott has been feeling dreadful, if its not pain its sickness, if its not sickness its the doldrums. Not a happy boy these last few days.
Thats all for now, we are all worn out and a bit down. I'll update tomorrow after clinic.
Please keep voting for our friend and hero, Pat Pedraja. I am so thrilled he won the Young Wonder's category, he is now up against the adults in the finals. Thanks for all your votes, keep them coming.
Saturday, November 10, 2007
Friday, November 9, 2007
Thursday, November 8, 2007
Here they are at clinic this morning, both kids were having a tough day (more about that later) but at least they had a little time before their medications for a video game and a smile.
Wednesday, November 7, 2007
Then a couple weeks back, two women showed up from the Brandon Foundation. They were steered our way by Anissa, who is the mother of a little girl named Peyton who is being tretaed for leukemia as well. This is a group that just helps folks with different things. I can't think of a more concise way to explain what they do (and I'll dig out their website later today). The ladies that stopped by just explained the types services they could provide - all donated by local companies or individuals. They had a whole list and told us just to drop them an email after we'd thought about how they may be able to help us.
We thought about things on the list and came up with two things - some help with painting on the house and a "comfy bed" for Scott. So Stephanie sent an email out sometime Monday. Around about dinner time she had a reply explaining what to do about the bed issue. Someone (still not sure who) at Famous Tate had instructed them to have us come in and they'd donate a new mattress of a certain value to Scott. So off we went last night to the Brandon Famous Tate. The whole process was simple with the help of Jack Ryan at the store. He looked at the paperwork left at the store concerning Scott and basically showed Scott which ones he could have and to test them out, then tell him which one he wanted. Scott picked and Jack said "we'll do our best to have it there tomorrow".
And we had to do no more. No papers or anything. We also discovered one of the employees at the store, a young man in his mid-20's, is currently in treated for lymphoma. We chatted with him for a few minutes, as that seems to happen when you cross paths with someone else dealing with cancer.
I'm just floored and humbled by such things happening. The world is a very jaded, self-centered place these days. But among all of those types, some truly good people are out there. Willing to do or provide what is within their means to help complete strangers. We knew no one at Famous Tate. I'd never been in a Famous Tate store, as they are local to this area and I've had no appliance needs since we moved here. But I can guarantee you they'll have our business for the things they sale from now on.
We'll update you on how Scott gets on with a new "comfy bed".
Monday, November 5, 2007
Friday, November 2, 2007
Wednesday, October 31, 2007
Anyway, great night for Scott, and David too, all dressed up in his old hag mask and scaring the cute little neighbourhood kids half to death. Derry refused to join in, apparently he is far too 'mature' for such silliness so he plugged himself in to some thrash metal and shot up zombies on the 360 instead.
Off to bed now, clinic tomorrow and hoping for good blood.
Oh and ps, a HUGE thank you to Grandmomma and Papa for spoiling us yet again with a big box of wonderful Georgia cookies. Much appreciated by all, thank you.
Tuesday, October 30, 2007
Monday, October 29, 2007
I don't really have to say much more about such a gesture.
I am rather certain a couple of other folks played a role in getting this into the ear's of the right media folks, as it got picked up and on air very quickly when some calls were made. They will remain nameless by request. You know who you are, and thank you.
As Stephanie said, we've come to know JJ and Maria quite well, having met under circumstances no one wants to face. JJ came to St. Joe's and diagnosed just a week after Scott.
Watch the video.
At least JJ has her chance now.
Insurance companies and medical costs be damned.
Sunday, October 28, 2007
Friday, October 26, 2007
So anyway, off we trotted to the dentist, worried sick about how much damage the chemo may have caused, however we were thrilled to found out all he needed was a filling and a baby tooth pulled. No big deal right?! I won’t go all graphic on you but let’s just say it wasn’t pretty. David has finally stopped shaking but is probably traumatized for life and Scott has spent much of the day learning how to craft a voodoo doll (that looks like a dentist).
Anyway on to better things…. Scott received an invitation completely out of the blue, he has been asked to be on a panel of judges to decide and vote in the annual “Kids are Heroes’ competition at St Joes Hospital on the 13th November. It should be cool as one of his favourite hockey players is also on the panel.
Also, a HUGE thank you to Fore the Children, a local charity aimed at helping young people through their cancer journey. They have awarded a grant of $750 to Scott to pay for private skating lessons. As you know Scott can’t participate in team sports at the moment, a fall or a knock to his port could prove very dangerous, so any ice time must be one on one with no other kids liable to crash into him. Private lessons are not something we could afford at the moment so thanks to Fore the Children for their generosity and for giving Scott the opportunity to get back out there and do the thing he loves. He is still rather frail right now but we hope to have him back on the ice in the next few weeks.
I also wish to thank Scott’s chemo-angels for their ongoing support. Every few days Scott receives a letter or card or gift from Angel Laura or Angel Dave. The encouragement, generosity and kindness are much appreciated and make such a huge difference to Scotts emotional well being. Thank you also to Lisa Keeler for surprising Scott with a big box and a cool gift. He loves his planetarium and thinks you are an ‘Awesome Aunty’!
Update on JJ.
Her story has been picked up in the last few days by a couple of news stations and charities and I feel sure it wont be long until money is in place to pay for her to go to Sloan Kettering for her first round of 3F8. 3F8 will increase her chances of survival from 0% to 35%. I know that everyone who hears or reads about JJ knows that at the very least she needs a fighting chance and I can’t wait until I can post here that she is on her way. JJ has been through an incredible ordeal already but every time she bounces back and I think if there is any child who would do well with the antibody treatment, it would be JJ. For anyone local reading this please know there is a fundraising day for her tomorrow, details as follows:
Saturday 27th October, 11am – 4pm
Land O’ Lakes Community Centre
5401 Land O’Lakes Blvd (US 41 North)
Please visit the above caringbridge site to leave words of encouragment or comfort, I know the support means a lot to Maria and all your messages are passed on to JJ. Also, if anyone would like to make a contribution to JJ's fund please let me know and I will let you know where to send your donation. No amount is too small. Thank you.
Well that’s it for now, its late.
“Time for bed”, said Zebedee.
Tuesday, October 23, 2007
Now on to "Scott" topics.
Sometimes folks ask “Is Scott done with his chemo now?” That is a hard question to answer when asked by someone not privy to all the gory details involved with a leukemia treatment protocol. Yes, he has completed all the dosages of certain drugs and treatments (Doxorubicin, High-dose Methotrexate, radiation and Luvenox). But Scott will be “done with chemo” (if all things stay on schedule) sometime in March 2009. Just to give a bit of insight to what he (and we) deals with, I decided to give a summary rundown of how his cycle works. And this cycle is the “maintenance” portion of his protocol, which will be the case from now until Week 108 (this coming Thursday will be Week 38). I think I have things mostly accurate and have included everything, Stephanie will correct me if not.
Keep in mind the following:
Steroids need to be taken with at least some food in his stomach.
Bactrim should be taken with some food as well.
6mp (which is a chemo drug) must be taken at least an hour prior, or 90 minutes after eating.
Pepcid is taken when needed. As are Tums. As is Benadryl to help sleep. As is Ativan when necessary at home. And Tylenol w/Codeine.
The IV drugs in clinic tend to be pretty good at causing nausea and vomiting, even with premedication to prevent such.
All of the above makes some of the drug days a juggling act which Stephanie carries out with sheer will. At times she must be much colder and forceful than a mum should ever be required with a child on a cancer treatment protocol. Poor Scott basically only wants her and the clinic nurses to administer his drugs now. He’s not comfortable with me doing them.
The “cycle”, as we have come to call it, is 21 days (starting on Thursday) and as follows (today we are on Day 6 of the current cycle):
Day 1 – Clinic visit – Finger prick. Port accessed if counts above 750. Premedicated with Ativan, IV Vincristine and IV Methotrexate. Steroids start for 5 days, 3 doses totaling 150mg/day. 6mp starts for 14 days, given in the evening.
Day 2 – Steroids 3 times, 6 mp
Day 3 – Steroids 3 times, 6 mp, Bactrim twice daily. Steroid-induced, ravenous eating usually begins. Jaw pain tends to begin as a Vincristine side effect.
Day 4 - Steroids 3 times, 6 mp, Bactrim twice. Pain usually starts in back as well. Stomach aches start coming, as his stomach starts to be stretched by all the food he is cramming in. This weekend in the cycle is usually rough, as Scott tends to start the emotional effects of steroids as well.
Day 5 – Steroids 3 times, 6 mp, Bactrim twice. Pain tends to leave jaw, remains in back.
Day 6 – 6 mp. Pain in legs and feet, and sometimes back.
Day 7 – 6 mp, Pain in feet and legs.
Day 8 – Clinic visit – Finger prick. Port accessed if counts above 750. Premedicated with Ativan, IV Methotrexate, 6mp. Massive food cravings usually begin to wane about this time. Feet still hurt.
Day 9 – 6mp. If we’re lucky, foot pain starts to ease.
Day 10 – 6mp. Food craving mostly gone, but stomach is stretched and large amounts of stomach acid are still produced because he is now used to eating 4 times what a normal person does. This typically results in nausea and puking each morning for a few days.
Day 11 – 6mp. This weekend, while usually the weekend with his highest counts, is most times inhibited by lingering Vincristine pain and the erratic nausea from stomach acid.
Day 12 – 6mp
Day 13 – 6mp
Day 14 – 6mp
Day 15 – Clinic day. Finger prick. Ports accessed if counts over 750. Premedicated with IV Ativan, IV Methotrexate. This is when Scott’s ANC is at its nadir. Counts usually very low at this point, and he’s missed an IV Methotrexate due to an ANC below 750.
Day 16 – No scheduled drugs. Scott usually feels his best about this time in the cycle. Sadly, it comes at the time of his lowest ANC during the cycle, which makes preventing exposure to bugs, germs, crowds, etc most important at this time. This tends to have us forego crowds over the following week. So he feels best, but is limited to where he can go.
Day 17 – Bactrim
Day 18 – Bactrim
Day 19 – Bactrim
Day 20 – No scheduled drugs
Day 21 – No scheduled drugs
So there you have it. That is the “routine” for the next 18 months or so. Just some insight as to what he faces every 3 weeks. Maybe that will explain to folks why we sort of hesitate when someone also asks “How is Scott doing?”. That’s a very hard, relative answer.
Thursday, October 18, 2007
As far as I understand it though, this therapy is still experimental (but very succesful!) and guess what, due to this factor, her insurance company wont pay. I know that Maria has been fighting and pleading with them for weeks now and still they wont budge. Maria and JJ cant wait any longer, JJ needs this treatment within the next few weeks. The oncologists at St Joes and at Sloan Kettering in New York have recommended 4 cycles, each cycle costs 18 thousand dollars! I am not asking for donations, this isnt a begging letter, I promise. But please think of this little girl and her mother, and if anyone reading this knows of anywhere, anyone or anywhere at all, we can plea to for funding then please let me know.
I can be contacted at firstname.lastname@example.org and will pass on all correspondence to Maria.