Scott in the bath (wearing my oh so sexy shower cap) with such a swollen head we thought it might explode!! If you look close at his right shoulder you can see the scar where his port was inserted and attached to an artery.

Our pretty kitties ...

Thankfully Scott is feeling much better, the pains have all gone and his body is slowly shrinking back to normal. He still looks like a hamster though and weirdly enough is starting to behave like one too.
A couple of weeks ago I noticed that he had taken my “Happy Harvest” (ooh Sandie is going to love that) picnic basket from the kitchen and put it in his bedroom and was using it as a little table. It looked a bit gay but I thought it best just to keep my mouth shut. So anyway, today after a trip to the shops with David, he comes home with a couple of huge stickers with a devil/fox mutant sort of thing on them, and asks if I wouldn’t mind painting the picnic basket black and then putting the stickers on it. Okay fine, at least it wouldn’t look so damn gay! So I get the little Happy Harvest basket and go to remove the lid and find it jammed full of every treat he has been sent in recent weeks from his Angels. Also squeezed in were a box of Swiss Rolls, umpteen Pez dispensers a family size Doritos and nine packets of Funions.
Most definitely hamster behavior wouldn’t you say!
Oh but its okay. There was method in his madness. Yes, what a wise and worldly child I have raised.
His reasoning … he was preparing for the “Hapocolips”!!
I am still gob smacked yet strangely comforted in the knowledge that should a disaster of yet unknown origin befall humankind in the coming days WE ARE READY!

Scott did okay at clinic this morning. His anc was over 7000, probably higher than it has been since diagnosis. However the platelets took a dive (which makes me very nervous) but our lovely nurse Vikki made me look into her eyes whilst she lectured me on how good everything looked.
Scott still feels horrible but the pain is starting to ease now so hopefully he's over the worst. Until next time at least!!
He is still very hungry and presently fluttering his freakishly long eye lashes at me, pining for pizza. Thank goodness Pizza Hut take credit cards so we dont have to spend real money!

Well life continues to crap on us and good old Homeland Security/Immigration have managed to screw up YET AGAIN something which should be incredibly simple. Well I guess it keeps those amongst us with limited brain capacity in a job. Poor David is having a meltdown and stealing my pills. Derry thinks its all very funny and has started speaking with a Hispanic brogue. Scott is looking forward to real chips and chocolate and sleeping on his Nana's floor again and as for me, hell, my baby has cancer; the dude with the deportation stamp wont be winning my Halloween fancy dress competition anymore.

Besides which, we've jumped over them already, just to get to the fight!

Happy Hallmark Day to you all.

Just a quick update on my poor little man. The steroids and vincristine effects are back with a vengeance and Scott is feeling dreadful. It seems that with each new cycle the side effects worsen. So much for maintenance being easier. It isnt. I think I have said this before but although the high dose chemo and radiation are now behind us (hopefully) his body and mind are so exhausted that even the maintenance drugs have now become a real challenge.
His mood swings from the steroids are distressing; tears, anger, sadness, they just roll on, one after the other. Then there is the constant hunger, swelling up his face and body and fighting with the pain of the vincristine. How cruel to have such a raging hunger combined with pain in his jaw and head. He is also very aware now that the pain will worsen in the coming days, moving from his head, down into his back and eventually his legs.
Until recently he never took pain medication or anything to help him sleep, he just bravely soldiered on. Not anymore. Now he wants to be knocked out, he wants to sleep and put the clock forward until the pain and distress start to ease again.
How sad that a child wants to sleep through even a moment of what should be the most precious days of his life.
He has become very clingy, he has always been that way but now much more than ever. I dont mind, ofcourse I dont mind, its good to feel like a have a purpose and can comfort him but at the same time I wish he could be out playing in the sunshine, rolling in the dirt and getting all scratched up, not clinging on to me and wishing the days away.

clinic

All went well this morning and we could go ahead with another full dose of the lovely vincristine. His counts were a little lower than I was hoping for but nothing peculiar thankfully.
Anc -> 1327
wbc -> 2.2 (normal 4.5 - 13)
hgb -> 12.6(normal 12 - 16)
plt -> 245 (normal 150 - 450)
His biliruben was 1.2 (normal 0.2 - 1.2). Very pleased with this result as the bili was what was screwing up the dosage for so long. Nice to see it at a decent level for a change.
Scott also had IV methotrexate and his monthly breathing treatment, pentadamine. This was his second dose of pentadamine and Scott found it much harder to do than last month, he was coughing and spluttering, his eyes were watering, he was white as a ghost. We had a bucket handy but fortunately he didnt need it and managed to get through the session. He felt very ill for a while and still has a dry throat and cough but is looking a lot better than he did a few hours ago. As you can see from my awesomely proffesional home movie ,Springsteen cheered him up with a bit of a wash after we got back from the hospital.
We also start the steroids again today and the 6mp every night.
Well, well, gotta go, "time for tea", said Zebedee.
Oh and before I go, please look in on Mathew and wish him well. I was very pleased to be able to see him for 10 minutes this morning before he had surgery. Considering what the poor little guy has been through lately he looked very well and had a big smile on his face. He's a bobby dazzler for sure!!
http://www.caringbridge.org/visit/mathewjgliddon

Easy like Sunday morning

Scott has been almost like his silly old self this weekend, it's been wonderful. Lots of giggling and singing and talking about grits and sweet potato pie in his southern accent, much to David's annoyance!!

We havent really done anything of note, just kicked back at home. Derry has been plugged in to Garys Mod or Turok, David into Warhawk and Scott is going through a Crash Bandicoot faze. I am surrounded by gamer nerds or 'pwn stars' as it is termed nowadays. I guess I am just as bad at being 'plugged in' but with me it is trawling through the internet researching anything leukemia related, learning about new drugs, reading blogs, generally scaring the living daylights out of myself.

We really do need to get off our butts, give ourselves a shake and enjoy the sunshine and good days but I think we have all come down with a touch of agoraphobia. Cant go out too many germs. Cant go out Scott might puke. Cant go out the sun is trying to kill us. Cant go out clowns will eat me!

Och well, we may have become the Worlds most boring and anti social family and yes, its true, my boys may grow up and invest in trench coats and a stock pile of grenades but at least Scott wont catch a fever!!!!! Hopefully.

And here is the man himself, enjoying a nice afternoon being groomed by the cat ....

And before you ask, no, Springsteen does NOT have germs!

Gonna hunt me down another coon cat!!

Scotts labs all looked good this morning and he was able to get his weekly IV methotrexate. I get so anxious, we all do, that hour or so waiting for those blood tests to come back is always a worrying time. Anyway today all was well with an anc of 1500, great considering he is at his nadir. Next week is the start of another round with vincristine, methotrexate and more of those horrible steroids, he will also have another pentadamine breathing treatment.

I also tracked down our social worker to ask her about a trip Scott missed out on last year and which he is desperate to attend this year. It is run by a group called Sunshine Kids. Last year they went skiing to Steamboat Springs in Colorado, the year before was Hawaii. It is for the children only, no parents allowed, and Scott is really keen to get away from us and all our nagging for a week and just have some FUN!! I was told that as Scott was promised last year and couldnt go that he was definately in line for being chosen this year, as long as he is well enough. I was also told about two other fun camps. Boggy Creek in Florida, again for the patient only and Sunshine Camp in MAINE!!!!!!! Maine! Wow! I've always wanted to go to Maine and this camp (hurray) is for the whole family and looks fantastic. They even have a marina named after Stephen King!!

"Late last night and the night before,
Tommyknockers, Tommyknockers, knocking at the door.
I want to go out, don't know if I can,
'Cause I'm so afraid of the Tommyknocker man."

Well thats it for now.

Over and out.

Thinking of Mathew

Little Mathew is on a ventilator in intensive care after suffering a sub-arachnoid bleed. I believe that a shunt was placed to drain blood from the brain but it clotted and had to be replaced. He is now responsive though which is a very good thing but please keep those good vibes and thoughts flowing to Mathew and his family.
The Gliddons were among the first people we met after Scotty's diagnosis and were so kind and compassionate. Such a good family. I remember hoping that some day Scott would be as well as Mathew, with his pink cheeks, a head full of shiny hair and much of his treatment under his belt. How naive of me. Leukemia is a cruel and heartless bitch and can turn on its head in just a moment. For those of us in our little 'leukemia community' what has happened to Mathew scares the living daylights out of us, it only re-inforces what we already know. No peace, no rest, no end to the 'what if it comes back?' This is not the first relapse we have seen but the fierceness of it has been heartbreaking. We lost Britney only recently and can only watch as Logan, Neffy and Devon fight this monster yet again.
I believe Mathew will turn a corner soon though and get back on the road to transplant and cure. That is the other thing I have learned, yes leukemia and all its side effects can bite you hard, but damn, these kids can sure bite back!
We love you little Mathew.

A few minutes ago I read that a beautiful little boy treated at the same hospital as Scott and also with leukemia has relapsed for the second time. His name is Mathew and he is just 5 years old. He relapsed (after over 2 years of aggressive therapy) shortly before Christmas, achieved remission a couple of weeks ago, but following yesterdays bone marrow test it has been confirmed that he has once more relapsed. This means his leukemia is very resistant to chemotherapy.
Now I know that you all know my feelings on life, death and the whole cosmos 'thing' but that is neither here nor there. I know that the Gliddons would like prayers for their baby and I know that many of you reading this are Christians, so please have a word with him upstairs. Whether Mathew be cured by medicine or God, it dont matter, but Mathews family have faith so please give them some of your strength.
Mathew will need a transplant, his brother is a perfect match so that is a good start. They also have a wonderful hospital lined up. As I understand it a transplant can be done without remission being achieved although it most certainly is better if the patient is in remission. The family will have to move up to Philidelphia shortly, the process is very lengthy, I would imagine a stay of 4 - 6 months, possibly longer. This ofcourse is very expensive. Loss of income, costs of staying elsewhere and numerous other things. If anyone reading this just happens to have a pot of gold that they arent using right now then Mathew does have a fund and any donation, however small would be much appreciated.
But this post isn't about me handing around the hat. Please visit his site and show that you care. I am heartbroken for his family. They are in a very frightening place. The 'r' word is even worse than the 'c' word.
Thank you.

http://www.caringbridge.org/visit/mathewjgliddon

One year on

This time one year ago today, things we "normal" in our little humble world.

Then that evening, our whole world change in a instant. Today "marks" a year since that evening when Scott got sick after dinner, his face bruised and we took off to the urgent care clinic. What does one call such a time marker? Certainly it doesn't fall into the "celebrate" realm. It can never be forgotten. No, January 24th likely will simply remain in our heads as the worst day of our lives to date.

After the shocking state of Scott's face - bruised ear to ear basically - and feeling the lymphnodes behind his ears swell HUGE and feel like rocks, we took of to the clinic. The doc caught my eye and told me in the hall "something is really wrong with Scott's bloodwork, and he needs to get to the hospital". She first used the word "leukemia" with Stephanie, as I'd went to sit in the room with Scott, so the doc could talk to Stephanie alone. We then were off to St. Joseph's ER. I'll never forget it was raining that night. Rarely rains in this area in January, but of course the night a doc tells you a kid probably has leukemia it rains. I think we hit every red light as well. Finally we got to the ER, where we met Dr. Wynn for the first time in the ER. We got put into a room in the "normal" hospital, which Dr. Wynn wasn't happy with, but it was the only option. Getting to the room, we were all just in shock and horror I believe. I remember it being very hard for them to get an IV in Scott. I remember him crying. Stephanie crying. Scott asking if he was going to die. I remember at some point in time collapsing in a chair next to the bed and bawling my eyes out. I don't know for what specific reason.

The next day found us wandering to the day hospital for the first time. The first bone marrow aspiration. The confirmation, yep - your child has cancer. Our first admission to the pediatric oncology ward. Meeting other horrified parents. We actually met Susan, Taylor and Steve in the first couple of days. Themselves having gotten the same horrible news of Taylor's lymphoma, being admitted within hours of Scott. That Friday came with Scott having his port installed, and his first spinal tap (a horror all its own). I remember countless times that first stay when Stephanie and I would just look at each other and have no idea what was going on or what to say.

So much has happened with Scott in the last year, it is hard to look back and remember it all. One can't remember each detail, nor the feelings that came with each trial and tribulation. This very blog is a yardstick for Stephanie and I's mental state at any given time. At times I'll go back to a random month and scan through what we wrote. Lots of times, that stuff is scary. It is still scary today.

A year ago a number of folks would tell us we would find a "new normal". While there is truth in that, the "new normal" certainly doesn't equate to "not being scared to hell and back on a regular basis". The myriad of complications that can arise clog the mind with different fears about different issues. It is always something to worry about.

Scott had his high-dose hospital stays, which were miserable for him and all of us. The kid has had a stroke. What else can go wrong? Most times he's had the opportunity to do something nice, something has gotten in the way. A Labor Day trip to Disney with the American Cancer Society was derailed by his stroke. Several opportunites seem to have come on the week after his 3-week cycle starts - when his jaw, back and legs ache and allow him to walk for a few minutes before basically being so pained he just wants to lie down.

The reality, as we've come to accept, is that fear of such things will be with us from this point forward. Scott will never have a medical issue that doesn't bring the question "could his treatment have anything to do with this?" for the rest of his life.

And that, my friends, well......sucks.

Scott did have his clinic visit today. A whopping ANC above 4200. Got his IV methatrexate and got home rather early today for clinic day.

That's about all I can type right now.

4 years ago

Back home in Scotland ... was it there then?? According to recent research, yes it was, only dormant. Supposedly 1 in 100 of us are born with pre-leukemic cells in our bone marrow containing a mutated gene, caused when dna is broken and then rejoined at another point. It then takes a second mutation, probably brought on by an infection, and then thats it, you've got yourself a nice fat dose of the 'c' word.

Sorry for no updates in a while. Its been a rough week for Scott, the vincristine hit him hard and he has been in a lot of pain and distress. It has been quite a few months now since he had a full dose of this particular chemo and the full force of it has had us all a little taken aback. He has also just finished his pulse of steroids which brought on the extreme hunger and also bouts of weepiness and just sheer pissed-off-idness.
It has been an upsetting few days, for Scott obviously, but also for the rest of us, to see him so miserable and be unable to do anything other than to call Pizza Hut (yup he's been craving pizza again, pretty soon just the sight of pizza is going to make me hurl and I NEVER thought I'd be writing that!).
Anyway, I must go now, his lordship is calling.
PS. Tomorrow is clinic day, whoopedeedoo, so wish us well. Oh and its also the anniversary of Scotts diagnosis, the day our Earth fell from her axis.

Making the cut

Scott's ANC just made the cut today in the low-800's. A full load of Vincristine on the day. That's a first in some time. His methatrexate and 6mp doses for this cycle will be 80%.

It is a relief that his counts are reacting normally, especially with the delays of December. An even bigger relief since Scott was a bit coughy and sneezy for the last week. We were certain he was fighting off a bit of a bug, and that would have his counts below the 750 threshold this week - setting off another cycle of delays.

We'll take the day as "good", as it came with no new hurdles or complications.

Now I'm off to help Derry with math, even though he hates it.

"Well, hurrah with highly polished brass knobs on!"

Scott slept with me AGAIN last night, we had been watching a TAPS marathon and he was too scared to sleep on his own (wussy). They caught this "astral" (lol) voice on some fancy recorder saying 'help me' and that was it, Scott couldnt even go pee without an escort. Just as he was nodding off I whispered in my best ghostly voice "help me", he spun round, went all scary psycho and threatened to call Dr. Tebbi.

Thankfully this morning he was talking to me again so we trotted off to clinic. He had his blood drawn, it took 3 finger pricks and lots of squeezing to get enough blood out! His fingers are getting all calloused so every week it is becoming more of an ordeal. Then we waited and waited and waited and finally were whisked off to do the breathing treatment. Scott was a star and managed perfectly. What a relief. He was in tears before it started, so scared he would throw up, but he didnt, all went very well indeed.

Then we went back to clinic and were presented with beautiful blood results. Considering he is just past his nadir it was a real surprise to see an anc of over 1800!!!!! The bili was also down considerably to a respectable 1.6, only .3 above the high end of normal. Wonderful, wonderful, wonderful. The other elevated enzymes were down also, still high, but not a worry. Oh yeah, and his platelets had gone back up!!! I have been harping on for weeks about the dapsone causing his platelets to drop, but no-one listened. Maybe it was just coincidence, maybe Im just too damn smart for my own good.

Clinic was very busy today so we had to wait a little while for a bed for Scott to recieve his chemo but we had lots of friends there and everyone was having a relatively good day so there was a pretty happy vibe all round. Scott even got to hold baby Emily, she is 3 weeks old and just gorgeous with her bobble head and teeny weeny nose and teeny weeny fingers. We also found our today that the son of friends of ours has achieved remission again. He relapsed shortly before Christmas and the last few weeks have been horrific for him with very, very high doses of chemo and infections. But Mathew kicked cancers butt, yet again :) , and the stage is now set for him to move forward towards transplant. It is a tough road to travel but Mathew will be treated at one of the best transplant centres in the world, his baby brother is a perfect match and someday soon Mathew will get his health and his childhood back. We wish them well.

Thanks for listening.

Over and out.

Silly RAF

And his ghost may be heard as you pass by that billabong...

Thursday's roll around too quick. Back again tomorrow, hopefully Scotts counts will be over 750 and we can go ahead with IV methotrexate. After the worry over Christmas I dont think I can handle seeing low counts again. Also hoping to see a lowered bili count. His eyes look a lot better, that yellow zombie look has gone and he's been knocking back plenty of vitamin C so I would imagine the bili is coming down. Last week his other liver enzymes were elevated too, dont know why and neither did the doctor, it would be nice to see them within the normal range tomorrow.

Scott will also have his first dose of the breathing treatment, Pentadamine. This is done to prevent a type of pneumonia which can be fatal. He has to spend between 15 and 30 minutes breathing in a chemical which will protect his lungs. According to some other children we know who have Pentadamine it tastes foul and Scott is very nervous. Me too. He has such a sensitive gag reflex and Im anticipating puke.

On the whole he has been feeling pretty good, lots of energy and eating well (for Scott and pigeons anyway). Last night he was a bit down and had a headache. Headaches set off sirens for parents of children with leukemia but I did good and didnt have a complete meltdown. He wanted to sleep with me so poor David got booted out - again!!! We snuggled up and I told him the story of Waltzing Matilda, a wonderful folk tale and a song I just cant get out of my head. He felt like shit, his head hurt, he was tired, but in typical Scott fashion he said how sad he felt for the poor old swagman. So much for me making him feel better. Damn I need to learn some pretty stories with happier endings.

Watch this, it will send a shiver down your spine ... its lovely...

hair

Yes yes yes, I know I should grow up and 'count my blessings', blah blah blah, and yes I am eternally grateful that we live in a day and age when children with leukemia have a good chance of survival. But damn I still hate what all those poisons have done to my baby, inside and out. Until we got hit with the cancer beam I was completely ignorant to the ravaging that chemo and radiation (and all the other meds) do to the body. It's not just the here and now, but the late and long term effects we have to worry about. When we gave our consent for Scott's treatment to begin there were literally pages and pages of side effects that these drugs could produce, some of which may not even be picked up until years down the road.
Scott has been through so much, he has been incredibly brave and I am so proud of him. And through it all he has never lost his spirit, his sense of compassion and his unique and very quick wit.
I guess as long as that damn chemo can eradicate the last of those leukemic cells, I know we can get through the rest.
But hell, I still miss that beautiful blonde hair of his.

Just wanted to wish my younger (but only by a bit) sister a Happy Birthday. She is now officially in her mid to late 30's which Im sure she is delighted about, although is probably considered a wise old sage in the backwaters and sweat lodges of Africa she has been frequenting these last few years.
Happy Birthday Lorna!! :)

Methemoglobinemia

Say that five times real fast.

Today saw the first clinic visit of the new year. Scott's counts, as expected due to steroids, were jacked up. A whopping ANC in the 4600 range. So chemo was given. All the viral panel from last week had come back and nothing nasty was found. Another bit of blood was drawn just before Scott was deaccessed, and a nurse took it away right quick like for testing.

Turns out Scott has a condition called methemaglobinemia. You can read about it at that link. Seems the basics of the condition is an effect on red blood cells which doesn't allow them to carry oxygen, so they die. When they die, biliruben levels escalate. Also appears to be Dapsone-induced, so Scott has now been taken off Dapsone, and will start Pentamidine treatments at next weeks clinic visit. Not sure about the frequency of the treatments though. We'll ask about that on the next visit.

At least we've gotten an explanation for the elevated biliruben. This level should be back to normal range next week.

Otherwise Scott seems about "normal" for it to be a few days past the steroid pulse. He is a bit mood-swingy at times, and has trouble sleeping. At least he's not "gone a bit bitey" yet.

So that's the Scott news early in this year.