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.

Memories are old ghosts

Earlier I commented to Scott how nice it would be to bid farewell to 2007 and how it had been the absolute worst year of my life. He responded with, "no Mum, it has been your worst year of your life SO FAR".

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...

http://www.youtube.com/watch?v=PQWFuRwSP1Q

http://www.youtube.com/watch?v=1moDuSOC3ko&feature=related

What a day!! We are obviously all over the moon that Scott's anc had risen to a level where he can now restart chemo and keep on attacking those rogue leukemic cells. Huge relief also that his body recovered on its own without GCSF and more importantly to see his marrow is most definately working and no sign of relapse. His platelets are still a little on the low side which bothers me but the doctor didnt seem too concerned. No "unclassifieds" (very bad omens) were found in the bloodwork, his anc had risen well, still high monos and only a small drop in the hgb.

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.

WHEEEEEEEEE!

Just a quick note - got a message from Stephanie at clinic, Scott's counts are back up over 1300! He's okay'd to get back on his chemo regimen.

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.

"I built my dreams around you"

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.

I guess I should update. I'm not sure what to say though. Its all very confusing.
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.
Just scared.
Thank you to Steve, Susan and Taylor for your kindness and love and yeah, thanks for the prayers too. You guys are amazing.

We have been well and truly spoiled rotten over the last few days and I am so thankful for the support and love, we really need and appreciate it right now.

On Friday Scott recieved a beautiful build-a-bear puppy from Angel David and his family. What was even more touching were the photos of his daughters building/birthing the pup. Scott loves his bear very much and got all emotional that you care so much for him. Thank you Krug family!

On Saturday we were presented with a holiday gift basket from the Beacon Surginet Team at St Joseph's hospital. There was a gift card for each of us and presents for the boys. And that darn cat, Dave, who isnt ours but thinks he is, is very happy in his nice new wicker basket. So thank you very much to all who contributed.

On Sunday the boys' dreams came true. We had been invited to the Tampa Bay Lightning Christmas party but I had kept it all very hush hush, too scared to get them all excited in case Scott was sick and we couldnt go. We really shouldnt have with his anc being critical but if there was one thing that could cheer us all up, this was it!! So Sunday morning came and I told the boys we were going out to a very special and sacred place, Derry started whining and saying there was no way he was stepping foot inside a church and Scott got it into his head we were going to see The Cure!

By the time we arrived at the sacred and holy ice of the TBL the boys still didnt have a clue what was happening. Scott was still yammering on about seeing the Cure and Derry was having a crisis at the thought of being surrounded by Goth's and 'Emo People'. We checked in and the lady said "you'll be sitting with Johan Holmqvist, have a great afternoon". Well you should have seen their faces, absolute bliss followed by a kind of 'OMG he'll eat us alive' look. Priceless. Even David did a double take and asked the lady to repeat what she had said. I got to say a HUGE thank you to Sharin Nelson from the Childrens Cancer Center at this point, she knew Johan was Scotts hero and she dropped a bit of a subtle hint to the Lightning Foundation to have us seated with him. Thank you Sharin, you are awesome!

Johan Holmqvist is the goalie for the team and he truly is Scotts idol. Scott had dreams, and still does, of becoming a hockey goalie and admires Johan so much. Not just for his ability but he loves his attitude too. A while back we met him, very briefly, Johan had had the flu and the Lightning had just lost pretty badly. The boys had their picture taken with him and Johan had a bit of a wild and homicidal look in his eye. The boys were thrilled and thought he was 'way cool' When I said to them later that perhaps I had upset him by we asking for a photo they were like, "oh no, goalies are always angry!" LOL.

So anyway, we go through into a beautiful room, all decorated with Christmassy things, fancy tables and lots and lots of food. There were Christmas stockings on the tables, sweeties (candy) and a gift for the mums. It was perfect.

Then Johan arrived with two big bags of gifts for the boys and two goalie sticks. The boys froze and David and I tried to hold back the tears (saps!). It was all so surreal. Top of Scott's Christmas list this year was a Holmqvist jersey, little did he know he would be recieving it from the man himself. Damn Im getting all emotional writing this. :) They were spoiled and loved every minute of it. Jerseys and hockey sticks and blankets and hats and games and calenders, Derry even got a very nice new pair of hockey gloves. And the holy grail for Scott ... Johans very own hockey stick!!!!!!!!!!!!

We had a simply perfect afternoon. We talked about Sweden and Scotland and hockey and Johan made us all laugh talking about what goes through his head when he is playing. Scott was in heaven, Derry too although he was still in complete shock and absolutely gobsmacked. I hope Johan wont mind me saying he wasnt scary at all (off-ice at least), just a kind, caring and very funny man. I know I will never ever be able to thank him enough for his kindness and I know that none of us will ever forget our wonderful day. It was just amazing.

Today Scott has been wrapped in his blanket playing Smackdown versus Raw 2008, he must have told me a dozen times "my new best friend Johan gave me this game!!". Then when Derry came home from school the first thing he did was drool over his new gloves. How on Earth can Santa compete with a wild and windswept crazy hockey player??!

One final thank you. To Angel Laura. The postie arrived today with a big ole box which Laura had filled with gifts and poems to represent the 12 days of Christmas. What a wonderful and very clever surprise and Scott, again, was quite overwhelmed. Thank you so much.

We really have been spoiled these last 4 days. But I want you to know that we are so thankful to you all, each of these wonderful things has really and truly helped bring a smile to all of our faces. We are all grieving my dad and worried sick about what Thursday's bloodtests will show but the kindness and love has really helped us through what could have been a very depressing weekend.

Thank you all.

I shall leave you with a beautiful video that my very clever friend Anissa made, Scotty and I are now famous and are on youtube. Eeeeeeeeeeee! Cool huh! I am the wretched looking skank in the orange top. A picture that was supposedly deleted! Aha yeah right, sure dont look very deleted to me! LOL. Beside me is the word 'committed', hahahahaha, it won't be long, Bedlam is calling!

http://www.youtube.com/watch?v=I9n2imsHihs

Oh and one last thing, Vinnie Le Cavalier's bottom :) ..........

Scotts anc this morning was a whoppingly crap 130. The horror of this week has reached a point where I now find myself laughing.

It seems, from preliminary findings, that my dad died from a heart attack brought on by diabetes. Tomorrow he will be cremated in Cappoquin, County Waterford, without me there to bid farewell. Four Scottish thistles will be placed on his coffin from our family in remembrance of better days amongst the heather.

The doctors still seem optimistic that Scotts counts will bounce back. All we can do is lean on their wisdom and hope they are right. He has one more week of grace and if no improvement is seen by next Thursday a bone marrow aspiration will be done. With such a low anc he is at critical risk of infection so he will be drinking and bathing in Clorox over the coming days. :)

My stomach feels like a blender going full throttle and my head is pounding. I am smoking again and cursing like a wizened old dock worker. My heart is broken. Yuppers, full scale pity party going on in our house for sure.

And we'll all go together

And pick wild mountain thyme

All around the blooming heather

Would ye go, Daddy would you go?