The Journey So Far..
Thursday July 22, 2004
I received a phone call from Jesse's school, Elanora State School, at 12.30pm asking me to collect him as they believed he had the mumps. Wow, the mumps! How awful. I had decided with Tim not to immunise the children with the MMR vaccine due to the high levels of autism and seizures etc. Now I may have made a decision that has affected my childs sterility. I drove through a red light on the way to pick him up from school. I think that was the first time. I had an appointment with the doctor anyway so I asked him to confirm that this was indeed the mumps. He couldn't. He believed Jess had a reactive gland and prescribed amoxil.
Sunday July 25, 2004
Jess has a fantastic day. Today is the party for his ninth birthday and all his great mates are there. His cousins, uncles, aunts and all his nearest and dearest celebrate with him. Problem is, the lump has grown and quite fast, even though he is on antibiotics. We decide that day that something more is required and make an appointment with the doctor for the morning.
Monday July 26, 2004
The doctor takes one look and decides an ultrasound of the site is warranted and would like to see us again in a couple of hours with the scan in hand. The report from the ultrasound says to look to pathology for possible lymphoma. I lose it. Everybody knows about Delta Goodrem, and what lymphoma is. Cancer. I rang mum and she said to bring him straight up to the Royal Childrens Hospital in Brisbane.
Tues/Wed 27/28 July 2004
Spending hours in the childrens accident and emergency department, with some registrars wanting to operate then and there, and others wanting to wait. We were going out of our minds, thinking this thing may burst at any moment! Funnily enough though, everyone Jess saw called in their superior! Nobody could quite fathom the fact that this lump had been there for less than a week, at the size it was! We were eventually put on to a surgeon who believed it was just a virus and that the lump would go down just as quickly as it popped up! Now for all you parents out there, you know when something more is going on, so we dug in our heels and probably out of sheer exasperation he called for the paediatric oncologist to come down and reassure the neurotic parents. He couldn't do that and booked us in again in two days to have another look.
Friday July 30, 2004
Lump still growing and a biopsy is arranged for Monday. YAY!!!
Monday August 2, 2004
Jesse had surgery today. They took 2 or 3 of the larger lymph nodes out to biopsy. He had the gas to put him to sleep and hated it. His footy mate Reid told him that the gas was GROSS! Nevertheless Jess sailed through and started eating pretty much straight away! He had plenty of things to keep him busy, such as balloon kits, joke books, etc. When the surgeon came around to see him, Jess had a fever and was still losing a little blood from the wound drain so they decided to admit him for the night.
Tues August 3, 2004
Still here...
Wednesday August 4, 2004
Still in hospital. Social worker came around today and wanted to know if we had accommodation. Something is going on. Then somebody else came around to find out if we needed accommodation and we said, "we haven't been told anything, how do we know if we are going to need accommodation?" We could guess that something pretty big was about to hit the fan! Doctor Tim Hassall, the paediatric oncologist Jess saw last week stopped by and asked if he could speak to us. We left Jess in the care of his sister Brooke and walked the green mile. You just know. Your guts sink and you feel as though you are on death row. Here it comes "Anaplastic Large Cell Lymphoma" a rare and unusual sub-branch of non-Hogkins lymphoma. I simultaneously wanted to vomit, faint and shit myself. Instead I just cried. Tim wasn't much better. What do you do when you are told your child has cancer?
Wednesday August 4, 2004 post diagnosis
We were allowed to take Jesse out until Friday, so we headed off to mums for a stiff drink (or several!) Jess loved being out of hospital, and had an absolute ball being surrounded by all his nearest and dearest. We explained to him that he did indeed have lymphoma (we had told him thats what the doctors thought his huge lump may be) and he was cool with that. We had not yet told him that lymphoma was actually the 'C word'. He had a great sleep that night and didn't even have a night sweat - which he had been having pretty much every night for the last couple of weeks. Night sweats are a common symptom of lymphoma, and it is recommended you buy shares in Omo or Duo or whatever is on special that week!!
Thursday August 5, 2004
Jess had a heart echo today to make sure his big heart was strong enough to handle the chemo, as he is on some pretty intense shit. His heart was as strong as an ox's and twice as big. All ready for pre-phase chemo to start Monday. Tim and I had a discussion today about what to do. Jess was booked in tomorrow for a Lumbar puncture, bone marrow testing and the placement of a central line (no more needles!!) and was allowed to come back down to the Coast on Saturday to run through the banner for his 50th footy game, not that he was going to be either allowed to play nor in any shape to! Problem was that the news was out, and someone was going to blurt out 'Cancer' at some stage. Telling Jess what lymphoma is, was the hardest thing we, as parents, have had to do. He just stared at us with his big brown eyes starting to mist up and said: "so you're telling me I have Cancer?" We told him he was strong and he would fight it but he asked "What if I don't make it?" We told him he would, but he ended up screaming at us, "But what if I don't?" All I could say was "I don't know, Jess.." Tim couldn't say anything. We hadn't really thought that far and still haven't. After that he rallied his inner strength and was smiling at the world again.
Friday August 6, 2004
Jess had his 'big op' today, Bone marrow testing, lumbar puncture, and insertion of the central line. The first two were to help with the staging of the disease, to make sure the cancer had not spread to the bones and moreimportantly his spine and brain, which this Anaplastic Large Cell Lymphoma (ALCL) tends to do. It is a high-grade lymphoma and very aggressive. The central line is a piece of equipment planted into the chest to cut down on the need for needles. His Chemo is injected and infused through it, his blood is taken through it and any other, such as blood transusions, platelet transfusions, fluids, iv antibiotics etc etc. He came out of theatre all doped up and surgeon Roy came around to let us know that he had injected local anaesthetic all the way through him, to take all the pain away for a while at least. Bone scan at 3pm which once again was to make sure there were no lesions anywhere through the bones. While in there, they inserted a radioactive isotope into his body for a Gallium X-ray which was to be done monday. The Gallium shows up the entire lymph system to find any more clusters which are either suspect or definately cancerous. We told him he would glow in the dark like Mr Burns from the Simpsons! He told us to shut up!!
Saturday August 7, 2004
THE BIG DAY HAS ARRIVED!!! Jess was still buggered after his very eventful day yesterday and slept all the way from Brissie to the Coast. He was in quite a bit of pain and we had him wedged in the car carefully, surrounded by pillows and wheat packs etc. When we came close to arriving, the emotions from the last week came pouring out, and it felt really strange to be back in our stomping ground. Felt as if it had been years since we had been there. I didn't think we were going to be able to wake Jess up! It was wonderful to see everybody again, and thank the stars, we were all just as weepy as each other! Wonderful Richard Hulls, who we later found out is another cancer survivor, organised a quick whip around, and presented us with around five hundred dollars and a card signed by a large number of people around the ground. Not only people from our club either, which was fantastic. Jess couldn't wipe the smile off his face all day! His team mates also presented him with an unreal card made from Brissie Lions pictures and a Game Boy Advance SP (hope I got that right, or I will be shot!) and a game to go with it! The generosity was completely overwhelming. Jess was made captain for the day and won the toss! (See pictures of the day in the photo section) The boys went on to win the game (not that we are scoring, Eunice!) We were all feeling rather blue when three o'clock steamrolled in and we had to get back to hospital in preparation for chemo tomorrow. Yes Dr Tim had brought it forward and wanted to waste no time in beginning treatment. Many hugs, kisses and tears later we were organised in the car and off to Brissie.
Sunday August 8, 2004
Poor Jess didn't have much sleep last night as he was being filled with fluids all night and as they say, what goes in, must come out! The prephase chemo is a mild dose - just one dose injected per day. Dr Tim was fairly confident that by doing it this way, the lump would melt down rather quickly. When the tumour melts away very quickly like they hoped it was going to, and as it passes through the body, the dead cancer cells can bank up in the kidneys as uric acid crystals, so Jess had to be given a drug to stop that from happening, and the doctor assured us that, "since we have been using this drug over the last year or so, not one child has gone into renal failure!" WHAAAT??!! Just another little something to keep us freaking out! Then the moment arrived. Anything CYTOTOXIC (chemo stuff) is coloured purple - The gowns the nurses wear, the container the used drug paraphernalia goes into, the gloves etc. All of it is purple. We now hate the colour purple! The first chemo injected into the central line is a real wake up call. You're there, you are actually dealing with cancer, it is all real and happening. I had to leave the room and cry buckets. It is the most horrible feeling, knowing your child is being given poison to kill off this entity you can't even see, but know is there. The not knowing how he is going to handle it. The not knowing whether it is going to work or not.
Monday August 9, 2004
The hospital photographer comes around today! They are documenting this and a photoshoot is a necessary part. He doesn't smile for the camera though!
Tuesday August 10, 2004
So far, so good. Jess's spirits are up, he hasn't felt too sick, all is good. The lump actually appears to be receding! Jess has a lot more movement in his neck. We are not dreaming! I sent a message around to all the girls saying "Jess is peeing cancer cells out like you wouldn't believe! We are all ecstatic. Then we are told Jess has to have another lumbar puncture. They are also going to inject Chemo directly into his spine as a kind of pre-emptive strike. Just incase the cancer is still spreading and decides to head up the spine to the brain. Poor bloody kid, it is the gas again. No choices this time because they do this procedure in outpatients, and they don't have the resources that big theatre does. All up it only takes about fifteen minutes and jess is in recovery. When we see him, he hasn't woken yet and has a bloody thing in his mouth. The nurse said it is unusual, but he had a bit of trouble breathing in there, and that he will gag the thing out when he wakes. Bloody hell I still can't remember what the thing is called. He was a little bit sore when he was wheeled back in to his room, but nothing like the bone marrow thank goodness!
Thursday August 12, 2004
Day five of the prephase chemo, and we are getting ready to be released. We have been given his pharmacy script which I took down to be filled. Jess is really excited because he has handled everything so well and is ready to come home for a couple of weeks before cycle one starts. He just wants to catch up with his mates, go to school and live his life. As I am heading down to pick up his meds from the pharmacy, a nurse is running up behind me saying "Wait, wait" I turn around and in a rather flippant way she says "I just heard, you're not leaving today, you have to stay in, they are starting cycle one tomorrow" WHAT THE? I lost it, went and got Tim and told him. We couldn't believe it. How the hell were we going to let the poor kid down gently? Cycle one was SO different from prephase. Prephase was one injection a day for five days. Cycle one was going to be about seven different chemo drugs with three or four other drugs thrown in to help him cope with the chemo. And they want to start straight away? Can his little body cope with ALL that? We are told that his cancer is aggressive and so is the treatment. Looking on all the drug info sheets we have been given, we find that out of the eight drugs he will be given, four can cause a new cancer or leukemia, he will almost certainly become sterile, cataracts are in there too, abnormal heart rhythm and the list goes on..oh, I forgot the hair thing. Yes it will go too, but it will come back. Pretty minor considering everything else. He is taken to outpatients for another heart echo, and whilst in there I asked the doctor "Does the echo get done on a weekly basis?" to which he replied "No, usually once a month, he must be on some pretty intensive stuff." Fabulous.
Friday August 13, 2004
Freaky friday. The horror show begins. It all starts with another lumbar puncture. This time down in big theatre, which is great because yu all know by now, he HATES THE GAS!!! Chemo is injected into the spine again as another pre-emptive - a war message to the cancer! He gets through again like the little trouper that he is. It seems like every five minutes the purple people eaters are back with more chemo. A never ending daze of purple haze. Jess is on a couple of good anti nausea drugs, which they actually start before the chemo starts and they keep on top of through out the duration and for a couple of days after, as it takes about 48 hours for the chemo to leave the body after the last course.
Saturday August 14, 2004
Uncle Sam and Aunty Nik come for a visit and stay five hours. Even then, Jess begs Uncle Sam not to go! Nik has brought Jess some beautiful fruit salad which he devoured, some soup and has told him she will make him more. By now, the hospital food has become so bland to Jess that he is refusing to eat it! His tastes are also changing - doesn't want anymore red cordial or coco pops! That has to be a good thing. Wants wholemeal bread again instead of white. All good.
Sunday August 15, 2004
Jess is still coping rather well, but gradually has started to feel sick later in the day. He doesn't want to complain, and we have to tell him to tell the nurses he feels sick. They are on the ball with his meds though and not much more can be done, we think. Then we discover Deep Spring lemon, lime and orange mineral water! He sips on this and it helps to settle his tummy. I wonder whether he will drink it once all his chemo is finished.
Monday August 16, 2004
Day four. He eats and eats in the mornings, but once again flags at the end of the day. Mama and Papa surprised him with a visit today, as did his brother Matt, who had come from uni. Jess and Matt played together on a laptop which the hospital primary school teacher had brought up. Tim messaged through "How is the mini Cooper going?" to which I replied, "playing with an earlier model Cooper!" Haha. Uncle Sam comes straight from work to the hospital and the pair of them start planning a huge trip they are ging to take when Jess is well. They pick ten places, and as both are afraid to fly, most of these places are within Australia so the boys can drive! Places like: Perth (to meet Dr John Holt and shake his hand!), Melbourne, to go to the footy! Mildura (apparently Aka was born there??) Ayers Rock, Tasmania (just because it is beautiful), Kakadu, but the first thing they are going to do is get on a houseboat and sail down the Tweed river! Sam is brilliant, staying with Jess and taking his mind off feeling sick, until Jess finally starts to close his eyes.
Tues/Wed 17/18 August 2004
More of the same, purple people eaters, more chemo...Nik sends gourmet food in! A beautiful casserole. Jess tucks in with gusto!
Thursday August 19, 2004
1am...LAST CHEMO INFUSION FOR THIS ROUND!! Big (quiet) cheer! Later in the day, we are allowed to leave. Each time chemo finishes, Jess has a 'supershot' PEG GSF which kickstarts his good cells to start growing again. It costs $2000.00 per shot! Unfortunately you have to wait 24 hours after last chemo before you can have the shot, so we collect it from the pharmacy and head to aunty Sar's for the night. Yippee! Sarah can't believe she has 2000 bucks sitting in her fridge - not in the form we'd all like it though!
Friday August 20, 2004
Outpatients appointment to have the supershot injected is for 11am. Shot finally injected at 12.05pm! Homeward bound! 10 straight days of chemo later, we are home.
Monday August 23, 2004
Jess goes back to school for the morning. His class, 4SF, under the guidance of two class mums - Mrs Rochester and Mrs Kearney, are making 1000 cranes for Jesse. According to Japanese custom, if you make 1000 cranes you are granted a wish. The class is going to wish for Jesse to get better! What an effort! We were able to bring 300 cranes home and they look superb. We are very impressed with the skill the gang(sters) have! (I love that one and am still laughing, Mrs Farrell!) Jess did some work on his flat Matt project and soon it was time to go. He was exhausted and fell asleep at ten to six - totally missing dinner!
Tuesday August 24, 2004
Jess has last nights dinner for breakfast! He had a great sleep and is raring to go back to school. Today was assembly and Mr Kelly the principal spoke about Jess and his fellow Banksia mate Ben. Jess stood up on parade and Mr Kelly cracked some pretty funny jokes about which teachers would look good with no hair and which ones wouldn't! Mr Kelly didn't think he would look very good with no hair! I think we agree - he probably wouldn't!! Haha just joking Mr Kelly.
Wednesday 25 August 2004
I'm back at the Royal Children's in Brisbane. It was only supposed to be an outpatients visit but I needed some extra blood and antibiotics. Hopefully I'll be out of hospital tomorrow afternoon!
Friday 27 August 2004
I'm out of hospital!!! My oncologist is happy with my blood levels. Surgeons are considering the fate of my ingrown toenail. It was an infection in the big toe of my left foot which turned an outpatients visit into a 3 day hospital stay.
Sunday 29 August 2004
Jesse has a great day catching up with his friends. We have a BBQ lunch with some of his footy team mates and he can't get enough of kicking the footy around and playing cricket. We then go and visit some close friends Cliff and Phillip. There has however been a worrying development, the lymph nodes in Jesse's armpits are swelling. There is now no hollow in the arm pit and the swelling is causing dimpling, ridges are clearly visible. We are concerned that the cancer continues to spread despite the intensive chemo. We will be contacting Jesse's oncologist and seeking answers tomorrow.
Tuesday August 31, 2004
4SF HAVE FINISHED 1000 CRANES!!! We took them home today. Thank you class, Mrs Farrell and big thanks to Mrs Rochester and Mrs Kearney. You are all fantastic. Some of these cranes are so TINY I just cannot imagine how you were able to make them! Thank you so much and may our wish come true.
Wednesday September 1, 2004
We went to Brisbane for a check up today, as well as meeting with the surgeon, Dr Roy about the festy toe! Dr Roy decided that the festy toe will have to go! Because of Jess's condition, each time the toe flares up with infection, it can potentially land him in the ICU and we have made it a mission to avoid that place for the duration. So far, so good. I can't remember if I have said this before or not, but once a person commences chemotherapy, their entire immune system is wiped - including any immunisations they have had, which means that Jess can get the chicken pox again! (all of you who remember the first dose remember how good it was!!!) Any infection within his body has the potential to be devastating. Therefor, Monday morning he has a quick op to fix up the toe!! I am in quite a bit of trouble, though and he hates me for signing the consent form! Dr Tim was happy with his blood test results and didn't seem overly concerned with the nodes in the armpit either, so while he is not concerned, we will try to stop stressing!!. He wants to be paged after the op to check out how much was done with the toe so he can figure out chemo doses. Chemo will start again - round 2 - on Tuesday Sept 14. YAY!!! Jess can go to presentation night for footy!! Thank you again to everybody for writing in to Jess - he springs out of bed in the morning to check his website and email!! and he continually bumps Tim off the computer during the day to check and see if he has new messages and how many hits the site has had! He is slowly responding back to you all! But he is so grateful and has enjoyed all your messages of support.
Friday 3 September 2004
Jesse is doing great! He is in great spirits and continuously cracking us up with his impromptu concerts. His hair is falling out with a vengence and we are all under threat of developing 'fur balls'. LOL! He spent almost a full day at school today - flying to Italy and eating pizza and spaghetti along the way.
Sunday 5 September 2004
Went and watched the PBC Lions play in the finals at our home ground. Jesse was made 'guest of honour' for the Seniors match and was invited into the rooms for the pre-match team meeting. Both the Reserves and Seniors won easily and Jesse had a great day.
Monday 6 September 2004
Jesse had his ingrown toe nail removed today. The procedure went well and the surgeon informed us that the entire nail had been removed to give it a better chance at a fresh start. Jesse now has to get around on crutches for a while - oh yay! Dr Roy told him he should rest it and have it elevated as much as possible, you try telling a kid to lie down with his foot up when there is a pair of crutches there just begging to be used ;o)
Thursday September 9, 2004
WOW!! What a day Jess had! At 1pm, Jesse met his hero, Richard Hadley of the Brisbane Lions.
He was invited to the Gabba (or Gabbatoir as Jess likes to call it!) for a tour, hosted
by Richard. Lethal Leigh (or God, as mum likes to call him!) Matthews came barrelling
out full of questions: Who do we have here? What number are you wearing etc. Leigh shook
Jess's hand and then Tim Notting came out from physio and met Jess. We were shown around
the rooms - weights room, media room, meeting room and players dressing room. Brooke was
thrilled to be able to touch Simon Blacks footy boots and took great delight in filming
the dirty washing basket!! Aunty Nik had bought Jess a prized jersey with the number 14 on it,
which Richard signed for him, as well as organising a 2004 team poster which he signed as
well! Amongst the photos taken was a beauty of Jess and Richard, which we printed
out this morning, so that when sleeping beauty finally woke after his big night,
the pic of him and Richard was the first thing he saw! There are more pics from today
in the NEW pic folder 'Jesse meets Richard'. Without gushing tooo much, Richard Hadley
is one of the most wonderful people we have ever met. He was totally at ease with Jess,
and Jess with him! Jess even wandered around with nothing
on his head, which is pretty unusual unless he is around family and close friends -
he gets a bit embarrassed about his head! Thank you to Richard and the mighty Brisbane
Lions for giving Jesse such a wonderful time, and GOOD LUCK FOR THE FINALS!!
Later that night we overheard Jess asking Brooke 'if it was the best day of her life too'!
Friday September 10, 2004
Presentation Night!! Yes we got there! (we were supposed to be in hospital for chemo
this week, but due to the toe it was put back). Aunty Sar, Troy, Uncle Sam and Nik
all came down to share the night. Tim helped crutch-boy with his trophy and certificates -
two certificates for reaching the 50 game milestone. One from PBC and the other from AFL Gold
Coast Juniors. Pretty cool! It was great for all the kids to catch up with each other again,
and the parents too!! Check out photos from the night in the 'footy!!' photos section.
There are plenty more new pics in the files too - including some older ones we found of
Jess in preschool - with his head covered in Lions caps!! We are back in hospital
this week for cycle two of the chemo - only four more to go after this!!! Yippee!!
Thank you very much from all of us, but especially Jess for all the messages and emails -
it really does keep his spirits up.
Thursday September16, 2004
Jesse started his second round of chemo on Tuesday the 14th and is holding up well. This round of drugs is slightly different to his first round and Jesse will be getting a new chemo drug tomorrow and Saturday, we'll just have to wait and see how he handles it. Jesse got a visit from his best friend Jack from school today and had a wonderful time. Richard Hadley also came to visit Jesse today and spent an hour talking to Jesse and Amanda. What a blow out, two friends that Jesse loves, coming to see him on the same day! Full details of the week will be posted on the history page once we are back home. Once again, Amanda and I would like to thank everyone for their messages and emails. They mean a lot to all of us and really keep Jesse's spirits up. He is always so excited to read his guestbook and emails and will get around to responding to everyone.
Saturday September 18, 2004
Jesse has completed his second full round of chemo and was discharged from hospital today. Once again, Jesse came through the treatment with flying colours. His oncologist has ordered scans for the 6th of October, so we will be able to see how successful the treatments have been to date. Dr Tim has noted that "Jesse's clinical response to the treatment has been very good."!!! Jesse has an appointment with his surgeon on Monday morning for a dressing change on his toe then it's back home. Full details will be posted to the history page on our return to the Coast.
Tuesday 21 September 2004, Cycle 3, 14 September - 18 September, 2004
This cycle was a little bit different. Jess was very weepy and off his food a fair bit.
We were in 'the cube' too which has four beds in it. There is always going to be at least
one vomiter!!! That may have been another reason for Jess being off his food! YUK! It is so
much nicer to be in the other rooms which are either single or have only two beds - there
is a little more privacy. He had a change of drug in this cycle and was on Adriamycin,
which is red and makes your pee turn pink!! Haha - he was pretty impressed with himself
over that one, although the first one gave me a heart attack. I was expecting it but when
he woke in the morning and did a pink pee I freaked out! Through half opened and blurry
eyes, I took the bottle to the nurse and said 'I know we are supposed to have this happen, but he hasn't even had the chemo yet.' She said 'yes he did, I put it through as a push at 5am!' THANK HEAVENS! I thought something terribly wrong was going on in his body! What a dill. It is good to be able to laugh at yourself...Jess was on phase B this cycle which we have called the cycle of many colours - he has a 24 hour infusion of Methatrexate which is bright yellow, as well as the Adriamycin which is bright red. Phase A - next cycle isn't nearly so colourful. Only the 24hr yellow, and the rest is clear. Boring! He had a visit to Tweed hospital today to meet the nurses and doctors, have blood done and line care as well. God what a tiny ward! It is only a day unit, but everyone is crammed in together - there is no paediatric unit. We have decided to donate some of our old kids books, crayons, pencils and some paper to the ward because as there are only two kids who go in at the moment, there is really nothing for them or their siblings to do while they wait, which can be hours sometimes. So now we are back home - to tackle the unpacking, washing, and all that other fun stuff! Jess is tearing around the place today, he hasn't stopped eating since we got home. His beloved LIONS are through to the Grand Final!!! So he is pretty excited about that and trying to wish the week away until Saturday! All I can
say is I HOPE THEY WIN because Jess hasn't really known failure with these boys
(unlike us old farts who remember the Bad News Bears!) and I don't think he would
cope if they lost!! Ahh well...hopefully Port will crumble under the pressure.
Thank you again all for your messages to Jess, he has started getting back to you
and will continue to do so, and GO THE GREATEST TEAM OF ALL TIME!!! I want to hear
you all cheering on Saturday!! We have also created a new album on the photos page
that contains pictures taken between September 14 and 18. Also congratulations to the
PBC Lions Reserves for their Grand Final win over Wilston Grange on the weekend. Hope
you had a good Mad Monday!
Saturday 25 September 2004, GRAND FINAL DAY!!
Photos
Top left - Before the big game.
Top right - The after party
Left - The end!
Well, we had Aunty Sam over, and nervously awaited the big game.
We missed most of the pre-match entertainment because we had been led
to believe Austar was showing the GF live and our reception out here is pretty
lousy! Anyway, we finally figured out that we would have to put up with the
lousy reception and away they went! After a very tense couple of hours, it was
pretty obvious it wasn't to be our day! Never mind - it'll be a fairly long
time before another team is as good as ours to hold the flag for 3 years in a row!!
There were a few fingernails bitten down to the quick, and a couple of tears from the lad,
but he soon got over that! We partied on - karaoke, singing our guts out!
I think we need another couple of microphones, because whoever had it wouldn't let it go!!
Jess and I crashed about 11.30, but the others continued on til whenever..went down to
the surfclub at Palmy for brekky and surprised the staff at how happy we were!
We just said - look, we have been reigning premiers for three years -
you can't ask for much more than that! They agreed. Our team are the best and
still 'The Pride of Brisbane Town' - don't be too disappointed guys, you have done
us all proud for a long time and will continue to do so.
You are still the "Greatest team of the modern era!!"
Wednesday 29 September 2004, JESSE GOES FISHIN'
Photos
Left - Jesse drives the boat!!!.
Right - They're biting!!
Well the day finally arrived! We wanted to ensure that Jesse's blood levels were in good shape
before embarking on a fishing trip. Jesse has come through his last round of chemo really well
and his blood work has been strong. Jess was so excited, his fishing trip up the Tweed river
was finally here! Once the boat was in the water and we were all on board, Colin turned to
Jess and asked if he wanted to drive the boat. Well, Jesse's jaw dropped as he asked, "Are you
serious? I can really drive the boat?", he didn't need to be asked twice! Jesse drove us everywhere.
Our first stop was Cobaki Lakes, it was a pretty blowy day but Colin picked out a sheltered
anchorage. I caught the first fish of the day, a 7cm bream, it must have been just longer than
the worm I had on my hook. Colin, not to be out done, caught even a smaller mullet ;o).
Colin said we must have parked over the nursery section so we moved onto Teranora, no bites
here but it was fun and relaxing just throwing the line in. Jesse didn't catch a fish, but
the fact that he got to drive the boat all morning more than made up for it. Jesse and I would like to thank Colin
once again for everything he has done towards making some of Jesse's dreams come true :o)
Wednesday 6 October 2004, A SMALL STEP IN THE RIGHT DIRECTION!
After a sleepless night for us, we drove Jess to Brisbane for his first CT scan since diagnosis day. This scan was to let us see whether or not treatment is actually working. Jess doesn't like the taste of the imaging/contrast drink so he decided to block his nose while he drank it down. It worked! He didn't taste it. Off he went to the scan room...When we took Jesses chart back to Banksia outpatients, I made an appointment to see Dr Tim that afternoon, as we couldn't wait for the results, what ever they were going to be. Finally 3pm came around, and we saw Ben, Kerry and Carol there! So we sat chatting while the boys had a ball and stirred up the other kids there - I swear there has never been so much noise in outpatients! These kids are all supposed to be sick, but to see them running, laughing and carrying on was great. Then we were called in. I held my breath....Dr Tim called up the report and while he was scanning through he read out bits and pieces to us. Then he turned to us and said "while we haven't run the full battery of tests, we could pretty much say, that you are in a remission!!!" The largest node Jess has on that primary site is only 6mm! The other sites, one on the other side of the neck and the other down near the collar bone have all but disappeared! There is one suspect node in his chest, but the Doc thought it looked ok. Well, we are back for more chemo on Tuesday, and they will CT scan Jess again after the next 2 cycles. Then after the last two (Dec & Jan) provided everything still looks ok, Jess will be put back through all the tests they did to diagnose. Hopefully then, they will confirm that Jess will indeed be in remission! We want to thank EVERYBODY who has helped Jess through this, so far. Your support has been incredible and we hope you are all are celebrating with us. This is a small step in the right direction!
Wednesday 20 October 2004, Cycle 4, October 12 - 17, 2004
What a shocker this round was! Jess just didn't handle it at all. One of the nurses said that chemo can be accummulative, therefore it can get worse as it goes along. Right from the start, Jess got very upset. Tim had to be back at home for day two, three and part of day four, and Jess pined for him. We ended up having to have Jess sedated for a few days and the doctors said he may have to be sedated again for future cycles. Thank goodness there are only three more to go! Poor kid. On the up side, Jess met the Virgin crew - Aunty Niks workmates Gavin and Ami-Lea!! He had been emailing them since the start and was finally able to meet them in person. They brought in a Virgin plane for Jess and we got some great photos. Ben came in (fully cut sick mate brudder!!) hahaha. Kerry and I just cracked ourselves up over the kids and their new lingo! Ben was supposed to be in with us, but as he wouldn't be having chemo for a couple of months after this cycle, they decided to wait another week because the doctors don't want too long a gap between chemos for him. Bennys big leg operation is on November 25 at this stage, and you can check him out on www.pbjtech.com/benny. On another bright note, Jess did pick up very quickly after this round and is going back to school today! He is also going to the Indy on Friday with some of the other kids from Banksia ward. Ford Racing Team is puting on the day for them, so they get to watch all the practise races from the comfort of a fourth floor balcony at the ANA hotel!!! Lucky ducks. Thank you everyone for all your support, and wait for Jesses story (he is writing it and it is a crackup!) to be posted soon. Stay tuned!
Friday 22 October 2004, INDY!! - CHECK OUT THE PICS!
What an experience! Jesse and I arrived at the ANA hotel at around 8.45am and were ushered up to the Ford Racing Team's corporate box shortly after. The corporate box was located off the ANA's main ballroom and there was plenty of room and shade for all. What a fantastic gesture from Ford Racing, opening up their corporate box facilities to the children from RCH for the day. Jesse and I both received a sample bag that contained lots of goodies including a Ford cap, flag and water bottle. Along with our corporate passes were we also given general admission tickets and Jesse spent the first couple of hours splitting his time between the balcony and trackside. Jesse was so excited, he was bouncing up and down like a jack rabbit as he spoke to his mum on the phone to fill her in on all the action. Lunch was served in the ballroom at 12 noon. What a spread! Jesse had a great feed, going back 4 times to fill up on king prawns, moreton bay bug, roast beef and salad. Ford also arranged a balloon man to entertain the children as the day went on and their interest in the on track activities waned. We ended the day with a walk up to the pits, on the way back to the ANA Jesse copped an eye full of something more than he expected and truely witnessed the bigger picture of Indy culture ;) Once again, we would like to thank Ford Racing and the Working Wonders Foundation for organising a wonderful day out!
Wednesday 27 October 2004
Had to go to Tweed Hospital today for a blood and platelet transfusion. I look like I have gone 30 rounds with Mohummad Ali! Big blue bruises all over me! Plus petichiae (or however you spell those things!!!!!) I have had fevers for a couple of days, but they can't find out why. My blood results are all over the place - things that are supposed to be up are way down, and things that are supposed to be down are WAY up!!!! Haemaglobin 75 (normal limits 115-140) Platelets 19 (150-600) - that is why I am bruising so much! White Cell count 34.4 (5.0-14.5) - way up. Neutrophils 26 (1.0-8.0) they are way up too. At the moment I should really be neutropenic, meaning that I don't have enough neutrophils, but for some reason I have PLENTY! Who knows. I will be ok soon. My letter to the paper was published yesterday. Thanking Ford Racing. We went to a Lymphoma support meeting and met other people who have lymphoma. They were all really nice.
Friday 29 October 2004
Quick update on the bloods after the transfusions - Hb up to 109 (115-140) Platelets up to 132 (150-600) WCC down to 23 (5.0-14.5) Neutrophils dropping, now 18.9 (1.0-8.0) So things are starting to level out a bit now. Yay!
Tuesday 16 November 2004 - Cycle 5, November 9 - 13
Much better time for the lad this time. We were back in the cube again, but with the babies - Phillip and Jaxon. They are gorgeous, and Jess being the baby lover, had cute little distractions. Even when he was feeling really sick, he would still flop a hand out to wave at them and make them smile. There was another little guy in there - Leo who Jess played with when he could. On a sad note, we lost another little one from Banksia. That makes four since we started in August. Just makes us all the more grateful for the fairly positive results we are getting. We are having another CT scan in a couple of weeks to check on the progress of those rotten nodes - hopefully all will be well but we will keep you posted. We are also able to delay the next cycle by a week so that Brookie can graduate and Jess can have the last week at school. Jess's class are going to the movies to see 'Polar Express' then having a picnic lunch on the beach at Coolangatta! Should be fun. Brookie graduates from Year 7 and will then be a big high school girl! Scary how fast the time goes sometimes. There will be an awards night at school which will be great fun. Checkout the pics from this round - there is a beauty of Jess and little Phillip who is just the cutest!
Thursday 18th Nov - Sat 20th Nov, 2004
Jess developed a nasty cough and fever overnight so we decided to take him to Tweed to see what the pediatrician thought. He ended up being admitted as his oxygen saturation was only 92 which is quite low. He was obviously not able to get enough air in between coughing fits. Some IV antibiotics were given to kill any infection, and ventolin was administered two hourly via a spacer. The ventolin reduced the severity of the cough and actually broke it up which was good. The doc said he has developed an asthma-like condition, which is probably only short-term and brought on by his weakened state. Jess had a ball at Tweed, playing with the '10 million dollar machine'! The nursing staff are fantastic, and couldn't do enough for him or us. He is out now, and working feverishly (no pun intended!) on his school project. Mrs Farrell is going to pass out when she sees how much he has done in just a couple of days!
Tuesday 30th November, 2004
Hi everyone, Jess had his CT scan and an ultrasound yesterday. No news to report
yet unfortunately as his Oncologist is on leave for two weeks. I did ask if another
doctor was going to review the scans, as we are worried about the chest node that came
up out of the blue. Brooke at Banksia outpatients said that yes, someone would be looking
at it, but she didn't know who or when. I have asked for a call by weeks end, however
should that not come through, I will be ringing by Friday at the latest. We all need
to sleep and not be stressing about this, particularly Jess! Anyway, we are at the
start of a heatwave which is expected to last all week. Due to this, Jess is currently
being picked up from school at lunch time and will continue to be, as the heat could
play a bad role in him coming down with anything, but in particular, we have been told
to expect that as his system continues to weaken from the massive amounts of chemo, he
may develop an infection in his central line. This happens because, as you all know,
we have bugs like E.coli, Staph etc in and on our bodies. Most of us though, have an
immune system to combat these things. Unfortunately, at the moment Jess doesn't. It
can be a hard call some days, because as you all know, he loves school and loves to
socialise, so we pretty much have to make the call then and there as to whether we
can do something or not. An infection in Jess's central line is potentially life
threatening and there is no way of knowing what, when where or why this may happen.
Fingers crossed for the results of the tests, and the next round of chemo has deffinately
been delayed until the 14th. Now Brooke can come up with us and we won't be constantly
worrying about if she is ok! Thanks to Lisa, Brandon and the lovely Ian for looking
after her yesterday afternoon. We love you lot and are grateful for your help.
Friday December 3, 2004
Ok, this is the phone call from Carolyn who is a registrar at RCH. Ultrasound normal. Yippee! CT - she will not be able to give me the results, because they are having a meeting with the Xray team about it on Monday, and she told me they will have to discuss the results with us when we come in. In fact she believes Dr Tim will have to speak to us about it. So there it is folks. Start crossing your fingers, toes, arms, legs - whatever it takes. Thanks..
14 Dec 2004 - 18 (and a bit!) Dec 2004 - Cycle 6
The 'and a bit' is Jess busting out at 1.30am Sunday morning as soon as his post-hydration
was finished! Why bother hanging around until the morning if you can go now, he says!
Nurses all thought it was pretty hysterical. The kid wouldn't sleep either - we think
he thought that if he fell asleep, we wouldn't wake him until the morning! Jess was
completely amazing this round, which we put down to his wonderful results, having a
positive psychological affect on him. No evidence of cancer left anywhere!!! Best
birthday and Christmas present ever. That will never be topped. Jess didn't get sick,
apart from one yuk feeling afternoon on the second day. He also came off the anti-nausea
tabs just 24 hours after he got out - it is usually 3-4 days after this cycle! Rich
came in for a visit and brought Jess a Lions truckers cap for Christmas. Jess was
exposed to Chicken Pox while in there and had to have the dreaded ZIG SHOTS! They
are an intramuscular into the bum - one in each cheek! OUCH! He is also on anti
Pox tablets for three weeks and funnily enough, due to the incubation time, should
he come down with the pox, it will be on Christmas Day!! Tweed Hospital is on alert
for us though and hopefully nothing will eventuate anyway. Only 1 more cycle to go -
starting Jan 10. YIPPEE!! MERRY CHRISTMAS to all of you, and thank you for your
continued support towards Jess - all that positive energy obviously works, no matter
what form it comes in. Roll on 2005, it will be a brilliant year!
Friday 24 December, 2004 - Christmas Eve!!
Well, Jess will be in Tweed Hospital tonight, and all Christmas plans have been scrapped! There are platelets being urgently rushed up from Sydney at the moment because Jess has none! He also needs blood, but wait, there's more: Jess is also neutropenic! He has 0.1 of a neutrophil, which meens no germ fighters for him. Unfortunately because of this, we cannot share Christmas with our friends and family as planned. Jess doesn't mind - he is looking forward to playing the ten million dollar machine! Will keep you all up to date as things progress. We were expecting transfusions - just not so soon! He will be fine in a few days. Have a Merry Christmas everyone!
Saturday 25 December 2004 Christmas Day!
Photos
Top Left - Jzzz, it's early!!!.
Top Right - The kids with the nurses
Left - The 10 Million dollar machine
The 'urgent' platelets finally arrived at the hospital at 7.30pm from the 5.30 flight
(Tweed hospital is only five minutes from the airport!) and luckily they don't expire
until Boxing Day, so we decided to stay home for the night and went in early this
morning instead - 6.30am. Jess played the 10M dollar machine (how surprising!)
and the nurses, Michael and Cathy also presented the kids with a christmas gift -
a teddy bear each and a board game 'Ropes and Rockets' which is the Toy Story version
of snakes and ladders. So now Jess has his platelets, but still has to wait for Tuesday
to have some blood, which is a bugger, because he suffers from some pretty gross headaches
when he needs blood. Oh well, it is all nearly over for good anyway. There is plenty of
Christmas stuff on telly today for the lad to watch. Merry Christmas everybody!!
The last one! Round 7, 11.1.05 to 15.1.05
Photos
Left - Hooked up to the 'robot' for the last time. Hanging the first of the last chemo! YAY!
Right - Very last chemo! They're holding me up!!!!
Well, this one was cool. Jess breezed through pretty much. The chemo didn't take too much of a toll and now we are back! There will be monthly visits with Dr Tim for the first year, for bloods and a review. Then quarterly Jess will have an ultrasound on all his lymph nodes - not a CT scan, because Dr Tim doesn't want to expose Jess to too much more radiation as it is accumulative in the body and he has had more radiation in six months than most people have in three lifetimes!. If anything shows up in the ultrasounds, though, he will CT. Jess will be having a full CT and Gallium scan in the next month or so just to make sure ALL the cancer has gone, then it won't be long until that bloody central line is out and Jess and I can have a swim!!! YAY!!! I promised him that I wouldn't swim until he is allowed to so it has been nearly a year since this little water baby has been in any kind of water (apart from showers)! A sad tale from this last visit is that we lost the beautiful Leo. Leo brought out the fun in everyone, and if anyone could go through a Bone Marrow Transplant and come out the other end, it was going to be him. We will always love you Leo and never forget you. Now, we have little Livvy and Jess.S having BMTs this week, we need them to pull through and won't stop thinking about them or their parents. Your life and priorities take a complete turn when you face something like this. Your silly little dramas don't seem like so much anymore when you are faced with life and death. Anyway, check the pics out, we have the last of the hooking up, and the last chemo! (Bright red like red cordial!) Thank you to all the supportive people - friends and family. You certainly realise who cares and who doesn't when it comes to important things like this!
March 4 - 7, 2005
Photos
Top Left - Mafia Mob (Uncle Matt, Uncle Sam, Chipper & Yours truly)
Top Right - Last minute adjustments
Left - Look at my hair!!!!
Sorry there haven't been any updates, but that is because until now, nothing has really been happening! Jess had a CT scan on Friday, and a Gallium scan Monday. The results will be given to us Wednesday. These tests are basically for restaging of the disease, so that we have a new benchmark to work with. We are hoping that come Wednesday, it will be completely confirmed that Jess is still in full remission. All going well, surgery to remove the central line will take place Thursday afternoon! Yippeeee!! We have just spent the last four days in Brisbane having the tests but also for the big wedding! Jess was ring bearer at his 'special' uncle Sam's wedding to Nikki. It was a brilliant day and Jess worked it! Will have to teach him some wedding etiquette though, he upstaged the bride and groom! Will post wedding photos when they are sent to us because some idiot forgot the camera! In the meantime there are a couple from the family gathering the night before - rellies travelled from far and wide. It was fantastic. Stay tuned will update on Friday after surgery is done. Fingers crossed!
Thursday March 10, 2005
Photos
Left - Before
Right - After
I DID IT!!!!! Got the all clear yesterday. The Doc can't find a trace of cancer anywhere in my body! YIPPEEE! So I had my central line out. It hurt a little bit for a couple of days but its ok now. I can't swim until the dressing and butterfly stitch fall off, and I am really trying NOT to pick them off...Thank you to everyone who has been along on the ride. Richard hurt himself the other day playing a practice match against Richmond. He busted his anterior cruciate ligament - OW!!! so he is out for the season. Bummer...he will just have to come and watch the other #14 playing. Us #14's are way cool! Thank you again everyone...gonna learn to surf now...
15 - 19 April, 2005
Photos
Left - Off to Melbourne!
Right - At the MCG
Wow!! Jess had his Make-A-Wish trip these last five days, and boy was it great! Jesse's greatest wish in life was to go to Melbourne to watch his beloved Lions play at the MCG! Thanks to some fast and frantic work by all at the Make-A-Wish team, Jess's dream was realised. Due to the Commonwealth Games next year, The MCG won't be hosting as many games this year and Brissie had only one game scheduled this year which fell on the 16th April, so time was of the esscence! We have a great journal with lots of great pics of the trip. If you would like a copy of the journal please email tcooper@bigpond.net.au and we will email it to you straight away! Melbourne was a fantastic and vibrant city and we all loved it. Definately have to go back! The only downer about the trip was that we were beaten by the Hawks (how embarrassing!!). We sent a copy of the journal off to Shelley from Make-A-Wish (she thought it was the most fantastic thing she had seen!) which she forwarded on to the PR department who are going to do a piece on Jess's wish in the June edition of Wishing Well, which is their quarterly newsletter. Many thanks again to all at Make-A-Wish.
Wednesday 20 April, 2005
Jeez, we just get back and Jess has to have his first lot of tests! So off up the road to Brisbane we go, not without some trepidation mind you. Every six weeks for the next twelve months Jess will be having an abdominal ultrasound and chest x-ray. Just when he thought his days of nil-by-mouth were over too! Not to worry - the radiographer thought that everything looked pretty clear, and this was backed up by Doc Tim later in the day - so there was a bit of whooping and hollering going on!! Yippee - still ALL CLEAR!! Jess is now on school camp at Tallebugera and probably having a blast - even though the weather has been pretty dismal..never mind - kids don't seem to mind bad weather - it only makes things more interesting, and more washing when they get back! Jess will soon be gracing doctors surgeries and hospitals around Australia on a new poster that Roche and the Lymphoma Support and Awareness group have created to raise awareness and to show that Lymphoma is non-descriminatory of age, sex, race etc. He is enjoying doing his bit to help others - especially when he gets to cook the onions at the fundraising barbeques!!