Tuesday, June 24, 2008

By the way, I DID get my tattoo done on Saturday and guess what? It didn't hurt a bit (I swear), I was prepared for agony, but it was actually quite relaxing! I will post a picture of it when it doesn't have cream smeared all over it!!! Now I just have to convince Peter that it is a good idea to get the other one I want...

Days Of Our Lives...

Well, what a week! And the next couple of weeks should be even busier! *groan* I am almost done with my Cert IV Small Business Management and also Cert II Auslan. There have been friend's birthdays, my beautiful nephew's naming ceremony coming up and the ladies from Make-A-Wish are coming on Saturday - WOO HOO!!! We have started seeing a speech therapist for Josh's language develoment as a sideline to the hearing issues. Finally, finally, FINALLY have a date for Josh's first ear surgery for the 10th July to replace the eardrum. Six months later he can have the bones replaced but that is dependent upon the success of the eardrum graft.

Scans are still a big mess and as far as we know, Peter has to take Josh to Perth on 30th June for scans, drive back home 3rd July right after GA for CAT scan and go into Albany Regional Hospital for his circumcision on 4th July. I take him back to Perth 8th July and home when he is recovered enough from the surgery. Poor little man is going to have a couple of weeks of agony coming up, but at least it will be over with before kindy starts and his ear will not be such an infection risk.

The ear has been pouring fluid out again which, believe it or not, is a good thing as it means there is no blockage and the fluid is not smelly which is always a bonus!!! Our GP called yesterday saying the urine catecholeamines were a concern (they are Neuroblastoma markers) but when I saw the results, the catecholeamines were missing so they either did not get printed or did not get taken! The infection marker in his blood was elevated so possibly a mild ear infection causing the ooze? Here's hoping that the GP doesn't have any results we are not privvy to as it is agony waiting to hear news about a possible relapse...
Hope for the best, reach for the stars and pray for good health,


Tuesday, June 17, 2008

First Camp Quality Event...

Well, the last few days have been a bit of a blur really! On Thursday night I went to the first Albany branch of Make a Wish Foundation big fundraiser. It was a showing of Sex and the City movie with nibbles, wine and raffles beforehand. I went with Mum and Laura (my beautiful best mate) and I had such a great time!!! I met the lady who is coming to talk to Josh about his wish on the 28th (Chris) and we got to sit in the VIP area at the back with nice chairs and footrests. I was given a beautiful bunch of pink and green flowers (gerberas, lilliums, orchids, gladioli, all my favourites) and Mum won two of the raffle prizes - she did buy 20 tickets! - and I also won one, not bad winning almost half of the eight prizes!!! I felt so spoilt and it was fantastic to be there with my favourite people. Plus I really enjoyed the movie.

On Friday we went to Bunbury to stay with Peter's grandfather. Anika screamed for much of the trip but we got there in one piece and just in time for tea. On Saturday after a trip to the shops, we drove to Busselton to see the kids Uncle Danny and stayed for a couple of hours. Sunday morning we went to Bunbury Ten Pin Bowling for a Camp Quality Family Fun Day, our first ever. The kids had a brilliant time and got to see their friend Damon from RMH who Anika has not seen for ages. There were choccy frogs, sandwiches, hot chips, muffins galore, cool drinks and bikkies; what more could a kid want?! My Dad came down from Mandurah for a bit of a visit in the afternoon and we had a quietish night with the kids being right little buggers again. Monday morning we headed back home to unpack, do washing and all the other fun stuff you do when you get back from holidays.

We are still waiting to get dates for Josh's first ear surgery (to replace the eardrum) and for scan dates. I've been in contact with Disability Services and the lovely Kim has now got the ball rolling with Speech Pathology. There are so many balls to juggle and I only have two hands!!! As soon as I get a few balls in the air I notice one sitting on the ground and go to pick it up only to have all the other balls come tumbling down around me! The things I never knew BC (Before Cancer).

Anyhow, we are all healthy and generally well if a bit tired and grumpy. Looking forward to getting my tattoo done on the weekend as I will get to sit still for a whole hour and noone will be screaming in my ear (OK, maybe I will, but I am talking about the midgets who have taken over my life! AKA Josh & Anika).

Hoping the storms have missed you and that you are all happy and healthy,


Wednesday, June 11, 2008

Last night was a stressful time as Josh was complaining about back and chest pain. It is probably just a side effect of the Roaccutane medication he is on but it is always very stressful when things like this happen. Back pain is listed as a likely side effect and chest pain as "Less Likely" but not rare and hopefully that is what is causing it though these were the major symptoms before Josh was diagnosed so I sincerely hope the FBC (full blood count) taken yesterday shows up fine and the urine catecholamines are also normal (testing for Neuroblastoma markers Vanylilmandelic acid - VMA and Homovanyllic acid - HVA).
There is also some bruising - again could be the meds but when you're a cancer mum all these things make you VERY nervous! His poor skin is still taking a beating.
The pic next to the text is of round 3 of Roaccutane after it had healed a bit. The stuff is terrible for him but we'd do anything for a healthy boy. The mood swings are the worst part and the uncontrollable temper and aggression - the bits you can't see. He is constantly in inner turmoil at the moment. Poor little man.

This morning there was a very beautiful rainbow on my way to work so I take this as a positive sign as rainbows are very special to Josh as before he was born I saw a perfect set of three nested rainbows (our three beautiful kids?!) the day I discovered I was pregnant. There was a lovely rainbow the day he was diagnosed too so I just knew he would pull through long enough for the chemo to take effect and his lovely crystals from his bedroom at home were brought to his first hospital room and another my wonderful best friend Laura got him spread rainbows around the room and made him smile. These crystals now hang in our kitchen window and make me feel peaceful everytime I look at them.

The doctor said I have a) sinus infection as I knew hence more antibiotics and a CAT scan to check sinus damage that could be causing the infections and b) Carpal Tunnel in my right hand which will require surgery (not an option just now with three sugeries coming up for Josh and me needing wisdom teeth out...I'll get around to it one day, I swear!) so I am also on anti-inflamatories for now. Soon I may rattle!

Anika woke up in a lovely mood this morning and had to give me "lots of loving" before I could go to work. It is so nice to have kids who tell me how much they love me every day, it is so special.

I am still trying to work out how to put links to other sites on my blog other than just typing them in so I will do that for now and work out how to put in permanent links one of these days.

Imogen's site www.theholmesgang.blogspot.com and baby Blake's www.tinyearthangels.com/babyblake.html (Hope you don't mind me adding these Fi and Ree.) and the site for pages on other NB kids is www.acor.org/ped-onc/hp/neuropages.html There are some truly inspirational kids out there and each and every one of these kids stories will touch your heart, I guarantee.

We are heading to Bunbury on Friday to stay with Peter's grandad and see his brother and his kids and also to participate in our first Camp Quality fun day! Every other event Josh has been too sick to attend or has meant a trip to Perth (not really going to happen on our income just now!) but as this one coincides with a visit we have been talking about doing for ages we are all systems go!!! The kids are so looking forward to this Bowling Day and seeing their much loved "Uncle" (great Grandad). Hopefully we will see my dad too if he can get down from Mandurah.

Wishing you an amazing day,

Hannah XXX

Josh had a normal birth although he was posterior and happy early life though he did suffer terribly with Gastro Oesophagal Reflux Disease and slept very poorly.

At the age of 3yrs I noticed a change in his personality and his skin got very pale. Trips to the doctors, dietician and Occupational Therapist did not show up anything and life went on with plenty of tantrums and outbursts along the way. When he was asked how he was he always said the same thing “I don’t feel good, I am sick”

At around 3 1/2 yrs old in early April, Josh caught a flu bug but we were very concerned as he was off his food and complained of nausea and disorientation. Trips to the hospital and doctors over several weeks did not present any answers other than that the virus was taking a long time to clear. Josh began to get back pain which became progressively worse.

Finally on 10th May I had had enough and took him back to the doctors, pointing out the lumps on his lymph nodes that were getting bigger by the day and new ones coming up on the back of his head. Josh was in agony and not even able to get out of bed due to the severe back pain.

The next day we were told to head up to the children's hospital in Perth as it was possible Josh had leukemia. We knew it was not that but feared it was much worse. We were right.

Within three days Josh was scanned, had a central line into his heart put in for chemo and we were told he had less than 30% chance he would live. There was a massive tumour 3/4 of the size of his abdomen, his bones were almost all riddled with cancer and his bone marrow was 99% Neuroblastoma cells. He had a couple of weeks to live without treatment so we embarked on six rounds of horrific high dose chemotherapy, surgery to his primary tumour, mega dose chemotherapy and stem cell rescue, 3wks of radiation treatment and six months of drug therapy.

Josh has suffered line infections, 5 months of Rota virus, chlostridium gastro, massive ear infections that have destroyed the eardrum and bones in his left ear which require surgery to replace and has been left permanently deaf from the chemotherapy in the other ear.

Today Josh is a happy 4 1/2 yr old who has just made it through one year since diagnosis, he is no longer tube fed, his hair has grown back thick and curly and he is almost finished his six months of meds. He rides his bike, is looking forward to going to kindy for the first time in July and is hoping, praying and dreaming every day that the dreaded cancer does not come back.

Well, today we have already had a bit of a challenge with the kids both crying that they did not want me to go to work (although they were very excited to see Granny!)
Josh's face is still looking terrible, in fact it is still getting worse and the sorbolene and vitamin E oil is doing little to help as it is inside his ears and nose that are peeling the worst.
We were very excited to meet the kids brand new cousin Seth who was born on Saturday night! We went up to visit on Sunday afternoon and again Monday morning when I got my first cuddle! So beautiful and it really reminds you how incredible it is to see a gorgeous healthy baby delivered when you have had a child so sick.
The marvellous people from Make A Wish Foundation are due to come and speak to Josh about his wish on the 28th of this month, which is so wonderful. He has been talking about it non-stop and asking if "they are coming today?" every morning?! I am interested to know what he will choose and I am encouraging him to make a go, be or meet wish rather than a "have" one as it would be so nice for all of us to have the experience of seeing him enjoying life and doing something he would never have been able to do otherwise. I think he will probably continue with his plan to go to "a really big zoo and pat the elephants" which I KNOW he would so love and which his long suffering sister could be part of too. In many ways, she has suffered as much as Josh has.
Anika is such a fantastic artist and as soon as I told her Seth had finally arrived, she had to rush off and draw him a birthday card! So cute. She also wants to teach him to sing and dance which she is also very talented at. I am so proud of what a lovely girl she is, and so very beautiful too.

First Venture into the Unknown Realm of Blogging!!!

Hi Everyone and welcome to our journal!!!
As I am sure you have already read in our story, our little boy Joshua has been treated for the past year for Stage IV Neuroblastoma.
What you probably don't know is how energetic, loving and inspirational our boy is!
Currently undergoing Roaccutane therapy to prevent the tumour growing back (it is the drug used to treat adolescent acne), Josh is suffering quite a few side effects at the moment. This week is his last in the cycle of two weeks on, two weeks off with one more cycle to complete (woo hoo!!!).
The side effects seem to differ with each cycle...Cycle 1; cracked lips and night terrors, Cycle 2 cracked and bleeding chin and bad temper tantrums and sleeplessness, Cycle 3 whole face cracked, bleeding and hurting with emotional outbursts, Cycle 4 I upped the dose of internal Vitamin E and started applying it topically which helped the cracked skin but it still happened on the chin and arms and legs, lashing out at sister and us, Cycle 5 Blood noses and peeling everywhere I couldn't apply Vitamin E (in ears, on scalp), still awful mood swings but sleeping well, Cycle 6 very bad tantrums and uncontrollable lashing out again.
The good thing is that whilst his blood counts go down a bit when on the treatments, they recover well afterwards with one last month having everything in "Normal range" for a child his age! What a buzz!!! The other HUGE bonus is that he is able to be at home to have these drugs which he is relishing after living at Ronald McDonald House for almost a year. It is a fantastic place and we dearly miss everyone there but would we trade our home for our second home there? Not a chance!!!
We are all missing our hospital and RMH friends but still get to see a few of them when we go up. Josh is due for more scans within the next two weeks to check for the reoccurance of disease and is on three monthly scans at the moment. Believe it or not, the scans which he used to hate so much due to claustrophobia and having to be still for almost two hours or anaesthetised are now not an issue! All the work I did with him (with the help of the amazing nurses at Sir Charles Gardner Hospital) for the daily Radiation anaesthetics really paid off and he is now one cool customer in the scanning bed too!
I am hoping everything goes excellently not just for Josh but also for his special little friends Imogen, Blake and Rachael. They are very special little kids and if you get a chance, please have a look at Immie's blog by her mum Fiona (she is a scream) and Blake's page, what that little boy has been through is incredible but he is such a beautiful old soul.
Love and Rainbows,