Interested in Donating Bone Marrow

As yet we do not know if Ed will require a Bone Marrow Transplant but the wheels are starting to be set in motion should he require. A number of you have offered to be tested which is a very big and generous offer. There may be some further testing within the family to find a match but apparently they are just as likely to find a suitable match on the Bone Marrow Donor Registry than within the family.

I will provide the link at the end of this post should you want more information but to follow is a quick summary. In short you will need to join the Australian Bone Marrow Donor Registry through the Australian Red Cross Blood Service. It is not possible to register your donation for an individual but by registering with the Australian Bone Marrow Donor Bank (ABMDR) it means they will definitely search the Bank for a match with Ed and should your donation be compatible for Ed then they would of course contact you.

Here is the link should you be interested:
http://www.abmdr.org.au/donor_home.php?id=1

Rolling Straight onto the next Round of Chemo

Unfortunately our little guy did not manage a discharge over the weekend due to a temperature spike and generally being unwell. He did however sneak home for a few hours each day in the afternoon for a little play and some special time with the Mother Hen and the Tornado before kicking off into his next round of Chemo yesterday.

This round commenced with a Lumbar Puncture, Bone Marrow Aspirate and intrathecal Chemo ( methotrexate) under GA yesterday morning. I figure you’re all pretty now well versed in the lingo so may as well jump on board with the right jargon. The afternoon was a further IV chemo cocktail which will continue for the next 5 days in hospital. This morning he’s not great and something tells me that this is going to be a harder round for him than the previous couple. All we can hope is that we don’t end up in a similar place to where we were at in March of this year. Either way it’s likely he won’t be checking out of Club WestMed for as at least 3-4 weeks.

Once this round is complete and his body recovered, around 4 weeks if all goes well, longer if there are more complications we’ll know how succesful these past 3 High Risk Blocks have been and whether he will require a Bone Marrow Transplant (BMT).

Yesterday we received the news that they were unable to find a perfect tissue match for Bone Marrow within the immediate family, with Pete coming the closest matching 5 out of the 6 criteria where they prefer a 6/6 match. We are waiting to see if they will widen the search within our family or whether they will head straight to the Bone Marrow Donor Registry which lists both national and international donors. Some of you have offered before to be tested and I’ll outline in a separate post how this may occur if you’re still interested.

Here are a few pics from the few afternoon gate passes  we managed over the passed week:

One of the many selfies he’s taken. Soooo KRudd

A couple pics inside

A visit from Dr Santosh Valvi, a favourite who has currently moved on

A Spot of babysitting of the tiny little brother

The tiny little brother flirting with the nurses

Yep that native does get a little restless coupled up in the room.

Below the selected hat to be carted off to the Clinic for his GA. Forever the showman.

Finally some proof, now on the net that the third child did in fact have his first birthday celebrated

Our Little Soldier Marches On!!

As I predicted the little guy has found this last round of chemo a little more difficult and has had a fairly rough 7 days.

He’s had several X-rays, and an MRI, CT scan and a Bronchial Lavage under GA to ensure there is nothing too sinister or bacterial infection lurking anywhere and it appears he’s got one of the many unknown viruses in his chest, along with the after effects of some intense Chemo that’s causing this sickness. Apparently there are 2 other oncology patients on this ward with similar symptoms.

He has had patches (say 5-6 hours) where he’s been bright, bubbly and cheeky but he’s also had some pretty rough periods with the intense bouts of pain, vomiting, diarrhoea and generally feeling pretty flat and unwell. These times have reminded us of how bad he was back in March afer the very first round, but fortunately for all of us there has been some sunshine in the storms.

In the past 7 days there have been 2 full blood transfusions and 5 platelet infusions ( yep there’s my plug again to give blood http://www.donateblood.com.au/who-can-give/am-i-eligible) and he’s currently on 6 litres of high flow oxygen to help him with breathing. All of this has helped to pick him up at times and his blood count is certainly on the improve, he just needs to ride out the virus.

Hopefully we’ll look to get out later in the week or by the weekend so that we can have a few days at home before starting all over again late next week which will kick off with a Lumbar Puncture for a Bone Marrow Biopsy to measure disease levels.

In other news his tiny little brother, the one who has spent the past 9 months growing up in hospital improving his immunity to infections, disease and super bugs by crawling around the hospital floor, inflating and deflating hospital air beds, learning to walk with the assistance of moving an IV Pole around the room, flirting with the nurses and winning the hearts of the beautiful volunteers down at the Sibling Care crèche turns 1 tomorrow. A big Happy birthday to the Tornado.

Yes that is texta on his face and pretty much sums up the cheeky guy. Do you think the colour suits him?

A Pop-Up Party for the Birthday Boy

Well once again the little guy has risen above the 2 diseases he is so gallantly fighting and convinced his doctors that his 3rd Birthday would be much better spent at home for a few hours with a Pop-Up Party rather than lying around a hospital bed. Yep, the only guy in the world with NPC and ALL is now 3 years old and despite the intense chemotherapy drugs that have been ploughed into his body over the past week he managed to put on the best show for his party. He certainly knows how to have a good time when he needs to, at least he’s got that good gene!!

On Friday evening his bloods low, heart rate up and he was generally feeling pretty unwell all around. But an early birthday present of platelets late Friday evening were enough to pick him up and help him shine through his 3rd birthday with much enjoyment and laughter.

The little guy wanted a bike, a helmet and a haircut, yes that’s not a typo, a haircut for his birthday. Last week we walked past a hairdressers and I asked him if she wanted a haircut. Well he thought that was one of the funniest things I’d ever said to him and he ran with it telling all of the nurses what he wanted for his birthday and watched with great amusement at their response to this ironic birthday wish. One of his other great gifts was a Fisher Price Hospital circa 1978 thanks to his Gramps and Grandma. There was one of these little FP hospitals in the nuclear medicine clinic where we spent the day once and he was totally obsessed with it. He actually has the Fisher Price Home which was his aunties original, nothing like a cool retro toy to be handed down a generation and now he has the hospital nothing like toys imitating life and I guess another little piece of irony in his life.
Here he is with his birthday loot

And not to be outdone, here is the brother with the hair cut Ed so desperately wanted

His birthday morning began with Debbie who stayed overnight, a visit from the music therapist to sing Happy Birthday, followed by a Birthday message from his fellow oncology mate Aiden via video since they are currently both in isolation and then a party from the nurses on the Variety Ward. All of this before heading home for the afternoon for a little celebration complete with an Elmo Cake requested by the boy and baked to order Isabelle? It truly was a happy and so great to see him in such fine form.

Yesterday I think he was suffering post party hangover blues as he was tired and flat and slept most of the morning. He did however manage to get home for a few hours in the afternoon, where for the first time in eages it was just the 5 of us at home hanging out all together and playing happy families- just what we needed.

He’s a little worse today with bloods continuing to drop and he hit a temperature which he hadn’t done for a few days so is back on the antibiotics. He received another transfusion this morning (there’s my reminder again to give blood if you can) and has a bit of a cough and cold so will be having a chest x- ray later this afternoon. His bloods will continue to drop until at least Wednesday or Thursday and they wont’t let him home until they see these trending up so I’m guessing we won’t be going home until at least the end of the week. He currently has tested positive to RhinoVirus (common cold) which is enough to keep him in a private room but will hopefully not progress any further.

To our beautiful Ed, the little guy who has totally changed my life, taught me amongst other things to live in the moment, how to love more, enjoy the now and appreciate all that life (both big and small) has to offer- Happy 3rd Birthday gorgeous guy!!!!