Oncology Clinic Visit 5th Oct 2011

Thanks to everyone checking in on us and sorry I haven't been updating the blog. When Oscar gets sick things get very crazy around here and with a whole lot of other stuff going on its just been heads down and get through it.

Oscar was in hospital Friday 23rd September with a temperature. His white cells went from 3.6 to 12.6 in 48 hours and all his other bloods followed. Fortunately, the Dr on call at Emergency sent us home just before midnight after checking there was no sign of infection in his urine and ears, nose, throat etc. We were glad to be home but his temperature continued relentlessly for another 48 hours. Panadol did nothing and he's not allowed to have nurofen so it was baths and washclothes and no sleep but he fought it off himself and was back on track three days later.

This week we were keen to see if his bloods had recovered and they are certainly heading back down in the right direction:

Hb: 122
WCC: 5.4
Neut: 3.9
Plts: 272

Still, the target for white cells is between 2 and 3. No change to chemo and we'll see how he is on the 19th.

Auden loves being part of the journey and always gets excited when I say we are off to see Donna and Dr Margaret. This morning he promptly sat down and drew them both a picture as a present, which they loved.

We are so exceptionally lucky to have such a caring community to share the journey with. In particular, Donna and Margaret have become like family to the boys and we are very grateful that they have been present from the very start of Oscar's journey and continue to be such a giving and welcoming presence in our life.

I'll let you know how we go on the 19th.

I hope you and all your families are doing well. Take care of yourselves and each other.

x

Since my last blog we have been super busy: Pete has started two different jobs, I have had to chase the first employer for money as he was very dodgy, Oscar’s bloods crashed and he was an emotional roller coaster that we all had no choice but to ride, Auden started to get very angry that his brother was so violent one minute and then so much fun the next, we’ve all had a virus, my mum moved in until her new unit was ready, my mum moved out, Pete had a middle ear infection, then a severe tooth ache, he had his tooth removed (as an alternative to the root canal the dentist was keen on) and he injured his eye at work. His ear ache eased, his tooth healed and his eye is still giving him trouble – he has a scratch on the cornea. Oscar spent Saturday morning in emergency with a foot injury that thankfully turned out to be soft tissue damage. Oscar came home proud of his bandage and Peter popped his eye patch on, Auden had a head cold and mummy was in need of a good lie down. What mummy isn’t?

In amongst all that chaos we have been getting on with the usual regular activities as best we can with the highlight being Auden and Oscar's swimming lessons at Knox Grammar. I can highly recommend them to everyone and very reasonably priced. They have given our boys a private class for the price of a group one and been absolutely fantastic.

So, all in all, like everyone else, we have been super busy but doing very well.

It is what it is.

I am that I am.

Take care and happy fathers day to all you great dad’s out there.

The Certainty of Change

It’s been a while since I updated you – apologies but it has been an extremely hectic month. So many things have happened I don’t know where to start. Except, I guess, the big stuff.

Our beautiful Marshy(our cat) had to be put down. I went to the vets as he was throwing up and off his food and was told that he probably had cancer. The vet started to explain that we could give him Prednisolone injections to see if he responds – this is the same drug Oscar was on for two months and made him unable to walk, woke him several times a night for a feed and bloated him up like a balloon. Just the mere mention of it made me sick to my stomach. So I said I needed to think about it but as she investigated further she found he had a kidney stone and his kidneys were completely shot and we had no choice but to have him euthanized. The vet kindly gave us a few days so I could take him home and Pete could get to see him and we could all say goodbye. It was an excruciating few days where all he wanted was to be on me and not just sitting on me but right up at my face – he wanted his face against mine. He slept next to me and it felt like he was genuinely trying to crawl inside me. So I told him – no need, you are already in there. We were so lucky to get to say goodbye. I held him as the vet gave him the injection and I know he had a good life and a good death, which is more than many living beings get. So, we are grateful, though sad.

The day after I was told the about Marsh Pete came home early from work because he had been retrenched. This was huge in many ways but especially because his boss had been so superbly understanding and supportive of Pete’s situation with Oscar and gave him time off whenever he needed it. There are no words sufficient for the gratitude we feel to have had that kind of understanding at such a hard time. This is especially the case because the Dr’s and Psychologists at the hospital made it very clear to us that the children who have the support of both their mother and father during treatment are statistically more resilient and able to recover from the trauma. We took that to heart and did our best to give Oscar the support he needed and that was only possible because of the understanding of Pete’s boss. Thank you, thank you, thank you.

And so we move on.

Pete got a new job within a week of being retrenched - how lucky is that! And we are all adjusting to lots of changes.

Auden has been asking endless questions about Marshy. It was huge for him as Marsh sat on his lap every morning and kept him company when we were all away for long periods of time and when he was missing Oscar so much. Oscar hadn’t been asking any questions until yesterday when he got up and walked into the kitchen and said, “Let’s go get Marshy from the hospital Mummy”. Ah, the sound of a mothers breaking heart. This is the exact connection we were trying so hard to avoid. That the boys would think that Marsh got sick and went to the Dr’s and didn’t come home is our worst nightmare because Auden is always so worried when I go out with Oscar that we are going to hospital and won’t come home. In fact, whenever we go anywhere Auden starts saying over and over, “Mummy, Daddy, Oscar and Auden come”. This is whether we are going to the park, the shops and so on. When I drop him to pre-school and leave with Oscar he asks over and over, “Mummy and Oscar come back. Not go to hospital.”
 
So you can see why we wanted to avoid the association that Marshy got sick and went to the hospital and never came home. But you can’t change life and the boys have some wiring in their brains from their experiences, as do we all, and this is just their journey.

To create a positive association we planted a tree for Marshy and the boys both helped us dig the dirt and said, “we love you Marshy”. Time will heal and all is well.

On the medical front Oscar is doing well and his blood results were within the preferred range for the first time since starting maintenance therapy 5 or 6 months ago. So this is great. On the down side he is getting a lot of the side effects such as nausea and vomiting and extreme constipation no matter how many anti-nausea or anti-constipation drugs we give. It’s not affecting him all the time but a fair amount – enough to make it uncomfortable for him.

He is also still very anxious around new people. We go to Little Kickers (toddler soccer) every week and so far he spends most of the time crying and being fearful of everything and everyone. Any new people or new environment does this to him. It makes for an exhausting hour trying to coax him to rejoin the class and make sure he doesn’t disrupt everyone elses fun, including Auden’s – who gets very distracted by Oscar’s crying.

So – it’s a mixed bag and there are days where I am reminded that Oscar has had a huge journey and has special needs (for want of a better way of describing it), as all children do. In his case I forget sometimes just how far he has come and how much it has affected him and then, one day or two, he reminds me that he is special in many ways and that we have to take it at his own pace. Auden adds to that by always taking care of brother and by being acutely aware of where all of us are and reminding us constantly that he likes it best when we are all together.

Amen to that.

Clinic Visit - Bone Marrow Results and Bloods

Oscar's bone marrow results confirm that his blood is clear of all Leukemic blasts! So, he is still in remission and all is well.

His white blood cell count is still too high at 3.5 (although this is the lowest his cells have been on maintenance). The goal during maintenance therapy is to keep the white cells between 2-3 to ensure any dormant blasts are killed off. Before increasing the chemo for a 6th time we are checking Oscar's liver function just to be certain his body is coping.

We had the joy today of running into another little girl, Ella, who was diagnosed not long after Oscar. We haven't seen her in many months and she was looking amazing. It was great to see her and her mum and dad during better times. Oscar and Ella have shared hospital rooms and many, many hours in clinic together fasting, not fasting, having treatment, getting bloods taken and playing in the play room. In fact, today was her one year anniversary and she looks so good with all that hair! It was also good for us to get some tips from one another and just take a moment to say - we made it this far! Congratulations Ella and all your family.

Dr Margaret is away on holidays for a few weeks so we will be taking our luck with who we see next visit. Oscar has been very tired in the last week but aside from that he is a normal 2 1/2 year old having fun with brother and getting into all sorts of mischief.

Thank you. Thank you. Thank you.

Take care everyone. x

Anniversary Bone Marrow - all done!

Oscar's bone marrow aspiration is "all done", as Oscar likes to say. He also had his second flu vaccine shot while he was under anesthetic. His bloods are stable. I'm not sure but I think he won't need another bone marrow aspiration for another 12 months, all being well. He's had so, so many and its great to have another milestone behind us.

When he has blood taken now he walks into the room and says VERY LOUDLY to the nurse, "Don't hurt me". When she continues to get the needle ready he repeats it a number of times and finally gets up real close to her face and says, "Plleeaassee, don't hurt me". It makes the nurse feel very bad but I absolutely love his ability to stand up for himself and get himself heard in a place where it is so easy to become your patient number. They all adore him in there and when he gets home he walks in the door and states, again very loudly, "Had fun with Donna and Margaret" - meaning Dr Margaret, of course. Its a testament to the incredible job they do that he can go to the clinic and have a nasty bone marrow aspiration and come home to declare how much fun he had. We are so lucky to have such wonderful people to share this journey with.

All is well. Thanks for checking in on us.

One Year Anniversary

Yesterday was the 1 year anniversary of Oscar's diagnosis. We had a wonderful day - visiting Wahroonga Park and later going to our friend's, Brooke and Curtis's house, for a play date complete with Tim Tams and mini donuts by the log fire. What more could a person want? Life is good.

In the lead up to the anniversary the boys have been having fun painting 'Thank You' cards which we have posted out today. I hope I have remembered everyone - so, so many people to thank. I have been waking in the middle of the night remembering another incredible kindness and adding names to the list continually. So, if I have left you out, please forgive me. I will no doubt wake one night and wonder how on earth I could have let such kindness slip my mind. We have been so blessed with kindness and I have been so sleep deprived and overwhelmed it is a blur at times. Rest assured, every little thought, text, prayer, food drop-off or other generosity has been greatly appreciated and the two words - thank you - seem so inadequate.

Finally, I wish to thank each of YOU, who have taken the time to read this blog despite the fact that it has been sometimes unpleasant reading, sometimes sad, sometimes whinging, sometimes way too personal, sometimes distant and sometimes strange. Also, of course, hopefully, sometimes encouraging, positive, hopeful and maybe even playful. Either way, it has been a source of outlet for me and has helped me find a voice for a journey that very often defies articulation.

So, thank you for bearing with me and hearing my voice in whatever way I could manage to articulate it.

When we open our hearts and listen to another persons story we are listening to ourselves - for we are all one big united family experiencing this sometimes crazy thing called life.

Thank you, thank you, thank you - we are blessed. x

P.S. We were at hospital today and Oscar's doing well. His bloods are heading in the right direction as they have come down somewhat but need to keep heading that way. All is good. Next Thursday 30th he is booked for his bone marrow biopsy.

Oscar's June ...so far

Oscar is doing well. The bone marrow is re-booked for 30th June. I'll let you know how it goes. We are hoping he is healthy and we can get a more accurate blood reading soon. He has been on maintenance since March and so far we haven't had a real indication of how the chemo is working as he keeps getting sick and has abnormally high bloods while he fights off the latest infection.

All part of the journey though so we are going with the flow and not focusing on results, outcomes or agendas.

This month we have declared 'Gratitude' month in our house as we head towards the anniversary date of the beginning of this journey. I'll be posting some of the 'thank you' projects we are throwing ourselves into as a way of honouring everyone who has helped us get this far. More on that later.

Thanks for stopping by and checking in on us. We hope you and all your families are taking care and staying well. x