Check up, immunisations and bribery

Oscar didn’t want to go this morning to see Dr M for his check up and cried and bargained with me for the first half of the trip to Westmead. He asked me to tell Dr M that he didn’t want any finger pricks or any needles. There really is no way to explain away the fact that he was having both today so I did my best at distracting him instead.

When we got there he announced to anyone who would listen (e.g. the entire Oncology Clinic) the following:

“I don’t want to be brave and I don’t want any needles.”

This left a somewhat uncomfortable silence.

When we sat down there was a baby next to us and Oscar said to me, “Well, babies don’t be brave.” So I explained that unfortunately sometimes even babies have to be brave and that he was very brave when he was a baby. This particular baby turned out to be only one month younger than Oscar was when he was diagnosed which surprised me as much as Oscar – it’s amazing how you forget (and a shame that you never do, if you know what I mean).

Then someone from a Church group approached us and gave Oscar a puzzle and a car as a present and started praying over him. Oscar thought the present was great but was a bit confused by a stranger kneeling beside him and saying his name over and over in prayer.  The girl next to us was also being prayed for by another person from the same Church group and she was somewhat evangelistic in her approach. Oscar jumped into my arms and said, “That Lady is scaring me.” So we headed for the play room.

Dr M came and got us and gave us good news. His bloods are good and we now move to two monthly (instead of monthly visits)!! This is another step forward we are very grateful for. In the last 3 years Oscar hasn’t ever gone longer than 4 weeks between visits so it’s exciting.

Then we headed to the treatment room for his immunisation needles. We were in the room with the big fish tank which also happens to be the room they did all those bone marrow aspirations and lumber puncture procedures. I lost count how many – but lots! As soon as Oscar saw we were heading there he LOST THE PLOT. The less said about it the better. As awful and un-fun as it was he wasn’t backward in asking for a treat afterwards, remembering that there are ice blocks in the freezer. He knows how to work the system – he also got another present from the nurses and a lolly pop. Seriously, no wonder he uses bribery as his main ‘negotiation’ tactic.

He fell asleep in the car on the way back and when we got home he woke up and screamed at me in an absolute rage that he hated me and he told me he didn’t want any needles and that “When Daddy takes me he doesn’t make me have any needles.” (this is a bit of a low blow as Pete only took him once last month when I was vomiting but hey, I’ll be the bad cop any day if it means Oscar gets to be healthy).

I may be in for a hard afternoon with Oscar being so angry with me but it’s all good. He can blame me all he likes. I’m just so glad to be heading into the rest of winter with him protected from all those serious contagious diseases which posed a real threat to his life during his treatment.

So, we are grateful to move one more step forward on this journey. Hooray!

Thanks for checking in on us and love to you and all your families. Much love, Cindy x

Three years....

Three years ago today we received Oscar’s diagnosis. We’ve come such a long way and yet that moment is so close below our thin skins at times.  It is not who he is or who we are as a family but it is definitely a part of him and us and the energy that makes up the space we inhabit.

I have nicknamed myself ‘the crying lady’ this week. Somehow this makes it feel lighter than it is or perhaps less discombobulating. I’m all at sea, my mind unable to grasp facts, details slipping away through the strangeness of my minds inability to grasp them. I forget important dates for school, pay the wrong bills to the wrong accounts, get angry at myself that I am so ineffectual and then, randomly and at inconvenient moments, cry a lot.

Much of my tears though are a happy sort of crying as Oscar is growing up so much and I am rendered emotionally senseless by the sheer amazement of it.

Yesterday we had a magic day together. We dropped Auden at school and then came home as Oscar wanted to get dressed in Auden’s soccer gear, including and especially his studded boots. Then we went out, boots and all, to a café and had a special treat of banana bread and a milk shake. When we got home I asked Oscar to choose a book to read and to my amazement he chose the book we got from the Leukaemia Foundation, ‘Joe has Leukaemia’. In the past, when I have tried to read this book to him with the idea that it might help him process his experience he has screamed at me violently and pushed it away. So I was surprised and the timing was somewhat loaded but I forged ahead. This is how our reading went.

Me (reading the title page): “Joe has Leukaemia”

Oscar: “I had that.”

Me: “That’s right, you did.” Then I started to read the book, taking Oscar through the story of Joe feeling sick, having tests, being diagnosed, staying at hospital and how it made everyone miss everybody else and how Joe just wanted to go home.  Then we came to a page with an explanation of what Leukaemia is with cartoon character red cells, white cells and platelets. To my surprise Oscar pointed at them in turn and said:

Oscar: “Red blood, White blood and Pikelets (meaning platelets of course).

Me: “That’s right, buddy”.

We progressed with the story until we got to the page with pictures of Joe with a central line.

Oscar: “I had that.”

Me: “You sure did.”

Oscar: “Yeah, and Z has that too.” (referring to Auden’s friend who is currently going through chemo).

Me: “That’s right, buddy, just like Z.”

Then I turn the page and Joe has lost all his hair.

Oscar: “Just like I did and Z too.”

Me: “Yeah, and then it grew back, didn’t it?”

Oscar: “Yeah, and Z’s will too.”

Me: “It sure will.”

Then we get to the part of the story where Joe is well again.

Oscar: “He’s all better, just like me.” In his excited voice.

Me: “That’s right.”

Oscar: “And just like Z.”

Me (trying to keep the crying lady at bay): “Yes, we hope so, buddy.”

Oscar: “Yeah.”

On the last page of the book Joe says he wants to be a Dr when he grows up so he can help children like himself. Then it ends with the question: “What would you like to do when you are older?”

Oscar:  “A Fire Engine,” with much enthusiasm.

Me: “You mean a Fireman?”

Oscar: “Yeah. And when you grow up I want you to be my mummy.”

Me: “OK, buddy, it’s a deal.” As I say this the crying lady takes over against my best efforts to keep her at bay but Oscar fortunately doesn’t notice because he’s already moved on to playing with a toy and is all done with the story.

I share this with you because in a short space of time Oscar sums up what my limited linguistic ability cannot. He demonstrates the in-the-moment resilience that a survivor must adopt and yet with the knowledge that it is a shared experience. For as we are so fortunate that Oscar has finished treatment and is doing so well, we are very aware of those who are still going through it. Our story is part of a greater story and especially so this week when we personally know several families who are having big weeks in their own journeys regarding this illness and the impact it can have on the bodies and minds of those inflicted and their loved ones.

Today is a strange day. It’s like any other day. It’s a special anniversary of a moment I don’t want to relive. It’s a celebration of how blessed we are. It’s a reminder that others are still fighting hard and that even others have been less fortunate. It’s a drop in the ocean that is life. It’s whatever we choose to see it as in any given moment.

Mostly, though, it is an opportunity. As every moment of now is a moment of opportunity. And so I wish to take the opportunity to say a deep thank you to everyone who has journeyed with us, helped us along the way, sent us positive thoughts, prayed for us, held our hand or just helped us heal. We send our deep gratitude to all the staff who have worked so hard and put up with the crazy lioness version of myself that prowled up and down the hospital ward with worry and terror. And to the other parents who journeyed alongside us and gave us tips and cups of tea along the way.

The other night when I put Oscar to bed he said, “Mummy, I have a little heart but everyone is in my heart, except X (a child at preschool) who is mean.”

This made me laugh but it’s also very wise and true. You are all in our hearts, forever and always. Thank you, thank you, thank you.

Here are some photo’s that capture the magic that is Oscar aged 4½ and going strong. 

I love you to the moon and back, my special family.

Thanks for checking in on us and love to you and all your families too. Love Cindy x

Hyperbole and a Half: Depression Part Two

Hyperbole and a Half: Depression Part Two

Check out the above link for a brilliantly insightful and funny explanation of depression. It really is exceptionally good. X

A short and sweet update

Firstly, thank you so much to everyone who sent me encouragement and support over the last month or so - I have really needed it and I have been so lucky to be surrounded by your kindness. THANK YOU.

Secondly, Oscar's blood results were good on Friday. We are very blessed.

I have been busy like all mums and have been trying to look after a few of my own health issues and needs that have been neglected over the last several years so I've dropped out a bit. Lots of time spent at Dr's, specialists and some challenging adjustments but its good to be crossing these things slowly off my overdue 'to do' list.

So I'm keeping it short and sweet.

Thanks for all the love, Oscar's bloods are good, he still has kidney pain that I am following up on but hopefully this will sort itself out soon. With the help of the exceptional staff at St Stephens Preschool Oscar is settling in a bit better and with the help of a wonderful psychologist I am starting to understand his post traumatic stress and find some strategies to help him. I am finding more and more ways to walk around inside his complicated little shoes and I hope that he is starting to feel a bit more understood. Pete is working lots and doing well. Auden is IN LOVE with school and soccer and is sharing more and more of his wonderful self with us as he learns to read and write. Magic stuff, this kindergarten journey.

Thanks for checking in on us, as always, and thanks for all the love along the way. I hope you and all your families have some special time together over Easter.
Much love, Cindy x

The universe, its sense of humour and seeking that silver lining...

The universe has a wicked sense of humour, don't you think?

This morning I woke up and found myself worrying about Oscar again so I thought I would distract myself by reading a parenting magazine I subscribe to on my ipad. It's good for recipe ideas for trying to get Oscar to eat something other than bacon, or salt or milk. Anyhow, I had given myself a good talking to and told myself to do something positive. Find a new recipe to cook for tonight or distract myself by reading a few articles.

I flip a screen up at random and the title is, 'Building Hope'. Sounds like a nice positive story to distract me with. It turns out to be a story of a little girl who has ALL (the same leukemia as Oscar) and has relapsed twice. Yep, like I said the universe has a wicked sense of humour sometimes.

The reason I am sharing this with you though is to let any other families with kids with cancer know that there are some great improvements in treatment being researched and trialed all the time. This particular little girl was told to go home and arrange hospice care but her parents did some research and flew her directly to The Children's Hospital of Philadelphia where an oncologist had pioneered a new leukemia treatment which involves removing T cells from the patients body and then programming them in the lab to attack her leukemia cells and returning them to her body six weeks later. Three weeks later tests showed there wasn't a single cancer cell in her bone marrow and seven months later there are still no signs of the cancer returning.

It is my deep desire that no one reading this ever needs this information but, just in case you might, I wanted to share it with you. Imagine if this became the future for cancer treatment and perhaps even replaced the need for all that horrendous chemotherapy. Imagine if it cured all those patients who relapsed. Imagine if it can be used in other cancers and in adults too. Imagine....keep researching....keep up hope and stay positive as much as you can (and be kind to yourself when you can't).

I send this information out into the ether and I hope it reaches the right people at the right time and that the universes sense of humour has a miraculous silver lining for any families suffering at this time.

Take care beautiful people. x

Results, layers, choices...

I have been waiting to be in the right frame of mind to write an update but have had trouble finding that 'right' space in me head.

Oscar had his check up last Wednesday and all is well I think but it was a bit of a different experience. His white blood cells were the highest they have been since he was first diagnosed (when they were extremely high). The Dr checked out all his bruises and his testicles and, well, all of him. This is not the way it usually is but they played it very cool so as not to alarm me. The thing is though you can pick up that energy in the room. After being asked if he has been unwell I explained he had a head cold so we think that may be the cause of the high cell count. I think they were worried.

The next day we went to the urologist and got the results from Oscar's kidney tests. Basically, one of his kidneys is doing all the work, probably because his reflux on the other side prevents the other kidney from doing anything. We aren't going to do the test to confirm the reflux because it is a pretty awful test and whatever the outcome won't change what we are currently doing. This is all ok, you can live with just one kidney (although it freaks me out that only one kidney had to do all the work of coping with the huge amounts of chemotherapy that Oscar has been through). There is nothing we need to do other than ensure he goes to the toilet regularly and have his kidneys checked every 12 months to make sure surgery is not required.

Overall, I am not fully capable at this time of functioning well let alone articulating myself here. Wednesday freaked me out and I finally succumbed to the temptation of researching 'relapse' on the Internet. I promised myself I wouldn't and have not done so in the last eight months since he finished treatment. But this week scared me and then this time feels a bit crucial because the chemo will have finally left his system. Now we get to see how he goes without it. I didn't sleep much after this and I am not proud of the fact that I can't be more positive, less fearful.....especially when I recently ran into another child who went through treatment about a month ahead of Oscar who has relapsed. How can I not possibly be more ecstatic and full of enthusiasm for enjoying every moment that we are so lucky to be having with Oscar? 

When we visit hospital there are layers of emotions. Nothing is simple. We get the joy of seeing the staff who have in many ways become a part of our extended family. We get the gut wrenching devastation of witnessing other children's journeys at various stages along the way. We get the magical rush of pure surprise and delight at seeing a child with hair and health for the first time (for we have only previously known them during very real sickness). We feel survivors guilt when our child is doing well but another child we know and care about is suffering, relapsing or worse. We feel the shame of not having the courage to always live with the gratitude and joy that good health should result in. We feel powerless about the circumstances we and our fellow journeyers are experiencing and there is the fear/concern/worry that sometimes creeps back in despite the fact that we know they are not useful emotions.

They say we create our own reality with our thoughts and even though we can't control the circumstances of our life we can control how we think about it. This is true. This is what gets you through. At the other end though there are just too many thoughts sometimes. Too many layers. Making the right choice of thought is something we have to have the self control to manage. No one else can do it for us. We also have to model it to our kids who aren't always doing so well with the many, many things that they have been bombarded with along the road to good health.

Sometimes though, there are too many thoughts. Too many layers. 

For me, at this time, I must retreat. Don't get me wrong. I know I'm extremely lucky at this moment in time. I know that every day is precious. I know that I can make better choices but sometimes we all need to take a break from making any choice at all. 

So, I am going to just 'be'. Whatever layers surround me I am going to breathe in and out, do yoga, meditate, try to get some good nutrition into Oscar (which feels especially pressured given that it is crucial to good cell health and prevention of relapse), help Auden adjust to school life and cry when I need to. Laugh when I can.

Take care beautiful people and thanks for checking in on us. I know all is well somewhere outside the layers that are fogging my brain and that the fog will clear. May you and your families find yourselves in the light. x

Hospital adventures today...

Oscar has had an adventure filled day today. He had his usual blood test at Oncology clinic - except they took it by needle through the arm as last time (and many other times) his blood clotted and they had to re-do the test so they wanted to make sure he didn't have to go through that again.

Then, 9.30am renal ultrasound - he thought the warm gel they used on the ultrasound machine was lots of fun and as no one was giving him a needle he liked it there.

Then, 10.30am we headed to nuclear medicine for a DMSA. He had to have a needle in his hand that injected some dye into it. Not so keen on that but then we headed back to Dr M at the clinic and all was well with the world. Bloods good :-).

Then we had some free time to go up to the Variety Ward and visit a friend of Auden's and Oscar's from Preschool who was in hospital having chemo treatment. It was lovely to catch up (even though, of course, we wish terribly that he and all the other children did not have to be in there). He's such a brave and beautiful boy and it was a privilege to share some time with him and his amazing mum.

Then we went back to Oncology clinic so Oscar could have his three immunisation injections. Again, Oscar unimpressed but recovered quickly when the nurse opened the toy cupboard and offered Oscar one to take home. All pain magically forgotten.

Then we went to the pirate park and played and distracted ourselves until it was finally time to head back to nuclear medicine for the kidney scan. Oscar was completely strapped in for 45 minutes with the scan machine moving slowly around him.

He did good, as always but passed out about 10 minutes after we got in the car so it was a big day.

Meanwhile, Auden had his first sleep over last night and then spent the day with his best friend. He was so excited about it he almost popped and it was such a monumental help for me to just have Oscar to concentrate on.

As always, we were deeply grateful and impressed by all the staff who helped us at the hospital and especially to my friend Mel for taking such good care of Auden. He had a blast and I feel very lucky to know that he was safe, well cared for and having fun in such a loving home.

The ultrasound and DMSA are both for his urinary reflux and not related to Leukemia specifically. They are checking if his kidneys are damaged. When he had the ultrasound one kidney was smaller than the other (this was the same side that had the more severe reflux) and he is not emptying his bladder properly. What that means and the scan results will be given to us when we see our urologist next. I'll make an appointment with him tomorrow but I'm sure all will be well.

Now, me thinks it must be wine o'clock. So good to have all these tests behind us for now.

Thanks for checking in on us and take care beautiful people. x