Boxing Day Rant (Merry Christmas - Part 3)

My apologies to all, but there are things I've been wanting to get off my chest and having yet had the chance to do so.

As has been said earlier, Karli and I have both hit the wall. I was hoping that an early start to my holidays and our break down in Busselton might change that, but as yet we aren't perking up too much. For my part, I have been on the verge of tears at the drop of a hat over the past week. Whether it's the extra time and space to think, or the more intense time being spent with my two babies, I don't know. I do know I don't feel particularly refreshed, and am unsure that much will change during my last week of holidays.

Our little boy is battling along. He's ratty and clingy again thanks to the steroids. Unfortunately he is also dealing with the side effects of the methotrexate, which he hasn't had for a while, and has never had intravenously. So he's a bit more lethargic and unsteady. It's nice to have so many cuddles though. The hard part is trynig to figure out what is going on for him. I'm sure he must feel really crappy, but he just can't say anything.

It was good to see some of our friends in at PMH on Wednesday. We talked to the parents of the little girl who was admitted around the same time as us. She has finished most of her treatment for now and is coming in every month or so for blood and urine tests. She looks so good now. Her hair is growing back and she has put on a heap of weight. It's lovely to see her looking better. The little guy only 2 weeks older than Oliver was able to go home for Christmas for a few days. He still needs regular antibiotics injected, but the home nurse will be doing that. Unfortunately he will be back in on Monday for daily radiotherapy. Hopefully his treamtment is coming to a successful end in the next month or so. It was lovely to see the mum and daughter who were in the room when we were initially admitted. It was heart breaking to learn that, after having completed treatment for a relapse, she has relapsed again. I couldn't believe the beautiful and genuine smile I got when I said hello to the little girl. She is amazing. And our ever present friends from Mandurah were still there, trekkiing back and forth from Ronald McDonald House. I don't think they have been home for any reasonable length of time for about 3 or 4 months.

"I cried because I had no shoes, until I met a man who had no feet". You may have heard this little proverb before. It kind of sums up my mindset. I find I waver between mourning the plight of my little boy and rejoicing for the way in which he is overcoming it. I want to be positive, but there is always a little voice in the back of my head reminding me that the tough part may be coming to an end, but the road ahead is still long. In the midst of my negativity I summed up life in two sayings.

Life is never so bad that it can't get worse.

You might be doing it tough, but someone else is doing it tougher.

Not the most cheery sayings, but they keep me on the cautiously optimistic side of life.

Probably not as much of a rant as I first expected, but I'm tired, and I'm off to bed. Some very cute photo's and video to leave you with. I really should be more optimistic.

Walking with my trolley in Busselton

Cuddles with mum in my monkey towel

Bathtime with dad

Cute cheeks

Opening a present from Uncle Gordon, Aunty Tarn, Tyran and new baby Jyden

Merry Christmas - Part 2

I was supposed to write last night but didn't manage it. This is the second part of my Christmas entry, the less joyful part, so be warned it may get a little negative - and could be a little disjointed too. Part 1 was written last night and is a little more upbeat.

We were back in PMH yesterday. Oliver started cycle 6 of his treatment. He received some methotrexate and vincristine, and we started his home doses of mercaptopurine and steroids last night. He could get pretty clingy today, but I think I might be in the mood to just hold him.

You might remember Karli mentioning that we had both hit the wall - thus the reason for me beginning my holidays earlier. I'd like to be able to report that we are both re-energised and have been positively charged over the past week and a half, but we are both still flat. I'm not sure what it is. It doesn't feel right for it to be about Oliver's cancer since he is handling treatment so well, all things considered. Admittedly, there is likely to be some background stress related to it, but given what I know other parents are enduring, I feel like I need to take a toughen-up pill and enjoy my child's health. I think that I might be slowly finding the time and space to process the past 6 months. Some of it is bound to be the fact that we are here and not in Canada as I had hoped this time last year.

Ooops, Christmas just started. There will be a part 3.

Have a lovely Christmas. Give your loved one's an extra tight hug.

Merry Christmas - Part 1

This entry will be written in two parts. This is the joyful part.

I love Christmas. How else do you explain my Christmas vest and flashing santa hat? I love this time of the year. I love shopping for presents for everyone. Secretly I feel a little ripped off by doing Kris Kringle/Secret Santa with the Tate family because I don't get to buy and wrap as many presents (but of course it's not so easy to buy for everyone anyway, so that's a good thing). I like looking at the lights and decorating the house. I like the t-shirts everyone wears, and how everyone seems to be a little bit more cheerful - I suspect that people are actually like this most of the time, it's just that they are allowed to be more jolly at this time of the year. I love that people are more generous. I love seeing the looks on children's faces as they talk about Santa and what they would like for Christmas. I love that some semi -random stranger came in to the hospital today (he was a father of a cancer survivor, and a cancer survivor himself) and handed out extremely generous gifts to sick children and their families. I love that Dr Angela wore a flashing santa hat. I love that PMH was decorated long before our house even got sight of a decoration (except for the ones I had left up from last year). I love the story that goes along with Christmas. I love that my eternity was too precious to be left up to me and so I was shown grace by the birth of a small child. At this time of the year, I'm like a child in a toy shop, and if I am actually in a toy shop, I'm worse. I wish you a very merry and joyful and loving Christmas. May the day fill your heart and remind you of all that is good, and may you have a safe, healthy and fabulous new year.

Cooler Weather

It's a cooler day in Busselton today. It rained this morning and is now blustery. I like it this way. It's much more conducive to reading and writing, and a lot easier to keep Oliver comfortable in.
I went for a jog with him this morning. Despite my job, I'm not really fond of running for running's sake. I prefer to chase after a ball of some sort. So I really have to keep pushing myself. I found that I really just wanted to walk. It was all a little too hard and painful. And I thought, how soft am I. How dare I say that it's all a bit too hard given what my little boy, and many other children, are going through? I've often wondered if I would have the strength to endure what they endure, and often doubt I would. Needless to say, I kept running. It was my own little bit of suffering, for what it was worth.

Ch-Ch-Ch-Changes

Not that I'm a fan of the song or the band, but it seemed and appropriate way to write the title. Much has happened in our little world over the past week, all of it positive. Let me set the current scene. I am sitting outside the Tate family (Karli's family) park home down in Busselton. Karli is off for a walk and our little man is sleeping soundly in his room. On Wednesday, Dr Marianne gave us the go ahead to wander down this way with the assurance that they work very closely with the Bunbury Hospital and she would have no reservations with them rendering some assistance to us should we need it. needless to say, by the time we got back home we were already sorting things out and were packing the car first thing Thursday morning. We will be back for Wednesday. The reason for our pass was because Oliver's neutrophils had been high for a while (highish for a child with cancer and undergoing chemo) and since he didn't receive treatment on Wednesday, he was probably in the best place to safely go away somewhere. So here we are. Not all is well - Karli did wake me up at 5.50am to tell me she was going for a walk. I can only put it down to the cool sea and country air.

On Wednesday we were informed that the study that Oliver is on has been suspended due to an unacceptable level of toxicity in patients on Oliver's treatment arm. This sounds bad, but what it means is that the benefits they were seeing from giving the vinblastine weren't enough to justify the side-effects. This means that Oliver skipped his treatment Wednesday (he was due vinblastine) and will now begin his next cycle Christmas Eve. He will be moved back on to the standard treatment arm and since this is the start of a new phase, there will be some other changes.

At the moment, we have been told that because of Oliver's size, he is not due any more doxorubicin as was first thought. Initially we were told he needed to meet a minimum accumulated dose, but this doesn't apply because Oliver's dose was calculated per kg and not by surface area like some of the larger and older children are. Because he is not receiving vinblastine, it also means he won't be receiving weekly treatments, so he will only be receiving chemo for the first 5-6 days of every 3 week cycle. That is very exciting. We will probably still need to take him in for blood tests each week, but that's no big deal. I suppose that will mean I need to make a decision about what I will do with work as well. He will still need to have his magnesium and fluconazole each day, and his bactrim each weekend, but it would seem that things are getting a little better.

Merry Christmas to us.

Positive vs Negative

It is Sunday morning and on my walk yesterday I was thinking about writing on the blog and wondering how I would entitle it, as it turns out the day got away from me and Simon beat me to it last night. I read Simons entry this morning and was amazed at just how positive it was and I told him so, he said 'Oh I forgot that I was going to write that we had both hit the wall and that is why I am on holidays a week sooner than I had planned'.

So this is where we stand - EXHAUSTED! I am so grateful for Simons wisdom, last weekend just before we went away he said out of the blue I am going to finish work a week earlier and I was quite surprised, but encouraged him in it and as the week went on I saw the wisdom in his decision. Oliver finished steroids almost a week ago, but this is always an exhausting time, this time especially because he is wanting to be walking but unable to do so on his own, made even more difficult by the cast he had on his arm, not to mention the fact that Oliver has had a cold now for 2 weeks and I dont see it going away anytime soon as what does he have to fight it? I found myself wiping his nose every 5 minutes, picking him up regularly and bending over helping him to walk - its no wonder I couldnt stay in bed this morning when I got the chance as I had a sore back.

I was reluctant to leave our child in this state to go away and in fact made the decision to cancel it just a few days before, but both Simon and I seemed so flat after I made that decision and I knew we had both been looking forward to it and that we needed the break and to assuage my guilt, I told myself that we would be better carers for having the break, which is true, although after only being back a couple of hours, we felt like we needed to go away again. Nanna & Grandad did really well although Sunday morning was particularly tough as Oliver got them up at 5:15 and then would not go back down for a sleep until 10:30 when we arrived home. I then felt that Oliver was a bit toey for the next few days, crying when we put him down or when he saw other people and I couldnt help wondering if he thought we were going to leave again? We think this is why he now screams his head off when we try and put him to bed at Nanna's, he kept it going for an hour the other night, even with reassurance from us, although because he has been unwell he hasnt really slept much anywhere else, so it could also be that.

During steroid time I found myself taking Oliver out because it seemed far easier to deal with him in the car or in his pram, where he was content than his constant neediness at home. Needless to say come Tuesday afternoon I had a sore throat and felt exhausted. So much so that Simon took Oliver to the hospital on his own Wednesday and I got some extra bedrest.

So our plan for this week is to rest. Simon has agreed to look after Oliver more so I can go back to bed or do the relaxing things that I enjoy - reading, watching dvd's & doing crosswords. My concern is that Simon too is exhausted, so I have asked him to let me know when he needs a break and perhaps we will do half days each.

We did have good news regarding Olivers treatment on Wednesday and that is that they are postponing his Christmas Eve treatment to New Years Eve, which is a relief, otherwise we would have been dealing with a steroidal monster on Christmas Day. Christmas for us looks to be fairly relaxing, which is just what we need, the 3 of us will spend the morning together and then head to Mum & Dads for lunch with a small number of family as opposed to the giant family bash at our place last Christmas.

So what do I look forward to? I look forward to winding down and relaxing more, to spending family time with my husband and my son and I do look forward to celebrating Christmas. The one thing I have found that comes with winding down is the grief and for me I am finding that it comes in waves. Speaking of waves, Oliver has learnt to wave and he was waving at the rubbish truck the other day and I felt overwhelming sadness that my innocent little boy is battling cancer. Then last night after getting angry with McLeods daughters for killing off Alex and leaving Stevie devastated and shedding a few tears for her, I then found myself going to check on Oliver and sobbing myself. I find that the first emotion I feel is anger and then the sadness and the tears come. I ended up going in to comfort him as he was unsettled and had tears all over my face and this super loving little boy who gives the 2nd best cuddles in the world after his Daddy, gave me a big cuddle, then sat back in my arms and was looking me in the face, touching my face, almost like he was wiping away my tears, putting his fingers in my mouth also, which caused me to giggle which then led him to giggle. After I put him down the real sobbing began as I wondered how this little boy who has been through so much can be so loving.

So this might be more than you bargained for in reading our blog today, but this is the raw truth as I like to tell it. Two positive things that I would like to share is that on those hard days last Monday and Tuesday, my Dad came and took Oliver for a walk in the pram to give me a break which was great. The other thing is that we have been going to a biblestudy group with people from our church (Whitfords) and it is a place where I feel like we belong. We were due to go there for the first time right before Oliver was diagnosed, so they have been praying for us every step of the way. We had our last study night the Tuesday before last and we all shared how the year had been and I valued being able to share openly and honestly with this group of people and hear their stories. We then had a bbq together last Sunday and again I felt so loved and welcomed by these people whom I dont know very well as we only managed to make it to biblestudy less than a handful of times.

For those of you we will not see, please have a safe and Merry Christmas and we look forward to venturing with you into 2009.

Lots of Love
Karli

Long Time between Drinks

It's been a while since I have written on the blog. I finished up work for the year today and am looking forward to a few weeks off. I'll kick off again in the new year. Karli is currently enjoying watching her favourite program - McLeod's Daughters. Needless to say, I'm not as keen on it.

Our little man is sleeping soundly. He began the last cycle in his consolidation a week and a half ago. While he was on steroids Karli and I headed off to celebrate our 10 years of marriage and left him at home with Nanna and Grandad. We had a lovely night off, and he seemed to handle it fine, and Nanna and Grandad too. He does seem a little dubious about whether or not we are around at night though, and is not at all keen on going down at Nanna and Grandad's. Hopefully we will be able to sort that out this week with a few trips down the road to play at Nanna's and lot's of kisses and cuddle's from mum and dad.

He had his cast removed on Wednesday. Without it he has started to lift himself up onto his feet and to climb a couple of stairs. He is also much more mobile on all fours, and is spending a lot of time walking alongside the couch. I'm hoping that by the time I head back to work he will be running us ragged. We've had a few trips to the hospital the past week to have his nasogastric tube reinserted. We hadn't been in for quite a while, then he decided to start at it a couple of weeks ago. Actually, the day after Karli's last entry, while I was still down south, he pulled it out, so you can add that to Karli's rough day while I was away.

Christmas isn't far away - as if you didn't know. We are steadily building up a pile of pressies to wrap for our little man. I'm not sure he'll know what's going on, but I'm excited about seeing him surrounded by toys and wrapping paper on Christmas day.

Standing up against his gift from Santa at the Kids Cancer Support Group Christmas Party.

A quick photo before heading back to PMH to have his NG tube reinserted.

We discovered that our little man hasn't finished with the doxorubicin. He needs to get a certain amount during the course of his treatment, so it looks like we will have more of it on the way. It's probably not that much of an issue given that it doesn't seem to affect him much any more, but it will be nice to have it taken out of his regime eventually.