Jinxed

It's official. Dad is hereby declared as being jinxed when taking Oliver to the hospital without mum.

In an effort to let Karli have some time off today, I offered to take Oliver in to the hospital by myself. We briefly joked about my being jinxed, since both times I have done this before Oliver has returned with a cast, and then had to have his port removed. "Ha, ha," we spoke in jest. "What else could go wrong?" In order to break the suspense, in short, Oliver's port isn't working - again!

We got to the hospital parking area and headed off to get a coffee and some breakfast. Oliver amused himself with his toys and some crackers while I briefly flicked through the paper as I ate a bacon and egg sandwich and drank my coffee. We then headed in to the hospital. From then it started to go downhill. First we upset Oliver by putting some EMLA on his port site. EMLA is a topical anaesthetic cream that is used to numb the port site so it doesn't hurt when kids are needled. They don't use it on kids younger than 12 months because they are so upset at being held down that the stab hardly registers. But Oliver had seemed to be responding to being run through, so it was decided to put some EMLA on. We had also avoided it because usually it is kept in place by a piece of tegaderm, which causes much grief when coming off. We tried a different strategy of using a non-stick dressing with an elastic 'garter' thingy. Needless to say, taking Oliver's shirt off in the hospital usually results in a fair degree of complaint and protestation. Upset already and it was only 8.45am.

next I asked about bloodwork. In recent times all bloodsd have been done on the ward so the kids don't need to go near the building site next to the pathology lab. Lucky I asked.
"Haven't you gone yet?" "
"No. I haven't been given the form."
So up to pathology to have the boy's finger gored and milked of it's precious fluid. Fortunately we were the only ones in the waiting room.

Back down to the ward for my 9am appointment. Weight and length were taken - 12.05kg and 76.5cm ~ 50th and 5th percentile respectively. Then a walk to get the boy to snooze while we waited for the doctor to see us. At 10.10 I had an idea that EMLA is only supposed to be on for 1 hour, so I headed in to let a nurse know how long it had been, and hoped to remind them that I was still waiting to see a doctor. It worked, they got on to a doctor within the next 30 minutes. Then it was off to get needled.

Oliver wasn't happy about being held down, but he didn't seem to feel the needle. EMLA works apparently. Well, we couldn't get the port to bleed back - strange I thought, although I wasn't 100% happy with the way it was inserted and dressed. It was decided to give fluids to get it flowing before trying again.

The next 2 hours weren't a whole lot of fun. Oliver was very upset. Not happy in my arms, not happy in his pram, not happy with food, not happy to play. Makes for a bit of a stressful time, especially when you are ina room with 6 or so other patients. Nobody likes a screaming baby.

After an hour and a half I decided I'd had enough and unplugged his drip from the wall and went for a walk to the kitchen to heat up his lunch. Of course, he fell asleep by the time I had finished, bless him.

So I sat on the cot and rocked his pram in the same day care room. Some poor little soul started screaming after waking up from a GA. Fortunately the boy slept through it. When he woke up he seemed happy enough, so he sat and played while I gave him his luke-warm dinner. the nurses soon returned to check on him and prepare him for his chemo. Apparently they were having trouble in the chemo room, thus the long wait. Well, the boys port still didn't bleed back, he was none too pleased, and it seemed to be swollen around his port site. In fact, I'm certain I could feel the striations in his muscles - not normal for one so young. So the needle came out and a dressing was put on to soak up the fluid that was leaking out, and we trotted up to get an x-ray to check it all out. What a difference having the needle out and letting fluid drain from the body rather than get pumped in makes. I had my little boy back. Happy, settled and cute as a button.

Back on the ward the x-ray was in and the plan was laid down. The port's catheter had flicked up and so wasn't draining down to Oliver's heart. In fact, it was going up to his little head, against the flow of blood, and into smaller blood vessels. I suspect that this meant that all that screaming was due to a bit of a head ache. It is also the reason why fluid began to leak out of his port site even while he had fluid running in - the result of a difference in pressures. The plan is for mum to take him back in tomorrow to have chemo under a GA, since that's the only way to get a canulla into him with comfort for all. And that's the way it will be done for the rest of his treatment. A GA every 3 weeks until the final one on 1st July. Once Dr Kikiros is tracked down, we will have a date for his port to be removed.

So, that's that. Thank goodness that things are getting easier towards the end of his treatment - not!

Now for some positive news. We saw Dr Angela today and Oliver was able to display his walking prowess. I'm so proud of what my little man has achieved in his short life. We also saw some of our friends today. Michelle, the young 12yo girl with the same cancer as Oliver was in for a checkup. She finished treatment in February, and had to have a lumbar puncture to test her cerebrospinal fluid today. She was a stage IV, so it was in her CSF when she started treatment. She looks great. Happy, no nasogastric tube, and her hair is coming back. It was so good to see her. I can't describe it, but you could see that she wasn't drained. During her treatment you could see a deep tiredness behind her young eye's, despite the beautiful smile on her face. Now there's a sparkle returning.

And the beautiful little Ava was in for a checkup. She also looks great. Smiling, growing, beautiful hair, and just so bright and bubbly. She turns 1 in 3 weeks, and we are looking forward to celebrating with her, although Oliver will be on treatment.

Unfortunately, I met another family with their first baby, a beautiful little 11 month old daughter. In a months time, around her first birthday, she will hopefully undergo a bone marrow transplant. They have a donor and it looks like it's full steam ahead. Thankfully, Oliver hasn't needed such treatment, but I know it isn't an easy path to tread. Please keep this family in your thoughts.

In random news, I have started to listen to John Denver. It makes for quite an ecclectic mix on my ipod - John Denver, Kanye West, and Nickelback. And I'm probably heading back to uni in July. An update to follow.

That Time Again

We're back in tomorrow for the 4th last treatment - hopefully. I thought you might like to see this video. It's been a bit tough to get him to perform on demand, so I had to sneak this one.

Fed Up - Karli's Version

Hello Everyone

It's not that I think Simon's take on being fed up is inaccurate, but I thought I would like my voice to be heard also and probably more because I have had such a crap day & evening. Since Saturday Oliver has been very demanding, miserable and wanting regular Mummy cuddles, on Saturday I think I had some superhuman energy and I buzzed around doing all manner of jobs and I wasnt bothered by Oliver's neediness. Since then it has grown tiring, the poor little fellow has been miserable for 3 days, regular whinging with snippets of play in between. Do not be fooled, there has been smiles and an occasional chuckle, but nothing like the little boy we normally see.

Tonight, he cried from the moment I got him up, changed his nappy, fed him dinner and only stopped crying once I gave him sweets. I had already been teary this afternoon because I was fed up with it all, but seeing my little one so miserable, it didnt take long for the tears to spring to life once again.

Oliver has recently taken a shining to the moon (pardon the pun) and will point out the window, wanting to see the moon. This is very cute and we are constantly amazed at his intelligence, from having seen the moon a couple of times to grabbing hold of that and wanting to see it regularly, however due to daylight saving, he is asleep before the moon rises, a little disappointing. But he seems satisfied with Mummy & Daddy's answers of the moon is hiding behind the clouds or the moon is sleeping - arent children adorable?

It seems Oliver's side effects have capitulated this afternoon, in sweats and an itchy neck - possibly caused by excess sweating. He had his last dose of steroids tonight, so from tomorrow things will start to settle down.

Well we have managed another cycle, only 4 more to go. I feel at this stage it will only be the grace of God that gets us through, for we are well and truly fed up, as is our little man. He is sick of mouth care, screams when we try and do anything with his neck and cries most of the time when I am changing his nappy. I messaged a friend today saying that I was angry with God and she said well it would seem odd if I wasnt, our life wasnt meant to be like this.

I admit to having doubts of late as to Gods goodness as I watch my son suffer through chemotherapy. In the beginning I clung to God, feeling I had nowhere else to go, now I am angry that we are going through this in the first place.

The saving grace this evening was a delightfully delicious Shepherds Pie made by my husband, I admit that he does most of the cooking these days and he does a fabulous job of it! Last night we had steak, with a mushroom gravy, mashed potato, mashed sweet potato with spinach & honied carrots - Yum! I look forward to a cuppa and some chocolate this evening. I imagine it being Easter and all that I might not be the only one indulging in a smidgen of chocolate or more. I wrote in an email before the weekend that I hoped everyone had the chance to reflect on Jesus over the Easter weekend and I confess to not even having read over the Easter story.

Well this is me, warts and all, I appreciate your listening ear and your encouraging comments to let us know that you are following our journey.

Thank you for your love and support.

Lots of Love

Karli

Fed Up

So we spent Wednesday and most of Thursday in at PMH. Oliver's new port went in without a hitch. In fact it went in quicker than expected. Dad came home at about 2.30 to have a quick nap and fresshen up before relieving mum for the night. While I was gone he had his chemo for the day and was then moved out of room 7 and into room 6. Despite the fact that we had lovely room mates in room 7, it was nice to move into room 6 and have our own space, and a bed for me to sleep in. Unfortunately I didn't sleep much in it - we had many annoying visits from the nursing staff during the evening, more than seemed necessary with a little bit of forethought and planning. But I'm not a nurse and don't know what's going on over the other side of the fence. Oliver finished his mandatory 24hrs of antibiotics by 9.30 Thursday morning, and so I had hoped we might be home by 10.30 or 11, allowing me to get in a quick nap before heading to work. No chance. We left in time for me to have a quick lunch and shower, and then jump in my car in time to make it for my first client. I then had to return to PMH after work to collect some bits and pieces that had either been left out of our take home pack, or left behind in various fridges.

We've come to the decision that all 3 of us have pretty much had enough of Oliver's treatment. Oliver seems to be a lot more reticent to be given his meds and other bits and pieces, and you can tell that he is frustrated and agitated at the moment - no thanks to the steroids. Karli and I are over the meds, the bottom care, the mouth care, the neck care, the constant watching for things that may indicate somethings awry.

Our little man was very whingey today - more than I remember him being. The heat doesn't help, pretty much making us house bound for most of the day. Tomorrow doesn't look like it's going to be any better, in fact the forecast is for hotter weather than today. If he's up to it I might try and get him down to the beach for a little bit in the morning. Thankfully he still sleeps through the night.

Life As A Parent

This is a common sight - Oliver stuffing some sort of food in his mouth and loving it.



He wanted to get the bird, but the rusk in his mouth was gone before he got very far, so he had to come back to refill.

It has been a strange week. The Thursday before the last one (does that make sense?) we headed down to Albany to spend some time with Oma and Peter, and to catch up with some friends. We had originally planned to take all of last week, but with the little hiccup with his last treatment, it didn't seem right to take too many more days off work. Our time away was lovely. Karli caught up with some friends, and Oliver enjoyed roaming around Oma's house and garden, frequently requesting a visit to the chookpen. Oma also bought him a Thomas the Tank Engine ride on train that he can push and play music with its buttons. Needless to say he thinks it is fabulous. Karli and I were also able to catch up with Trent and Michelle, who have moved to Denmark with their 3 little boys.

I forgot Oliver's trolley when we went to Hyde Park. He improvised.

Over the last week we have watched as our little man has done new things that have both amazed us and encouraged us in our parenting. Karli has taught Oliver how to say please using sign language, and he is slowly beginning to use it when communicating with us. Similarly, he is able to nod yes and shake no, and we are able to decipher some of his 'words'. He is becoming much bolder and steadier on his feet, though we are still waiting for him to walk properly. He is also becoming more sure of what he wants, which makes for some interesting moments. Kisses and cuddles are becoming much more deliberate, and he has become firmly attached to his little sheep - Shaun (Sean, Shawn, Shorn?) It won't be long before his trolley becomes more of a hindrance than a help, and then we will be in trouble. At least we can hear him coming at the moment.

So our week with our little man has been full of joyful and heartwarming moments.

Unfortunately, our week has also been coloured by the sad news of an old friend. During my last few years as a teenager in Albany, as a member of the youth group at Albany Baptist Church, I used to hang out with a fairly tight crew. Early each Saturday morning Rob, Dale, Stu and I would go out surfing. We spent some great times together, and one of my most memorable experiences involves Dale, Stu and I being towed behind Rob's Hilux on a tarpaulin. The surf wasn't great that day. Dale and his wife were supposed to be celebrating the birth of their new little boy, Tayne, this week. Instead, they are planning his funeral for next week. Mum's placenta had become detached and the little guy was born with very little blood. He fought bravely for a few days, but passed away on Tuesday.

Though I haven't seen Dale for years, and really don't even know his wife, the news was heartbreaking. Maybe it was because we found out what was going on on Sunday, and in some way watched the tragedy unfold from a distance. Maybe I hoped that it would all work out.
I know I feel terrible for not going in to just sit with Dale on Monday night when we returned from Albany. Maybe it's because we had to consider the possibility with our little boy too, but thankfully avoided it (the tough little bugger). Of course it raises for me all those questions I asked before, that were never really answered, but somehow became less significant over time. All I know is that it sucks. Too much pain for too many people, and one little baby boy who knew nothing else. I hope that in it all he was able to know the love of his mum and dad.

Sleep peacefully, darling Tayne. The fight is over.

Dale and Bridget, our thoughts and prayers are with you so very much.