Tag: Levi

Today was filled with a little more excitement than anticipated. It started out as any other day with our cast of hundreds doing their rounds and then it happened, Nate utter a few little words that turned our world upside down for 24 hours, “My ear is blocked”.

Now a blocked ear might sound harmless enough, though this morning he had also mentioned a scratchy throat, so putting those two symptoms together spelled eviction for Nate from the ward until we knew if he was infectious or not.

It might sound a little extreme, though when you are on a ward full of immunocompromised people, you really cannot take any risks.  Something as minor as a sore throat could be detrimental to someone with no immune system.  Though in saying that the positive pressure of Levi’s room and air-conditioning of the hospital play havoc with your senses and you are constantly left wondering if you really do have a sore throat or if you are just suffering from pseudo symptoms, the later always subsides by a quick visit outside for some fresh air.

While Nate ran around trying to find a doctor to clear his name to allow him back on the ward and most importantly back into Levi’s room.  I sat tight with Levi and Jude, hoping this wouldn’t be the start of a very long shift in isolation with both boys.

Our ‘Ward Granny’ Michele started her first day with us today.  The title ‘Ward Granny” might be a little misleading, as Michele is quiet young and doesn’t have a zimmer frame so we have renamed her our ‘Ward Friend’, which she is much happier about as well.  Michele and Levi enjoyed their first official play together and Levi really enjoyed having someone else to hangout with that wasn’t trying to assess him in some way.

With Nate having no luck finding a GP willing to check him out, we were lucky that we had prearranged for Angela to take on a nightshift.  Staying the night in hospital is a big ask under normal circumstances, though especially tonight when an emotional little man was missing his Dad, and now Mum was also leaving him too.  Though it didn’t take Levi long to embrace his new overnight guest and they partied the night away.  Thanks Ange we are grateful for all your help!!

It’s now pushing 10:00pm as I write this and I have had about 4 hours sleep since 4:30am yesterday. Every so often I hear the faint murmur of ‘daddy’ from Levi’s bed. I have done some tough things in my life like sailing the bass strait twice on a tall ship, hiking 75km through Patagonia with a bad case of gout and jumping from a perfectly functional aircraft but I have to say that I would take any one of those right now. It is only day 6 into a minimum 110 day process and Levi is loaded full of chemo and far to young to tell me why he keeps murmuring my name. It is obvious he is in some level of discomfort but he doesn’t know how to tel us where it hurts. Frustration is the first word that comes to mind, but it doesn’t cut it, if I had a thesaurus I would probably still struggle to find the words that describe my emotions let alone Levi’s. I fear that it will only get harder as he receives his next lot of chemo in a couple of hours and then another lot at 6 tomorrow morning.
Overall it was not a bad day today, no sleep made it difficult to function but at least we were able to make a break for it and managed to get some much needed vegetables into our system. One thing that as parent, you nearly always neglect yourselves as you put your kids first. In short, what good are we if we can’t look after them, because we lack the core nutrition to sustain us during the day let alone sleep. Speaking of sleep, Levi managed to get a decent amount during the day which sort of made up for his lack overnight as he received a bit of an unpleasant surprise overnight during a change. Chemo is one of those drugs that you don’t really want unless you have to have it, and even then you really have to evaluate the benefits vs risks of taking it. Well I didn’t really think that it would turn a toddlers bum red raw so when I went to change him just after midnight it was almost as if the wet wipe that I was using was coated in acid as he shot out of bed screaming and it was almost like he crawled up the wall in pain. This didn’t help me as I was half asleep and had no idea what I had done so after a quick page to the nurse it was apparently a normal reaction to the chemo and future nappy changes would require a thick coat of zinc to sooth the “discomfort”. The highlight for Levi today was that we finished decorating his room with photos of his two dogs, Ant and Belle. It was amazing to see his face brighten as the photos went up to the point of wanting to have dinner with them followed by a couple of episodes of Thomas and friends.

The side effects of the chemo are becoming more and more apparent as we watch his food intake decrease daily and his energy levels becoming more sporadic. Maintaining a positive perspective from our point of view is also difficult on no sleep and crap food but two thing keep shining through these murky waters and that is that we have amazing friends and the knowledge that Levi will get through this.

Today was a routine day. With an exceptionally early 4:30am start to the day Levi was wired & ready to go. Just when you thought he was ready for a nap, he would muster energy and not just over tired energy, out of control freight train kind of energy. Obviously chemo hypes Levi up!!

It was a good day full of play, food and some quality family time. Levi is loving making games out of all the medical equipment, today the purple gloves were a hit.

Thanks to Zoe & Lucas for sending Levi an etch a sketch, he loves it.

I woke this morning before Levi which was a nice change as it gave me the opportunity to take 5 and just watch him sleep under natural light rather than the light from my phone. It was one of those rare moments between a father and son that reminded me why we are doing this and filled my heart with a kind of warmness. It was a sensation that is hard to explain but all I can say is that if you have ever experienced it, you know what I mean, and if you haven’t experienced it, then I can’t wait til you do.

I managed to retreat back to bed, just as he awoke and there was a moment where you could see in his eyes that he thought he had beaten me to the point again, until he realised I was starting at him which gave him a smile that could have contributed largely to global warming. It was on. By the time breakfast had arrived, we managed to play with his trains, build a block tower that surpassed his bed and sing every song that i know (in my defence, that is not that many). He was obviously feeling better this morning after a good night sleep and not realising that I had managed to rescue him from a face forward caterpillar crawl from his bed at around 1am.

By the time Jayde and Jude had arrived, Levi was in full form and his morning activities were followed closely by some quality time with his brother. When Angela arrived to give us an hour away to grab a coffee, Levi was in a great position for his morning nap in order to face his third round of chemo all refreshed. By lunch the chemo was in full flow and yet again, Levi was eyeing off the food shoot and not so subtly reminding us that his lunch had arrived sometime ago and demanding that it be served to him in not so many words, Again he strived to eat his way through this chemo session with me in constant fear of wearing what he was eating. Fortunately there was no need for a chuck bag asides from storing his toys in and pretending that he is an elephant with it.

With no remarkable temperatures and normal observations, Levi managed to get through session three, so there must be a lot of positive energy out there.

After a fairly restless night on the ward with Levi tossing and turning from some pretty bad dreams I woke at 6 am with Levi tapping his pillow and echoing “Dadda”… I was up from my bed and squeezing into Levi’s bed where he snuggled into me for another 30 minutes. When we eventually woke up there was the wonderful sound of the breakfast tray being delivered in the food chute (a cupboard that separates us from the outside world, I liken it to one of those little doors that you see on the movies that have prison scenes). Today was going to be a good day.

After polishing off all of his breakfast our team of doctors came in for the morning progress brief. We discussed in detail the events of yesterday and there was still a level of concern on Levi’s high temperatures and a requirement for him to maintain a preventative course of antibiotics as an infection from this point onwards could prove fatal. I was given the third degree as to why Levis feet had not graced the ground since we were admitted and in my defence I was not aware that he was allowed to run around the room let alone stay attached to the machine and several thousand tubes that are attached to his central line. SO once they had left we cracked out the circus tent, a gift from Jayde’s aunt and uncle Barbara and Frank. This was a definite hit with Levi immediately setting up shop in the tent and bossing me to laden it full of all of his toys. Fortunately after an hour of this play I was relieved by Jayde and was told to take some time, as in her words, I looked like crap.

After some brief respite it was off for chemo round two. Now for anyone that has gone through this already you will understand what this means, and for anybody that has to go through this my heart is with you. But to see the effects on a two year old that is unable to tell you what they are feeling or how it makes them feel, it is hard not to become emotional for the little people. My Dad constantly says to me that when it comes to kids having to go through this, that he wishes he could take the pain for them, those words hold so much meaning when you look into their eyes and see what this whole process means to them. Day two of this was marginally better for Levi, though it had the possibility to go south quite quickly with the build up of chemo accumulating in his system. It became apparent that Levi was looking to eat his way through this whole process and we can only hope that he continues to do this. With the nurses questioning us if what we writing on the whiteboard was actually what Levi was eating, the little guy had managed to pack on a kilo in just 24 hours and this time he was refusing to throw up.

After his dose of chemo, he was set on staying up to play and demonstrate to the physiotherapist how mobile and flexible he is, which pushed him past his rest time. So we had the luxury of an extremely tired Levi, with a double dose of fernergan under his belt, which ultimately equalled a very very very grumpy and inconsolable child. After close to an hour and a half, Jayde finally managed too put Levi to sleep using some ancient child whispering technique and we were not far behind him.

Bone Marrow Transplants (BMTs) are great if nothing happens. Friends that have been through this process often wish that we have a boring transplant with nothing exceptional happening as they are the best ones to experience. It takes a little to get your head around that concept but when you start thinking about it, boring in a hospital context means “routine” and “routine” means that it just happens normally. Today, unfortunately was not “routine”. It started off with the kitchen forgetting that Levi was a patient at the hospital, but once that was sorted, it was looking up. Levi had a full tummy and normal observations, Angela came in to relieve us and we were able to make a quick escape in the real world for some fresh air and warmth.  I was even able to grab a couple of hours of “catch up” sleep as the night duty is already taking it’s toll. Then Chemo started….

The first few days of chemo will see Levi getting a particularly harsh drug that they expect adverse reactions with, so much so that they keep a nurse in the room during the 2 hour administration of the drug.  It was a little rough though he managed to sleep through majority of the treatment. He woke at the tale end of the treatment and decided to demonstrate his projectile abilities as he wasn’t a fan of the vomit bag.

Fortunately Jude was happy to entertain himself in his cot with the occasional squeal for his mum to poke her head in, we are just so grateful that he loves his toes.

It was only when his first round of chemo was finalised that he decided to record a temperature above 38 degrees, which is the magic number which makes any medical professional nervous when they see that figure in a patient with a central line having chemo. So it was 30 minute observations for the little guy for the rest of the day. In the later part of the afternoon Levi was much brighter, we managed to secure some Play doh and a wooden train set from the Play Therapist to try and make the side effects of the Chemo more bearable for Levi and it seemed to work.

At around 8:30pm Levi’s temperature dropped into the low 37’s, his breathing, heart rate and blood pressure all began fall back into the normal range. Blood culture were taken and it will be around 48hours before we find out if it was the chemo or an infection that caused the abnormal spike. So far Levi is one for one in his chemo treatments and although I would say we are not looking forward to his second round, he is trooping through the process.