Month: February 2014

Frustration is the only word that can be used for the current phase of Levi’s treatment.

While it is great being back together as a family unit again, sleeping under the same roof and just being able to hangout together without interruption. This is where Levi’s treatment is starting to get to a frustrating stage, the structured phase of the treatment has come to an end, and now treatment is guided by what is going on with Levi.

Levi is now classed as an outpatient, though being an outpatient means that we seem to spend more time on the day stay ward than we ever did when we were allowed out on gated leave!! With the planned discharge schedule of going to all day outpatient clinics on Monday, Wednesday and Friday; this seems to have blown out to the days that were considered our “days off” from the hospital.

I know that we are still in a delicate stage of Levi’s treatment, however it is hard not to get disappointed when you go into an isolation room with none of the things that kept us all sane whilst admitted to hospital. No cupboard of toys, musical instruments, arts & craft supplies or play/music therapist at our beck and call.  Not to mention trying to keep up with Levi’s medication schedule, hoping that you have remembered to pack everything in order to administer the many variations of medicines and fitting in around the medical team schedule and hope they don’t ask you to do a test that can add another 5 hours to your day….sigh. Yes the days are long and tedious and even harder to endure when you can see a glimmer of “normal” at the end of the tunnel.

The only saving grace is that we are staying on the hospital campus, I can not imagine living on the opposite side of Sydney and having to add the stress of travel, parking etc on top of a very long and frustrating day.  Especially if you have forgotten something or have finished clinic for the day, only to be called back an hour later.

I’m grateful that both boys can make the best of any situation and take the new “routine” in their stride, as long as we are together the boys seem content with their surrounds.

Well it was a bit hit or miss if we would make it to our first clinic day. Having created a schedule we have worked out that not having a fleet of nurses at the push of a button is actually a lot of hard work! Our schedule means that we have to be doing something for Levi every two hours at a minimum, and that is not even including the fluids that we gravity feed down his nasal gastric tube, nappy changes or food!!

Levi was on top of the moon having free reign of the flat and made the most of wearing a path between his toy mat at the front of the unit and the prime position of the back window to watch the emergency vehicles wizz past. Seeing him running around, we had to remind ourselves that he had recently undergone a chemo treatment and actually had a bone marrow transplant as it certainly wasn’t apparent with his increased energy levels. However it was short lived and the afternoon was made up with a 3 hour nap which gave mum and dad some well deserved respite. His German donor graft is becoming more prominent as the days carry on, there is an efficiency to the little guy that we have never seen and he has acquired a new ability to be very authoritarian around the house. We are not sure if this is to do with the German graft or the fact that he is a 2 year old and has hit that milestone in his growth.

By the time our Tuesday came to a conclusion we had managed to get Levi and Jude into somewhat of a routine, which made a huge difference with Levi’s appetite as he was more likely to eat the food that we placed in front of him when we were eating the same food. In addition, bedtime had moved from a very uncomfortable 9:30-10:30pm with various interruptions from nurses on the ward, we had managed to get both boys down by 8:30pm. This meant that we were able to take the opportunity to watch a movie which was not very successful as we both fell asleep on the couch.

Wednesday was our first clinic day and was, a unique experience. As we were now considered out-patients, everything seemed to move a lot slower and it was almost like the left hand was not taking to the right hand. As we sat in the isolation room in the day stay clinic, it was a tough endeavour with Levi not really having the required space to do his normal running around. So it was a tough exercise finding a not so destructive activity as throwing his toy trains around the bed and fortunately, starlight TV had the good sense to broadcast Rio which Levi thoroughly loved, as did I. After 6 hours waiting for blood tests to be returned, it was time to head back to the unit for the evening, however, we were not considered off the hook as we were required to make a commitment to comeback the following morning.

As we entered this week, there was still a question mark as to how long we would be restrained to our room. As the week progressed there was a rumor floating around the ward that we may be able to start taking some “gate leave”, meaning that we would still be in-patients, but able to leave the ward.  The thought itself was extremely scary as we would be leaving the safety of our HEPA filtered, positive pressurised room and taking Levi into the bacterial, fungal and viral filled world outside. The problem for me was both a little of Stockholm syndrome and a little of inconsiderate people coughing in our general direction without covering their mouths. With our continued passage through the hospital grounds this was going to be a real challenge. So the majority of the week was made up of playing dress ups with Levi and his toys as we placed masks over their faces to begin the education of having to wear a mask outside of the ward to minimise the risk of an infection, as any infection could comprise the chances of a successful transplant for up to two years. As Thursday came round, we were greeted by the doctors on their normal morning rounds and were told that the time had come, we were able to take our first day gate leave. We filled in the morning by blowing bubbles and making Lego, until we received the official clearance that we could make a break for it,though it meant that we were only able to break away for a measly 4 hours. But it was 4 fabulous hours where Levi was able to leave the confines of the hospital and see the world, which included birds, ambulances, airplanes and trees. Unfortunately the mask only lasted til the end of the corridor which meant that Levi was automatically confined to his pram with the shade cover over him as form of protection, a compromise that the nurses instructed us to do if he wouldn’t wear his mask.

When the time our 4 hours was up, Levi was absolutely exhausted as the rear of the Ronald McDonald Apartment backs onto Barker Street, which just happens to be one of the major routes for the ambulances to travel on their way to and from the hospital emergency, and Levi loves ambulances which meant the running back and forwards from the front of the apartment to the back of the apartment. The bone marrow transplant seems to have given him some form of bionic hearing as he can now hear an ambulance en-route to the hospital when they are 3 minutes away. In the interest of keeping our life even more interesting, we took the opportunity to start Jude on some solids, in the form of avocado.

Both boys sat down and enjoyed some avocado together, however, Levi obviously feeling a little queezy, decided to introduce us to a regurgitated avocado as it was launched across the apartment floor. This would have been fine as through this process we have enjoyed been covered in products from Levi’s top and tail, however this vomit included his nasal gastric tube due the sheer velocity of the projectile. So leaving the safety of the apartment, we ran the gauntlet again and headed back to the ward, looking a little sheepish with Levi enclosed in the pram, and me holding his nasal gastric tube. I wondered if they would ever give us gate leave again.
Jayde managed to break free on Friday night to go home to have some puppy therapy as we figured that once Levi was on overnights at the apartment, our chances of just ducking home would be considerable reduced from once every 3 weeks to not at all. As the photos trickled in, my heart broke as Ant’s eyes told me just how much she was missing us.

With the car loaded up, Jayde returned back to Randwick on Saturday to be greeted by bedlam as Levi was given his first overnight gate leave. I managed to fabricate a tower of side tables in order to be able to place his night feed machine and juggling his cocktail of medications for the night, I managed to get him to bed at a “reasonable” 7:30pm. By the time we cleaned up the mess, that would have been more suited to a Tasmanian devil rampage, than a 2 and half year old, I felt that a bottle of wine was in order.

Well it was one of weeks where you wonder what happened and is it really progressing?
As Sunday night came around the nurses began coining the phrase “engraftment” for those that don’t know what that means, it is basically a point in the treatment where it is confirmed that the marrow has began grafting onto the existing marrow. This is both an exciting time and a nervous time as they are not sure which marrow is actually doing the grafting. It could be Levi’s or the donors. The first indication that engraftment is occurring is Levi’s neutrophil beginning to rise. It wasn’t until Monday morning that it was officially confirmed that the graft had taken and although we were not sure whose graft it actually was it was none the less very exciting as it was progress. Levi was also excited as he had received a special present from our weekend getaway in the form of some very cool Hoot pyjamas, my only regret is that I didn’t get the matching ones so that we could have basked in Levi’s ‘cuteness’ spotlight.

Levi spent the early part of the week enjoying the arts and crafts whilst we waited with anticipation to see what his blood results would do. As it was just a waiting game I took the opportunity to launch into promoting the Jeans for Genes Day cause with my friends and family and was truly taken back by the overwhelming support and love that we received in the first 24 hours having reached 14% of our goal for fundraising. Levi took the opportunity to seek some inspiration from Oma’s scrap book before organising us for some paint therapy.

As I drove into Sydney last weekend with the two furry girls in the back I was bopping along to 2Day FM when I heard about a competition that they were running where they were giving away free tickets to the Ben & Jerry’s open air cinema at Bondi. You could almost see the light bulb flicker on for a brief moment where I thought, “wow that would be a nice outing for us away from the hospital” so it was on. I relentless took every opportunity for the remainder of the weekend to see if I could score us a couple of tickets for a nice night out during the following weekend as I knew we would have a dedicated carer for both Levi and Jude. Unfortunately the stars didn’t align for me and come Sunday night I knew that it was not meant to be. Feeling like all was not lost, I tried one last attempt to secure a ticket and sent an email though to the contact us page at the radio station. Monday came around and we were sitting at Ronald McDonald house having a cup of tea whilst Levi had a nap in his room and my phone rang… No Caller ID. As I answered the phone I thought it was the hospital calling as that is what normally appears when they call. It was not to be. She introduced herself as Zoe from 2Day FM, I did not know that she was actually a producer for the morning show. She asked for a little bit more information as to what we were doing as I had mentioned that we had been up in Sydney for a while and was looking to get away for a few hours, if only it was to the next suburb. She asked if I would be happy to have a chat on live radio tomorrow and I shrugged and said, “sure, why not”. So I was told that I would be called at 5:50am the following morning for a brief 3 minute interview so I could tell our story.

The following morning I got a text to let me know that it would need to be postponed, I was ok with that as it had been a bit of a rough night with many a beep and the equivalent door slams, so it was back to bed for at least another hours sleep. At 9:30 my phone rang, it was Jules and Sophie ringing me for the interview. Heart a flutter I sat down and took my 3 minutes of fame. Jules let me know that unfortunately they didn’t have any movie tickets to give me, and after some coercion from Sophie, Jules finally relented and let me know that 2Day FM were touched by our story and that they had organised for us to have a Friday night out. We received a 3 course meal at the Canopy Restaurant, followed by some amazing seats at the Lion King and putting us up overnight at the Metro Hotel Central in the city center….. I was speechless. Then to top it all off, they also threw in 2 complimentary passes to the Ben & Jerry’s Open Air cinema!

So last night, we took the opportunity to spoil ourselves as Levi’s aunt Kym came for a sleep over. The night was amazing, the food was sensational, the show left Jayde in tears and me with a dry mouth having spent the first half with my mouth wide open.

After an amazing night away, we felt refreshed and rejuvenated.

Although everything has been going along “routine”, Levi has still felt the need for just a little bit of excitement. It is becoming more and more apparent everyday that he is just not feeling great. His party gene has taken a bit of a back seat for most of the day and he occasionally gets a sudden burst of energy which is fleeting at best. As with all boys, when he gets sick, he is really sick and there is a craving for attention and focus on him. As a result there is little time for anything else and managing to get a break to grab some water is like wrestling with a crocodile with a pen knife. And needless to say, it is not a knife that works in this situation. So, feeling that Jayde needed a well earned break away from Levi, myself and more importantly the hospital I sent her away to the northern beaches on Wednesday. It was to be 24 hours of excitement, Levi juggling, and apparently, normal responses to the assortment of drugs that he is currently.

A bit of a background first leading into the excitement that was to be the next 24 hours. Levi’s music therapists noted my distinct fat fingers as I was attempting to play “I’m a little teapot” on Levi’s loan ukulele and decided to lend me one of their classic guitars last Thursday. As a result of many hours of practice over the weekend, I am feeling that I really enjoy plucking strings on the guitar which at the moment is literally all I am doing so I took a walk down to Coogee SunBurst music to check out their range of guitars and see what was available once we left hospital. It was one of the most surreal, and coolest experiences that I have ever had in a music store. Granted that I have not actually had many music store experiences, I will let you judge.

I walked into the store with Jude and was greeted by Doug, the proprietor. I told him my story and how much Levi is loving the music side of hospital and that I am in a bit of a pickle for when we leave hospital as I will be giving back the loan guitar and have a limited budget. Well, Doug looked at me with a big smile as his eyes peered out from under his straw cowboy hat and said, “have I got the perfect guitar for you, follow me out the back”. I was intrigued. Unable to wheel Jude any further than the front door, I asked if he was ok to be left at the counter, Doug told me that it wouldn’t be a problem and I reluctantly walked out the back. Our discussion started with a brief history of the guitar that he had picked out for me and then Doug gave me a demonstration of its capabilities. I am not sure what I was more impressed about, the sound or the longing to be able to play as well as what he could. As the guitar was thrust into my hand, I was then given a 10 minutes one on one lesson on the basics of guitar playing (as I was clearing lacking this). Feeling compelled to ensure that my second born was still safe, I ended our lesson and went back to Jude only to find the shop assistants playing sweet lullabies on some ukuleles as Jude was smiling and rocking out to their soft jams.

As the afternoon progressed, Jayde made a bolt for the northern beaches with Jude and then there were two. Levi managed to get a full service as the night wore on. NG repositioned, central line dressing changed and an evening bath accompanied by some low level mood lighting and Sarah McLachlan playing in the background. Yet still he was wired for sound and unwilling to relent to the sandman before a late 9:30pm. All was well with only the occasional da-da through the night…. Then 2:30am come round.

I was woken by Levi sitting bolt upright and coughing! I knew this could only mean one thing. With sick bag in hand I lunged across the room, failing to catch the vomit that projectiled down the bed. Now for any one that has ever smelt PeptiJunior formula, it doesn’t smell great on the way down, so coming at you from a child’s mouth, let just say, not pleasant. Then Levi decided to stop breathing as he choked on the by products of mucositis. As I patted him on the back I was torn between reassuring him to keep breathing and waiting for a nurse to respond to the call button or lunging for the emergency call button. Anyone that has a choking child will know that look that they get in their eyes when the most basic of instincts fail them. Fortunately, as I was literally an inch from hitting the emergency call button I was hit with a flood of relief as I heard the familiar gasp of air filling his lungs. A quick sheet change and clothing change, Levi fell asleep on me within 20 minutes, unfortunately it took a lot longer for my adrenaline to subside.

Feeling as though I had been side swiped by a b-double and then cleaned up by a road train, the sun was up and this meant the entourage of doctors, specialists and nurses was to begin. But Levi beat them to it as he finally had a bowel movement. I have never been so happy to see a number three as he had been holding this for close to 48 hours, which is not good for a normal person let alone someone with no immune system. So Levi started the day with another bath, mood lighting, but no Sarah McLachlan, I was lucky to now smell like spoilt Peptijunior formula and essence of chemically tainted toddler poo. It was turning out to be the start of a great day.

Sleep was going to be a luxury today. Levi felt the same as he played with his trains, watched movie after movie, coloured in his books, and hounded dad for cuddles. It was when I was given a brief respite by our ward friend that I was able to grab a shower, well actually she took one look at me and sent me to the shower.
By the time Jayde got back, Levi was extremely perky, a hell of a lot lighter and looking like his was ready to play. Me on the other hand, looked like death warmed up. Thursday night followed the previous night, though this time, I was a little bit nimbler to dodge the projectile vomit and managed to save the majority of Levi’s bedding. It was also a “poo smear free zone” which was even better for my mental health. Though the choking still threw me but I was better prepared to handle it than the night before. Nighttime is bringing a very cuddly boy who demands me to sleep next to him, so I fear that I am creating a monster with a very hard habit to break when we get home. As his white cells continue to climb in a steady trend we are resisting the urge to become to excited as the more important neutrophil have not made any movement which is the true sign of engraftment.

Levi’s counts have zeroed out!! This is exciting, though extremely scary as while we waiting patiently for signs of engraftment, this is also when things can go south very quickly.

The drop in Levi’s counts also marked another indicator of treatment with his hair starting to falling out in clumps. When Levi noticed a clump of hair on his bed, he pointed to it and asked the question “Belle-Belle?” He thought that Belle had shed her fur on the bed.

As Levi’s hair was falling out thick and fast, we decided it would be best to help it along and give him a hair cut. Lucky the volunteer hair dresser was on the ward that day and she was able to give him a buzz cut for us. Levi wasn’t particularly happy about it and was clinging to me the whole time while hair was going everywhere. Though once we were done he seemed much more comfortable and didn’t need to worry about hair falling in his eyes or irritating his face anymore.

When I showed him a reflection of himself he commented “Juju”, thinking I was showing him a photo of Jude.

To date Levi has done extremely well with his food intake, though with some mild signs of mucositis and his counts dropping, so is his appetite.

It’s obvious the chemo has altered Levi’s taste buds, as foods he normally loves are now looked at with confusion. Some foods seem to burn the inside of his mouth, as after one bite he is madly trying to remove it as if it is hot lava. Other times he just seems to wonder why the food he normally eats looks appealing, though just doesn’t taste the way he remembers. Chemo supposedly gives food a metallic taste.

This afternoon the decision was made that Levi would need some help maintaining his nutrition and a nasal gastric tube (NG) was inserted. We knew that an NG was only a matter of time, though everyone was surprised that it wasn’t needed earlier as normally it’s inserted 2 weeks ago.

An NG insertion isn’t the most pleasant procedure to witness, let alone when you are assisting with restraining your child while they are fighting having it done!! At least he didn’t remove it immediately, like he did the last tIme he had one.