Blog Levi's Blog

One step back…

After a long week of outpatient clinics we were looking forward to the weekend; Nan & Pop were coming for a visit and we were really enjoying our own space, so we were craving some more family time at the RMH apartment.


Friday’s clinic had revealed that we wouldn’t get the entire weekend away from the hospital, as they were worried with how Levi’s levels were looking, even though physically he was doing well.  We were told we would need to come in for a blood test on Saturday and Sunday just to make sure his levels weren’t doing anything too strange.

On Saturday morning Nate & Levi did the quick trip up to the ward for the blood test and returned 2 hours later with all squared away for the day.  We were getting ready for lunch and looking forward to hanging out for the rest of the rainy day, only to be called back to the ward…


The blood test revealed that Levi’s potassium levels were quite high and they thought that the test may have been compromised, especially in comparison to tests that were done the day before.  They weren’t willing to admit that taking a prick test from a little boys finger who had just eaten banana had anything to do with it, so they collected blood from his central line this time to be on the safe side.  While Nate & Levi were up on the ward for the second test they had also off handedly mentioned to “Get comfortable, as your staying on the ward until we can get Levi’s levels right.”  Apparently Levi’s electrolyte levels were also at extreme ends of the spectrum, so with no warning we were admitted back onto the ward.  This is where the fun began…

Since we were admitted on a Saturday it meant that all our files were in a unobtainable compactas somewhere and it was as though the areas that made our lives easier didn’t know about us anymore, even though we had only been discharged from the ward 4 days earlier and spent over a month on the ward!!  The nurses and doctors didn’t seem to be on the same page, asking us to do the same tests that had already been done and forgetting basic BMT protocol.  Pharmacy wasn’t able to dispense any of our medication, that should have been common to any oncology ward?!  The kitchen were not accommodating a post transplant diet and the formula room was unable to prepare any of his overnight feeds as they didn’t have adequate notice, none of this was sorted out until Tuesday!!

Nate was ready to spit the dummy when the doctor decided to request a clean catch urine sample just as Levi was getting ready to go to bed. For anyone that doesn’t know what a clean catch is, it is basically mid-stream. So Nate spent the majority of his evening ‘patiently’ waiting and failing to negotiate with a 2 and a half year old to pee into a jar. At around midnight, he had managed to capture it as it shot into the air like a fountain. The nurses were extremly impressed with Nate’s nimbleness to bound across a room and catch the mid-stream, I can confirm that Nate was far from impressed with the whole situation.

The frustration didn’t stop there unfortunately… The isolation room we had this time was not the usual room used for post BMT patients.  Which meant that majority of the staff on the ward seemed to forget why we were in isolation and we had to be vigilant, as the door was being left open quiet often, staff were not using the specific hand sanitizer before touching Levi or his own equipment i.e. thermometer.  The room itself was quiet unloved and not as nice as the usual BMT room that we called home.  Poor Nate had to endure a fold out bed a quarter of the size of his last one and spent more of the night falling on the floor than sleeping on the mattress.  All the decorations, toys, favorite food and things that made Levi comfortable had to be brought back up and there was no storage or food hatch.  We were extremely grateful that we were staying on the hospital campus at this point as there was a well worn path between the ward and the apartment retrieving all the things that we should have had access to on the ward.

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Blog Levi's Blog

In or Out?

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.

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We have hit zero

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.




Blog Levi's Blog

Filling the gap

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.

Blog Levi's Blog

Waiting Game

Waiting, waiting, waiting…

We are all waiting patiently for Levi’s white blood cell counts and nutra fill levels to drop to zero. Once his levels have bottomed out only then can they stop the chemo and let Levi’s levels come back up and start looking for signs of engraftment.

Levi is still very interactive and playing, though does tire every easily as his counts are dropping.





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Puppy Therapy Day




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Life is Boring

Levi might not have an immune system, though he is doing well.  The medical team has prepared us about all the things that could happen over the next few weeks and to date we haven’t seen those side effects, and hope that we don’t.  In a medical sense, things are boring, routine and unremarkable.  This is a time in our lives that we are excited to be “boring”.

One remarkable thing happening at the moment is that Levi is still eating relatively well.  The medical team are surprised that Levi even has an appetite, let alone a desire to eat, as at this stage of treatment the majority of patients have a nasal gastric (ng) tube to assist with daily nutrient intake.  Levi’s taste buds have changed a little; with his current preference being for sweet foods that are soft, as his mouth seems to be tender.  Though his go to food is still a firm favourite and makes me question if he was transfused with a monkey, as he is enjoying a minimum of 5 bananas a day!!

Levi’s hair is hanging in there and only thinning slightly, though he had a thick mop to start with so if you didn’t know he was having chemo you would be none the wiser.

He is getting more cranky as his blood counts are going down, though it’s hard to figure out if that is the treatment or if its just him being a 2 year old.  His counts are taking a little longer to drop, though they said that is because his marrow was “healthy” prior to treatment and it’s to be expected as his chemo was a less intensive.

We have our fingers crossed that life continues to be boring, routine and unremarkable for the many weeks and months ahead of us.

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Blog Levi's Blog

Day minus 2

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!!


Blog Levi's Blog

A Modern Day Superhero

Tonight on the other side of the world a superhero is giving an amazing selfless gift, he is giving my baby boy the hope that he could live a CGD free life.

To the healthy 26 year old German man who’s bone marrow perfectly matches Levi’s in every possible way, I’m in total awe at the wonderful donation you are making. You are probably prepping for a painful surgery as I write this, for a little boy who you don’t even know and a family who are overwhelmed by your generosity.  I can’t thank-you enough.  We are looking forward to contacting you in 12 months time, to thank you personally and let you know how much our healthy little man is thriving because of your gift. Thank-you, Thank-you, Thank-you!!

Blog Levi's Blog

Day minus 3

It’s amazing how many people “work” for Levi, he has a cast of what feels like thousands working tirelessly for him to make sure he is happy and comfortable during his treatment.  There is not a part of Levi that isn’t considered during this process.  Yes there are those we see on a daily basis, his nurses, doctors, dietician etc, though there are also many in the background analysing Levi’s vitals, blood cultures and medicine levels ensuring that all runs seamlessly.

Let’s take today for instance; once the doctor’s do their rounds with their teams in tow (nurse, clinical nurse consultant, dietician & pharmacist), the day is filled with all sorts of visitors all vital to Levi’s wellbeing.  This morning we had the Physio pop in and work with Levi to make sure he was physically not losing any condition and doing the normal things you would expect a 2 year old to do.  Next his social worker came past to introduce us to his ward granny, a volunteer designated to helping us out and support the family by playing/sitting with Levi or taking Jude, as little or as often as required.  The play therapist also popped past with some art & craft supplies; though they also will help Levi through any procedural phobias he might be having through play.  All the while his room has been cleaned within an inch of it’s life, food has been delivered and taken away and the nurses continue with routine observation and administration of medicines.  Life on the ward is busy, even in isolation and that was all before lunch!!

This afternoon it was Levi & Jude’s favourite time of the day, when the Music therapist pops past for a jam.  Both the boys love signing, dancing & playing musical instruments in extremely creative ways.  Today Levi thought the best way to play a ukulele was by placing it on a 45 degree angle, driving a toy fire engine up and down the neck along the strings onto a drum.  It definitely made for some interesting sounds.

Today there was some added excitement, when one of the lumens on Levi’s central line stopped working.  This concerned us a great deal as we had a bad experience with Levi’s last central line, which required quiet a lot of attention and failed 3 weeks after being inserted!!  Given that the central line administers/monitors all of Levi’s medicines and level’s, we were quiet anxious, as we hadn’t even made it to transplant day yet and it looked like we were loosing a line!!  We were assured that this is routine and to be expected, after 8 hours of trying every trick in the book, the blockage in the lumen cleared and we all breathed a sigh of relief.  So it looks like we will make it to transplant with 2 working lumens…hooray!!

Many thanks to all those people who help to make Levi’s life comfortable both directly and indirectly, you all work so hard at what you do and we appreciate it more than you know.