Ed's Daily Progress

Overall a Better Week than Previously

Yep it’s date night tonight for me and my little guy here at Club WestMed which lately involves a blog update.
It’s been a busy week here in Suite 4 but overall things have been more up than down with the odd drama thrown in by Ed just to remind us that nothing is ever straight forwards or easy.

The mass situated between his liver and spleen which concluded last week’s bit of a drama remains still unexplained and will do so until he has an MRI in the next week or so.
On paper and from an Oncology perspective he is doing quite well. His blood counts have bounced back as expected and it’s just his oxygen and pain requirements that are keeping him here in hospital.

His Doctors are very keen to get us all out of here so that we can have a week or so at home before commencing the next round of Chemo which in theory should be as an outpatient- temperatures and good health prevailing. At the mere mention of home Ed pulled a 24 hour stunt from 2:00pm Wednesday to 2:00pm Thursday with high temperatures, increased work of breathing, secretions suctioned from his lungs, and extremely tired and lethargic sparking a few Rapid Responses through the night. By 2:00 PM Wednesday afternoon he was pretty back to normal but was placed on antibiotics to keep any potential infection at bay.
His temp as still been running a little high for him the last 2 days but he is fairly happy within himself.

Unfortunately his pain is still not particularly well managed when he is touched or moved and they have introduced some Ketamine into the hydra morphine mix to see if that will assist. He also has a bit of a chest infection requiring him to be on oxygen so at this stage we’re staying until both of these are resolved.
Friday was extremely busy here with the little guy having a Bone Marrow Aspirate under GA to test his disease levels, an echocardiogram which is standard procedure to check his heart okay following such high levels of Chemotherapy, and a Cervical X-ray of his neck and back as he seems to be identifying some pain there.

His Doctors are still confident enough that his results from his Bone Marrow Aspirate will be good and at this stage he will not require a Bone Marrow Transplant. Whilst this is good news it is interesting to note that whilst it is very early days in terms of research there are some Lysosomal Storage Disorders (LSD) his NPC is one of these, that have been successfully treated/cured with a Bone a Marrow Transplant. Currently these have been more successful where the LSD does not have a neurological component to the disease due to the difficulty in getting blood across the brain barrier. Unfortunately it is the neurological component that is perhaps the most devastating side to NPC. As we all know our little guy is on a very less travelled road in so many ways and really it will be up to him to eventually decide which path will be taken.

In other news, Ed has appointed himself the Executive in Charge of Policy, Protocol and Procedure. Earlier in the week he suggested that one of the nurses should put some sterile gloves on before removing his Baxter Bottle from his Central line as we have to do when we remove at home. He administers most of his own medications through his PEG, including the flush, and a whiz at taking his own temperature and blood pressure. He’s very insistent on wearing his identity bands, currently there is one on each of his four limbs and bed sitters need to ensure they are up with current guidelines as to when the meal tray ( of which not one mere morsel is touched by the guy) is taken to the returns trolley at correct time.

This week anybody who came within a metre of his bed and stayed longer than a minute were very proudly show little m-peg movies of his sister skiing. These were sent hot off the press from the ski fields of Thredbo were the little cherub Isabel was fortunate enough to spend the week with her grandparents and Aunty Steph. These clips of Issy skiing were so very proudly played on repeat and there were a few times old i-Ed had these clips playing on both the i-pad and and i-phone simultaneously. The proud look on his face was absolutely priceless. Here’s hoping he gets down there next year to watch live.

It also becoming apparent that this little guy has a little something for everyone who sits bedside with him. Whether it be a favourite song, nursery rhyme, book, game toy, TV Show, or in joke. Rarely do they cross over with other bed sitters. His latest trick is to let out a big, scary roar whenever anybody from his Oncology Team, whilst those from his Pain Team are offered a welcoming cup of tea, as do most of the nurses.

The little guy is certainly continuing to win many hearts from all over the hospital including Sharon his play therapist, Roxanne and Miriam his music therapists, Clown Doctors- Dr Ding Bat and Dr Silly Billy, Felicity his Ward Granny along with several other volunteers including Lindy and Berryl, Cindy from Public Relations team and of course many of Doctors and Nurses.

Our beautiful, brave Ed. A born patient and forever the showman.

Ed's Daily Progress

Waiting for some Improvement

We are now almost 2 weeks post chemo and our little soldier marches on, more down in the trenches than up the hill. It’s been a pretty tough 10 days for him with high levels of pain, increased oxygen requirements and general tiredness, lethargy, nausea, increased work of breathing and high heart rates triggering the odd Rapid Response on occasion.

It was always going to be a tough week as his blood counts dropped and it’s really just a matter of time of waiting for them come to back up. He’s pretty much had daily blood transfusions either full blood or just platelets which have assisted in his blood numbers to increase but his general sense of well being has not really followed yet.

At the end of last week the Pain Team switched his pain relief from morphine to hydra morphine which apparently is 7 times stronger than regular. This saw an amazing improvement over last weekend and we all wanted to be on what he was- a very welcome relief to see him brighter and a happier. But once his threshold kicked in and his body metabolised a little better he travelled with much more difficulty as the week went on.

We finished late on Friday afternoon with a CT and MRI of his abdomen as its fairly large and an ultrasound the previous day indicated there had been some changes in his liver and spleen from his previous ultrasound. We are waiting on the official report on Monday as to what is actually going on with his liver and spleen as they are both organs that are affected by NPC. As always with Ed it’s difficult to know whether it’s his ALL, NPC, a reaction to the Chemo, all of the above or just a combination. Furthermore he’s always having so many tests, scans and procedures which quite often show changes that its difficult to assess whether they are significant or not. Hopefully we’ll have some more answers on Monday as to what the Doctors think are going on there.

In the midst of all this we have had some positive news which is that we are a step further away from requiring a Bone Marrow Transplant at this current point in his treatment. The results from his Lumber Puncture after the 2nd round of Chemo indicated that he had responded well to the Chemo and his body was doing well at keeping the Leukemia Cells away.
We have to wait for his body to recover from this round which may be another week or two away before they are able to re-test and hopefully continue to receive further positive results.

If the news good and they are unable to find any leukemia cells under the microscopes then we will continue for another 5-7 months of weekly or bi-weekly Chemo, in principle as an outpatient at the hospital with admissions as required when they are unwell. As always it’s difficult to know how the ever surprising Ed will respond to this type of Chemo which in theory not as intense as the past 3 months.
One of the Clinical nurse practitioners likened it in general terms to the first 2 months of Chemo. I did have to politely remind her that those few months of Chemo were possibly the worst period ever in his very short, though eventful 3 years.
Here’s hoping the rest of the year are nothing like the start.

Below are a few pics taken last weekend on his initial hydramorphine high. Looking forward to hopefully seeing some of those gorgeous smiles this week!!!