Sometimes no news is good news, other times its just because it’s all too tiring. The 2 week delay in post is the latter and I’d have to say that I think the last 2 weeks have been perhaps one of the rougher rides on the road to date, mainly because we’ve all been so tired.
There was a change in plan straight after my last post as his Doctors decided to commence his Chemo on the Monday, which is almost a fortnight ago. The idea was to get moving on the Chemo whilst the going good, get him out for a few days whilst he was well and wait for him to bounce back in as his blood levels dropped. A good plan but as we all know our little guy is on his own program.
The days immediately preceding the Chemo were quite good for Ed. For the most part he was bright, bubbly and his pain reasonably well-managed.
We were discharged last Friday afternoon in the hope that we would all have some quality family time together at home. So after almost 10 weeks in hospital with very few gate passes our fun loving little party guy was discharged from Westmead and within 3 hours found himself at the St Kieran’s Kindergarten Hawaiian disco at Wannabees. For those not familiar it’s one of this crazy indoor play centres which also has some great rooms for kids to play dress ups- http://www.wanna-bees.com.au/aboutus.html
What a place for our first full family outing in a few months.
The weekend at home was difficult to say the least. Aside from the regular medications to be administered
His pain was barely managed and he found it difficult to sleep with the poor little guy waking every few hours through the night. Not only did this effect myself and Pete, but Tom and Isabel were also being woken through the night so that by the end of the weekend Pete and I were wrecked, Tom had a barking cough and Isabel 2 massive cold sores.
On Monday we returned to the clinic for some more Chemo, but unfortunately his bloods were too bad and he required both a full blood and also platelet transfusion. His bloods also indicated he may have some Pancreatitis which would be causing the discomfort in his stomach that he had been complaining about over the weekend.
Throughout the day in clinic his Doctors were deliberating over whether to admit him due to his bloods and pain levels. I also found it a little disheartening to hear from 2 doctors separately from our team that they were surprised to see we had made it through the weekend without a re-admission.
The decision to re-admit him came just after 6:00pm a time I have since learnt when there are no Doctors around to arrange the admission. This meant a trip through the Emergency Department for clerical processing where I’m sure you can imagine my tolerance level at explaining to an Emergency Doctor the little guys complex medical issues starting from whether it was a normal pregnancy, if he was born at term and whether he was a vaginal or delivery or c-section. All of this pales into significance in comparison to the eventful 3 years this little guy has had medically.
Needless to say I have written a letter to the Governance Unit asking them to look at this current policy as it was a pretty ridiculous situation.
As the night in Emergency wore on the little guy was improving and began to fire on all cylinders. At one stage he was so well I was wondering whether we should head home and catch up on some sleep but his temperature was on the way up.
We ran into one of his old Oncology Doctors, Josh Steadson who was now working in ED and still had Ed’s birthday present in his car which he managed to give to Ed on the night.
All in all we spent 6 hours on a Resuscitation Bed whilst I explained the full details of Edward’s complex medical issues. After explaining his NPC combined with his ALL to the admitting Doctor she had a tear in her eye and absolutely astonished at his diagnoses. Whilst I think we all agree it’s astonishing I’m sure you can imagine this was an unnecessary and tiring task at the tail end of a difficult weekend combined with 8 hours in clinic and not really what we needed.
Despite all of this Ed was in full party mode when we made it up to The Clancy Ward ( not our regular Oncology) just after midnight and was pulling all his party tricks with his Medications, PEG etc. If you’ve seen it you’ll know exactly what I mean. His Temperature did hit 38 which meant those hard hours in Emergency were worth it as we would have bounced back through anyway. Despite being in a 4 bed room, with an unattended crying new born baby I did manage to sleep for 6 straight hours, the most sleep I’d had in 3 days. Sweet, kind Ed also found the unattended baby very distressing and asked me many questions about where the baby’s parents, grand parents and friends were.
On Tuesday they found a type of Streptococcus bacteria infection, on Wednesday a Staphylococcus bacteria infection and by Saturday the Pancreatitis that had been simmering away for the week was out in full force with the levels they use to measure this (lipase) 4 times more than they had been earlier in the week. Anybody sensing déjà Vu?
I think I mentioned in a previous post that I was told by one of the Clinical nurse practisers that this block of Chemo is similar to the first block of Chemo. She meant that most kids tolerate fairly well, but in our case it is all starting to look very similar to the first with weeks of severe sickness and pain. There is one Chemo drug, peg asparaginase which does list Pancreatitis as one of the side effects.
He was due for his Chemo tomorrow but I dare say his Pancreatitis will delay this, which will now be by a fortnight.
With the exception of his first bout of Pancreatitis I think Ed’s last 2 nights are up there as possibly the worst he’s ever had- doubled over in crippling pain clutching at his stomach saying “hurting me, it’s hurting me”.
With his pain relief doubled Ed is now having a lazy Sunday catching up on some much needed sleep. Poor Ed but also his poor God mother, Ange and Father who have had a night each with him and are both now desperately trying to catch up on their sleep without the assistance of double morphine or ketamine.
Happy Fathers Day to the very amazing Pete. The guy who despite all that is going on in our family life has finally got his Exercise classes up and running in the last few weeks. Below is the very buff Tom testing out the gear in his Dad’s new exercise Clinic, including a new piece of exercise equipment designed by Mr P Sharp himself.
And a final good bye from the recently returned snow bunny who told me last night that when grows up she’s only going to have 2 children so that it’s easier for everybody when one is in hospital.