Pizza Fridays

Hello everybody, hope you are all having a wonderful long weekend! We are trying something new this weekend and swapped out, so Tim went to stay with Ada in hospital overnight this weekend and I am home with Disa. Even though we try to give each other a break in this way, we are having a hard time. Between feeling like we are in a long-distance marriage, never having time and energy to connect as a couple, and the exhaustion and challenges that come with Ada’s treatment and being in the hospital and trying to parent a toddler who is struggling with it all when you have no energy, we just feel a bit beat. Ada is having a hard time the last few days, even though she is off the pain pumps she hasn’t stopped vomiting and is on IV maintenance and will be monitored overnight.

Almost every Friday night since Ada was born we have pizza as a little family, we would try making our own or try local handmade ones or just take away ones when we were too tired. This weekend we postponed it to Saturday as hoped Ada would be discharged, and then postponed again yesterday afternoon as new complications arose. We had a tearful video call this morning as it became clear she would be in hospital tonight as well. To try to salvage some normality I ordered a pizza to be delivered to the hospital and one for home. It took Tim on the phone with the pizza delivery lady, a nurse and a nurse coordinator to get the pizza located and cleared past security, but we got there.

Sometimes in life, the little things can mean so much you can’t explain them to another adult without sobbing like a baby👼💜😭


Chemo done

Hi All, quick update from the coalface. Ada finished her last day of this round of chemo last night around 9:30pm, and it actually went closer to expectations this time than it ever has before. Still wasn’t a great night, but mostly because of standard hospital stuff rather than side effects. Ada is very tired and still a bit pukey but doing ok today. We are running low on phosphates which we’ll get this arvo, and we’ll be starting the GMCSF injections this afternoon as well. The pain pumps have been turned mostly off, so all going according to plan we may be able to get home tomorrow or Monday.


Cycle 5 Chemo update

Hi folks, update from us – Ada is probably handling this cycle a lot better than we are, heh. Like Janie said, we are both just running on empty at the moment. It seems a bit like every little milestone we set ourselves is just a little plateau on the way up the mountain – you feel like you’ve achieved something right up until you see the next cliff face waiting for you! Janie had a really tough one overnight, there was some kind of cock-up with the chemo and it started late, so the run only finished at 4am. Between managing the vomiting and the pain and just normal hospital wake-ups, I don’t think Janie managed to get to sleep at all until I arrived this morning at 8. We’ve got a pretty good handle on the agents Ada is getting this round of chemo, so we are managing the pain a lot better than last time and some of the really gnarly chemo drugs aren’t in this round. Having said that, one of them in particular that we are getting is known for being the worst one for vomiting and while the pain is much more under control, it’s still pain. Luckily we’ve been able to bring the chemo forward a little, so it’ll be running from 9am until 10pm today instead of until 4am like yesterday. Ada is alternating between sleeping fitfully during the day, periods of being a little spaced out, periods of attempting to launch herself off her bed so she can play, and sleeping fitfully at night. Fingers crossed things settle down a bit earlier tonight so Ada and Janie can get some rest. ❤️

A long way to go, but all the determination she needs to get there

Chemo, cycle 5

Hey everybody, Ada started Day 1 with incredible spirit, she handled the heavy-duty chemo like it was water, but from the last cycle we know she usually has a bit of a delayed reaction so expecting it all to ramp up tonight. Tim and I are really flagging though, we have run out of steam and functioning on fumes. Being in the hospital for such long periods by myself is really starting to take its toll too, but like being in space for too long🤪 We couldn’t do this without your love and support💜


Post-op home visit

Hi folks, just a short and sweet update today – we made it home! Ada has been healing much better than anyone expected, which is a little bit of a mixed blessing. It means she is trying to do movements that she isn’t really ready for yet, but she is muscling through with sheer willpower. It also means that we are running straight in to round 5 of chemo next week, which is a lot sooner than we’d hoped. But it does mean Ada and Janie are home for the weekend after a really tough week, so hopefully it will be a restful one.


Dial the pain pumps back

Hi folks, update from us – it was another shocker last night, but the thinking is that Ada is now waking because her digestive system is coming back online after the surgery. This is a good sign, although massively tough for Janie on her second night in a row of wake-ups every 10 mins. It does mean we’ve been able to dial the pain pumps way back, which is great and has greatly reduced some of the side effects Ada has been getting from those. She is going to start her feed again slowly today, assuming we get no vomiting in the next hour or so. For those wondering how we can tell the digestion is starting to move again, its because Ada let out a massive fart around midnight💨 which is a sound we’ve all been listening out for since the surgery….


Ada news

And now for the Ada news – she is now napping after a massively challenging night. She spent half the night in Janie’s arms while the pain team got their act together and found enough pain pumps to do the job, and then when she made it back into the bed woke every few minutes for basically the whole night. After a review this morning, we are thinking that maybe something else from the surgery is causing her wakeups and have dialled the pain pumps back a bit, so will monitor for the rest of the day. She had to have a number of meds during the surgery to control her blood pressure, and they can have side effects along those lines. She had a good play for a few minutes earlier, so is looking like she is waking properly after the surgery which is a good sign. Her op site itself doesn’t seem to be causing too much discomfort, which is great. So hopefully fingers crossed for a better night tonight 🤞 and bring on the poos which will be a sign that her organs have forgiven the surgery team 💩


Post Surgery

Thank you everyone🤗💜👼Tim and I had a very rare few hours together while Ada was in surgery. We used the time to go to a mall and have a meal together and bought a birthday present for each of the girls and some much needed pjs for Ada. It was a very pleasant but weird reminder of how different life is outside all this. We are so grateful Ada’s surgery went well, and ready to buckle down for the hard work that is recovery. Because the primary mass was above the kidney, the surgeons had to physically move quite a lot of organs (bowels, bladder etc) out of the way to get to it, and the body has a trauma response with that much handling. So currently Ada’s stomach, intestines and bladder are on a bit of a hiatus, and she has a catheter to help her while we wait for them to get back into the groove. She is having IV fluids and has a pain pump as well, but thats something we are already experienced with and isn’t much when compared to her Tower of Power with five pumps last chemo cycle. We are expecting an intense few days with most likely very little sleep, but Ada is in excellent hands here on the surgery ward and we are working with our support people from oncology as well to see what relief may be available for me, because even the steeliest mind cant do 24/7 no sleep for months. Some of this may sound negative and hard to read, but overall it is a positive result and a good start to this next tough stage🌻👼🙏