Hi everyone, we got home last night after a transfusion and a dose of 24 hour antibiotics and will be going into hospital tomorrow afternoon to check Ada’s blood counts again and surgery is still planned for Monday at this stage. Apologies for not updating you all sooner, I was just too flat when we got home and just crawled into bed. We got some very bad news yesterday, our two noisy boy guinea pigs Floki and Arvid have both been diagnosed with late stage lymphoma and it seems like Arvid may not last the week (Just a word of caution: if you feel the urge to share some sentiment along the lines of pets being unimportant or their death just being run of the mill I will King Kong rage bellow at you for a full 5 minutes). To say we are just gutted is a classic kiwi understatement. In between the happy moments that we share on video and photos we are really struggling. It feels like we are Sisyphus, doomed to roll a massive boulder uphill, only for it to crush us in new ways every day.
😩Went into clinic for a routine blood test, Ada spiked a fever and now we are in hospital again.
Hello everyone, the sisters have us all run ragged today – they climb, eat, sing, dance, splash, read, cry, laugh and deal out cuddles and kisses with wild abandon and leave nothing in the tank by bed time.💜🌻👼
No go today – platelets are too low. Plan is to try again next Monday.
Hello everyone, happy mother’s day to all the moms💝 Ada and I are checked in to our room 7 on surgical ward- the oncology suite😅 Ada immediately got to work exploring the new cots. Looking good for surgery tomorrow morning, her blood counts are a bit borderline so will be rechecked at 5am, if thats all good we will likely go in around 8
Hi Guys, so the results are in – mostly positive, but with a bit of hard news as well. As some of you may remember, Ada’s primary cancer mass is next to her left kidney. The mass itself was originally wrapping around her major blood vessels and kidney which meant surgery was too high risk initially. It has responded to chemo well – it’s definitely smaller, but hasn’t disappeared. What is positive is that the kidney and blood vessels are no longer at such high risk from the surgery, and the surgical team are aiming to remove the entire mass and leave the kidney intact. The plan currently is for Ada and Janie to go back into hospital on Sunday, spend the night and then get into surgery first thing on Monday morning. The surgeons aren’t sure how long it will take as it depends a bit on the landscape, anywhere from just the morning to the whole day or maybe longer. After that, we are expecting Ada to need around a week in hospital before she can come home as it is a major op, and she’ll probably be quite sore for some time. There are a couple of less good bits of news – the spots of cancer in her liver haven’t responded as we were hoping. Because the main aim for the MRI was surgery scoping, they didn’t do a full body scan, just the abdomen. This means we need to wait longer to find out about the other sites – after round 5 of chemo they do a really comprehensive full body scan, and at that point we will review the treatment plan in light of what has responded and what hasn’t. So, in terms of surgery – pretty positive! in terms of the other stuff, it’s not time to panic yet, that’s a problem for later us. We are going to be nervous wrecks on Monday, so please cut us some slack and send some good thoughts. We’ll update if we can on Monday night, all going well. Hoping for a couple of good nights until then and a fun weekend.
Hi folks, a quick update from us – the scan went well, Ada tolerated the general anaesthesia like a champ and came back upstairs ever so slightly out of it. In terms of results, we’ve got a few more days of frustration – the surgical and oncology teams are having a meeting on Friday to go over the MRI results and work out a surgery plan, so we need to wait until then to find out what everything looks like.
In other news, we got to go home today – the girls are now asleep in their room together (long may it continue) after their first bath together in weeks, and Ada actually ate something! So all in all, mostly positive. Just hanging out for some good news on Friday 🤞
Thinking back to 25 Feb – I remember sitting with Tim in the secret staff cafe, we had just watched Ada go to sleep under general anaesthetic for the second attempt at her Hickman line. I don’t know enough English to adequately describe the fear after that first attempt had gone so wrong and we came so close to losing her, the trust we put in the medical staff to try again required so much mental discipline, but we had no other real option. We are both brains of logic, we talked about the medical stats and science, the variables and the contingency plans. It wasn’t very comforting at all. I remember reaching across the table, holding his hand and we agreed that now is not the time for logic, now is the time for hero hearts – hearts that ignore logic and odds and just know they will win, and keep fighting until the very last beat.
But hero hearts are not superhuman, that’s why they need allies like Samwise Gamgee, who will pick up and carry Frodo to Mordor if needed. We are not in a crisis, and we will never quit, but we are needing our Sam’s at the moment.
Hero hearts are not immortal either, a gutwrenching fact we couldn’t ignore today as the whole ward grieves for a little soul down the corridor who exited.
Ada is doing as well as can be expected at the moment, she is tracking ok with her temperature, so if it remains under control tonight and tomorrow morning we might be back home again tomorrow afternoon. She is still getting bouts of painful mucousitis or possibly tummy cramping from the antibiotics, but they are fewer and less intense. Her counts are on the way back up, which is also positive. Getting to the pointy end of chemo now – we’ve got an MRI on Wednesday, and just confirmed our surgery slot for next week, assuming all goes well with the MRI
Hi Everyone – Update today, brought to you by coffee
… Janie and Ada went to the ED this morning after Ada spiked a temperature overnight. It was a very hard night, in the end, a promising start that devolved into a bit of chaos by the morning. We are now waiting for Ada’s little body to fight off whatever the cause of the fever is, aided by enough antibiotics to stop a train. It promises to be another very tough night for Janie, after a couple of hellish weeks. ❤️ to Janie and Ada.