Just to clarify – the one with the possible side effect of ‘death’ also has anaphylaxis and heart failure listed as possible side effects, although all of them are in the ‘rare’ column
Ada’s first transplant is set to start on Monday, and it is going to be an entirely new level in this marathon. Monday we will be busy with all the preadmission checks and tests, Tuesday we start 7 days straight of really intense chemo combinations, the aim is to completely wipe out the blood counts. After that, she will receive her own stem cells back, and we sit around and start the horror show that is recovery.
On average the process takes 6 to 8 weeks, although it has been done quicker, so we are preparing for a month minimum of intense hospital stay. We will be in a special unit with only the same 4 people allowed in (and a few of her medical team).
Throughout this period we know that all your support and love will help keep us going, and we will be eternally grateful as always. But just want to give everyone a heads up that we will be intensely stressed and fragile. To explain it better we decided to depart from our usual policy of keeping a lot of the horrific details to ourselves, and share just a small insight into what we are dealing with… for some of the drugs, the side effects include “death”. Just plain death. Not the usual preamble like anaphylaxis which could lead to death, or heart failure which could lead to death… just death.
Now don’t get too discouraged, the team at Starship are the best equipped and experienced in the country, and they have a pretty good track record, they are watching everything so closely and ready to jump all over it if something starts to come undone. So, at present, we are optimistic, sleep-deprived and frantically trying to plan things and prepare…but if that changes and we become blobs of rage and fear, just be a little patient and don’t take it too personally, we will always have nothing but love and gratitude to you all💜🌻👼
We got Ada’s results on Friday. Her scans show some areas have had very good response, but there are a few active metastic disease sites left in her eye sockets, liver and pelvic bone.
She started with a Curie score (based on active metastic sites) of 19, and is now down to a 4, which is a lot of progress and we were really happy to hear.
However, historically with scores of over 2 the prognosis is not as positive. But we are remaining hopeful as Ada is on a new trial protocol which should offer better results than previously available, and there are cases where kids have gone through with similar scores and done well.
The best treatment option is still to do the two rounds of bone marrow transplant and then do radiation, now in 5 sites instead of one.
We are honestly scared of what radiation around the eye socket area will mean for her vision and other possible nerve damage, but we are shelving that for later as the next Big Up for us is the transplants. More on that later. So it’s not the worst news, but it’s certainly not what we were aiming for and brings a new wave of challenges.
Hello everybody, apologies for the delay in updates – our incredible streak of bad luck continues… We struggled with food poisoning for 5 days, and just as we started to get better Disa came down with a bad cold… so no rest for us on our “time off”😵 We all had to get Covid Screening, all negative results, but had to self isolate until 48 hours after last symptoms, which looks like it might be Thursday or Friday, which is making preparation for transplant quite tricky. Sometimes our life feels like a comedy of concurring tragedies.
Hey everybody, Ada is having her MIBG scan right now under general anaesthesia, but I thought we can all enjoy this happy snap of her mimicking birds in the park yesterday. Yesterday was a marathon of tests, but we were able to get home late last night and be sleepless in our own beds👼 We will do more tests Monday and Tuesday, and then should have all the results on Friday to see whether there has been improvement and plan the next stage of treatment. So far we’ve had a bit of good news, Ada’ echo showed her heart is strong enough to continue treatment🙌 And some bad news, Ada has lost some of her hearing due to the previous chemos, which is expected to get slightly worse and then stabilise. She will need a hearing aid in future, but that will be sorted after treatment. For now we’ve decided to start learning Sign as a family, so anyone with any good resources or tips on that please speak up💜
All the cultures and tests so far remain negative for anything sinister, although they will continue to be monitored for the next few days in case something grows. Ada will stay on antibiotics until she is no longer neutropenic, which is a few days away for her and is also frustrating because it gives her an upset tummy and having skin breakdown again as she needed one of the dreaded urine baggies. Thanks to a tip from one of our new friends on the ward we asked for a big bed for Ada, it means she can sleep next to me (sometimes the only way she will sleep if things get really bad) and I can feed her easily. It does make her look really tiny though, and she is just loving playing with all the fancy bed remote controls🤦♀️ It looks like our scheduled tests will go ahead this week, but we will confirm over the next day or so and then do an update. Wishing you all a very good night and thank you for all the love and support❤
Next on Ada’s treatment schedule was a full day at clinic starting early Thursday morning, with audiology, echo, GFR hourly blood tests all day and ending with an MIBG injection at 8pm, then back on Friday morning for her MIBG scan under general anaesthetic. The next Monday and Tuesday we had MRI scan under general anaesthetic and bone marrow aspirate under general as well. We were just busy preparing for a full on few days in preparation for bone marrow transplant round 1, but we’ll have to see how this affects the timelines.
Hello everyone, Ada and I are still in hospital, she’s had an ultrasound of her kidneys which didn’t show anything too worrying but we are still investigating a few possibilities as her bp and kidney function are still not stable. Good news though, since switching the formula we use to supplement she seems to be doing a bit better, she is still exploding with every poop but is happily doing so, and not so much vomiting and even had some time in the play room today💩 She is very busy practising her Dr skills, this week focusing on blood pressure👼 As news got around the ward that Ada’s perking up we had a few visits from staff, and Ada pulled out all the charm. Later one of the nurses told us that cuddling and playing with Ada is providing a much needed boost for everyone as there was another loss on the ward last week. A bittersweet day🌻
Hello everyone thank you for all the support and messages❤ I’m sorry we are slack with replying individually, we try to reply in a private message but are a bit scattered at the moment so don’t always get to it in a timely way.
Tim and Ada had a hard weekend, its always really depressing to see her so sick and the lack of sleep really gets to you after two days. After my break with Disa, I am ready to go back in, even though I didn’t really have any more sleep than usual but at least it was in a real bed.
Ada is still in hospital and will likely be here for the next few days, her vomiting hasn’t eased up and her blood pressure is consistently high. It’s a bit abnormal for chemo effects to last this long, but we are troubleshooting with the oncology team and if it’s not much improved by tomorrow I will probably ask the surgical team to weigh in as well, so in summary we have another difficult night ahead but we have a plan we are working to. Wishing you all a great week ahead💜🌻👼