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Lucy's big heart
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24.01.2022 Thumbs up for this kid! We are thrilled to report that the GCSF injections to boost Lucy’s neutrophils are doing the trick It was a huge relief that her bone marrow biopsy came back just showing very low neutrophil levels, which is what was expected. There were some not so nice things they needed to rule out with that biopsy, so it was a massive relief to get those results back Lucy’s gums improved very quickly and are now back to normal for the first time since A...pril. Lucy is handling the injections and frequent blood tests like a superstar and is pretty stoked that we have stopped the horrible mouthwashes. She will continue the injections every 3 days for at least another month before we attempt to stop them and hope that her levels remain stable without needing further injections. Today marks the start of Donate Life week. Please have the conversation with your family and friends and make your decision count. We are forever grateful for the gift we have been given and treasure every moment of Lucy’s second chance. Lucy has recently started pre-kindy at a very small centre that has been very accommodating and understanding of Lucy’s circumstances. It’s very special for Lucy to be able to blossom and develop, just as any other child her age would. And this is all because of a donor. Words cannot describe our gratitude. ‘Thank you’ will NEVER be enough for what you have gifted our family.
23.01.2022 Lucy’s updated Heart Beads Each bead represents a certain procedure or test such as an echocardiogram, blood test, ECG, X-ray, surgery, drain, IV line, cardiac catheter.....the list goes on. The beads are a visual reminder of what Lucy has endured and her unfathomable strength. Lucy, you are a true warrior and we couldn’t be more proud of you. Thank you HeartKids SA for running the heart beads program - Lucy is extremely proud of her heart beads
21.01.2022 heart warriors
20.01.2022 Our brave little possum had a general anaesthetic for a bone marrow biopsy today Unfortunately her neutrophils, one of her white blood cells, have been very low for a whole year now, with quite a few periods with her being ‘critically low’. We have stopped and tweaked every medication we can, even swapping one of her medications for a monthly IV infusion involving a half day hospital stay, but with no prevail. Her levels have hardly budged A consequence of having extreme...Continue reading
16.01.2022 Hi everyone Quick Lucy update As you may remember, Lucy has been having injections to help boost her neutrophils (one of the white blood cells). Before the injections commenced, her neutrophils were critically low for many months and causing some issues with ulcers and sore gums, as well as the obvious risk of having such a low immune system (not ideal at anytime, let alone in a pandemic ). Lucy responded brilliantly to the injections with her neutrophils boosting up to... be within her target range after just a few days. Her gums cleared up and she had no ulcers at all We were hoping that after a few months we could take her off the injections and her neutrophils would continue turning over at this higher rate. Unfortunately after two attempts, it appears she will be on the injections indefinitely. The last attempt ended with her back at critically low levels and she developed an ulcer the size of a 5c coin under her top lip and VERY sore gums after just 10 days. Thankfully Lucy is amazing with the injections, and an injection every three days has become a normal part of our routine. She understands they help her mouth and she’s very brave and cooperative for me to give them at home. This is on top of at least fortnightly, and often weekly blood tests. She is just incredible and makes us so proud This is all a normal part of the transplant road, lots of ‘tweaking’ to ensure her immune system is just at the right level. In the big scheme of things, this is very manageable - we count our lucky stars everyday. Due to COVID, our 6 monthly trips to Melbourne to see her transplant team have been indefinitely postponed. We will make the trip if we have to, but all going well, we will wait for it to be safe before heading back over. Overall, Lucy is thriving. She has been attending pre-kindy for a number of months and has recently started swimming lessons. All normal activities for most families, but for us, it’s so incredibly special and we have to pinch ourselves. Please if you haven’t already, have the conversation about organ donation. Register at Donate Life and make your decision known. We are eternally grateful for the gift we have been given Kate
02.01.2022 TWO FEET & A HEARTBEAT The walk has really crept up on us this year! The HeartKids Two Feet & A Heartbeat walk is this Sunday. It is a 4km walk in honour of the four lives lost to congenital heart disease every week in Australia - the leading cause of death of Australian babies. There is no known cure, and those living with congenital heart disease, just like our Lucy, face unique challenges for their entire life. Please register and join us for the walk on Sunday the... 18th of September at Glenelg. Anyone can join in for the event. If you can’t make it, please consider donating to a very special cause. Thank you https://twofeetandaheartbeat2020.everydayhero.com/au/kate-2
