Help Carmyn fight Leukaemia and walk again.

Carmyn’s Story

On May 9th 2023 Carmyn’s family got the news that she had been diagnosed with Acute Lymphoblastic Leukaemia (ALL) and she started chemotherapy right away. It was then discovered that she was Philadelphia Positive (a mutation of the Chromosome 22 of the Leukaemia cancer cells) which dramatically changed the course of her treatment. She had 7 long months of intense chemotherapy, long hospital stays and a number of Lumber Punctures/ Bone Marrow Asperasions she was getting to a point where her chemo wasn’t going to be as intense and she was going to able to get back to some sort of normality but on Friday the 22nd of December 2023 Carmyn was taken into the ER by her mum in the early hours of the morning feeling a bit off after a day of chemo and slight discolouration on the right corner of her mouth, she did not show any other signs of concern but something didn’t feel right. Once in the ER she went to the toilet and collapsed which is where things started to spiral very quickly (for anyone with medical knowledge here heart rate was 180, her blood pressure was 56/39 (45), her respiratory was at 70, her Oxygen was at 62% and her lactate was 16). She had gone into (cold) septic shock and was quickly put into and induced coma and intubated then rushed to PICU where they monitored her for a few hours but later that day they made the decision to put her on ECMO (Extracorporeal Membrane Oxygenation) and dialysis as a last chance to save her life. It was made very clear to us that her chances of survival were very slim and if she did make it through there was a very high possibility that she would likely lose some of her limbs. After days of searching and every antibiotic imaginable the doctors in PICU found the source of the infection which was Ecoli on her central line which she had inserted to give her chemo and take her bloods during her Leukaemia treatment. She miraculously came off ECMO after 5 incredibly long days with the blood flow to her limbs still flowing although she did have some severe pressure wounds and gangrene in certain spots but she would no longer be on life support. Unfortunately she was still not in the clear as she spent over 11 days with a temperature above 40° and no clear reason as to why. The oncology team and PICU staff did every scan imaginable to find the cause but never really found anything of concern so they opted to give her a few big hits of steroids which managed to bring her back to a safe temperature. However since steroids can stunt the healing process her stitches from being closed up after ECMO popped and once in theatre the Cardiac Surgeons discovered that the wound was necrotic all the way through but fortunately it had not reached her sternum so they decided to remove the nectrotic tissue and VAC seal her wound to safely draw the skin back together after another 2 open chest surgeries to check and clean the wound they stitched it all back up and closely monitored the healing process. On top of this she had serious trouble with her breathing and ended up with her lungs collapsing at different times and her skin was so sensitive that one wrong move would tear her skin. Which meant that due to the severity of Carmyn’s condition and her immense pain the PICU physios were limited with what movement they were able to do for her body and unfortunately the deconditioning in her legs had left her unable to walk or bare any weight on them on top of everything else. After 54 days in PICU she was finally discharged and sent to the ward on the condition she used a CPAP machine over night to help her lungs.

Once on the ward Carmyn continued to fight hard every single day with her daily rehab and the hospital staff did whatever they could to relieve her of the severe pain she was experiencing from to the nerve damage in her legs, she celebrated a late Christmas and her 13th birthday in hospital and after 91 days/ 13 weeks she finally got to go home to see her family.

Unfortunately this was not the end of the fight for this poor little girl as she had to stop her chemotherapy which resulted in the PH+ in her marrow increasing and left the oncology doctors unsure if she still had the original diagnosis or if it was now CML (Chronic Myeloid Leukemia) but what we did know was that she was going to have to have a Bone Marrow Transplant. She got a small stint at home, going to the hospital almost daily for Rehab, Oncology check ups and all the necessary specialists reviews she needed for her BMT but also getting to enjoy some time with her family and bestfriend she was finally feeling like she had found a new normal but had the lingering “WHEN” hanging over her head as to when the BMT would go ahead.

On the 18th of June 2024 Carmyn was admitted into hospital for her BMT. Starting with 6 sessions of radiation across 3 days followed by 5 awful days of chemotherapy; one of which requiring her to have a bath 4 times a day (5am, 11am, 5pm and 11pm) for 4 days straight which is hard enough for anyone but was made even harder by her immobility and one in particular drug called Atgam that had her getting a visit from the PICU doctors and a room on hold as it hit her like a truck and lastly her transplant which is actually very anticlimactic but fascinating all in one. After Transplant day Carmyn became even worse and ended up with severe mucositis, HSV throughout her body, intense stomach pain and persistent fevers. She pushed through every gruelling day the best she could but she slowly started to show signs of Graft Vs Host Disease (GVHD) which displayed itself as an incredibly itchy rash across her entire body. Fortunately her GVHD did not progress beyond the skin and the oncology team are still trying to keep the rash from reforming but she will be forever at risk of rejecting her bone marrow. Carmyn will now hopefully do most of her Leukaemia treatment at home with hospital check ups 1-3 times a week.

However the journey to see Carmyn walk again is going to be very long and painful process. She has had some amazing AFO’s (Ankle-Foot Orthosis) made for her to help her walk in the mean time but she is going to need to start doing serial casting to help start bringing her foot down from the high point that she has at the moment but unfortunately the orthopaedics and physiotherapy teams don’t believe that this will completely fix her feet and eventually she will need to be operated on. However due to her BMT she will be unfit for surgery until at least 12 months post transplant which means we will need to do everything we can to try and bring them down or potentially fix them without surgery.

Now to the reason we are all reading this post. My name is Annica and I am Carmyn’s mother Mikaela’s bestfriend and someone that Carmyn considers an aunty and the mother of her bestfriend. I have been a part of every second of this journey they have been on, from the sore arm that turned into her original diagnosis to her heart stopping trip to PICU, I have watched their family fight and struggle through everything. I have watched the emotions of a mother not seeing her babies and siblings not seeing each other, I’ve watched Mikaela and her partner Tim go weeks without seeing each other, I have seen Imogyn (Carmyn’s 4 year old sister) and Byron (Carmyn’s 11 year old brother) struggle without their mother and sister and Mikaela has not once asked for any assistance or help to help cover any of her costs throughout this whole process except for asking people to keep Carmyn in their thoughts. So now it’s my turn to step in and ask for help for them. Please help give this incredible family some financial freedom from all their hospital expenses and allow them to fully focus on Carmyn’s rehabilitation and get her back to living her life to its fullest.