Hi, my name is Robyn and I am reaching out to find support for my incredible son Jack.
On the 9th January 2025 an immense shock came to our little family, after complaining of just having a bit of a sore neck Jack felt he could not go to work so I suggested take the day off, rest and have some pain relief.
Jack was never unwell so when 24 hrs passed and he was still not feeling well a mothers instinct kicked in and I took him to the doctors. The standard obs were done and after seeing Jack has slightly low blood pressure for someone his age the doctor gave us a form to head straight to the Hospital emergency department we never left the hospital.
They took Jacks blood, he was admitted into a room and then the next day a doctor came, Jack has AML Acute Myeloid Leukemia, the shock of this diagnosis was immediate and I tried to stay strong but Jack and I just held each other and cried we were absolutely devastated, he is too young he is too healthy how is this possible. Thus our journey began.
What should have been the beginning of his beautiful young life turned into heartache. The result of Jack's 1st bone marrow biopsy showed 78% blasts in his bone marrow it was a extremely aggressive and intense Chemo began immediately this was very difficult for Jack.
Jack seemed to be doing good in the first few days, he tolerated what they were doing and then it just went from bad to worse, shocking fevers, allergies to medications, hair loss, infections and MET team calls the multitude of medications via the PICC line which was inserted day 1. Bloods each day at 4 in the morning it was just exhausting for him, no sleep and just feeling terribly unwell.
Everyday I would visit Jack and he was just Jack, strong but weak all at the same time he never once complained or "why me" he showed me that he was so much tougher and so brave and I could not be more proud.
After 3 months of Chemo we then had to prepare him for a life saving stem cell transplant this was Jacks best hope, now his 18 yr old brother Austin has to step up for HLA Typing to see if he was a match for being the stem cell donor.
Now I have both of my children going through what can only be described as heartbreaking. As it turned out we had a miracle with Austin being a perfect stem cell match for his brother. This then takes us to the next part of the journey the stem cell transplant itself.
Austin also had to go through numerous tests and "conditioning" in order to have the best chance of hopefully being the stem cell donor and for a week prior to transplant have a nurse come and inject GCSF proteins into his stomach, it was a lot to deal with for all of us.
On 14/4/2025 Jack received the donor stem cells from his brother 5 hours Austin was on the aspherisis machine to take 120 mls of life saving stem cells, a miracle to say the least. Not only is this challenge hard for Jack it also became apparent that it was a challenge for Austin too, what he was doing for his brother is just incredible, Austin is only 18 its a lot to put on anyone's shoulders, emotions were high and it was hard. These stem cells were then taken immediately to Jack who was 6 floors above him in the cancer ward at the hospital.
Jack has endured 4 bone marrow biopsies, a lumbar puncture, numerous CT scans X RAYS Lung tests conditioning for SCT, red cell transfusions, platelet transfusions more times than we can count. We were not prepared for the difficulties he would then face after the stem cell treatment itself.
Jack was unable to eat for weeks and underwent some horrendous tests. He was unable to use the enteric feeding tube as it was just too painful and then of course he ended up with mucositis which is an infection throughout the mouth, throat and into the lungs, this was one of the most difficult things to watch as a Mum. He could not eat or sleep for weeks and the pain was immense having have high doses of pain relief of Oxycodne which was not really alleviating his pain so he was put on Fentanyl which was very high doses.
Seeing your child go through this has been overwhelming mentally, physically and financially. Jack was also diagnosed with CMV Pneumonia during his stem cell recovery as well as finding that he had a blot clot on the lung. Not only does he battle the disease but every thing that comes with trying to recover after receiving a stem cell transplant, we were not prepared for the heartache that came with this as well.
His bone marrow is essentially emptied of all blood cells to allow for the new cells to take over, it is extremely risky, so many things can go wrong while his immune system is basically non existent. It has to be done though so that the new cells that were transplanted attempt to begin a life of their own in Jacks's bone marrow and begin to reproduce life giving red cells white cells and platelets.
Whilst there is no actual cure for Leukemia we pray each and every day that things will get better. Jack having a stem cell transplant is like having a new born baby again being there to care for him 24 hrs a day and ensure that is gains weight and does not get any infections is a full time job.
100 days is a long time and we are only barely 50 days in since transplant. We are still awaiting the GVHD (graft versus host disease) which is the possible rejection which can affect Jack's skin, eyes and organs and overcoming the CMV infection and the pulmonary embolism.
Please share and support in any way, big or small as this journey will be a long one we will be forever grateful.
Sincerely
Jack, Austin and Robyn