Leanne Whelan

Last night Colton wasn’t reacting to me and saying I want mum while I was right in front of him. This morning was the same so we were worried his sight was affected. We had 2 reviews over night as he was limp, not reacting and a bit swollen. Then neurologists came in to do an EEG on his brain and look for seizures if any. Today I went into the meeting having in my mind it was the PTLD - Post Transplant Lymphoproliferative Disease because this is curable some more chemotherapy and done. That was not the case, there was the immunologist, oncology doctors and neurologists plus student doctors, social worker and student. It was very overwhelming, I’m used to people but knowing there was something I didn’t want to hear in front of so many people broke me. I try not to let people see me cry so to break down in front of so many people got me. There is a lot of white marking on the grey matter of his brain and there was swelling. They think when they found the PTLD that there may have been something else, they do not know what it is. They also told me his cells, he must have had some “playing up” have attacked my cells so they are stopping transplant. The words I heard today is “ this can be life threatening”. The plan was to give steroids and another chemotherapy drug in his spine to reduce the brain swelling then to put him back on Cyclosporine an immune suppressant to stop his cells attacking mine. Weeks ago it was all my cells! The doctors told me there was nothing wrong with my cells, he just had a couple of overactive ones. The results from the Lumbar Puncture aren’t all back yet but the ones that have come back are negative. When Colton came to this afternoon back on ward, half asleep but he was looking at me. To make sure, I put my thumb to my nose and wiggled my fingers, he gave me the brightest smile then I could see his eyes following me ❤️ We have a longer road ahead by the looks of it but you just push through, you just do it. Yes we’re exhausted but we can crash and burn when this is over.

The past few days Colton hasn’t been himself. I told doctors on Thursday before they done the N.G tube with Midazalam, they said it was more likely that he hadn’t been out much and in bed. He was still very sleepy when Steve and I swapped on Saturday. Yesterday Steve calls me on messenger to talk to Colton because he wasn’t answering him. I get on he talks to me then as I’m telling him to tell Daddy if he wants something as I was doing it he was staring blankly at me, there was no recognition of me speaking to him no reaction so I told Steve to tell a nurse we want a review. That was done the doctor wasn’t concerned. Then last night he did the same thing and his temperature went to 34.2 the nurse called for a review straight away (this nurse like many of them have known us 4 years now and she commented to Steve he’s not his normal self). This doctor was more concerned but couldn’t see anything wrong and said to call if needed. This morning the Dr Steve came by and Steve pulled him aside and got him to check Colton he said because of the notes and reviews that he would ask the Neurologist to check on Colt, they have moved the MRI to tomorrow and they will be looking at everything body with brain as well. This afternoon Colton was a bit better he had a shower and got outside for a bit but Steve said he got him out for about 15 minutes then he wanted to sleep. We are also looking to buy a car we were lucky that we were insured and it was finalised so quickly. We have $8k, we are still waiting to hear if Fair Trading will get our Ranger money back which is 22k. If we had that we could have brought a new car. Unfortunately finance isn’t an option now as we can’t work to service it. It is what it is but how nice would it have been? So if anyone knows of a reliable suv/wagon around 8k let us know x

Yesterday was Colt’s 3rd chemo treatment, still waiting on ultrasound results and next Friday they are trying to get petscan, mri and lumbar puncture done at the same time as he has to go under general anaesthetic. His hair is starting to grow back, I love the feel of it it feels so good! My car is unrepairable and is at a holding yard to get our things so something we need to organise. I’m saying that I don’t think there is much there so maybe it will have to be another loss. Still waiting to hear from Fair Trading about the Ranger, if that was settled we could use that money and the insurance from the Kia to buy something decent but again our luck isn’t the greatest ‍♀️ Tonight will be different when we win the Powerball, I’m again being positive and trying to manifest this as it’s been 5 months of no wages, 2 dead cars, 3 months in hospital already, so we need good luck and vibes Have a good day all

I’ve been home with Stevie since Friday and we swap tomorrow. Tomorrow Stevie has a rehab appointment and will need bloods before he gets his Bisphosphonate injection next month. We slept on the air mattress in the lounge room Friday night. Stevie had his first full day today so I’m home trying to get some tidying done but not feeling it. The other day before leaving hospital Colton and I played Zombies (we sit on the bed, I drive while he shoots zombies). He has been asking for a cheeseburger from Macca’s which is a challenge as he can’t eat takeaway but we have started going through the drive through while we’re killing zombies, he orders his Happy Meal, he shoots a few sneaky zombies and we drive off to eat our imaginary Maccas. Dad has been able to take him outside the past few days but it isn’t for long before he wants to go back to his room because his tummy is sore. Apparently he had Daddy up at 4am this morning and was sleeping while Dad done washing and chatted with me. He’s loving Cheese and Bacon balls but that’s all he is eating at the moment along with his feeds but they have stopped today apparently they didn’t get ordered but I’m hoping he will want more proper food.

Yesterday Colton was much better he was still in pain and a bit grouchy but very chatty we made creatures with playdoh and craft peices, and tried some scratch art. He had physio and they were really impressed with his walking she said she thought he might have problems walking but he done really well considering he was in bed over a week. Today he had his second treatment, new tape on N.G tube, swab and the dressing on his central line changed. We played on the floor for a bit, made a couple of cardboard models, made bubbles then he had school. That tuckered him out that he went to sleep. Sally his toy dog went missing so I brought another toy dog he wasn’t impressed but I found one the exact same as Sally she is waiting on his bed for him to wake up. His feeds went up to 10mls today he is still not eating but the doctor explained it is normal and the chemo kills their taste buds it will improve later. Thanks all for being our support we appreciate you all x

What a week! Colton needed a lot of procedures done it was over 2 days because he went under general anaesthetic, he had a levage on his lungs, ct, MRI, lumbar puncture, a sample taken from the lymph node then it was removed, a bone marrow extraction and a few more things I can’t remember. Colton has PTLD - Post Transplant Lymphoproliferative Disease from EBV (Glandular fever) it was attacking his B cells but because transplant went so well my T cells are helping fight it but he needed Rituxib a chemo drug. First treatment was 6 hours but the next 3 will be 2 hours the first was so long because it can cause side effects. The next few days he was very lethargic and in a lot of pain in his neck and back. Saturday I came in and he was still very sleepy but yesterday he talked his Dad’s ears off and today when we swapped he looked much better. Still waiting on more results and he will be on steroids for a few more days.