Leanne Whelan

The past couple of days have been rough on Colton. Walking and standing put him in a lot of pain but all day yesterday he kept complaining about headaches more than he usually would saying his brain is melting. Yesterday the plan was to decrease his steroids and pain meds but because he was in so much pain yesterday after walking they increased his Morphine back up yesterday afternoon. Last night we had a review because he was always in pain his head, his tummy, abscess and back was hurting and he was quite tired during the day. This morning the doctor has put him back up a dose of steroids thinking it might be brain irritation from the swelling. I did have to ask though if the HLH was back she doesn’t think so and told me B.K virus was getting weaker from less steroids. The tummy is common post transplant plus his appetite is being driven by the steroids plus getting feed via his N.G tube. The back could be because he has been in bed such a long time. He has been so tired and sore he’s been refusing salt baths to help drain his abscess yesterday and today for me so hopefully he will for Dad as we swapped again today and I’m so exhausted from him being in such pain hearing him and trying to help him feel better and not being able to. Today he was in pain and sleepy but less than yesterday so hoping the steroids fix it.

Colton’s past few days have been very chaotic. He needs salt baths daily to help heal the abscess on his bottom, he is having intense rehabilitation to help him learn to walk again and he did 48 steps today with his walking frame. Steroids are going down slowly but he’s waking up at 3am most mornings hungry expecting Nuggets and chips ‍♀️ We are getting out in the stroller but it’s not long before he wants to go back to bed. We may be getting a gate pass in the next few days to see how get home will go. There was talk of stem cells to cure his BK virus but he needs to be off steroids first. Nathan went into the funeral home’s care last night, there was a huge stuff up from the police again they were the ones who gave the coroner the wrong middle name and address. Still no news except I’m being pushed to do a statement but they still haven’t told me what the police did or didn’t do that night or why there was no body cam footage and was told when I done my statement the detective would show me some footage. I received a text yesterday saying she couldn’t. Where was the conduct and integrity of the officers that night? Still no date for funeral as yet and still haven’t heard back from the Law Enforcement Corruption Commission after putting my complaint in.

Colton is doing well. There is still a long way to go, he can’t stand but is moving his legs. He has an abscess on his bottom, right near his anus the plastic surgeon has been checking on it. The plan is for him to have salt baths to drain it instead of them during surgery and leaving him with a bigger scar. Colton has been talking and eating non stop he is up and down most nights and we have been getting him out of room more but it isn’t long before he gets tired. Neurology came in happy to see him going well clinically is going down on the anti seizure medication and want an mri in 3 months. Colton is still getting headaches which could be the medication and his morphine is going down bit by bit. He has BK virus which causing him to bleed from his willy when weeing. The doctor told me they are looking for stem cells to get rid of it. Colton will need another bone marrow transplant but not sure when that will happen. Our shitty luck hasn’t ended either no answers as to what really happened with Nathan, I know what has happened but it hasn’t hit me he isn’t at rest. Steve had a minor car accident him and Stevie were ok but unfortunately the car wasn’t. It never ends.

Thank you everyone for support and love everyone has been amazing. I’m fried, I’m that overloaded my mind is racing and I can’t find the words or emotions for how I feel. I’ve had to keep going even though I was heartbroken, consumed with overwhelming sadness, confused and utter disbelief on Thursday I felt empty, worried sick for Colton while he went scans. Saturday the news got worse, we were being prepared that he might not make it, again this is just a few words describing how I feel. I spoke to the detective today. A lot doesn’t make sense, I’m trying to get my head around it because things do not add up. They are still investigating so I won’t say too much because I don’t know a great deal the same as what they know apparently. I am hurt that my boy could be here, alive being a typical 22 year old who loved his girlfriend, enjoyed his job. He was happy. They are still trying to piece together his last moments the interactions with the police. I do not know what I need right now but answers and Colton to keep fighting he was moved back to Ward today, palliative care team are still involved, he’s been having tremors this afternoon but is sleeping now. There has been some improvements he can speak sentences at times, it comes in waves good moments then those moments where he is vacant, looking straight at me saying I want my mum! Or the monitor beeps because his heart rate is low. He will have mri, lumbar puncture with medication in his spine (I can’t think of the name). I mentally don’t even know if I’m taking in everything in, I know many of you have reached out and thank you! We still have a long fight, things do not feel real, I haven’t had time to process it. I have to hope on child keeps fighting while having to say goodbye to another. I’m torn between holding my grief, knowing things do not make sense. My boy, my pain in the arse he kept me on my toes had the biggest heart and would talk under water. I hope those officers who saw him that night understand what kind of kid he was. I hope you are honest and truthful with your answers.

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.