Riley’s Hodgkin Lymphoma Journey

Riley’s Hodgkin Lymphoma Journey Riley is 22yo & lives east of Warwick, Qld. Riley was disgnosed with Stage 4/Advanced Stage Hodgkin Lymphoma in February 2025.

We will post & share Riley’s journey here for family, friends & anyone else wishing to follow along & share positive vibes. 💜

The appointments continue to roll, today’s is GP for a diabetes plan.  We still have no idea if Riley has type 1 or 2 at...
05/08/2026

The appointments continue to roll, today’s is GP for a diabetes plan. We still have no idea if Riley has type 1 or 2 at this point as more testing is required over the next month or so to determine this. Vomiting and other symptoms are ongoing with his new medication and sugar levels, so much to manage atm.
We have had an update on Riley’s scan regarding the abnormality where his largest tumor was on his right lung. The oncologist has requested another PET scan so they can see more clearly what is occurring and so they are able to marry this to his end if treatment PET. So ongoing.
We also have an optometrist appt to check his eyes for his diabetes and an upcoming Oncology appt next month.

Riley had his hospital appt today at the Diabetes Clinic. We are not sure what type he has yet.  They said it could be s...
10/07/2026

Riley had his hospital appt today at the Diabetes Clinic. We are not sure what type he has yet. They said it could be somewhere between 1 and 2, they just aren’t sure. His sugars are quite high, sometimes up to 24, but ketones are low for now. They have started him on diabetes medication to take everyday and he’s on monitoring at least once a day before eating to see where that medication helps. May need adjusting to higher doses which we will regulate with his GP. There’s another blood test in 1 month to see what his glucose is doing along with a heap of other things and this is where we should have a better idea of type 1 or 2. Some symptoms can be a result of chemo so they have done a baseline test on his feet and he has to have a eye test (noting that he is diabetic) to see how his sight is and establish a baseline. Then we’ll go back to revisit everything at the next clinic appointment.
They wanted him to do the insulin but he declined. He is struggling with this a bit, like a ptsd, So for now we will just do the tablets and see where he sits after being on them for a while. Insulin may be still required and we have some on hand in case.
Going through something as traumatic as chemo and a cancer battle etc is wrenching journey. Hearing remission, is conflicting as so many think, oh you’re done that’s it life goes on. It’s not the case. Life has changed for the survivors and a new life post chemo is being navigated. There’s still 5 years of oncology follow ups, more blood tests, fear of reoccurrence and after effects just to name a few. This is just the next stepping stone, and Riley will take it as it comes. Sometimes though, you just need a pause before you jump to take on that next step. 💜

Update: So last update Riley had a CT scan and lung function test.  There has been an abnormality found in his CT scan ...
25/06/2026

Update:
So last update Riley had a CT scan and lung function test.
There has been an abnormality found in his CT scan but not in his collarbone which is what the scan was originally for. His collarbone is clear and the abnormality is in his right lung next to his heart. This abnormality may well be scarring as this is where his largest mass was however, they have ordered his PET scans down from QLD (which was lost, twice) but they have them in hand now. These past scans will be compared with his current amongst the hematology team and radiology team. Let’s hope for positive results.
Lung function and echocardiogram were both good results However, it appears Riley now has diabetes. During chemo, he was unable to receive the standard steroids to help with chemo effects as his sugar levels would spike to 30+ leaving him to have insulin to lower them. Follow up testing now, post chemo, still shows too high readings and after testing over the last few weeks and finger pricks today, we have been advised by his hemo nurse to head up to urgent care. So off we go again. Looks like we have another path on Riley’s journey to venture down. Stay tuned…..

Riley had his Lung Function test today to determine if or what damage may have been done to his lungs from the chemo.  R...
05/05/2026

Riley had his Lung Function test today to determine if or what damage may have been done to his lungs from the chemo. Results in June. 🤞🏻

The boy is currently in for his CT scan.  Hoping for good news. 🙏🏻
28/04/2026

The boy is currently in for his CT scan. Hoping for good news. 🙏🏻

Hematology appointment today to follow up on the achey pain in Riley’s collarbone.  Bloods, stats and physical exam all ...
24/04/2026

Hematology appointment today to follow up on the achey pain in Riley’s collarbone. Bloods, stats and physical exam all were positive so nothing jumping out but they have ordered a CT scan to get a thorough look at his collarbone in and under, as well as chest to see what might be causing the pain. Scan has been booked in for Tuesday afternoon and If there are any concerns, they will call us back before his next regular appointment in June. Lung testing is upcoming and they are also testing for diabetes due to his reactions to steroids during chemo, part of the “survivorship process”.
Riley did joke about seeing if a hair transplant was deductible on Medicare, and Doc said he might need a trip to Turkey for that one. Until it returns, whacky hairstyles are necessary! 😆
The one thing I was worried about after moving to Tassie, was getting another Hematology Team as good as the one we had in Toowoomba. It seems we fell on blessed ground as we are so far very happy at their diligence and thoroughness. For that I’m grateful.
It’s a scary time post chemo as the lingering doubts are always there, however, Riley is in great spirits so we remain positive. Have a great weekend all x.

Thought we’d do an update.  Riley has been experiencing pain in his right collarbone which is the same his cancer was pr...
14/04/2026

Thought we’d do an update. Riley has been experiencing pain in his right collarbone which is the same his cancer was present in. We’ve had blood tests done and all seems well with them. Some low levels on his lymphocytes and white blood cells but they weren’t too bad. After speaking with his Hematology team in Launceston, they have booked him in for an appointment next Friday rather than waiting for his next appointment in a couple of months.
Let’s keep fingers crossed all is ok.
Even though the Remission word is used post chemo, it’s all too easy to think the worst and plunge back into worry mode, we are told that’s a normal response. However, we are thinking positive thoughts.
We will update afterwards. 🙏🏻

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