We finished our holiday back to Te Anau (yes it is weird to be holidaying in our own home) on Sunday and with that over, a return to Christchurch and to treatment came.
Luka starts 2023 off with the next main phase of treatment - radiation.
12 sessions over 12 days with weekends off. Each session is about an hour but this includes about 58mins of prep & recovery time with all but a few minutes of actual radiation treatment.
Luka's radiation plan is designed to hit the source of the first main tumour with a photon beam and effectively kill that area permanently within his body. The left photo below is Luka's first full scan which shows cancer throughout his body (the black dots & smudges) and the main black mass in the red circle is the main tumour.
Even though the tumour has been taken out and chemotherapy has removed the cancer cells (according to the scan on the right), the treatment plan continues on and the point of radiation is to try and remove the ability for that initial area of the body to produce another tumour in future. They are radiating the area circled in red on the right photo below.
In the left photo Luka's thighs and knees are smokey black, this is because there is cancer there. Everything Luka has gone through with the dark days of chemotherapy was to achieve the right hand side photo and now the reason that they don't need to radiate his legs as well.
The way radiation was explained to us is that chemotherapy removes the weed. Radiation removes the root.
Day five tomorrow. Today's choice of animal for his jungle was a lion. Sums up his approach to all of this pretty well. retty wel. rlletty we. pretty w. pretty . pretty. prett. pret. pre. pr. p. . up to entering the radiation room where he will be put to sleep under general anaesthetic. His favourite toys are a set of golf clubs, the balloons and his jungle which he gets to add an animal to for each of the sessions he has.
Once he is 'relaxed', he is then led to the radiation room by his buddy radiologist, and the teddy bear hunt put on for him 👇
Once the last teddy bear is found (sitting on the chair beside the treatment bed), one of us sits with Luka in our arms like a young baby and soon after they start the anaesthetic infusion. He handles this fairly well, usually a small cry before quickly falling asleep. This is a hard moment and even though he has had at least a dozen G-A's before over 2022, it still manages to crack us each time.
Placed on the bed, the team gets to work getting him set up. He lies in a pre-formed mold made off his CT scans. The mold forces him to lie a certain way and his organs to be positioned so that the incoming radiation beam doesn't hit things like his kidneys, liver and surrounding tissue that doesn't need to be damaged.
His left kidney is at a slight risk as the tumour grew right beside it but we have been reassured that they believe they can avoid photon's leaking into/onto it. He is also having treatment on his spine & two vertebrae where the tumour wrapped around.
The radiology team then use the bed which has a six-way control to get him perfectly lined up with the eye of the beam. Luka has a tattoo on his stomach, as well as several other lines. They then line these up with lasers in the room to complete the positioning.
We were invited to watch the whole process. This first part from the play room to being ready for treatment took about 40mins. They then started the treatment. Two minutes later, Luka was done.
At this point we disappear up to the family room by recovery while they transport him in and slowly wake him up. This is always a nervous moment - what type of mood will he be ? Did it go well? Were there any issues?
So far so good. Some of the best wake ups he has had after G-A throughout this journey.
The side effects of this treatment can go two ways - be absolutely fine, which so far he is. Or he can develop mucositis, which he had during the last two high dose rounds of chemo and caused hundreds of ulcers throughout his mouth into his stomach. We are told that radiation in this area could cause ulcering but we will wait and see.
Our main concern is any damage that doesn't need to occur and this is the importance of the team positioning him perfectly. We are thankful that Luka in terms of radiation has a fairly straight forward treatment, compared to other complicated cases such as cancers in the main organs.
Day five tomorrow. Today's choice of animal for his jungle was a lion. Sums up his approach to all of this.
Your explanations of the procedures the three of you go through for each of Luka’s treatments is so informative and such a great help for us to understand. The teamwork of everyone involved is amazing. Luka is a credit to the two of you and very accepting of what he has to go through for one so young. You got this you three 💖
Interesting read, makes one understand what Luka has to go through. Thanks for sharing.
Thank you for sharing this real and raw part of Lukas journey. Such an interesting read and to see how his treatment is performed (although interesting feels like the wrong way to word such an intense experience for you all) . I’m permanently in awe of how brave and strong willed your boy is. He can achieve anything!