Scan-xiety. 1. the anxiety associated with cancer-detecting scans. This is exactly how I was feeling while I was waiting for the results of TJ's first PET and CT Scan results after treatment. I'm not sure if it's ever going to get any easier to tell the truth? I think that there is always going to be that lingering fear of relapse. TJ had his PET Scan on Monday the 20th July and his CT scan yesterday the 3rd August. His oncologist was able to confirm via his PET Scan results that TJ now has 'No evidence of disease' which is just another way of saying that he is now in remission. We are extremely relieved and can now breathe easier. We were expecting it to be good news but you just never know until the proof is in front of you. The doctors will be closely monitoring TJ for the next few years to make sure that the Cancer hasn't come back. He will be starting off with 2 monthly X-rays and 3 monthly scans for the next 6 months. This will then be gradually reduced to having check ups once a year. Life for TJ after Cancer TJ's life is never going to be the same again and neither will ours. This experience hasn't all been bad as mentioned in one of my earlier blogs. We've gained new perspectives and now have different priorities in life. We've learnt a lot about ourselves and have become stronger as a family unit. Yes, TJ may have some long term side effects from his Cancer treatment but we will deal with them if/when they show up. I'm confident that TJ will be able to handle any obstacles that are placed in front of him from here on in. TJ once said to me "Cancer is not a death sentence" and he was right. It's a "Life sentence; it pushes one to LIVE".
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Tristyn completed his last round of radiation yesterday and now his cancer treatment is complete. To say that we are excited is an understatement! Cancer didn't have a chance against his strength, determination and positive attitude. So proud of him. Some final radiation photographs. In the first photograph, you can see how happy TJ is that it's his last session. You can't finish Cancer treatment and not celebrate! We had a little party at home to mark the occasion. What's next for TJ?Tj's cancer treatment may now have come to a completition but unfortunatley the doctors visits have not. TJ has to get a review next month and a PET/CT scan in August. He will need to have 3 monthly visits with his oncologist for the next twelve months. This is then reduced to every 6 months for a year and then to once a year for a few more years. If the cancer hasnt returned after 5 years (Fingers crossed) then he will then be classifed as CURED. Yay!! Five things we have learnt from this experienceThere are so many things that we have learnt during this experience. The list seems endless but here are five of them: 1. There are compassionate, empathetic, caring people out there Sometimes the world can seem like a dark and desolate place and there are many people out there that are not so nice to each other but dont give up on humanity because good people with kinds hearts do exist. I know, because we experienced first hand how loving, kind and generous people can be, especially when times were tough. 2. Gratitude We've always been grateful but even more so now. Here are some of the things we are grateful for:
3. Don't sweat the small stuff I know it's such a cliche term but it's so true. There are so many more important things to worry about other than 'The guy who served me coffee forgot to put sugar in it. FML'. Instead of being angry and bitter about the lack of sugar (even if it tastes crappy) be grateful that you could afford to buy a coffee-you're not going to die from lack ot taste. Stressing out about small things like that isn't even worth the anger or frustration. When facing Cancer, or when someone you love is facing Cancer, most other problems seem small. Stressing about little things is nearly impossible to eliminate but it can be managed. 4. Find time to do what you love- One of the things that my son loves to do is play PC games. In his spare time when he wasn't having cancer treatments he would play online with his friends. Not only was he having fun socialising and interacting (even though he wasn't necessarily face to face with them) but he was also distracting his mind from thinking about the fact that he had cancer. It was like a moment of escapism from the daily cancer grind. I should probably take this opportunity to put a plug in for my son ;) Not only does he play PC games but he also streams himself playing games so that other people can watch. If you're a gamer or your child is or you like watching people play games (I know it sounds kind of stalkerish but its actually fun. lol) then please feel free to check out TJ's twitch stream: www.twitch.tv/nitris He will be able to do a lot more streaming now that he hasn't got appointments to attend :) 5. Don't be afraid to ask for and accept help- We are a military family. Both my husband and I left home and joined the military when we were both young. We haven't had any family live close to us in nearly 23 years. This is due to constantly moving due to military postings. We have had to rely only on ourselves. We never had babysitters to look after the kids so we could go and catch a movie or anyone to drop and pick up our kids from school for us because we were running late. I'm not looking for sympathy because we both chose this lifestyle. We have just learnt to adapt and work things out for ourselves. This is why it was really hard to accept help when people first started offering it to us when TJ was diagnosed and probably why we are also so extremely grateful to have received it. In the end my husband and I knew we needed it. We couldn't do this alone. Sometimes it's okay to break down the walls, let people in and actually ask for help and accept it. And that's it folks for now. x Thought it was about time that I gave you all an update on TJ. TJ is now half way through his radiation. Everything seems to be going fine so far and he has had no side effects as yet. The whole process is reasonably quick. We spend more time in the car travelling to the hospital then the treatment itself. The staff at the hospital have been fantastic and have been able to work around TJ’s school hours so he doesn’t miss out on too much. We had a review today with his oncologist and she is happy with how he is progressing through radiation. We have tentatively booked an appointment in for him to get another PET/CT scan about 4 weeks post radiation. Any earlier than that and it will be hard for them to tell what is normal, abnormal or just scar tissue as a result of radiation. We are counting down the days and cannot wait for this to be all over and done with! On another note... TJ’s hair is growing back! This is what one and half months of growth looks like. I think he’s happy that I don’t have to pencil in his eyebrows anymore :p If his hair grows back at a rate that it did before he had chemotherapy he will have a full head of hair in no time! As soon as TJ’s hair started falling out he put a beanie on his head. It has weirdly become part of his signature look. It’s going to be a little strange not seeing him wear one soon. All of his school mates will be shocked the day he walks into school and presents himself with a full head of hair. He said he isn’t taking it off until it has all grown back ( I think it’s also partly because it’s winter and it’s freezing and he’s the only one allowed to wear a beanie at school at the moment ;) That is a good example of getting something positive out of a negative situation. :p We are giving away a pair of Final Touch Eyebrow Wigs (Medium brown) with Adhesive and Adhesive remover. Valued at $93 (Aussies only- sorry!) We bought these for TJ when we found out that he had cancer so that he would have the option of being able to wear them if he wanted to. Fortunately, I mastered the art of 'pencil-ing' in his eyebrows using my eyebrow pencil so he didn't end up needing them. :p These eyebrows are for men but I assume that they could easily be trimmed if needed to suit a female? They are reusable and are made of 100% Human Hair. They are classified as being one of the most superior and natural eyebrows on the market. They are used to give confidence back to people who have lost their eyebrows due to medical treatments, illness, alopecia, stress and hormonal changes Please don’t enter if it is your intention to sell them on ebay etc. That defeats the whole purpose of us wanting to give them away to someone who *genuinely* needs them that can't necessarily afford to buy them. Thank you x If you would like to find out more information on the eyebrow wigs please click on button below: Famous make-up artist Jeffree Star Trialling and reviewing Final Touch Eyebrow wigs. Watch below to see how natural they look!Enter below:I’ve been wanting to do this with TJ for awhile now but haven't gotten around to it until now. Today we did an impromptu Questions and Answers video session. TJ’s blog has mainly been from my perspective as a parent. I wanted to give you all a snippet of how TJ has felt during his cancer experience-from his point of view. I hope that it isn’t too cringe-worthy to watch (Excuse my Umm's). We wanted to keep it real and not edit anything out. Including Tj's purple fluffy socks that he was wearing at the time ;) and me talking over the top of him occasionally- sorry! 🤭 **In the video, TJ made a small mistake in explaining his chemo cycle. His chemo cycle began on a Friday, Saturday and Sunday. He then had a shot of Peg Filgrastim (immunity booster) on the Monday. Four days after that he finished his last treatment for that cycle (Friday). It is all very confusing and would explain why he couldn’t remember it correctly. TJ also forgot to mention that he experienced tiredness and moodiness during his chemotherapy treatments (side effects)- but obviously this affected us more than it did him because he didn't even remember. lol. Please remember that cancer affects everyone differently. This could include different treatments, medications, side effects, results, attitude, outcome. etc. I haven't mentioned this in TJ's blog until now but his Grandma (My mum) passed away from Lung Cancer this year after a year long battle with the disease. Her experience was very different from TJ's. We cannot compare TJ's Cancer to hers but we have been able to learn from her experience. Prior to my mum's diagnosis, I knew very little about Cancer and what some-one with Cancer has to go through. I now know more than I wish I had to :( I hope that in some way this blog and TJ's cancer experience is able to help one of you out there. If you need someone to talk to or have a question that you would like answered, please feel free to contact us via the contact button. x Today we met TJ’s Radiation doctor to plan for his upcoming radiation treatment that begins next Thursday 7th June 2018. We initially thought that TJ was only receiving radiation to his chest area but we have since come to learn that they will be targeting three areas; His neck, heart and chest. We were told that they wanted to target all the areas that he had cancer in at the beginning of his cancer diagnosis to minimise the risk of it coming back again in any of those areas. TJ will be receiving EBRT ( External Beam Radiation Therapy) EBRT tightly targets radiation beams at the cancer from outside the body. The radiation oncology team controls the radiation machine to generate and direct the radiation beams to the designated area’s. TJ had CT imaging to map out where the radiation will be targeting his body. This included three tiny tattoos the size of a freckle. I was expecting them to pull out a tattoo gun to do the tattoo but it turned out to be just a drop of ink and basically a pin. Nothing to it! TJ will be receiving 14 days of radiation (not including weekends) Each session will take about 10-20 minutes. This includes helping TJ to get into the correct position for radiation. We have been told that it won’t hurt, it won’t make him radioactive and that he won’t turn into the Hulk or gain any superpowers. Darn! ;) Of course with anything there comes risks and it’s definitely something that you need to take seriously when deciding if you want to go ahead with radiation or not.
For us, we believe that the benefit outweighs the risks- we want to minimise the risk of the cancer reoccurring later in life. We are aware that radiation can also cause cancer but if you don’t have radiation you have a higher chance of it coming back. It’s a catch 22! :( Nonetheless here are some of the possible side effects associated with radiation to his targeted area’s; Short Term:
Long Term:
And the most scariest side effect: Secondary Cancer (As a result of having Radiation as mentioned above) I should also mention that TJ is still taking the medication- Bactrim and will do so until about 3 weeks after radiation treatment ends. Bactrim is used to treat infections as well as prevent them. Have you had radiation before? Did you suffer any side effects as a result from it? Please feel free to comment below with your radiation experience. Cold and Flu Season is here..We knew that heading into Winter that there would be a good chance that TJ would get a head cold at some point and unfortunately that time has come :( For the past few days TJ has been feeling pretty rotten. Unfortunately it’s not something that can be avoided when he still has to go out in public and to school. Even if we isolated him and kept him at home, his younger brother would most likely pick something up from his school and give it to TJ. It’s just one of those unfortunate things that we hope will pass quickly. Not only is TJ trying to fight off a cold but he has also been complaining a lot about abdominal pain. He said it feels like the muscles in his stomach have been overworked. From what I’ve read on the internet, abdominal pain seems to be a common side effect of chemotherapy. He is also finding it really difficult to keep his eyes open because most of his eyelashes are now gone. Eyelashes help to keep all the dust and dirt out of our eyes as well as keep them moist, so now his eyes just feel dry and sore. Another horrible side effect of Chemo that fortunately will not last forever. I was hoping that things would start to get better for him now that Chemo has ended but alas. It takes about 21-28 days for one’s immune system to recover after finishing chemotherapy, even though the chemotherapy treatment only stays in your body for a few days. Patience has never been one of my strong attributes but thankfully I didn’t pass that trait on to TJ and he is still being a trooper about it all even though he’s not feeling the best. TJ had another Pet scan yesterday to see how the last 2 chemo cycles went. We should be getting the results back in a few days. When we see our oncologist for the results, we will most likely find out what the next steps are for his radiation therapy. Will keep you all updated. UPDATE- 29 MAY 2018
TJ’s results came back the other day from his Pet/Cat scan. TJ’s neck lump has now completely gone. His chest lump has reduced size from 12cm (About the size of a Grapefruit/Cantaloupe) to 6cm (The size of an egg) The oncologist said that this could just be scar tissue but because of the limitations of the scanning equipment, they cannot be 100% positive that there is no active cancer within the lump*. (Pet scans may not be able to detect tumors less than 7mm) *TJ's lump is not a solid mass but made up of spider-web like fibres (That's the way my husband explained it to me.) For this reason TJ will be going ahead with Radiation as was expected. Radiation sounds like a scary prospect but TJ is happy to do whatever he has to, to help minimise the risk of his cancer coming back one day. Tommorow the 30th May we will be meeting up with his Radiation doctor for planning and TJ will be having another Cat Scan so they can map out where they need to target. Today is a very exciting day for TJ. It’s his last day of Chemotherapy! And what a day to have it on too. May 4th! (Star Wars day!) The Adelaide Women’s and Children’s Hospital really made everyone’s day today by organising an Imperial Pilot and a Jedi Master to visit all the kids and teens in the Oncology ward :) As you can see by TJ’s expression below in this photograph; he was thrilled! And they even gave him a little gift: TJ also had his PICC line removed for the last time! He said he can’t wait to go for a shower now without it and not be restricted in movement. He’s already put in a request to go Go-Karting!
TJ has to get a Pet and Cat scan in a week or 2 to see if his lumps and bumps are gone. Then 1-2 weeks after that he begins his radiation. We have a couple of weeks break now so I’ll keep you all updated when there have been any changes. May the 4th be with you ;) Yesterday TJ had his ECG (Electrocardiograph) and ECHO (Echocardiogram) test to see if he incurred any chemotherapy-related heart damage. Some chemotherapy treatments such as Doxorubicin can damage the heart. This damage can be in the form of CHF- Congestive Heart Failure. (When the heart does not pump enough blood into the body) I’m happy to report that we received the results back and no damage was detected :) TJ will most likely need to get another ECG and ECHO test after he has finished his radiation therapy. We also received the results back from his Lung Function test. His DLCO (Determines how much oxygen travels from the alveoli of the lungs to the blood stream) has dropped from 92% to 82% but still within the ‘Normal’ range. **ECHO test is an ultrasound of your heart **ECG-records electrical activity of the heart over a period of time by placing electrodes on the skin Today TJ began the first day of hopefully his last chemo cycle ever!! His last chemo treatment day will be next week on Friday 4th May. We know it’s not over yet and that he still has to get through radiation but we are happy that this part of his journey is soon coming to an end. :) We will be throwing an ‘End of Chemo’ party to celebrate! Update: Saturday 28 April 2018TJ completed day 2 of his chemo cycle today. (4th round) He woke up this morning not feeling well. This has been the first time since his treatment began that he has really felt the effects of the chemo. His cheeks were flushed red and he was complaining of the smell and taste of chemicals. He didn't want to drink water because he said it tasted funny and said that he felt tired, weak and sick. TJ takes medication called ‘Ondansetron’ (We call it Tron) to help him from getting nauseous but it didn’t seem to be working too well today so they also gave him some Maxolon. It seemed to do the trick and he was feeling better within a short period of time. On a side note; we noticed TJ starting to lose his eyebrow hairs a week ago and this morning we noticed that his eyelashes are also about to go. We bought some false eyebrows for him in case he wanted to use them but so far I’ve been able to fill them in using my eyebrow pencil :p I think I might go lighter on the hand next time. Practice makes perfect right? ;) If TJ doesnt end up using the fake eyebrows I bought him, we will be doing a competition on his blog to give them away. This will include latex free Adhesive and Adhesive remover (All brand new and unused) Watch this space! This is what the brows look like:TJ had his pulmonary lung function test yesterday. This test is done to find out how well your lung and airway works. It includes a: - Spirometry which measures how much air you can breathe out from your lungs and how quickly you can do it. - Lung plethysmography which measures how much air is in your lungs after you take a deep breath and how much air is left in your lungs after you breathe out as much as you can. - Lung diffusion test which measures how well the oxygen moves from your lungs into your blood. Tj needed to do this test again so it could be compared against his base line test that he did at the beginning of his cancer diagnosis. It also measures how his chemotherapy treatments and medicines may affect his lungs. We are unsure of the comparison results at this stage. These tests are suppose to be painless but TJ seemed to struggle through them again. :( Besides making TJ a bit breathless (which I think is normal?) he said he also felt a tight squeezing sensation in his chest when he expelled the air from his lungs. A couple of video’s of TJ doing his lung tests: TJ also had a dental appointment to repair a couple of his bottom teeth that he had chipped prior to his cancer diagnosis. This wasn’t done for aesthetic reasons but to stop germs from entering his body and infections from occurring. Chemotherapy lowers the number of white blood cells in the body and a person receiving the treatment is more prone to infections, including oral infections.
We were going to get braces for TJ after he completed his cancer treatment but we have been told that he will now have to wait another year or two after treatment. This is so that his immune system has time to recover etc. I guess we have more time now to save $8000 to get them done! 😮 |
AuthorHi, I'm Tj's Mum; Zoie All Blog Entries
August 2018
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