One day my 14 year old son TJ approached me and told me that he could feel a lump in his neck. I remember telling him not to lift so many weights at the gym because he had probably popped a vein or pulled a muscle. I was expecting it to go away in a week or two but it hadn’t. I asked him if he was still lifting heavy weights to which he replied he was. I shrugged it off thinking that it wasn’t going to get better if he wasn’t going to stop with the weight lifting. The Christmas school holidays approached and in this time (approx 6 weeks) my son didn’t do any weight lifting. Tj didn’t mention his lump again during this time so I assumed that it was gone. It was the day before school resumed and Tj approached me again and told me that the lump was still there. A warning bell went off in my head. I knew immediately that something wasn’t right. He hadn’t lifted weights in weeks, it couldn’t be from that. I booked him in to see the doctor that weekend. In the meantime my husband and I did some quick google searching on the internet and yes I know how dangerous that is! everything always leads to a brain tumour or death but we did it anyway. Doctor google told us it could be either a cyst, an infection or a rare form of cancer called Hodgkin's Lymphoma. I remember reading through the symptoms of Hodgkin's Lymphoma thinking ‘Oh my goodness! our son has some of these symptoms’. Some of the symptoms were; Itching ( I had assumed he was scratching a lot because he had dry skin so kept telling him to moisturise) and bleeding (He had the occasional nose bleed but I just assumed that it was hormonal). You know what they say about assumptions... After self-diagnosing my son via google I had it set in my mind that TJ had cancer. The weekend arrived (3rd/4th February 2018) and it was time for my son’s appointment. My husband said that he would take him while I stayed at home and looked after our youngest. I remember feeling extremely anxious and sick waiting to hear of any news. I received a text message from my husband telling me that the doctor had given him urgent referrals to take TJ to get an ultrasound, X-ray and blood tests, so off they went. An hour or so later I received another text message from my husband saying that they would now be doing biopsies of my son’s neck. The warning light in my head started going off again. This did not sound good. My husband also texted me...’The ultrasound lady mentioned something about Hodgkin's Lymphoma and that Delta Goodrem used to have it’.... I reminded myself not to panic and to keep my cool. Nothing had been confirmed, it was just speculation and I’m pretty sure that if TJ did have cancer it would come from a doctor and not the person doing the scan. I anxiously waited for my husband and son to come home. I wanted to see my husbands reaction on his face when he walked in the door. I thought this would give me some kind of indication as to whether everything was going to be okay or not. I heard the car pull up. The door opened and my son walked in. His reaction-normal. My husband followed him in. His reaction- blank. He was holding a copy of some X-rays in his hand. He calmly said to me “Can you go upstairs and I’ll meet you up there”. I remember thinking ‘oh crap! This cannot be good’. I went upstairs and my husband followed behind me closing the bedroom door. He asked me to put some ambient noise on so the kids couldn’t hear us talking. It was then that I started to panic. I looked up at my husband and he had started pulling the X-rays out of their sleeve. “See this” he said while pointing at what looked like a picture of Tj’s chest. “Yes?” I replied. “Well, that’s not his heart” he said and then started to cry. “That is a large mass in his chest”. I couldn’t believe what I was hearing. “Wait. What? Why did they do an X-ray of his chest? The lump was in his neck..”. “Because they know what they are looking for.” He replied. I felt sick. The next few days that followed were a blur. Blood test results came back in dribs and drabs. Our son’s fine needle biopsy results came back inconclusive so they had to give him 4 more core biopsies with a thicker needle. This meant more waiting. In this time we saw three different doctors. One doctor told us that it could be ‘Cat scratch infection’, another told us that he wouldn’t be surprised if it was just some rare infectious disease and another told us not to worry because according to the blood test results, it WASN’T Hodgkins Lymphoma like I had feared and then gave us a referral to the Women and Children’s Hospital. I remember crying from relief when she told me that. The good news was short lived when my husband said to me that it made no sense because we hadn’t even got the core biopsy results back yet and that is what would determine what it is. My husband and I felt like we were living in a nightmare. We prepared ourselves for the worst case scenario; that it was going to be cancer. We didn’t say anything to TJ because we wanted to know for certain. There was no point worrying him unnecessarily. We rang our family and friends, we cried, we had no sleep, we argued, we hugged and we contemplated about what we were going to do next if it did turn out to be bad news. Then we got the phone call.. my husband answered it. It was late afternoon on the 12th February 2018. Exactly two weeks before my son's 15th Birthday. “We have the core biopsy result back for Tj and would like to inform you that your son has Hodgkin's Lymphoma’. (Or words to that effect) At that moment, our world stopped. I think my heart stopped beating in my chest for a few seconds. We organised for Tristyn to see the doctor the next day so he could be told the results. It was really hard for both my husband and I to keep ourselves composed in front of TJ. All I wanted to do was hug him and tell him that everything was going to be okay but we decided to wait for him to hear it from the doctor first. The next morning we told Tj that his results were back and that we were taking him to the doctor so he could be given the results. We arrived at the doctors office and he sat Tj down in front of him and told him that he had a rare disease and explained that he had cancer but without using the 'C' word. Tristyn looked at him and said “Okay”. After we left the doctors office, I asked him if he understood what the doctor just told him and he said “Yeah, I’ve got cancer. I’ll just do what I have to”. It was from that moment that I knew that everything was going to be okay. Tj wasn’t phased at all. He didn’t think of Cancer as a death sentence. Not once did he ask if he was going to die or how much time he had left. His attitude was and has been really positive from the beginning. Tj was booked in to get a Contrast CT Scan at the New Royal Adelaide Hospital to find out what they were dealing with and we were referred to the Women and Children’s Hospital in Adelaide where we would meet Tj’s oncologist. This image is a scan of TJ's body. All the black stuff is active area's of his body. Some of it is normal. e.g: The brain, the groin, the throat from swallowing, the contrast dye in his arm. The stuff that is inside the circle is the active cancer cells in TJ's body. This includes the mass on his neck, the mass on his chest and other small cancer spots. After Tj had completed all the appropriate scans and blood tests, we met with Tj's oncologist for the first time. She explained to us what type of Hodgkin's Lymphoma he has, what stage he is, how long she thinks he’s had it and his treatment plan. The oncologist told us that Tj has Classic Hodgkin’s Lymphoma (Bulky) Type A, Stage 2. She thinks he has had it for approximately 6 months and that he will have approximately 4- 6 cycles of chemotherapy treatment- ABVE-PC (depending on his response rate) This may be followed by 3 weeks of daily radiation. **Each chemo cycle consists of 3 consecutive days of chemotherapy treatment. It is followed by an injection of Peg-Filgrastim (Immunity booster) the next day and then 4 days after that another treatment of chemotherapy. He then has a 2 week break before the next cycle.** ABVE-PC is the abbreviation for the following drugs; A- Adriamycin (Doxorubicin) B- Bleomycin V- Vincristine E- Etoposide P- Prednisone C- Cyclophosphamide The oncologist gave us the below diagram to show us the two different scenarios: The oncologist also explained that TJ will need to have a PICC line (Peripherally inserted central catheter) inserted to administer the chemo and to withdraw blood as it is less intrusive/painful for children. She then mentioned something to us that hadn’t even crossed our minds, and I cried. (again). She said “There could be a possibility that your son may not be able to have children when he gets older because of his treatment” she then asked us to consider getting a sperm collection from TJ so that it could be put in storage for future use. Even though my mind didn’t want to go there, we didn’t hesitate and booked him in to get it done the next day before his chemotherapy began. TJ also had to get a heart and lung test done before treatment to get a base line so they can compare it with another test he will do after he has completed his treatment. After the PICC line was inserted, TJ was admitted to the Women and Children's Hospital for his first chemo cycle. They wanted to monitor him to make sure he didn't have a reaction to any of the chemo drugs that he was given. His first cycle went well and he didn't have any problems. We were sent home with a bag of medication for him to take. **insert shock face** Two weeks after Tj had his first cycle of chemotherapy his hair started to fall out. I think I took this worst then he did. It was easy to look at him when he had hair and forget that he had cancer but now it was an unavoidable reminder that he does :( I was also worried about people treating him differently or avoiding him. He hadn't returned to school since he was diagnosed due to all his tests and treatments so a lot of his school friends didn't know by this stage. He wrote the following message on his facebook wall to let them all know. He had an amazing amount of support and all of his friends have been terrific. TJ's hair falling out: Over the next few weeks everything went reasonably well for TJ. He didn't have any nausea but did complain of shortness of breath, a sore tingly tongue and mild constipation which we resolved by giving him some Metamucil. He continued to go to school. Two weeks before his next cycle of Chemo, the Women and Children’s Hospital/Cancer Youth Services contacted us to ask if we would like to go to the ED Sheeran concert in the corporate box. Of course we said yes!. TJ said "See mum, there is no bad without good". It was an enjoyable night and I am so thankful that TJ was given this experience as it helped take the focus off all the crappy stuff that was going on. The evening of the Ed Sheeran concert, TJ started to develop a rash near his PICC line. We took him to the hospital the next day and he was given antibiotics in oral form. It progressively got worse so they gave him antibiotics through the PICC line. We were told that it will most likely need to be removed after his next cycle which began the following day. TJ completed his second cycle of chemo and his PICC line was removed. During his second cycle of chemotherapy, TJ had an itchy reaction to the chemo drug; Bleomycin. They gave him an anti-histamine. It wasnt until a couple of days after his treatment that we noticed the after effects of his scratching from the itchiness. The scars still remain, a month later. The next couple of weeks after his second cycle of chemo, everything went considerably well. He started going to the gym at the Leukaemia foundation, which he really enjoys and continued to go to school with only a couple of missed days due to appointments. Another pet scan was booked for him at the New Royal Adelaide hospital for his oncologist who was giving us a mid cycle review. Blood was taken and we visited the oncologist for the big reveal. I'm not sure how I was expecting it to go? I've never had any negative thoughts during this whole process. I guess I was thinking that he may be in the slow response category due to the size of his masses so imagine my surprise when the oncologist pulled out this scan to show TJ... TJ is in the rapid response category!! All of his cancer is now inactive. Remember that scan above? What a difference! The oncologist suggested only 2 more cycles of chemotherapy to get any remaining active cancer that could be too small to be seen, another scan and then perhaps another 3 weeks of daily radiation if there are any masses left in his neck or chest. She also suggested another PICC line insertion to get through the next two cycles of chemo (To make it easier on TJ). Since our oncologist appointment, TJ has had a new PICC line inserted and started his 3rd cycle of chemo, he has his last treatment of this cycle on Friday and then he only has one more left before radiation begins. So that is where we up to at this stage. Everything is progressing as well as could be expected considering the circumstances. TJ is a tough kid with a very positive attitude. He has an amazing network of friends and family rallying him on and we are extremely confident in his oncology team and the nurses and doctors treating him. Along the way, Tj has had some very positive experiences that I would like to make mention of as it's all of these gestures that have helped make this journey for him more bearable. Thank you if you have had a part in making any of these things possible for him.. (hover over photo's for descriptions)
1 Comment
Helen Allport
12/4/2018 08:19:39 pm
Well done To, you are an amazingly strong young man. Mum and Dad must be very proud. Sorry to hear about the rough time your family have had recently with you cancer and your Grandma. Keep your spirits up.
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AuthorHi, I'm Tj's Mum; Zoie All Blog Entries
August 2018
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