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:
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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! 😮 Today we had an appointment at the hospital for a PICC dressing and a blood review for TJ. While we were there, we were approached by the Social worker who kindly gave us some gift cards that were passed on from the Redkite organisation. I am absolutely blown away by the generosity of organisations such as this (And in essence, the people that help support these organisations through donations.) These gift cards will go a long way in helping to alleviate some of the financial stress that we have gained due to TJ’s cancer diagnosis. If you have ever wondered if your donations are actually getting used wisely/appropriately then I can confidently say to you YES! and people like us, really really appreciate it. Not only are donations used in helping to find a cure but they also help to make lives of those who have been touched by cancer, that little bit more easier. And on that note.. I’d like to say a HUGE thank you to those of you who donate and to all the organisations/partners/sponsors that play an important part in making a difference. Now for an update on TJ-
TJ’s blood counts were low today but that was to be expected due to his last chemo cycle. Thankfully they weren’t low enough that he needed a platelet or blood transfusion. We also received an update of what we have on the agenda in the next few weeks. Basically we will be living at the hospital for awhile. :p This is TJ’s schedule for next week:
This will all be followed up with a final scan before moving on to radiation. It all seems a bit overwhelming but we’ve got the ‘put one foot in front of the other’ routine down pat now and TJ is taking it all in his stride which is great! Have you just found out that someone you know has cancer and you want to help but don’t know how?
Below are some suggestions on what you can do to help make their life a little bit easier:. Offer to make some home cooked meals that can be stored in their freezer. There were so many days, especially in the beginning where we were spending all day and night at the hospital. The last thing we wanted to do was come home and cook because we were either too exhausted or mentally drained. It was too easy to resort to unhealthy eating choices and takeaway because it was simple and convenient. Already prepared meals made by friends was heaven-sent! * Make sure you find out what foods they can and can’t eat first before preparing meals as they may have restrictions e.g: No soft cheeses, processed meat, mayonnaise etc Surprise them by mowing their yard, weeding their garden etc This was another one of those chores that unfortunately got put on the back burner because we didn’t have time. Thankfully we have a small yard! The beauty about this job is that you don’t even need them to be home to do it. If you’ve got access to their yard, you could mow it and surprise them before they get back from the hospital. Offer to babysit During this whole journey my husband and I have been so consumed by what is happening with our son and making sure that his brother also gets attention that we sometimes forget to take time out just for ourselves. We don’t feel comfortable leaving our children home alone at night and there may be others who feel the same. Offering to babysit the kids will help take that worry away so that the parents can have some time out and go on that long overdue date night. Walk their dogs/play with their animals Unfortunately because a lot of time is spent at the hospital, animals may feel neglected. Especially if they are used to having a lot of attention and daily walks. Offering to take the animals for a walk or a play at the park will make the furry members of the family happy, as well as the non-furry ones ;) Offer to clean the house. It’s all about helping to make life simpler. As we all know, cleaning the house takes time and energy and it’s really difficult to do when you don’t have the time or energy to do it. Cleanliness is really important to someone who has cancer. Immune systems are virtually non-existent to someone undergoing treatment and they are susceptible to picking up germs and bacteria. Put together a care package My son received one of these and we thought it was amazing. Some of the things you could include so they can take to the hospital could be:
Other thoughtful gift ideas:
Be there- Finding out that you have cancer or someone you love has cancer is a scary experience. I remember when I was waiting to find out about my son’s cancer diagnosis (and then when we found out) my head was all over the place. I just wanted to talk to someone. Fortunately I had some terrific friends who were a great network of support. They continuously sent me messages or called me to see how we were all doing. I never felt like we were doing this alone and I knew that I’d always have help if I needed it. You may feel like you don’t know what to say. Just let them know that you are there for them and that if there is anything you can do for them to let you know. Just knowing that they are not alone is enough x and lastly.. Try to avoid saying- ‘There is always someone worse off than you’. I know that it probably comes from a well-intentioned place but I’m pretty sure they already know that. Most people are aware that there is always going to be someone else who is going through a lot worse. What they are experiencing is important too. By saying those eight words it can sound like you are trivialising what they are going through. (Even if you don’t mean it that way) Their problems, feelings, thoughts, experiences and emotions are justified and valid too regardless of what it is they are going through. Comparing someone else’s problems is not helpful. *I have to admit that I have said this on occasion when talking to other people about my own experiences but only because I don't want people to think that I am complaining or whinging about my situation. Things we wish we knew at the start of our son’s cancer journey and some tips that will hopefully help make life at the hospital that little bit easier for you: To help save money, consider paying for a weekly parking ticket- You will be at the hospital a lot and the price of hospital car parking adds up quite quickly. We were paying for hourly parking for quite awhile before we realised that it was cheaper for us to pay for a weekly parking ticket. A one hour appointment can quickly turn into a four hour appointment. Which brings me to my next tip.. Be prepared. Try not to make other plans- If you have been given an appointment and it’s only suppose to be for a couple of hours be prepared that you could be there for the majority of your day. Emergencies, staff shortages and unforeseen things happen all the time at the hospital. We have never had an appointment that has ran on time but that’s okay, because we are now prepared for the unexpected time delays and we don’t plan anything else that day. Example; we had an appointment yesterday that was booked in for 9:30 am, it was suppose to only take two hours. We left the hospital at close to 3 pm that afternoon. Health care card- Apply for a health care card for yourself or your child as soon as possible. Medication is costly and the health care card can help reduce some of that cost. The application process takes quite awhile to get approved. We are still waiting and it has been nearly two months since our application was submitted. Talk to your doctor/oncology pharmacist, they may be able to hold onto/extend your invoice payment date for you until your health card comes through. To help save money, take food/drinks with you - Pack yourself some food to take with you to the hospital. Cafeteria food/coffees are also quite expensive and can quickly add up. There may be a parents room in the oncology section that have refrigerator’s that you can put your lunch boxes/drinks in. Buy yourself a journal/diary- There will be so much going on, especially at the beginning and it is hard to keep track of what is what. A journal is a great way of recording appointment times, jotting down information that has been provided to you and to record anything out of the ordinary that may be happening to you or your child’s body due to treatment. e.g: rashes, high temperature, bleeding etc We take our journal with us every time we go to an appointment and it has been extremely helpful so far. Take advantage of Support services- I know that I mentioned this already in a previous blog entry but I’d like to include it in this tip section also. There are so many support services available to people who have cancer. Not only is it there for the person who has cancer but also for the people in their lives. I highly recommend utilising these services. It could make a huge difference in your life and the way you and those around you cope with having cancer. You should be appointed a social worker at the hospital who will help guide you through this process and can provide you with referrals to services that are available to help. These services can include; financial support, counselling, education programs and information, support groups, accomodation, practical assistance, physiotherapy (and more) Here are some links for Cancer support organisations: www.healthdirect.gov.au www.childhoodcancer.asn.au canceraustralia.gov.au/affected-cancer/cancer-support-organisations www.cancersa.org.au/information/i-have-cancer/support-services www.canteen.org.au/how-we-help/other-support-services/ www.redkite.org.au www.variety.org.au/sa/ Grab a business card or letter head- There are going to be so many appointments that you will need to attend during your cancer journey. This will either be at the same hospital or different ones. Each area will have their own contact number. E.g. Dentist, Pathology, Radiology, Oncology, Oncology ward, Pharmacy etc. You may have to contact them at some point to either schedule or reschedule an appointment or to ask a question. Business cards/letterheads have all their names and contact details on them. We stored all the business cards that we collected in our journal folder but you could collate all those contact details and store them on your phone (if you have time) or write them in a word doc/spreadsheet. Don’t forget to write down names- I have to admit that I am hopeless with remembering names-but I try!. You will meet so many new faces and a lot of these people are going to be with you through your entire cancer journey. It could be the nurses who give you your chemo treatment, the staff in the ward, the different doctors coming in to speak to you, the pharmacist, the social worker, the hospital school teacher, the chaplain and so on.. Writing down their names gradually helps you to remember who they are. We still get their names wrong on occasion and have to check our journal. I believe that addressing someone by their name helps you to establish a better connection and makes them feel just as important as they make you feel when they use yours. Not only that but it helps save you the embarrassment of saying things like “I’m sorry, I can’t remember their name? The nurse with the long brown hair, I think her name started with an S or maybe it was an M?” :p And the last tip.. Don’t forget your phone charger, cables and/or spare battery packs- You will spend a lot of time in hospital either waiting or for treatments and what else can you do besides watch ABC for kids on the hospital television or surf the internet? ;) There should be places that you can plug your phone in to for charging but sometimes the outlets may be out of reach. Having a spare battery pack is handy in that situation. You don’t want to miss out on watching that funny cat video do you? :p Extra tip: You also might be lucky enough to have free wifi in the hospital too! So don’t forget to ask for the password before you chew through your own data. If you have any tips or things that you have picked up along the way that could be helpful please feel free to share in the comments section below :) Today TJ had his last chemotherapy treatment for his third cycle. Only one more cycle to go before his radiation treatment begins. TJ had to get blood drawn the normal way today because his PICC line had become clogged. Unfortunately this is not an isolated incident and has happened a couple of times. (Forgot to mention that in the previous blog) Fortunately the hospital has a ‘Draino’ solution called Alteplase on hand that they use to help unclog the line. It usually takes about an hour for it to work. Like anything, having a PICC line has its advantages and disadvantages. Advantages: - Chemotherapy treatment and fluids can be administered easily without the need for a tube to be inserted into the vein of your arm each time. - Can draw blood out safely and conveniently without having to deal with the pain of a needle. Disadvantages: - PICC line clasps can unclamp - PICC line can get clogged from bodily fluid - Restrictions in daily movement - Unsightly - Need to be dressed regularly - Always has to be covered to help stop infections and the clasps from unclamping - Need to cover with a shower protector to stop it from getting wet - Can get infected - Can become allergic to the PICC line components e.g: bandage, tape Personally, we really like the idea of TJ having a PICC line and he doesn’t seem to mind either. The disadvantages certainly sound off-putting but if it’s going to be less painful then being jabbed and prodded all the time then that seems like a small price to pay. In a couple of weeks time TJ will be doing another heart and lung test to see how it compares with his base line test that he did at the beginning of his journey. We expect it will be a lot easier for him this time, now that the mass in his chest has drastically reduced. He’s still not looking forward to it though! :p You are never too old for a visit from the Starlight foundation. |
AuthorHi, I'm Tj's Mum; Zoie All Blog Entries
August 2018
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