Thursday, February 7, 2013

FB takes over blog! Noooooo....

I have found that Facebook seems to be the fastest point for updates lately and I feel bad that I should also put something up here too, so don't stress if you don't have a FB cause I will eventually get around to updates here when I can. As you know we arrived back in Australia 5 months ago. Settling in has been a bit harder than anticipated, I see now it will be a year or two in reality, to be budgeting better and catching up on things. So far I tried Peter Mac Hospital for an Oncologist there, but they referred me to Monash as they do not do pediatric bone marrow biopsies and they feel Dylan would be better having everything done in the one place ie: The Royal Children’s or Monash, which are both linked with the same team of oncologists. As everyone knows, I have great hesitation of running into 3 previous oncologists who were involved in Dylan’s case for the first 6 months. I was assured that I could meet with Dr Moore instead and not deal with those particular doctors. After dealing with my personal feelings about even dealing with the team members from the Children’s, I went in with the professional not personal attitude. I was greeted with open arms by Dr Moore who was a fellow at the time of Dylan’s diagnosis and remembered us. She is a young oncologist but has a very sincere nature which was very comforting. She explained that she remembered thinking how hard it must have been for us being in the position we were in and that mothers know best. I was very relieved to find that Dr Moore was not like the other doctors I had dealt with in the past. Monash is also only 5-10 minutes away from us. They have built a cancer wing for pediatrics and it was very nice in comparison to our earlier experiences of cancer care in Australia. Dr Moore said she will contact Dr Modak for Dylan’s records and his recommendations. She told me she would be foolish not to utilize the advice from Dr Modak. I then got an email from one of the nurses who delivered a lot of Dylan’s chemo at RCH when he was first diagnosed, saying she is now working at Monash and will be making Dylan’s work up schedule and she can’t wait to see us! I am so relieved. A full baseline work up will be done in the next 4-8 weeks allowing time for Dylan to settle into school, as the work up will mean 4-5 days off school. 

We have started on Dylan’s dental care here too. We see a community dentist who has already done a cleaning and filling and will work with him over the next 12 months on filling the rest of the fillings in almost every tooth. He is on high fluoride toothpaste and tooth moose to try and repair the damage caused by the chemo. X-rays revealed the usual short roots on the teeth that chemo is known for, but also he has an impacted tooth. As his dentist works on his fillings we will wait for an orthodontist referral at the dental hospital in the city to see if it needs to be surgically removed or if it can be left alone. This referral can take a few months to get, which is fine since he is in no discomfort by it. 

School, the next big hurdle had me stressed out to the max. We decided on a high school quickly, given the area and that we knew kids going to the school. After visiting the school and seeing their wonderful music program, the deal was sealed. I knew it was the right one just by the native trees and plants that enclose around the school, the smell was so fresh and so Aussie :) Cain has 12 credits from New York towards his VCE so he was able to go straight into year 12 as he only needs 16 credits to graduate (in other words he only needs to make 4 credits this year) He of course choose music in his curriculum, along with psychology, business management, math and mandatory English. Cain continues to aspire to going to VCA (Victorian College of the Arts) after he completes year 12 at the end of 2013. Cain settled in fast, a week last year at school as a year 12 orientation and he had his phone blowing up with texts and calls, and all of a sudden it went from Cain being home all the time to, see ya mum! He already has a girlfriend and I think he is pretty content with life right now. It’s actually so awesome having an 18 year old…he’s a legal adult here in Australia. I thought I would freak out when he grew up, but I love it now. 

Dylan has been down in the dumps, it’s hard for him to understand the concept of time being a huge factor into our lives changing here. He thought when he left New York he would instantly have this “new life” I think. He struggles with boredom, but that was the same in New York too. He had an orientation day at school, year 7, and he came home in tears, it broke my heart. He said they encouraged him do sport and he couldn’t, but they kept saying to give it a go, then he felt embarrassed not to, so he did and then he was in lots of pain. Between then and the 6 weeks until school officially started I was a mess with the worry of how Dylan was going to go at school. Well, he started last week and I am in total shock. He has done brilliant! Up early, showered, teeth brushed and lunch made! Under my advise, sport has been removed from his curriculum and replaced with an extra home economics class or Japanese class. As you know cooking and the Asian culture is Dylan’s keen interests so he is very happy with this arrangement. He goes to school with Jenni’s nephew Max, and they are good friends which has made the transition even better. Yesterday he told Cain to keep doing whatever it is he is doing cause he is making him popular LOL. Cain said what do you mean and Dylan said well everyone keeps asking if Cain with the tattoos and plays bass your brother? And when he replies yes they smile and say, cool LOL. Dylan came home last night with some English homework, brainstorm as part one and write your biography as part two. Dylan huffed and puffed and gestured the sheet of paper to me, saying that he can’t do it because it doesn’t apply to him and the teachers don’t understand, that they got frustrated with him. I looked at the paper. Seemed simple enough, and Dylan has a great autobiography to write about! I tried to explain that although some questions don’t apply to him he can improvise. I could see why he frustrated the teachers, he was frustrating me! Then I realized that I could tell he really did want to do the homework but he didn’t know how. But it was so simple, how could he not know how? So I looked at the questions again, read them twice over, then it hit me! These were some of the questions:

·        Have you spent time with your grandparents? What are your best memories of going to grandma’s house?

·        Have you had a very best friend? What adventures have you shared?

·        Did yours aunts, uncles or cousins make time to have fun with you?

·        What was the best family vacation you went on?

·        What is unique about your family? Does your family have holiday traditions?

Poor kid. He was looking at the questions differently to everyone else, he was looking at them as a “normal childhood” and he didn’t have that. So he just made up his mind that he couldn’t do the homework. Best friend died in 2009 at age 13, can’t remember much of my cousins or grandparents, etc, etc. So I then had to explain it to him differently. Dylan you have the most interesting story to tell! We may have never been on an official family vacation but we have been to America and traveled a bit around there at various times. You may not have seen your cousins but you have 22 of them and you are re-connecting now. Don’t you remember when Nana visited us in New York, and how she had a photo taken with Elmo. And we are a very unique family, not because you have cancer but because of what we did, we raised money and went on the news and in the paper, you met several celebrities and even went to the movies with Nicole Kidman! I explained his biography is here, right here on this blog, over 500 postings…writing an autobiography is easy. After an hour in his room he proudly came out and said he was done. The only other things he has said about school is that he feels he is too old for the kids (he is 14) and the kids he is with are 12. In the same breath he confessed he felt embarrassed because he found it hard to write as fast and keep up with the work. I explained how hard it would have been in year 9 and unfortunately year 7 is best for his academic needs right now. I also reminded him that education is not mine or dads priority for him right now, that his happiness and social needs are the priority. I don’t care if you come home with all F’s as long as you have a smile on your face Dylan. His teacher called and we had a chat, she said she will try and add him to a year 8 or 9 class during sport to do Japanese or Cooking. I told her not to push him too much, to remember he is hard of hearing and this is a huge change for him. I think it’s going to be ok.

Next on the list is trying to get on top of all the bills! School has cost so much money, school fees, uniforms, books, more books and now photo and formal and camp money! Geeez! Then there is a huge electricity bill and my car breaks down all the time. It’s a normal life basically I guess. The usual stuff, it’s nice to be this normal. 8.5 years Dylan has had cancer for. July 26th will make it 9 years…who would have thought after he was given 2-12 months to live in 2005. If you visit my Facebook you can see photos of Dylan and life back home in Australia, click HERE