Dear All, Sorry we have not been blogging lately, we have been very busy helping Josh get along in his quest for a healthy fulfilling life!! :) But... We do have some great news to lift the spirits of you all. Josh was meant to have Intra Ocular Chemo last week, the first one in Australia. Joshua's Opthalmic Surgeon used the Ret-Cam to take photos to see how the tumors were responding to his normal rounds of chemo. To his, and our amazement.... The tumors have decreased by 75% in size. This has been the result of 4 rounds of chemo. 3 days a week for 4 months. Now... The oncologist and opthalmic surgeon suggest 2 more rounds of chemo, and they believe, everything should be well after this, keeping in mind, we just want to keep Josh's only eye he has left. Mum and Josh will have a visit to Oncology this Wednesday, and the following week, we have chemo again.... All to make lil' Josh better :) We all hope everyone is doing well, and always keeping a smile on your faces :) Bless you all :) Lots of Love from, The Johansen Family xxx ... View more

On the 11th of June, Josh will be the first Australian Retinoblastoma sufferer to undergo Intra-Ocular Chemotherapy. This involves Carboplatin being injected into the sclera of the eye. This form of treatment has been widely used in the US, and Josh will be the first Aussie to experience this. Im scared. Im scared he will be in severe pain. The thought of a needle going into my little 4 year old brother's eye is terrifying, and not to mention how it must burn... Im really really scared for him. But we have to think positively. Josh needs this therapy as he has a rare recurrence of cancer in his eye. His left eye was enucleated when he was 9 weeks old. Around 8 months old he was diagnosed with Bi-Lateral RB. Since then, the tumors in his eye have grown in the gel sac of the eye. There, they are not responsive to cryotherapy or laser therapy, thats why he has been having IV Chemo for the past 3 months now. Josh's Opthalmic Surgeon and Oncologist suggested the Intra-Ocualr therapy, and it begins on the 11th of June. We only get one shot at this type of therapy. It cant be repeated. If it doesnt work, Josh may very well have to have Radiation Therapy, or even worse... His only eye will have to be enucleated, leaving my little brother completely blind. We hope and pray to get good results for Josh, because there is still so much of the world for him to see... :) Love from, The Johansen Family. xx ... View more

Its really good to see Josh eating so much today!! He had about 7 bowls of Nutri-Grain cereal, Peanut Butter on toast, about 3 potatoes smothered in Garlic and roasted, and a bowl of rice. This might seem like a small amount, but usually Josh only eats 2 things all day: A bowl of popcorn and a handful of pretzils. It seems he loves all things salty; not good for the arteries but hey... it makes him smile. The reason he has been eating so much, is because the oncology nurses gave Josh steroids to help with his allergic reaction to the Carboplatin for chemo. Obviously, a side effect of this, is a big appetite. One of Josh's "big buddies" at oncology, was on steroids to deal with his chemo, and he has since eaten "like a horse" his mum says. We dont mind if Josh eats heaps, considering he has lost roughly 6 kg's since starting chemo. He now weighs 15kg's (bit small for a 4year old), and his spine sticks out of his back, and his ribs poke out of his belly. BUT he still manages to smile :) Love from The Johansen Family xx ... View more

🙂 🙂 JOSH'S TUMORS HAVE RESPONDED TO CHEMO!!!!! 🙂 :) WOW!!! Finally some great new for Josh. Today he had an examination under anasthetic (EUA). The opthamologist came out with a beaming smile, and said, finally, after such a long time, Josh's tumors in the gel sac of his eye, are 50% smaller than his last examination, which means, his chemo courses are working. Thank God!!!!! :) We have 1 more day of chemo tomorrow, then in 3 weeks, another 3 days of chemo, then during the 3rd week of chemo, Josh has another EUA. Dr Donaldson (Josh's opthamologist) is suggesting they inject Carboplatin (Josh's Chemo drug he is "unfortunately" allergic to) locally into his affected eye. Hopefully, this works, as it has only been administered in America, and Josh will be the first candidate for the treatment in Australia. Today is the first day, in about 1 year and a half, that we have had some good news as to how Josh's cancer is responding to treatment. We are one lucky family!!! Love from The Johansen Family xxx ... View more

Today was the first day of Josh's 3rd cycle of chemo. Today we found out that he has an allergic reaction to Carboplatin. It gives him a severe cough, which can lead to swelling of the throat and difficulty breathing. Josh also gets welts on his body from Carboplatin. Its really sad: We have to see Josh get so sick, to make him get better. Tomorrow we have an E.U.A, and unfortunately, we were told today, there is a new family joining the hospital, and the child is only 12 weeks old. Im really proud of mum, you know, she always welcomes new families in the kindest possible way, and she is always there to support them when they need it. I know, being a sibling of someone who has Cancer, its really strange, everything that once mattered, seems so trivial now. I know, in a way, i have matured a whole lot more, being 19 is rough as it is, but im not the type to turn a blind eye on my family when the going gets tough. I don't know how mum does it. She see's her only son, going through all of this, and she still has the strength to put a smile on her face. She is definitely someone whom i admire, not only for her kindness, but also, the strength and courage that lady has, and she holds the family together. Thankyou Mum... Love from The Johansen Family xxx ... View more

Today we ventured to Luna Park!! I tell you what, it was a really really good day. I had an awesome day because Josh had the biggest smile on his face for the whole day. Josh's fav part about today was, the giant slide in the coney island funny land. He was screaming, literally, SCREAMING with joy!! it was so funny!! he kept putting his arms up in the air and yelling out to mum saying WOOO HOOOO HEY MUM LOOK!!! mum said he had the biggest smile on his face that she had ever seen!!. The fact that josh was soooo happy, made it one of the best days we have had as a family in a very long time... He also liked those tricky mirrors, the ones that make you look short or tall. Ah... it was an excellent day indeed. Just thought id share that with you all, because its always good to hear that someone is smiling Love from The Johansen Family xx ... View more

Fantastic news!!! Josh does not need a Platelet transfusion!! This is such a relief, all the worries of the body rejecting the transfusion have disappeared :) We're back on Wednesday for our 3rd cycle of Chemo in the afternoon, and in the morning, we have an EUA for Josh, checking the response of the tumors to the Chemo. Hopefully, they have responded well. Wednesday will be a very long day, from morning to night. The EUA roughly takes half an hour, but the wait for the Anasthetic team is the tough one. Josh has to fast from about 2am til about 2pm when his EUA is finished. I love it when he wakes up from his EUA, the first thing he asks for is chocolate... not recommended by nurses, but it makes him smile!!!! Josh has found a taste for Maggi 2 minute noodles. Its so funny, because we all have a nutritious meal, and here's Josh... With his 2 minute noodles. God bless him hahaha he is a sweetie!!! A good thing is, Josh's Port-a-cath in his chest is going really well. We were a bit skeptic at first because he has only ever had the Hickman line which is accessbile outside the skin. Unfortunately, the port is accessible by inserting a needle under the skin to access the central line. So far, Josh has been doing alright with it, and im SO proud of my little brother!! Bless his soul. Thanks everyone for your thoughts, Love from The Johansen Family xx ... View more

Hi Everyone!! Just wanted to let you all know... Josh has been pretty sick the past few weeks, hence the reason we have been absent from the site. Josh has had reactions to Carboplatin, and now, again, has no hair. He has had joint pain in his right arm and wrist, and has also had a fever of above 39 degrees (poor little guy)... The Carboplatin gives Josh large welts on his body, especially on his head. If he gets itchy, and scratches, a big white lump appears on his skin, it looks like a large mozzie bite. Tomorrow (Friday) we're back to Oncology at Westmead Childrens for a check up. Josh may need a Platelet transfusion. His current levels are 27, but usually are well over 100. Last week he almost needed a blood transfusion, because his Haemoglobin Levels were quite low. We have chemo either next week or the week after again, and Josh is in for an EUA on wednesday, to see if chemo is working on the Tumors in the gel sac of the eye, as he has Vitreous Seeding. Hopefully, all goes well with this, and there has been a sufficient end to the growth of the tumors. Its great to see that there are more members on the site, its fantastic tohave a great support network. Thankyou all, and best wishes with every one of you. Love from The Johansen Family xx =] ... View more