Anniversaries, Birthdays, Holidays, and Happy Days

It’s been a busy few weeks since my last post and I’m pleased to report that for the moment it’s nothing but good news. It seems the benefits of the Chemo break have certainly paid off and our little guy is back bigger and better than ever which is so fabulous to see. I don’t think I’m speaking too soon but it may possibly be the most consistently good he’s been in just over 12 months. He has still tested positive to Coronavirus so his chest is still a bit crackly and as a result he has intermittent periods (usually overnight but sometimes a few hours in the day) of requiring oxygen but aside from that it’s happy days here in Suite 1 on The Variety Ward with a few gate passes thrown in. If he continues to improve in this way the plan at this stage is to discharge by the end of next week as long as we can get him off the oxygen. Hopefully he should manage to stay well and out of hospital until at least a week or two after they start the next round of Chemo which will be about 6 weeks away. I must say I’m really looking forward to having him home so well for a few weeks. Currently the pain has markedly reduced and he’s slowly being weaned off the hydromorphone but remains on the methadone. One of the theories of the increased pain from a few weeks back was that the hydromorphone was having a counter affect and was causing the increased neuropathic pain. This can be one of the side effects if patients are on it for extended periods of time. He said to me yesterday with that gorgeous big grin on his face that his legs weren’t sore anymore. It’s so great to see him happy and in great spirits after such an extended feeling of being unwell. Ed managed to make it home for a few hours last Sunday which he thoroughly enjoyed although found it a little difficult to share his toys with the not so little brother. On Tuesday he and I had a little movie date in Parramatta to see Gravity. It’s also been very busy here in Suite 1 with his fan club of hospital staff, everybody from the nursing staff to cleaners, volunteers, and members from the PR team coming in to visit our very entertaining and charismatic guy who holds court, ordering everybody about from the bed and capturing the hearts of many with his beautiful grin and cheeky sense of humour. A shift with Ed is now quite tiring not only to due to his visitors but him ordering you about and wanting to chat, play and joke around. He’s also had some great sessions painting with the play therapist and singing with the Music Therapist. In addition to the comeback kid making great gains, over the passed 3 weeks Pete and I managed an overnight stay in the city and a sneaky little dinner at Mr Wong’s. Tom, Isabel, Pete and myself enjoyed a couple of nights away at Shoal Bay over the long weekend and we celebrated ( for what seemed like an eternity) the 6th Birthday for Miss Isabel. Pete and I also celebrated our 8th Wedding Anniversary and tomorrow I’m off to the races so it’s happy days all round. Whilst it’s a fantastic lesson in living in the moment and enjoying these very precious and special times it’s all bitter sweet though as he’s scheduled to commence Chemo again in about 6 weeks or towards the end of November. In meantime we are ever so grateful to see our guy back. Here are a selection of pics from the passed few weeks: The Birthday that began in Shoal Bay image Continued on at school image And finished with just a small party of 27 kids image image And whilst some played pass the parcel, others enjoyed the food image and the good times image Meanwhile back at Club WestMed our little guy  entertains the first year doctors image Visiting the Chinese Garden image Helping with the party preparations image And when time permits, Paintingimage image The final pic is a great lesson to Pete and I about being careful who we arrange to sit with Ed over the Grandfinal long weekend. image

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3 thoughts on “Anniversaries, Birthdays, Holidays, and Happy Days

  1. God hes a trooper , still praying for a great outcome on his journey , happy photos , god and angels blessings xoxo Wendy and Phil Lankford

  2. Happy 6th birthday Issy, happy anniversary Pete and Ali and I was so happy to read your post ! Great news Ed has benefitted from a break from the chemo and you have had some happy days. Hoping to catch up with you next Sunday evening beautiful lady xxx

  3. What a lovely and well earned break from routine for you all and how fantastic for Ed to have legs that aren’t sore! Beautiful photos, keep enjoying the good times. 🙂

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