Hi everyone,

The good news continues...Tim saw his specialist a couple of weeks ago and his blood results have been pleasing. The daily treatment has affected his platelet count and his liver function, these are the only areas of concern, but are certainly expected and nothing to be overly concerned about at this stage. Tim has made remarkable progress and has been given the green light from the medico's to return to some part time work next year. This is very encouraging as it is another step towards leaving this dreadful disease behind us all. Really, the only reminder now is the fact that he has to pop chemo tablets everyday (and for Tim, he is still anxious that his hair has not come back properly). When I think back to Christmas last year, I can not believe all the goings on in the last 2 years. It really does seem like a bad dream now and we are all confident that the worst is well and truly behind us.

I want to wish everyone a very Merry Christmas and thank you again for the on going support you have given me and my family. We feel truly blessed and grateful to have Tim still here smiling, children who are thriving & happy and friends & family who have listened, cared, loved & supported us. In situations such as this, things can easily fall apart, but because of you all, we are united stronger than ever and happier then ever.

Have a wonderful festive season.

All my love,

Andi

Update 30/09/10

Hi everyone,

Just wanted to let you all know of some further developments.

Yesterday Tim met with Professor Andrew Grigg at the Austin for his usual check up. Blood counts and tests are all good. As some of you might be aware, a bone marrow donor search commenced last year for Tim. This is protocol for acute lymphoblastic lymphoma/leukemia suffers, as relapse is a high possibility for most adult patients, and if it does occur a transplant is required immediately. As none of Tim's siblings were a match, a search was conducted nation wide and then overseas. A match has been found for Tim in America, so it is nice to know that even if the worst case scenario eventuates, there is a plan of action for a cure.

Tim and I were very curious to know if they was a danger period for cancer cells to begin to reproduce again in his body. We were anxious to know what would happen at the end of all the oral chemo and if that might be a time to be on alert for symptoms. Prof Grigg explained to Tim that the cancer cells could begin to reproduce at any time even whilst taking chemo. However, in Tim's case, it has been for quite some time that his body has been producing normal, healthy cells, and because of this he estimates Tim has a 20% chance of the cancer rearing it ugly head again, but the percentage drops the longer he stays clear. He also explained to Tim that most adult patients do not make it through the intensive intravenous chemotherapy phase that he went through last year. In fact he labelled Tim as his NO. 1 draft pick!! He is in the top 10% of patients world wide to get through his treatment protocol to present. An absolutely brilliant accomplishment and a true testament to his positive frame of mind.

This news has helped subside his daily side effects and given Tim an enormous boost and the will to continue with the treatment for a further 18 months.

He is thoroughly enjoying the Gawler program and gaining so much from Seikan, who facilitates the course. He is a wealth of health knowledge and has so much spiritual wisdom that Tim is completely inspired and energized at the completion of every session. John has thoroughly enjoyed and benefited from being in the presence of Seikan (and somehow I think the small group might benefit from having the Hamilton lads in there to share). It is so wonderful for father and son to bond and connect in such a special way...

If you did happen to watch the documentary on Jim Stynes, then you have seen a snippet into our world too. Tim and Jim have travelled a very similar journey, in fact so similar that it was difficult for us to watch. Even though they are being treated for very different cancers, they have both chosen to give themselves the very best chance at recovery through integrating their treatment (white coat & natural therapies) and they both have that incredible frame of mind. As hard as it was for us to watch, we were completely inspired by the Stynes family and the dedicated support of his friends especially Jules. That type of support goes a long way and is paramount to the recovery of a patient.

I hope that you are all aware that you are Tim's secret weapon.

Thank you......

Andi

Hi everyone,

We have had an exciting time since my last update.

Thanks to the generosity of Danie & Jo Stammis, Hendy & Steve Moodie and Barb & John we were able to trip up north and escape the freezing cold of winter in Melbourne for just over 2 weeks!

We took the kids to Darwin for 5 days and stayed with our friends Hendy & Steve in the beautiful Fannie Bay. Darwin was sensational - 32 degrees everyday and heaps of super fun activities for us all (from baby croc handling to 10 pin bowling)! Tim coped with the heat well as it did cool down at night which was a relief!

From Darwin we flew to Bali and stayed at the delightful Honeymoon Guest House in Ubud. This is Barb & John’s regular haunt and we were very glad to be met by them both when we arrived in Ubud.

Bali was a cultural shock for me at initially as this was my first visit to an Asian country. My jaw dropped in disbelief on the taxi ride from Denpasar to Ubud as I watched the chaos unfold on the road before me. Motorbikes everywhere darting in and out, most with no helmets, some with a family of 4 squashed on (baby attached by sling!) and all, it seemed, with a lot of patience and consideration of other motorists…so incredibly we arrived at our destination, perfectly safe!

Bali was a real time for healing for Tim. He found space for daily meditation (lucky to have the guru on hand!), had regular massages, was able to swim (hooray! no PICC line) and also enjoyed some relaxation and reading by the pool. It took him some time to adjust and let go (he was concerned about getting sick from the water or picking up something from somewhere) but when he finally embraced his surrounds, he loved every second of an unforgettable family holiday. He even hired a motorbike for two days...much to my horror!! Another wish now ticked off the 'to do' list...(thank goodness!!)

We were very lucky to have the magical experience. Joshua and Benjamin travelled perfectly, loved both Darwin and Bali and were no trouble at all. They were in the pool most days from sun up to sun down and managed to dodge the dreaded Bali belly.....(Tim & I not so lucky....only a mild case though!)

Tim met with Dr. Turner last week and the good news continues. He is making good very good progress on the chemo tablets. He is now on the highest dosage and managing this well. Same old side effects, but they are becoming a way of life. Dr. Turner commented this visit that Tim's liver and kidneys are showing signs of repair, which is amazing considering he is still on treatment daily. This was some very positive news.

Tim has tried to have a beer, but unfortunately his body is completely rejecting alcohol at this stage. One stubbie = massive headache and knocks him for 6, so he has decided that it just isn't worth it.

This week we booked Tim into the Gawler 8 week follow up course which will be run by Seikan the Zen Monk. This time John will go as Tim's support person which is fantastic. The 'Living Well' program, aims to develop, deepen, and share healing methods and experiences through an interactive support group program. It will run once per week on Thursday mornings at the new Gawler Centre in Hawthorn, starting the 2nd of Sept. As you can imagine both Tim and John are looking forward to this and in particular Tim, as he faces new challenges in adjusting to his new life. A friend and cancer survivor shared with Tim the difficulties she had in knowing when her cancer ended and she began again. Tim identifies with this comment well as he deals with a closer to 'normal' life again, on the maintenance phase of the treatment. Tim does have moments when he has flashbacks to his diagnoses and some dark times in the oncology ward, but he is beginning to move on and leave these horrible memories behind. The 'Living Well' program has come up at perfect time for Tim and I know he will gain so much from attending.

As for me, I am enjoying my teaching and finally feel like I am back into the swing of things again. I love my time with the boys and adore watching them thrive. Joshua is doing very well at school, loving Auskick and has just taken up basketball which he takes as seriously as the former.....and that's intense! Ben is a friendly chatterbox who talks to everyone he sees. He is following in the exact footsteps as his big brother and he is very excited about starting kinder next year. How time flys!

Hopefully the blog updates will remain infrequent from now on......as they say, 'No news is good news.'

Love Andi

Update 24/06/10

Hi everyone,

Tim saw his Haem. specialist last week and the report again is very good. His blood counts were good, so this has meant another increase in the dosage of daily oral chemo. He seems to be managing this well the only side effects are fatigue, neuropathy in his feet, occasional headaches and nausea. The chemotherapy has damaged the nerve endings in his feet and he does suffer from a horrible numbness, tingling and pain in his feet. This could be permanent, but it may go over time. Tim finds it quite uncomfortable, as there is no relief from it, but he feels it is a small price to pay considering...

We have just discovered that Robbie, the fellow leukemia sufferer that Tim made great friends with, died in January. As I may have mentioned in an earlier blog, Robbie's cancer had spread to his spine and left him a paraplegic late last year. He was receiving treatment at Royal Talbert in Kew and this is where Tim made contact with him over the phone briefly, but he was unable to speak for long. We had been concerned for his welfare for some time and we were devastated to hear this news last week. He was a tremendous guy, who we thought would get through this, as he was positive he would. Even though we had feared the worst for him, as he had not been in touch, we were still so very shocked and upset.

Tim has still been able to maintain many of the Gawler principles that we learnt on the retreat. His diet is excellent, he still juices and meditates regularly and has a fabulous frame of mind ( which is amazing, considering the passing of Robbie and now 7 of our fellow Gawler colleagues). He has really turned his life around and has been 100% committed to getting himself well again. I still sometimes have a little cry, when I think back to the day of his diagnoses and all the subsequent complications with almost every organ in his body. He has certainly defied the odds and sometimes I cant believe he is still here....and he looks better than ever. I think he is better than ever in every way, so for that I feel very lucky.

Thank you for all your continued support.

All my love,

Andi

Update 14/05/10

Hi everyone,

Tim has just had another great report from Dr. Turner this week! He could not have asked for a better birthday present on Wednesday, when Turner gave him the good news that he doesn't have to have any more intrathecal chemotherapy (that is the chemo injected into his spine!). An executive decision was made.....all parties feeling that it was a bit of over kill at this stage, considering that his previous bone marrow biopsy's and CNS fluid has been clear for some time now. Tim is relieved about this as he really found the procedure so distressing.

Tim did notice the impact of the increased oral chemo dosage this last month. He has suffered some nausea and headaches, but most of all he has struggled with fatigue. It is all ok and nowhere near as debilitating as it had been in the induction, re induction and consolidation phases of the protocol. His blood counts have dropped, so his immunity is still compromised and all the necessary precautions are still in place in terms of hygiene and keeping some distance from people with colds and viruses etc. His drop in red blood cells explain the extreme fatigue he experiences in the afternoon. This is just how it will be for the next 2 years. It is still very necessary for him to have a huge amount of rest...something that I know he will struggle with as time goes on. But, there have been days where he can literally not keep his eyes open by about 2pm...so he has no choice. He must nap/rest.

By the way, he is now at week 46 of the protocol. I am not sure how many more to go...but I am thinking about 90!!!! We are really getting there...

We took the boys fishing for the long week end. One of the things on Tim's 'to do' list was to take the boys to Eildon to fish in the pondage. So, we just did it! (ps. the best he has looked in a long time...don't you think?)

Love to everyone,

Andi

Update 23/3/10

Hi everyone,

Well Tim finally finished all his IV chemo, however he feels he is really 'limping to the finish line.'

As expected, the final round of chemo left him bed bound with nausea, headaches and and in a fair amount of distress. I won't go into all the details, but briefly let you know that Tim had a terrible experience with a lumbar puncture this time round, where he was in so much pain and anxiety that he was in tears for fear he may have walked his last steps. Thank goodness the numbness in his legs disappeared however, action needed to be taken. We spent some time talking to other doctors and eventually went to see another haematologist outside the Austin for a second opinion. It was a great exercise to gain further clarification on the future treatment Tim requires. Unfortunately, lumbar punctures are a necessary part of the next 2 years, as the CNS (central nervous system) is a common place for relapse. The Austin has been great in addressing our concerns and have promised Tim that he can request his preferred doctor for the procedure in the future.

As we thought, Tim did require 4 blood transfusions and 3 platelet transfusions after the final round of IV chemo. It really did take him some time to bounce back and finally have that PICC line removed from his arm!!! Hooray!! He was kissed by all the nurses and applauded by the fellow patients when he walked from Day Onc for the final time. Certainly, a huge milestone! We are all so proud of what he has achieved. It is amazing what the medical world can do now with all the treatments on offer to help save a life. All that along with his very special, positive frame of mind has got him to still being here right now and with lots of hope for a cancer free future. We are reminded how lucky we are to have Tim responding to all forms of treatment so well, since hearing that more of our Gawler friends have passed. Four beautiful husbands and fathers and one gorgeous wife could no longer maintain the battle. It has been very difficult for Tim and I to say goodbye to 5 friends in the space of 2 months. We have had to mourn and then refocus back on our goal. A complete emotional roller coaster.

Tim has now recommenced chemo daily, but in tablet form. He has struggled more than he anticipated, having headaches and nausea. He has a total of 9 chemotherapy tablets over 7 days, comprising of 2 x methotrexate and 7 x mercaptopurine. These tablets are now a way of daily life for the next 2 years. We are hoping that Tim's recent side effects are part of an adjustment phase and not an indication how how he might feel over the next two years. Although, Doctor Turner has pre warned that if Tim copes well with the tablets and his bloods are all good, then an increase in dose is likely.

Just have to take it one day at a time...

Well, that is a wrap.

Lots of love,

Andi

Hi All,

January was a difficult month for us all. Tim struggled with the latest round of chemo. His hair has fallen out again and it knocked him for six and left him struggling to keep his mental edge. Chronic nausea daily with the pounding headaches led to Tim having a break down of sorts late Jan. The tears flowed and flowed as he has had enough. Thirteen months now of consistent treatment that makes him feel so unwell, yet has kept him alive. I just don't know how he has done it. He fronts up to Day Oncology almost daily with a disposition that is truly remarkable. He is still upbeat, humorous and so very kind to all that he encounters...still...of course...but he is tired . He wants to be a dad with energy, he wants to work, he wants to spend time with his loved ones and not feel like shit. Hopefully, these intense side effects will end with the intense treatment. This week he is having a repeat of the treatment in January, 10 infusions of chemo and a lumbar puncture and then the PICC line will be removed, all going well and he doesn't require a blood or platelet transfusion.

Joshua started school last week, which was a thrill for us both. He has loved every second of school life and is extremely happy. I returned to Burke Hall too, which has been fabulous to be back doing what I love and getting my mind off cancer for a while.

Thanks everyone,

Love Andi

Update 19/01/10

Hi All,

We have had a very hectic couple of weeks. Tim recommenced chemo on the 4th of Jan. The very intense week began with 2 infusions of chemo through the PICC Line and a lumbar puncture on the first day and then continued daily with two infusions of chemo (Cytarabine and Teniposide) for a a further 4 days. We sincerely thank Macca, John, Dale, Callum and Sarah for taking the time out to sit with Tim during treatment. The days are long and depressing and having company makes the time go much faster and helps to relieve the angst and sadness that can consume you in Day Oncology. Tim honestly feels this whole journey is one big mind game and having distractions in day onc gives him a mental edge....even though he is terribly forgetful at the moment!

All the usual side effects presented post treatment and Tim laid very low for 2 weeks. This time Tim seemed to be knocked about more and upon reflection we feel the heat had a big impact on his well being. It was difficult for Tim to find comfort on these days, even when indoors and horizontal with the air con working overtime. Tim finally turned a corner when the cool change came through and has been in a better way since.

We have unfortunately had news since the New Year clocked over, that two of our 'Gawler' friends have passed. The news hit us both hard, as we have shared in their journey and left the retreat feeling empowered and with the hope that everyone can be healed. Unfortunately, our two lovely friends were very, very sick and we did know at the time of the retreat that this was something that we were to experience...the loss of friends. Very difficult to deal with, but it was pleasing to hear that both Brian and Karen went peacefully and are now pain free.

We are counting down the days to Joshua starting school. He is very excited and prepared. Got the uniform, been fitted for shoes, acquired all the stationary (can you believe preppies need a calculator!), is in a class with his two best mates and has a lovely teacher. I am also looking forward to my return to the classroom (drama studio!) and am currently in full swing of the College's production which hits the stage in March.

We are feeling positive that this year will bring much more happiness than the last. It is so nice that some aspects of our life are now relatively normal. Tim will have a repeat of the treatment he just received in the first week of Feb and then the PICC line will be removed...finally.

Thanks to everyone for their continued support. The 6th of January marked 12 months to the day since Tim's diagnoses. We are getting there slowly and are extremely grateful to all our family and friends who have stuck by our little family the entire time. It has been a roller coaster and I am personally so grateful to all my beautiful friends who have taken it upon themselves to do special gestures to help bring a smile to my face. It has been an extraordinary year and I thank you all for having the guts to truly listen to what it is like to live with this disease.

With love,

Andi. xo