We have some big news awaiting us this week. But first, an update from where we last left off as we were having a break on the Gold Coast post Auto Stem Cell Transplant.
Long story short, Dan didn't go into remission! Bugger! Plus when the doc gave us the news he was particularly blunt about our options at that point. We left feeling that we were coming to a very scary point in our journey. Dan was told that he would be undergoing 4 weeks of radiation to active nodes in his chest and neck. If that didn't work we were without options. WHAT!!
We were shattered, scared, frightened, angry...I could go on but you get the picture.
We went home and Dan began putting 'things' in order. You also know what that means.
Life from day to day for the next few weeks was particular terrifying. We were facing our worst fears. I hated him being out of my sight, I kept touching him and holding him. I was scared.
After 4 weeks of radiation we had to wait 8 weeks for results as radiation continues to work! Went back to see doc and our usual doc was gone! A new guy, now head of Lymphoma Clinic, Dr Gill was in charge and what a different story he painted for us.
Whilst we were waiting for results from new staging PET scan Dr Gill asked if Dan would consider an Allogenic Stem Cell Transplant (what was a bone marrow transplant in old terms)?
Hell yes!! We are always open to options, we were not prepared to give up yet!!
So, Dan's sister was tested but didn't match so they began the search in all transplant registers. None that matched in Australia but 10 possibles in Germany!
Meanwhile we find out that whilst the radiation worked on the spots they were zapping other tumours popped up...in lung, liver. Yep, shattered again but not completely unexpected as Dan's symptoms, (coughing, night sweats etc. ) had returned. Crap on a cracker!
6 weeks ago Dan and I were told that he would begin a new chemo regime GDP, to try to halt the progress of the cancer and even reduce it before the transplant process began.
Dan has now completed 2 full cycles of that chemo with 2 stay overs in Ward 2E due to infection and then last week with massive fatigue, light headedness and ringing in the ears. All from the drug, Cysplatin. We now know Dan has permanent hearing loss due to the chemo but the other symptoms have dissipated.
Dan can not have Cysplatin again.
So, that kind of brings us up to date.
Tomorrow we head off to the Royal Brisbane Hospital to see the transplant team there to further discuss the Transplant process etc. We know that they will be using a recently off trial drug called Brentuximab (Adcetris), http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/brentuximab/brentuximab.
Dan will have 4 cycles of this drug over 10 weeks prior to the conditioning chemo and then the transplant itself. But that's about all we know at this stage. They have all the drugs ready to go, we just need a donor to be matched as best as possible.
Wednesday, Dan has another PET scan to see if this recent GDP has done it's work on the Lymphoma and then we get those results Thursday. This is vital in moving forward with the transplant. If Dan hasn't responded to the GDP, I'm not sure how confident they will be about going forward.
So, a pretty full on week for our family.
Next week we hope to be heading up to the Sunshine Coast for 2 nights due to the kindness and generosity of the Warwick Foundation, http://thewarwickfoundation.org.au/. Many thanks to Emma for helping organise this time for our family. Dan has found the Facebook page very helpful in support, and just chatting to other young people who are going through the day to day challenges of living with this disease.
I truly hope that when I next update this blog that I will have some positive news about the transplant. We both feel confident that the recent chemo has done some good, despite the hearing loss and other side effects. We have to remain positive, we have so much to look forward to.
When we began this journey with Hodgkin's Lymphoma we were so confident that Dan could knock this on the head with the first line of treatment even though he was stage 3B aggressive. We now know that everyone's journey is VERY different. It's bloody hard! Some days are darker than others and as you continue to fight, you become a bit, well, FLAT, is how I can best describe it. I have seen my husband transform from a quiet, tough guy to an emotionally reconciled man. I am so proud of him and all that he shares with me and others on this journey.
At the beginning we all thought we were tough enough to do it on our own. HUH! That didn't last long. You soon realise that there are some amazingly, wonderful, beautiful people in this world who are there, sometimes even those you don't even know! People who have reached out to us and touched our lives in so may ways, through sharing their stories, asking for or giving advice, and those who have helped with a shoulder to lean or cry. Those who have provided a meal to us without us asking. Those who have given kindly in the way of gift cards, yard work or caring for Isabella in the many times Dan and I needed to be at hospital.
There is no way we could ever repay these kindnesses, but we wish we could reach out and hold each and every one of these people. They will be forever in our hearts.
Dan, Isabella and I remain strong. We can conquer this together!
xxx
