Team Hugo - Update #2
11 May 2015Hi All,
As some of you are aware, we were able to bring Hugo home just before Easter which is fantastic news. Hugo has responded very well to the first phase of treatment which means he has been classified as ‘normal risk’ and is able to have most, if not all, his treatment in Wellington over the next three years – provided he keeps responding well.
This also means that, based on what we know now, he is on track to go into remission. This can change, but again based on all the information we have to date – there is no reason for this not to happen. So keep it up Hugo!
We are very grateful to the amazing staff at Ronald McDonald House and the Children’s Haematology and Oncology ward (CHOC) in Christchurch who both provided such supportive environments – but there really is no place like home and we are all loving being back together as a family.
Thanks again for all your support, it really has helped us through what has been an intense couple of months.
The details...
Hugo has completed the ‘induction’ phase of his treatment and a Bone Marrow sample was taken on the last day of that phase of treatment and sent to the U.S for testing. The results indicated that there were no detectable Leukemic cells in that sample. This is the best result we could have hoped for and means the chemotherapy has been very effective in treating Hugo's Leukaemia to date.
Unfortunately, it does not mean that the Leukaemia has completely gone from Hugo's body as they know that if he stopped receiving treatment at this stage it would come back – but it does mean he is able to be classified as ‘normal risk’, as opposed to ‘high risk’, and that his continued treatment is able to be tailored in line with that.
Future treatment...
Hugo has three years of further chemo ahead of him which is standard for treating children who have the same categorisation as Hugo. The types, intensity and timing of the chemo will vary – but we are generally at the hospital at least once a week and this will continue for most of this year.
In the next few months Hugo has three 8 x week blocks of treatment. The third block will be the toughest. This will be very intense with some heavy chemo and it is likely Hugo will lose his remaining hair. But at least it will grow back unlike Daddy’s ? For us that intense block is scheduled for July/August.
How’s Hugo?
Hugo continues to astound us with how he is handling what is an arduous journey.
Hugo now has a ‘porta cath’ which is an intravenous access point that he has had surgically inserted in his chest. We call it his "magic button." It is an amazing contraption as it sits under his skin which means he can bath easily (compared to his time in Christchurch where he had a permanent line in his arm). Now his I.V Chemo is able to be administered through the ‘magic button.’
Before each treatment Hugo has to have a ‘finger prick’ blood test. While he can naturally be very upset when he gets poked and prodded, he handles it with good grace and is back to his usual happy self relatively quickly. It is very hard for Mummy and Daddy though!
Risks for Hugo going forward...
The chemotherapy will suppress Hugo’s immunity – so for the next few years one of the biggest risks will be Hugo picking something up from the someone he comes into contact with. The big three are, Measles, Chicken Pox and Shingles. Therefore we rely on 'herd immunity' which is that the people Hugo mixes with are immunised. As a family we cannot live in a bubble and protect him from every bug out there, but we do need to be vigilant and do our best to ensure that Hugo mixes with people who are well. We have to ensure there is lots of hand washing as a family and if anyone is handling food that they are giving Hugo we ask that you please wash your hands first.
Every time Hugo gets a temperature he will be admitted to hospital for immediate I.V antibiotics, so we keep a close eye on his temperature.
Thanks to those who helped us in Christchurch...
Below are some photos of Hugo. Hugo is very into trains and we gifted to RM House and CHOC a train set each from Team Hugo so that other little boys will have a train set to play with. Thomas the Tank Engine and his friends provided great support for Hugo in Christchurch. We also gave the wonderful nurses and Staff at CHOC some Easter eggs to say thanks.
Super Siblings...
And finally a shout out to Hugo’s ‘Super Siblings’. Eva and James continue to show immense kindness to their little brother and they really are making the journey a bit easier for him. They are also helping Mum and Dad when they can see things are a bit tough and for that we are really grateful.
Thanks Team Hugo...
We are lucky to have “team Hugo” – being together at weekends in Christchurch helped Hugo immensely and your support continues to help as we juggle Hugo’s treatment requirements and the childcare required to keep ‘normal’ family life going. It is a tough journey – but you have all helped us along the way – thank you.
Love
Dave, Maree, Hugo, Eva and James
