HOME AGAIN
11TH AUGUST
Brendan came home on Saturday. All up we had 2 weeks in hospital. Brendan is tolerating his new milk feeds well and has energy again to chat and play. Today he is saying he is hungry and is asking for food.
His doctors are very happy with his blood counts and have suggested we start having weekly check ups. We will wait to see if this will happen. On Thursday we will have Brendan's hearing further investigated. Hopefully we will have a better idea of how damaged Brendan's hearing really is.
Brendan's doctor told us that his new marrow has the same DNA as one of the cords, which is good news as this shows that the transplant is successful and Brendan has brand new marrow. "Out with the old and dodgy" I say.
Brendan is very excited about his upcoming birthday. He is counting down the sleeps. It is lovely to hear Brendan talking about his future.
Will keep you all posted.
Love Anna
posted by Brendan's Journey @ 3:52 PM
4 Comments:
NICE TO SEE YOU AT HOME BRENDAN AND ANNA
THANKS FOR YOUR COMPANY HOPE TO CATCH UP IN DIFFERENT CIRCUMSTANCES SOON
LOVE ALEX AND GAVIN
HAPPY BIRTHDAY
Fantastic news. Hope the birthday fairy brings you health and happiness. Cheers Ron, Sandra and the boys!
Hi Friends and Family of Brendan
I am Deborah and my husband is Mark – we have been mates with Anna and Richard for many years and have been following Brendan’s journey the whole way. I have made about a thousand phone calls and sent about a thousand emails and txt messages from the Central Coast NSW to Adelaide SA and we made a few trips to Sydney Children’s Hospital to keep in touch, wanting to know how Brendan is, wanting to know how the rest of the family was and wanting to listen, to talk and to help Anna however I could as her family took this very serious and very scary journey.
Whenever we could while Brendan was in Sydney, we visited both the Turnbull Ward at Sydney Children’s Hospital and Ronald McDonald house to see Brendan and his family. Mark and I were the ‘friends’ mentioned on the Blogg on the day of the transplant - we had our faces stuck to the window looking into the isolation room, watching in awe as Brendan received the life saving cells. We were lucky enough to be standing next to trainee nurses who were learning about the procedure, and with Anna’s permission, the head teaching nurse let us listen in on the general explanations - what a complex, precise, life and death procedure the stem cell transplant is!
After all the phone calls, emails, and txt messages over the last few years, and because of what I personally saw of Brendan’s journey, I wanted to tell everyone how much I admire how the family are getting through what they are going through. As Anna said once there’s nothing to admire, it doesn’t take strength or bravery – you just do it, you don’t choose to be brave, your son’s life is in the balance day in day out for months on end, he has many pressing needs and this is bigger than being tired or worried over anything other than Brendan’s journey, you just do whatever is thrown at you. Well I reckon that’s mostly right, but Anna and Richard you “just do it” with so much more dignity than you realise. You both are an inspiration, you don’t complain, you don’t expect or ask for more than what is fair and you do “just do it”.
You “just do it” with strength and respectability. Maybe you didn’t show me your selfish cranky sides (I don’t think either of you have one, or if you do they are only a little sides), but I am confident that the months and years of sleep deprivation and worry over Brendan’s life have exhausted you both, and I have never seen either of you put on a fake ‘brave face’, you both just got on with it. I think maybe you did grumble quietly once Anna, but I think that was the moment the full bed pan fell on the floor…
Then we laughed.
Neither Anna nor Richard ever asked for sympathy or demanded adoration for the way they were coping with their plight or any of that crap. Nor did they complain when they were sadly let down by promises not kept. You both admire your son’s ability to get on with the treatment; truthfully, he has a couple of role models who have taught him how to handle this situation with dignity and tolerance well beyond his years… I can think of a few adults who should be taught how to manage their difficulties the way you taught Brendan to face his challenges…
We, Mark and I, occasionally imagined how we might have coped if it was us, but it was not, and beyond just helping out a mate in their time of need, we needed to help as a way to say mercifully, selfishly, luckily it was not our child. Thanks Anna, and thanks Richard for letting Mark and I help. Letting us do the little bits we could along the way made us happier than you could imagine.
You have lived through a difficult time, it’s not over yet, but I’m glad you are home now. I have much hope for the future, but I don’t have a crystal ball, and the journey will probably continue for a long time, but we’re still here for you, maybe not as physically close, but I feel we are still close to your hearts! I know that saying “don’t worry, everything will work out” was the most annoying thing people said, as if you could just stop worrying… or you could influence the healing process beyond what the doctors were already doing… but it is what I hope for, dream of, long for. I won’t say it out loud, but under my breath I am screaming into the ethos “make it go away - make it all better forever, fix it NOW”. Congratulations on getting this far, and we’re still there for whatever you need, if I think of something I’ll offer or you can just ask…
While Anna and Richard were “just doing it” I have had time to think about their journey, one thing I have learned is that it takes a community to help a family member get over this sort of illness. It takes the kindness of strangers who donate to the foundations who pay for the flights to and from Adelaide. It takes more kind strangers to donate more money to cancer research foundations. It takes the valuable time of volunteers who work for camp quality, and for other charities that provide help and give wishes and holidays that include siblings. It takes compassionate skilled health care professionals, from the doctors and nurses to the psychologists, pathologists, pharmacists, paediatric specialists and so many more skilled specialists that my head spins. It takes fun loving play therapists (those people are nuts!), the paid and volunteer staff at Ronald McDonald house and at the hospitals, and the donations of heaps of burger buyers who fund Ronald McDonald houses coin by coin. It has taken so many hundreds of people to help Brendan on this journey that it is mind boggling!
All of these people have made a conscious decision to work in this field or to donate to an appropriate charity; but the people who I really admire in this are those friends of Brendan’s family, the school mates, the neighbours and the life long friends who have just been there unconditionally to do whatever was needed. I know Anna and Richard are extremely grateful for the help of these true friends.
Along the way Mark and I have learned that indirectly there is more we can do, and we urge the readers of this comment to join us, we can all become part of the wider community that it takes to help families in this situation, we can donate to those charities our time or our money - both are welcomed, or importantly we can donate blood.
That’s about all I wanted to comment on, see you at the front of the blood donation line. Much love, admiration and friendship.
Deb and Mark Meyer
Wow! What an amazing stage to be at with Brendan! Fantastic, wonderful news - and just in time for the birthday.
Deb - thank you for taking the time to write about Richard and Anna. You are so right - they are amazing and I think we're all in awe of how they have handled Brendan's illness.
Anna - thank you for keeping us up to date with all Brendan's treatments. We have logged on regularly and discussed Brendan's progress with the boys who loved seeing pictures of Brendan. It also gave me a huge appreciation about how much goes into a transplant and how amazing the Brendan is. I gave blood again the other day (finally passed the iron test!!!) and it was almost overwhelming to give again now knowing how much kids like Brendan need blood products.
Give you a call soon.
much love
Cheryn
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