A strange New World...
Well we came out of Hospital on Sunday afternoon, since then all three kids have developed colds, including Joshua, but at least he has nutrophils now. So we are staying out of Hospital at this point.
But we have entered a strange new world...
The world 'of back to Work!' Mike started back on Sunday and I started back on Monday. Lots to do! but our business was in good hands with Pat and Kathy, and was in pretty good shape when I audited the rooms on the first day.
Yesterday I had my
first real day of dealing with guests, I was quite nervous! its been so long! but mostly the guys that have come in are people that we know, and its just so interesting, everyone has their own cancer story. Both of our guests yesterday had children in their
extended families with cancer.
But its nice to be back, working with my husband again, having some adult time, talking to Adults. Its nice to be away from the kids too! knowing that they are in Emmas capable hands.
On the health front, Joshua
is still sick every night, having trouble getting enough feed into him. But part of that is simply the fact that hes fed up with being tied to a tube.
Onwards and upwards....
Wow... Hello winter, it's official. We've had a better day here in Rotorua Hospital, the blood yesterday made a huge difference, Joshua had much more energy today! All I can say is 'thank God for Daniel Gallagher' he has been here for two days
straight, entertaining and playing with his brother. Daniel, your a legend and I love you.
Joshua ate some soup, some bread today and a little cereal. Oh boy! I so look forward to the day the tummy pain and the vommitting stops and his appetite goes
back to normal. How I look forward to seeing his beautiful face without that tube. I was telling him today that his hair is going to grow soon. Not sure if he believes me! I said, shall we grow it long like Mummies? Or do you want it short like Daniels? He
was a bit dumbfounded I think! He was brushing my hair at the time!
We had a platelet transfusion today, his had done hopefully the last bottom out. I was happy about that, he just seems to go on for ages when he vomits now, I worry about him bleeding
somewhere with all that pressure.
Its all as it should be... No nasty surprises, no signs of Georgia's tummy bug, I think we'd have it by now. So lets hope, that this is our last sleep in hospital for a long, long, long time. I'll be happy to come back
for broken bones, tonsils, a burst appendix, an ingrown toenail, a boob job.
I just don't ever want to be back for cancer. Ever.
We've been admitted again, mike and I braved it and went out for tea last night. It was really nice to spend a couple if hours with my husband. Once we were introduced, he said 'oh, yeah I remember you!' we've got three kids aye? Well it feels like
We got home I went to bed with Joshy, woke up at 2am, for the 2am guts ache, did his temp it was 38.6. So in we came...
Its been a rough day today, Joshua's line in his leg had to be resited, took three attempts, he's still vomiting
quite a bit, and his attitude has swung since our 'I want to be little conversation' last week. He's just over it all, so everything is hard now. Every injection, every vomit is taxing.
I read a quote today.... 'You don't know how strong you are until
you have to be'
That sums it up really... Oh well, we are nearly at the end of the battle, lets hope we won the war.
Jeepers, that was a bit exhausting Mum!
Me and my lunatic Mum
Joshua and Daniel... Team purple!
Home for Dads birthday
It was a real rush getting out on Saturday, Georgia caught a bug (so many kids in RMH, while we were there) We were playing with one little girl and then her Dad told me shed been running a high temp, so I very delicately tried to extract the kids from
her but its not easy, when they are playing and other parents dont of course understand that a bug can be very dangerous for other kids that are there.
But its really hard to avoid, and the poor little buggers need to live of course! Anyway we
got ourselves out of Starship in a hurry on Saturday, Georgia had temps of 39,and it was Mikes birthday. We also didnt need a blood transfusion which was great!
Im also learning to be careful with other families, I may have been over confident with
a new family, who have had a terrible time, Im so sorry and I wish them well and I fully get their need for privacy.
Its just hard when the world of pediatric cancer is so small, you get asked constantly if youve met so and so. Everyone is different,
some people are very private and its so hard to stay private in this situation. Bad news spreads like wildfire. For me, I'm the opposite, I take my comfort from the other families and would have given my left leg for contact with another family in the early
days. Im also happy to talk to anyone, tell any one anything. I come from the 'worry shared, worry halved' school. Thats why I blog... in the hope that in some small way people would get a little of what we are going through.
I'm so pleased for
my other cancer Mums though.. In Rotorua, Donna has been amzing support. Mandy, Amy, Anna and Sharon, you guys all keep me going. Craig and Claire and Kelly and Tamati, weve all become so close in such a short time. None of us has a guarantee. I just know,
that as time moves on, the rest of the world moves on and leaves you in its wake, even your closest friends move on, but the families who live with it, even after their kids are gone or grown, are the ones that are there for you after everyone else. Because
they lived it, it's their reality.
But anyway.... its good to be home!
When we left on Saturday, Tim the consultant said to me. "After eight stem cell transplants, Joshua should be a car crash and he's not" Joshua was sitting up playing away
at the time. He shook his head at him.
Since we've been home, weve had a few awful days with the tummy pain keeping us awake at night, but yesterday we went to Daniels Cross Country, where even the principal approached me, knowing about two other cancer
kids, one a relative and one newly diagnosed. One was my good friend Sharons lovely son Brad, who has the same cancer as Joshua. Turns out they are a relative of hers, its a small world!
We went all out for Daniels Cross country, We made a huge
'Go Daniel" banner, we dressed in purple, wore silly skirts and screamed our heads off for him. Emma said to me "I would have died, if Mum had done this to me" But Daniel was stoked. We stood on the edge of the field where he came in for his last lap and he
puffed his chest out, and did a sprint to show off.
Today we had bloods and Belinda our Rotorua consultant rang us. Joshuas hemoglobin is hanging in there just, but his white cells are showing signs that they are fighting something, So we are on infection
watch, will pack the bags ready. Belinda said to expect to be in, so we will.
We also are getting ready with our 'Arista gives back' project. I am having parcels made up of things to give families when they are in the Oncology room at Rotorua, nice
coffee, tea, lovely toiletries etc. Just things to make the stay more pleasant. We are also going to offer 'House cleans' through CCF, for when families are returning home with sick kids, we'll send our clean team in to clean their houses. Tendercare have
also joined us and said that they will take care of any laundry needs. Thanks Philippa! So this will be available to any family in the Rotorua area.
The lovely Rebecca Malcom, who is friends with my sister in law Clare, and works for the Daily Post,
contacted us recently about doing an article. We were totally blown away, when it came out in the paper on Saturday. Thankyou so much Rebecca, the sensitivity you showed was incredible. Thankyou for giving our family such a lovely gift and helping us promote,
that for us we need to give back to our community. Its framed and on our wall. It made us feel validated in some way.
Last day at the Mothership (fingers crossed)
Well we've arrived to our last day at Starship, without furore. I don't think Joshua gets it, After his 8th stem cell rescue, I tried to take his picture for posterity and he just scowled at me! Ah well... So from here we are back on the 24th or so
of next month for our first scan. Recheck of hearing, check of kidneys. Stephen said don't expect him to make a miraculous recovery, it can take months and months for them to get over it. But we'll see.
But he said our five years started at diagnosis,
so we are 7 months in.
What now? Well we still have the round to finish, all the blood transfusions, threats of infection etc. Then we have the first check up scan, the line out in about 6 weeks, then the work of getting him eating and getting his tubie
Then one day at a time!
21st May 2013
Our second day of chemo is done, Joshua has had to have some frusemide tonight to push fluid off his lungs, but he's only vommitted 3 times today. Weird, I sound like I'm talking about chopping onions, or doing the washing. Six months ago, the thought
of 'fluid on his lungs' would have had me catatonic. How life changes. Even the changes in his hearing and his short term memory that Im noticing are now 'shoulder shrugging' events. I'm a seasoned cancer mum.
Joshuas temperature has now gone up into
the high 38's again, I'm sure it's a response to the cyclophosphamide, he's done it on day two for three rounds now. My poor baby.
I read the title of a book yesterday... It was about cancer treatment it was called 'cut, burn, poison' and I hate to
say it but its the truth. My child's been cut, burned to the point of Long term brain deficiency and now his hearing has been walloped and his heart and kidneys possibly damaged and all for no guarantee.
As my lovely 'other mum' Mandy, said to me yesterday.
Is it worth it. watching your child slowly decline? I wonder sometimes as I walk up and down the corridor, I can hear children screaming to go home, kids having procedures and the horror gets to me. But then I look at my boy, and everyday that he's alive,
is a day where I don't have to miss him. Yes we are rolling a dice, with uncertain odds, but at least we have the chance of a win still. It's just like when you spend your lotto winnings in your head. Until they call the numbers, you've still got your hope
despite the odds.
Joshua's 476 beads...end of round three.
Wow, here we are. The last round of chemo. We arrived up on Thursday afternoon, in a bit of a rush 'blimin Auckland traffic!' I just got to audiology on time. The news wasn't that great, Joshua is down to two hertz, still with a round to go. As the
Audiologist put it, if we put him in a classroom of kids, he's going to struggle. I expected because of this Stephen might alter his last dose of Cysplatin, but apparently not. But boy, we can manage deafness, deaf and alive is fine by me!
We did have
good news though. He's grown a centimetre, he's put on half a kilo, his balance is improved, in comparison with others, to me he's looking good. So fingers crossed, lets hope for a trouble free finish to our troubles.
Tucked up in ward 27, ready to go for the last round.