Well after the weekend we have to steel ourselves again. Back into it. We are on Monday introduced to Oncology outpatients. It's releiving in a way, all the kids here have cancer, so I dont feel so alone, but it would be so nice to meet someone
with a medulloblastoma.
We are scheduled for three general anethetics.. Monday, Tuesday, Wednesday morning. These are for Radiotherapy planning. On Monday he has the front part of his mould made (front of his face) and a PICC line put in. This is a
long line that runs right up his arm into a large vessel, which means that Joshua doesn't have to have 'prickles.' This line will be in for the whole of his radiotherapy hopefully. He can cope with a lot, as long as it doesn't involve 'prickles.'
We are sent a 'big' blessing while we are sitting waiting in the form of Dion Small. Twice the Small's have stayed with us as guests. Dion has lukemia and was nutripenic when he stayed, I felt so sorry for him! felt so bad for his family that they were
dealing with this. Since Joshua's been sick, i've thought of them often, wanted to make contact to scream 'HELP!' knowing that 'cancer' has been in their home for a while. Dion was kind enough to come and chat to us for a while, showed me his portacath, which
we will have in February. He told me about his journey and honestly for me, he was like being given a long cold drink on a hot day. He also put me in contact with his lovely Mum, who I hope to catch up with soon.
I quiz the other 'Mums, a lot of
the people we are meeting are here for checks, treatment finished. Some kids look like they were never sick, others look ravaged. I know Joshua is changing before my eyes, a concerned lady comments in the lift 'Oh, your not every well are you'. He's already
lost two kilo's.
So Monday he had his first of three anaesthetics for the week. The big long PICC line has gone in.
Its Wednesday now, Joshua is currently having his third and final sleep for the week. It makes him nauseated, takes him a while
to want to eat, so today we are seeing the dietitician to get some shakes. for the next week we will be free other than physio, so looking forward to getting out and about!
We have just had the most wonderful two treatment free
days. The photo attched is us at the zoo, yesterday afternoon. Joshua's walking is improving everyday, I just wish that his confidence would go with it, unfortunately it's not the case.
Today courtesy of my lovely brother patrick and Fullers Ferry services,
we went to 'Rangitoto' the dormant volcanic nature reserve. We took the tractor ride around the Island and walked the 326 steps to the summit. It was an awesome day, Mike carried Joshua and I carried Georgia, i'll need some pamol tonight for my arm muscles!
Mikes feeling the pressure, we have our house deal going through this week and all the affected parties are spread out far and wide, which is proving hazardous. He also has the motel to contend with, we found out today that a recent sports team of 'children'
snapped brand new superking bed base. I suspect they were unsupervised and leaping off the mezzanine balcony.
Luckily for us our fabulous friends Pete and Tristen have been at home keeping an eye on things, paying the bills and overseeing people 'minding'
our business. I could never thank them enough, Tristen has been my best mate in Rotorua and when the chips went down, she was there. We owe them a lot!
Well, today at 4pm, we were one month into this journey. I'm toughening up, I don't
cry much, I laugh more, it doesn't 'destroy' me as much when Joshua is in pain, I'm trying to get on with it. We had a shaky week on the home front, Mike and I were at odds which is not the norm. He is trying to keep our life on track and of course still in
'survival' mode am I. He's worried about us getting frost bite in our Toes and fingers, whilst I have my hacksaw out ready to sacrifice a limb in order to save the family. Mikes a details man. I don't sweat the small stuff. I'm totally focussed on Joshua and
well, if the business is in good shape when we get back, great, but if not we'll deal with it then.
Mike is on the other hand, present where as I am not, and I know he's trying to shield me from the 'details' which I do appreciate. Home
right now is some strange and foreign dream. It feels like a year since I left. I guess it's that way when you are living every moment.
I'm still not sleeping. Our lovely friends Helen and Dion visited today. Dion, played with Joshua for over an hour.
It was beautiful to watch, I could see that Joshua knew he had a kindred spirit in Dion, even though Dions an adult. Joshua just opened up and was playing and laughing, in a way he normally only does with Daniel. Helen was a life ring for me, no one can understand
like another Mum whose stood where you stand,who knows what you know and feels what you feel. 'Take the sleeping pills,' she said. I think I will.
So today we have officially been given notice that our treatment is
being bought forward a week, which I am most happy about. On Saturday Joshua began his GGSF injections. This is to stimulate his bone marrow to throw out all its goodies. We are on these injections for four days, so last one tomorrow. The side effects are
that he's tired, grumpy and that his bones will be achy and sore. He's also febrile at night. So we have one more day of this and then he goes to theatre to have a big line put in his groin. They are then doing a lumbar puncture as well. Wednesday afternoon
they start him on a dialysis type machine to cycle off all these good cells. They will then be put aside to give back to him with his chemo. The collection will take two days.
Well, we have had an awesome start to our day. Joshua got
up and walked across the room and back, I was so proud of him. Last night he spent ages playing with Daniel, we had the Angry birds set up on a book on the bed and we were throwing the 'bad piggie' at the book and squashing the angry birds. The boys were doing
victory dances, I will upload the video onto Facebook.
For me, I have started a completely new train of thought. I have started thanking God for the Cancer. 'what?' I hear you all say, I know it sounds crazy. But it is something that we cannot change,
and with it we are gaining so many valuable lessons. I Woke up this morning and I felt at peace. Joshua woke up and giggled and smiled and got out of bed and went for a little walk a few minutes later. You, hear all the time; 'stop and smell the flowers',
but of course we don't. We charge around like mongooses in mateing season, don't we? Well the Gallagher family have been forced to stop. I'm now absorbing the moments of life. I'm seeing my kids, not just looking at them.
The other day we were on Rangitoto.
Rangitoto is covered in black scoria, where the lava flowed down the mountain, cooled on top, but continued to flow underneath. Because of this, the top layer of rock is all broken and jaggered. so here we were, going along on the tractor-train and I would
see this rock everywhere. We came around a corner and there was this pile of black rubble, with a tall single foxglove growing up out of it, with the most beautiful purple flowers. How are you surviving there? I wondered. But then it occurred to me, this is
Joshua. God is showing me Joshua. A beautiful, vibrant thing growing out of the rubble, surviving against the environment.
We have wonderful friends that visited at the weekend, Bharat and Meena. Bharat also owns a hotel in Rotorua, and when we
first arrived he came to visit and we just went 'click' And that was that. Bharat and Meena have their own faith, their own beliefs and Gods, but I learn so much from them. They too say be thankful for all things, be positive, don't speak negative things,
speak only the positive. Because what you say, is what it will be.
I'm sure a lot of my imperfections are going to be rubbed off over the next five years, as we live through what is 'our truth.' We have a child with cancer, but in that,we are trying
to grasp the good. So if what we are is what we say we are and if our truth is what we are thankful for..... 'GOD, I THANKYOU FOR MAKING ME A SIZE 10!'"
Well it was an early start and a long day, but we have finally made it onto the
ward in Oncology, we are sleeping in the treatment room because they have no beds.. Camping, we are!
Well, what can I say, I am so proud of Joshua. He started off the day at 0730 with a finger prick, we then sat in clinic until 1130, waiting to go to
Theatre, he kept telling me he was hungry, but he really was a star. We finally got to Theatre and he was terrified, the last time he was in a 'big' theatre was for the surgery. I had to go away and have a cry for a while, it was a long morning. I got Susanne
and Daniel to come up for lunch and some familiar faces and was really pleasantly surprised to arrive in recovery to a little boy wanting a paddle pop 1/2 hr later.
We got back to the ward, his Cd4 count was 60 (the minimum required was 20). So we were
all systems go for 'stem cell harvesting'. So we have spent 4 hours this afternoon hooked up tp an Apherisis machine. This siphoned off Joshua's blood, pulled all of his rich stem cells off and then pumped back into his body. (There is a photo in the slide
show). They need 4 cycles worth, one for each cycle of chemo. So we find out in the morning if they got enough, if not we go back on the machine again.
Daniela the 'blood nurse' said that he was the most well behaved child on the machine she'd ever
looked after. Not many children can lay still for four hours. All I can say is, he's my superstar. Again today, he was braver than Mummy. But I am still thankful, it went well. Tonight we are snuggled up in a tiny room on two trolleys, but he's happy.... Playing,
singing little songs and I'm smiling. Another day down.
Well we got close! 7.3 and we needed 8, so we are back on the machine this morning for a few hours. It means he will have a surplus of stem cells when we need it, rather than just
enough. It unfortunately has mucked with his calcium levels, so were on the IV drip over night to try and flush it out. It means we will likely be in for a second night stay.
Ive decided not to ask anymore parents on the oncology ward what they are
here for. I just met a 17 year old boys Mum, from New Plymouth, he was diagnosed a month ago and is riddled. He's here for comfort as opposed to cure like us. She said to me, it must be so hard with a little four year old that doesn't understand. I said to
her it's quite the contrary.... Joshua is starting to run with the tide, the benefit of being so young is that his needs are simple and that he doesn't have 'worries'. All he needs is Mum, Dad, Daniel and his iPad!
There are a
few things about today that are not as they should be.
1) I'm not with Mike and I would like to be, particularly today of all days... Because its our 10th wedding anniversary.
2) I have a child with cancer and I'm in a hospital.... Waiting.
3) waiting, waiting, waiting.
My dear Aunty Fay, who was a huge part of my early adult life, keeps telling me I should write a book. I don't think a book about about 'childhood cancer' would be a 'best seller' and top of the list for people's Christmas
stockings, sure as hell wouldn't be in mine. But if I did write a book, It would definitely have a dedication. The dedication would be to the 'iPad'. For without the iPad, Joshua and I would have found all the waiting, waiting, waiting, that much harder. I
think the wait/treatment ratio is about about 60:40.
We finally got out of hospital last night at 7.30 pm. We had 3 hours of treatment and 9 hours of waiting. Joshua ran a temperature yesterday afternoon after the 2nd cell harvest. We had to wait
four hours for the results of the collection (they count the cells) before they could take the 'vas Cath' out. This was the huge line into his femoral vein. So Joshua's entire blood supply spent about 6 hours out of his body over a two day period. Because
he had two big central lines in (picc line as well',) they get very concerned about temperatures. So we had a dose of IV antibiotics yesterday and had to go back for a second dose today and to see the Doctor so we had 10 minutes of therapy for a 50 minute
But now we are free till Monday, when the radiotherapy begins. Back into the cancer killing at last.
Mum and Georgia are coming today. I can't wait. Kim, Pete and the girls are coming on Sunday, I cant wait. They are bringing Alana's birthday
to us. We are hoping to go to the zoo again.
Well love, it's not the way were supposed to be celebrating 10 years. But at least we are!!!! And you are coming on Monday, will be good to have my mate back in the trenches, with me again. So for Monday,
I can't wait!!!!
2pm..... Im sure I'm living in the iconic Eagles song, Hotel California. If you try to leave....
We were out of the hospital, on our way down the hill, when we get called. It appears the Apherisis has affected our blood count
quite a bit. It's dropped down to 82' when it needs to be 100. So we've been called back. Joshua is having a blood transfusion. Its just what I felt like, a bit more waiting ;)