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Monday, January 24, 2011

Home after 8 nights in hospital

We got home last night at 8.30pm after 8 nights in hospital. It had been one hell of a long day, having started at 6am with a nurse who felt compelled to go on and on about her back problem and how she shouldn't have to take blood from Oscar's line while he is sleeping because it hurts her back so much. She then insisted on changing his lines because they didn't have a hospital policy tap on them. I have never seen one of these taps in eight months so find it surprising that its a hospital policy (so do the other nursed on the ward). Still, I smiled and humored her. Oscar on the other hand did his best impersonation of a psychopath at her when she flipped him over on his back rather harshly and woke him too abruptly. He punched out and screamed and gave her a good piece of his mind and I silently cheered him on. I remind myself the key to this journey. Surrender.

I remind myself of this many, many times as our day went as follows:
  • Oscar gets woken unnecessarily at 6am to have his lines changed despite the fact that they had kept him up til 11pm changing his lines just the night before. On this same night we had been abruptly removed from our room of the previous 7 nights because Oscar was deemed well enough to be in a share room in another ward. I tell myself again and again. Surrender.
  • Oscar spent the morning screaming over and over from 6am "bottle" "food" "drink" as he was fasting in preparation for a lumber puncture. I responded to his desperate screams with highly ineffective distraction techniques and strategies. Surrender.
  • 10am and blood results show neutrophils not high enough for procedure to go ahead so I ask if I can start feeding him. They say yes. Oscar cheers and gets super excited. 10 minutes later, as Oscar is just about to start his first mouthful of yoghurt the nurse returns to tell us there is a change of plans and "the team" (meaning a bunch of invisible Dr's we haven't seen all week) wish to go ahead despite the low neutrophils. I'm not sure what this means and want someone to explain.
  • 11am Dr comes to explain its ok to go ahead as his neutrophils are on their way up and all other bloods good.
  • 11.15am a miracle occurs and the porter arrives to take us to surgery. We will also be having a 1 hour drip of chemo followed by 6 hour drip of fluid and they are supposed to start that before surgery (preferably as close to 6am as possible) but they forgot to order the chemo. Surrender.
  • Off to surgery and focus on the miracle of this early timing. Get to waiting room and the anesthetist wants to know why I don't have an accredited chemo nurse with me. No idea? Nurse who is with me runs away in direction of our ward. The Dr has a very long list of procedures to get through and can't wait any longer. We get wheeled into surgery and Dr finds out we don't have an accredited chemo nurse or an A1 (an essential piece of paper that tells Dr which chemo is going where and when). The Dr can't go ahead as is injecting said chemo into Oscar's spine during lumber puncture. Dr rings many different departments to chase A1 and nurse. Dr hangs up phone and says to me, " what is wrong with this place that I am chasing these things in the surgery room. I'm a Dr". I reply, "No idea but if you figure it out could you complain to the appropriate people" She replies, "I'd have to find them first". I smile. Surrender.
  • Meanwhile Oscar is freaking out. He knows the procedure. He has had more than a total of 16 surgeries in the last 8 months and he knows what happens and in what order and he is usually calm and happy but he knows there is something out of order and he doesn't appreciate it. He lets us all know. This is disappointing for me because if he goes down distressed, he wakes distressed. If he goes down calm, he wakes calm. We both prefer calm.
  • Eventually the Dr goes ahead without said A1 or accredited nurse but borrows someone from the next door theatre. I hold him as they give him the anesthetic, give him a kiss and say, "See you soon".
  • I am starving so I go to the cafe to get a meal. On my way there I pass a frazzled nurse who is running with Oscar's A1 in hand. I direct her to surgery room 7 and smile some more.
  • I always fast with Oscar because I can't possibly eat in front of him. All the mums do. I order my meal dizzy with hunger and anticipation. Wait. Wait some more. They realise they gave my order to someone else and are redoing it. My buzzer goes off and I have to be in recovery as Oscar is back. I leave, still hungry and rush off to Oscar. I find him distressed and still half out of it, a dead weight to hold and no muscle control of his neck but wants to be in my arms and screaming and rolling around like a jellyfish. I surrender.
  • We go back to the ward and the nurse is on lunch and I just want the drip to go up so we can get out of here at a decent hour. That doesn't happen. We leave at 7.40pm. Surrender.
  • Before this delayed departure a nurse visits to say she has been looking for Oscar's A1 for hours and couldn't arrange a nurse for Oscar's home care in the coming weeks until she found it. I tell her, "Last I saw it was in a nurses hands being run to surgery room 7" She hurries off muttering to herself. I laugh out loud.

The highlight of our day is a visit from Dad and Debbie, who get me fed, spoil Oscar and cheer him up so much he hasn't stopped talking about it.

The other highlight is getting home.


A special thanks to Dad, Debbie, Mum and Robyn for all visiting during our stay. Oscar talks non-stop about your visits when we are in there and it really lights up his day. Thanks to Mum also for keeping Auden smiling. Also, thanks to Lisa for visiting me at home and Matilda for your play date with Auden, who keeps asking when he can see you again. Finally, thanks to all of you for any help you have provided in any form - meals, kind thoughts, encouraging chats, texts etc. It keeps us going and we are lucky to have you.

Two more weeks to go of this intensive treatment!!!! More about that later. Got to run...

Monday, January 17, 2011

Minimum 7 days in hospital

We have just been told that we will be in hospital a minimum of another 7 days to treat the central line infection with antibiotics. They need to get it right as the line goes to his heart. So this is what we have to do.

His bloods are all good to go ahead with treatment except his neutrophils, which have been depleted from fighting the infection. They have booked him to go ahead Monday provided the neutrophils have recovered. We will still be in hospital so it means treatment will be in the ward rather than clinic, which is very disappointing as the clinic always do the lumber puncture by age. In the ward you might wait, and have to starve Oscar, until 5pm.

It is what it is and we will manage. The main thing is that Oscar is in good hands. Please keep us in your thoughts. Take care. x

In hospital

We were admitted to hospital on Sunday night - Oscar had a fever of 38.6. He has been in a lot of pain with stomach cramps, diarrhoea, vomiting and fevers. Today they have told us that he has a culture growing in his central line. Basically, there is infection in the line. This isn't great because once it happens once it tends to recur. The delay in final treatment isn't ideal either. Still, his bloods are good so overall the treatment is working. I am angry at myself though, after being so extremely careful with the line, and I let myself be talked into allowing him to play with water on these hot days. Anyway, can't do anything about it now but help him get better.

I also ran into one of the little girls who was about three weeks ahead of us. I was excited to see her to congratulate her on completing her treatment when her mother told me she has relapsed. This is very distressing. The only alternative they have is to try an experimental treatment of a new drug from America and hope she can get through the next couple of months, if so, she will have a bone marrow transplant. I feel overwhelmed for her and her family - to be so close to finishing and to be thrown into another even more dangerous journey. For privacy reasons I won't tell you there names but I am thinking of them all the time.

We are on Variety Ward. They have one nurse for every four patients. Camperdown has one for every two. So we are being patient and going with the flow. There are many people on the ward much sicker than us. We are grateful that Oscar is doing so well.

I hope to be out of hospital before the weekend and will update you then. Keep us in your thoughts and take care.

Sunday, January 9, 2011

Oscar needs your help please

Oscar's lumber puncture and treatment did not go ahead today as his blood results showed he has very little white cells, no neutrophils, low platelets etc. I was fully expecting this to happen as he has seemed very miserable the last week and they did make it clear to us that this would be a challenging time for him. He has also developed some eczema which results but we are focused on keeping him strong and healthy through the next week.

Next Monday we are rescheduled for the lumber puncture and intensive chemo. This will begin the final and most hard core two weeks of his entire treatment. They say he will lose his hair again and have some mouth ulcers and other side effects but we think he is so strong he will prove them all wrong.

He will need your help though. So please if you are reading this could you remember to send Oscar some love, light and healing thoughts every day over the next three weeks as he undergoes this final onslaught of heavy treatment. Ask the angels, archangels, fairies, universal wisdom, God, Goddess, Mother Nature - whoever you like, whatever you feel comfortable with. Please be specific and ask the following:

"Please give Oscar healing love and light and protect him from any possible side effects from his treatment, especially mouth ulcers. Please allow him to stay home with his loving family."

Or something similar.

Or just think loving thoughts frequently that are directed at Oscar if you prefer.

Scientific studies show that the energy of thoughts/prayers/love/light can heal and it is more powerful the more people who do it.

Oscar is open to receiver your love and says thank you and blesses each and every one of you for your help.

Saturday, January 8, 2011

That light at the end of the tunnel

Sorry I haven't updated you in so long. Oscar has been having his weekly chemo treatments throughout Christmas and the New Year and is doing extremely well. He was also on a strong steroid which changed his personality somewhat and has kept us busy and challenged with his teenage emotional outburst that at times have been violent and difficult to manage. In the last week he has withdrawn from the steroid which was increadibly challenging but the main thing is he has been healthy and whole throughout the treatment.

We are incredibly grateful not to have been in hospital over the holiday season when all the facilities such as the cafes are closed down and I can't imagine how hard it would be to survive in there without these basic facilities. To all those families who were in there for christmas I have no doubt the staff did something special for you and hope that it is the only Christmas you ever spend there. Thanks to all the staff and various charities who generously gave us a hamper and some Christmas presents for the boys. It made going to clinic during this time special and distracted us from the long waits.

Tomorrow Oscar has a lumber puncture followed by a 6 hour drip of chemo, provided his blood results are good to go. This is a hard day and Oscar has got to a stage where he is starting to try to pull the drips out of himself and challenging everything, including medication. I completely understand - he's been such a trooper. This is the last 6 hour drip so we will be pleased to get it finished and move on.

Please send us your loving thoughts filled with light and healing for tomorrow. Its a long day but we are getting closer and closer to the end of the intensive phase of treatment. Only two more weeks to go. Oscar is healthy and strong and we can see and feel the light that we have been desperately seeking at the end of that tunnel. I will ensure to update you tomorrow.

Thanks again to everyone for your support and we hope 2011 is a wonderful year for you and all your families.