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Wednesday, December 22, 2010

Doing well

Oscar is doing very well on the steroids. No high blood pressure and still sleeping relatively well. Today the Dr said he deserved it after how hard he was hit with the previous steroid and then the methotrexate. She thinks he is pure delight and I can't disagree there.

Also, his recent bone marrow was clear. Hooray for Oscar. His little body is doing everything it should and his huge spirit is unphased and full of light and love. He seems to spread it everywhere but no more than in clinic. They all just adore him which makes the experience more enjoyable for everyone.

Thanks again for following Oscar's journey and for keeping us in your thoughts. We are feeling positive that we will be home for Xmas but I'll let you know how it goes.

Sunday, December 19, 2010

Articulation Attempt

If only I could
Spare you
This pain
Lift you up and out
Of this
Scary place
We now call home

If I could just
Take it all away
Give you
Freedom
Toddlerhood without unspeakable
Trauma

1,456 syringes of medicine
In 182 days
I have tricked and terrorised you into
Swallowing
And more to come
Always more

I can’t stop it
Hide it
Deny it
Nor run away with you

I can’t give in
To your screams
Of protest
At times
So desperate and grim

All I can do
Is love you
Like it's a mental disease
Love you
With hugs, kisses and late night vigils’
With words sung
Like lullabies on the wind
Of your soul
Whispering

And I can
Hold this space
Look you in the eye
Share the burden
Of your truth

I can stand up
Sit down and crawl
For you
And silence those
Who deny
And be your voice against those
Who squash
Your needs
For their “shoulds
And remind the numbers
That you are human

Humanity itself being heard

No one knows
Not even I
Who have journeyed with you
And held your eye

Only you
Know
The light that illuminates
Your star

You shine
And grow
And continue
To smile

If only I could
Make the hurt disappear

But I can
Love you

I can
Daddy can
Brother can
You can
We can
LOVE

Monday, December 13, 2010

Clinic Update

Last Wednesday Oscar had an echo cardiogram and his heart was given the all clear to go ahead with treatment. They needed to check his heart before he started one of the chemo's, Doxorubicin, which can cause heart damage. After two doses of this they will check his heart again so he is having another echo on 22nd December.

So today he started the following chemo:
  • Doxorubicin - it destroys cancer cells by interfering with the cancer cells growth cycle. It is administered through his central line and takes about an hour. Possible side effects are nausea/vomiting, hair loss, low blood counts, mouth sores, heart damage, nail damage and the skin may be more sensitive to sunlight.
  • Asparaginase - destroys cancer cells by interfering with their growth. Oscar has had this before and it is administered by a needle into the muscle in his bottom. The needle hurts obviously but the drug itself also stings as it is absorbed into his system. Possible side effects include loss of appetite, abnormal liver and pancreatic function tests, high blood sugar, drowsiness, headache.
  • Vincristine - also destroys cancer cells and Oscar has had it before. It makes him severely constipated no matter how many drugs you give him to help him poo. It is administered through his central line and takes about an hour. Other possible side effects include stomach pain, hair loss, irritation of nerves: numbness and tingling of fingers and toes, muscle weakness, jaw pain and rarely seizures.

He is one week into take the steroid, which is called Dexamethasone, and has not developed high blood pressure. Hooray! It is a hormone similar to hormones made in the body that may kill some cancer cells and increase the effectiveness of other anti-cancer medicines. It is given orally three times a day and is causing us a lot of grief as it stinks and tastes terrible and Oscar will not take it. After much effort getting it in he spits it back at me. I've tried every trick known to man and wasted almost a full bottle just in attempts to get him to tolerate it. We eventually get there but he is strong and I have to force it on him which makes me realise how lucky I am that he has been so good with all the other medications. On top of that it has turned him off taking any of the other medications he has been taking well. So medication time isn't much fun for anyone but aside from that he is doing well.

Friday we go back to clinic just to have one of the above chemo's - asparaginase - then Monday we have the full three listed above, then Thursday just the asparaginase and so on for a few weeks. Clinic is closed on the public holidays and reopens for the new business day with a backlog of treatments so we will adjust his treatment according to when they can do it.

That's all for now. Take care and I'll update again when I can.

Monday, December 6, 2010

Day 1 Steroid

We have been struggling with very little sleep (I have had about 5 hours over the last three nights collectively) and just getting by. This is no different really to the last 5 months, except that it has an accumulative effect over that 5 months. So I am just getting by, putting one foot in front of the other and trying to sleep any moment I can.

The sleep deprivation is likely to get even more challenging as Oscar started the steroid today. The Dr's generally try to talk things up and keep positive so when they tell you its going to be a hard couple of months they usually really mean it. Day 1 on the steroid and Oscar is already violent, angry and full of mood swings. I physically could not hold him down to get a nappy and clothes on him this evening, he was that strong and angry. He swings from wanting something to throwing at you in a split second, then wants it again.

Of course, this is the journey and all I can do is go with it and somehow keep calm and focus on what I can change or help and let go of the stuff that is just out of control. Auden is also waking with nightmares and very unsettled so it is all starting to take its toll on all of us now.

So if we haven't rung you or have dropped out of touch its just because we are just barely hanging on right now. No doubt it will pass so hang in there with us. I will update you on Oscar's status later this week. Send us your positive calming vibes please and take care. x

Wednesday, December 1, 2010

A New Anesthetic Makes Oscar Smile

Oscar's bone marrow aspiration went well today. He was first at 10am (a record for clinic) and they tried out a new anesthetic that didn't knock him out as much. It was brilliant. He woke up laughing and smiling. Can't wish for better than that!

Auden came along today and thinks hospital is the greatest place on earth. He played with the fantastic train set in the play room in Clinic and then I took him to have a milk shake and run around outside at the amazing kids playground. Then back up to clinic to watch a movie while waiting for Oscar to wake. Oscar seemed to love having him there as well.

All in all it was a great day. We start the steroid on Monday. More about that later - I am trying not to think about it until I have to. Thanks again to everyone for messaging and keeping up with us on this journey.

Tuesday, November 30, 2010

Are we there yet?

Sorry for the lack of updates lately but we have had a crazy busy time with hospital stays, Oscar's 2nd birthday, more hospital stays and Auden's 3rd birthday. We are just starting to get back to a slightly more normal life and I finally have a minute to explain where we are up to on this journey.

Oscar has completed the fourth and final methotrexate 24 hour drip (hooray!) and once again got mucusitis and had to go back in to hospital to be put on a drip and given pain medication. He has recovered very quickly though and yesterday in clinic his blood results were so good that they are going to move his bone marrow aspiration forward to tomorrow (he was booked for Monday). This is good news in that he has recovered so well and we can keep moving forward but it does mean we miss out on our two week break we had been looking forward to. Still, the quicker we start the quicker we finish.

So Oscar is fasting from midnight tonight and we are back in clinic tomorrow for the bone marrow aspiration. Monday we go back to clinic again and start the next phase of treatment which we have been advised is the toughest phase for most children. Its a complicated mix of steroids and many different chemo treatments - similar to the beginning phase. We will be monitoring Oscar's blood pressure in clinic as he may get high blood pressure again from the steroid (it is a different steroid this time but apparently stronger). Basically, he will be bombarded by very strong drugs in a specific protocol and due to the fact that his body has been through so much already it can be a very tough couple of months. There are no scheduled hospital stays but most children have at least one or two trips to emergency and stays during this time.

That's what they tell us but we feel positive Oscar will manage to get through it without too much trouble as he has proven time and time again to bounce back quickly. There are some chemo treatments that give mouth ulcers but not as severely as the methotrexate. There will be a lot of time spent in clinic waiting and having treatment but we get to sleep at home every night (not that sleep is likely but still). Oscar will be waking all through the night to eat due to the steroid making him so hungry but we have been through it before and know what to do.

This is the last two months of intensive treatment and all I could say to our Oncologist yesterday was: "Are we there yet?" She laughed and said anything can happen but your getting there.

Wish us luck tomorrow and thanks for all your kind messages and support. It means the world to us. x

Tuesday, November 16, 2010

Hospital - take two

OK, Oscar's platelets have dramatically increased from 30 to 170, which they find unusual and think it is possible the blood result on Sunday night was incorrect and that we may have been able to go ahead on Sunday after all. I am going to choose to disregard that information because it doesn't help in any way - it just makes me want to bang my head on the wall. No point in that so we are heading in tonight with a positive feeling that this is our last one of these treatments and looking forward to having a good experience and getting home ASAP and then staying there.

I'll give you an update when we get back. We head in at 7.30pm, which is a total nightmare for Oscar and I timewise but it is definately the last time we will be doing this particular dance. Must go, repack, cook, load the car up and head out. Wish us luck.

Sunday, November 14, 2010

The Roller Coaster Goes up for Oscar's Birthday - and then comes crashing back down again

Friday Oscar's blood results were good and we were booked in for admission on Sunday night, provided there was a bed. We were warned that the bed situation was worse and to expect a few days delay.

Saturday Oscar turns 2 and we have a wonderful day with visits from Nana and Roby (puppy), balloons, cake and a visit to the Koala Park where the boys got to feed kangaroos and pat a koala. (I will put photo's up when I get a chance)

Sunday we head out to visit my Dad - we haven't been to his house since he moved in around January and Pete has never been there so I was keen to catch up with them. Of course, we get there and get a call from the hospital at 10am asking if Oscar has a runny nose as they are sorting a bed out for him. So we race home, pack our bags, get told we have a bed and go in at 4.30pm for the final round of this treatment. Hooray!

On the way to the hospital Oscar is hysterical. He knows where we are going and this time he really is putting up a strong protest. He is screaming, saying, "Mummy, cuddle, scared, no, other way, home, Daddy, brother." and this mantra is repeated over and over until he is so hysterical he is turning purple in the face and dry retching. I'm stuck and can't pull over to help him and have to just keep trying to talk him down. Finally, I am able to pull over but I can't get him to stop dry retching. At the hospital I physically cannot get him in the pram. He is so strong and arching his back and screaming at me to go home. I have to just sit with him and cuddle him for what seems a long time and then have to carry him in, pushing our pram and luggage. We arrive and the nurse messes around with Oscar for an hour and a half, overstimulating him until he is psychotically charging up and down his cot. It takes me three hours to settle him.

Ah, I get my coach bed made up and fall asleep. An hour later, at about 10.30pm, a nurse wakes me to tell me that Oscar's blood results show his platelets have dropped dramatically and they can't go ahead with the treatment. She says I should go home and come back into clinic on Wednesday to start the whole process again. His platelets either will naturally recover or he will need a platelet transfusion. Oscar has only been asleep an hour and after how upset he was I can't bring myself to wake him so I ask if it is ok if we stay overnight and leave when he wakes. I also don't want to go out to the carpark on my own in the middle of the night as its not the nicest of places. So it is that we have a sleep over in hospital except I can't go back to sleep. So I repack all our belongings, get a cup of tea, read a number of magazines, do my meditation tape three times, finally drift off for an hour and Oscar wakes at 7am and we go home.

Poor little Oscar. He just keeps getting kicked in the teeth again and again.

On the bright side we were very lucky to get to be home to celebrate Oscar's birthday and it was a great day. Also, Auden was overjoyed we were back so soon (although we will have to do the whole separation dance again later in the week) and Oscar gets some more time for the ulcers in his mouth to heal before they hit him again with the chemo. Mum raced down from Armidale for no reason and I missed out on yet another nights sleep but at least we found out before they accidentally went ahead with the treatment.

So we keep riding the rollercoaster and find a way to stay positive amidst the sleep deprivation and chaotic disappointments. Hopefully we will be in hospital later in the week and Oscar will be treated and recover before Auden's birthday on the 27th. Finger and toes crossed. x

Sunday, November 7, 2010

Hospital, home and healing the hurt

We were discharged from hospital on Thursday afternoon. Oscar cleared the chemo from his system very quickly and his recent kidney function test shows that he is within the normal range. So this is very good news and better than our Oncologist expected.

The time in hospital was very intense and without any sleep for me. I found a way to get Oscar to sleep a lot in there by closing him up in his pram and playing his ocean sounds music. He needs almost triple the amount of normal sleep when he has this treatment I have discovered and that seems to make a difference in his comfort levels. We shared a room with a newly diagnosed little boy the same age who did not speak or even move much. He has a different kind of cancer and his treatment and prognosis are considerably less positive than Oscar's and the family were really struggling to come to terms with the diagnosis. My heart goes out to them and I tried to give them any help I could but it was very distressing having the Dad sit on my bed at some crazy hour of the night asking me questions like, "Why has god done this to me and my little boy. He hasn't done anything to be punished for", and so on. I tried to gently explain that all the energy he has at the moment needs to go into helping his son and asking questions like that won't help and will just drain precious energy. I managed to calm him down but that night was very rough with many Dr's and nurses trying to help his little boy who has had temperatures for days without a cause, despite every test known to man. Oscar, as always, picked up on the energy in the room and kept saying "Boy crying, crying" and looking concerned. It is becoming clearer each time we go to hospital that part of Oscar's journey is to witness the journey of other little people facing similar and tougher challenges than he is facing. It certainly helps you keep perspective on how lucky you are and how there is always someone worse off than you.

We also discovered that the Camperdown Ward is like a crazy war zone these days as it is always completely full with between 10 and 15 people being refused beds every week. This just increases the intensity of the experience for everyone, especially the nurses. I had one nurse walk in and say, "Don't expect us to be nice to you, smile, talk or doing anything other than administer medication today. We are flat out, worked 12 hours straight without food or a break and still can't get to the buzzers on time. People are vomiting because we can't get the medication in on time every time and there are some extremely critical children needing extra attention." These nurses work long hours in difficult conditions with traumatised children and parents every day. The things they have to deal with are incomprehensibly challenging and I wish I could find a way to thank them and give them back some of the care they give to us and all the other families. I try to remember that as hard as it is for us to be there it is even harder for them to manage all the different levels of care, varying personalities of both parent and child and still keep on schedule and smiling. They deserve more help, more money, more volunteers and more gratitude than they get and I will find a way to thank them before we are through with this treatment.

Since we got home we have been anxiously waiting to see if Oscar would get mucositis and yesterday he woke with severe mouth ulcers throughout his mouth. He has been in a lot of pain and I have no doubt that if a Dr had seen him yesterday they would have admitted him to hospital straight away. I held off taking him while I was able to keep the pain medication and fluids in him. This is a huge responsibility and a tough call because he can't speak to tell me how bad the pain is and I have to be guided by my intuition. If I keep him home he heals quicker for obvious reasons and the minute he is in hospital all eating and drinking will stop and he will be anxious. On the other hand, in hospital they can give him all his medication through the central line and that is less painful than trying to swallow it at home. I made a decision to stick it out and was able to get the pain medication down his throat and continue enough fluids to get hims through the night and he seems slightly improved today. He has managed to play in the sandpit and forge ahead with some normality as long as I keep the pain medication and the mouth wash in. It is a huge relief that I made the right decision and I was able to manage it exactly as they do in hospital - setting my alarm two hourly to check his temperature and maintain medication and offer fluids throughout the night. Oscar slept much better than he would have in hospital and that also helps.

He's very brave as the pain is pretty excruciating at times and he has been nauseous and vomiting for days as well. All this is improved a little today. So hooray for Oscar and I feel certain we won't have to be in hospital now until the next treatment on Sunday/Monday.

The good news is we have only 1 more of these treatments to go. Yay!! It is a 24 hour, 7 day job keeping up extra medication and focusing on getting him through each one of these nasty treatments so it will be a relief to get that last one over and done with.

We feel like we have dropped out of normal life completely during this phase of treatment as it has taken up our entire concentration. We hope to be able to see everyone soon. Oscar turns 2 on Saturday, goes into hospital Sunday for the last treatment and we are hoping he will be fully recoverd by Auden's birthday on the 27th so we can have some form of celebration. I'll keep you posted.

Thanks to everyone who sent me messages, visited us in hospital and kept us in their thoughts during this really challenging time. We are grateful, grateful, grateful.

Sunday, October 31, 2010

Heading off to hospital

They have found us a bed for tonight (Monday 1st November) on Camperdown Ward, which is as good as it gets (although later than scheduled). I won't be taking my laptop as its a pipe dream thinking I have time to so much as turn it on and its just more things to carry so I will update when I get home.

Our plan for Oscar has been to double his dosage of anti-viral medication leading up to this next treatment in the hope it might stop the herpes from coming back in his mouth and maybe reduce the extent of his mucousitis. The Dr's don't think it will work but it is worth a try. I really hope it does because getting 21 syringes of medication into him daily hasn't been easy and he deserves some reward (not that we always get what we deserve). So we are hopeful and know we have done all we can.

Please send us some positivity to keep the momentum going, to stay sane in the insanity that is hospital and amidst so much sleep deprivation. We want to bring Oscar home and keep him out of pain and out of hospital until the next treatment. Fingers and toes crossed.

Monday, October 25, 2010

Back from Hospital

Sorry for the lack of postings recently but we have been in hospital and life has been intensely challenging. I don't think I can possibly come close to describing the couple of weeks we have had. I wish I could but its beyond me. I will try to do a rushed summary.

As we were unable to get a bed on the chemo ward (Camperdown Ward) we did have a more difficult time with Oscar's treatment. They don't have as many nurses registered to administer chemo and they got the dosage of his anti-nausea medication wrong. He was violently ill vomiting and this made him even more scared and anxious. One time he vomited on me, all through my hair and clothes, and there was nowhere safe to put him down and he was still heaving and hysterical so I had no choice but to wait for a nurse to come and help me. I stood holding him covered in vomit for 30 minutes and kept thinking about the warnings we were given to clear away vomit immediately as the chemicals in it from the chemo can change the DNA in a healthy person too. What could I do but wait?

They also forgot to book him in for a lumbar puncture which meant I had to get emergency to arrange it and we were told he may not go in until 5pm. He was hysterical with hunger and anxiety at 9am so I didn't think I could manage this day on my own. So far every single one of his anesthetics I have been on my own with him and managed but on this day he needed more than just me. I rang Pete to ask for help but he couldn't do anything and I asked for him find someone but no one came and in the end I was lucky that they took pity on Oscar and let us go ahead in the queue. Thank heavens for the kindness of strangers. It was the worst one so far as Oscar was so hysterical and would not stop screaming and hitting me. The nurses, Dr and anesthetist all helped me so kindly and it was reassuring that I knew each of them from previous procedures and that they were confident in knowing Oscar. This helped a lot.

It was an horrendous day and I was so glad it was Friday and that hopefully someone would be able to come and help me over the weekend. When you are there on your own you are not allowed to leave your child unattended, understandably. This means if you want to get something to eat, go to the toilet, have a shower, go to pharmacy to pick up a script or anything else - you just can't. There are volunteers that will sit with your child but you have to book them ahead and when I have tried this Oscar gets too upset as he doesn't know them and he finds hospital still scary. In fact, I would say he is more scared of it now than he was at the start because he knows what's coming and he barely sleeps there unless being cuddled or sometimes in the pram. It's just a matter of surviving until they let you come home - once home, he transforms very quickly into the happy boy we know.

This time however, less than 48 hours after being discharged we were back in emergency with a very very sick boy. He had mucousitis throughout his mouth and down his digestive tract. This means he had ulcers of the mucous lining all the way down to his anus. The Dr's say the pain is significantly worse than tonsillitis and put him on a morphine pump to keep him comfortable. There was nothing they could do to fix the ulcers, you just have to wait for them to go. This is all a side effect of the chemo but it was quite severe this time. He was also vomiting every couple of hours which hurt like hell with the ulcers. I questioned the Dr's about the vomiting and a number of them said it was caused by the mucuousitis but this didn't make any logical sense to me. How do ulcers cause vomiting? So I kept at them and asked to speak to the head Oncologist because I thought it was the morphine making him sick and no one would listen. Thankfully the Oncologist agreed with me and they took him off the morphine at her request and he never vomited again. I wish they had listened to me at least 24 hours earlier as it would have saved Oscar a lot of pain but was so grateful when he finally stopped vomiting. He had slept on me day and night for three nights and was just as miserable a little being as one could ever imagine.

Fortunately, he is tenacious and keeps fighting back. Once we had the pain under control he started to take small sips of water and after three days of not eating he was able to have a small portion of yoghurt. Each day he improved in very small ways until we finally came home yesterday. Hooray! I have never felt so blessed to be in my home again.

Auden has been finding the absence of his brother hard and when we arrived home he rushed up to Oscar, put his arms around him very gently in a hug and said, "It's good to see you baby". Ah, my heart overflows - there could not have been a more divine homecoming moment.

We were in yet another ward for this last week, Clancy Ward, and we shared a room with a 7 month old baby who had been abandoned by her parents and an 11 year old who didn't get many visitors either. The baby lay in its cot without making any noise virtually all day, knowing that no one would come. She just stared into space and lay around looking at her own fingers. I started talking to her and she would smile the minute I walked into the room. Each morning I opened her curtains and put some music on for her and talked and sang to her. She loved every minute of it. So it was extremely hard leaving her knowing she is just going to lay in her cot waiting for the nurses to tend to her in between the million other things they have to do. It's amazing how well she has adjusted to life in hospital and incredibly inspiring to see the Ward Granny volunteers who visit her and cuddle her and give her some love. It makes you realise how generous so many people are.

So the next time you are feeling disappointed in your mothering, annoyed that your children won't eat dinner, worried your not feeding them enough or feeding them too much or disciplining them in the right way, or the next time someone criticises the choices you make as a parent - stop and think about the children who really are deprived and remember just how lucky your children are. These days there is so much pressure to get everything just right and so little comprehension of what real needs are and what true deprivation really looks like.

We will be back in Clinic Thursday to book in for the next treatment. The Dr's say it is likely the same thing will happen again so we may be spending most of our time in hospital in the next month but we are going to do everything we can to avoid that reality. If all our efforts don't work then we will surrender to more hospital time and focus on keeping Oscar as comfortable as possible.

Thanks for all the kind text messages and support. Life is very full on and we are blessed to have you all out there thinking of us.

Wednesday, October 13, 2010

Finally heading to hospital under less than ideal circumstances

We have been waiting for a bed for Oscar since Monday but the hospital is so overcrowded they have been turning many away. The scary thing is that the Dr's can't guarantee that this delay won't have a negative impact on Oscar's overall outcome. This is his life we are talking about people! The staff seem genuinely distressed and have managed now to find us a bed in Variety ward. This is where I had the bad experiences with the nurses from hell who don't know how to do chemo because they aren't oncology nurses. And we are going in to hospital specifically for chemo treatment.

I feel very nervous and would appreciate any prayers or assistance or even a visit. I am going to be there over the weekend which is even worse because there are no permanent staff or nursing unit managers to ensure your care is sufficient.

I know that the lack of beds and the state of the hospital system is in the news at the moment. From a personal perspective this journey is as hard as it gets without any additional stresses being added by the reality that your child is not getting the optimum care. There is absolutely nothing I can do about this except make good file notes, keep advocating on Oscar's behalf, staying calm and surrendering to the greater good of Oscar.

Some how, some way I am determined to turn this around for Oscar and make sure he has a good stay in there. Please send me some positive thoughts.

Friday, October 8, 2010

Some photo's


Playing with Pa


Hanging out with Daddy and chocolate



Oscar driving the car



Auden





Hanging out with Daddy and donkey




Auden giving Oscar comfort




Water fun




Hanging out with brother in our pjs






Tuesday, October 5, 2010

Oscar seems improved today and more his usual self. The nausea has reduced significantly but the mouth ulcers are still huge and there are a lot more little one's as well. He cannot eat anything but ice, icecream, yoghurt and milk shakes with fruit in them - and he can only eat those after I have applied a topical anisthetic. Trying to get near his mouth to do this and give him his other meds is very distressing but the rest of his time today he was pretty happy. More his usual self anyway. A nurse will be visiting on Thursday to flush his central line and check his mouth. Next time I'm getting stronger pain killers for him so he doesn't have to suffer as much and so I can get a bit more sleep hopefully.

So now we just need the ulcers to clear before they give him his dose of chemo next Tuesday or else he will be in a bad way after that. At least we will be more prepared and know what to expect next time.

Each day is one day less on the schedule of treatment and we still manage to fit some fun in most days. The nurse thinks its a miracle we haven't ended up in hospital with his mouth the way it is and can't believe he's still eating - so we are doing well.

We hope you are all doing well too. x

Saturday, October 2, 2010

Fingers and toes crossed and happy birthday from Oscar and Auden

Fingers and toes crossed Oscar doesn't end up in hospital as he is suffering pretty badly with some very nasty mouth ulcers and nausea and vomiting. We are keeping his spirits up by making rocket shaped ice blocks for him to suck on and trying to keep his medication in him. What he would like to be doing today is playing with Ethan at his birthday party.

So, we would like to send out a huge happy birthday today to Nanny, who turns 60, to Ethan for his 3rd birthday party and for Auntie Lisa for yesterday. And that's just in the last two days. Its a crazy week of birthdays so we hope Oscar can recover enough to get out and party with you but, if not, we will light a candle, have some cake and sing for you anyway. Have a great day Libran people and may your wishes come true. x

Thursday, September 30, 2010

Home again with a smile on our face

We are home already from hospital after only 3 nights! Oscar's little kidneys got rid of the chemo quickly and we were very surprised to find ourselves packing up to go home today. Overall, it was a fantastic visit. We had our own room which was extremely lucky and made a huge difference to Oscar's comfort levels. I spent the first night sitting up with him on me and the next day he was fasting until 1.30pm when they took him in for his lumber puncture. That was a hard day but we are getting better and better at these challenges and finding many ways to get through them without too much distress. Trauma is getting less foreign for us and we are grateful for such a great stay in hospital.

The day before we went in the Dr explained that the bone marrow results from day 33 of treatment (the one we found out he was in remission) and the recent bone marrow of day 79 of treatment were being compared to assess Oscar's risk levels. We were told that there were three possible results:

1. Both bone marrow results showed up negative - meaning there was no leukemic cells in either bone marrow sample. This would mean Oscar would have a 80-90% chance of survival.
2. The first bone marrow showed some leukemic cells but the second showed a reduction in the amount. This would mean a 60-70% chance.
3. The first bone marrow showed some leukemic cells and the second showed an increase. This would mean the treatment is not working and result in needing a bone marrow transplant.

Yesterday our results came through and we were overwhelmed with joy that Oscar's results showed the best possible outcome - number 1 above. That is to say both bone marrow results showed negative for leukemic cells.

So - for everyone out there who has been praying/thinking/wishing for Oscar's highest good I would like to say a huge thank you. We have achieved a wonderful result and I am deeply grateful for your support - it has made a huge difference. More than the limitations of words can express.

I also want to say that I am very proud of Oscar. He has had more trauma in his small life than many people experience in a lifetime. There is so much that goes on that we don't share because it is just too hard and big to explain but no matter how hard or how big Oscar keeps smiling and taking it all in his stride. All of us have really done a great job of putting the next foot forward and sitting in trauma, looking each other in the eye and saying, "It's ok, we can do this".

The Dr's have told us that although this is the best possible news at this stage there is a long way to go and many more procedures to get through. We just need to keep doing what we're doing. So please keep reading this blog, sending me messages or thinking of us - it has helped me in ways I cannot explain.

Thank you and hooray for Oscar! Have a drink or two to celebrate!

Sunday, September 26, 2010

Off to hospital

OK, we are in hospital tomorrow AM to sign the papers for admission and blood tests. Then we come home and go back in for admission before 8pm. Then Oscar is fasting from midnight as he will have a lumber puncture on Tuesday morning and they also start the drip of chemo at 6am Tuesday. Fluids will continue via drip until his kidneys have recovered from the chemo - approx. 3-5 days. Then we come home and do it all again a week later and so on for the next two months.

That is always on the proviso that they have a bed available, otherwise there may be some delay. So, fingers and toes crossed we have a good experience with a nice family to share our room with and a positive and quick recovery for Oscar so he can get back to what he loves best - playing with brother.

I am taking my laptop and will attempt to update the blog from in hospital. Thanks again for all your support and if you are able to please come visit us in hospital some time. I will have my mobile.

Monday, September 20, 2010

Monday 20th Sept Clinic

Thanks so much for all the positivity and prayers sent our way today. Oscar's blood results were OK to go ahead and he had the bone marrow aspiration today. This is the one they send to the U.S. but they will know enough to be able to give me an idea about results by the time we go into hospital next week and if there was anything major they would let us know pretty quickly. I have a good feeling about it and Oscar is well.

He did come out of the anisthetic distressed today as they were rushing through a lot of procedures and woke him too early. He was throwing himself around and was extremely heavy and dopey, hitting me and screaming. Nothing a bit of chocolate couldn't fix eventually though.

So, tonight I go back to giving him chemo and next Monday afternoon we go into hospital for 3-5 days for the 'Block M' treatment.

Please keep sending us those positive thoughts and prayers that Oscar's results from today are the best they can be and that his treatment in hospital runs smoothly, his kidneys do what they need to do and that it all works out to his highest good.

Thank you. Thank you. Thank you.

And if you do find some spare time and you have the inclination here are a few things that could help us over the next couple of months during hospital stays:
  • cook a meal for us
  • if you have an old toy that suits the hospital environment then maybe you could lend it to us for one of our hospital stays - it would be new to Oscar and keep him occupied
  • visit us - its very lonely and it would help me to have some distraction
  • send me a text of encouragement or just let me know you are out there thinking of me

Thanks again. Every bit of love you send us comes back to you magnified in many ways and especially by Oscar's beaming smile and my heartfelt gratitude.

Sunday, September 19, 2010

Positive People Power Please

OK, I should have done this earlier than now but have been sick and busy and....Anyway, if you happen to read this before tomorrow, Monday 20th then please send us lots of positive prayers and thoughts that Oscar's blood results are OK to go ahead with the important bone marrow biopsy and that the results of that biopsy are for the greatest good of Oscar.

I say a rhyme in my head: "Oscar's blood is well in each and every cell" over and over and sometimes say it outloud to Oscar all the way to the hospital.

If the blood results are OK to go ahead we usually end up in theatre around 10-11am so particularly think positive thoughts around this time please.

Oscar is open to receiving all your positivity so he can move onto the next phase of treatment.

Thank you for your support and we hope you and your loved ones are well too.



Oscar and Auden painting. They both thank you for all your kind words and prayers to keep them safe and healthy so that they can have fun together.

Friday, September 17, 2010

Update

We are all still home but we are all sick. The Dr was right, Oscar is fighting a virus and now we all have it. Not much fun but although Oscar's temp keeps rising it hasn't quite reached 38 yet. I think the antibiotics and antivirals they have him on are just enough to keep it at bay but not enough to totally get rid of it. So, I have my doubts about Monday going ahead. We'll let you know and keep your fingers crossed we don't go to hospital this weekend.

It would be nice to live in a world again where words had meaning and questions had answers and where you weren't constantly barraged with new and varied medical information. One day at a time, they say. You will find a new normal, they say. But this new normal is one where you don't ever seem to know anything and you are blindly trying to find the best approach without any guidance whatsoever. Whenever we ask a question, the answer is: we don't know. It is hard enough that we don't know why Oscar got this disease or whether he will be cured but the Dr's can't even tell us why some blood tests are so different to others and why other children respond differently. They seem to know so very little about this disease and focus on the treatment protocol without much understanding of how to adjust it to individual variations.

One day at a time - that is all we know and that is hard to live but we have no choice and will have to get past all our resistance and just do it.

Send us some positivity to keep the momentum going please and thank you for every little kind gesture, card, gift, comment, food and favours you have done for us along the way.

Wednesday, September 15, 2010

Wednesday 15th Clinic Visit

We couldn't go ahead with the bone marrow today as Oscar's neutrophils are still zero. The Dr is certain he must have a virus or something he is fighting that is keeping them from coming back up. We have been checking his temperature two hourly around the clock now for a couple of weeks and it hasn't hit 38 yet, but it is up again tonight at 37.7 and he has a runny nose. Living like this, with a hospital bag packed at the front door and checking him vigilently is getting a bit tiresome but so far so good, except of course we can't move forward with the treatment. This is why they say it is a 6 to 8 month intensive period of treatment - delays happen.

The down side to this delay is that his name is not booked for the bone marrow so he usually would have to go on an emergency list. This means that he would need to be at the hospital at 7.30am but may not get taken into theatre until 3pm. Given that he is fasting and usually asking for food from the minute he wakes this would be extremely traumatic. Fortunately, we had Dr Margaret today and she has given Oscar an older child's booking. This means she has the aweful job of ringing the parents of that older child to explain but, as she said, they can tell their 8 year old why they can't feed them. So this is an extraordinary generosity on her part and we are hugely grateful. If he can't go ahead on Monday though she is not in clinic and the Dr is not likely to make these arrangements for our next attempt. I will do the best I can to convince them though and hopefully Monday will go ahead and we won't have that problem.

The other down side to this delay is it means we have to wait longer to get Oscar's official full diagnosis from the U.S. Given that he has been undergoing treatment for three months it would be really good to find out exactly what situation he is in. Also, this extends the period of time he is going without chemo. The Dr did say it wouldn't make any difference to his overall outcome though but I'm not sure how long that remains the case.

The up side is that we just had our first consecutive run of 4 days without hospital or clinic visits since he was diagnosed on June 22nd. It has been a nice break from the endless packing, organising, waiting in queues and so on. Now, if his temperature stays down, we have been granted another 4 days. You've got to take the good stuff and really treasure it.

If we don't end up in hospital before Monday and if Monday goes ahead then we are likely to go into hospital the following Monday to start Block M (if they have a bed). One thing is for sure - there are a lot of 'if's' on this journey.

His other bloods are maintaining well at the moment. Here are the blood results for those who are interested:
Haemoglobin: 114
White cell count: 1.9
Neutrophils: 0
Platelets: 206 (they have dropped by 56 which does concern me a bit as the disease causes this and as he is not having chemo to treat the disease)

OK, if that all makes sense to you then you are doing better than me tonight. Sorry it is so all over the place but well - it just is.

Please keep the positive vibes coming that Monday goes ahead and that Oscar's sniffles don't turn into a visit to the hospital. Who knows, maybe this is a blessing in disguise and we will get 4 full days without treatment and trauma.

Friday, September 10, 2010

Friday 10th Sept Clinic Visit

Oscar's blood results were good today except for his neutrophils which are still at zero. We need his neutrophils to get up to a minimum of 0.5 before next Wednesday when he is scheduled to have his important bone marrow biopsy. All the other blood levels are good to go for Wednesday so I am sure his body will do what it needs to do to get the neutrophils up so he can have the biopsy and move onto the next phase of treatment, known as 'Block M'.

Block M requires 3-5 day stays in hospital fortnightly for two months. If all goes according to plan we will be admitted into hospital on Wednesday 22nd ready to start the drip of chemo at 6am on Thursday 23rd. That drip goes for 24 hours and is coupled with a special vitamin and fluids to help his kidneys excrete the chemo. We will be discharged when his kidneys have done their job which varies from 3-5 days but we are expecting it to be 5 for Oscar with his kidney's. Anything can happen though (and tends to) so we hope for the best and go with the flow.

Today's blood results:
Haemoglobin: 118 (normal is 120-160)
White cell count: 1.7 (normal 5-10, and need to stay above 1.5 for bone marrow to go ahead)
Neutrophils: zero (thinking positive thoughts that they are at least 0.5 please)
Platelets: 262 (normal 150-300) - very happy that they have remained strong this week

We will be staying in seclusion while Oscar has no neutrophils but we will be sure to fit in as much fun as we can. Please keep thinking those positive thoughts and have a great weekend.

Tuesday, September 7, 2010

Tuesday Sept 7th Clinic Visit

Oscar had a great day in clinic today. His blood results were good and we go again Friday to have them checked. Also, his kidney function test showed he is within normal range, although on the lower end of normal range. This is good considering his kidney reflux condition.

Next Wednesday 15th Sept Oscar has the big important bone marrow biopsy. This is the one they send to the U.S. to find out what risk level he is and what treatment protocol he will continue on. Please send out the positive thoughts and prayers that he is within the standard risk. Whatever the statistic, we know he's going to be just fine.

Today Pete took Oscar to clinic and I took Auden down to Long Reef headland. Ah, it was so good to go back to a place where I feel such belonging. The ocean (which Auden calls, 'big water') was a great reminder of how small I am in the big universe and how much energy and power there is out there in the world beyond my own confused brain. Then we stopped in at Ingrid's for a visit which was pure magic. Thank you Ingrid and thanks for all the food too.

OK, big positive vibes for next Wednesday and here are the blood results from today:

Haemoglobin: 117 (Friday's blood transfusion has lifted these to within almost normal range)
White cell count: 0.9 (they were non existent last week)
Neutrophils: (still non existent but they take longer to recover)
Platelets: 236 (normal is 150-300 and they have been staying steady so far for the past week)

Friday, September 3, 2010

Preparing for Hospital

After my last stay in hospital I am determined to ensure our next stay is as harmonious as possible. Now that I know what to expect there are some things I can take responsibility for doing in order to make it easier for the nurses and therefore easier on ourselves. I am putting a list here so I can refer back to it. If you have any experience with hospitals and have any suggestions please let me know.

  • Have a typed out, detailed list of all of Oscar’s medications to give to the nurses on admission (last time they forgot to put his anti-nausea medication on the Dr’s list and it took 24 hours to get a Dr to add it to the list, which meant Oscar felt sick unnecessarily for way too long)
  • Make a ‘Do Not Disturb’ sign for the door with the hours of Oscar’s day sleep written on it and explain to the nurses up front they can’t come in and do a procedure during that time unless absolutely necessary.
  • Before I go to sleep (ha,ha) find out who will be our night nurse and explain the tricks to getting Oscar’s observations (temperature and BP) without waking him.
  • Take the black cover for Oscar’s pram so that if we are in a shared room I can put him in that for his day sleep.
  • Take Oscar’s noise machine so I can play ocean waves during his sleep to block out the noise.
  • Do not give Oscar’s formula over to the nurses to prepare no matter how strict they are on this policy (seriously, they will have to strap me down and drug me to get his bottle away from me this time)
  • Take the poster Auntie Robyn made for Oscar to put up in his room to make him feel more at home.
  • Take lots of DVDs for Oscar
  • Take my yoga and meditation stuff and ensure my IPOD charger is with me.
  • Take the Ergobaby backpack so that if Oscar is hooked up to an IV I can still take him for a walk on my back and push the IV stand (I cannot push a pram and IV stand at the same time)
  • Constantly remind my ego that this is not about me and my discomfort at having no control over my environment or the freedom to make certain choices for Oscar and instead remind myself when I get anxious or angry to think about what love would do in this circumstance. In every situation, no matter how hard, the question must always be – what would love do? (Of course, sometimes when a nurse is inconsiderate of Oscar’s needs the most loving thing to do is correct her but the trick is to do it with grace and not anger). OK, I can intellectually know this – the challenge for me is whether or not I can put this knowledge into peaceful practice.

    Things I can do for Auden in my absence:
  • Update the book Auntie Lisa made about what happens when baby goes to hospital and read it to him and get others to read it to him in my absence.
  • Try to have him out to visit each day and spend some time with him in the hospital playground.
  • Remember how intelligent, resilient, intuitive and remarkable he is and trust him to find his own coping strategies.

Friday 3rd September Clinic Visit

Oscar's blood levels have crashed as a result of the chemo he had this week. He has absolutely no neutrophils and can get an infection from his own skin so we aren't having any visitors until things improve. He had a blood transfusion yesterday but it will take at least a couple of days for his levels to start rising. Last time his levels got this low we ended up in hospital as he had a lot of ulcers and developed the herpes virus inside his mouth.

He already has two mouth ulcers, including one in the exact same spot that they found the herpes virus last time. His temperature was 37.2 when I checked about an hour ago so if it hits 38 we will be heading to hospital again.

There is absolutely nothing I can do to control whether or not we end up in hospital, there is nothing I can give him to stop the virus returning. It has a tendency to do that and I am giving him an oral dose of anti-virals to try to help but it is no guarantee. All I can do is control how I respond and get myself organised in case a hospital visit is required.

Please send us some positive vibes that he is staying home and playing with his brother.

Tuesday, August 31, 2010

A Visit to Nuclear Medicine

Oscar did well today. He went to Nuclear Medicine and had a die put into his system with a nasty needle in the back of his hand and didn’t even cry. The Dr’s thought this amazing. Then, each hour, they took blood from his central line to test how his kidneys were doing at excreting the die. He slept through one of those blood tests and generally made everyone’s day easy by cruising through without complaint. I can definitely learn a thing or two from him.

We will get the results on Friday. We are also hoping on Friday that his haemoglobin has come back up and he doesn’t need a transfusion.

Thanks for your positive thoughts and keep them coming please. Oscar is a wonderful magnet for positivity. Unlike his mother, who is struggling to keep the momentum going and wishing for a shoulder to lean on, a sunlit spot to sleep away the exhaustion and a day filled with dreaming. Oh well, tomorrow is another day and Oscar seems to know the way. (OK, yes that last sentence did rhyme and I am a little delirious with overtired brain fog so I will log off now, I promise).

Monday, August 30, 2010

Monday 30th August Clinic

I woke up this morning and declared to anyone who would listen that it was going to be a good day. Nothing was going to stop us from having a good day. Clinic was insanely busy - some people waited 4 hours just to get a blood test. There were people having blood transfusions in the hall way. Total chaos.

We were lucky. Oscar's bloods were good enough for him to go ahead with the 6 hour treatment. There were few seats left in the treatment room so we cruised around on his IV drip stand. Children were fighting over the DVD player and ended up breaking it. I was determined to have a good day so I took control (yes, I know, I can't help being a control freak). I fixed the DVD player and told all the children they could choose one DVD each and would have to take turns waiting for their choice to be played. They had to choose G rated for the little ones. I gave them limited options but they seemed to go along with it. The nurses were way too busy to be dealing with stupid fights over the TV.

It ended up being a good day - my determination to make it so actually worked. Just goes to show the power of the mind when you can get it working for you (which can be a challenge at the best of times). I even convinced Oscar to sleep in his pram for two hours, then stole a pillow from a room down the hall and curled up on the floor for my own nap. Seriously, you gotta do what you gotta do sometimes.

Blood results:
Haemoglobin: 78 (will need a transfusion if it drops below 70)
White cell count: 1.1
Neutrophils: 0.3
Platelets: 123 (within normal range again!)

Tomorrow is the kidney function test so please send us some positive thoughts that his kidneys are up to the task of coping with all this chemo. Friday, back in to check haemoglobin levels. This is supposed to be our two weeks off and is more hectic than an average week but as long as Oscar gets better who cares?

Saturday, August 28, 2010

Photo's


Eating a cup of chocolate after Oscar's meds




Oscar after a month on steroids




We have a picnic every sunny day we can



Wrestling with brother - almost every minute




Chasing and loving the cats


In between hospital visits we try to fit in as much fun as we possibly can. I never get time to write about the fun stuff so here are some pictures instead. Oscar has lost more hair this week and is looking different still so I'll try to get some more downloaded soon.

Friday, August 27, 2010

Friday's Clinic Visit

Today Oscar's platelets had risen slightly to 30 so they are on the way up and he should be ready for treatment on Monday. No transfusion was given.

So, next week should hopefully be a full days treatment on Monday and another long day Tuesday for a kidney function test and then I think we get a short break before we start the next phase of treatment.

Blood results today were:
Haemoglobin: 88 (normal 120-160)
White cell count: 1.8 (normal 5-10)
Neutrophils: 0.0 (neutropenic again)
Platelets: 30 (normal 150-300)

Wednesday, August 25, 2010

Wednesdays' Clinic Visit

Oscar's platelets have dropped lower so we could not go ahead with treatment again today. The Dr said it was nothing to be concerned about because platelets are produced by the bone marrow, platelet counts decrease during chemo treatment. A transfusion is only given when they drop below 20, Oscar's are at 23, so no transfusion yet. We go back to Clinic Friday when the Dr thinks one of three things will happen:

1. His platelets will have dropped below 20 and he will be given a transfusion and sent home to come back on Monday for treatment.
2. His platelets will have started to rise again but won't be above the 50 required to go ahead with treatment - so we will go back home and come in for treatment on Monday.
3. His platelets will have risen above 50 and all the other blood levels will be sufficient that he can have the treatment on Friday.

The Dr's bet is that it will be number 2.

I gave Oscar his last dose of chemo for this phase of treatment last night so his body will start to build back up again. Once the chemo with the 6 hour drip is complete, most likely on Monday, then he gets a break before we start the fortnightly hospital stays of 3-5 days.

Blood results were:
Haemoglobin: 96 (normal is 120-150)
White cell count: 3.1 (normal is 5 - 10)
Neutrophils: 2.1 (not neutropenic)
Platelets: 23 (normal 150-300)

Monday, August 23, 2010

Platelets too low for treatment today

Today Oscar's blood results prevented him from having the chemo and 6 hour drip they were hoping to give him. His platelets were too low - they needed to be at least 50 and were 47. It took 4 hours just to find this out. We will be back in clinic again on Wednesday and hope his blood results are good enough to go ahead.

For those who are interested his blood results were:
Haemoglobin: 102 (normal 120-160)
White cell count: 3.6 (normal 5 - 10)
Neutrophils: 2.6 (the highest they have ever been and no longer neutropenic)
Platelets: 47 (normal 150-300, transfusion required when they drop below 20)

Don't ask me how the platelets are going to go up without a transfusion as I have no idea, especially as I am still giving him chemo each night (which kills blood cells and platelets) but we will wait and see. I'll update you Wednesday.

Keep sending us the positive vibes. Oscar loves receiving them.

Saturday, August 21, 2010

Oscar's Central Line




I thought you might be interested in seeing Oscar's central line. In the picture he has the ends of it in a monkey pouch given to him by the nurses. The central line is a soft flexible tube made from silastic, which is placed into a large vein near the heart. This is done in surgery as soon as possible after diagnosis. Oscar had his within 24 hours.

Basically, the central line is the easiest, least painful way for the nurses to take blood and administer intravenous chemo or other drugs. It's pretty ingenious and we are very grateful that he doesn't have to have a nurse search his collapsing veins for hours, which is what happened our first day in casuality.

He will have it in for two years and can't get it wet at all. We've developed a special apron for bathing and will have to sort something out for summer water play. Many, many kids end up, at some stage, pulling it out. This isn't that easy to do because there is a loop in the line so that if they accidently pull on it they don't actually tear at the skin that it is encased in. Many other children sometimes actually chew through the line as well. Some manage to do both at the same time. Hard to believe but they tell us its more common than not and to expect it to be part of his journey. We have emergency procedures if any of those things happen.

Eventually, I will need to learn how to change the dressing and how to flush the line with saline solution. For now, the nurses are kindly doing that for us.
So far Oscar pretty much ignores it unless a nurse is taking blood and then he sits in complete facination watching her with it. They all think he's exceptionally good at letting them take blood and give drugs which are cold when they go in. Many kids scream. Oscar just laps up all the attention and asks constantly for a sticker (they give them out as rewards).

Wednesday, August 18, 2010

Quick Update

We've had a long day in hospital today so this will be a quick update as I know people will be wondering how it went.

Basically, Oscar had a lumber puncture today and a blood transfusion. His haemoglobin was only just below the minimum before transfusion but we opted to give it to him today so he can feel good over the weekend. He took a long time coming out of the anaesthetic today but seemed fairly happy tonight.

On Monday, if his blood results are sufficient, he will have a full day of chemo and a 6 hour drip of fluids. If his blood results are not what they require he will come home and go back again on Thursday to see if he is ready to have the chemo and drip then. This will complete the induction phase of his therapy.

After that, he has two weeks off treatement to allow his white cell count to come up. Then he will have a bone marrow biopsy. This is the really important one they send off to the United States to confirm what level of risk he is and therefore which protocol of treatment he will receive. We are hoping that he is in the standard risk category with the least intensive treatment.

Once he has had the bone marrow biopsy he starts the next phase of treatment which involves a 3-5 day stay in hospital every second week for two months. The length of each stay will depend on how quickly his kidneys are able to excrete the excess fluids from the treatment. This will be a true test of Oscar's kidneys due to his kidney reflux condition. We are hoping he doesn't have to stay longer than the average of 4 days.

Please keep sending those positive thoughts and prayers toward Oscar's greatest good in this journey he is taking.

Aside from that, we have also been busy with a visit this afternoon from Sydney In Home Child Care. This is a service offered to families with a child with a life threatening illness and allows the siblings to have child care in the home (because going to a child care centre is not appropriate due to the germs the sibling will bring home). We have been approved 50 hours a week of care by centrelink and are waiting to meet a carer tomorrow. We are hoping she is the perfect match for our family, especially with all this hospital time coming up. Auden will be needing some special attention too during this time so please send him some positive vibes that his carer and his experiences during this time are full of love and light.

We will also be needing help from family and friends, particularly during hospital stays but I will explain more about that when it gets closer.

I have to go eat and sleep now so please forgive me if you are waiting on a phone call. I will endeavour to catch up when I can. Just know that all is well and thanks for keeping us in your thoughts.

Sunday, August 15, 2010

What really matters

OK, enough boohooing and back to what really matters: Oscar’s medical status.

They checked his blood levels today and they are ok but he may need a blood transfusion on Wednesday. He is having another lumbar puncture on Wednesday so he will be fasting from midnight tomorrow. We are currently completing the last week in the second phase of treatment so the chemo schedule will change next week but we aren’t sure yet what the next phase will be – it will depend on his blood results. He will be due for another full day in the hospital with a 6 hour drip if his blood results are ok and then we will have to wait and see what comes next. There is a phase where he will be in hospital for 4 days every second week – and this happens over two months so that he has 4 stays of 4 days. This is the only scheduled hospital time – any other hospital stays are due to temperatures, illness etc.

Physically he is improving and starting to stand properly on his right leg now. This is great news as it means he won’t have to have the bone scan that was scheduled for this week. We are very grateful for this as the test is usually done under anesthetic but as he has had so many of them they wouldn’t let him have another – which would have meant strapping him down and letting him scream for the full 45 minutes of the procedure. Phew – so thankful not to have to go through that.

His hair is coming out now in handfuls but we are told it often grows back thicker and curly, which will make Oscar happy as he might get to have curls like his brother and basically all he wants at this point in time is to be exactly like his brother.

His weight is steady which is particularly good as many children have started to lose weight at this stage as the chemo reduces their apatite. He snacks all day and clearly isn’t that hungry but still drinks his bottle and is doing well at maintaining his weight so far.

That’s about it for now. We will update you when we know what the next phase involves.

Many thanks again for all your kind comments, encouragement and support. We are blessed to have so many people caring about us on this journey.

Here are the blood results for those who are interested:
Haemoglobin: 72 (normal 120-160) – may need transfusion Wednesday.
White Cell Count : 1.0 (normal 5 – 10)
Neutrophils: 0.3 (still neutopenic)
Platelets: 196 (within normal range of 150-300)

Wednesday, August 11, 2010

Hospital

Sorry for not having updated the blog but we have been in hospital for five nights, arriving home exhausted and traumatised last night. So this is my first opportunity to fill you in.

Last Thursday night at 6pm Oscar's temperature hit 38 and we had to head in to emergency. They were informed of our impending arrival so that when we arrived we would not be sitting with the general population and exposed to germs. I arrived at 7pm and was put in a small isolation room where the nurses took a full history, took his bloods and did hourly observations of his temperature and blood pressure. Emergency was like a war zone - one of the busiest nights they have had in a long time - and as I looked around outside my window at queues of people sitting on the floor holding sick, injured or hysterical children I couldn't help thinking about what it would be like if you were a survivor of a natural disaster like a tsunami, flood, etc. There seem to be so many of them in the news these days and I cannot imagine what it would be like to be in trauma without any proper care, let alone compromised care. I felt very lucky to have my own room and to have nurses attending to us.

I knew it would be a long wait so I settled Oscar in his pram and sat and read, promising myself no matter how frustrating and exhausting the process was I would stay calm. I would be Gandhi, full of wisdom and non-violent good will. At 2am we were finally sent to a room on Variety Ward where there are isolation rooms - because of Oscar's exposure to chicken pox we weren't allowed to go back to the familiar Camperdown ward, which is the children's cancer ward that we spent 17 days in at the beginning of this journey. I had to wake Oscar to put him in a cot which they wheeled up to his new room. Before we left the nurse took his temperature and blood pressure so I was a tad frustrated when they wanted to take it again when we arrived in the new room just 5 minutes later. It woke and upset Oscar as he was sick of being messed with, scared of being wheeled into a new room in the middle of his sleep and not coping with the relentless poking and prodding. I didn't say anything though as they are just doing their job and it is hospital policy they have to follow. I am getting to know the bureaucracy and trying hard to be patient with it even when it does cause Oscar what I consider to be unnecessary disturbance. Seriously, could his temperature have changed in five minutes? I reminded myself - you are Gandhi - be calm.

Of course, after sleeping soundly in his pram in emergency where I had nowhere to sleep, now that we are in a room with a sofa bed for me Oscar screams his head off for the next couple of hours. The movement into a new room and a new stranger taking yet another blood pressure sent him into extreme distress. I felt my own heart tearing as I tried to calm him but he had been pushed beyond his limit. I wanted desperately to point out to the nurse that he has been an angel and has incredible tolerance. Every other young child in emergency was relentlessly screaming their lungs out and he managed to cope with a team of strangers in a very bright fluorescent room coming at him from all directions with such grace - could they not just have rewarded him for being one of the few children who had required almost no attention in a place of trauma? Could they not have let him alone for another hour to settle? Ahhhh

At 4am he finally slept, at 5am they woke him taking observations, 5.30am back to sleep, 6am more observations and blood taken and then no return to sleep. Oscar was wired and anxious and jumpy for the rest of the morning. Our nurse was unfriendly and gruff with us and wanted to take blood with a pin prick in his finger despite the fact that he has a central line for that very purpose - to make it easy and painless for him. And so on.

The next shift of nurses came to convince me to hand over Oscar's formula so that they could prepare them in a sterile environment and have them in the fridge ready. I resisted this after my experience last time where I was at the whim of nurses to bring Oscar his bottle and ended up setting up my own miltons and making them myself so he wouldn't have to wait when he wanted his comfort bottle. This is the one thing left that I can do for him. I cannot protect him from the pain, the traumatic procedures, the constant stream of strangers poking and prodding him, the exhaustion of the disease and the drugs that cure it. In hospital I can't even give him the comfort of his own bed, his brother, his daddy etc etc. Literally the only things I have left to give him are my good humour, my cuddles and his bottle. So I didn't want to give away control of the bottle but they insisted it was hospital policy. I warned the nurse, "If I can't get a bottle when he is distressed and wants one you will have an hysterical mother on your hands. Please hear me when I say this to you." Don't worry, she says.

Of course when he wanted his bottle 3 hours later they still hadn't made them up and had to go to the dietitians to get my formula back to make them. It took another hour and a half to get it to Oscar's mouth. By that time he was hysterical, banging his head on the cot and saying over and over, "bobble, bobble, bobble" (his pronunciation of bottle). I felt so anxious and distressed I absolutely lost my mind at the nurse who had promised me this wouldn't happen and finally the bottle appeared, not warmed as promised and Oscar threw it at the floor and threw himself down on the cot beyond hysterical. He wouldn't let me cuddle him, he was hitting me and I just couldn't breath. I felt trapped in an isolation ward of hell.

I won't bore you with what the next 5 nights and days involved but it was like that only sometimes significantly worse, sometimes better. The relationship of trust they say they try to build was well and truly broken and I was stuck in a small room with a toddler who wanted to go outside and play, couldn't get his bottle when he needed it, missed his brother and daddy, had a mouth full of infected and huge ulcers, was attached to two iv drips at all times that twisted around his body as he played and tore at his central line - and there was no other choice.

This experience has deeply traumatised me, more so even than the early days of his diagnosis. It is tremendously challenging having a child diagnosed with a life threatening illness but to also feel a distinct lack of professionalism and quality in the care of your little baby going through this journey is another kind of distress. So I feel a need to withdraw, contemplate, do yoga and meditate each night and try to find my way through this darkness back to the light and the positivity that Oscar needs and deserves from me.

I am deeply disappointed in myself for not being as evolved a human being as Gandhi was - but then Gandhi wasn't a mother.

Please keep sending your positive vibes and prayers and I will update you with more of the medical stuff soon. I just couldn't get it all together in my head to explain what is coming up next. We are in clinic tomorrow, lumber puncture Monday, bone scan Wednesday and yet there is more. I will tell you soon.

In this moment of now I must retreat and find some peace.

Thank you again for taking this journey with us.

Monday, August 2, 2010

All Is Well

Oscar had a good day at hospital today. I managed to keep him distracted while waiting for his anesthetic and lumber puncture despite his hunger and he was first in at 10.00am. What a blessing! His blood results were ok - nothing unexpected.

He has a break from anesthetics next week, with his next lumbar puncture the following week. The nurse is coming out on the other days and we are not back in there until next Monday to check his blood results and make sure he is tracking along well.

I actually got to talk to our Doctor today and he explained that the next bone marrow, which is in about 30 days time, is particularly important. They define his current remission as less than 5% leukemic cells in the marrow but their microscope cannot see the specifics of how much withing that 5%. So the next bone marrow sample gets sent to the United States where they can analyse it to a much more accurate level and provide us with more information. His treatment will then be assessed based on those results.

For now, we sit with the uncertainty with grace and have faith that all is well.

Please keep sending us those positive vibes: we are focusing on Oscar staying at home and well, ensuring the chemotherapy does the job it needs to do without compromising his quality of life and keeping him happy, smiling and dancing.

Wednesday, July 28, 2010

Oscar's in Remission

Oscar is in remission!

What does this mean? Well, from a medical point of view, it means at this point in time there are no blast (leukemic) cells in his bone marrow. This is generally what they need to see at this stage in his treatment. It also means he stays on the standard treatment protocol. This is a huge relief for us as we are glad for Oscar that he will not have to have any more aggressive treatments than the ones he is currently enduring. It's hard to imagine something more aggressive than what he is currently going through so we feel very grateful. Also, the long term side effects are less severe, so all in all, its good news for Oscar.

So now we are focusing on keeping Oscar in remission and doing everything we can to keep him out of hospital, healthy, happy and living a relatively normal life. His temperature has settled and we feel confident that he is coping today with the new chemo treatment. He really is amazing and resilient and keeps fighting back and we are very proud of him.

Being at home isn't just about convenience - he is happier here and when he is happy he is healing. Since we came home he has continually improved so we are doing all we can to keep him here.

Whatever the statistics, the medical science and the comparative analysis the doctors wish to throw our way we know that Oscar has the fight in him to get through this. It is nice to know that he is staying on the least invasive treatment and in this moment of "now" we feel incredible gratitude for this.

There are many young children going through similar procedures and treatments for cancer and wishing for some positive news so we send them and their parents all our thoughts and feel deeply blessed that today is a good day for Oscar.

We also thank you again for your thoughts and prayers - people power works and Oscar is lucky that so many people are sending him positive vibes. Keep sending them his way please - he is a good receiver.

Tuesday, July 27, 2010

No real results yet. The Doctor's know enough to deem it suitable to go ahead with the next phase of treatment but don't know enough yet to explain Oscar's prognosis, risk category and long term effects of whatever treatment protocol will be applicable to him. Maybe tomorrow I will hear more.

We have had two very long very traumatic days in hospital. The lumber puncture and bone marrow biopsy required anesthetic again and the whole starving your child and waiting for the Doctor's to take him into surgery. Arrived at hospital 7.30am, in surgery 10.45am. One child had to be sedated as she was banging her head on the floor screaming for food. I wish they had of been kind enough to sedate the mother, and all us other mothers while they were at it! I am very grateful to Oscar for handling it so well.

He's had a new chemo today which requires a 6 hour drip of fluid to protect the kidneys from the dangerous side effects. It can cause fevers and flu like symtoms. His temperature started to rise but stopped at 37.6. If it reaches 38 tonight we will be back in hospital for a week as they cannot guarantee its a reaction to the chemo. Fingers and toes crossed.

The new phase of treatment is overwhelming and as he is still transitioning from some of the medications from the induction phase we are having to wake him at night to give him his oral chemo. This is the first chemo we have had to administer ourselves and its not the most comforting of experiences. If we are still home in the morning the nurse will be coming to visit.

Next week we are in hospital Monday for another lumber puncture and another anesthetic. Tuesday in hospital for chemo and, all going well, the nurse will be out each other day of the week.

Oscar hasn't stopped crying for the last three hours on and off and appears to be in discomfort with this new medication. I have just been patting him for the last couple hours. Pete is now having a go. We may have to just take him in to hospital. If so, we will try to update you when we can.

As always, we are grateful for all your support and while we are overwhelmed beyond imagination right in this moment of "now", I know that all these side effects, traumatic procedures and nightmarish waiting periods are just temperory. Tomorrow is another day and the next "now" is bound to be full of promise.

Thank you for taking this difficult journey with us.

Friday, July 23, 2010

Oscar has a big day coming up on Monday

Today we went to clinic for the last chemo of the induction phase of treatment. This means no more horrible needle in the muscle - Oscar says hooray! The chemo in the next phase of treatment is all given to him through his central line, which is painless and simple. Also, we are slowly phasing out the steroid which has caused him so many discomforts and his high blood pressure. So we are grateful to be moving onto the next phase of treatment.

Today the Doctor advised that the bone marrow lumber puncture on Monday is the crucial one. He expects and needs to see less than 5% blasts (leukemic cells) in the bone marrow. Please keep us in your thoughts and prayers for this result or better for Oscar. The Dr thinks he should have results as soon as Tuesday.

We will be at the hospital at 7.30am Monday and provided there are no emergencies that morning Oscar should have his anesthetic not too long after we arrive. Depending on his blood work the Dr's might also start his new chemo regime on Monday.

The next phase of therapy requires one full day in at the hospital at the beginning and the end of the month long treatment. This is because one of the drugs they are giving him requires a 6 hour drip of fluids to help his body cope. Then, the next three days of each week a nurse will come out to our home to administer the rest of the chemo treatment. The Doctor is spending more time with us on Monday or Tuesday to explain this more fully - so I'll let you know of any updates.

Keep us in your thoughts and prayers and we will tell you as soon as we know what the outcome is. We have a good feeling its going to be good news.

Wednesday, July 21, 2010

Children Learn What They Live

As we slowly wean Oscar off the steroid drug he is becoming active. For the first time in 6 weeks today we saw Oscar crawling around, rolling off the lounge and crash landing on his brother. I can’t explain what a magic moment this was. The two of them playing together and laughing after weeks of not being able to connect the way they usually do. Auden was delighted and kept saying, “Mummy, baby happy”, pronouncing it loudly and proudly (a wonderful improvement from, “Mummy, baby crying, baby sick”). They giggled and it was like Oscar had never been sick.

They both seemed so grateful to have each other to interact with again. Auden was very caring and loving, asking Oscar if he was ok and patting his head when they tumbled and crashed into one another. Oscar just laughed and didn’t show a hint of pain, consumed so much by the joy of brother love. They ended the day with their first bath together since Oscar got sick all those weeks ago and it was like a true coming home for all of us as a family.

We are very proud of our little boys. Seeing Oscar today moving and trying to use his aching bones reminded us of his incredible resilience. From very early on in his life I have always said that whatever he came here to do there was nothing that would stop him. Our paediatrician nicknamed him, ‘the can do kid’, because that is his nature. We have every faith in him as a little person with great tenacity to do all he can to fight the disease he has been inflicted with. Every day we see his strong spirit in the way he copes with the medical procedures and other nasty things on this journey to health - and still he laughs, he smiles, he shines. And today it was so precious to see him 'doing' again.

We are also very proud of Auden and his ability to care and love and show empathy in his own unique and clever ways. It hasn’t been an easy time for him and he has been very confused as to why baby won’t play with him, why mummy and daddy have been away so much and why Oscar has been crying all times of the day and night. He has handled it beautifully.

We are very grateful to be so blessed.

Here is a quote from one of the text books the Doctor's gave us to guide us through the journey. You probably already know it but it is a favourite of mine:

Children Learn What They Live
If a child lives with criticism, he learns to condemn.
If a child lives with hostility, he learns to fight.
If a child lives with ridicule, he learns to be shy.
If a child lives with shame, he learns to feel guilty.
If a child lives with tolerance, he learns to be patient.
If a child lives with encouragement, he learns confidence.
If a child lives with praise, he learns to appreciate.
If a child lives with fairness, he learns justice.
If a child lives with security, he learns to have faith.
If a child lives with approval, he learns to like himself.
If a child lives with acceptance and friendship,
He learns to find love in the world.
- Dorothy Law Nolte

Monday, July 19, 2010

Doctor's Report

The Dr today confirmed that the last bone marrow biopsy showed a dramatic reduction in blasts (leukemic cells - immature blood cells which rapidly divide and crowd out the healthy cells) in Oscar's marrow. This is what they expected to see. So we are on track and heading in the right direction. The big important bone marrow biopsy will be on Monday - this is the one they are waiting on before they can give us a clearer prognosis.

So please keep the prayers and positive vibes coming our way as we get closer to Monday and the following weeks of waiting for the results.

Also, the fact that Oscar hasn't lost his hair doesn't mean the chemo is not working - about 5% of people don't loose their hair. He may still do so though.

Blood results:
Hb: 114 (almost in normal range of 120-160)
WCC: 2.0 (below normal range of 5-10, but chemo kills white cells so this is to be expected)
Neut: 0.2 (still neutropenic)
Plts: 244 (within the normal range of 150-300)

We are grateful for every kind word, prayer and thought that you have for the greater good of Oscar and his journey to health.

Sunday, July 18, 2010

Oscar's Update


No results from the biopsy yet, but as some very wise and kind people have said, it just gives more time for the positive vibes to build up for Oscar. So keep thinking those positive thoughts and saying those prayers for Oscar to go into remission as early as possible, as this is the greatest indicator of a good prognosis.


This week we are in at the clinic again on Tuesday and Friday (for another biopsy). Clinic days are endless waiting and are hard on Oscar because he doesn't get his day sleep and he gets nasty needles. The good thing about Clinic, though, is that we get to meet lots of other people in similar situations and hear their stories. This is a great opportunity to hear more about the journey as Dr's really don't tell you much unless its absolutely necessary. Families can give you the practical tips that you really need to adjust to your new 'normal' (never liked that word anyway). It also reminds you how grateful you are because there are a lot of people in worse situations than your own. We wish each and every one of them good luck on their journey's to health.


Oscar's weekend was interupted by a quick trip to the hospital, after we were chatting to our new neighbour, who told us her daughter had chicken pox. Any exposure to chicken pox requires a Varicella Zoster Immune Globulin injection. Even though we hadn't been exposed to the child, just talking to the mother was deemed by the Dr to be sufficient to warrant a needle. Poor Oscar, just being neighborly did him no favours. His bottom is so bruised from the chemo injections they had to put it in his little thigh. He kept saying "car, Daddy, brother, home" - can't say I blame him. We were all glad we didn't have to stay in there.


We will keep you updated after our clinic visits and we hope you all have a good week. Send us all your positive vibes please. :)

Monday, July 12, 2010

No Biopsy Results




OK, a quick update. No biopsy results as our Dr is away this week and they were short staffed and it was all a bit of a rush and confusion in there today. I have put in a request for someone to go through them with me on Friday but it may not be until next week when our Dr returns.




Thanks for all the positive thoughts and prayers and please keep them up for us.

Oscar will have yet another biopsy next Friday so they may wait to go through everything together then.

His blood results were good today, except for his neutrophil count which fell to 0.1. Any neutrophil count below 1.0 is considred neutropenia. So he is as low as he can go before they have to put him in hospital to isolate him from infection. Blood pressure was up again and they will be concerned to check that on Friday and if its not better may need to look at another hospital stay or an adjustment of the drugs. He starts to taper off the steroid medication next Tuesday so then the blood pressure issue should resolve.

For those who are interested the rest of his blood results, here they are:
Haemoglobin: 117 (normal range is 120-160 - but don't need transfusion until it drops below 70)
White Cell Count: 1.5 (normal range 5-10 during chemo treatment this is expected to drop)
Platelets:118 (normal 150-300 but no transfusion until they drop below 20)

Thanks again and lots of love to you and all your families.

Sunday, July 11, 2010

Your Help Please

I believe that the thoughts and words we choose to focus on or put energy into have a powerful effect on our lives. Studies have proven that collective meditation, prayer, positive thoughts or affirmations can make a real difference in the circumstances of our lives. The more specific you are with your thoughts, words, prayers, and desires - the more you are likely to manifest the specific outcomes you are desiring.

Tomorrow we will be getting the results of Oscar's bone marrow biopsy and current research shows that children who go into remission in the first 4-6 weeks have a better prognosis.

So, whatever your belief system, could you please all take time out at 7pm Monday 12th and either think a positive thought for us, prayer for us, or send some positive energy our way. It has been shown that if you all do it at the same time the collective power of your consciousness is more effective.

Insert your own belief system - I have no prejudice for any particular religion, philosophy or approach - they all lead to the same positivity as far as I am concerned.

Please try to be specific in your thought/prayer/meditation, for example:

"Oscar's bone marrow is clear and he is in remission"

This is something very real and very practical that you can do each night at 7pm for us or whenever you remember.

Listen. I believe everything we dream
Can come to pass through our union
We can turn the world around
We can turn the earth's revolution

We have the power
People have the power

Patti Smith