Preparing for Transplant, 19 Dec 06 to 14 Jan 07

Tuesday, 19 December

Olivia had to have another blood test at around 7.30 this morning. She ended up having the blood taken from her arm as her fingers weren’t bleeding all that well after the finger prick. This was mainly to check her white cell and CD34 count (CD34 positive cells are the ones needed for collection). We had to wait a couple of hours for the results. Olivia was due to have an MIBG scan today. The MIBG scan requires an injection of radiation. The radiation then attaches itself to any neuroblastoma cells in the body. The scan is then performed the following day. Unfortunately, this scan had to be cancelled due to the possibility of Olivia having her stem cells collected, which cannot be done with any radiation in her system. We realize the stem cell collection is paramount at the moment but we were disappointed that she was unable to have the scan. This scan could have given us a lot of information about Olivia’s current condition. The staff in nuclear medicine weren’t too thrilled with this news either as it costs $900 just for the injection and it has a very short life. There was no chance of re-booking the scan until later in January, which means after transplant. As it turns out, Olivia’s stem cells still weren’t ready for collection. This also meant that we had to continue with 4am and evening G-CSF injections and repeat the blood test at 7.30am the following day.

Wednesday, 20 December

Once again, we began the day with a blood test. It was becoming increasingly difficult to take enough blood from her finger for the number of tests that were required. The pathology nurses persevered and got just enough after several finger pricks. We usually insist on finger pricks as they are the least distressing for Olivia. We had to wait again for a couple of hours for the results.

We then took Olivia off to her dental appointment. Her teeth were fine. However, the dentist did seem to think she may be developing something called hyperplasia (unsure of spelling), which is a band of discolouration across her teeth and the result of chemotherapy. He only noticed it on one of her molars. He pointed it out to James and I but we couldn’t see it. He said it will most likely become more obvious when her adult teeth come through.

We took Olivia to her audiometry appointment. They did several tests to check her level of hearing. Some of the results were inconsistent but they got enough information to establish that she has most likely developed a mild to moderate hearing loss (high frequency sounds). We expected to hear that but were disappointed, naturally. This is a permanent loss and is the result of Cisplatin, one of the chemotherapy drugs. They could only obtain information from her right ear as her left one was quite waxy. At this stage, a hearing aid probably won’t be needed but she may eventually have trouble listening with background noise. Apparently, Cisplatin can continue to deplete her hearing over time, even if it is no longer used.

Olivia’s blood test showed that she still wasn’t ready to have her stem cells collected. However, they did show that she required platelets.

Our next appointment was with Olivia’s radiation oncologist. Another meeting I was not looking forward to. We had to wait a while before seeing her and Olivia was becoming quite bored. Thank goodness, the doctor had brought in some ‘radiation’ colouring in books for her to keep her amused. Dr ‘C’ was lovely. She seems quite young and has young children of her own. She had a great rapport with Olivia and certainly put us at ease. Radiation is part of Olivia’s treatment protocol and Dr C basically filled us in on what will happen throughout Olivia’s course of radiation. Olivia will require 14 doses of radiation under a general anaesthetic. This will take place every day (except weekends), approximately 6 weeks after the start of transplant. Radiation will be given to part of Olivia’s spine, where the tumour most likely began. This will involve several vertebrae. The side effects of this treatment is likely to include nausea, vomiting and pain. Long term permanent damage will impact on her growth and she will most likely be about two centimeters shorter than what she would have been. Radiation can have a serious impact on the growth of children because their bones haven’t finished growing. Dr C said that radiation has a greater effect on bone growth when it is applied to the long bones such as those in the arms and legs – kids who have radiation to these areas usually end up with one limb shorter than the other. Apparently, the spine doesn’t grow quite as much.

Olivia will also require radiation to her head as that was the major site of metastasis. Dr C was unsure about how to approach this area and needed time to review her previous MRI scans and consult her colleagues in the US. She seemed to think that radiation in this area will most likely affect her pituitary gland, which is responsible for releasing growth hormone. This will mean that when Olivia is older, she will require regular injections of growth hormone. However, these are all unknown factors and we won’t know more about this until Dr C visits us in transplant in early January. We’re just going to hope for the best. Once again, I left her office feeling a little overwhelmed.

Later in the afternoon, we had to head over to one of the wards for Olivia to have a platelet transfusion. This took about an hour and a half.

Thursday, 21 December

Olivia had another finger prick at 7.30am. She was then admitted for the day in one of the wards as she was due to have a CT scan under general anaesthetic later in the morning. Of course, she had to fast again. This is often a huge challenge as she is constantly requesting food in the morning and we have to explain to her that she has to have a special test first. Believe me – this is very difficult to explain to a two year old!
Sometimes I wonder if this is actually harder on us, especially James, as we have to fast along side her! James loves his food and usually grazes all morning. However, he usually disappears for quite some time while we’re waiting to have the ‘special test’.

The anaesthetic doctor came to speak with us prior to the scan. I suggested to him that Olivia may be able to keep still for the scan without an anaesthetic. She did it once when she was first diagnosed, so I figured she could probably do it again. He thought that it might be a good idea to try it. And we did. I went in with her to hold her hand throughout the scan. I emphasized to her the importance of keeping very still throughout the procedure so that they could take some good pictures of her head, chest and tummy. She was brilliant, she didn’t move. The staff in CT were amazed that a child her age could manage to remain still throughout the whole scan, which took up to about 40 minutes. At the end, the staff were so thrilled they all came out and sang ‘The Wheels on the Bus’ to her and gave her a certificate and a stack of stickers. Olivia was so proud of herself and so were James and I.

Once again, Olivia’s blood count wasn’t good enough for collecting stem cells today. Therefore, we have to repeat the 4am injections and 7.30am blood test tomorrow. The doctors prescribed a double dose of GCSF, in an attempt to enable stem cell collection on Friday (they only collect the stem cells on week days).

We took Olivia down to Coogee beach late in the afternoon. She loved it.

Friday, 22 December

We did the injection and blood test this morning. We were really beginning to think that we weren’t going to make it home for Christmas and were beginning to make plans for one of us to return to Canberra to get Sarah. We just had to wait to hear the results. Olivia had two tests today. She had an echocardiogram at 9am – this was to look at the condition of her heart and how well it’s functioning. Everything was looking good there. We then had to take her up to Nuclear Medicine to have a test that looks at her kidney function (GFR). This test involved a couple of injections of radioactivity over a three hour period. I’m sure the results were fine.

We were later told that Olivia still wasn’t ready to have her stem cells collected. Later in the day, I met with the Professor (Head of Pediatric Oncology at the hospital) to discuss the plan for the next few days and Olivia’s scan results.

The prof told us that we would be able to go home for Christmas. I was so relieved! He explained to me what the plan would be and that Olivia would require a blood test on Christmas Day and we would need to return to Sydney on the 27th. I was disappointed that we would be spending my birthday in Sydney, especially since I’d organized to have a big birthday dinner with my friends. I was really looking forward to catching up with everyone. However, Olivia comes first! We can have a dinner when we get back.

The prof also told me that Olivia’s CT scan had shown that it appears that the tumours from her head have gone but she would require an MRI for them to be sure. An MRI will show more detail than the CT scan and will identify if there is anymore residual tumour in her head. Apparently, there is still a very small mass in her spine. The prof seems to think that she may be in a ‘very good partial remission’ meaning there is probably only ten percent of disease left in her body. The doctors like the kids to be in ‘complete remission’ prior to transplant but both the prof and Olivia’s usual oncologist seem to think that she’s on the right track. Hopefully, the transplant will mop up the mass on her spine and anything else that’s left.

Saturday, 23 December

We headed back to Canberra in the morning. This whole weekend ended up being a mad rush. There was so much to do around the house and a fair bit of preparation for Christmas. It was full on! Also, we were expecting to head to Sydney for a couple of months next time so we wanted to be pretty organized. I won’t go into all the details of the weekend as it was just chaotic.

Christmas Day

We all got up at around 7am to open presents. Olivia was pretty excited. She had a much better understanding of it this year. Santa gave Olivia a bike but unfortunately, she had discovered it in the study a couple of days beforehand and kept asking me if she could go for a ride on the bike in the study! We, therefore, had to give it to her earlier and told her that it was too heavy for Santa’s sleigh so he delivered it early.

The girls were very spoilt by Santa. I guess they deserve it. It’s been a rough year. James took Olivia to Canberra Hospital for her blood test in the morning. It ended up taking hours. They did a finger prick but the blood soon clotted and they then had to take some more blood so they took it from her arm! She wasn’t too happy about this as you would imagine.

James and Olivia soon made their way to Mum’s house. Once everyone arrived, we opened more presents. Of course, the girls were very spoilt. We then had lunch. It was fantastic. I was just so happy and relieved to be spending Christmas day with my whole family, rather than at RMH in Sydney. Later in the afternoon, we caught up with James’ sister and her family. I think the girls had a great day.

Boxing Day

Our plan was to head back to Sydney with Sarah this time. We spent most of the day packing and were planning on leaving in the afternoon. It took us so long to get organized that we decided to make an early morning dash the following day.

Wednesday, 27th December

We woke the girls early and piled them straight into the car. We foolishly thought that they may just go back to sleep but that wasn’t to be. We headed off just before 6am. Sarah whinged for the first part of the trip and then slept the rest of the way. She gets extremely restless in the car – she just wants to be mobile all the time.

We arrived at about 8.40am and it was straight up to C2N (the outpatients clinic) for a blood test. We briefly spoke with her doctor. Once again, we needed to wait for the results.

It was decided that Olivia’s stem cells would be collected in the afternoon. Firstly, she required a transfusion of packed red cells and platelets. This seemed to indicate to us that she would not begin transplant this week as her blood counts had not recovered as quickly as we’d hoped.

In the afternoon, Olivia was hooked up to an apheresis machine to have her stem cells collected. We had to wait until the following morning to find out how many they had collected. They need 2 million for the transplant.

Thursday, 28th December

My Birthday – My morning began with lots of cuddles with the girls and opening my presents. I was spoilt.

We waited around to hear the results of Olivia’s stem cell collection. They needed to collect more as they only got 1.6 million. Later in the afternoon, they continued with the collection. Olivia was so tired she slept through most of it. I took Sarah to the shops. Apparently, Sarah doesn’t share my passion for shopping. She wasn’t very happy to be carted around in the pram so I spent most of my time carrying her and pushing the pram around. Unfortunately, this cut my little shopping spree very short. On returning, it was James’ turn to mind Sarah while she had an afternoon sleep while I spent some time with Olivia. The collection finished some time after five. We then headed over to our friends, Rosie’s and Garry’s house for dinner. Rosie put on a beautiful birthday dinner with French champagne, chocolate cake and a delicious meal. We had a great night and the girls really enjoyed it too.

Friday, 29th December

We headed back to Canberra today and arrived home by lunch time. James and I decided to go out for dinner and a movie (can’t remember the last time we had done that). It began as a lovely evening. We went to Belluci’s in Dickson and drank a beautiful red wine (just what I needed). We enjoyed the food and then headed off to the movies to watch Casino Royale. We were enjoying the movie but about half way through I began to feel quite ill. I mentioned it to James and he told me he felt the same way. We both sat through the rest of the movie feeling like we wanted to throw up. After the movie, we both agreed that it was almost certainly the calamari we shared at the restaurant that caused us to feel this way. James rang BELLUCI’S but the manager didn’t want to know about it and gave a completely unsatisfactory response. We both then proceeded to throw up in the rest rooms. This continued for the next couple of hours.

The next day James spoke with the manager in person. He didn’t believe that their food could have made us ill within a few hours and accepted no responsibility. Belluci’s was once one of our favourite restaurants but it will be boycotted in future.

The rest of the weekend was uneventful, including New Year’s Eve when we decided to have a quiet one and were actually in bed before midnight – haven’t done that in years!

Olivia had another blood test on New Year’s Day. The results showed that it was looking likely she would begin transplant later in the week.

Tuesday, 2nd January

We headed to Sydney in the afternoon, believing that we would most likely be there for the next couple of months.

Wednesday, 3rd January

Once again, Olivia had to fast for her MRI scan. She was suppose to have it at 12pm, which is a very long time to wait when you’re fasting. Her scan was then delayed until 2pm and by the time she actually went in it was closer to 3. I was unhappy about this – it’s not fair to fast a small child for that long, especially when the delay was caused by a couple of mistakes on their part. Anyway, we would have to wait until the following week for the results. James spoke to Olivia’s oncologist who suggested that Olivia start transplant either next Wednesday, Thursday or Friday. Yet another delay! Apparently, she preferred her blood counts to be a little higher. We opted to start on Wednesday.

Thursday, 4th January

After Sarah’s morning sleep and packing up, we decided to take the girls to Coogee Beach for a while. They loved it. Olivia had fun in the water, however, Sarah wasn’t too keen (it was her first time at the beach). I think the water was a bit too cold for her little toes. She did have fun playing in the sand. We saw a couple of blue bottles along the shore but not really enough to worry about. I pointed them out to Olivia so that she would hopefully avoid them. I took Olivia into the water for a quick paddle (legs only, as we have to be careful not to get her central lines wet). She was absolutely loving it until she let out an almighty scream. Of course, she had been stung by a blue bottle. I quickly picked her up and in a panic, attempted to brush the tentacles off her leg. I called out to James. He raced down with Sarah and brushed the rest of the tentacles off and then whisked her off to the life guards. She was screaming all the way up the beach. They treated the sting with ice. Just to be on the safe side and on the advice of one of the hospital nurses, we took her off to hospital. Olivia had calmed down and everything turned out fine. There’s something about a couple of lemonade icy poles which makes everything seem so much better. She kept telling all the nurses that she had been stung by a ‘neetle bottle’. We don’t know where she got that from but guessed that she associates ‘neetles’ (needles) with pain, therefore, linking them to blue bottles. All she ended up having done was a dressing change. All of this significantly delayed our trip back to Canberra. Sarah did not enjoy the trip home.

Friday, 5th January

The next few days were, again, very busy. I was lucky enough to catch up with a few friends, which was fantastic. They all wished Olivia well for her transplant and spoilt her with a few birthday presents (her birthday is on the 15th). Thank you to everyone who got her a present – she loved all of them!

Having made it back to Canberra, James and I thought it might be nice to throw Olivia a surprise birthday party on Tuesday the 9th, the day before we head back to Sydney. We thought we’d just invite a small group of children to celebrate with her. I pretty much organized the whole thing – I bought everything you need for a party and chosen the cake I was going to make. I have to admit James and I were a little paranoid about having other children around the day before Olivia goes into transplant and because her immune system never completely recovers from previous chemotherapy.

One of my friends has a child with chicken pox and she warned me that there was a huge chicken pox outbreak in Canberra. After some debate, we decided against having the party – we weren’t prepared to risk Olivia’s health at all. I’m sure it would only be a very small risk but a risk nonetheless. Also, Olivia could just as easily catch any other illness. On the other hand, we were disappointed because we know how much Olivia longs to play with other children. It breaks our hearts when we have to tell her that she can’t play with one of her friends until she gets better. Unfortunately, this may continue for some time because her immune system is going to take about 12 months to fully recover from all of her treatments and she can’t begin immunisations against childhood illnesses until she’s four.

Olivia had another blood test on Monday morning. Later that day I spoke with her oncologist about the results. She said that Olivia was not able to begin transplant until Thursday as the ward had already filled their quota for kids starting chemo on that day. Once again, another delay, however, this time I was grateful for the extra day at home and an extra day with Sarah.

Tuesday, 9th January

Sarah was feeling pretty miserable for a good part of the afternoon. She was very clingy and just wanted to be cuddled. I suspected it might have something to do with teething. She soon spiked a bit of a temperature. We kept our eyes on her and she seemed to pick up in the evening.

Since we weren’t going ahead with Olivia’s party, I decided to go ahead and make the birthday cake anyway. It was a heart-shaped ice-cream cake with white chocolate icing and hearts on top. Olivia chose it from one of my books. That evening we had a barbeque at our house with Mum, Dad and Bec. We sang Happy Birthday and had some cake for dessert. I think Olivia really enjoyed it.

Wednesday, 10th January

The girls and I spent a bit of time at Mum’s house over the past couple of days. They love going over to Grandma’s house. Grandma got them a water play table for Christmas and they love spending time playing in there, as well as in the sandpit. However, both girls get a little possessive of their toys and that’s when the fighting begins. I can’t believe the fights start at such an early age. The concept of sharing is an amazingly difficult thing to teach!

I also spent a good part of the day cleaning the house and yet again, packing.

Thursday, 11th January

We decided to leave Sarah with Mum over the next few days. We knew it would be a busy time in the hospital, settling Olivia into transplant. We knew that the doctors and nurses would need to fill us in on the transplant protocol and that we would have a lot of questions. Sarah, Mum, Dad and Bec are planning on making their way up to Sydney on Monday to celebrate Olivia’s birthday. Mum is planning on staying in Sydney for the rest of the week.

I was very upset saying goodbye to Sarah. I realized it wouldn’t be long before I saw her again but I think the prospect of being in Sydney for the next couple of months and knowing that I won’t be seeing her as much really breaks my heart.

We arrived in Sydney sometime after 1pm. We went straight up to the ward. Olivia had to be weighed and measured and then we moved into a temporary room. The nice thing was that it was a single room. Not another kid in sight! It was like five star luxury to us. We were told that a transplant room would not be available for another night or so. Olivia began her conditioning chemotherapy at around 3pm.

The ‘conditioning’ is basically about four or five days of extremely high doses of chemotherapy. The idea of this is for it to kill off all of Olivia’s bone marrow (where blood cells are made), without which, survival is not possible. At 24 hours post chemo, she is given back her stem cells (which were collected at an earlier date) in a syringe. This is what’s known as the transplant. These stem cells circulate around her body until they eventually settle into the marrow (the bony, honeycomb-like structure inside the bones). This is called engraftment and can take a few days. In the meantime, Olivia is likely to get very sick as a result of the chemo.

I felt extremely anxious all day and it didn’t take much for me to start crying. This is such a big step in her treatment protocol. I couldn’t help but think all day about how I wished it was me having to go through all of this and not her. I would give everything I have for her to be cured of this. It is just so painful to watch your baby endure all that she has had to endure. I just hope to God that this all works and we won’t have to watch her suffer anymore.

We did have some good news today. We were told today that it looks as though the neuroblastoma that was in Olivia’s skull bones has gone. We were thrilled. There is still some damage to the scull bone, though this will likely take a bit longer to heal.

The first day of chemo seemed to go by without any problems. I stayed with Olivia on this night.

Friday, 12th January

Mum called me first thing this morning to tell me that Sarah had developed a rash on the back of her neck. I told her to take her to the doctor. I’m certainly not taking any chances with my girls anymore. In the meantime, the rash had spread to her tummy and head and she had a slightly red throat. Mum took her to see the doctor who seemed to think that it was viral and it would be best to keep her away from Olivia for at least a week. Of course, Mum was devastated knowing that she would no longer be able to make it up to Sydney for Olivia’s birthday. It also meant that Dad and Bec couldn’t come up either as they have been in contact with Sarah. I was equally as devastated as it meant that I couldn’t see Sarah or even give her big cuddles while she’s feeling so out of sorts. Olivia, too, was most upset to learn that she wouldn’t be seeing her little sister on her birthday, as well as the rest of the family.

Today was much of the same as yesterday. Olivia has two drugs, Etoposide and Carboplatin, which are combined together and run 24 hours for 4 days. She also has another drug called Melphalan which runs for an hour over 3 days. These doses are incredibly high. So far, Olivia is coping very well. No complaints of nausea or anything else.

I had a big chat with the dietician about the sorts of foods that can and can’t be eaten throughout transplant (about 6 weeks). We also discussed the proposed nutrition for Olivia throughout this period. It was implied that Olivia will almost definitely require a nasal gastric feeding tube for the duration of transplant as she will more than likely lose her appetite and become quite ill. The dietician also discussed other options for feeding if the NG tube was unsuccessful. The plan is to put the tube in before she becomes too sick. I’m sure Olivia won’t be an easy customer which is totally understandable. It’s going to be very upsetting to watch too.

I also had a lengthy discussion with the bone marrow transplant nurse consultant. She filled me in on the dos and don’ts of transplant. Prior to us moving into the transplant room, it is thoroughly cleaned. In fact, the curtains are also washed and replaced. Before entering the room, we must wipe down everything (eg. toys, etc) with a metho spray. This even also includes any balloons she might get for her birthday. Plants or flowers are not permitted. We have to wash our hands thoroughly when entering and exiting the room. We aren’t allowed to wear rings or watches – bacteria can breed under there. Unfortunately, James and I are unable to remove our rings, they’re too tight. I guess we’re stuck with each other now! We were told that was okay. The same rules apply to the nurses, however, if they are unable to take off their rings, they must have them cut off. I have also elected to wipe down the furniture and mop the floor every day. Visitors are not allowed, except to look through the window. Olivia is only allowed to have a total of six different people visit. Children under the age of six are not permitted, although they may make a special exception for Sarah. It is absolutely crucial to maintain a clean environment for Olivia so that she doesn’t come in contact with any bugs that could cause her to become very ill.

The nurse informed us of what to expect over the coming days and weeks. Chemo is due to finish around lunch time on Monday. They call the next 24 hours a ‘rest day’ – yeah, sure! The bone marrow transplant is then due to take place on Tuesday, the 16th. Apparently, the preservative they use when freezing down the stem cells has a strange odour and is breathed out through the patient’s lungs for around 24 hours. It can also make them quite nauseous. We’ve been told to expect Olivia to get very sick, particularly around the time when her blood counts drop dramatically. She could get nausea and vomiting, mouth ulcers which extend down the throat and through the gut in the form of mucositis (very painful), infections, spontaneous bleeding, etc. I’m sure that a few transfusions will be required in this time. This whole situation is very scary. On the one hand, we know that it is an extremely serious procedure that can have any number of complications but on the other hand, Olivia looks so well at the moment and has coped with everything so brilliantly, it’s difficult to imagine her getting very ill. Sometimes, I think James and I lull ourselves into a false sense of security. However, at the same time, we both have a good feeling Olivia is going to come out of transplant just fine.

I did manage to catch up with a few friends today. My friend, Helen, was visiting from Melbourne so I spent some time with her and her son. I later caught up with my friends, Rosie and Wendy, who visited us in hospital. They were allowed in Olivia’s room at that stage as we weren’t in the transplant room. However, Rosie’s son had to stay out. That evening I went out for a lovely dinner with the girls. It was fantastic. We just laughed until it hurt and it was exactly what I needed. James stayed with Olivia.

Saturday, 13th January

Olivia has continued to feel well. Not much happened today. I went out briefly in the morning to organize some balloons for Olivia’s birthday. I then spent the rest of the day with her. I managed to squeeze in a short nap in the afternoon while Olivia slept. I have been feeling exhausted, as has James.

We moved into the transplant room this afternoon. We gave everything a thorough wipe over before entering. The room has a television, microwave, mini-fridge and a bathroom (although the adults are not permitted to use it). I guess this set up exists to minimize the number of times we enter and exit the room.

I am staying with Olivia tonight.

Sunday, 14th January

Not long after Olivia woke up, she complained of not feeling very well. It wasn’t long before she began vomiting. She picked up quite quickly after that and at one stage was dancing beside her bed. Later on, while I was out, James said that she had vomited again. The nurses then gave her some extra anti-nausea medication, Maxolon. I should also point out that Olivia also requires other medications on a daily basis – most of them are prophylaxis medications which means that they are preventative. She takes medications to prevent veni-occlusive disease, fungal infections, chest infections, etc. She will also have to have daily G-CSF to help increase her white cells and neutrophils – this will begin on Tuesday.

I spent a bit of time running around making last minute preparations for Olivia’s birthday tomorrow. I really wanted to try and make it as special as can be.

Olivia and I spent the afternoon making decorations and hanging pink and purple streamers around her room. It looked very festive by the time we’d finished.

Overall, Olivia was quite happy today. James stayed with her overnight.