Little Feet - Long Walk

Hello and welcome to my blog. This blog is the journey of our family after Millie, our 2 year old daughter, was discovered to have a large brain tumour. The tumour was caused by an aggresive cancer named anaplastic ependymoma. Please feel free to read as much as you want and spread the word. If you want to know more details about the diagnosis then it is best to start at "The beginning ... " which was written in May 2011. But you are welcome to follow us from today. I have created pages that summarise the events leading up to the start of going to Florida for proton radiotherapy at the beginning of June 2011, about 8 weeks after diagnosis.

Saturday 18 June 2011

Day Eleven - Second day of proton

The second day of proton. Millie was better today, probably because my husband and I were calmer than yesterday. We now know more about what we are doing and we have had the scary chat with Dr Danny. Millie woke up at the normal time and again I slowly got her and myself dressed. Because we were scheduled a bit later today I was able to get the meds and some water into her before her 3 hour nil-by-mouth period started. I mentioned again that we would be having breakfast after we had been to the hospital and she seemed to take it in her stride. She was just as bouncy and toddler-like as normal when trying to get her dressed. It can take an age sometimes, which is fine if we are trying to waste time but can be a real pain when we want to go out. She loves to get her own nappies from the drawer in the bathroom, she loves to put her dirty one in the bathroom. However, she is very easily distracted! At the moment, the bathroom has become the "shed" after we have been reading a Thomas the Tank Engine story about a monster in the shed. The monster is actually a hedgehog (don't ask!) and she loves pretending that a hair brush is the hedgehog/monster. Toddler imagination in full flow. It is really nice to witness it, especially considering the circumstances.

We got the chance to skype home briefly before we left. It was a great distraction for the last 20 minutes. Mitch phoned during the call to say he was ready to take us and I said it was time for us to go, Millie then started saying the same thing "Time to go!". She has really started copying everything we say and seems to hear everything and understand everything. I think we may be going through every toddler phase possible at the moment - I suspect she is in catch-up. We have the "Why" phase as well. However, she is asking real questions. And clever ones. Yesterday she asked why it was getting dark! The other day I had a dozen why questions before I could get her to breakfast! She may just be getting to the level where she can understand a bit more about what is going on, which might make it easier when trying to explain to her why we are here and not at home with her sister.

By the time we got to UFPTI the red gantry was running 20 minutes behind so I was expecting to have to wait a lot longer than yesterday. However, Kendra called us in at the expected time. This time I had worked out where the toys were and grabbed the toy that Jacob had been playing with yesterday. Millie had seemed interested in it when she saw Jacob with it. It kept her distracted while her obs were taken although she still didn't like Kendra giving her wiggly a drink (attaching the saline drip) although did accept it a bit more when I said it was a straw for her wiggly! We were quickly and efficiently moved into the proton room. I carried Millie again and this time pointed out the red walls. Shevan thinks it is a space ship and gets excited everytime so I tried it out on Millie. Telling her that is what Shevan thinks and asking her if she wanted a go. I then realised there was music coming from inside the room and used that to dance to with her. We got all the way in without her realising and positioned ourselves in the appropriate corner so they can access the drip. As I danced the anaesthetic was given and she coughed and was out. It happened so quickly and smoothly that it was only her coughing that let me know she was going under. The soothing effect was noted by the anaethetists so I think I might be embarrasing myself each time now!

We went and got some food and chatted to Jacob's parents (he went in as we left Millie). And about an hour and twenty minutes later Kendra called to say we could go to recovery. Millie was sleeping soundly. Kendra had flushed the lines and put Millie's top back on already - bless her. She slept for about 20 more minutes and woke up when Jacob cried! She was slightly happier this time, especially once Kendra had taken off the heart rate monitor from her toe and I had put her sock back on. Making sure she had her top on was definately a good move. She had all the blueberries and lots to drink. Before we left she had to be checked over by Dr Danny's assistant doctor, Curtis. She fought him! Then Dr Danny swung by (he looks like he never sits down for longer than 5 minutes at a time) and gave us the all clear to leave. We were back by about half two - same time as yesterday despite the later start.

As soon as we got back to RMH I fed Millie. She had a large plateful of last nights macaroni cheese followed by a yogurt. She then wanted to go and play with Daddy so I tidied up. The wobbliness from the anaesthetic seemed to wear off quicker this time. She played all afternoon! She is getting to know Jacob and Shevan, and is even prepared to share some of the toys. She and Shevan play with the train track together. She has the red engine and Shevan has the blue engine and they both push their respective engines around the track which is set on a table at just the right height for them. They have been known to play this game for quite a while. Mind you, Millie has played it by herself for many, many minutes if not hours! That and 'shopping' in the play area right next to our room. And 'tea parties'!

It started raining just before tea. Absolutely 'down pouring' as a local said! Tea was good - large roast chicken pieces. Millie ate well again. And afterwards decided she wanted to play with Daddy again! So I had to do the cleaning again. Nice to have the change actually! It has stopped raining and was already drying out so my husband went and got the new trike to use outside. She sat on it for a bit then decided she would much rather play with the little ball. She loves chasing it about the play area. The outdoor play area is not completely level so the ball keeps going away from her. And sometimes the wind can blow it even further and quicker. It is quite funny watching her chase the ball. All good practice for her balance and coordination! When she wasn't chasing the ball she was playing with Jacob's Dad who kept throwing and rolling the ball for her. It was lovely to see her happy and interacting with other people, not just kids. She must be settling in. Good! Makes things a bit easier for us.

It's the weekend now and we haven't really worked out what we are going to do. It probably depends on the smoke and heat. I think we also need to take it a bit easy still. But also need to get out for a bit. Maybe we'll check out the market under the interstate(!) that is across the river. And maybe the beach or the zoo, or just another supermarket. Who knows! No Proton for 2 days so we can have our brunch tomorrow and on Sunday (Father's Day)!

Two down - 31 to go!

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