MRI

Amelia had her first check up MRI at Randwick on Tuesday 31st August. She needed a general anaesthetic, but the whole procedure went very well and amazingly, it was quite a fun day for Amelia and me. We didn't have a pre-medication because of problems in the past, but the gas wasn't too bad without it.

We had originally been scheduled for a CT scan, but on advice from Amelia's grandfather, John, we had it changed to an MRI (we have since discovered that they don't use CT scans at all at Westmead).

The great news is that the scan was all clear. We were expecting good news, but we were greatly relieved to hear it anyway. We know that Amelia's prognosis is very good, but there is still a small chance that the cancer will reappear so this first follow up scan was a bit nerve racking.

IVIG and colds

Amelia got her second infusion of IVIG on Thursday 12th. Medically it went very well, it was done over 6 hours (as opposed to 12 hours for the first one) and there were no complications. Organisationally it went quite badly, Amelia and I arrived at 9:30am and we didn't get the infusion started until 5:00pm which meant that we finally got home at 1:00am! Amelia didn't sleep at all, but fortunately she wasn't irritable and so it wasn't too bad. A few weeks earlier this sort of a day would have produced multiple screaming tantrums.

We were in the neurology ward again, and there was the usual array of depressing cases. For the first time I noticed that Amelia got upset by seeing one of the other patients. There was a boy with a tracheo(sp?) in his neck that made metalic hissing sounds when he tried to talk and this really freaked Amelia out. My Aunt, who we haven't seen for a while has a permanent tracheo, so we will have to prepare her before their next meeting. Being is a shared ward of six beds, we overheard a 14 year old girl next to us tell a social worker her life story, which was interesting and luckily she was only in for a broken bone. I hope I never meet her again, I would know too much about her to be comfortable!

Amelia, Emma and I all got terrible colds in the days after the IVIG. Initially, we didn't think Amelia got it, because she didn't show any typical cold symptoms, but her OMS symptoms (irritability and sleeping problems) flared up quite badly, and we think it was probably the virus doing it. A relapse due to a virus is quite typical of OMS. Hopefully when the virus goes, the OMS symptoms will too. This is one of the worse colds I have had for years, I have had two days in bed and after seven days I still feel fatigued. Such bad timing!

Westmead

The last week was a rollercoaster ride for the OMS. The first three days after the IVIG were amazing. Amelia was totally back to normal. No irritability, tantrums or slow speech and she was a happy, normal four year old! We had forgotten what she was like because she hadn't been like that for about 8 months, she was singing and dancing around the house and interacting with people gregariously. Unfortunately, this only lasted 3 days. On Friday she reverted back to her irritable, withdrawn state. This may have been due to reducing her prednisolone from 40 to 35mg/day on Thursday. We had forgotten what a happy child Amelia used to be and having her back for only 3 days just reminded us how much we have all lost to OMS.

The last couple of days have been relatively good though, and we are hoping that things are settling down after the 5mg/day prednisolone dosage change. Today was probably the best day she has had other than the few days after the IVIG.

Today we went to Westmead hospital and saw our new neurologist, Dr. Jayne Antony. We were extremely impressed with her and are very happy to be seeing her (in a strange coincidence, we established that her father was born in the city where Dr. Pranzatelli works). She presented us with a treatment plan which involves IVIG every month for the next six months with very gradual reductions in the steroids. This is the treatment we have wanted for a while, so we feel a big sense of relief that we don't have to chase after it anymore.

We got the speech pathologist's report this week and the summary was:

Milly presents with ataxic dysarthria that is interfering with her speech intelligibility. Reports suggest that she has made significant gains since her treatment has commenced, but the situation is not yet stable. Her language skills were assessed as being average for her age and do not appear to have been affected by her condition.

So the good news is that her language skills have not been affected.

Meanwhile Amelia is slowly getting back to preschool. Kara left her there for over an hour today and it went very well. Unless she has another relapse, we think she will be back into a normal Montessori preschool routine in a week or two. Wow.

Check out the new Wikipedia page for OMS that we have written. Please change and update it as required!