We were all set to enjoy a week off. Chemo was finished for a little while and we had a two week break before surgery. This last week was going to be our unwind, regroup and catch up week. As you’ve probably guess, it didn’t pan out that way.
We ended up having 12 health appointments for our family this week. Yes 12. 7 for Ethan and 5 for the rest of us. At least some of them were grouped together. Both Ethan and I had an osteo appointment on Monday. Our wonderful osteo was impressed with Ethan’s progress and said he didn’t need to have another session before surgery like she thought he would (cancelling appointments is great).
I received a call from the hospital on Monday afternoon asking if I could bring Ethan in for a MRI brain scan. The MRI waiting list is a mile long, however as an oncology patient he would be squeezed in ASAP as they won’t move forward with treatment until they know the cause of Ethan’s eye problems. They want to exclude the possibility of brain tumours. I told them that Ethan could do it without the anesthetic (most 5 year old children don’t). The lady was happy to hear that and said that would make it a lot easier. So I was put on stand by for when a spot would be available and told to be ready just to come.
As I was leaving an appointment on Tuesday morning I received a call asking if I could come in within the hour for a practice run at the MRI. He had to pass a practice run in order to do the MRI without the anesthetic. They don’t have time for you to fail on the day. So Ethan, Vienna, Ella and I raced to the hospital. I put Vienna and Ella into the child minding facility there. Then we wen to a room where they have an old MRI machine for kids to practice in. A play therapist sat down with us at a table and went through a folder with pictures of what would happen etc. There was a wooden model of the machine which Ethan put a doll on to practice with. Then he got to have his turn. Once he was laying still the lady put foam bricks around his head to keep it from moving. He was given some head phones to wear. Then a big plastic thing was put above his face. In this there was a slot for a mirror. Behind the machine they had an upside down plasma screen. They played a movie which Ethan could watch through the mirrors and listen to through the head phones. So Ethan had to lay still for half an hour in order to pass. Without the movie that would be a big ask but he was very good. He unconsciously moved his mouth a lot so I had to keep telling him to keep it still. While he was watching the movie a CD was playing with the loud noises the MRI machine would make on the day. We were told we had a spot for 11:30 am the following day. Ethan passed the test and we were on our way. I went into the clinic and managed to rearrange our Thursday blood tests and oncologist appointment to Wednesday.
Wednesday morning I worked so hard to get us to the hospital right on 8:30 am for our meeting with the head of the Eye Clinic. We waited and waited and then waited some more. At 10 am the same Doctor who saw Ethan last week tested Ethan’s eyes again. She told us that Dr Hing hadn’t arrived at work yet. How lovely. So she did the same tests she did last week and said that she would talk to Dr Hing about Ethan’s case as soon as he arrived. She felt it necessary to proceed with the MRI today and that she would phone me after speaking to Dr Hing.
We then went to oncology and got in line for his blood to be taken and sent off for testing. Dr Hing arrived at work just after 11 am and I got a phone call saying he agreed with everything the other Dr had told me and to go back for another eye test on the 5th of February. February? As in over two months away? Yes we need to wait that long to see if his vision improves itself. If it doesn’t he will then need patch therapy and glasses. Maybe I should bubble wrap him in the mean time to try and prevent more bruises! He actually doesn’t complain about it at all. He just squints and closes and eye and thinks nothing of it.
We managed to get our blood taken just in time to make it round to the MRI for our 11:30 am appointment. We were in the machine by 1 pm (Ethan and I had a good laugh at Ellen’s blindfolded musical chairs which was on in the waiting room). The updated MRI machine was like comparing a brand new Porsche to an old rusted bomb. Ethan really felt like he was climbing into a space machine They put blue lights on in the room so everything glowed blue. It was very cool. Ethan was BRILLIANT. He lays completely still for 55 mins while they took lots of images of his brain. They took them all twice – halfway through they put a contrast into him through his central line so that half the images had contrast lighting up the nerves inside his head. I sat on a chair holding his foot the whole time. I was very impressed with Ethan, as were all the staff.
Thankfully when we got back to oncology the Doctor said they would see us straight away. Our oncologist was away again so we saw another Doctor we’ve never met before who said everything was looking fine. We just made it back to school in time to get Blaise home and off to basketball.
I can’t remember what we did on Thursday but we didn’t have to have any appointments! YAY!
I thought I would catch up on a whole heap of things on Friday but Ethan wanted to go to school for an hour in the morning but wanted me with him. Vienna happily did colouring in in the classroom and I sharpened pencils etc. Then Ethan wanted to watch his class have their swimming lesson down at the local pool (our school has a 2 week swimming program going on at the moment). So we sat in the cold wind watching the young kids swim for 40 mins. As they were leaving Blaises’s class arrived so we ended up watching Blaise too, which thrilled him. We got to go home for an hour and then we picked Blaise up and the 4 of us all had a GP appointment that afternoon. Ethan had to go through a health plan. Vienna and Blaise had their tummies checked and got a referral for an ultra sound (as some Wilm’s Tumours are genetic Blaise and Vienna need to be checked to eliminate that possibility) and I got some blood test results from an earlier appointment. All well except for a high liver function reading. I assured my Doctor I’m not an alcoholic and maybe it’s from a bit of excess weight I’ve picked up from lounging around in waiting rooms these past few months. So I have 3 months to stabilise and then retest to make sure that’s ok. I’m not worried and neither is the Doctor.
Our oncologist phoned to tell us that the brain scan was all clear, Ethan does not have any brain tumours. The eye problems are definitely a result of toxicity from the chemotherapy. He is meant to be on the same drug post surgery so he will investigate an alternative protocol from the Americans (we are part of an American Wilm’s Tumour Study Group). We weren’t worried about brain tumours but it is still nice to hear that Ethan doesn’t have one.
So that was our week! We did manage to have fun around our appointments. We read lots of books, played lots of chess (the boys current game of choice) and had a play date with the beautiful Barnett boys. Life is good. Despite many appointments we feel we are winning the battle. Some weeks we are in the trenches more than others but we are always moving forward.
Now our weekend is a different story all together. I WILL write about it tomorrow. I promise. We had a GREAT time at our first Camp Quality Camp. Stay tuned for that one!
Maree halls says
Jerusha
It’s been such a pleasure to read your blog. I enjoy it do much. I feel even though we aren’t there with you we are. If you know what I mean.
Our love, faith and happiness are with you always
We love you and your family sooo much.
Chin up. You know we’re here whenever for whatever.
Merry Christmas beautiful girl to you and your family.
Demi says
Ethan’s such a strong little guy!! He looks like he’s put some weight on like you said so that’s good. How great are you making all these appointments.