Wednesday, February 19, 2014

First hair cut

Today my Little miracle had his first hair cut ever. This should have been a great moment for us, something to celebrate, since he's hair finally had grown so much after the chemo that he needed to cut it in the first Place, and instead I want to cry every time I feel his hair.

He is as handsome as ever, but The hairdresser cut off way too much of his hair, and since I can't see, I obviously did not know this until she was done already. I hate when people do this to me. What's the Point of asking me how I want his hair cut if you're not going to listen anyway?

Joshua was so brave though. He sat on my lap and watched while his dad got his haircut, and when he was done he just walked straight up there and asked to be put in the chair so that he could have his turn. I can tell there's been no mean uncles around to scare this Little one; Alex cried every time we cut his hair until he was almost 6. We use to jokingly say that I should have named him Samson, since he seemed to be so convinced that cutting his hair would be the end of him.

Perhaps it would have been better if Joshua had cried, so that I would have had to stand over there and hold him. As it was, hee was fine with his dad standing next to him, and since B didn't want a say in it, I had explained Everything in Swedeish, which meant that he didn't have any idea about anything.

She cut off too much of Alex's hair too, but he didn't say anything until we had already left, which meant that she got the chance to do the same thing to me as well. she took off probably 15 cm of my hair, even though I specifically told her that I wanted to keep it long. Sometimes I Think that my son is too well brought up for his own good, but then again, so am I, it's not like I told her what I thought of her either, I'm just not going back there again...ever! It's a shame really, she's Always done well Before.

Thursday, February 13, 2014

Short lived joy as usual

Yep...the tumor is back...laser again as usual. The Dr wants us to come back in 3 weeks to make sure that they're not missing anything.

It got late this time, so we got an extra night at the hotel out of it, and Joshua was happy to be able to go and have breakfast there for once. I Think pancakes is his new favorite. I'll have to see if I can find a recipe for vegan ones to make at home.

We had to wait quite a while Before Joshua got int for his EUA, and we had to wait even longer Before we got back to our room afterwards. We were sharing a room this time, and the other family apparently had a relative back at the hotel with the stomach flu, so we had to wait for them to get out of there Before we could leave the recovery ward. They were sanatizing as best they could, but since we had already spent quite a while talking to the mom Before we Went up to the surgery floor, and their cute, Little boy even had come over to give me some of his toys, it's doubtful that it will protect us. We'll just have to wait and see.

I'm tired of cancer! And I'm tired of germs!

Monday, February 10, 2014

A tumor free start to the new year

I've been away from here for a while, which probably is a good thing, since I usually write when I'm worried or sad, although the other explanation is just that Life is incredibly busy studying full time, and at the same time entertaining a toddler all day. His dad helps out a lot as well of course, but between the two of us, it's about all we have time for.

Our visit to the Eye hospital in January Went smoothly, and my Little superhero didn't need any treatment. It was surprising, but we'll take it! We're grateful for the positive surprises on this journey.

It's already time to pack for Another trip to the hospital. Time Always seems to pass so quickly between appointments, and at the same time Joshua seems to have grown so much since last month. He's talking away in 2 languages, laughs a lot, and shows signs of a good sense of humor already. We're enjoying every moment, and are grateful for the chance to spend this much time with him.

We've discussed trying to find a good preschool for him soon, but can't quite bring ourselves to give him over to the care of strangers yet. We do that enough when he's in the hospital, and we can't really trust that we're done with treatments anyway. There'd be no Point in getting him enrolled somewhere, only to have to keep him home again because of hospital stays, and fear of germs.

To begin with I Think we'll have to have a few more cancer free examinations under anesthesia. Just one really isn't that reassuring, although it's definetly improvement. Like I said, we'll take it...

Thursday, December 19, 2013

Enjoying the holidays, no matter what

In the middle of Advent celebrations, Christmas preparations, some of the worst storms that we have seen in decades, leg cast removals, course completions, an intensified workout schedule, and just the Daily Life of keeping a 2-and-a-half-year-old who can't walk entertained all day, there hasn't been much time for writing.

And just like that, Another examination under anesthesia has come and gone.

Unfortunately our Christmas wish didn't get fulfilled this time. Our Little superhero needed treatment for the same old stubbern tumor that has been causing problems since January this year, and they're discussing doing anothre round of intra-arterial chemotherapy.

It's not a sure thing yet, but if he needs treatment when we go back in January, that's most likely what's going to happen. Unless of course they can somehow come up with a better alternative, though I'm not sure what that "alternative" could be...

I'm not happy about it of course, and I feel again that perhaps enucleation would be a better option, so that he can finally get the chance to be a "normal" Child, who doesn't automatically have to assume that we're on our way to the hospital every time we leave the house.

But removing an Eye that scored 80 percent on the vision test doesn't seem entirely right either...especially not since there are no guarantees for his other Eye...

But there is reason to live in the now, and to forget about the bad for a while. My Brothers are visiting for the first time in ages. I don't even know when I saw all three of them at the same time last, but it has been a very long time. It's a sad event that brings them here, but as usual, there is a small gain to be found in every great loss, and I embrace the fact that they're here, no matter the reason.

Tomorrow we're going to my sister's house to see Joshua's and Alex's new Little cousin for the first time. It is way over do, she is 4 months old already...

As of right now, we'll concentrate on enjoying the holidays, and on giving Joshua and his brother a wonderful Christmas.

There will be more than enough time to worry, and make impossible choices later...

Tuesday, November 26, 2013

Flu vaccines and allergy tests

The first Flu vaccines and allergy tests are complete, and there's just 2 more weeks to go Before our Little Prince can get rid of the leg cast! Actually, Joshua will need one more shot in a few weeks to make sure that he's fully protected, but we're hoping that the flu will take the hint and not make any attempts in the meantime. Alex and B will have to go get their vaccines as well, but I've got mine taken care of at least. There's not much Point in Joshua being immune if the rest of us come down with the flu, as we won't be able to take him to his examinations should that be the case.
As for the allergy tests, they had misplaced the referral yesterday, but after 30 minutes or so they finally got it figured out so that we could get the tests taken care of.
Joshua was a champ as Always, and was giving the guy who took the tests instructions as he Went: "You need that to prick my toe", "you need to put a lid on the tube", "now I need a band-aid." and so on and so forth. He knows his stuff buy now...
We'll get the results of the tests on the 9th of December, take the second flu shot on the 10th, and then his cast should come off somewhere around that time as well. On the 17th we'll go back to the Eye hospital for Another examination.
December will be a somewhat busy month...but hopefully we'll be able to wrap it all up with a cancer-free Christmas.