Tuesday, 15 January 2013

Chatting with Dr Goldman

Jayden vomited again this morning after his breakfast. My anxiety levels are now rising again and I'm trying to believe all is ok.
My very good friend suggested yesterday that it may be due to when he's done too much activity or had a lot of stimulation followed by or, not enough sleep. I thought that was a very plausible reason yesterday as he did go to bed late the night before and was up very early. But last night we got him to bed at a reasonable time even though he didn't want to go to bed without Luke. He even slept in till 6:30 this morning so that seemed like a good sleep for him. I'm trying not to panic and keep reminding myself he only had a scan a week ago but it's very difficult to relax.
Another lady commented that her son with ATRT was the same and still is and they have discovered its a syndrome known as cyclic vomiting syndrome. I'm hoping that's what Jayden has as well. But without any sure diagnosis I'm just a basket full of anxiety and worry.

We spoke to Dr Goldman this morning via Skype, it was so good to see his face and hear his voice. I truly love this doctor, he really is the best.

We talked about a lot of things including new approaches with relapse in ATRT as I wanted to know what was out there and if there's any advances in that area.
He was so lovely to speak to and fabulous at explaining things in terms that danny and I can understand.
Before we even got into talking about the medical stuff he told us he thought we had made all the right decisions concerning our son and how happy he was Jayden's MRI was clear. Really nice to hear those words said : "we made the right decisions".


He also said , sadly, that we were by no means in a place that we can breathe easy yet or say he is cured at this time but he was very happy about how Jayden is so far. He reminded us that this is the most volatile time as these nasty tumours tend to come back early but that everyday we get with Jayden is a good day and a day more in the right direction.
I told him how Nick had told us that should Jayden relapse he would not treat Jayden to cure but instead to only manage the disease. Dr Stew said that he didn't disagree with Nick but he would never take someones hope away. He would treat Jayden in the hope of curing him always. He is always so positive and made us feel really good by the time we got off Skype.
I mentioned to him also about jaydens vomiting and he told me if I was worried to just get another scan, to go with my gut instinct always. That kind of scared me a bit because my gut instinct is always in panic mode and even more so now.

I'm so grateful to have met Dr Goldman and have him in our lives. He is truly a decent human being and I just wanted to reach into the computer and give him the biggest cuddle today before we said goodbye. Just love him.

Its late in the evening now and Jayden's asleep, Danny's getting ready for bed and our two other kids are staying the night over at Nannas house. I miss them so much when they're away but I know they are getting spoilt and are very happy.
the house feels very empty without them though :( . No little voices, or sounds of playing. don't like that. Would much rather hear my kids playing, arguing even than the silence of the house without them. But then, its only one night so I'm sure I will survive.

We have another appointment with the naturopath tomorrow to let us know what our next step is.they have organised for a sample of Jayden's blood to be sent to Switzerland for genostics testing. It's individualised diagnosis and therapies based on molecular medicine- quoted from the handout they gave us. Wasn't cheap. So hoping it will help. It's difficult to know what's best in the way of alternative treatments and when your in the situation that we are in and many others, you become vulnerable targets for so called " new therapies". We do think this is worth it though, well, we certainly hope so and how can you not try everything, within reason of course.

Hopefully tomorrows visit will shed some more light on what we do from here.

As for Jayden he is in Fabulous spirits but missed his siblings terribly today, especially Luke. As the age gap between Luke and Layla appears to be getting bigger Luke has turned to Jayden for companionship a lot. They play and argue, and play and laugh together all day. Luke looks out for him like a big brother knows how to do best and Jayden is just besotted with him. Everything Luke does Jayden wants to do, so toilet training hasn't been too difficult this time round. Except he's taken to wearing no clothes all the time now, great for washing days but not so great when he wants to go to the park. We end up having to go to great lengths to get him to put clothes on.
That's the one thing we can't get him to copy off Luke, wearing clothes. But even Luke doesn't get around in much except shorts. Admittedly the weather is hot and I'm sure we would all be in that attire if it was acceptable to do so.

It's time for me to sleep. Snuggle up to my little man and be so grateful he's here. All day I hug him that little bit tighter and always for as long as he will let me and tell him all the time how much I love him. All my kids. When I was growing up I always remember that not a day went by without my dad telling me he loved me, he still does, every time I see him and what a nice thing to know. I want my kids to grow up knowing how much They are loved too.
With Jayden I know I hold longer, more often and smother him with cuddles more often , for I feel like I need to make up for time I may lose in the future. Every time I hold him I soak up that moment, try to put it in my memory in a box kept for special moments that I never want to forget. A place that I will be able to call upon one day and recall how beautiful that moment was .
I never want to forget every second I have with my kids, every moment, every cuddle and every word. I hope that special memory box gets to fit a lifetime of special moments with all my kids.


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2 comments:

  1. We also share a love for Dr Stew! I have a friend (not brain tumor related) whose daughter has cyclic vomiting, when she has an episode she throws up constantly for days where she ends up in the hospital. I hope you get some answers soon.
    Cyndi and Owen

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  2. MY SON THROWS UP RANDOMLY AND IT WORRIED ME TOO, I TOOK HIM TO THE DR AND THEY SAID BETWEEN THE AGES OF 2-3 KIDS DO THAT. MY SON MICHAEL SEEMS TO DO IT IF HE EATS TO MUCH OR IF HE DRINKS ACIDITY STUFF LIKE APPLE JUICE IT HITS HIS STOMACH AND OUT IT COMES. I WILL PRAY THAT IT IS NOTHING. XOXO

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