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We headed to Sydney on Wed 28th September for Tyler’s 6 month checkup which now consists of only Ultrasound & clinic with his doc. Although it’s GREAT for Tyler that this is his only test, it always leaves us wondering - is it enough. At the end of the day though, he is no longer being subjected to all the radiation from the isotope injection with the MIBG & added radiation exposure from the CT scans & for his future health sake, this is so important. We left Hayden with mum & dad to help reduce the stress levels too. He was not the best behaved last time so it was much easier to leave him at home.


We got the usual ‘sickening’ feeling as we drove out our driveway but I think we have somehow learnt to ‘suppress’ the anxiety a little. In the past Terry & I would be so ‘on edge’ for that trip that we could easily hate each other by the time we got to Sydney!! Just all the ‘what ifs’, ‘maybes’, etc that would consume our thoughts all the way. Also the fact that when Tyler used to have the MIBG scans & the CT there was A LOT of ‘time wasting’ at the hospital. Over time we have come to ‘resent’ the amount of time we have to spend sitting around the hospital - waiting. It’s like we have nothing better to do with our time??!! Many will relate to this!


Anyway, I guess now that Tyler only has the ultrasound check - although (as I said) we sometimes wonder if it’s enough, there doesn’t seem to be as much stress as there used to be - or maybe we’re just learning to deal with it better?? it helps that an ultrasound is less invasive & safer for him. We still go a little crazy watching the screen & watching them measure the lesions that we know are still there & wondering . . . are they bigger . . . is it a new one??? As much as we try, there is NO way to interpret those screens, sometimes it’s easier to just look away!!


Before I continue, I need to mention the incredibly beautiful rainbow that we saw on the way up to Sydney. It was so bright & so strong that we had to pull over & take some photos & just ‘enjoy it’. I’ve never really been one for ‘signs’ but the first thing that came to my mind was “look Tez, it’s almost like it’s Nan is shining down & telling us everything will be ok!!” . . . there may have been some other loved ones with her too.


Well the ultrasound went smoothly on the 30th & we were very relieved when they told us that they didn’t need more pics. This is only the second time we’ve monitored by ultrasound only & the first time they made us sit & wait while they looked them over & then told us they had to ‘check’ a few things & ‘compare’. This was a little stressful to say the least - not to mention I also had a very ‘misbehaving’ Hayden to deal with too!! Thankfully, they turned out fine. 


After the ultrasound we managed to fit some bloods in (I had to chase up a form) as we wanted to compare from the last ones we got done at home that our GP was a bit concerned about a couple of months back. Then there was the waiting . . . . waiting . . . . waiting . . . to see our oncologist in clinic.


In between all this waiting, we ran into 2 families we know from over the years . One was our little NB friend Millie who was my 1st introduction to childhood cancer back in Sept 2006. She was approx 18 months old at the time & was was being pushed around in a pram by her mum, hooked up to a pole with tubes everywhere. She had no hair, was pale with dark circles under her eyes & she just looked so incredibly sick. My 1st thought was ‘oh my god, that precious baby, she’s SO sick’. I was SO in denial back then as we hadn’t been given the ‘confirmed’ diagnosis that I also remember thinking ‘we shouldn’t be here, Tyler is fine. These poor kids are SO sick & here is Tyler running around the place laughing, it’s not fair to them’. I later, & after Tyler being officially diagnosed with Neuroblastoma Stage 4, found out that Millie also had Neuroblastoma Stage 4. She was my ‘glimpse’ of what was to come for Tyler. I became quite close to her parents while we went through treatment as they were those few steps ahead. It was FANTASTIC to see Millie looking SO good now. 


The other family are from our region & are having a big battle with their precious boy. He has a different cancer called ‘Wilms Tumour’ which I believe mainly affects the kidney area. I don’t know too much about Wilms but I believe he has already lost a kidney, was then diagnosed with autism, has since relapsed with cancer & is back & forth to Sydney for treatment. His parents have no idea what lies ahead for their son but are remaining hopeful that the Drs will somehow find a way to get it under control. Very sad story & so hard for this little boy to understand what’s going on - I think he’s 5. Thinking of them often & HOPING for good news for them xxx


We finally got to see our Dr at clinic & he seemed very happy with Tyler. He’s growing well, looking well & is full of energy. The bloods came back fine & the ultrasound showed that the lesions have remained the same - 4 in the liver & I’m sure he mentioned 1 in the adrenal gland (primary tumour site) the area that has caused SO MUCH stress & confusion with previous scans which were believed to be relapse etc. Anyway, we are aware of them & they haven’t changed & that’s the most important thing & great news.


Next check in approx 6 months & we’ll add to that another hearing test, echo (need to keep checking his heart for potential post treatment problems. His heart was under A LOT of strain during transplant). I think that’s about it from that trip. After catching up with Kerrie & checking out the new house they’re building (which looks pretty cool) we headed home.


Friday, Terry ended up staying home with us. Fridays were usually the day that we got the call with the results. Even though the trips aren’t as stressful as in the past, they still take their toll & it seems to be a day that we always value our family time together. We made a very last minute decision to take the boys to Batemans Bay for the afternoon to do some fishing. It’s only 1 & 1/2 hours from home & I really don’t know why we don’t do it more often. We only spent about 3 hours there & there was only 1 (undersize) flathead caught but as you’ll see from the pics in ‘photos’, the boys had a wonderful time, we all did. I sat back & read a book (which I rarely do) while the boys had fun running around & doing some fishing. It was such a beautiful day.


One last piece of info . . . I have recently started working at Osh Kosh DFO (kids clothing). Absolutley LOVE it. Huge 50% sale at the moment so if in the need for some gorgeous & great quality kids wear then head to your nearest DFO store. I came up with an idea now that I’m working there but will wait till I’m known a bit more in the company before I try to suggest anything. Will add more about that when the time is right . . . lets just say . . . kids wear . . . childhood cancer . . . I’m hoping to find a way that one may be able to help the other or help spread awareness about the other. I’m new there so I really need to wait awhile though.


Tyler went on his 3rd Camp Quality Camp from 5th - 8th Oct with his companion & our friend Anne. They went to Berry & he had such a good time. Hayden wasn’t very happy about being left behind & the whole time Ty was away we kept getting ‘where Tyler?’, ‘buh’ (bus). We really enjoyed having the one on one time with Haydo but it was so cute that he missed his big brother so much. When we went to pick up Anne & Tyler on Friday he ran up & jumped on Tyler & gave him the biggest hug. Pity I didn’t think to get it on video, was a very special moment. In 2 years (when Haydo’s 4), he will get to go on camp too!! 


Love & thoughts to ALL families struggling with Childhood Cancer. No matter what stage of the journey you are at, there are ALWAYS difficult times - some much more difficult than others. You are all part of my extended family & think of you often. There are far too many names to mention but I normally give an update on Olivia Lambert. They’ve had a nice 2 week break & are getting ready for round 2. Hoping that Oli gets through it a lot easier this time round. I also need to mention a special boy Max Nunn. Max is 7 & is dying of tumours that are taking over his brain. His parents know of a drug that will help him but are being denied access to it by the FDA (US Food & Drug Administration). Such a brave, brave boy. Sending love & hope to his family. 

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Comments:

Lb128f
Nov. 21, 2010 at 3:45 AM

Thanks for the update and YAY on the results!!! Very good news, indeed!! So glad Tyler's doing well!

Congrats on your job! I hope your idea is well received! Awareness is so important. I think anything you can do will help!

I will be saying a prayer for Tyler and for all the other children who are dealing with CC. I do believe Max received his meds! If you are referring to the GDC-0449 the FDA finally approved it in late October!

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