We have just gotten back from our trip to Stockholm. The train was late, and it would have been a long trip even without the delay, not to mention that little Peeper decided that 5 AM was a good time to be nursed back to sleep, except we had to be at the hospital at 7:15, so he wasn't allowed to neither eat nor drink; try to explain that one to a hungry 14-month-old...
We left Stockholm at 4 PM, and got home at 10:30, so this is just a quick update for those of you who knew that we had an appointment to check our little miracle for new signs of retinoblastoma today.
It is with a heavy heart that I sit here an write that this last EUA didn't turn out the way we had hoped for.
Unfortunately, one of the tumors in our little guys right eye is now active again, and requires laser therapy. We're already scheduled to come back on the 29th this month, and it looks like we will be going to Stockholm every other week for treatment for a while.
We knew that this could happen of course, but it's difficult to deal with just the same. We are afraid that he'll lose his vision, and that the cancer will spread. those fears are always there, but they are of course very close to the surfoce now that the cancer has come back. We were so hoping that those terrible months of chemo would be enough to get rid of it all.
We're glad that it seems like laser will be enough, as that's of course a lot easier on him than chemotherapy, and it seems like it would be better that it's one of the old tumors that is active again, than if new ones were forming, but that may just be that I'm grasping at straws to find a bit of light in the darkness.
But at the end of the day that's all I have...Straws, that do nothing to change the fact that no matter what I do, I can't keep him safe.
It's been a long day...A very long, very sad day.
16 comments:
((HUGS)) Keeping all of you in my thoughts and prayers.
Oh Helene. I am so very sorry. I have been reading along and I'm just so sad to read this. No matter how likely the outcome or how prepared you think you are, bad news is always a horrible shock.
I hope that the lasers will be enough and I'm glad for the straws. Sometimes they are all with have and we just have to cling on to them.
This post absolutely broke my heart. I am so sorry to hear your sad news. I pray that this can be taken of quickly and painlessly. I am sending you hugs sweet friend. I do not understand what you're going through because I have not experienced it myself, but know that I will be here to listen if you ever need. My e-mail is tabbie963@yahoo.com
I will keep you in my prayers.
Thank you all for your kind words. You're right Catherine, sometimes the straws are all we have, and a straw is better than nothing at all.
Ann, being willing to listen even when you don't understand, is one of the most important qualities of a good friend, thank you for being one of mine. Hugs all
Heartbroken reading this, I'm so sorry you and your family have to go through any of this and I pray with all my heart this goes far far away with the treatment...much live and hugs Helene, I will be thinking of you all lots and Los xoxoxo nan
Thank you Nan. I really hope so too. Hugs back at you.
Sending you tons and tons of hugs and prayers ! We recently had a huge scare with our 3 year old (based on a photo, actually)! and the otphometrist didn't see anything but wanted to refer us to a pediatric specialist. They never called, and reading your blog today from LFCA reminded me, I have to call them tomorrow and demand the appoitnment !
Yes mon, please contact them about your little one immediately. It doesn't have to be anything of course, and I'm really hoping it's nothing, but if it is, it'ss very, very important to get treatment started right away. Sending hugs right back at you
Hugs to you. I'll be praying for your little one.
Thank you for taking the time, it means more than you know. Hugs back at you.
Perhaps you've already connected with her, but Jayme at The Tater Twins now 3 year old son was diagnosed with retinblastoma at 4 months old.
http://www.tatertwins.com/about-3/welcome/
Wishing you peace during your difficult journey.
Thank you for your kind words, and for posting the link. I appreciate it.
Here from LFCA, sending you hugs and prayers. I can't even imagine what you must be going through but please know you are not alone.
Thank you Heather, for reading, and for taking the time to comment. It means a lot. Hugs to you
I am so very sorry for such disappointing news. I hope that treatment is successful and one day your posts tell a very different story. You and your family are in my thoughts!
Thank you Jessica. I hope so as well.
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