After a year I don't know that it serves the first or last of those purposes anymore. It can sometimes feel like an obligation to write when nothing is really happening and I hope that no family has to go through and take the road that we are now travelling as it seems to get darker as we travel upon it.
So here's the update. In short, there's no news. No GVHD and thus another round of chemo and T-cells to come in the next couple months. The doctors say on average takes two and a half weeks to get GVHD, so there is still time for it to show up, but with no signs now, it seems unlikely.
He's home this week, but he doesn't leave the house because he's still got the cold virus that his low blood counts are incapable of helping with. He smiles but he's only awake five or six hours a day, and I'm at work for two of them. I should be more grateful, but sometimes it's hard to see the light. We've also noticed what seems like some additional regression. He doesn't use his right hand anymore and has stopped climbing the stairs. We don't know if this is because he's tired or something else, but it's hard to see him taking steps backwards when we want him to move forward and continue to develop.
Anybody I tell the recent news to seems to think this is all great - he's home, after all, and he's not really sick right now.
Honestly, I'd don't know if I'd rather he just got sick so we could move on to whatever's next. Or if what's next is worse and we should just enjoy this time and hope it takes along time to move onto the next step. It's just hard waiting and not doing anything.
Next week I've agreed to do a public speaking gig at a charity event. Helping Families Handle Cancer has been incredible for us, giving gift certificates to pay for gas and food. It's kept us from dipping further into the money that's been donated in the past year, of which there is enough for now but is nice not to use as we don't know how long this road we are travelling will take. I always wanted to use some of that money to pay it forward some day, but realistically it won't happen.
Instead I give of my time and our story to pay it forward. Helping Families holds an annual art show and auction to raise funds, and I'll talk to the audience about what it's like to be in our situation and how important it is to have the community support us through organizations like this one. See the link to buy tickets to the art auction.
I hope it helps them.
I think of little Dom so often and keep praying for the miracle you deserve. Your blog is so heartfelt, and honest. I hope you can feel,the love and support from so many even when you're in dark moments. Be kind to yourselves.
ReplyDeleteI have honestly been astounded that you've had the energy to keep this blog updated. I feel that it is a beacon of honesty and hope, especially in the dark times, so I hope you keep posting when you have news, but not if you don't get anything from it yourself. I know from experience that babies (and children) who get sick do regress sometimes, and then they make up for lost time when they are better. Maybe that's all this is. The waiting, especially in light of how focused you are on the best outcome - a cure for Dom, must be so exhausting and frustrating. As someone who donated, as lovely as it is that you hoped to pay it forward, I fully expected it to be used for your family. I will donate again, and again and I believe most donors feel the same way. All my dreams and hopes are with you and Trish.
ReplyDeleteThanks for all you do Soan. I bought a ticket and I hope everyone who reads the blok will buy a ticket and send the ticket sales thru the roof. I wished there was more we could do for your family.
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