While it has been awhile since I’ve update yet again, I have been thinking about what I’ve wanted to share for quite awhile – life has been going on.
A couple months before Christmas we contacted Make-A-Wish for Titus. He met with his wish granters (who are incredibly sweet and kind) at the beginning of this year and at first he wished for a bubble gun… They poked and prodded a little more and he told them he wanted to meet Goofy – ie: go to Disney. Needless to say, he, along with the rest of us, are going to Orlando this summer. It is rather surreal to think that our son has a life threatening illness that even qualifies him for this – it is bittersweet to say the least. Of course we are excited to be able to share something like this with him and our girls. On top of being blessed with a family vacation, we were informed a little over a month ago that his wish had been adopted by a local couple (which means his wish is being sponsored by a family – normally businesses would do this) We have had a chance to get to know them and it has been an overwhelming blessing. God has brought many people into our lives throughout this journey and we are constantly in awe of the goodness and kindness of others. I know I say it a lot, but thank you so much to everyone for supporting our son and us – we thank GOD for each and every one of you.
Moving on…
Titus was scheduled for his lumbar puncture this past Wednesday along with chemo and IV chemo as well as beginning his week of steroids. We got to clinic bright and early ready for a predictable day… At this point I don’t know why I even pretend to think of any of this as predictable! He was an angel as always when his port was accessed, only for it to not work. The nurse attempted to de-access and re-access his port hoping that maybe the needle was touching the port weird and causing it to get stuck… Unfortunately this did not work and we went through two hours of waiting around for a “clot buster” med to hopefully unclog the catheter along with going to radiology for a dye study to see what the issue was. Come to find out there is a nice clot at the very end of the catheter – while I was told this is not a danger to him because it is so small, it is not allowing any blood to be drawn out of the port. We went back into clinic yesterday and gave the “clot buster” meds two more hours, sitting there with fingers crossed hoping that it would work. It didn’t – so Titus had to have blood drawn out of his arm for labs – during which he was super brave! We will be scheduling a time within the next two weeks to replace his port. While this is very frustrating – there are worse things! He will have his lumbar puncture at that time as well so he isn’t sedated any more than he has to be.
So, let’s talk cancer. Did you know childhood cancers on average have a 5 year survival rate of 80%? (Some cancers survival rates are significantly less.) This means a child who is diagnosed has on average an 80% chance to still be alive 5 years later – but what about 6 years later? Did you know that 7 children will die each day from childhood cancer? There is a sweet boy named Silas who has fought for a year against liver cancer that is about to enter heavens gates at the age of 4. He is doing something amazing. Within the cancer mom/dad community there is a great big push to get childhood cancer on the forefront of peoples minds, trying to raise awareness which in turn leads to more funding for more research, which is what we need! Silas is getting people’s attention by the thousands. Visit Praying for Silas on Facebook to show your support and GO GOLD for childhood cancer awareness! Also, visit www.thetruth365.com and when you have time watch their video and find out what you can do to help spread awareness.
Alright, you’ve been updated. God bless you and thank you again for your prayers and support! We are forever grateful.
