We’re almost done with Phase 4 of Lincoln’s treatment. It will end on October 24th, less than 2 weeks from now. Hallelujah. Although the first half was hands down so much worse than the second, the back half hasn’t been a walk in the park either. The second half has involved back to back spinal taps only a week apart, several fevers that have had me wondering if I should take him into the hospital, and two weeks of Ryan and I giving him chemo through his port at home. In Pittsburgh they had home care nurses who came to the house and gave him his port chemo but we don’t have that luxury here in Greenville. I was giving him his chemo but then got a big lecture from the doc. Since I’m pregnant I am not to handle any of it. Even wearing gloves. So now we leave it to Ryan which I prefer anyway.
Lincoln really does a surprisingly good job of leaving his tube, port and bandages alone when he’s accessed for days at a time. Occasionally he’ll pull at his band aids a bit or ask to take his tubes out, but overall he’s awesome at ignoring them. Lincoln’s spirits are up (except when he’s feverish….which has been about half the time) and his appetite is normal (or if anything down) which makes things so much better than the first half of this phase. Plus I feel about a hundred times better too now that I’m out of my first trimester.
Maintenance Phase is scheduled to start on Halloween day, but Ryan and I are expecting about a 3 week delay before his blood counts are high enough for him to start based on his history. Maintenance phase will last until June 2015. It will involve monthly chemo through his port, a daily pill that he must take on a stomach that’s been empty for two hours, monthly spinal taps that eventually turn into tri-monthly spinal taps, and steroids every 29 days for 5 days at a time. That last part kills me. There are a few other random drugs he’ll get here and there, but that’s the gist of it. It will be nice to get into a routine and know what our next 2.5 years will be like.
On a different note, I want to document his intellectual progress solely for the purpose of journaling as this blog is my only journal right now. My intention is not to brag, just to remember.
Lincoln is obsessed with all things spelling and words. He loves them. Here are some of the phrases he can spell right now at 3 years and 3 months. Most of them are the “super story answers” in his favorite show “SuperWhy”. It usually goes something like this.
Lincoln: “Mom, you want to spell (Insert phrase)?” Mom: “Yes. Please spell it for me”.
Then Lincoln spells out the whole phrase with no breaks between words. Some of these phrases include, Enjoy the Game. Prove it. Be Yourself. Take Turns. Follow the Directions. Save Water. Trick or Treat. Clean up.
Some of the other bigger words he loves to spell right now. Spaceship, Halloween, Elephant, machine, alphabet, surprise, good night, pajamas. Confession. About once a week he asks me how to spell words I can’t spell that I should be able to. His favorite book to read is Dr. Suess’s ABC’s. It’s a tongue twisting Book that goes through the alphabet using alliteration and silly sentences for ever letter. He can read every word. Although it is partly from memorization.
His favorite joke is to spell something that starts with a K with a C to be fun. For example, spelling "Key -Cey" He thinks it's hilarious
Love you Lincoln. Kind of worried about how bored you’ll be in Kindergarten.