Friday, October 12, 2012

Delayed Intensification Almost Over & Spelling Obsession

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.

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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.

10 comments:

Mom said...

I love these pictures of Lincoln. He looks so happy and healthy. How do you spell a brave and smart little boy?
L-I-N-C-O-L-N!

Ali Snow said...

That's funny that he spells the Super Why phrases. And the C/K thing. The things little kids find funny. So excited to see him next month...it's been a whole year!

Steph said...

he is SO smart - and SOOOOOOO cute! love you lincoln and you Cheryl! glad you are feeling better - wish we were there to hang!

Amanda said...

Oh my goodness he ll be bored till like 6th grade. That s so impressive Cheryl. He is soo smart. You take care of yourself, that is scary about you touching his meds, I would never have even thought of that. Once again you all are amazing. Glad you are feeling better!

Lisa LaBanc said...

Good update, Cheryl. Man Lincoln is so smart. Glad first tri is over and maintenance is approaching.

mike said...

Love that little guy. And love you.

Dad

Atrena Holm said...

I think you should skip elementary school all together with that kid! He's a genious (did I spell that right?). I'm glad there is a routine in your near future!

Heather said...

Jeremy was one of those kids who was bored in school and had a different teacher each day because none of them could stand him for more than one day. He obviously turned out okay, so don't worry too much about Lincoln. Maybe he'll get an M.D. too!

I love his obsession with letters, spelling, and reading. It's wonderful because it's something he can enjoy anywhere, anytime.

DC Diva said...

I just want to say a big fat "AMEN" to every comment on here! What?? Busted for being prego and touching chemo? Why didn't the doc tell you to steer clear in the first place? That is so scary. Second, can't believe you are now in maintenance. Huge, huge, huge milestone. Finally, I seriously CAN'T BELIEVE what a genius child you have. Prodigy. You should contact Guinness or Oprah or Ellen or something. For realz. I want him to spell to me nonstop when I see him this weekend. (Maybe he could start by helping w/ your word verification... they are hard! Last one took me 3 tries!)

Also, Ali hasn't seen Lincoln in a year! Wow! True and sad! (I want to go on that trip w/ you.)

Sarah H said...

What a wonderful family you have to support you. So sweet.

We are thinking of you and keeping your family in our prayers.