Friday, February 15, 2013

Team Spencer: Day 1 & 2

A lot of stuff has gone on since Wednesday so this may very well be a choppy post. I'll try to keep everyone informed with accurate information to the best of my ability. My brain is VERY tired.


My sister and I went downtown for a very, very busy day of pre-admission procedures that were scattered all over the hospital. We met with the surgeon about his central line, he had blood work, an EKG and an Echo, and we had all of our questions answered during his physical. I'm not going to get into everything they said because they said A LOT. The things that really stuck out were:

-Some of the chemo will be injected into his spinal fluid. That scares the pants off me. But it will only happen twice.

-The second round of chemo (in about 4 weeks) will keep him in the hospital for up to a MONTH!

-His platelets had to be above 100 for the surgery and they were about 47, I think.

Like I said, I asked about 50 questions and while I felt very informed, that weight that had been lifted was back, and heavier. My sister and I went to the mall and picked up a bunch of new jammies for the little patient. Then I picked up Todd and headed to my parents' to give the information once. I couldn't repeat all of this. Some of it was terrifying and painful. I was mentally and physically exhausted. Then I got the call saying that Spencer would be admitted at 2:00 Thursday for a platelet transfusion. It was officially official.


I said goodbye to little Sully, which hurt me sooooo much. I wrapped up sone homework and then started to pack. Phoebe came over at 9:00 to help and BOY did she help. My head would not have stayed on without her. We ran to Target for a few things, I packed, she loaded movies on the iPad, and before I knew it, we were downtown. I felt ill after I registered him. They gave us a tour of his floor and showed us his (private!) room. We saw doctors and nurses come and go, he ate, his Aunt Jess visited, and then he received a platelet transfusion (they were at 139 this morning!!). Phoebe, who did anything and everything I asked (including my nails), headed home and then we were alone. All alone.

It was difficult because Spencer didn't have his playmat so he was either on my lap or in his crib, which is very cage-like. He was frustrated and I missed Sully so much and was getting so upset about what Spencer was going to go through. We were both off. We Skyped with his daddy (but we couldn't see him so I couldn't see Sully!!!) and then tried to sleep. It was a rough night. He woke up around 3:30 and was just...up. They drew blood and did vitals a few times and I ended up just keeping him with me on my "bed". Eventually he made it back in his crib but by then, it was too late for me to relax.


So today we woke up and watched The Muppets. Todd came with the playmat, more toys, books, DVDs, and snacks, and it's a good thing...because we're going to be here longer than we thought. Probably a week or 2 AFTER treatment (which ends on Tuesday). This breaks my heart not only for Spencer but Sully. I know he's in good hands with his dad but he needs his mom, too. I'll probably go home Sunday afternoon and come back Monday morning so I can get some Sully time. I love him so much. But back to today...

His central line was scheduled for 10:45 so OF COURSE he didn't go back until 1:00, grrrr. The line went in without a hitch. Same with his bone marrow biopsy and the IT (yes, IT) chemo. He won't have to be poked anymore which is awesome! He was a little groggy when he came out of anesthesia. And it made Todd sad to know that the chemo was officially in his body. It's going to run for 96 hours straight. It's running as I type this while he's asleep in the cage. I mean, the crib. He's favoring his side that the line is in but got some Tylenol. If that doesn't do the trick, he can have an itty bit of morphine.

He had some juice and snacks as we waited for his dinner. He ate really well for still being a little jacked up from the anesthesia. Side effects from the chemo typically show up around day 7-10 after treatment but I'm still in a panic. They're constantly running Zofran and Ativan while we're here to head off any nausea. So far, he seems like my Spencer. I want to keep it that way for as long as possible. Smiling, laughing, playing, charming people. That's the guy I know. I want to keep him from experiencing any pain. Ever.

So now, we just hang out here in the hospital. Todd will be back tomorrow and there will be visitors. Sunday, Sully Porkchop gets to come!!! I can't wait!!! But these in between times are rough. My mind runs to scary places. Sad places. I'm trying to relax and take care of myself so that I can be at my best for Spencer. He needs me to have my head in the game so he gets the best care possible. And other people depend on me to keep them informed...his grandparents and support team.

So I better get to bed. Tomorrow is another day...though much less involved!


  1. Thank you for the update! If there is one thing I remember from my own experiences it's that you blog when you can and that it's definitely easier to keep everyone updated at once than to make a hundred separate phone calls.
    Every time I had my bag of Cisplatin (the chemo drug I was on) hooked up to my IV, my mum would look at it and say, "Go get that tumor." That is what I kept thinking yesterday when I knew Spencer was getting his chemo. Go get that Leukemia. Go get it.
    You guys are amazing. I am truly honored and proud to be a part of your lives. And I will be back for a visit sooooon!
    Love you all.

  2. Sending love! Lots and lots and lots of it.

    Phoebe's Mum