Sunday, March 31, 2013

Round 2: Nothing But Setbacks and Stress

I haven't written in awhile and per usual, there have been plenty of adventures to document. I'm mentally, physically and emotionally beat up to be honest. I'm home for my 2 day break and got to spend Sully's 1st Easter with him and while I LOVE SPENCER, I can't imagine going back tomorrow. Can I runaway? Ha, I'm kidding.


Yeah, I'm kidding.

On the 21st, Spencer received a new central line (surgery #2), we checked back into a room and chemo ran for 2 days. Luckily, we were allowed to go home for a Heavenly 5 day break which we kicked off by seeing the Easter Bunny and having an awesome dinner together. When we came back to the hospital this Thursday, the 28th, everything just went haywire.

A patient on our floor had Legionella bacteria which is water-born. Chances are they picked it up at home but to be safe, the water had to be cut off to our part of the hospital. No showers, teeth brushing, hand washing, ice machines, floor mopping, etc. Anything you had to do required bottled water or a trip to another area of the hospital with 2 showers for all the parents. That was a little inconvenient and would remain so for 14 days. But that was manageable.

NOT so manageable was the suspicion that Spencer's line was infected. Long story short, they decided it was better to be safe than sorry and Spencer had surgery (#3) to remove the line and put a PICC line in his arm. They cultured around the old line and his blood and it looks like he did have an infection but what it was is still up in the air. He had boatloads of antibiotics before the surgery so the new line should be OK but I won't get my hopes up since nothing seems to go our way.

Chemo that was supposed to start Thursday is STILL on hold. This means that we haven't even begun the 3 to 4 to 5 week stay in the hospital! If things go on too long, there's a chance that we won't go home between rounds 2 and 3. That thought is breaking me inside. That could be like 2 months in the hospital with only weekend breaks. 2 months with my family foursome not being together. It's enough to make a person go bananas.

Tomorrow, the entire unit is being moved from Rainbow to Seidman Cancer Center. Another adjustment to make after we were getting the hang of things where we were. Testing the unit and getting the all clear regarding the water is a lengthy process so we'll be at the temporary location for 4-6 weeks. I hear it's beautiful but it'll be our 5th room since all this junk began. I try to keep my head up but I'm under a cloud right now for sure. There will be an end but it seems so far away.

In good news through all this garbage, Spencer is doing well. He bounced backed quickly from the surgery and he's as playful as ever. Plus he tested negative for Legionella bacteria. And Sully is getting bigger and more awesome every day. I'm so in love with my little Porkchop. His 1st Easter, though separated from his brother and father, was a sweet little day. He makes my heart melt. They both do. Only getting 48 hours or less with him a week just isn't enough. But it is what it is.

I owe Sully a post of his own since I didn't post for his 5th or 6th month birthday. Maybe that'll make me feel better while he and I are separated. I'll try anything to make the time go by faster. Anyway, Happy Easter. Cross your fingers that chemo starts after we relocate tomorrow. I need this train to keep truckin'.


  1. Is the new place you're going to the one by Southwest, or is it still downtown? I'm sorry if you posted that already, I'm a little behind on things.

    1. This is still downtown. Seidman is part of UH, like Rainbow. If you're on Euclid, you can't miss it. It's a HUGE new building on UH Drive and Euclid.