Thursday, September 12, 2013

Done: This Is The Dawning Of The Rest Of Our Lives

I'm blogging from my bed! And it's not the weekend! I'm blogging from my bed and Spencer is next to me! It's OVER! Hospital life has called it quits and much earlier than we expected might I add! I never have to pack a hospital bag again!!! I threw away my slippers!  So how did we go from having weeks to be there to coming home?? It's a weird but good story...with a fantastic ending. Never a dull moment for us! Get comfy!

Friday (the 6th) will go down as just one of the weirdest days ever. While sitting there chatting with a nurse, I couldn't help staring at Spencer. I thought it was the way he was sitting that made him look like he had no neck. But then it looked as if his head was sitting directly on his chest. Because it was! Where was his neck?!? His chest and shoulder were so swollen, I've never seen anything like it. He looked like Baby Hulk and the swelling seemed to be spreading across to the other shoulder. When I touched him, there was a weird squish tonhis upper body. The pictures I have do ZERO justice. 

Little things, clues if you will, started to come together...he had been in some unexplainable pain for 2 days and not sleeping well, they couldn't draw blood from his line, he hadn't been putting out many wet diapers, and he went from 10.2 to 11.3 kilos while barely eating. It could've been a clot or an infection but an X-Ray showed something I dreaded: his line had pulled out of his superior vena cava and was coiled up in his shoulder, pumping fluids into his tissue. I was reassured that he received all his chemo medication as it was definitely in place at the time. And no clot or infection was a really good thing. They also suspected that the fluid would be absorbed within 24 hours.

A decision had to be made about a new line. Yes, chemo was over but he still needed daily labs, meds, and possible fluids and transfusions. Yes, a regular IV COULD be used but they don't last long. If he didn't have a line anymore, there really wasn't a reason why he couldn't go home because the threat of infection would be gone. But the docs were leaning toward removing the Broviac and trying to place a new PICC. The PICC team, who couldn't place one last time due to scarring in his veins, said they would try ONCE in the morning. If it wouldn't go in, he was out of luck.

But in the morning, I woke up to 2 of his docs in our room, and they asked me what I wanted. Of COURSE I didn't want him to have a new line! Not just because I selfishly wanted him to go home. This would be his 6th LINE! And putting him through that for a few weeks of recovery and MAYBE needing it just seemed cruel, especially when it could set him up for another line infection. The 2 docs felt the same but it was up to the big dogs.

And they agreed as well, shockingly!! The new plan was to sedate him, pull the Broviac, and not place a new line. My aunts and I went  with him and stayed in the room during the procedure (add that to the procedures I've seem). As quickly as he fell asleep, the damn thing was out and we were headed back to his room. He was a MUCH happier (and less swollen) guy when it was done. And I was much happier because the main doc said she wanted him to stay overnight just to make sure his labs were OK but that after platelets, he could go home...for GOOD!! I didn't want to get my hopes up that things eould stsy gold overnight. We never had much luck.

But I guess it was our lucky day after all. His labs looked great so he just needed platelets and he could go. I weeded through all of our things, throwing out my toothbrush and slippers, leaving toys and even his play mat behind (once we got home, I even had to get rid of most of his hospital pajamas). There were too many memories attached to everything. So as I packed, we waited on platelets which turned out to be a bust! They started them and then noticed his IV was leaking...told you they didn't last long. Rather than start a new IV, they had us put his handprint on the wall of kids that finished chemo, his doc sang Leaving On A Jet Plane, and he drove home, FOR GOOD.

We rolled up to balloons, a banner, a cake, and flowers. My parents and sister's family all came to welcome him home but he was most excited to his his brother! They had a sweet moment after being reunited. I had some tears in the driveway before I even walked in the door. After his visitors left, we got Chinese food, locked the door, and let it all sink in. After 7 months of treatment and 100 total days in the hospital, Spencer was home.

We pretty much stayed barricaded in the house for the weekend besides a trip to Costco and a stop to see my parents on Grandparent's Day. We ate, watched football, hung out, and just tried to BE, which I'm having a little trouble with. I can't sit still. Can't stop. Can't sleep. I guess the plus side of that is I'm getting a lot of projects done. But I'm exhausted and feeling just a tad bit nutty. I'll deal with that another time. When I implode probably. Monday, we picked up Aiden and all went to Fathead's for the celebratory meal I was waiting for. Spencer finally got his chips...and I got a Trooper.

I'm fingers are tired of typing so I'll wrap up. Monday he had a follow transfusions. Yesterday he had a follow transfusions! While his ANC is low, his platelets are going up so everything else should follow. When he has recovered, he'll have his biopsy and then we'll know if he is cancer free!! When he is (WHEN, not IF), his follow ups will go to once a month for awhile. For now, we go back next Wednesday to see how he's progressing.

This weekend, we have tons of fun planned. Friday is the World Apple Pie Eating Championships at Mapleside and we will be there! Joey Chestnut will, too! Saturday we'll be at German Central for their Oktoberfest and Sunday we're watching the Browns game with pals. Please feel free to join us on any of our weekend adventures as we get back to real life!!!!

Updates next week! Thanks for the continues support. We still need it!

Thursday, September 5, 2013

Round 6: Officially Unhooked

That post title might lead you to think that I'm saying I personally have become unhooked...and maybe that's true. But what I really meant was that Spencer is unhooked from chemo!! It's over!!! Monday evening, he finished by 6 rounds of chemo and now we're in the recovery period. Waiting for his numbers to drop and come back up so we can get the HELL OUT OF HERE and never look back! I don't want to see these pajamas. I don't want to see these toys. I don't want to watch Wreck It Ralph or The Lorax for a LONG time. I don't want to report everything he eats or drinks. I don't want someone coming in during the night to take his vitals. I don't want to only have short weekend visits with Sully.  But how long until I get to see this place in my rear view mirror??

As of now, Spencer has been here 20 days.

His ANC is acting a little nutty but chemo just ended so that's common. 710, 690, 1162. Usually it drops to nothing, comes back up, and we bolt. But not always. Sometimes he never bottoms out so we just get cut loose. The docs thought he'd establish a pattern in the next day or 2 BUT the line doesn't seem to be working. It will flush but won't draw blood!! Now this isn't as earth-shattering as if he had a line infection. But we need this line for a few more weeks. They give him anti-nausea meds through it, do blood and platelet transfusions, and draw daily labs. They managed to get it working yesterday so hopefully they can kick start it again. At least the situation isn't hurting him.

Though SOMETHING is.

Tuesday night, Spencer cried for over an hour which is unlike him. After he eventually DID fall asleep, he'd wake up every few minutes whimpering and sitting up. Just seems miserable. And he's spitting out every food I've offered, only drinking a little milk. So they suspect he is in some pain, possibly from irritation in his mouth and throat. He's had Tylenol and Morphine here and there. Did a lot of sleeping yesterday, poor guy. I did enjoy the extra snuggles though. It's nice to be needed.

So the countdown to going home is on and it's really anyone's guess as to when this might happen. Up to this point, the longest we've been admitted for a round has been 23 days. We're going to see that come and go. I just want my family to be back at home together and for our life to go back to normal. But honestly, I won't feel real relief until after his bone marrow biopsy comes out clean. I've got a bottle of Southern Tier Pumking in my fridge to celebrate getting the phone call saying this nightmare is over. I'm ready for it.

I had a really great long weekend with my family, friends, and my main Moose, Sully! I've got the happiest baby on the planet and he's going to be 1 soon!! Sniff, sniff. Everything just feels right when I see him. We made the most of every minute of every day. I came home to a spotless house (thanks parents!!) so I just got to relax...even though I never really stopped. Went to dinner and had a cupcake baking party with some of my family, watched Grey's season 9 now on Netflix, hung out downtown, shopped for and cooked real food, and went to Oktoberfest!! That was definitely the highlight of my time home. I was so happy all day. Best Labor Day ever. I have the best friends anyone could ask for. They keep my head screwed on. I felt ready to come back on Tuesday. I made the most of my time.

I'll never take my free time for granted again.