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'.

Thursday, March 21, 2013

Round 2: Back In Action

They just took my baby boy back to surgery for placement of another central line. It should be about an hour or less and then we'll check into his room to start the second round of chemotherapy. Our time off went way too fast. And even though we've been through this before, even the line surgery, it isn't any easier. I hate knowing that at this moment, they're putting my dude under anesthesia, intubating him, putting in an IV, and threading a line into his chest. He's so tuff. So strong.

We got some good news this week. The official results from Friday's bone marrow results showed no abnormal cells!! Well, there were some but they weren't the same as they were before. They could just be really immature cells. His doc said this is awesome news. We can't call it "remission" until a few tests, which take longer, show that all of the Leukemia markers are gone but these results prove treatment is working! No need to tweak the plan or change anything!!

The fact that the cells are gone does not mean that we get to stop chemo. He still has 5 treatments to go, including this one. Time for a quick lesson: the first part of treatment (Induction) is to get rid of all the nasty cells and bring on remission which is no evidence of cancer. The second part is post-remission chemo (Consolidation). This is meant to catch any cells that the blood tests and biopsies miss. It happens. You can't look at EVERY cell in the body. Without the Consolidation treatment, his cancer could/would come back.

The good news about his good results is that we MIGHT get a tiny break this round. He's getting chemo for 2 days (through his line and an injection into his leg) and then gets 5 days off. As long as he doesn't spike a fever, his doc gave us the OK to spend the off days at home. I'll take it!! After the mini-break, he'll have 2 more days of chemo and then about 3 weeks of hospital time. Todd and I are going to keep up our plan of my being here Monday - Saturday and him here Saturday - Monday. It's not great and it's not easy but it works.

August/September and the end of all this junk seem so far away but at LEAST there is end date. This will all end for him and for us. Some people are not so lucky. Being in my position as the loved one of someone with cancer, I am sick of cancer affecting people I love. Not just the people with the disease but their loved ones. It's mentally and physically exhausting and incredibly painful for them. I'm thinking about a few people in particular today and wishing I could make their bad days better.

The OR called out to the waiting room 15 minutes ago to let me know he was asleep, they started, and he's doing great so far. I will try to update later tonight after the chemo gets going. As always, thank you for your support. We are extremely lucky to have such a fantastic support system. Thank you from my whole family. Oh! The OR just called again, they're finishing up, and he's doing great. Can't wait to see him!

Friday, March 15, 2013

Time Is Winding Down: Round 2 Approaches

Spencer and Todd just left for Spencer's 4th bone marrow biopsy. I feel guilty for not going but we need to budget our babysitters for when we're in the hospital again. We won't know the results until early next week but this isn't as stressful as previous biopsies. We were in limbo then but now, we're already in treatment. What we WILL learn is where we stand with the Leukemia cells. But whether the cells are gone, decreased, or whatnot, he still has 5 rounds of treatment to go. No matter how you slice it, we've got a ways to go.

As his mom, it kills me to know that Spencer will be sedated and I won't be there, but I've seen it first hand twice and I know he's in good hands. Todd will keep me informed as the procedure goes on and it will be over before I can even panic about it. I plan to give Sully a little extra attention which I feel he needs. Maybe I feel that way since Round 2 is quickly approaching. Spencer and I get a lot of bonding time so I've got to admit, I love my solo moments with the Moose.

In other news, we had a clinic appointment on Wednesday. They drew his blood and his platelets were 312! Normal is between 150-400!!! Plus, platelets always bounce back first as treatment does it's thing. He hasn't lost any weight and he's gained half an inch. After all the peppiness died down, I had to hear some non-awesome things about Round 2 of chemo.

It's going to be much more intense. The rest of his hair WILL fall out and he'll probably have severe mucousitis. This could mean he'll stop eating and drinking and if he does, he'll have to get nourishment through his line or through an NG tube (from his nose to his stomach, bypassing any swollen areas). He had one when he was in the NICU and those are not sweet memories for me. Bummer.

His doctor called later in the day and said his ANC is only 450 (this is the number that had to be 250 for us to leave the hospital). This is in the low side and he's still in the "recovery period" after the chemo but Round 2 cannot begin until his ANC is 1000+. They're checking it today before the biopsy and again next week before we're readmitted. I'm not sure what happens if he doesn't hit 1000 before Thursday. Is chemo delayed? Will he constantly be poked until he gets that number??

Not sure why, but everything is really starting to sink it. I went right into Attack Mode when his treatment plan became official and we've had so much support that I've felt invincible (even when pathetic lowlifes ignorantly ran their mouths). But now it's really sinking in that he has cancer and my family is going through what it's going through. When you imagine life with your future children, I bet it doesn't include childhood cancer. But it is what it is.

The one plus right now is that while this next round will be really long, we MIGHT get a break. The chemo runs 2 days, off for 5, back on for 2 (and then a 3-4 week "recovery period"). So his doc said its fine with him if we go home for the 5 day break!! BUT the chemo is so intense, it really all hinges on how he does and if he gets an infection...which is unlikely after 2 days. But if I've learned ANYTHING, it's not to get your hopes up during this process.

So now I wait to hear from Todd and then to hear from the results from the docs. At this moment, surgery for a new central line and Round 2 are scheduled for Thursday. And this time I'll try to blog day by day so I don't forget things. As always, we appreciate all of the support. And a huge thank you to everyone who made purchases from The Team Spencer shop. You all have amazingly big hearts and I hope to be just like you when I grow up.

Monday, March 11, 2013

Finally: Home Sweet Home

I know it's been a week since I blogged and most people know why that is but if you don''s because we FINALLY got to come home!!! After 21 days in the hospital, Spencer's ANC got to 210 and his platelets were about 155 (I think) which is in the normal range! He hasn't made normal platelets on his own...EVER! His bone marrow is starting to do its thing!!!

Some blasts were showing up in his blood but his doctors aren't concerned. When the bone marrow starts to work again, it will boot any remaining nastiness out. So that's most likely what the blood test picked up, dying nastiness that was being evicted from his marrow. And we were evicted from the hospital! Of course, we have to go to the clinic this Wednesday and he has a biopsy this Friday. And let's not forget another surgery to replace his central line. That's scary stuff.

But 2 weeks at home? I'll take it!!

He's been so great, too! Like we were never at the hospital. Like he doesn't even have Leukemia. He's just as awesome and happy as ever. And Sully is SO happy to have him home. But there has been one dark spot in our happy homecoming that I didn't think we'd deal with for several years. An ignorant, uneducated bitch (believe me, I could, and have, called her worse) called Spencer a cruel name.

I knew this girl was a total troublemaker already but when someone calls my 19 month old, cancer fighting son who has never done ANYTHING to ANYONE a name, this name, purposefully targeting his developmental issues...pathetic. And she's a mother (in the sense that she has a child, not because she's doing any parenting) so she should know better. But why am I surprised?? Expecting anything different is my fault.

Spencer and Sullivan are my best pals. My job. My hobbies. They are more awesome than I could ever hope to be. I will not let anyone hurt them, ever. And again, I have to wonder what kind of human garbage calls an ill baby a name?? You really have to have nothing else going for you to stoop that low. Friends and family have all rallied during the situation and it's just another way that people have shown how much they love Spencer. You don't mess with him (or his mom).

And I've been reminded by one very wise broad that there are 450+ people on Team Spencer (and that's just the people on Facebook). 450+ people vs. 1 bitch not worth a second thought. That was comforting. But shamefully, the suggestion that people like this always get their comeuppance felt even better! I'd like to say I let it roll off of my back right off the bat but she poked the dragon (too much Game Of Thrones). It took a minute to remember that some people are just sad.

So moving on...head held high.

As I said last week, Spencer's hair started to fall out. It was suggested by Todd's uncle that I take the hair myself and not let the disease have it. So...BOOM! Mohawk! Well, Safety-hawk. And it looks adorable. It made me feel a little better about him shedding. And my utterly rad friend Jimbo, in a show of solidarity, shaved his head. That tugged at my heart strings in a big way. So many people have bought merch from The Team Spencer shop and Phoebe is starting a new website...I sort of thought that as treatment went in, interest in this whole mess might die down. But Team Spencer is stronger than ever.

And I love each and every one of you!!!

Now back to enjoying my sons and my home!

Tuesday, March 5, 2013

Team SULLIVAN & Spencer: Day 17 - 19

SATURDAY 3/2 (continued)

I can never get home quickly enough when I leave here on the weekends. It feels like we live on the moon! When I walked in the door and it was clean and the laundry was already done, it was great. I was able to totally focus on Sullivan. Going into the living room, Sully was following my voice and smiling which made me MELT. I scooped him up and was just SO HAPPY. Coming home for a little mental health break was the right decision.

Even though it was snowing, I packed Sully into the car and headed to the grocery store. It was nice to be out with him doing something normal. I filled the car with things I wanted to cook. It wasn't even that I wanted REAL food. Being able to cook was going to be amazing too. Once we got home, we were in for the night. I made myself a nice dinner and had a carpet picnic with my baby boy. Another day of good food and bad TV and I loved every minute of it. Even hanging up laundry was relaxing. Sully Porkchop fell asleep holding my finger, swoon, and I slept like a CHAMP!


I woke up next to the most handsome red head on the planet and was still riding a happy wave. More TV, laundry, paying bills, taking a shower...just regular day-to-day stuff that I was taking for granted. I cooked arancini (parmesan risotto cooked in chicken sock, stuffed with mozzarella and fontina, breaded, and fried) which was time consuming but amazzzzzing. Maybe the best thing I've ever cooked. Paired that with a tomato mozzarella salad dressed with lemon and couldn't wait even MORE to just be home, cooking and
living. I was on a cloud. And Sully was perfect company.

While I was getting Sully dressed for an adventure into the real world, Todd told me that Spencer's hair was falling out which broke my heart to hear. I was hoping he was just overreacting. I had to see it for myself. I went to Target with my mom to get some formula and a few things for the hospital. I was really starting to feel low about having to come back here. I can't wait until my whole family can be together again but it won't be for long enough. And if Spencer was really losing his hair...I just wanted to stay in my little home bubble with Sully. And I didn't even feel bad about that. I felt bad about NOT FEELING BAD. Does that make sense? Once again, Sully fell asleep holding on to mom.


I packed the bags, packed the car, and after a Starbucks pit stop (it's the little things), I was on my way downtown. When I got here Spencer was happy to see me but more to see his baby brother. I was so glad that they got to play and just wanted to scoop them both up and run. But when I ran my hands through Spencer's hair, I had a handful of strand. Every time, more and more hair fell to the ground. It was all over his may and his pillow. I broke down and cried while Todd rubbed my back. I would've gone into the bathroom but I was frozen.

Out of everything he's gone through, will go through, could go through, losing his hair should be the least of my worries. My pal Jen said that a moment like this is much harder than people think. It's the first obvious sign that things are different. And Phoebe said that because she DIDN'T lose her hair, it was hard for people to realize she was as sick as she was. It goes both ways. He's by no means bald right now but he's thinning out. He had a nice head when he was a baby. I just hope he doesn't lose his dark, thick lashes. Sigh...

Spence was having a lot of difficulty with his IV while I was gone and nothing had changed. Every few minutes, the alarm went off. The nurse spent all her time in our room and Spencer was so frustrated because he had been poked, prodded, rearranged, re-taped, re-arranged sooo many times. After a few visits from the IV team, they moved it out of his anticubital to his hand and everyone was much happier. You can't put an IV in the fold of a baby's arm and ask them not to fold it! Hours of trying to get this IV squared away, the little man was exhausted and so was I.

I had been too busy to REALLY miss Sully until bedtime but when the feeling came, it hurt. I didn't feel as broken down as I did by the time I went home but I knew I couldn't take much more of this. I know it could be worse. I could be alone, no friends, family or help. And Spencer could be acting totally sick, which he's not. But I'm human and the situation is still rotten.

Saturday, March 2, 2013

Team Spencer: Day 13 - 17


This day was rough from the get-go. I noticed that the spot where Spencer's central line was threaded in felt lumpy. You could clearly feel the line which I hadn't noticed before but it had also been bandaged. I brought it up in rounds and they sent someone from surgery up to look at it. The NP from surgery agreed that something felt off so she ordered an x-ray which showed that the central line had coiled up and moved, but NOT closer to the heart (sometimes the line can tickle the heart and cause arrhythmia). My parents were visiting so they got to see what one of my exciting and stressful days is like. Pure chaos and a very upset little boy. You think it's going to be a smooth day...until it isn't. Eventually, they believed the old line would have to be replaced now and not when he had his next biopsy. So Spencer received platelets and stopped eating in preparation for surgery. A second surgery in like 10 days.


I woke up to a bunch of docs hovering over me looking at Spencer who had slept in my bed. This surgeon didn't believe that Spencer would need surgery which was the polar opposite of what I was being told the previous night. But he hadn't looked at the x-ray which makes TONS of sense. After looking at it, he decided to pull the line out right here in out room which was terrifying but quick. And I was told to go ahead and feed him because no replacement line was going in at this time. They would just use the IV that they had put in for surgery. The problem with this was that he was going to get poked a lot. The line was to save him from this. And it allowed him more mobility than an IV. And IVs don't last longer than a few days. It took FOUR TRIES to get that one in. He's already a pin-cushion! But we had some visitors and the chaos from the day before died down.


This was the worst day emotionally. I was already horribly exhausted from all the "fun" of the previous 2 days. During rounds, I was told his ANC (can't remember what it was) and it wasn't close to 250 which is when we'd get to go home. I believe my Facebook status said, "Day 14 and going home is nowhere in sight"...which was inaccurate since is was Day 15. Anyway, after rounds as I was having a woe-is-me moment, one of his docs came in and said, "Don't hang your hat on it, but I think you'll go home today or tomorrow". I was SO HAPPY! I texted Todd and my whole family and almost wept openly. They felt so good about it that they phoned in his prescriptions and gave me a calendar of upcoming events: a clinic visit on the 6th, bone marrow biopsy on the 15th, central line placement and admission for Round 2 on the 21st. We were GOING HOME!!

Until we weren't. Spencer woke up from a nap very upset and making weird noises. I knew he felt warm but refused to accept it. He had his first fever, ever. Right as we were going to be released. And then he threw up down my back. He was sick. It was official. My hopes of going home were crushed. This was the first time I was really crushed. I got my hopes up which was a mistake. The fever continues on and off all night, with the high being 102.7, and his heartbeat was out of control. They did another x-ray and considered an EKG, started antibiotics. He was stuck to me like glue. Any time I would set him down he'd rage. So he slept in my "bed" and was a wet, sweaty, feverish mop all night.


The fever continued on Friday so they did a blood culture which required several more needle sticks...made me miss the line even more. This had to grow for 5 days. The criteria at this point for us going home was no fevers, negative blood cultures, and an ANC of 250 or higher. He was glued to me again for most of the night even after his fever broke around 5:00. He had visitors but was pretty spacey and didn't have much of an appetite which had been disappointing. But very late in the day, he got an energy boost and played. Looked like the worst if it was over for him. For me...I was a wreck. I couldn't decide if Todd and I should switch places for the weekend as planned. I was worried about either of us bringing germs in and out and about him needing me and me not being there. But I missed Sully so much and my brain was feeling a little unstable. I was giving up hope about ever really getting to go home before Round 2 so I REALLY wanted those 2 days with my baby and that made me feel guilty. I didn't know what I should do and felt like I was being eaten alive from the inside out.


I was still wavering about staying and going in the morning. Spencer's ANC was 140, the blood cultures were negative, and he had no fevers. Not the criteria for us to officially go home but enough for me to feel good about spending time with Sully. Spencer was in good spirits, eating a little, and had put me through the ringer. His diaper leaked all over my last pair of jeans and he unscrewed his IV so he, his mat, the floor, and my hands were covered in blood. I actually made mental note of the moment I hit my boiling point. If I didn't get some time in the real world, I was going to be on a slippery slope to cracking up. So home I went! I didn't been give Todd 2 seconds to get in the door before I blew passed him like The Flash!