Monday, February 25, 2013

Team SULLIVAN: Day 10 - 12


Saturday started off scary. I seriously almost lost my shit. Sorry, there's no other way to adequately say that. I was feeding Spencer and noticed a spot on his shirt. I thought maybe he had spit out food when I wasn't looking or threw up at night. I checked his sheets for any signs of a night time explosion and my heart stopped. It came to me. I rushed over to him and lifted up his shirt and his chest was covered in blood from his central line. I called the nurse and started to panic.

She took off the blood-soaked dressing and while it didn't look like the line had been pulled out any (it wasn't hooked up to anything, the plugs were just dangling), he may have been playing with it and popped a stitch. The large amount of blood was probably due to his platelets being so low. But of course, nothing could be confirmed without an X-Ray...besides my freaking out. That was confirmed by the water dropping out of my eyeballs. Crying at the hospital for the second time.

After 2 X-Rays, the doctors decided that the line had moved just a smidgen. It's in a safe place for fluids and meds but may need to be moved back for his next round of chemo. So the bottom line was that it was "OK for now". When he has his next bone marrow biopsy on March 15th, they'll rethread it then. It's not another surgery and should be an easy fix. But the excitement did not end there, sadly.

I noticed a spot on his back so I brought it up to the doctors who sent Dermatology up to see us. The resident who looked at it was on the fence about whether or not it was a bruise or something more. He said that the worst case scenario would be that they would have to biopsy it. I was supposed to go home to Sully! I couldn't leave Spence if he as going to have another procedure. Why NOW??? But Todd booted me out the door (after making me sit and's not easy to feed myself all the time here, I forget a lot honestly). So off I went and luckily, it is believed the spot was just an odd bruise that they would watch (it has already faded).

I got home and my house was spotless thanks to my sister. Even the laundry as done. Sisters are cool. She encouraged me to shower, again, a gift to everyone, and then it was just me and my baby!!!! Oh, and a boatload of A&P and Inorganic Chem since 2 exams were due on Monday. I swear Sully was bigger and smarter and had changed so much. I rarely put him down. His smile and laugh and new obsession with doing raspberries cracked me up. There was some good food, some bad TV, and some major cuddling in my own bed. I felt like I was at a damn hotel!!! I never wanted to go back the hospital. I know that sounds awful but it's true.


There wasn't much to Sunday and it was perfect! I woke up next to a very handsome redhead who was so happy to see me and my heart melted. He turned 5 months old that day (I'll celebrate that in another post). We went to hang out with my dad who made me an awesome chicken lunch. Real food. Finally. I went home and alternated between studying and playing with my baby. That's how we wasted the day away. It's how I want to waste every day. We crawled in bed to watch the Oscars with a piece of Godiva flourless chocolate cheesecake and only then did I start stressing about going back to the hospital. Tears. Lots of hugging and sniffing my baby. An angry, stiffening feeling was settling in. But overall, like I said, it was a simple, wonderful weekend. I was more appreciative for my family and home than ever.


Saying goodbye to Sully was painful. I had to make it quick or I would've just cracked. I got through my exams but it wasn't my best work. I was overwhelmed and unfocused. This isn't an excuse, it's just the truth. I just didn't want to come back to the hospital. Dreaded it. Panicked. But I was glad to see Spencer and Todd when I got here...and felt very alone when he left, and jealous. I LOVE Spencer but living out of a hospital room under these circumstances can crush a person. I'm jealous that Todd gets to work, be with Sully, cook food, sleep in our bed...all things I was taking for granted. Knowing I won't get to see Sully for another 6 days is tearing me apart.

How am I going to survive the next round when it's going to keep us here a month?? Why am I having such a hard time keeping it together? Spencer is a damn TROOPER but I'm struggling. I could put on a brave face and just smile through it but that would make me a liar. I don't have it in me to pretend I'm someone I'm not. I can't do anything extra.

Friday, February 22, 2013

Team Spencer: Day 7 - 9


Since the 1st round of Chemo was finished, Spencer was unhooked from the IV and they would only give him fluid at night. This was amazing because his cords were tucked away and he could get around more easily. He had plenty of energy and ate a decent breakfast and lunch. Not as piggy as usual but still eating, until dinner which he had no interest in again. Grandma, Grandpa, and Aunt Phoebe came to visit and I got to take a shower, a gift to all. Spencer had a BLAST while they were here. He was so active and happy. It made my day to see him STILL just being him.

Night time took a little turn. I was working on my chem lab and Spencer had no interest in sleeping. After trying to soothe him, let him exhaust himself, anything I could think of, I just put him in the crib. He was agitated and angry and then, for the first time in his life, he threw up. I just stood there motionless at first and then rang his nurse. We got him cleaned him up, stripped his bed, and I held him until he drifted off. He really seemed fine once he emptied out but it took a toll on me.


I really need to remember to blog day-by-day so I remember things cause Thursday is a little foggy. I know he seemed great in the morning. Bounced back majorly from his night time explosion. During rounds, they decided to give him some morphine again because the general consensus was that he was throwing up or spitting out food from pain, not nausea. An irritation of the mucosal lining of his mouth or throat, probably. Then they let me know that his hemoglobin was low so he was going to receive some blood. My little goofy vampire. It seemed to help because his energy was even MORE jacked up, if that's possible. But this extra energy didn't help with his desire to eat dinner. And it kept him up until midnight.

It was an exhausting day even though so little happened. It's not like at home when he can just gooooo. He's confined to one space so I'm always chasing after him to keep him safe. I'm just complaining because I'm tired. Ignore me.


He seemed to do better with breakfast and lunch. I've discovered that you can't mix foods with him anymore. A change in taste is very common during chemo. It now has to be a few bites of pancakes then a few bites of fruit. No back and forth. As long as he's eating, I don't care. I'll stand on my head if I have to. His numbers are continuing to drop as they should and his platelets are very low...26. He had a few visitors and it was feeling like a low key day until BOOM!! He threw up. Like a frat boy. All over himself and me.

It was in his glasses. It was in my UNDERWEAR, which is still confusing. I was frozen while he cried. We stripped him down and a nurse took over so I could get cleaned up, which has yet to really happen. The room smells like a combo of vomit and bleach. I can still smell it on my skin. And his breath, oh Lord. But the little guy was happy as could be, just hanging out in his diaper. But I just wanted to disappear. Just for a minute, which makes me feel like the worst mother in the world. But he ate a great dinner, we watched cartoons, and we're going to try giving sleeping a shot. Hooray for Lexapro!


Tomorrow I'm going home for TWO WHOLE DAYS. Until Monday morning! I feel bad about leaving Spencer (Todd will be with him) but I've been here the entire time short of 20 hours a week ago. I need to recharge and get my head straight. I'm starting to cry sometimes (this is a NO CRY ZONE) and feel run down and broken (and even feeling that way is bullshit because I'M NOT THE ONE WITH CANCER). But there are fixes. The most important is seeing my baby!!! 2 whole days with Sully!!! I miss him so much, I feel sick. Sleeping in own bed and eating REAL FOOD are also quick fixes. And a margarita during the Oscars won't hurt a thing.

So that's the scoop. Numbers are dropping and still have to pick up before we can go home. Continued thanks for all the support.

Tuesday, February 19, 2013

Team Spencer: Day 3 - 6


Spencer had a lot of visitors on Saturday and we were already starting to get into a routine here (which reminds me, I should order up his lunch). He also had some major discomfort from his central line so we got him an "itty bit" of morphine. My little dude was high as a kite which was both hilarious and horrible. They changed the dressing of his central line and he had a few breathing treatments, like you would for asthma. They thought at the time that his throat was irritated from being intubated. He did NOT like the treatments. He was so agitated during one that the central line leaked a little. There was blood on my hands and his pajamas and I cried for the first time. I was just really overwhelmed. But over all, he was doing pretty well. Behaving just like he would any other day. That's important to us.


Sully can visit twice a week for 3 hours so Todd brought him on Sunday. Spencer was in nap mode when he arrived so he didn't get in any quality playtime. I swear he acted like he didn't know who I was. No big smiles like I'm used to. No goofy moose baby. It hurt. Todd sort of shoved me out the door so of have plenty of time with my baby. I ordered dinner from Carrabba's (the salad dressing I like there stinks like death so it's a solo meal), stopped at my parents and went home.

You know things suck when being at your own house feels like a vacation. And while I missed Spencer, I was so, so happy to be home. I really appreciated my house at that moment. Nothing fancy happened...I ate, watched TV, did homework, and Sully and I had a slumber party in the big bed. It just WASN'T the hospital, which was awesome. I just stood in my room for a minute thinking about how good it felt. I should feel worse for being so happy to be home...


After more morning homework and a bath, for my Porkchop, we headed back to Rainbow. I cried the whooooole way there knowing I'd have to say goodbye to my baby and knowing that this is our life for the next 6-7 months. My replacement has been hired at The Coast and while I'm SO happy for her, I had a plan and it didn't work out. Instead of easing out of a job I've had for 5 years on a scheduled date in May with 6 months of money saved, I'm separated from my baby and husband, not contributing financially, watching my son go through chemo. NOT my plan. Not my life, or so it feels.

Spencer had another breathing treatment while I was gone...they suspected croup, or that he was still irritated from intubation. The boys did get to spend some time together but before I knew it, Todd was packing up and I was sobbing. I was really feeling blue for the first time since we got here. My family came to visit which was nice, but my heart hurt and I was distracted. Spencer was starting to act a little run down (because he's getting CHEMO for CANCER) and I was separated from my baby. AND some low life in Canada stole money from our checking account!! Because it happen in another country (pffffft...Canada), it can take 90 days to get back!! I tried to take a math quiz but bombed. My mind just wasn't in it. All I could focus on was the shit storm I was stuck in.


Today was a busy but exciting day. Today was the last day of chemo in this cycle!! Spencer saw a physical therapist, an occupational therapist, and a music therapist (which he loved). A few groups of medical students came in to learn a few things about his central line which was interesting. Little baby doctors. I felt like I was in a Grey's Anatomy episode. Aunt Potsie visited and brought a monkey and awesome jammies. It was good to see a pal.

But despite all the excitement, I saw some changes for the first time. Spencer had to take more breaks when he was playing, frequently laying his head down, and he had no appetite at dinner time. The nurse said for it being Day 4 of chemo, he had done really well. Kids don't typically throw up much anymore but they do lose their appetites. He had a huge breakfast and lunch so skipping one meal won't hurt right now. Just keeping my eye on things. He stayed up pretty late and put in some serious play time so...we'll see. They just came and unhooked all the chemo but sadly, we don't get to home. We have to wait for his numbers to lower (he should bottom out around Tuesday...which is also when side effects can really start) and come back up. I'm REALLY looking forward to being back home with my whole family together.

It's going to be a long 1-2 weeks...

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!

Wednesday, February 13, 2013

The Beginning: Are We Ready For This?

Today is going to be a long and stressful day so of course when I should be sleeping, I can't. I've been tossing back and forth for a few hours with a really heavy brain. Tonight is the last night Spencer and I will be sleeping at home for about a week. I'll miss my bed. I'll miss having all my things. And God, I'll miss Sully. I've never been away from him yet. Everything aches right now. Everything

I was told by his doctor to get sleep, take care of myself. I can't focus on me. But I know I'm a wreck.

After dropping the Porkchop off at my mom's, my sister (it's good to have another set of ears and eyes, not to mention company), Spencer, and I are heading downtown for appointment after appointment after appointment. And off course, some are in Rainbow and some are in Seidman Cancer Center, which are not exactly right next door to each other. It'll be a lot of zig-zagging and hustling. I'm tired just thinking about it.

The day starts at the Pediatric surgeon's office. They need to look Spencer over for a central line they'll be putting in on Friday so he doesn't have to be poked over and over. I appreciate that. They'll also decide if he'll need a platelet transfusion but I've already been warned that he probably will. The surgeons typically like platelets to be above 75 and at last check, his were around 50. If he needs the transfusion, he'll be admitted tomorrow and have to stay overnight...then overnight again Friday after the central line and bone marrow biopsy...then it begins. But I'm getting ahead of myself.

After the surgeon, we have to race over to the Oncology clinic for his blood draw. This way, by the time we're actually there for his appointment, the labs will be ready and we can dive right into my questions. I've compiled a hearty list.

Once the blood is drawn, we head back to Rainbow for an Echo and an EKG. He had these at birth because he was predisposed to heart issues but they were ruled out. I guess they're just giving it a second look to be sure there are no problems before his surgical procedure and treatment. To be honest, I'm not 100% sure why this is happening. It's on my list.

After this appointment, we head BACK to Seidman for his check-up, to discuss his labs, and to have any questions answered. Like I said, I have plenty. Somewhere in there, we'll have to eat. And then home. It won't be very relaxing because I'm most likely going to have to gather up anything he needs for a week's hospital stay (books, blankies, toys, etc) and anything that I'll need (travel shampoo, clothes, slippers, school work). I wanted to have the iPad all set up but suddenly I've become technologically impaired and can't get it to sync with my phone junk. You're useless, iCloud! So I'll have a lot of junk to do when I get home...and I want as much of that "junk" as possible to be Sully time. I don't want to be away from him. I don't want Spencer to do this. I hate all of this.

This is without a doubt my nightmare come true. I will try to update after all the appointments are finished if I can find the time. Unlikely...unless I can't sleep again.

And I haven't gotten a chance to mention it (I don't think, my mind is mush) but the lovely and talented and amazing Phee-Bizzle (a survivor of stupid cancer herself) started a store full of all the swag you need to be on Team Spencer with proceeds going to him. It's way more about supporting the little guy than it is about money. I'm not worrying about the financial part if this because that's the least important to me right now. Spencer is what's important and seeing so many people get pumped about buying a shirt or whatever to support him is incredible. He's got quite a crew behind him. TEAM SPENCER!

Sunday, February 10, 2013

Chemotions: My 18 Month Old Son Is Starting Chemotherapy

Just the facts.

Friday night, the night after I happily celebrated my birthday with 2 hilarious gals that I love, Spencer's doctor called. After presenting his case to the panel for review, the general consensus among the docs was that Spencer should start treatment. It went from waiting a few weeks-to-months and letting him get bigger and stronger to starting chemotherapy in the upcoming week. It can no longer be avoided. Our nightmare is now real.

A lot of info was thrown into my brain at once but what it boils down to is this:

Wednesday, I'll take Spencer downtown for a blood draw. I'm supposed to have a list of all my questions ready and my sister is going for back-up. It's good to have another set of eyes and ears. Ill be given a basic plan for his treatments, meds he'll be on, side effects, etc. This is when I'll get more info about everything I'm babbling about. I only know what a 10 minute phone call could hold...and honestly, my mind was busy holding my heart together. He'll have an Echo, even though he had one at birth and everything checked out. Then we'll talk to people in the surgical department (I'll get to that in a second).

Thursday, depending on what the blood work shows and what the surgical peeps think, Spencer may have a transfusion of platelets. I know it's a pretty simple procedure but the thought of it scares me. Blood products are freaky. If he has a transfusion, he will stay overnight...and I'll be right there with him.

Friday, Spencer will have a surgical procedure to insert a central line (he was not a candidate for a port due to his size) and they'll do another bone marrow biopsy at the same time. Once again, he'll have to stay overnight and I'll be there, too. Once the central line is in, chemo can start, but I'm not sure if that will be Friday or Saturday. I need to get my facts straight. And we were also told that during some of his treatments, they'll keep him longer than 3-4 days. So I'm not sure how long he'll be in the hospital this time around. I'll know more on Wednesday.

I took this week off work, and most likely next week, too. I wanted Monday and Tuesday to get as far ahead in school as I could, get the house clean, maybe get Spencer's haircut (Todd wants him to have a mohawk and go into this tuff), and just spend time with him and Sully. I don't know what to expect or how he'll feel so really so I'm just trying to prepare for anything. The unknown. I'm going to load up books and movies on the iPad to keep Spencer and myself occupied, buy him some comfy jammies in case he can wear his own, get everything as organized as possibly because we COULD be at the hospital for a week.

One of the worst weeks of my life, no doubt.

People have been overwhelmingly supportive which is amazing. I cant believe how many people bought Team Spencer merch!! I know how lucky we are and I know Spencer will come out of this, no doubt. But it hurts so bad. Every time I see him sitting there being adorable, laughing, smiling, I just can't believe how unfair this is. HE'S JUST A LITTLE BOY. I want to scream but I can't. At least for now, I have to keep my head screwed on. I have to be Mommy and make things as easy for him as I can so I'll have to scream later. More updates after Wednesday.

Thanks again for all the support. Honestly.

Thursday, February 7, 2013

It's My Birthday: A Better Idea Of Things To Come

It's my birthday! And my baby slept through the night in honor of mommy turning 34 (9 hours and counting). But I'll post more about all the birthday madness and shenanigans after the weekend. Right now, I have Spencer information to unload before I forget it all. There's so much to know that it's confusing people. I'm trying to keep it as condensed and easy to digest as possible.

I will first tell you that I'm eating a Brownie Batter donut from Dunkin' and it's life-changing. They're only around for February so don't miss out! Phoebe, because of you, I'm going to gain 300 pounds this month. Sheeesh. Now back to your regularly scheduled Spencer update...

Phoebe and I took Spencer to the Oncology clinic yesterday so they could take a look at his platelets. They've dropped again, from about 67 to 54, but they're not low enough to need a transfusion. WHEW! His infection-fighting white blood cells are actually over 1,000 which they haven't been in weeks so that's a small improvement. Despite a little swelling in his liver, he looks great overall. He always does. Energy is high, no symptoms besides a little bruising, good appetite, and growing. He's gained 2 pounds over the last month. For him, that's awesome!

They are discussing his case in a panel today that they have every Thursday. It's a way to bounce around new cases and get info from other doctors about their experiences. Unless that yields something or the pathologist sees something outrageous, it looks like our plan for now will be as follows:

We're going to continue to go to the clinic every other week for a few weeks. They'll keep monitoring his blood as they have been. He will probably have another bone marrow biopsy in 4 weeks (which is way better than having regular biopsies like we have regular clinic was brought up as an option, YUCK). They want to make sure that the abnormal cells don't miraculously disappear. They said it was still a possibility, but that the chances were very slim. The doctor he spends the most time with said this will officially become Leukemia, it's just a matter of when. It will be AML when it meets the criteria, in case you are curious to read more about that.

Basically, they're giving him a little time. Time to get bigger, stronger, and even a little older. Kids who are a little bit bigger handle treatment better, that just makes sense. And kids who are a little bit older can communicate better (and Spencer already has issues with expressive speech). Even kids who can't talk yet, if they're a little bit older, can point to where there is pain or express that they don't like how their food tastes, etc. They can participate more in the treatment whic is helpful.

And giving Spencer a little time isn't going to hurt anything. Like I've said, it won't affect the type of chemo or the outcome. They said yesterday that this WILL cure him. They don't have any doubts. This type of Leukemia is highly sensitive to the chemo so it gets knocked out. Unfortunately, the treatment is typically 6-7 months. But if there's a good side to ANY of this, he does NOT have to stay in the hospital the whole time like we thought! He'll be admitted for about 3-4 days (or possibly a little longer if there's an issue), and even then, he's not having treatment the WHOLE time. They just keep him there to monitor, deal with pain, discomfort, etc. We then get to go HOME! For 28 days!!!! Then back to the hospital, then home, then hospital...and so on and so on.

This is GREAT news if there was going to be any great news. A few days in the hospital here and there won't disrupt his life (or selfishly, ours) too much. When he's home, if he's feeling up to it, he can continue all this therapies and regular activities. I won't have to worry about not getting to spend time with my Sully Moose or my husband, and I won't miss out on nearly as much work as I had thought! I can continue on with school as planned. And Spencer's life will be able to remain as close to normal as possible which is the MOST IMPORTANT. This is great.

While not being great at all. He's still going to have chemo. He's still going to have cancer! But his team is confident he will be cured. I have to keep reminding myself of that. And while he'll experience side effects (fatigue, nausea, and his hair will most likely fall out...maybe it's time to give him that mohawk), nothing should be permanent. When this is all said and done, he'll just move on with his life. We all will.

While we were there, an Endocrinologist stopped by, helping us eliminate an appointment from his schedule. She said his numbers look great so there's no need to tweak his medications. He's already on what she called "a baby dose, even for a baby", so that's good news, too. His thyroid isn't totally wacky. But as she said, that's the least of his worries.

So that's the update as of now. I'll be waiting for a phone call from his doc after the panel discusses my boy and the pathologist looks at his slide. If nothing dramatic happens, we'll be back at the clinic on the 20th. Tonight I will celebrate with some cocktails and some of my favorite broads at my favorite bar. I know the situation in general doesn't involve celebrating but some of the weight was lifted off my shoulders for sure. And a big thanks to Phee-Bizzle for keeping me company and nudging me to ask some of the questions I had. If I didn't, I wouldn't have gotten the relief that I did!

Monday, February 4, 2013

Temporarily OK: Shutting My Brain Off For a Hot Second

I've been able to shut my brain off a little bit here and there since we got that stupid phone call. I appreciate those moments where I'm not panicking or crumbling more than I can say.

Phoebe came over with mind-blowing partially baked brownies and we shot the breeze.  She mentioned designing some "Team Spencer" and "Leukemia Is Lame" type merchandise and setting up a store with all proceeds going to Spencer. I think that's really amazing and sweet. She's too awesome and you should wish you had a Phoebe in your life.

I also need to give a shout out to the super rad Tiffany Z. Despite her fear of needles, she was inspired by our little dude to order a free bone marrow donation kit. The kit does NOT require any needles (just 4 swabs of the inside of your cheek) but donation would. I think it's amazing how people can rise above their own fears for someone else. Her son went through the same situation when he was Spencer's age and now he's 11 or 12 and totally rad which gives me hope. This donation won't directly affect Spencer but it could easily help someone else in need. If you are at all interested in joining the National Bone Marrow Registry, it just takes a few minutes and is FREE. Check out BE THE MATCH here.

I received another call from Spencer's doc on Thursday night. She was checking up on him...and us...and wanted to schedule more blood work to look at Spencer's platelets again. We're still in Limbo with everything as they haven't decided whether to start treatment now or wait. It was mentioned that he might possibly need another bone marrow biopsy before treatment and my heart just sank into my slippers. All of this still doesn't seem real. But it's back to Rainbow on Wednesday. At least we know Spencer won't start treatment before my birthday. THAT would just be the final kick in the teeth.

I had been doing nothing but studying and worrying all week so Saturday night, I picked up the wife and we went to Yorktown Lanes to hear some music. On a scale of 1-10, I was only about a 5 in terms of sadness because I saw so many friends I hadn't seen in awhile. I always forget how much I like certain people until I see them again. It's always way too far apart for my taste. I had a few drinks, played some Keno, talked to pals, and just had an all-around good time. I STILL have the Clint Eastwood song stuck in my head! It was well worth driving in the snow, even if I didn't dress weather appropriate.

*SIDE NOTE: Jackie Hissem, I wouldn't wear those boots around me again because if you DO, I can't be held responsible if I steal them right off your feet!!!

Yesterday was a shindig at my parents' for all the January and February birthday, and there's a bunch. We had a "make your own pizza" bar and it was AWESOME. Shocking to hear from a person that doesn't like pizza, I know. We started planning a family trip to Washington DC for the summer and I'm really excited. I love to stay in hotels and hang out with my family. We usually go to Disney World so this will be a nice change of pace. It's good to plan ahead. Even with Spencer having treatment, life goes on. We just have to keep planning, living, and moving forward.

And to boost my not-so-horribly-upset-at-the-moment mood, I got tickets to They Might Be Giants on St. Patrick's Day! I was told it was sold out but that information was inaccurate. WEE! HAPPY DAY! And my TMBG Road Crew jacked just happens to be green. I'm just saying. I'm actually Irish so...I feel the need to be stupid and wear green and whatnot. But this happiness is not without a small cloud of doom: I did NOT get tickets to Hall and Oates. I didn't even know they were coming and it's sold out. Boo. Hiss.

Thursday is my birthday (the big 34 which doesn't sound as good as 33 and isn't as milestone-y as 35) and I'm going to try and make the most of it. Circumstances surrounding, it's not going to be the best birthday ever by any means. But Todd is making me dinner tonight, I'm going to PJs with the wife on the actual day (since Todd gets up at 3:30am for work and subsequently goes to bed early, I didn't want to sit home), and the hubby and I are going to do some damage at Dave and Buster's this weekend. Like I said, I'm making the most of it.

But first I need to ace an A&P exam, take an Inorganic Chemistry quiz, and prep for an Algebra test. Pepper that with homework, discussions, and assignments and I'm going to NEED birthday weekend just to ice this brain.

Have a good week, y'all.