I was really hoping to report back with some uplifting news about Fionny. I know my last post was so negative. Unfortunately, we're still in the trenches over here, folks. Despite stopping the steroids last night, Fionny has been in pain today which has just been pretty heartbreaking to witness. We have been so lucky so far in this fight. Since that first terrible month, Fionn has not been in hardly any pain. He feels pretty good most of the time, even when his counts are really low. People have often commented on how well we are handling everything with Fionny, and I always say that it would be a completely different ballgame if he was in pain. Well, now he's in pain. And boy was I was right. This feels a helluva lot harder.
The day started out okay. Today was a short day at clinic. No chemo this week, no procedures. Just vitals, a counts check, and a quick doctor check-in. Fionn's ANC is at 70 which is higher than his ANC of 6 last week, but the doc told us to prepare that Fionn's counts could bottom out again before making a real recovery. We were told to expect that he will probably not make counts next week and maybe not even the week after that. It is very typical for patients to take awhile to recover after the onslaught of chemo Fionn received over the past month.
Fionn seemed to feel okay immediately after clinic, but on the way home he started to complain about stomach pain. The nurse I spoke with at the clinic believes that it's probably just constipation which is a fun side effect of chemo. I gave him some medicine (laxative and stomach ulcer medicine) that will hopefully provide some relief.
In the meantime, this evening Fionn also began having some neuropathy in his legs. Neuropathy, for those of you who are unfamiliar with the term, is basically that feeling of pins and needles you might get in your feet when they "fall asleep." Only I'm guessing, judging by Fionn's reaction, that it is way worse for a cancer patient. Another fun side effect of chemo. Fionn has had neuropathy a couple of other times in this journey. Thankfully, it has never lasted more than a day. Fingers crossed that it won't stick around too long this time either. As it is now, our Fionny doesn't want to walk because it hurts too much, so we are carrying him everywhere. He also doesn't want to eat because his stomach hurts. We ordered one of his favorites, Chinese food, for dinner but he just wanted to go to bed. What a difference a day makes, right? Conor and I both laid in bed with him for awhile tonight (Conor is still in there now). The last thing he said before he fell asleep was, "Mommy, I just don't feel well." I know this will blow your mind, but that is probably only the second time he has ever complained about not feeling well since we completed the Induction phase last July. We have been so lucky. So very lucky.
Can I continue the Bummer Parade a bit? Fionny is also losing his hair again. We knew it would happen during this phase; it was just a matter of time. I noticed a few stray hairs over the weekend when I would run my hands through his hair. Well, now it's coming out fast. Little blond hairs everywhere. We need to shave his head again. Planned to do it again tonight, but it wasn't in the cards. Maybe tomorrow. I have to remind myself that Fionny looked so handsome and adorable with a bald head because I am definitely feeling sad about him being bald again. The biggest thing for me is that it will mean that he looks sick again. It's like a huge calling card that reads, "My kid is not healthy." Because healthy kids have hair. The stares and sympathetic looks from strangers will resume. Fionny will once again stand apart from all the other kids on the playground and in school. Man, I hate that. I just want him to be a regular kid. When does he just get to be a regular kid again?
There is a light at the end of the tunnel though. It's there. I can squint and see it. I really can. Once we make counts again (which will hopefully happen sometime in January), we are in the home stretch. No more "making counts" after that. We just whiz through the remaining 35 days of this phase, and then we are in Maintenance. Where we can hopefully breathe a lot easier.
Alright, now that you're good and depressed, I think my job here is done. Ha. In all seriousness, I hope my next post is a happier one. I feel sure that it will be. After all, we are heading into a whole new year. Boy, are we ready for a new year over here at the Crimmins House.
Adios, 2014, you sonofabitch. Don't let the door hit you on the way out.
Monday, December 29, 2014
Thursday, December 25, 2014
Scrooged
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| This is your Christmas on steroids. Any questions? |
Yesterday (Christmas Eve) we took a family walk around the neighborhood. It's become a tradition in our family on Christmas Eve to bake cookies and then hand them out to neighbors we pass on the street that afternoon. It's been a great way to spread holiday cheer and also meet some new people. (Side note: Brookland was way more receptive to our cookie-giving experience than Kensington. We got work to do, Kensington.)
In the past, Fionn has loved this activity. He would run up to strangers and say, "Merry Christmas! Would you like a Christmas cookie?" It was pretty adorable. This time he just wanted to sit in the stroller. See the above picture for the expression he wore during the entire stroller ride. So Conor and I ended up being the ones to ask strangers if they wanted a cookie. Hmm...maybe that was the crux of the problem. Might seem a little sketchy to be offered a cookie by a random couple of adults. Duly noted.
Anyway, it was a bust as you might imagine. Well, not a total bust. At least this little guy enjoyed himself.
Dex, although still a total handful, has definitely brought his A game this Christmas. He has been sweet and happy for the most part. Thank you, God. It's almost like he knows we can't handle anything else right now.
This morning, when Fionn woke up, he wanted to go straight to the breakfast table. No interest in Santa or presents or the like. He just wanted food. And not just any food. Corn dogs. It's his latest food craving. We tried to limit him to one corn dog a day. That lasted for about 24 hours. It's just not worth it to fight that fight, people. He wants a corn dog. Nothing else will do. The kid will have a corn dog. With a side of chicken noodle soup. Yep, that happened.
After eating, Fionn usually just wants to lie down. This is how we found him several times today. We keep telling him to move to the couch, but back to the chairs he returns. Every single time.
Throughout the day, there were short bursts of energy and playfulness from Fionn. Such as this wonderful moment when we took Fionn's new remote control helicopter outside to fly it for the first time. It was his ring bearer gift from cousin Karen.
The smile on his face, the way he giggled...it was so wonderful to see. It tells us that he has not disappeared from us completely. It's just the medicine. It's just the medicine.
But it's hard. Just like last time, it's hard to trust that our Fionn is still in there somewhere. It's hard when our kid, who has been begging for a bow and arrow from Santa Claus for months, takes one turn at his new toy and then says that he just wants to lie down. It's hard when our little boy, who just last week was telling us that he loved us more than the sun, the moon, and the stars, tells me yesterday, "I don't like you, and I don't love you." It's hard when our son doesn't want to be touched, and yet he doesn't want me to leave his side. It's hard when our Fionny who loves Christmas seems completely disinterested in everything about it and just wants to watch TV.
Yep, in short, steroids suck. Thankfully, we only have 3 more days before we can stop them again for the remainder of this phase. And then hopefully we will get our boy back. Because oh how we miss him.
I hope I don't sound ungrateful. At the end of the day, we got to spend Christmas at home this year. Together. As a family. This was something we weren't sure we would be able to do. And for that, we are immensely thankful.
Merry Christmas to all of our friends and family. We love you so much!
Memphis Belle
Every single time I attend a wedding, I think, This is the most beautiful bride in the history of weddings. No one could look more beautiful than this bride right here, right now. Then I attend the next wedding, and I think the same thing. Well, this past weekend was no exception. My cousin, Karen, looked exquisite at her wedding and every event leading up to the wedding too. I don't have a picture of the beautiful bride on her special day (which is a shame because her dress was her mother's from 35 years ago -- classic and gorgeous). However, I do have this pic of Karen and her new husband, Douglas from the rehearsal dinner the night before. Their happiness just radiated.
As for Mr. Studly Pants...well, he looked pretty snazzy as well.
Yes, our boy did his job, and he did it well. Although he complained about the tux as we stuffed him into it a few hours before the wedding, once we arrived at the church he snapped into Business Mode. I think the beautiful bride and bridesmaids helped matters. As y'all know, our son is already quite the ladies man. A few comments about how cute he looked from a bunch of pretty girls, and he was putty. Putty.
Of course, I have to tell you a little bit more about the weekend leading up to the wedding. Because it was almost a no-go for our boy. More on that in a bit.
After a fun-filled flight to Memphis (boy, 18-months is a delightful age to fly with a child!), we arrived at our destination. We immediately hit up the Rendezvous for some BBQ and then headed back to the room for a long nap for, as it turned out, ALL my boys. After the nap, we headed to the rehearsal at the absolutely gorgeous Catholic church, St. Peter's. On the way to the church, Fionny was basically being a malcontent. Complaining about everything. (We should have known something was wrong then, I suppose.) However, as soon as he arrived to the church and saw this beautiful lady...well, the rest was history.
After the rehearsal, we dumped Fionn back at the hotel with a sitter that was kindly provided for us by Karen and headed out to the rehearsal dinner which was at the Cotton Museum. Conor grabbed a lot of great shots of the guests, but here is one of my favorites of Karen's younger brother, Lee, and his girlfriend, Morgan. Very photogenic pair.
The next morning there was a lovely wedding day brunch at the Madison Hotel. Yummy food, wonderful family everywhere. And these two munchkins. I dressed them completely alike (on purpose) for the first time. White button-downs and cords. Oh, it won't be the last time, folks. They looked adorbs!
While at the brunch, Karen presented the hosts of the brunch (which included my dad and most of his siblings, as well as a bunch of my older cousins) with a special host gift. In lieu of a present, Karen and Douglas donated money to Make-A-Wish for each person in honor of Fionn. It was such a touching, thoughtful tribute to our boy. We love you, Karen!
While at the brunch, we noticed that Fionny felt a little warm. I stupidly left the thermometer back at the room, so Conor ran to the CVS across the street and bought one. Sure enough, Fionn's temperature was elevated. Not terrible yet. I think it was 99.7. But for Fionny...that is telling. When healthy, our boy tends to run a bit on the cold side just like me.
So suddenly, we were at high alert. We took the boys back to the room for nap, all the while wondering if we were going to be checking in at the hospital that night instead of the church. Sure enough, Fionn awoke with a higher temperature. This one was officially a low grade (anything from 100.4-100.9 is low-grade). We notified Dad and Julie that we might be heading into the hospital in the next hour if Fionn clocked another low-grade. For a cancer patient, two low-grade fevers in the course of an hour is considered a full-blown fever.
The next hour felt like an eternity. Finally it was time to take his temperature again. We held our breath and stuck the thermometer under his tongue.
100.3. Whew. Just barely under the cutoff. Although we were still concerned about Fionn, we could proceed to the wedding as planned. We dropped Dex off with the babysitter (thanks, Ashley Clark, for the recommendation!) and headed to the lobby. Conor went to get the car while Fionn and I waited. Suddenly, Fionn burst into tears. "Mama, I just pooped in my pants!"
Oh Jesus. Poop. In his little tux pants. And we were scheduled to be at the church for pictures in 10 minutes.
We raced back to the room, washed out the pants with some soap and turned on the blow dryer. My sweet boy who kept apologizing (which broke my heart) sat on the floor with the blow dryer, running it up and down the legs of his pants. "Hmm...I think it needs a little more," he would say and continue blow drying. Ah, that kid. Not sure I've ever loved him more than in that moment.
Now I'd like to be able to blame the pooping incident on some chemo side effect, but to be honest, it was bad parenting. I let Fionny pound 2 truffles from the wedding gift bag right before heading out that night. My bad.
Anyway, all's well that ends well. We arrived to the church just as Fionny was needed for pictures. We sprayed him down with Febreeze (ah, Meadows and Rain) so any lingering smell wouldn't offend the wedding guests. And the rest is history. Our boy did great. It helped that he was stationed right behind Karen's older sister, Tyndale, who was the maid of honor. Tyndale is great with kids (and really just great with everybody, such a people person), and Fionn felt right at home. He even told Conor to hit the road. "Dada, I know what I'm doing. You can go sit down now." Alrighty then.
I have to say that watching my little man walk down the aisle in his tux with the most adorable smile on his face (it was more of an open-mouthed look of wonderment) was a moment I will never forget. Thank you, Karen and Douglas, for giving us that moment. We were so honored to be included.
Once Fionny finished his "job" as we kept calling it, he was allowed to come and sit with us in the pew. He did fine for about...oh, 20 minutes. Then he started asking questions (loudly). My favorite was "What are they doin'?" as Karen and Douglas recited their holy wedding vows. Thankfully, the wedding planner told us about the nursery downstairs and said that we should feel free to hit it up at any time. So Conor and Fionny did just that. And I enjoyed the peaceful remainder of the beautiful wedding. Thank you, Conor.
After the wedding, we headed to the reception at The Columns. We had every intention of partying down for a bit. But it wasn't meant to be. Our boy was tired. And he actually said so which, as every parent of a 4-year-old child knows, is very telling. Conor offered to take him back to the room so that I could stay at the reception for a bit. Sweet offer. And I considered it for a minute. But ultimately, the day had taken its toll. I was wiped. So we all headed back to the room for what was thankfully a great night of sleep.
The next day we spent some time in the Peabody Hotel before heading to the airport. The Peabody Hotel is truly a gorgeous old hotel, and it never looks prettier than at Christmas. The huge Christmas tree was just begging for a family pic in front of it, so we obliged.
We also watched the Peabody ducks walk from their home on the roof down to the fountain in the lobby where they would spend their day. For anyone who hasn't seen this, definitely check it out if you are ever in Memphis. It is something special to behold. Fionny loved it. It was especially fun to watch on Sunday too because Douglas and Karen were Honorary Duckmasters that day.
After the ducks, we headed to lunch and then to the airport. It was a wonderful weekend, but boy...we were ready to get home. Traveling with Fionny right now is just a little too stressful, methinks. Hopefully the Spring will bring Maintenance into our lives, and travel will once again seem do-able. But for now...for now we are just happy to be at home.
Speaking of which, we are thrilled that we have been able to spend Christmas at home with our boys. I'll write again later today or tomorrow with an update on our holiday. Right now, Conor and I are enjoying some quiet time in the kitchen, listening to Christmas music, before the boys wake up. Merry Christmas, Everybody. Wishing a happy holiday to you and your kin.
As for Mr. Studly Pants...well, he looked pretty snazzy as well.
Yes, our boy did his job, and he did it well. Although he complained about the tux as we stuffed him into it a few hours before the wedding, once we arrived at the church he snapped into Business Mode. I think the beautiful bride and bridesmaids helped matters. As y'all know, our son is already quite the ladies man. A few comments about how cute he looked from a bunch of pretty girls, and he was putty. Putty.
Of course, I have to tell you a little bit more about the weekend leading up to the wedding. Because it was almost a no-go for our boy. More on that in a bit.
After a fun-filled flight to Memphis (boy, 18-months is a delightful age to fly with a child!), we arrived at our destination. We immediately hit up the Rendezvous for some BBQ and then headed back to the room for a long nap for, as it turned out, ALL my boys. After the nap, we headed to the rehearsal at the absolutely gorgeous Catholic church, St. Peter's. On the way to the church, Fionny was basically being a malcontent. Complaining about everything. (We should have known something was wrong then, I suppose.) However, as soon as he arrived to the church and saw this beautiful lady...well, the rest was history.
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| Fionny and the bride, Karen. |
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| Fionny practicing his walk down the aisle. |
The next morning there was a lovely wedding day brunch at the Madison Hotel. Yummy food, wonderful family everywhere. And these two munchkins. I dressed them completely alike (on purpose) for the first time. White button-downs and cords. Oh, it won't be the last time, folks. They looked adorbs!
While at the brunch, Karen presented the hosts of the brunch (which included my dad and most of his siblings, as well as a bunch of my older cousins) with a special host gift. In lieu of a present, Karen and Douglas donated money to Make-A-Wish for each person in honor of Fionn. It was such a touching, thoughtful tribute to our boy. We love you, Karen!
While at the brunch, we noticed that Fionny felt a little warm. I stupidly left the thermometer back at the room, so Conor ran to the CVS across the street and bought one. Sure enough, Fionn's temperature was elevated. Not terrible yet. I think it was 99.7. But for Fionny...that is telling. When healthy, our boy tends to run a bit on the cold side just like me.
So suddenly, we were at high alert. We took the boys back to the room for nap, all the while wondering if we were going to be checking in at the hospital that night instead of the church. Sure enough, Fionn awoke with a higher temperature. This one was officially a low grade (anything from 100.4-100.9 is low-grade). We notified Dad and Julie that we might be heading into the hospital in the next hour if Fionn clocked another low-grade. For a cancer patient, two low-grade fevers in the course of an hour is considered a full-blown fever.
The next hour felt like an eternity. Finally it was time to take his temperature again. We held our breath and stuck the thermometer under his tongue.
100.3. Whew. Just barely under the cutoff. Although we were still concerned about Fionn, we could proceed to the wedding as planned. We dropped Dex off with the babysitter (thanks, Ashley Clark, for the recommendation!) and headed to the lobby. Conor went to get the car while Fionn and I waited. Suddenly, Fionn burst into tears. "Mama, I just pooped in my pants!"
Oh Jesus. Poop. In his little tux pants. And we were scheduled to be at the church for pictures in 10 minutes.
We raced back to the room, washed out the pants with some soap and turned on the blow dryer. My sweet boy who kept apologizing (which broke my heart) sat on the floor with the blow dryer, running it up and down the legs of his pants. "Hmm...I think it needs a little more," he would say and continue blow drying. Ah, that kid. Not sure I've ever loved him more than in that moment.
Now I'd like to be able to blame the pooping incident on some chemo side effect, but to be honest, it was bad parenting. I let Fionny pound 2 truffles from the wedding gift bag right before heading out that night. My bad.
Anyway, all's well that ends well. We arrived to the church just as Fionny was needed for pictures. We sprayed him down with Febreeze (ah, Meadows and Rain) so any lingering smell wouldn't offend the wedding guests. And the rest is history. Our boy did great. It helped that he was stationed right behind Karen's older sister, Tyndale, who was the maid of honor. Tyndale is great with kids (and really just great with everybody, such a people person), and Fionn felt right at home. He even told Conor to hit the road. "Dada, I know what I'm doing. You can go sit down now." Alrighty then.
I have to say that watching my little man walk down the aisle in his tux with the most adorable smile on his face (it was more of an open-mouthed look of wonderment) was a moment I will never forget. Thank you, Karen and Douglas, for giving us that moment. We were so honored to be included.
Once Fionny finished his "job" as we kept calling it, he was allowed to come and sit with us in the pew. He did fine for about...oh, 20 minutes. Then he started asking questions (loudly). My favorite was "What are they doin'?" as Karen and Douglas recited their holy wedding vows. Thankfully, the wedding planner told us about the nursery downstairs and said that we should feel free to hit it up at any time. So Conor and Fionny did just that. And I enjoyed the peaceful remainder of the beautiful wedding. Thank you, Conor.
After the wedding, we headed to the reception at The Columns. We had every intention of partying down for a bit. But it wasn't meant to be. Our boy was tired. And he actually said so which, as every parent of a 4-year-old child knows, is very telling. Conor offered to take him back to the room so that I could stay at the reception for a bit. Sweet offer. And I considered it for a minute. But ultimately, the day had taken its toll. I was wiped. So we all headed back to the room for what was thankfully a great night of sleep.
The next day we spent some time in the Peabody Hotel before heading to the airport. The Peabody Hotel is truly a gorgeous old hotel, and it never looks prettier than at Christmas. The huge Christmas tree was just begging for a family pic in front of it, so we obliged.
We also watched the Peabody ducks walk from their home on the roof down to the fountain in the lobby where they would spend their day. For anyone who hasn't seen this, definitely check it out if you are ever in Memphis. It is something special to behold. Fionny loved it. It was especially fun to watch on Sunday too because Douglas and Karen were Honorary Duckmasters that day.
After the ducks, we headed to lunch and then to the airport. It was a wonderful weekend, but boy...we were ready to get home. Traveling with Fionny right now is just a little too stressful, methinks. Hopefully the Spring will bring Maintenance into our lives, and travel will once again seem do-able. But for now...for now we are just happy to be at home.
Speaking of which, we are thrilled that we have been able to spend Christmas at home with our boys. I'll write again later today or tomorrow with an update on our holiday. Right now, Conor and I are enjoying some quiet time in the kitchen, listening to Christmas music, before the boys wake up. Merry Christmas, Everybody. Wishing a happy holiday to you and your kin.
Monday, December 22, 2014
Rapid Descent
Hey folks. I will write more later about our wonderful weekend in Memphis at my cousin Karen's wedding, but for now...just a quick post. I know a lot of you think about our Fionny on Mondays and worry about how he is doing. So I wanted to give a little update.
Today at clinic we learned that Fionn's ANC right now is 6. As in...just 6. That's pretty darn low, folks. Scarily low. It's totally expected as a result of the chemo, but I suppose it happened a little sooner than I expected. Fionn is also sporting a pretty nasty cough right now. He's had it for a couple of weeks. Today it sounds worse. The combination of the low ANC and the cough puts us squarely in the realm of...well, possibly spending Christmas in the hospital. One significant fever (or two low-grade fevers over the course of 1 hour), and we immediately get admitted to the hospital due to Fionn's low numbers. Although Fionn's temp right now is totally normal, he had a few elevated fevers over the weekend (more on that in my next post), so we are a bit on pins and needles over here.
As a result, we have wiped our dancing card clean for this week. We had a lot of plans with friends, and we were looking so forward these gatherings. But we simply can't risk it with Fionn's low ANC. Damn cold and flu season. It is really making our life especially difficult right now.
Keep your fingers crossed for us that we remain fever-free for the rest of the week! We would so love to wake up together as a family in our new home on Christmas Day!
I'll close with a picture of Fionny at clinic this morning. All the kids got to pick out a gift from an assortment of donated toys. Fionny picked out a couple of sharks, a scuba diver, and a shark cage. I'm sure it will fuel a new obsession with underwater adventures. I'll write again soon.
Today at clinic we learned that Fionn's ANC right now is 6. As in...just 6. That's pretty darn low, folks. Scarily low. It's totally expected as a result of the chemo, but I suppose it happened a little sooner than I expected. Fionn is also sporting a pretty nasty cough right now. He's had it for a couple of weeks. Today it sounds worse. The combination of the low ANC and the cough puts us squarely in the realm of...well, possibly spending Christmas in the hospital. One significant fever (or two low-grade fevers over the course of 1 hour), and we immediately get admitted to the hospital due to Fionn's low numbers. Although Fionn's temp right now is totally normal, he had a few elevated fevers over the weekend (more on that in my next post), so we are a bit on pins and needles over here.
As a result, we have wiped our dancing card clean for this week. We had a lot of plans with friends, and we were looking so forward these gatherings. But we simply can't risk it with Fionn's low ANC. Damn cold and flu season. It is really making our life especially difficult right now.
Keep your fingers crossed for us that we remain fever-free for the rest of the week! We would so love to wake up together as a family in our new home on Christmas Day!
I'll close with a picture of Fionny at clinic this morning. All the kids got to pick out a gift from an assortment of donated toys. Fionny picked out a couple of sharks, a scuba diver, and a shark cage. I'm sure it will fuel a new obsession with underwater adventures. I'll write again soon.
Thursday, December 18, 2014
No More Mr. Nice Dex
Do not be fooled. This child is the devil incarnate. Otherwise known as A Toddler.
I guess all good things have to come to an end. My sweet, sweet Deaglan is no more. Well, sometimes he's still sweet. Such as when he's sleeping. But when he's awake, he is hell on wheels. Or little chubby legs, as the case may be.
Here's what is happening these days at our house. Deaglan wakes up in the morning. After a few minutes of cuteness where he seems like the Old Deaglan, my darling child zeros in on something that he can't have. Usually this involves water (toilet, sink, my glass, you get the picture) or technology (my phone, computer, remote control to the TV, you get the picture). I say "no." Then several things happen.
a) Deaglan gives out a Tarzan-like cry of protest.
b) Deaglan continues to try to get the thing he wants. Over and over and over again.
c) I pick Deaglan up to take him away from said item. He begins to buck in my arms.
d) Deaglan head-butts me.
e) I (obviously) put Deaglan down.
f) Deaglan begins to throw things at my head. Hard things. Like his pretend pots and pans (why did I insist on real metal ones again?).
g) I doubt my abilities as a mother and wonder how much longer until I can have a beer. (It's the morning, so this answer is usually very depressing).
What on earth, people? I mean, Fionn was hard. Still is hard a lot of the time. But this? This is something special. Deaglan is so much more focused on things than Fionny ever was. He does NOT give up! I actually admire it when it's not annoying the heck out of me. He is also so much more emotional. He just loses his shit at the drop of a hat. Fionny was deviant. Fionny didn't listen. Fionny destroyed any space he occupied. But he wasn't emotional.
This child is obviously mine. Darn it.
Yesterday was actually a little bit better. Same behaviors, but I feel like I handled it a bit better. That's the main thing. My reactions have been bad. I need to get a grip. Wish me luck down this new and fun parenting journey, friends!
Meanwhile, Fionny continues to be an angel most of the time. He is pure joy right now, people. Why couldn't he and Dex have gotten together on this one? Speaking of Fionny, his numbers were great on Monday. He hasn't begun to bottom-out yet in terms of his counts, so we should be good to go for our trip tomorrow. Here is a sneak peak of Fionny the Ring Bearer.
I mean, c'mon. Get a load of my little stud. By the way, I got him to put the outfit on by telling him that his little girlfriend at school would like to see a picture of him in his tux. I am toast, people. Toast.
Have a great weekend! I'll update with a wedding report next week.
Monday, December 15, 2014
Perks
Although we would trade them in a heartbeat for a clean bill of health for Fionny, there are certain perks that can come with having a kid with cancer. Such as meeting the President of the United States and the First Family.
About a month ago, we received a phone call from Children's Hospital. They said that Fionny had been nominated by some of the nurses to be an elf in the annual Christmas in Washington show at the National Building Museum. The President and First Family would be in attendance along with other celebrities. Did we want to do it?
Well, that was that was the easiest question of my life to answer (besides, of course, "Will you marry me?" back in 2006.). Where do we sign?
The whole thing was very hush-hush due to security concerns. We were told not to tell anyone about it. This was SO hard for me, people! Finally, last Saturday, an elf costume and 3 tickets arrived to our house via courier. Three tickets, you say? Yep, we decided against bringing The Hellion...er, Deaglan. He has been especially nightmarish lately. But that is fodder for another post.
Once yesterday afternoon arrived, we got The Kid all gussied up, cleaned ourselves up a bit too and headed out.
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| Thanks, Ashley O'Reilly, for lending me the dress -- gold for cancer awareness! |
The show itself was great. It was hosted by Dwayne "The Rock" Johnson. There were performances by Darius Rucker (Hootie!), Rita Ora, and Christina Perry, among others. There were a few famous folks in the audience too. For example, I looked at the back of Newt Gringrich's head the whole time. His wife's too. Man, she has one coiffed 'do! And I also saw some familiar-looking actor guy who had a part on House of Cards. Oh, and Candy Crowley from CNN.
At the beginning of the show, they marched the elves out onto the stage where they huddled in a little cluster. Apparently, five minutes before the show started, Fionn started to cry and ask for his mommy and daddy (Conor had joined me in the audience by this time). The Elf Handler did a good job of...well, handling him. By the time Fionn was up on stage, his eyes were dry. He did kind of hang out toward the back of the pack though as if he wasn't sure about the whole thing. Conor and I tried to stand up a bit and wave to him without being completely uncouth. And he saw us! We saw him mouth, "Mama" and smile. It was very cute.
Thankfully, the elves were only up there long enough to get introduced, and then they hustled them off the stage. Fionn joined us for the rest of the performance. During the rest of the hour-long show, he alternated between watching the show with little interest and lying across our laps, face down with his booty in the air. That should make for good television. Speaking of which, the show will be televised on Friday, December 19, at 8 pm on TNT. We won't actually get to watch it because we will be partying down at my dear cousin's rehearsal dinner that night. Someone tape it for us!! Please!
After the show, we hit up the reception for about an hour. The food was pretty good, but the highlight was really the Balloon Guy who made Fionn a bow and arrow out of balloons. Very cool. So cool in fact that I am pretty sure it made a bigger impact than the Commander-in-Chief.
.JPG) |
| Obama definitely didn't get a smile that big. |
It
was a super-special night, and we were honored to be part of it. I
don't think Fionn realizes the importance of meeting the President now,
but someday he will. Until then, we will hold the memory for him. It
was truly amazing.
We
are back at clinic today so Fionn can receive more chemo and also get
his counts checked. We are hoping that everything looks great so that
we can feel 100% secure in our decision to attend Karen's wedding in
Memphis this weekend. Fionn is going to be the ring bearer! Another exciting event! Epic month for this kid of ours. Until next time.
Friday, December 12, 2014
Back Again
Hey folks! I am here with Fionn in the clinic for our second day of chemo this week. We don't usually have the pleasure of visiting the clinic twice in one week, but this week is a special treat, I guess. Today Fionn will receive PEG-asparaginase, an infusion of chemo that should take about 2 hours to run. Then we hydrate for another hour before we are free to go. So a "short" day in our clinic world.
So far, Fionn has been doing great in Phase 4. I was very nervous about the steroids that we started on Monday (and will continue through Sunday). During the Induction Phase, Fionn had a whole month of steroids, and it was not fun. He was incredibly moody and cranky, lethargic, hungry constantly. Just completely devoid of his vibrant personality. It was so hard to see him like that. I remember fearing that maybe our Fionn was lost to us forever. It was just so difficult to see past where we were at that time. Hard to trust that it was the medicine and not some permanent shift in our reality.
None of that has been present this time around. Perhaps Fionn has been the tiniest bit more hungry and slightly more tired, but it has been nothing too drastic. And his personality has definitely been intact. If anything, he has been sweeter than usual. Just the other day while we were cuddling before naptime, he told me, "I love you more than the moon, the stars, and the sun, Mommy." Cue heart melting. He also keeps telling Conor and me that we are the best mommy and best daddy EVER. He actually says, "I picked the best mommy and best daddy ever!" (He also gives himself credit for choosing the best little brother and best kitty ever).
Sigh. It's been one of those weeks when it seems like the love I have for this child is just too strong to contain. Like it's going to well up inside of my chest, travel up through my throat, and just burst out of my mouth as a fiery ball of pure love. I can't squeeze him enough, kiss him enough. I could look at his little precious face for hours.
To be honest, I've just been altogether more emotional lately. Maybe it's the Christmas music. It certainly doesn't help matters, that's for sure. Don't get me wrong. I love Christmas music. But we all know it has a way of bringing one's emotions to the surface. It's a little manipulative that way if you ask me. I've got your number, Bing Crosby. You sly little fox.
So maybe it's partly the music. But it's also these children. Not mine. Well, not just mine. These other children I have come to know through oncology clinic and Facebook. Isla, Sully, Kian, Hayden, Juan. Most recently, Miller.
Some of them I have gotten to know over the past 6 months at Children's. Others I have never laid eyes on. But they all have something in common. They are all fighting for their lives. And they are children. It's just wrong. It doesn't make sense. And I'm starting to get angry about it.
A little girl died on Monday here at Children's. She was 6. I didn't know her. Not really anyway. I think I saw her dancing down the halls with her IV pole once a few months ago. By all accounts, she was a little dynamo with an electric personality. Not unlike our Fionny. She had a different type of cancer, a harder one to cure. At least that's what Fionn's doctor said on Monday when she saw me crying on the phone to Conor about it. She thought I was crying out of fear for Fionny. And perhaps there was a little of that behind my tears, but that wasn't really it. I was crying for the little girl's family and everyone who loved her. A little girl whose family left Children's Hospital on Monday without their child. I cannot imagine the grief. No, that's not true. I can imagine the grief. It haunts me and visits me in my nightmares (and sometimes my wayward thoughts during the day too). There is nothing -- nothing -- more terrible than the loss of a child. Nothing. And it simply shouldn't happen. Why don't we know why this happens? Why don't we have a cure? It just eats me alive sometimes. Why, why, why?
Most of you already know this, but childhood cancer is terribly underfunded. It receives only 4% of US federal funding for research. The excuse for this is often that childhood cancer is so "rare." But in actuality, cancer kills more children every year than any other disease. There is a 1 in 285 chance that any given child will get diagnosed with cancer by the age of 20. 13, 500 children get diagnosed every year. Every year, folks. Approximately 35, 000 children are currently in treatment. Fionny is just one of them.
I don't mean to scare you, but in other ways...I guess I kinda do. Something has to be done about this. More research has to happen. I know it's that time of year when people start thinking about how to give back to others, how to make a difference. There are so many worthwhile organizations and issues. So very many. Please know that I'm not asking you NOT to give to those organizations. I ask only that you remember Childhood Cancer too when you think about how to help. There are many ways to donate toward pediatric cancer research. Here is just one:
http://www.childrenscancer.org/
Okay, I'll get off my soapbox now! I will close with a picture of my little warrior. Argh! A Merry Christmas to you all!
.JPG)
So far, Fionn has been doing great in Phase 4. I was very nervous about the steroids that we started on Monday (and will continue through Sunday). During the Induction Phase, Fionn had a whole month of steroids, and it was not fun. He was incredibly moody and cranky, lethargic, hungry constantly. Just completely devoid of his vibrant personality. It was so hard to see him like that. I remember fearing that maybe our Fionn was lost to us forever. It was just so difficult to see past where we were at that time. Hard to trust that it was the medicine and not some permanent shift in our reality.
None of that has been present this time around. Perhaps Fionn has been the tiniest bit more hungry and slightly more tired, but it has been nothing too drastic. And his personality has definitely been intact. If anything, he has been sweeter than usual. Just the other day while we were cuddling before naptime, he told me, "I love you more than the moon, the stars, and the sun, Mommy." Cue heart melting. He also keeps telling Conor and me that we are the best mommy and best daddy EVER. He actually says, "I picked the best mommy and best daddy ever!" (He also gives himself credit for choosing the best little brother and best kitty ever).
 |
| "I made this just for you, Mommy!" (read: He stuck two ornaments on our little Charlie Brown Christmas tree) |
To be honest, I've just been altogether more emotional lately. Maybe it's the Christmas music. It certainly doesn't help matters, that's for sure. Don't get me wrong. I love Christmas music. But we all know it has a way of bringing one's emotions to the surface. It's a little manipulative that way if you ask me. I've got your number, Bing Crosby. You sly little fox.
So maybe it's partly the music. But it's also these children. Not mine. Well, not just mine. These other children I have come to know through oncology clinic and Facebook. Isla, Sully, Kian, Hayden, Juan. Most recently, Miller.
Some of them I have gotten to know over the past 6 months at Children's. Others I have never laid eyes on. But they all have something in common. They are all fighting for their lives. And they are children. It's just wrong. It doesn't make sense. And I'm starting to get angry about it.
A little girl died on Monday here at Children's. She was 6. I didn't know her. Not really anyway. I think I saw her dancing down the halls with her IV pole once a few months ago. By all accounts, she was a little dynamo with an electric personality. Not unlike our Fionny. She had a different type of cancer, a harder one to cure. At least that's what Fionn's doctor said on Monday when she saw me crying on the phone to Conor about it. She thought I was crying out of fear for Fionny. And perhaps there was a little of that behind my tears, but that wasn't really it. I was crying for the little girl's family and everyone who loved her. A little girl whose family left Children's Hospital on Monday without their child. I cannot imagine the grief. No, that's not true. I can imagine the grief. It haunts me and visits me in my nightmares (and sometimes my wayward thoughts during the day too). There is nothing -- nothing -- more terrible than the loss of a child. Nothing. And it simply shouldn't happen. Why don't we know why this happens? Why don't we have a cure? It just eats me alive sometimes. Why, why, why?
Most of you already know this, but childhood cancer is terribly underfunded. It receives only 4% of US federal funding for research. The excuse for this is often that childhood cancer is so "rare." But in actuality, cancer kills more children every year than any other disease. There is a 1 in 285 chance that any given child will get diagnosed with cancer by the age of 20. 13, 500 children get diagnosed every year. Every year, folks. Approximately 35, 000 children are currently in treatment. Fionny is just one of them.
I don't mean to scare you, but in other ways...I guess I kinda do. Something has to be done about this. More research has to happen. I know it's that time of year when people start thinking about how to give back to others, how to make a difference. There are so many worthwhile organizations and issues. So very many. Please know that I'm not asking you NOT to give to those organizations. I ask only that you remember Childhood Cancer too when you think about how to help. There are many ways to donate toward pediatric cancer research. Here is just one:
http://www.childrenscancer.org/
Okay, I'll get off my soapbox now! I will close with a picture of my little warrior. Argh! A Merry Christmas to you all!
Monday, December 8, 2014
Phase 4, Here We Come!
Our boy made counts today! We were warned that he might have a few delays before we were able to progress to Phase 4, but this was definitely not the case for Fionn. His ANC today was actually above 1200 -- plenty of room to spare. Way to go, little buddy! Similarly, his platelets and hemoglobin looked divine. He is in great shape to begin the last stage of treatment before we enter The Promised Land (a.k.a. Maintenance) which will last until October 2017.
Phase 4 is called Delayed Intensification. Doesn't that sound lovely? Just kidding. I hate the name of it. It sounds scary and awful. And, from what our doctors tell us, it can be. In comparison to the last two phases of treatment, this phase will be much harder. So far, we have been so lucky. Fionn seems to feel great all the time. Great energy, great appetite. He has been our same mischievous Fionny. Our little spitfire.
During this next phase, Fionn will be given every chemo med in their arsenal. Although he has received all of these chemo meds before, he will now be given them in different combinations. He will also resume the dreaded oral steroids this week, but at least it's only for 7 days at a time. In terms of side effects to the meds, Fionn might feel like he has the flu a lot of the time. He might feel nauseous. He will most certainly lose his hair again. He will experience neutropenia (low ANC) and probably some fevers too. At the end of this phase, Fionn will have radiation on his brain. I shudder every time I think about it. Radiation on my little boy's brain. How can any parent feel comfortable with that? I have talked to Fionn's doctors so many times about this. Really? Does he have to have it? Is there any way around it? The answer is always the same. "No, Casey. No. He has to have it." You see, leukemia cells like to "hide" in the brain (and in the spine which is why Fionn has had a zillion spinal infusions of chemo). So, as much as I hate the idea of the radiation, it will happen. Obviously, it is preferable to leukemia cells in my boy's brain.
Fionn just returned to the room after his spinal tap. All is well. I'll update more later this week.
Phase 4 is called Delayed Intensification. Doesn't that sound lovely? Just kidding. I hate the name of it. It sounds scary and awful. And, from what our doctors tell us, it can be. In comparison to the last two phases of treatment, this phase will be much harder. So far, we have been so lucky. Fionn seems to feel great all the time. Great energy, great appetite. He has been our same mischievous Fionny. Our little spitfire.
During this next phase, Fionn will be given every chemo med in their arsenal. Although he has received all of these chemo meds before, he will now be given them in different combinations. He will also resume the dreaded oral steroids this week, but at least it's only for 7 days at a time. In terms of side effects to the meds, Fionn might feel like he has the flu a lot of the time. He might feel nauseous. He will most certainly lose his hair again. He will experience neutropenia (low ANC) and probably some fevers too. At the end of this phase, Fionn will have radiation on his brain. I shudder every time I think about it. Radiation on my little boy's brain. How can any parent feel comfortable with that? I have talked to Fionn's doctors so many times about this. Really? Does he have to have it? Is there any way around it? The answer is always the same. "No, Casey. No. He has to have it." You see, leukemia cells like to "hide" in the brain (and in the spine which is why Fionn has had a zillion spinal infusions of chemo). So, as much as I hate the idea of the radiation, it will happen. Obviously, it is preferable to leukemia cells in my boy's brain.
Fionn just returned to the room after his spinal tap. All is well. I'll update more later this week.
Monday, December 1, 2014
Bye Week
Well, it started out with a bang, but it ended with an anti-climatic whimper.
Last night around 9 pm, I heard from our regular Monday sitter that she had a stomach virus. "Maybe it's food poisoning," she texted. "I can still come if you want."
Nah. I didn't want.
I foolishly thought, "Ah, what the heck? I'll just take Dex with me to clinic tomorrow." After all, it was going to be a relatively short appointment which, in clinic speak, usually translates to about 3 hours. Conor expressed his concern about this plan, but I insisted. "No, no. It'll be fine." I went to bed.
Around 2 am the next morning, I woke up in a cold sweat. Dex at the oncology clinic? Had I lost my freaking mind? The kid doesn't sit still for a hot minute. What the heck am I going to do with him for possibly 3 hours in a hospital waiting room? Oh god, oh god, oh god, oh god. Commence rocking back and forth in a fetal position.
So I posted a plea to Facebook. Please take care of my child so I don't lose my mind tomorrow. Please. Pretty please. Optional cherry on top.
It didn't take long before my amazing friend, Clarissa Harris, texted to say she was getting in the car and heading my way. But first....did I want something from Dunkin Donuts?
I mean, seriously? Best. Friends. Ever.
Then I got a text from Clarissa a few minutes later. Um...yeah. Her daughter just threw up.
Say it with me, folks...Seriously?
Of course, Amazing Clarissa still offered to come grab Dex once she cleaned up her sweet girl.
Nah.
So I was back to Square One. Acknowledging defeat, I packed up the boys and headed toward the clinic. It was happening. My toddler was coming with us. Shoot me now.
Then a magical thing happened. Our friend, Bruce Pike, appeared on the scene (er, my Facebook feed). Bruce works from home sometimes and could watch Dex! Cue Hallelujah chorus!
I ditched the rascally toddler with Bruce and his daughter, Sadie Rae, who is literally weeks younger than Dex and headed to the hospital. Within minutes I got this photo via text from Bruce.
Well, no need to worry about Dex! He's doing just fine!
On to the clinic with my Fionny. Today's appointment was extremely anti-climatic. Turns out it was totally a bye week. Fionn's port wasn't even accessed. We just did vitals and had a chat with his doctors. Nevertheless, the appointment took TWO AND A HALF HOURS. If Dex had been with me, I seriously would have lost my marbles. And I really don't have any to spare these days, folks. I need all those marbles. Saving them for a rainy day!
After our lackluster appointment, we had a little bit of time to kill while we waited for Dexie to wake up from his nap. It was lunchtime, so I asked Fionny where he wanted to go eat. Just Mommy and Fionny. A lunch date with my favorite four-year-old. And you know what he said?
The hospital cafeteria.
Mmmmm...Yummers!
So here is a picture of my happy lunch date with his pepperoni pizza from the hospital cafeteria which is, by the way, the exact same pizza that he receives on the inpatient lunch cart on the 4th floor.
We finished our feast, grabbed Fionny's new meds, and went to pick up Dex. I'll have you know that my littlest man was happy as a clam, munching a bowl of Cheerios and hanging with his new BFF, Sadie Rae. Huge thanks again to Bruce Pike for saving the day.
Well, that's it, folks. Should be a pretty normal week. (I know, I know...Knock on some wood...FAST!)
Goodnight, friends.
Last night around 9 pm, I heard from our regular Monday sitter that she had a stomach virus. "Maybe it's food poisoning," she texted. "I can still come if you want."
Nah. I didn't want.
I foolishly thought, "Ah, what the heck? I'll just take Dex with me to clinic tomorrow." After all, it was going to be a relatively short appointment which, in clinic speak, usually translates to about 3 hours. Conor expressed his concern about this plan, but I insisted. "No, no. It'll be fine." I went to bed.
Around 2 am the next morning, I woke up in a cold sweat. Dex at the oncology clinic? Had I lost my freaking mind? The kid doesn't sit still for a hot minute. What the heck am I going to do with him for possibly 3 hours in a hospital waiting room? Oh god, oh god, oh god, oh god. Commence rocking back and forth in a fetal position.
So I posted a plea to Facebook. Please take care of my child so I don't lose my mind tomorrow. Please. Pretty please. Optional cherry on top.
It didn't take long before my amazing friend, Clarissa Harris, texted to say she was getting in the car and heading my way. But first....did I want something from Dunkin Donuts?
I mean, seriously? Best. Friends. Ever.
Then I got a text from Clarissa a few minutes later. Um...yeah. Her daughter just threw up.
Say it with me, folks...Seriously?
Of course, Amazing Clarissa still offered to come grab Dex once she cleaned up her sweet girl.
Nah.
So I was back to Square One. Acknowledging defeat, I packed up the boys and headed toward the clinic. It was happening. My toddler was coming with us. Shoot me now.
Then a magical thing happened. Our friend, Bruce Pike, appeared on the scene (er, my Facebook feed). Bruce works from home sometimes and could watch Dex! Cue Hallelujah chorus!
I ditched the rascally toddler with Bruce and his daughter, Sadie Rae, who is literally weeks younger than Dex and headed to the hospital. Within minutes I got this photo via text from Bruce.
Well, no need to worry about Dex! He's doing just fine!
On to the clinic with my Fionny. Today's appointment was extremely anti-climatic. Turns out it was totally a bye week. Fionn's port wasn't even accessed. We just did vitals and had a chat with his doctors. Nevertheless, the appointment took TWO AND A HALF HOURS. If Dex had been with me, I seriously would have lost my marbles. And I really don't have any to spare these days, folks. I need all those marbles. Saving them for a rainy day!
After our lackluster appointment, we had a little bit of time to kill while we waited for Dexie to wake up from his nap. It was lunchtime, so I asked Fionny where he wanted to go eat. Just Mommy and Fionny. A lunch date with my favorite four-year-old. And you know what he said?
The hospital cafeteria.
Mmmmm...Yummers!
So here is a picture of my happy lunch date with his pepperoni pizza from the hospital cafeteria which is, by the way, the exact same pizza that he receives on the inpatient lunch cart on the 4th floor.
We finished our feast, grabbed Fionny's new meds, and went to pick up Dex. I'll have you know that my littlest man was happy as a clam, munching a bowl of Cheerios and hanging with his new BFF, Sadie Rae. Huge thanks again to Bruce Pike for saving the day.
Well, that's it, folks. Should be a pretty normal week. (I know, I know...Knock on some wood...FAST!)
Goodnight, friends.
Sunday, November 30, 2014
Guess Who's Coming to Dinner?
What a wonderful long holiday weekend! I feel like I'm still buzzing from how fabulous it was. Oh, how I love that feeling!
A few weeks ago, it seemed like we were set up for a very different Thanksgiving than the one we ended up having. Fionn was on schedule to finish up his last inpatient stay the week before Thanksgiving. No family was coming to town. It was just going to be me and my boys (all 3 of them). We had a quiet Thanksgiving dinner planned with some friends and a few other gatherings over the course of the weekend. Nothing too big. Just very laid back.
Then Fionn got a fever a few weeks ago. And everything changed. We realized we would spend at least a portion of Thanksgiving in the hospital. It was a bummer at first, but we made peace with the whole idea.
Then Conor's wonderful sister, Meaghan, floated the possibility of coming to visit for Thanksgiving. Did we want her come? Would it be helpful? I read her sweet email, immediately pressed "reply" and typed back the equivalent of "Hell, yes. Hell to the Yes."
So now Meaghan was on her way. Happy day!
Then I got a call last weekend from Conor's brother, Carey. He and Brenda were considering a trip to DC for the holiday weekend. They wanted to surprise Conor, Meaghan, and the boys. Would I be game to play along? Absolutely, I said. Bring it.
So they brought it.
Meaghan, for her part, arrived on Wednesday afternoon after a harrowing flight from Minnesota in the icy weather. She was immediately put to task babysitting Sir Deaglan Crimmins on Thanksgiving morning so Conor and I could spend some QT with our boy at the hospital.
Meanwhile, at the hospital, we were just waiting on Fionn's official walking papers. Although he had a fever on Wednesday night which threatened to delay our discharge, we learned that we were still on track to get out of the hospital at 2:30 pm since the fever had not resurfaced. It was looking like we would be able to make our Thanksgiving dinner out at Jason's house after all! We notified Jason that we would be gracing his house with our presence later that day and with 3 additional guests -- hope that's okay! Of course, Jason, being an amazing friend and host, said it was totally fine. The more, the merrier, he said.
We were just wrapping up a wonderful visit from Katie, Robert, and their darling daughter, Jacqueline, who brought warm muffins for us (I mean, do we have the best friends ever or what?) when our surprise visitors arrived. Conor was completely surprised and so touched by Carey and Brenda's visit. And Fionn was thrilled to see them too, especially once we engaged in an epic game of hide and seek all around the oncology floor. Brenda definitely got the prize for the best hiding skills. She scared the crap out of one of the nurses by hiding quietly under one of the work stations.
Following our discharge from the hospital, we stopped briefly by the house to pick up Meaghan and Deaglan before heading out to Jason's for Thanksgiving dinner. As it turned out, there was a much bigger crowd at Jason's than originally expected due to many altered travel plans, so we ended up spending Thanksgiving with so many of our favorite people. It was wholly chaotic but completely wonderful at the same time. Oh, there were kids running everywhere -- so much noise and craziness! Any other year it might have driven me nuts. But this year...I guess I was just so grateful to be out of the sterility of the hospital. The screams of "Mine!" and "He hit me!" were like music to my ears. Ah, the sounds of the season!
The rest of the weekend was pretty relaxed. We spent a lot of time at home or at least in our neighborhood. The one exception was last Friday when we ventured over to the Museum of Natural History in the morning. Apparently, everyone else in America had the same idea. Holy mackerel, it was crowded! The cafeteria alone was seriously like one of the seven circles of hell. I've decided that balancing a tray full of food and trying to wrangle a toddler through a crowded cafeteria is definitely an experience not worth repeating for the rest of my life if possible.
Despite the crowds, we still had a nice time. A highlight, as always, was the butterfly exhibit. Check out this picture of one little winged friend which landed on Fionn's boot.
Watching Fionn and Uncle Carey play "rescue vehicles" at the kitchen table.
A few weeks ago, it seemed like we were set up for a very different Thanksgiving than the one we ended up having. Fionn was on schedule to finish up his last inpatient stay the week before Thanksgiving. No family was coming to town. It was just going to be me and my boys (all 3 of them). We had a quiet Thanksgiving dinner planned with some friends and a few other gatherings over the course of the weekend. Nothing too big. Just very laid back.
Then Fionn got a fever a few weeks ago. And everything changed. We realized we would spend at least a portion of Thanksgiving in the hospital. It was a bummer at first, but we made peace with the whole idea.
Then Conor's wonderful sister, Meaghan, floated the possibility of coming to visit for Thanksgiving. Did we want her come? Would it be helpful? I read her sweet email, immediately pressed "reply" and typed back the equivalent of "Hell, yes. Hell to the Yes."
So now Meaghan was on her way. Happy day!
Then I got a call last weekend from Conor's brother, Carey. He and Brenda were considering a trip to DC for the holiday weekend. They wanted to surprise Conor, Meaghan, and the boys. Would I be game to play along? Absolutely, I said. Bring it.
So they brought it.
Meaghan, for her part, arrived on Wednesday afternoon after a harrowing flight from Minnesota in the icy weather. She was immediately put to task babysitting Sir Deaglan Crimmins on Thanksgiving morning so Conor and I could spend some QT with our boy at the hospital.
Meanwhile, at the hospital, we were just waiting on Fionn's official walking papers. Although he had a fever on Wednesday night which threatened to delay our discharge, we learned that we were still on track to get out of the hospital at 2:30 pm since the fever had not resurfaced. It was looking like we would be able to make our Thanksgiving dinner out at Jason's house after all! We notified Jason that we would be gracing his house with our presence later that day and with 3 additional guests -- hope that's okay! Of course, Jason, being an amazing friend and host, said it was totally fine. The more, the merrier, he said.
We were just wrapping up a wonderful visit from Katie, Robert, and their darling daughter, Jacqueline, who brought warm muffins for us (I mean, do we have the best friends ever or what?) when our surprise visitors arrived. Conor was completely surprised and so touched by Carey and Brenda's visit. And Fionn was thrilled to see them too, especially once we engaged in an epic game of hide and seek all around the oncology floor. Brenda definitely got the prize for the best hiding skills. She scared the crap out of one of the nurses by hiding quietly under one of the work stations.
Following our discharge from the hospital, we stopped briefly by the house to pick up Meaghan and Deaglan before heading out to Jason's for Thanksgiving dinner. As it turned out, there was a much bigger crowd at Jason's than originally expected due to many altered travel plans, so we ended up spending Thanksgiving with so many of our favorite people. It was wholly chaotic but completely wonderful at the same time. Oh, there were kids running everywhere -- so much noise and craziness! Any other year it might have driven me nuts. But this year...I guess I was just so grateful to be out of the sterility of the hospital. The screams of "Mine!" and "He hit me!" were like music to my ears. Ah, the sounds of the season!
The rest of the weekend was pretty relaxed. We spent a lot of time at home or at least in our neighborhood. The one exception was last Friday when we ventured over to the Museum of Natural History in the morning. Apparently, everyone else in America had the same idea. Holy mackerel, it was crowded! The cafeteria alone was seriously like one of the seven circles of hell. I've decided that balancing a tray full of food and trying to wrangle a toddler through a crowded cafeteria is definitely an experience not worth repeating for the rest of my life if possible.
Despite the crowds, we still had a nice time. A highlight, as always, was the butterfly exhibit. Check out this picture of one little winged friend which landed on Fionn's boot.
 |
| Fionn, the Butterfly Whisperer. |
My favorite moments from the weekend were definitely the small ones. I mean, aren't they always? Here are a few of my faves.
Listening to Deaglan giggle with Auntie Meaghan.
Watching Fionn and Uncle Carey play "rescue vehicles" at the kitchen table.
And (not pictured) also sipping tea with Meaghan at the kitchen table and chatting. Sharing amaretto with Brenda. Walking into the restaurant on Saturday night and seeing Uncle Bill waiting for us (seeing him just always makes me smile). Enjoying the beautiful weather today with some friends and also Meaghan. Having Face Time with Meghan and the boys and singing "happy birthday" to Liam.
All simple moments. All wonderful and perfect. Man, I love my family.
I have to close with one last picture. A very special one. For those of you who know Meaghan, this little tidbit will not surprise. Over the last couple of months, Meaghan has been collecting photographs from the other siblings (and also scouring Facebook) so that she could make a book for Fionn about his cancer journey thus far. It included pictures of all of his cousins and a lot about how much everyone loves him. It was entitled Fabulous, Fierce, Fighting Fionn. It makes me want to cry just thinking about it. Here is a picture of the book being read for the very first time last Friday at bedtime.
Despite Fionn's asshole expression in this photo, I promise he really loved the
book. Thank you, Meaghan, for this amazingly special gift. We will
keep it always.
And to Carey and Brenda who made the incredibly long trip from Chicago to DC to surprise my dear boys for Thanksgiving...thank you. Your visit meant so much. We love you and hope that we are having a safe trip back to the Windy City!
Here's hoping everyone had a wonderful Thanksgiving. We hit the clinic tomorrow morning for a quick counts check, so I'll report back then.
Wednesday, November 26, 2014
A Cancer Mom's Guide to Giving Thanks
Back in my former life (pre-leukemia), I used to pride myself on being a good thank you note writer. I always tried to get them out in a timely matter following the receipt of any gift or service. I would write something sincere and hopefully meaningful about the gift, seal it, and drop it in the mailbox during one of my walks around the neighborhood with the boys. I always loved that feeling of completion. That feeling of closing the circle. Gift received, gift acknowledged. Done and done.
When Fionn got sick in June, we were flooded with gifts and help. I'm really not being hyperbolic here. It was overwhelming in the best, most incredible way. In fact, Fionn received so many presents that we started limiting him as far as how many he got to open. Only two gifts per day. One after his morning medications and one after his evening medications. Two gifts a day, people. I started joking that I wasn't sure what would be harder to overcome -- the leukemia or the spoiled brat that Fionn would surely become as a result of all those presents!
At first, I tried to keep up. Conor started me an Excel spreadsheet where I would record each and every gift that arrived, the date it came, and a little description of the thing. "Hand sewn blanket from Andrea Lemire," I carefully recorded. "Green with Buzz Lightyear-type icons on it." There was also an abundance of food that was made for us (as well a deep freeze that was purchased for us to house this food, I'll have you know). This too was carefully recorded.
Oh, and of course, there was also Deaglan care. Our little guy was basically passed from one amazing friend to another for that first week after we got Fionn's diagnosis until our family could get there to assist. Neither Conor nor I could bear to leave Fionn that first week, so we were by his side constantly in the ICU. Yep, all Deaglan care was dutifully documented.
Everything went on the list. Every visit, every unusually kind email. Everything. Heck, I even noted once when one of my friends bought me a Diet Coke during her visit. It's the little things, right? Riiiight.
My thought was this. Writing thank you notes was simply not possible at the time. Life was too crazy. Our thoughts were too fixated on Fionn. We had no energy to spare. None. My thought was that I would begin a massive thank you note writing campaign when things calmed down. Just commit one day and do it.
Well, it's nearly six months later, and I am embarrassed to say that my Excel spreadsheet has been virtually unused. As the entries started to pile up last summer, I realized that I had to surrender. As important as those nice notes had always been to me in the past, they simply weren't fitting into my new life as a cancer mom. Worst of all was that I was starting to resent the gifts we received because it would mean one more thing for me to do. And that doesn't serve anybody!
So I let go. It's one of the many things I have let go in the past six months. (Sadly, many of the other things have to do with my appearance and cooking for my family. Sorry, Conor!). I still try very hard to thank people for the gifts and services they are bestowing upon our family. But I do it through a text. Or an email. Something quick I can do while Fionn watches a show or naps. There might be a time in the future when my formal handwritten notes make a resurgence. But it isn't right now. And that has to be okay.
Because here's the thing. People weren't doing those wonderful things for us because they needed acknowledgement on a pretty thank you note. They were doing them because they loved us and wanted desperately to help. Desperately. I will never forget the sound of desperation in my dear friend Corey's voice when I talked to her for the first time following Fionn's diagnosis. "I have to help. I have to do something. Please let me do something." And I did. Boy, did I ever. Corey is one of the many unsung heroes in this journey. Behind the scenes but always thinking of us. Always trying to help. We are so forever grateful to Corey and so many, many others. We honestly could not have survived this time without you all. Really. I think I would have ended up in the looney bin. And my children would have definitely been existing on PB&J sandwiches for the past 6 months. That much is clear.
This Thanksgiving is different in a lot of ways, and not just because we will be here at the hospital. It is different because we have more to be grateful and thankful for than ever before. Through Fionn's journey over the past 6 months, we have learned that we are stronger as a family than we ever knew that we could be. And we have learned that we are loved. Very, very loved. And honestly, what is more important than that?
Love, love, love. Love is all you need. (Someone once said that, right?)
And last but most important on our gratitude list is this. Our boy is kicking cancer's ass and taking names. We will get discharged tomorrow around 2:30 pm. Happy Thanksgiving indeed.
Best to everyone during this special holiday season. Our warmest thoughts are with you all.
When Fionn got sick in June, we were flooded with gifts and help. I'm really not being hyperbolic here. It was overwhelming in the best, most incredible way. In fact, Fionn received so many presents that we started limiting him as far as how many he got to open. Only two gifts per day. One after his morning medications and one after his evening medications. Two gifts a day, people. I started joking that I wasn't sure what would be harder to overcome -- the leukemia or the spoiled brat that Fionn would surely become as a result of all those presents!
At first, I tried to keep up. Conor started me an Excel spreadsheet where I would record each and every gift that arrived, the date it came, and a little description of the thing. "Hand sewn blanket from Andrea Lemire," I carefully recorded. "Green with Buzz Lightyear-type icons on it." There was also an abundance of food that was made for us (as well a deep freeze that was purchased for us to house this food, I'll have you know). This too was carefully recorded.
Oh, and of course, there was also Deaglan care. Our little guy was basically passed from one amazing friend to another for that first week after we got Fionn's diagnosis until our family could get there to assist. Neither Conor nor I could bear to leave Fionn that first week, so we were by his side constantly in the ICU. Yep, all Deaglan care was dutifully documented.
Everything went on the list. Every visit, every unusually kind email. Everything. Heck, I even noted once when one of my friends bought me a Diet Coke during her visit. It's the little things, right? Riiiight.
My thought was this. Writing thank you notes was simply not possible at the time. Life was too crazy. Our thoughts were too fixated on Fionn. We had no energy to spare. None. My thought was that I would begin a massive thank you note writing campaign when things calmed down. Just commit one day and do it.
Well, it's nearly six months later, and I am embarrassed to say that my Excel spreadsheet has been virtually unused. As the entries started to pile up last summer, I realized that I had to surrender. As important as those nice notes had always been to me in the past, they simply weren't fitting into my new life as a cancer mom. Worst of all was that I was starting to resent the gifts we received because it would mean one more thing for me to do. And that doesn't serve anybody!
So I let go. It's one of the many things I have let go in the past six months. (Sadly, many of the other things have to do with my appearance and cooking for my family. Sorry, Conor!). I still try very hard to thank people for the gifts and services they are bestowing upon our family. But I do it through a text. Or an email. Something quick I can do while Fionn watches a show or naps. There might be a time in the future when my formal handwritten notes make a resurgence. But it isn't right now. And that has to be okay.
Because here's the thing. People weren't doing those wonderful things for us because they needed acknowledgement on a pretty thank you note. They were doing them because they loved us and wanted desperately to help. Desperately. I will never forget the sound of desperation in my dear friend Corey's voice when I talked to her for the first time following Fionn's diagnosis. "I have to help. I have to do something. Please let me do something." And I did. Boy, did I ever. Corey is one of the many unsung heroes in this journey. Behind the scenes but always thinking of us. Always trying to help. We are so forever grateful to Corey and so many, many others. We honestly could not have survived this time without you all. Really. I think I would have ended up in the looney bin. And my children would have definitely been existing on PB&J sandwiches for the past 6 months. That much is clear.
This Thanksgiving is different in a lot of ways, and not just because we will be here at the hospital. It is different because we have more to be grateful and thankful for than ever before. Through Fionn's journey over the past 6 months, we have learned that we are stronger as a family than we ever knew that we could be. And we have learned that we are loved. Very, very loved. And honestly, what is more important than that?
Love, love, love. Love is all you need. (Someone once said that, right?)
And last but most important on our gratitude list is this. Our boy is kicking cancer's ass and taking names. We will get discharged tomorrow around 2:30 pm. Happy Thanksgiving indeed.
Best to everyone during this special holiday season. Our warmest thoughts are with you all.
Monday, November 24, 2014
Last Scheduled Admission
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| "I'm looking at my old country, Washington, DC." |
Speaking of celebrating, this admission means that our Thanksgiving this year will also be spent in the hospital. We will most likely be discharged on Thursday late afternoon or early evening.
Although we originally felt melancholy about the idea of being here on Thanksgiving, Conor and I have both come to terms with it. I think I speak for both of us when I say that we are actually totally fine with it now. In fact, we had an opportunity to reschedule this inpatient stay for last weekend to avoid a Thanksgiving hospitalization, but we chose to wait. We all needed a weekend at home. And, based on Fionn's counts today (just barely above the 750 threshold), his little body needed a few additional days to recover.
So our Thanksgiving will look a little different this year. Heck, our whole life has looked pretty different lately! Why should Thanksgiving be any different?
I'll update again soon with news from our hospital stay.
Sunday, November 16, 2014
Home!
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| Searching for Fionny Crimmins |
Fionn's ANC clocked in at only 120 this morning, so we assumed that we had another day or two in the hospital. But nope! A couple of hours later, we got the fabulous news that Fionny was being discharged around lunchtime. Oh happy day!
So here we are at home once again where happy chaos reigns. We are also looking forward to the week ahead which should be pretty normal. No clinic, no chemo...no problem. It will be so nice to be a family again in our new home.
Have a great week, everybody.
Friday, November 14, 2014
The Beauty of Boring
I realized today that the absolute best thing you can ever hear from a doctor about your child is "boring." Especially when it refers to a little mass behind your little boy's ear.
See, the funny thing about having a kid with cancer is that it makes you take a raised bump on your other kid's head a lot more seriously. Conor and I had both noticed a mass on Dex's head behind his right ear. It is about the size of a marble. Not red or painful to the touch. But there. Definitely there. I met with his new pediatrician (who I LOVE!! Hooray!) last Tuesday for the first time, and I asked him about the bump. He assured me that it was probably a lymph nod or possibly a pre-cancerous cyst but nothing to worry about. "You might want to get an ultrasound on it at some point," he said with a shrug.
Then I told him about Fionn. And we both decided that it was best to get it checked out right away.
I took Dex to the imaging center today for the ultrasound. Oh holy cow, getting an ultrasound on your 18-month-old son's head is quite the experience. Deaglan was having NONE of it. Crying, kicking, wriggling away. And I, of course, brought nothing to help matters. I even left my damn phone in the car, so I couldn't even let him mess around with that. I mean, seriously? Shouldn't I be an expert at distracting my child from medical procedures at this point? Sheesh!
Finally, the technician got the images she needed and took them to the doctor. He came in a few minutes later, smiling and cheerful. Looked at the lump himself for a minute and declared that it was just a "boring" lymph nod. Nothing to worry about. "Just forget about it," he said jovially.
Boring. What a wonderful word. Man, I need a little more boring in my life. Excuse me, another order of boring please!
On the less boring front, we are still in the hospital with Fionny, just waiting for his ANC to come up. It was at a less-than-amazing 10 today, so we probably have a few more days in front of us. However, his fever is totally gone, and our boy is feeling GREAT! He is full of energy and attitude -- just ask his Auntie Erin who was with him ALL DAY today so I could take Dex to his ultrasound appointment! Erin has so incredibly helpful to our family this past week. I really get a little verclempt when I think about how wonderful she has been to us. From taking care of the boys to helping unload the car when it's jammed full of crap from the old house, she has just been great. Most recently, she changed her flight so that she could stay with us through the weekend and help out while Fionny is in the hospital. We love you, Erin.
I also have to give a shout-out to Clarissa Harris and MJ Silvulich who assisted me today with the biggest logistical nightmare of my life. One kid in the hospital, another kid with a doctor appointment in Rockville, and a new couch being delivered -- all at the same time! Ack! Short of cloning myself which is apparently STILL not an option, it was just too much to handle for one person. Thank you, dear friends, for making today possible. We love you so much.
I also have to brag on Fionny's new school, Cedar Lane Nursery School. (Side note: HUGE thank you to Heather Bruskin for telling me about the school in the first place). We have only been attending CLNS for a couple of weeks. I mean, honestly Fionny has been there for 8 days of class. Eight. Yet their response to his hospitalizations these past few weeks has been off the charts amazing. Food deliveries, offers to help with Deaglan, videos and drawings from his classmates. I am so truly touched and awed by the compassion of these people. These new friends. And I am ever-so-thankful to have landed in this wonderful place.
Thank you all for loving us and holding us in your hearts. We get by with a little help from our friends, we really do.
See, the funny thing about having a kid with cancer is that it makes you take a raised bump on your other kid's head a lot more seriously. Conor and I had both noticed a mass on Dex's head behind his right ear. It is about the size of a marble. Not red or painful to the touch. But there. Definitely there. I met with his new pediatrician (who I LOVE!! Hooray!) last Tuesday for the first time, and I asked him about the bump. He assured me that it was probably a lymph nod or possibly a pre-cancerous cyst but nothing to worry about. "You might want to get an ultrasound on it at some point," he said with a shrug.
Then I told him about Fionn. And we both decided that it was best to get it checked out right away.
I took Dex to the imaging center today for the ultrasound. Oh holy cow, getting an ultrasound on your 18-month-old son's head is quite the experience. Deaglan was having NONE of it. Crying, kicking, wriggling away. And I, of course, brought nothing to help matters. I even left my damn phone in the car, so I couldn't even let him mess around with that. I mean, seriously? Shouldn't I be an expert at distracting my child from medical procedures at this point? Sheesh!
Finally, the technician got the images she needed and took them to the doctor. He came in a few minutes later, smiling and cheerful. Looked at the lump himself for a minute and declared that it was just a "boring" lymph nod. Nothing to worry about. "Just forget about it," he said jovially.
Boring. What a wonderful word. Man, I need a little more boring in my life. Excuse me, another order of boring please!
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| Sorry, we're all out of boring here. |
I also have to give a shout-out to Clarissa Harris and MJ Silvulich who assisted me today with the biggest logistical nightmare of my life. One kid in the hospital, another kid with a doctor appointment in Rockville, and a new couch being delivered -- all at the same time! Ack! Short of cloning myself which is apparently STILL not an option, it was just too much to handle for one person. Thank you, dear friends, for making today possible. We love you so much.
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| The couch that MJ built (or at least opened the door to receive) |
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| Built-ins beside the new couch. I arranged these books according to color. Yes, I am that person now. |
Thank you all for loving us and holding us in your hearts. We get by with a little help from our friends, we really do.
Thursday, November 13, 2014
Admission
Well, here we are again. I'm sitting beside Fionny as he sleeps in the hospital bed. His ANC was literally zero, folks. Well, 0.03 to be exact. So even though his temperature has already dropped into the normal range, he was admitted to the hospital. We are waiting for his blood cultures to come back so they can rule out something bacterial, but they strongly suspect he has a virus. Conor was told to expect for him to be in the hospital for at least 48 hours, maybe more. We have to wait for his ANC to climb back up from the bottom of the barrel where it is residing now. It needs to be 200 before he can get his walking papers.
Based on all of this, we can definitely assume that Fionn will not make counts next week which means that we are staring down a Thanksgiving dinner in the hospital if he makes counts the following week. Ugh. Trying to remember that this is truly not a big deal in the grand scheme of things. And it's really not. It's just...hmm...unpleasant, shall we say?
I'll update once we know more.
Based on all of this, we can definitely assume that Fionn will not make counts next week which means that we are staring down a Thanksgiving dinner in the hospital if he makes counts the following week. Ugh. Trying to remember that this is truly not a big deal in the grand scheme of things. And it's really not. It's just...hmm...unpleasant, shall we say?
I'll update once we know more.
101.5
101.5. That was Fionn's temperature an hour ago. It's a temperature that would cause little alarm in most parents, but for us...it's an emergency. Fionn and Conor are at Children's ER now. Fionn will get accessed, they'll check his counts, and an antibiotic will be administered. Depending on how low his counts are, he may or may not be admitted to the hospital.
So I'm just sitting here, worrying a bit, and thought it might be a good time to update the blog.
Despite our current status, we have been doing really well over here. It's been a great week. My decision to stay home last weekend was a good one, I think. It was so nice to be here at the new house, getting some things done and also exploring the new neighborhood a bit. It also filled my heart to see our boys back together again. When they are not fighting like cats and dogs, they are truly adorable together.
On Saturday (after our morning pancakes, of course) we went to the neighborhood farmer's market and scored a couple of pickles for the boys and some flowers for the house. Then we headed over to the children's library down the street. It was wonderful. Just the perfect Saturday morning. The fact that we traveled via red wagon didn't hurt either.
We also welcomed home a certain fluffy kitty. Our Luca Bean. Luca has been vacationing over in Bethesda with our dear friends, Jon and Emily, while we dealt with the whole process of selling our house and moving. We are forever indebted to them. Our biggest fear is that Luca is going to feel disappointed with her return to us because she received such great treatment from Jon and Emily and their boys!
This weekend also brought a special visitor to our home. Our wonderful Auntie Erin, Conor's sister, who has been with us all week. It has been great having Erin here. She is such an easy house guest. She is so laid back and truly does her own thing, yet she is also really helpful and playful with the boys. Thanks to Erin, I have been able to run several errands solo in the past week and have enjoyed multiple runs in the beautiful Fall weather. Conor and I also got to go out with some friends last Saturday night for the first time in ages. It was glorious. Here is a pic of Auntie Erin and Fionny right before they took a joint nap last Friday. They were trying to find Waldo using Fionn's little flashlight. Don't quote me on it, but I think they found him.
We are really loving our new house. We have miles to go before we are completely unpacked, but we have made a lot of progress. It is starting to feel like home. Fionny has been enjoying all the "rainbows" that we find throughout the house as a result of the stain glass windows. Here is a pic of Fionny who requested that I document the "rainbow on my face."
I don't know about a rainbow, but he does look enlightened, doesn't he? Keep our boy in your thoughts, friends. We should be hearing back soon about his bloodwork.
So I'm just sitting here, worrying a bit, and thought it might be a good time to update the blog.
Despite our current status, we have been doing really well over here. It's been a great week. My decision to stay home last weekend was a good one, I think. It was so nice to be here at the new house, getting some things done and also exploring the new neighborhood a bit. It also filled my heart to see our boys back together again. When they are not fighting like cats and dogs, they are truly adorable together.
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| "Mom, take a picture of me and baby brother!" |
We also welcomed home a certain fluffy kitty. Our Luca Bean. Luca has been vacationing over in Bethesda with our dear friends, Jon and Emily, while we dealt with the whole process of selling our house and moving. We are forever indebted to them. Our biggest fear is that Luca is going to feel disappointed with her return to us because she received such great treatment from Jon and Emily and their boys!
This weekend also brought a special visitor to our home. Our wonderful Auntie Erin, Conor's sister, who has been with us all week. It has been great having Erin here. She is such an easy house guest. She is so laid back and truly does her own thing, yet she is also really helpful and playful with the boys. Thanks to Erin, I have been able to run several errands solo in the past week and have enjoyed multiple runs in the beautiful Fall weather. Conor and I also got to go out with some friends last Saturday night for the first time in ages. It was glorious. Here is a pic of Auntie Erin and Fionny right before they took a joint nap last Friday. They were trying to find Waldo using Fionn's little flashlight. Don't quote me on it, but I think they found him.
We are really loving our new house. We have miles to go before we are completely unpacked, but we have made a lot of progress. It is starting to feel like home. Fionny has been enjoying all the "rainbows" that we find throughout the house as a result of the stain glass windows. Here is a pic of Fionny who requested that I document the "rainbow on my face."
I don't know about a rainbow, but he does look enlightened, doesn't he? Keep our boy in your thoughts, friends. We should be hearing back soon about his bloodwork.
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