Blissful….but not restful

It is truly blissful to be home as a family together.  It almost feels surreal…actually it totally does.  There were definitely days I didn’t think it would happen.  So we are definitely enjoying it.

As joyful as it was, what it wasn’t was restful.  Whew, last night was a rough one.  Thank goodness for my wonderful nurse friends on the Hemo/Onc floor gave me their number for any questions…and I had them.  Hardest part was Declan kept getting sick…one of the reasons we were delayed from leaving the hospital in the first place.  It was a little nerve-wracking with some tense moments which prompted a call to his doctor but we made it.

Today was a little better.  Declan’s home nurse said it could take a few days for him to completely acclimate from being away so long.  He did pretty good today and he is sleeping peacefully right now so I’m going to make this short so I can catch some zzz’s before he wakes up again…hopefully that’s tomorrow morning.  I can dream, right?  Hopefully, I CAN dream tonight. :)

Nighty-night and God Bless!

Ahhhhhhhhhhh home!!!

We made it!  After 51 1/2 days…we’re finally home with Declan.  It’s hard to believe he was in the hospital for that long…hard to believe, harder to live.  But he’s home.  He’s doing pretty well too.

We know this we will have more hospital stays (in fact the next one is in 2 weeks…but should only be there for a few days) but for now this is a HUGE milestone for Declan.  So we’re going to savor it.  :)

I’ll make this short because I think this may be an adjustment night (might be a day or so to adjust too so bear with me if I miss a day on here, please) which means probably not too much sleep for us but we’ll take it.  Thank you all for your continued prayers, we know they have helped Declan get to this point.

Here are a few pictures from today.  Enjoy!  We did!! :)

Woohoo!  I’m going home!!

Happy Daddy!!!

Welcome Home sign…signed by all the kids on our block (yep…great street to grow up on!)  Our amazing neighbors had our street decorated for Declan’s return…a balloon on every mailbox and at our house…the welcome sign and two huge groups of balloons.  It was so very thoughtful and definitely made me tear up.  We are so blessed to have these amazing people in our lives.

Happy family!!

Hey, hey…Coleman!!  I’m home for awhile buddy!  Can’t wait to chat you up about my experience…aw, forget that!  Let’s try out our new teeth and chew on some toys together instead, k? :)

Mother’s note…not too much of a “going home” outfit, eh?  In all our excitement to get Declan home, we completely forgot to bring him an outfit.  So he sported the hospital gear…right down the kiddie version of the skid free socks.  Seriously, they make them for babies…not sure why they have baby sizes the rubber treads just make the easier to kick off! As if any Mom needs her baby to be able to get his/her socks off any faster!

BTW, we knew we would be heading home this week but just not sure of the when.  We didn’t want to get our hopes up so I didn’t really mention it here…hope it was a nice surprise for you to learn it as we knew it.  :)

Something we have not told you…

The cancer Declan has, AT/RT, has been linked to a gene mutation. Instead of trying to paraphrase, here’s a cut of what Wikipedia says:

“Genetic similarities have been found within rhabdoid tumors. In particular the chromosomal 22 deletion is very common in AT/RTs. The chromosome 22 area contains the hSNF5/INI1 gene that appears to function as a classic tumor suppressor gene.[5] Most rhabdoid tumors have INI1 deletions whether they occur in the CNS, kidney or elsewhere. This mutation is viewed as the “first hit” which predisposes children to malignancies.”

A lot of words for…if Declan tested positive for INI1, then there was a possibility our other boys could also be positive for INI1.  We received confirmation about a month ago that Declan tested positive.  It was crushing because we knew of the implications for the rest of our children.  We have read of other families who have two children with an AT/RT diagnosis.  AT/RT is no joke..we are wimps compared to these people.  I cannot imagine what that must be like.  Two kids, two chemo regimes…ugh.

To ensure our other boys were not also impacted, especially Cole because of the twin thing, we provided the boys blood to the research team investigating this gene mutation.  The tests came back today.

I am happy to tell you, the boys came back negative.  That wind today in the Metro DC area was actually the collective breath Stan and I have been holding since we learned of this possibility being let out.  It does not change the treatment plan for Declan but it gives us the peace of mind to know we do not need to live in fear of this occurring again with one of our other children.  It does mean different things for Declan down the road (i.e. higher vigilance on our part to ensure scans are occurring regularly) but we need to tackle one hurdle at a time with him.  For now, we are thrilled with this news.

Wagon rides are fun, no matter where they are.

So what do we do every day in the hospital when we’re not having surgery, recovering from surgery, having an MRI/CAT scan, etc?  Well, we read, we sing, we play with toys, we have therapy (physical; occupational…we only hope he does what he loves – oh just kidding, it’s like physical therapy at Declan’s age; and speech…we’re very hopeful here since he couldn’t talk when he got here  – oh I’m just kidding again, it’s for sucking and swallowing) and wagon rides!

Declan is surprisingly patient spending most of his time in his bed or as of late, being held.  On one recent night, my bag of tricks was empty…all the books were read (and there were a lot), songs were sung…twice, the toys were becoming boring…it was 7pm and Declan was WIDE awake.  Ooooooook, what now?

And then I thought…what about a wagon ride?  (As I’ve mentioned, they do a fabulous job of keeping the kids as entertained as they can.  This includes wagons, bikes and trikes for the little ones…Wii and Playstation for the big kids.  I mean, really cool.)  I’ve been watching folks do laps with their bikes/trikes with their chemo poles in tow and thought why don’t we try it?  Just so happens that night we were able to take a break from all our lines and apart from the feeding tube, we were machine free.  Declan LOVED it.

He was like this the whole time…giggling and smiling at everyone.  I only wish I had our Flip video with us to capture the moments, there were many and it was too cute.  (BTW, if you’re contemplating the Flip…get one.  Stan got me one for Christmas and I’ve taken more video in the past 4 months than I’ve taken in years.  It’s great.  Now back to your regularly scheduled blog.)

Since then we’ve been on a few walks.  Each time we have a ball.  Declan is usually kicking his legs to show how much fun he’s having, plus it’s fun to play the ‘kick off the blanket’ game with Mom.  Well, he thinks it’s a laugh riot…I, of course because he’s so proud of his little self, think it’s pretty darn cute.

Sometimes we get sleepy…

And sometimes, we do fall asleep…

But every time, we have fun!

We hope to enjoy many more wagon rides once we get home.  I hope you have a wonderful night!  I know I did.  :)

Dear Chemo, part 2

I hate you and I love you.

I hate that you cause my baby pain but I love that you are also putting a hurtin’ on the cancer in his body.

I hate that you took my baby’s hair but I love my little blond, haired (almost) baldy, I mean baby.  Who knew he had two layers of hair color?!

I hate that I have to give my baby shots to help his white blood cells come back from your presence but I love…ok, I just hate that one.

I hate that I have to wear gloves to change my own baby’s diaper during chemo days and for 48 hours afterward but I love that, with said gloves, I don’t have to worry about getting poop on my hands. :)  Ok, ok…very selfish of me, I know!

I hate that it makes my baby feel, and get, sick but I love that he always seems to chase it with a smile…see below

I hate that some of the side effects my baby can’t verbalize but I love that he’s got his “voice” back which lets me know when I need to advocate for him.

I hate the feeling of helplessness I have when you’re around but love the feeling of hope you give me.

So Chemo, I will continue to hate and love you…and in the end, I hope I have nothin’ but love for you.

BTW…I turned 8 months old today!!  :)

Faith, Hope & Charity

My sister-in-law Michele once told me, “”you have a song for everything.”  Funny thing is I guess I do, song lyrics pop into my mind at the oddest times or I use the melodies to make-up my own lyrics!    Most of my life when things seemed bleak, the song “Have Faith, Hope & Charity” would pop into my head.  (I fondly remember that song from watching Roy Rodgers and Dale Evans.)   Faith was part of the fabric of everyday life.  As a kid I had a solid relationship with God, loved the nuns, loved the mass in latin, loved the music of course, and always felt a special connection to my faith.  Hope an aspiration, hoping that I would be good enough to get into heaven, trusting in Christ’s promise of eternal life and believing that efforts to walk in the footsteps of Christ would lead to happiness on earth and in heaven.  Charity seemed easy, when you come from a large family with limited means sharing is second nature.  My dad would give his last dime to someone in need and his 10 apples didn’t fall far from the tree! 

However, the concept of charity has taken on new meaning since we found out about Declan’s cancer.  Family has been terrific.  As soon as Stan & Sherri received the diagnosis for Declan and it became clear that the treatment would be long, costs would be great and that their income was going to be greatly impacted.  Stan’s siblings jumped immediately to set-up a website and think about fund-raising.  The siblings have also made time in their busy lives to help with the many demands of the other three boys at home — Will, Brady and Cole.  My sister Rosemary has driven an hour plus each way once or twice a week to bring dinner and help with the boys at the end of the day.  My nieces and other sisters have been a big support in so many ways.   Sherri’s mom Judy is amazing and is there around the clock, at home and the hospital (wish I had her energy).    Sherri’s Dad is at the hospital everyday.  Friends have also answered the call, picking up Will for LaCrosse practice every week, sending dinners, helping with yardwork, etc. 

But the overwhelming lesson of Charity, loving your neighbor as yourself, has been from the two thousand people who are “fans” of Declan’s page.  The ever flowing support — the constant prayers, wonderful cards and messages, assistance from independent fundraisers (lemonade stands, bake sales, t-shirts, etc).  This example of loving your neighbor, not only sympathizing with a situation but rising to the call to assist by actions, words, prayers is a blessing that has moved us and changed our family forever.  This “charity” has been a lifeline  — a boost to remind us that many people who don’t know Declan or us, complete strangers have joined with us to support our cause and pray that God will heal Declan and protect him from suffering and pain.   This unconditional love of one’s neighbor is the purest example of charity and has sustained us in the darkest hours of Declan’s Journey.  

We thank you for your continued love and support.  Please keep it up, we need you, Declan needs you!!!

Have faith, hope and charity,
That’s the way to live successfully.
How do I know, the Bible tells me so.

Don’t worry ’bout tomorrow,
Just be real good today.
The Lord is right beside you,
He’ll guide you all the way

Dear Bed,

I am sorry that I ever took you for granted.  Yes, we tested many, many mattresses to pick the perfect one. I mean you HAVE to lay on them before you buy them to make sure you get the perfect one…and it was you.  But I confess, I have taken your pillow soft, yet firm, self for granted.  I am sorry.

It’s not like I’m straying, oh no, I could never…but your stand-in at the hospital is just not the same.  Oh he’s better than the chair-bed but not by much.  I mean he IS still a hospital bed and while I appreciate the upgrade from the aforementioned chair-bed; he is STILL a hospital bed.  I mean really, when do you ever hear anyone say, “Wow!  I slept like a baby during my hospital stay!”   Never.  Ever.  So Dear Bed…I apologize to you and look forward to many happy days together in our future.

Speaking of babies sleeping…my dear sweet Declan is resting peacefully tonight.  He had a bit of a rough day with the chemo and finding the right combination to help combat the bit of nausea he encountered today; but we believe the right mix was ultimately found.  Sleep well my baby…Mommy promises to get you a comfy “real bed” when it’s time.  :)

Brady comes for a visit

Stan went back to work this week.  I am awed by his strength because I know every fiber of his being wants to be by Declan’s side.  We made the decision that I would stay with Declan and in doing so, Stan has become our sole bread winner.  A task I know is not light but one I know my amazing husband is up for…and then some.  I believe in you.

Previously, we have been trading off staying at the hospital to spend time with Declan but also to have the opportunity to be home with Will, Brady and Cole; to give them some semblance of a family life with each of us. This week, however, I spent most days at the hospital in part to help Stan be ready for work.  After a few days, Brady said he was missing me…the feeling was mutual…since I was going to be at the hospital for another day or so, Brady came for a visit.

Declan was on a wagon ride when Brady got there and, of course, he wanted to push him.  Oh boy!

FAST…

Ooooooooooooookay…maybe not such a good idea.  Maybe we should make our planned trip to the playroom with Child Life (a wonderful program, and group of young women, who work with the kids hospitalized and their families).  We arrived to find Turley the Magician packing up from his show.  He was kind enough to show Brady a few tricks…it was a first for Brady.  At first I’m not sure he got it…check out his face…

In the end, Turley wowed Brady with the paper that just kept coming out of his mouth.  He chewed up some torn paper and then began to pull out this long string of colored paper…Brady thought it was hilarious but when asked if he would eat the paper, he got very serious and said, “No fank you.” So proud when he’s polite!

After some time in the play room…we painted, played dinosaurs and basketball…we were ready to head back to the room.  It was then that Brady spotted the tricycles and bikes.  Huh? You can ride inside?  Whoa! This place just keeps getting better!…Isn’t perspective great? He was thrilled to learn you were allowed to ride them inside.  (Pediatric floors are great at keeping the kids happy when they’re sick…Declan’s new favorite is the wagon, more on that later.)

And he liked to go FAST! (Thank goodness for the bridge)

Once Mommy finally got Brady off the bike it was time to head back to the room and check on Declan.  He was sleeping so we decided to watch a movie…or moobee, as Brady says.  I must say I was chuckling watching him, in awe of the horrible hospital remote…if you’ve spent any time in a hospital, you are familiar with the clunky, often way too loud, remote which hangs into your bed.  Annoying to the HDTV/TiVO connoisseurs but AMAZING to a 3 year old.

Too funny.  We had a blast watching…Cinderella.  I swear he picked it.  I was happy, don’t get me wrong! :)

And so ended our visit with Brady.  It was a delightful afternoon, one which is sure to be repeated.

The thing about being really sick

We have chatted about how tough Declan has been through this whole ordeal with little to no crying.  Plain and simple, he really is tough.

While this is true but it’s also true that Declan has been really sick during his stay in the hospital.  As Declan has improved and gained strength, he’s also become more vocal…in all good, comes a little bad.

The vocal has been great because our baby boy has been cooing and “chatting” with us a lot.  You’ve seen the pictures…it’s delightful and a blessing to see his little face smiling back at us.  He has also started letting us know when he’s not too pleased.  This has been the case for the past few days…the crying is back.  Mind you, it is still staggering how much he is willing to put up with before he lets you have it.  But it lets us know he’s getting better and stronger.

Honestly, I’m not sure what’s harder…seeing your baby lie there expressionless, looking at you with eyes that reveal so much more about what is going on inside his tiny body, hoping his inner world will be ok just long enough for him to smile at you, just once in that day or listening to him cry out with the full knowledge that in that exact moment he is miserable.  Equally hard, equally limiting, equally heartbreaking.

Today was a chemo day…the biggie day.  I’m not sure if tonight’s crying was the sum of events of the past 45 days (45 days straight in the hospital, wow…insert full body shudder here) or if it is chemo related or gosh maybe he’s teething…sometimes he is just a regular ol’ 7 month old and not a 7 month old with cancer…but in the scope of soothing your child, does it matter?

Tonight I can be thankful I was able to actually pick up my child  (Yay! No machines to prevent it!), hold him for 3 hours and console him.  Because when all is said and done; while he is one tough hombre…he’s also a baby, my baby and one that needs to be held and loved by his Mommy.

Even though the chemo is still entering his body through the IV, thankfully he is at peace and sleeping.  Sleep well, my dear son…I’ll be right here if you need me.

In case you didn’t notice, I’ll point it out….No tubes!