…watching tears roll down Declan’s cheeks because he’s nauseous or knowing he has 2 more days of nausea enducing chemo ahead of him. Equally horrible, really.

I’m holding him now to help him sleep and typing with one thumb on my iPhone so I will make this short and close with Brady’s nightly prayer…I love it normally and am keeping it close to my heart prayers tonight…
“Name the Father, Son, Holy Spirit Amen. Please make Declan better. Name Father, Son, Holy Spirit Amen.”

Radiation postponed due to broken Gantry

We received a call late last night that the Gantry (the Proton machine) Declan is assigned to (he has to go to a specific one because of how it’s calibrated for kids) is not working and they would call in the morning to provide update.  This morning they indicated it would be down for at least 2 days and they would work to make up his missed appointments, possibly on weekends.  So we got to sleep in today!  J

After a nice breakfast at the hotel with everyone, we headed off for our scheduled labs to see if Declan’s counts had recovered enough to be hit with a big round of chemo.  Essentially the chemo kills off the good and the bad cells.  If we don’t give the good cells a chance to recover, then it is harder on Declan’s body because it would already be in a depressed state.  As I understand it, the longer he’s on chemo the longer it will take each time for his body to rebound.

We arrived at the clinic and waited for our results.  They always seem to have something cool going on here to let the kids know they are loved and to give them a chance to be kids.  I kind of feel bad for Declan because in most cases he has no idea what his silly Mom has him participating in but I feel like I should include him in all I can.  Today, there was an Artist in Resident there who was helping the kids paint/draw pictures.  I watched him with the kids for awhile and he really was great with them and seemed to know exactly what to say to draw out their creativity.  He also indicated the artwork would be used to make a larger collaborative piece…pretty cool, I thought.  So I brought Declan over and he painted his very first picture.  I didn’t get a picture of it but I must say, it was quite a fetching water color!  Plus it helped pass some of the waiting time. J You’ll see it if you every come to my house, I’m sure I’ll display it. J

His counts were looking really good so we were admitted.  Tonight he is receiving the drug I dislike the least for what it does to Declan.  It really has some nasty nausea side effects which can last for days with him. L  They do things a little different here than from home but I think we’ve come up with a good combination of drugs to combat the nausea on the front end and during the treatment.  He seems to handle it much better if we start those drugs before the chemo is hung and run it throughout.

Over today and the next 2 days, Declan will receive 3 different types of chemo…2 via IV and one through his VP shunt in his head or interthecal.  The IV systemically attacks the cancer while the interthecal works on the tumors still present in the cerebral/spinal fluid.  This is the “hold the button” chemo day so I expect tomorrow will be a bit tiring.  Hopefully, Declan will sleep through most of it.

Since we were unsure as to whether or not we’d be admitted, I didn’t bring our suitcase with us so Stan and Brady came around 7ish to give me dinner and bring our stuff.  Brady has stepped in where big bro, Will, left off in entertaining Declan at the hospital.

Well the Proton center called in the late afternoon and said we are on for treatment tomorrow but we’ll be going to a different machine…apparently our machine is broken enough to warrant re-calibrating another.  Since our chariot will be arriving at O Dark Thirty…I’ll close with a great nighty-night picture.

Well, maybe we’re crazy…or maybe we’re just trying to be “normal”…or maybe these 4 hotel walls are closing in on us and really how many trips to the pool can you take? And Declan typically doesn’t join us for those…it’s so darn hot here, we’ve tried to keep him cool and indoors.

So today, we decided to take the whole clan to the Aquarium.  I mean it’s a perfect pick for two reasons.  First, MD Anderson has a great number of aquariums throughout many of the lobby’s and waiting rooms…and Declan is a huge fan.  I honestly think we’re going to need to get one.  I mean he just loves them.  So easy pick for this reason.  Second, it is inside and cooled by lovely invention of air conditioning.  Houston is hot.  I mean Africa hot…and it’s June.  DC is hot in August but it’s June but I digress.  Since we haven’t had Declan out for much longer than a 15 to 20 minute stint beside the pool after 6PM, this was important.

After we watched the Germany v. England World Cup game…our Au Pair, Rachel, is from England.; we headed out.  Bummer of a game for her…but at least we were both eliminated in the same round so we’re both in the same boat.

So off we went.  Within the first few minutes, we were thrilled to see Declan excited and into it.

Checking out the first fish tank…he was all smiles.

From there we moved through the exhibits…here Brady and I are smiling up at Daddy through the viewing “bubble” in the bottom of the tank (we were actually sitting on the ground).  You can kind of see one of the sting rays floating by the bottom of the frame.  Brady thought I was nuts when I told him to go underneath (I mean really, he looked at me like are you insane…he’s 3, it’s an odd feeling to get that look from someone his age) so I went under and waved up at him and Daddy.  After that, he went with me willingly and was all smiles when he saw Daddy through the bubble too.

He also thought the underwater outfit was funny.

Strangely, there was a white tiger exhibit at the end of the aquarium tour.  The tiger is by far my favorite animal so I didn’t question the why’s of it at an aquarium.  We were treated to quite a sight!  One of the 2 tigers was walking back and forth and right on the other side of the glass.  It was pretty spectacular.  Brady is definitely my son, I think he and I could have watched the tiger for hours…Rachel too.  They are such majestic creatures.  I’m always torn at stuff like this…I mean on one hand it’s amazing to see wildlife up that close but I do feel sad for the animals.

Here he is…so amazing.

Oh I’m just kidding here he is…

Isn’t he a stunner?

After this we decided to head outside for the train ride.  It takes you through a shark’s tank and Brady really wanted to see a shark.  Ooooooooooook, I assumed the train ride would begin inside…wrong!  OMG, it was hot.  Thankfully, Declan fell asleep shortly after we got outside.  Cole seemed not too bothered but he really loves to look at new things.  The rest of us were just melting.  Thankfully, the wait was in the shade.  Finally it was our turn.  Here we are!

It was very cool to be in the shark aquarium tunnel.  Brady was brave but you could see he was processing how in the world we would be safe with all those sharks “swimming” around us.

After that, we headed to the games…I mean, what day out with the family wouldn’t be complete without an over priced game for a cheap prize?

Brady “fishing” for his prize…

Declan and Cole were unimpressed but supported their big bro!

While there were a few bumps in the road, they were in line with what we are used to and all in all it was a great day.  A great family day out.  We missed Will today but know he’s having a great time with his cousins back home in Virginia.

Tomorrow, assuming his counts are up, Declan will most likely be back in the hospital for his big chemo week.  I’ll update as soon as I know.

Have a great week!

First let me say…I’m really sorry for the delay in posting again.  I very much appreciate the feedback and support we have received from all those walking Declan’s Journey with us and will try to do a better job of getting online each day.

So to catch you up…

Tuesday -

We were up early for our ambulatory trip to the Proton Center and our weekly “see” with Declan’s Proton doctor, Dr. Grosshan.  Each week we have an appointment to see our Radiation doctor to make sure everything is going well with Declan and the treatments.  So far he is pleased with how he’s handling the treatments!  This is me and Declan waiting to see the doc.

We headed back to the hospital and were pleased to learn Declan was getting released!  His counts had come up and his vomiting was under control.  Woohoo!  By dinner time, we were home and with the family again.  :)

Wednesday….

We were up and off again early to the Proton Center.  Ok, so I used to work…there fore, I’m used to getting up early…or I was.  Those early morning wake-ups for the Proton Center are just so hard.  I’m sure it had to do with the 2-3 times a night I’m up giving medicine, turning on his feeds or comforting Declan back to sleep at 4am.  What is it about the 4am to 5am time frame that entices Declan to get up?  I mean, it’s almost like clockwork.  Some days I’m more lucky than others and he’ll fall back asleep with little fanfare.  However, most days it requires a decent amount of rocking (without my trusty dusty, awesome glider I might add!), singing (ok, humming…I’m a terrible singer!) and just about what ever will get him back to sleep.  Any way…complain, complain!

So after our treatment, we head over to the main building (one of these days I’ll write about Texas Medical Center…it’s huge) for our weekly appointment at the Children’s clinic, our local Oncology team.  The appointment is at 10 so we get our labs pulled and after a short wait (miracle!) we head back to the room to meet with our doctor.  During our appointment, we reviewed Declan’s blood work and the decide a blood transfusion is in order to maintain his counts about the optimal levels for kids receiving radiation and chemo.  We are also due for our big chemo on Friday but Dr. Vetts, the stand in for Dr. Wolff while he’s out of town is concerned about his counts so he wants to see how he does before we get admitted for this round to begin.  Ok, sure…no problem.  So they leave the room and I get Declan to settle down for a nap.  And he slept…for about an hour, then it starts to dawn on me that hey, they may have forgotten about me back here.  Long story short and after walking Declan in the halls, they realize that I was indeed forgotten.  Now, I would have said something sooner but Declan hasn’t gotten blood in the clinic yet so I had no idea where we would get it…plus he was sleeping.  The old adage is true…you don’t wake a sleeping baby.  I have learned the hard way on several occasions during our stay here that statement is true.

So we head out to the waiting room to wait for his blood to come up.  (Insert whistling here)  And we waited.  (More whistling)  I’m starting to get light headed at this point and let them know I’m running down stairs to get something I can eat in the room with Declan as he’s getting his blood (which is a 4 hour process when he’s in patient here).  I race downstairs and back up to the waiting room, and wait some more.  Finally at about 3pm…yeah for those of you paying close attention, our appointment was at 10…AM.  The good news is they are going to give him his blood in 2 1/2 hours instead of the normal 4.  Woohoo!  Thankfully, Declan was tired and before they even hung his blood, he was asleep in the bed.  (Sidebar, the room was like a mini hospital room with a bed and tv.)  So I ate lumch, more like linner, and decided to read for a bit.  I would like to use times like these to blog but their internet is awful and worse no connection in some places, like the clinic. About an hour and a half in, Dummy here, realizes she could snuggle up next to Declan instead of doing the head bob in the chair in the corner.  And so I did.  We had a nice little cuddle and nap for about an hour.  It was lovely.

Declan woke up just as his blood was finishing and after the obligatory 30 minute reaction wait time, we were on our way home again.  Woohoo!

Grammy was kind enough to sit with Declan while Daddy, Cole, Brady, Rachel and I went swimming.  Brady has become quite the Aquaman…he really is doing quite well.  Cole just splashes non-stop, laughing all the way.  It was a nice time.

Thursday…

I’m looking forward to today…we have our Proton appointment and then nothing else.  Ahhhhhhhh!  This is going to be great! A day of nothing.  Heck, I’ll even be able to go to breakfast with everyone back at the hotel (because it’s only 8:30).  Woohoo!  (You sharp tacks in the group are probably sensing the sarcasm here.)

Soooooooooo, I get back to the hotel and a call on my back lets me know I’m in time to meet everyone downstairs for breakfast (they do a great complimentary spread).  I pull into the parking lot and here’s where my morning goes south.  Actually, my morning going south, pales in comparison to Declan’s. Not trying to scare you, he’s fine now but well, you’ll see. Ok, so a little refresher…Declan doesn’t consume food orally right now, he’s fed on a g-tube (those of you who’ve had experience with a g-tube probably know where I’m headed with this).  The g-tube was surgically inserted into his tummy through his abdomen and we give him formula through the tube.  The tube is actually connected to a “button” which sits on the outside of his tummy, is connected through to his stomach and is held in place by an inflated balloon on the inside of  his tummy.  No stitches.  It’s pretty amazing actually.  It kind of healed like a pierced ear would.

Declan can’t eat for 8 hours leading up to his radiation therapy so I’m pretty keen on hooking him back up when he comes out.  He has this little backpack thing that houses the pump and his food which is fed through the tube.  We have to be careful to make sure the line is protected to ensure it doesn’t pull on the g-tube or horror of horrors, get caught and pulled out.

Ok soooooo, I go to get Declan out of the car (now you all probably know where I’m going with this…horror of horrors) and his tube has slid into the seatbelt holder place for his car seat carrier…no problem, I see it and move it but it slides back into place.  Harmpf, ok, I’ll hold it with one hand away from the seat belt thing while I put Declan in the stroller….problem solved.  Yeesh, I’m getting the shivers again as I get ready to type this. So I lift him up and turn to put him in the stroller and he lets out this amazing yell.  At the same time I feel my tummy getting wet…and horror!…I see the g-tube button, still attached to the tube, laying on the ground.  OH MY GOD, I’ve just pulled out his g-tube!!!  I am freaking out.  Declan is not too happy with me either as I’m trying to lie him down in the front seat to assess the damage.  Thank you God, it’s not bleeding and thank you Cristi for the Emergency GT kit!!  Honestly, I was loosing it mentally at that moment because I had caused Declan unneeded pain.  I call Stan in a panic and tell him to come out to the car to help me.  Honestly, the Emergency kit pulled me into action…so the deal is if it gets pulled you have to put something in it’s place or it can close back up (you have some time here but not a ton but a few hours) and another surgery would be needed to replace it.  UGH!!!  So I get the tubing out of the kit and with a deep breath, I inserted it into his tummy, apply gauze and am taping it in place when Stan shows up.  I pick Declan up and am able to console him enough to get him back in the stupid car seat so we can head to the ER.

Now I recall being told it’s not uncommon for this to happen and Stan is kind enough to remind me of this but all the way to the hospital I’m feeling about as low as anyone can feel…still feel pretty bad about it to be honest.   Once at the ER, we are brought to a room where a surgeon is called to come assess the damage.  After some time there, the surgeon comes in and she is as nice as she can be.  She checks him and all the while she’s coaching us on how we can potentially replace it ourselves if it happens again (yeah right!).  We both watch as she puts it back in and inflates the balloon back up…and we’re good to go.  I shudder at the thought of it happening again but if it does I imagine I’ll feel comfortable putting it back with her tips.  During the whole process Declan either slept or flirted with nurses…he’s amazing.  Here his is sleeping with the repair kit in place…

Here he is in the car on the way home…

BTW…although I think it caught on something else, the offending seat belt holder areas have been taped up….I actually did it in the car on the way to the ER.

The remainder of the day, we took it easy…lots of napping in Mommy’s arms for Declan.  Honestly, he did really good the rest of the day.  He’s such a trooper.  (He’s TOTALLY getting an extra present, or 2, from Santa this year for this!)

Friday….

So we headed off to our early morning radiation and then we’re on our way to the clinic for another blood test to see if Declan’s counts are strong enough for him to be admitted for this round of chemo or if we need to wait until Monday.  After his blood is drawn, we wait for it to come back and then we head back to the room.  My Mom was with me and I snapped this picture of Grammy and Declan playing.  I love it!

After some debate with the doctors about when Declan’s next big round is supposed to start…his original doctor was back on Friday so we went over the calendar and confirmed he was supposed to get the big round.  He was under the impression it was next week.   At any rate, his counts were still low so they are delaying the big round until Monday to allow for his counts to come back up.  So Monday we’ll head to the clinic after his radiation and most likely will be admitted.

We did still get his Vincristine Friday so we had to wait a bit for it to be ready.  Mom and I went back into the room where she snapped this picture of me with him.

He really does handle a lot of this so well.

So after another loooong day, we all headed home for the day.

Saturday…

Today was a relaxing day.  We were contemplating a few things but ultimately decided to lay low.  One reason is because we were taking my Mom to the airport.  After a month, my Mommy had to head home.  It was tremendous to have her here.  She worked all day, every day, (along side Rachel) to help keep Brady and Cole happy and fed and clean and amused…all the while, cleaning up and doing our laundry so we wouldn’t be burdened with it.  She was such a huge help and we were sad to see her go.  Me especially, I enjoyed the time we shared here.  Thank you Mommy!

So now, you’re caught up…I will try my very hardest to keep you updated at least every day or two…I won’t go 4 again.  Promise!

Oh yea, I almost forgot…Saturday was the boys 10 month birthday.  so hard to believe it’s been 10 months.  In some ways, it seems like yesterday and in others it seems like an eternity.  Happy Birthday sweet boys…here are the birthday boys!

…I keep meaning to and the time gets away from me, I’m exhausted or events turn in a way I wouldn’t have predicted.  The important thing  is Declan is doing well.  He has been out of the hospital since Tuesday and has been doing great.  I promise to update you on everything tomorrow.  Tonight, again, I’m tired and need to get in bed so I’m ready for my 5:30 wake up to get to the Proton Center for Declan’s 7am therapy.

We continue to appreciate and feel your prayers.

Declan has been inpatient since last week’s fever, low white cell count and subsequent vomiting.  Today was his first day with a normal pattern…we’re hoping tomorrow will be out patient for us but we’ve come to know anything can happen.

For now, he’s resting comfortably.  I was worried that our 4 and 3 hour naps (his and mine, respectively) today would wreck tonight’s sleep pattern.  Declan is fine…his Mommy needs to just lay down and try to sleep.  The 6am pick up for his radiation is rough and comes so much earlier than it seems it should…I think it’s the room darkening shades…Love them!

This weekend we were treated to a visit from a dear friend from high school who lives in Dallas.  It was so nice to spend some time with Robin even if it was at the hospital.  Mom did talk me into going back to the hotel for awhile to have a swim with them…it’s a nice break after a few days at Hotel MD Anderson.   My dear son, Brady, was rather taken with Robin and announced to me that he was going to live with her for the next 5 years.  Harmpf!    We are looking forward to our next visit but I’ll have to keep an eye on Brady when they head out!

Good night friends.

As you have come to know, family is extremely important to me.  We make a big deal about all things family…we celebrate who we are and what we have.  My husband is particularly good at this and today is the day we should be celebrating him…but we’re not all together.  We’re spread across 2 states, a hospital and a hotel.  Since today is about family, I wanted to share a wonderful gift recently given to us by Johanna Waisley.

The gift?  You see, we’d never had any professional photos taken of our whole family.  Those of you who know what a photography junkie I am, know this was causing me angst.  Johanna reached out to me, a friend of a friend (whom I now consider a friend), asking if she could take pictures for us.  I wasn’t sure how we would be able to swing it but it became increasingly important to me to try.   It was a bit tricky to find a time that coordinated with a Declan “good day” but the Friday before he headed to Houston, we found our day.

The email below gives the link and password access to view our pictures.  I absolutely love the pictures…they capture the essence of each of my children and our unique situation in a beautiful way.  We are so grateful to her for her gift.  (I left her contact information…just in case anyone is in need of a great photographer.)

So as Stan and I sit miles away from each other, a bit melancholy about the distance…we’re finding comfort in the memories of a beautiful day, as a family.

For all your professional photography needs, please contact: Simply CreateAshburn, VA 20147 (571) 223-1938 www.simply-create.com

My Daddy is the best.

My Daddy helps me put my toys together.

My Daddy builds me cool stuff, like my swing set and the bike ramp Mom isn’t too fond of.

My Daddy is always there to cheer me on in any thing I do.

My Daddy is a really good cook…thank God because if it was up to Mommy we’d starve or eat Kraft Mac n Cheeze twice a week.

My Daddy taught me how to ride a bike.

My Daddy is funny.

My Daddy loves life and enjoys it to the fullest.

My Daddy is a hopeless romantic…Mommy loves this about him!

My Daddy stays at the hospital with me so I’m not alone.

My Daddy throws me in the pool and it makes me laugh.

My Daddy takes me to the movies.

My Daddy comforts me when I’m sick.

My Daddy is my hero.

My Daddy plays basketball, football, golf, hockey, baseball, soccer and lacrosse with me.

My Daddy hurts when I hurt.

My Daddy watches Dora with me…the same one, over and over and over again.

My Daddy takes naps with me.

My Daddy holds me up high so I can see the things my little legs won’t let me see.

My Daddy does things he doesn’t really like because it makes me happy.

My Daddy listens to 99.5 so he can be up on all the cool new tunes with me.

My Daddy’s wife hopes he doesn’t mind that last one!

My Daddy makes every birthday and holiday a joyous event.

My Daddy makes the best grilled chicken wings.  Yummy!

My Daddy loves with all his heart.

My Daddy does so many wonderful things with and for me.  God has blessed me with my amazing Daddy.  I’m so lucky to have him!

Happy Father’s Day!

To the man I love.  My hands were a little tied this year for shopping and gift preparing but when you look here in the morning, I wanted you to enjoy these moments you shared with the boys over the past 6 months or so (for as long as I’ve had my iPhone).

Happy Father’s Day to the most amazing Daddy!  Love, your boys

…tonight Stan and I officially became, gulp!, middle school parents!  (insert classic ‘who done it’ music here…dant, dant, DAH!)

I mean, didn’t Will just start Kindergarten?  Look at how cute he was…

(Yes, he’s still cute!)

That’s him with our sweet dog, Naomi, who is now enjoying her days on a farm in Culpeper…Brady was allergic so poor Naomi had to pack up and move.  It was a sad day in the Carmical house (actually the neighborhood…Nancy, as she was nicknamed, loved to play with all the kids).  I learned recently that Naomi is loving her new life on the farm.  But I am really digressing here…I miss her.

So back to Sweet Willie…and he is sweet.  We are blessed.  He’s the kid who walks in the room and within in an instant his presence is known…for two reasons; 1) he’s louder than the day is long…I love you son but face it you’re loud and 2) he has a personality that will not quit.  He’s infectious and not afraid to talk to anyone about anything (we’ve tried to reign the ‘anything’ part in but it’s his nature to just ask what’s on his mind).  Really, he’s a delight.

This year has been quite a year for Will and he has done a fabulous job.  First, he switched schools to the local elementary school.  I wasn’t sure we’d have the opportunity to really feel part of a new school family given that we had not “grown-up” there…wow, was I wrong.  Mill Run welcomed Will (and us) with open arms.  We were very blessed from day one with a true sense of belonging.  They have been wonderfully supportive during Declan’s illness.

Will also became a big brother again x2 this summer with Declan and Cole.  He has really taken it in stride…he went from being the only child to having 3 little brothers almost over night.  I’m sure there are days where he thinks, “Gee, did I really pray for all these other people to take up time with my parents?”  But he has been very understanding about the time he shares us with them.  Ok, for the most part!

And then this happened.  Talk about your apple cart getting upset.  Will has probably taken the brunt of it because, well, he’s older and he “gets” it.  Brady has the most basic of understanding but really not and of course Cole is oblivious.  So Will has even had to take a further back seat from an attention perspective this year.  He went from us being at everything to one of us trying really hard to make it to the game, etc.

You would have thought he would have rebelled in a major way or at least we would have seen a drop in his grades…it simply did not happen.  He even made some of the best grades he’s EVER made!  Now I can attribute some to the amazing support system around him but I really have to give Will the credit.  It would have been easy for him to fold up shop and throw his hands up in the air, but he didn’t.  He’s been really quite amazing about it.  As I type this, I’m realizing how much more he’s had to deal with than I probably gave him credit for…well, because it “gets” it.  How unfair and yet the arena we find ourselves in.

So Will was on my mind a lot because he graduation was tonight…and I missed it.  I haven’t missed anything major of Will’s.  It was very hard.  Stan was awesome and was sending me pictures and videos which I loved but opened up the flood gates each time.  Such a big boy and still my baby.  I know he understands why I’m not there (thank God Stan could be!) and how very proud of him I am but it was still hard.   I can’t wait to hug him for myself!

Congratulations Will!  Mommy and Daddy are very proud of you and all you have accomplished.  We look forward to learning all about middle school with you next year.  Go easy on us, eh?

Will before Graduation…

Will with his graduation present…yes, a cell phone…

…yeah, I still can’t believe it either.  Had this not been going on I imagine we might have held out for another year or so but it really will be great to be able to text with him, especially while we are in Texas.

Here is Will’s awesome teacher, Mrs. Williams

She has been so wonderful to Will and us.  (If you would, please say a prayer for her Step-Mother who is also battling cancer…she found out around the same time we did.)

So again, congratuations, Will!  We are very proud of you!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Update on the “other” boys….

Declan had a pretty slow day after his radiation this morning and rested on and off all day today.  One of his blood cultures came back with very small growth.  It could just be contaninant from the blood drawal but we won’t know until tomorrow…which means we will most likely be here another night after tonight.  Ugh.

Mom and Rachel took Brady and Cole to Kemah Boardwalk outisde Houston…here are a few pictures Rachel sent today.

Brady riding an airplane ride.

Brady on the Carosel enjoying the up and down!  I mean can’t you just eat him up with that smile? 

Coleman at lunchtime!

Ok, my eyes are barely staying open…so I’ll close.  Have a great night cyber buddies!    God Bless!