Update and the monster retrospective

Declan has had a great day (still very clingy unless I’m rocking him or in his stroller) but it’s all positives.  He has started back on his feeds and although the first one was a little rough, he’s doing well on the most recent (I’m actually staying up to make sure he keeps it down…so far he’s in dreamland and seemingly beyond the “danger” zone.)  :)

We are also down to one IV antibiotic which is great news.  The cultures are still coming back negative and with the exception of a mild “warm up” today (temp 99.9/100.2…technically not what they consider a fever) he’s been fever free.  If all continues (and they don’t count the mild fever), we should be home this weekend…woohoo! :)

So the monster retrospective…I had another a ha moment today.  It occurred to me, as I was having a C’mon! moment with Declan as I laid him down, happy as a clam and he began to wail.  You all know the moment…you’ve been rocking a deliciously sleepy little baby and go to lay them down and tears.  Pick them up, no tears.  Put them down, tears…you know the drill. It was in one of those moments that I remembered what torture it was when Declan was in the PICU and neither Stan or I could hold him and comfort him.  You cannot imagine (and I truly hope you never know) how hard it is to not hold your baby for any length of time, when he’s inches from you.

During that time, I prayed to be able to just hold him again…and it dawned on me today, that my prayers were answered.  I can hold Declan whenever I want.  Ah!  What bliss!

So have I created a little monster?  Perhaps.  And will there be times when I think, C’mon!, again?  Probably.  But I think more times than not, I’ll think how lucky I am to have the ability to hold him, comfort him and love him.  What a gift we have already been given.

My darling little monster…the one I created.

I am sorry for the delay in writing, I know I kind of left you hanging the other day with regard to Declan (and maybe even my mental state).  I’ll address them in that order.

Declan is doing much better.  He has had a rough few days battling the fever and overall ickiness which comes with being sick.  So where are we?  I may end up repeating a few details here but it’s easier than looking back. Declan ended up with infections in both lumens of his central line.  He also ended up with a nice cough which most likely has stemmed out of the pneumonia (mild case but pneumonia never the less) and it has caused him some breathing issues…not severe but we got back onto the Respiratory Therapists (RT) rounds for about 24 hours (standard nebulizer treatments for those of you out there with allergy or asthma suffers).  We also noticed some crusty deposits by the external central line site and cultured that after a dressing change.  The good news is it came back negative.

The update…Declan’s fevers have broken and his cough has subsided a great deal, enough that his RT today cleared him of needing additional treatments.  This is a great positive step forward from the pneumonia perspective.  His blood cultures have come back negative for 2 days which is wonderful.  I think we might be saving the central line…yay, no additional surgery for Declan right now!  Up until this morning, Declan was being treated with 6 antibiotics to cover everything that was going on and anything that might reveal itself during the cultures and tests.  As of today, we began weening back the antibiotics to 4.  Hopefully, tomorrow will bring more weening.

Oh yes, I forgot to mention as side effect of the antibiotics which could also be another infection is loose stools.  In order to combat that, Declan’s feeds were changed from formula to Pedialyte and then yesterday stopped altogether to give his tummy a rest.  As of today, we’re reintroducing the Pedialyte at a slow rate.  I think we’ll be back up to full feeds of Pedialyte tomorrow and then on to formula again.

Ok…so the reason for the title and the reason I haven’t written in 3 days…is my darling son requires I hold him to get him to sleep and doesn’t want to be put down (all began with the 24 hour fever day…I wouldn’t change a thing there BTW).  I was able to get him to sleep and back in bed earlier but he’s up again (1am) and my wonderful nurse, Susie, is rocking him so I can sleep…so I need to do that.

Bottomline…Declan is on the road to recovery…his Mom’s broken heart is healing with the realization again that every day is a gift to cherish.

I’ll fill in more dots tomorrow…if my little monster allows for it. :)

Please pray for the Thacker family of NC tonight

I’m crushed.  A little girl I have come to know through our search to learn all there is to know about AT/RT, who shared the same diagnosis with Declan and was only a few months older than he, has passed away today.

Little Landyn was a beautiful little girl with a smile as wide as Declan’s, who leaves behind two sisters, Emmalyn and Bailey (her twin) and her loving parents, Rebecca and Mike.

As you can imagine, my heart is breaking for her family.  I’m not sure what to do with all this emotion right now except go hold my baby,  pray for Landyn and her family and pray for a miracle.  A miracle not just for my child (oh how I pray for one) but for all babies and children battling AT/RT and other cancers.  Oh God this is terrible…please no more.

Update

Whew, what a 24 hours!

Declan had lots of blood work yesterday and a couple of things were uncovered…his hgb (hemoglobin) was low at 6.4 (should be north of 7) and one of the lumens in his central line has an infection.  It was later discovered his other lumen also has an infection which was kind of expected based on his condition when we got to the ER.

He received a blood transfusion yesterday morning for the low hgb and since his arrival he has been receiving antibiotics (they add them initially until they rule out infection). Right now he is on 3 different antibiotics. We hope this will clear the infection, if not he will need to have his central line removed until his infection clears and have a new one put in (more surgery). We are praying this doesn’t occur but obviously treating the infection is key.

We’re kind of lucky this happened now while he counts are still high.  For those in the know, his ANC is 3279…for those out of the know :), ANC is a measurement of the body’s ability to fight infection.  The closer the number is to zero the more compromised your immune system is and the more difficult it is for the body to fight infections like this.

Right now, he’s headed in the right direction and seems to be calming down. His heart rate has reduced from a high of 240 (extremely high) to about 175-195 (still high but a huge improvement).

Declan was rather restless yesterday and didn’t sleep too much after being up until 5am in the ER and then on again off again until about 8am.  Thankfully, Stan called my Dad and he came in to help me get some much needed zzzzz’s yesterday.

I should also mention a HUGE thanks to Rachel, my Mom, Stan’s sister Beth, his cousin Donna (gee, I hope I’m not leaving anyone out!) who stepped in to take care of Brady and Cole while we were here with Declan in the ER and then while Stan went to pick up Will.

Big brother, Will has been at BRASS Camp, a camp for kids who’s siblings have cancer, this week (his first overnight camp!) and wanted to see Declan. 

Sidebar… I was all excited to hear about Will’s camp experience.  I’d always wanted to go to overnight camp as a kid and imagined it would be like the movie ‘Little Darlings’ with Kristi McNichol and Tatum O’Neill but I digress. Those of you who know Will, know he can talk the paint off your proverbial walls or he’s a clam.  Yesterday, he was a clam.  He was very excited to canoe and was able to do that at camp…best part was the capsizing they did on the last day.  He also took part in learning how to cook outdoors over an open flame campfire…cool stuff and he learned to make s’mores the REAL way, not over some gas grill in the driveway. :)  That’s it…and that was after much probing by Mommy.  The food?  Good.  The friends?  Nice.  Sleeping in a big cabin full of people?  Ok. (I did get an extra “It was hot.” after that question.)  Sheesh…these are the times when I wonder what it would be like to have a girl.  :)

Will, came in yesterday to see Declan and as is always the case when Will is around, he was able to coax a couple of smiles out of  Declan…and there weren’t many yesterday.  He read to him out of his favorite book too.

Declan was also a bit cheery in the evening during shift change when a bunch of his favorite nurses stopped by to say hi and get some Declan smiles.  (Boy, sometimes it’s hard being Mommy or Daddy…we get the whines and cries on the “bad” days but it’s awesome to know the smiles aren’t too far from the surface.)

I mean really, look at this…it’s like the King holding court!  😉

He finally settled down last night at about 11 and slept until 4am.  After a very full diaper change at 4 (he’s getting incredible amounts of fluids to help with the infection), we played for a bit and then I rocked him.  Declan slept on and off until 8:30 when Grandad and MeMaw came in with much needed coffee for me.  MeMaw held Declan for a big chunk of the morning and we realized it was the first time in months that she’s been able to hold him…a real treat for them both.  As you can see, Declan was pretty comfy in MeMaw’s arms.

So what’s next?  We will be here for at least the next few days to watch the infection and get him more stable.  To be discharged, he will need to be blood culture negative, temp free for 48 hours and his counts (ANC) will need to be above at least 500 for us to leave.  The last one sounds easy enough with an ANC of 3279 now but it’s amazing how quickly the ANC can drop post chemo and how slow it moves back up.  So we’re hopeful the stars will align and we’ll be out by mid-week.

See?  Busy 24 hours…whew!  I need to go now…Brady’s on the way in and he’ll want my full attention.  Have a nice Sunday everyone.  :)

Temp of 104.7

By the time we got to the ER, Declan’s temp had risen to 104.7. Wow was all I could say, I was so surprised. His heart rate was also through the roof because of the fever. We are being admitted for observation. Right now he’s resting peacefully with a temp of 100.2.

Right now we’re watching his low blood pressure to make sure he doesn’t have a septic infection.

He’s sleeping so I need to try too. Will post again later today.

Ugh…on our way to the ER

Declan has been super sleepy since we’ve been home and we’ve written it off to all he’s been through lately… radiation, new round of chemo, you name it – it’s all big. Today he seemed a little more sleepy and was throwing up some, enough that we called our Oncology group. Since he still seemed hydrated, no fever and his labs yesterday were good we decided to watch him. Well he spiked a fever (100.5) about 11 and after consulting with our doctor, we’re en route to Fairfax.

Hopefuuly his counts will be ok and maybe we’ll head back home…somehow I doubt the last part though. We’ll keep you posted.

The beginning of a new chapter in our treatment

Yesterday I sat down with our Oncology Doctor, Dr. Dean, to review the remainder of Declan’s treatment road map.  Stan and I wanted to gain a better sense of what to expect now that radiation is over.

Essentially, the remaining road map is less intensive.  He will be receiving chemo every 3 weeks and barring any issues with his acceptance of a few of the new chemo drugs he will be receiving; we should be out patient for the remainder of his treatment in ending March 2011.  In addition, Declan will have MRI’s at 1, 3, 6, 9 and 12 months (the 12 month will be at MD Anderson with his Radiation Doctor to be shared with our Oncology Doctors all others will be here). After the year, he’ll be re-evaluated as to whether they continue every 3 months for another year or spread out some.

It’s hard to believe we will not be spending as much time here at Fairfax.  I’m actually waiting for discharge paperwork as I type this. While I’m glad that Declan will be able to be home with everyone (his Mommy is VERY excited about this part) I have this sense of melancholy for the folks we will not be seeing on a regular basis; both patients and caregivers.  To say they have become special to us is an understatement.  I certainly feel as though some are an extension of our family because of the bonds we have formed over the months Declan has spent within these 4 walls.

I’m not sure how to explain this feeling, I kind of feel as if I’m going off to high school or college or walking into my first job…the anticipation and excitement of being home is mixed with a little anxiety over knowing it’s just me and Stan every day from now on caring for Declan and making sure he’s safe and comfortable.  That’s probably more dramatic than it needs to sound…I mean, we’re not being banished to some far off island where we’ll be on our own…a la Lost, minus the weird black smoke and people trying to kill us at every turn…we’ll be coming in for weekly count checks with our Oncology Group and visiting with Physical, Speech and Occupational Therapy every week. But it will be different.

The good news is this marks a big milestone for Declan, at least in our book, due to the less intensive treatment days.  We’re hoping for easier times on his body and perhaps a return to more normal days of being a baby (at least on the off weeks).

My jubilation at our milestone is tempered, however, by the knowledge that 2 little girls, ages 2 and 3, were just diagnosed with Leukemia yesterday on Declan’s floor.  I hate to know another family has been hit with this debilitating news.  I pray only the best for these girls, their families and all the others families like ours battling this beast.  In fact, I pray for these kids to return to their ‘norms'; a return to tea parties, learning to crawl, making mud pies, pool parties, football practice, riding bikes…heck, to just being a kid.

Uneventful day

Today was a pretty uneventful day from a medical perspective.  Declan has been really stable this hospital trip and it is nice to see him handling his chemo so well.  He has one last dose of chemo tonight and assuming all goes well, we should be home tomorrow.  Woohoo!

We were treated to visit from Grandad early in the day for coffee with Mommy and some QT with Declan.  Then Nana and Grandpa came by in the afternoon.  Nana and Declan spent some time playing.

He loves his Nana!

Declan spent a decent amount of time sleeping today.  Some days are just more sleepy than others.  It could be chemo, could be cumulative radiation, could be teething but boy oh boy was he sleepy today.

After nap number 3, we headed over to visit with Leighton.  We had a nice time in the playroom and I think Declan took a shine to Leighton…although he fell asleep in the middle of their date.  Oops! :)

The rest of the afternoon was spent here snoozin’ and more snoozin’.  During one of our more awake periods, Declan was very interested in helping his nurse, Brooke, do his medicine.

From then on it was basically a chill night.  Declan slept on an off until he decided to call it a night at 10:30.  We hope tomorrow brings news of our discharge and the beginning of a good spell at home.

Yesterday

Sorry for the delay…Declan woke up at 5am yesterday and Mommy fell asleep as I was getting ready to post last night.  Note to self, don’t sit in the bed to post when you’re sleep deprived!

Yesterday was more reuniting with old friends and meeting new…Declan was sleeping but I was able to meet dear sweet Leighton Kraus.  What an angel!  Her Daddy was right, she is doing much better.  We plan on loading up the wagon and going to visit her in her room.  You may recall me talking about Leighton who is battling encephalitis (swelling of the brain – her’s caused by infection) and who’s Mom, Claudette, is also going through her chemo treatment right now for breast cancer…check out their blog at http://kickincancer.wordpress.com/author/kickincancer/.  Really when you think you have it bad (myself included), you really don’t.  I can’t imagine caring for a sick spouse AND child at the same time.  Although Claudette has just finished her treatment and has beat the beast.  Woohoo!

As was our previous routine, Declan and I decided to load up the wagon and took a few spins around the 5th floor to see our old friends.  Ok, he didn’t have much say in the decision but enjoyed it just the same…

Declan is handling the chemo just wonderfully and has had no episodes of vomiting (knock wood!).  We learned yesterday that the remainder of Declan’s treatment, while long, is not supposed to be as hard on him as the front end of his treatment.  This is such a relief.  It has been really hard to work on introducing food orally and Physical and Occupational Therapy while he’s getting sick or nauseous.  Hopefully, we’ll start to make some real progress there and get Declan and Cole back to the “competing” twin thing sooner than later.  Ok, that is an aggressive statement.  That’s our long term goal.  Short term, we’re still working on improving head control, rolling and working up trunk strength as well as crossing midline with his hands.  Declan is making progress so we celebrate each small step he makes.  As these milestones are hit…trust me, you’ll know!

Daddy and Brady came last night to visit and bring us dinner.  Brady is very comfortable with the set-up here at Fairfax and was sitting in my bed watching TV (or TB as he calls it). Declan was in a bit of a fussy mood.  I was struggling to figure out what was up with him so I looked at Brady and thought what the heck and put Declan in bed with him.  I’ll let you see for yourself if it was a success or not…

Sibling’s really are the best medicine!!