Wednesday, June 2nd, 2021

Day 33 - Not What We Had Expected

Declan is 7 months old now and will begin his 2nd round of chemotherapy today.

At our most recent clinic visit, we were anticipating a 3 to 4 day stay in the hospital, so we had packed accordingly. Only to find out that Declan was receiving 3 drugs today (Carboplatin, Cyclophosphamide, and Doxorubicin), and we would only need to stay at the hospital one night. 

I mean, I'm not complaining, but we came PREPARED.

Last time we took a trip to the hospital, what turned out to be a potential overnight stay at the ER turned into a 2 week ordeal leading to a diagnosis of Neuroblastoma. We left nothing to chance.

So finding out we only were staying a single night left us feeling a bit silly, but nonetheless, this is a good thing for our family as we can return home as soon as possible and not need to stay any longer than we need to at Children's Hospital.

So much has happened since our last update:

We've had such an amazing outpouring of support from friends and family members. From the GoFundMe that Jennifer's sister had set up for us, to the Meal Train Jennifer's friends and coworkers had organized. 

Support also came from Em and Pey's Slime Factory. If your children enjoy playing with slime (or if you're an adult who simply LOVES slime) then please go support this business. They've been nothing but kind and supportive of our family throughout this diagnosis. Here is a video of Jennifer and Lincoln making a HUGE slime bubble - 

@jenjack72410

##slimebubbles ##fyp

♬ Lofi - Domknowz

Over the Memorial Day Weekend, we had the chance to spend time with family and relax at Yogi Bear. With the days we've been having, this little guy spent his vacation time getting some much needed R&R.

Declan even got the chance to be held by Auntie/Cousin Becca!

Declan is rolling around like it is no big deal, just like he had done prior to his tumor pressing on his spine. Here is a video of this wild man crusin' around his crib at the hospital - 

On a bit of a more somber note, Declan has been having issues keeping down food with his NG tube. We've struggled to feed him the dietician recommended 28 ounces of food a day to help him catch up in weight. Even after feeding him a small amount (around 3 ounces) over a long period of time (nearly an hour and a half) he would projectile vomit his entire feed. 

Needless to say this has given us copious amounts of onesies to launder.

But, we can't complain too much now that we've seen such a dramatic change in our little boy's overall personality.

We've sort-of discovered that Declan isn't bothered by extensive feeds while he is unconscious. 

So we'll have to start trying sneaking feeds in while he naps (which should be easy, as this kid sleeps like a rock).

Confession time:

I love snapping pictures of Jennifer and Declan asleep. 

They are basically sleep twins, and it is one of the most adorable and endearing qualities these two share. 

It would be adorable to see momma and baby sleeping in similar positions, wouldn't it? 

I can't imagine anything could go wrong if a page were to exist that displayed the adorable photos of our family napping. 

Anyways - This 2nd round of chemo will surely wipe Declan out. We also should be expecting to see some dramatic changes in his appearance soon. 

Declan's first haircut will arrive much sooner than either one of us would have wanted - but it is a small price to pay to have our little guy happy and healthy.