Friday, May 21st, 2021

Day 21 - A Core Dilemma

Declan had just finished up his 2nd visit to the oncology clinic,

Only this time, he has learned a new trick.

Declan is sitting (somewhat) unassisted! 

This is certainly a celebratory milestone as these core muscles need to get strengthened in order to help him thrive down the road.

Much has happened in the last week. Mainly, Declan is remaining sock free for about 100% of his day. We did have 1 NG tube pulled out, but Jennifer re-inserted a new one like it was no big deal.

#NoBigDeal

Declan's big brothers are happy to have him home. Lukas has taken a few opportunities to read to his baby brother:

As well as entertain him, as only brothers can do:

Declan's smiles and laughter is a welcome change from his lethargic behavior in the hospital. We are starting to see glimpses of our baby boy again. 

Hopefully this means he is feeling somewhat better.

Declan is still struggling to take much from a bottle as his final doses of steroids was yesterday.

We never thought we'd miss the ROID MONSTER, but we certainly miss his appetite.

Because Declan's blood counts looked good at his appointment, he no longer needs his G-CSF injections. Turns out, his white counts were particularly high (which could have made him feel a little bit crummy).

He has a lot more mobility in his lower extremities and is starting to bear some weight on his legs like he used to. 

He has been having an issue with gagging and spit-up. At our appointment, the doctors reassured us that this wasn't due to his chemotherapy. Instead, this could just be a result of his increased volume of food and his reflux. 

The dietitian suggested we scale back to 28 oz of fortified food (24 kcal/oz) a day, down from 30 oz, as he was also "growing a little too fast" for their comfort.  

Go figure. 

Declan had swelled up faster than a carnival balloon animal.

He's gotten so chubby, he's been mistaken for the Michelin Man's son.

When Declan sit's around his crib, he sits AROUND his crib.

Declan's diet now consists of nothing but butter, because he is mostly rolls.

His cheeks resemble that of a chipmunk that is unsure of when his next meal will be.

... wait wait... one more... one more...

Whenever Declan sits in a highchair, it eventually becomes a LOWchair.

While Jennifer and I can take some solace in the fact that his first round of chemotherapy is nearing its end, it is still only just the beginning. Once Declan finished his 2nd round - that's when imaging will take place. We'll actually get a chance to see how his neuroblastoma is responding to the treatment, and if we need to change course. 

All this uncertainty, toppled with the financial insecurities we are now facing. 

Everyone has been extremely helpful with food and meals. It has certainly helped us in not needing to worry about what to make for dinner for the foreseeable future. Only now the looming threat of medical bills are starting to arrive.

I wish we didn't have such a burden of healthcare as we do. Even with insurance coverage, we are still looking at thousands and thousands in hospital stays and treatment costs. That - and the loss of wages we'll be seeing due to needing to take care of our precious little boy.

Nobody should need be forced to make a choice between the health and wellbeing of their children, or suffer from a grueling alternative just to keep a job or a roof over your family's head. 

While attempting multiple times to find a more stable line of work, I've been met with nothing but FOAD letters. A line of work that would also provide some flexibility as my family's health concerns will always come first.

I know this blog is a good way to keep everyone informed about Declan's status and updates from his medical procedures, but it is also an opportunity to point out some real struggles that we're dealing with. Not just with the uncertainty that Declan's cancer gives us, but also the financial uncertainties that lead us to make some very difficult decisions. 

Health scares and unforeseen circumstances (like the sudden discovery of a tumor in a 6 month old) shouldn't threaten any family with losing everything.

Yet here we are.

We love and appreciate any means and ways people are offering to assist us. Honestly. Even if it's dropping off groceries, a gas card so we can travel to and from Children's Hospital for appointments, or donating to the GoFundMe that Jennifer's sister Andria was so gracious to organize for us, every little bit helps to ease the financial burden we are currently facing.

We love and cherish you all who have been with us this whole time.

I will continue to post weekly blog updates on Declan's journey so everyone can know how he is doing, and see his wonderful smiling face from time to time.