cycle 3

Monday, April 4th, we came to the hospital for Hiro's 3rd round of chemo. His treatment is every 2 weeks and each time we come we know we will be admitted for a minimum of one night for them to monitor him.

Since we live less than 5 minutes from the hospital we are allowed to go home in between cycles. We typically are back 1+ times a week for blood work or other tests he might have but overall we can live at home.

It is a bittersweet, on one hand it is nice to be in our own space and have a sense of normalcy. On the other, we love our nurses and doctors and it can be tough trying to keep up with all the extra steps that come with having an ill baby.

It can also be difficult trying to figure out what him being an almost 6 month old baby is and what is a symptom of him being sick. I think Jon and I live in a constant state of anxiety with it all.

So far, his 2nd cycle has been the only one where we were able to go home the next day.

(You can learn more about his first round of chemo here: https://www.hiroendures.com/post/manage-your-blog-from-your-live-site)

For this 3rd cycle, it took a few rounds of fluids before he was at the proper range of hydration before starting chemo. The technical term for what they check is his specific gravity. They have to make sure his specific gravity is in a certain place so they know that his kidneys will be able to pump the chemo out of his body.

After he reaches the correct specific gravity they begin to give him the pre-meds. After the pre-meds they can begin his cisplatin (the chemo med he takes). It is a 6 hour infusion.

We began chemo around 6:30pm Monday evening.

He had a decently tough night but nothing too terrible.

But then came Tuesday morning...

I took this video around 6am...

And this video was about an hour later at 7am...

You can see the drastic shift in him. Even when he is feeling so miserable he tries to still play and wants to be happy.

It is crazy how quickly things can change with his little body.

By 7am he had a fever (which automatically means we will stay a minimum of 24 more hours), he developed a rash, there was a little bit of blood in one of his projectile vomits, his breathing was increased/shallow and he was just not himself at all.

They took blood cultures and also started him on antibiotics to help him. His fever went away as the day progressed but he was still vomiting and not feeling well.

Wednesday came and his rash was almost completely gone and he still was not running a fever. Unfortunately he was lethargic and also inconsolable. When he was awake he was screaming and fussy and if he wasn't doing that he was sleeping. Poor buddy needed rest since he barely napped or slept since being there. He was still throwing up and began to have a runny nose.

One of the doctors came in and after assessing how he was doing compared to the day before he acknowledged that he was doing better but that staying another night would be good to monitor him more.

It is terrible to see him feel so miserable.

And unfortunately for me, I woke up Wednesday not feeling well. I have POTS (postural orthostatic tachycardia syndrome) and that plus my other health issues can leave me never knowing how I will feel daily. Some days I wake up feeling fine and other days I can barely function. When I woke up I knew it was going to be rough.

I did end up fainting in our room (a common occurrence with my symptoms) and like I usually do I came to a few minutes after. I was ok as Jon and our nurses helped ensure my safety. The rest of the day I was very weak.

I cannot describe what it is like to have days where your body can barely take care of itself let alone your child. But it is so much worse when you see your helpless sick child laying in a hospital crib and you know you cannot do anything for him. Struggling to have the strength to hold him.

I am beyond grateful for Jon. Thankfully his wonderful job is allowing him to work remote...so he does - in the hospital - with his struggling wife and sick child. He has always been so gracious, caring and kind through of my health issues so I am not surprised at how amazing he has been with Hiro.

But Jon and I are only two people who have barely processed anything that has happened so quickly. We are so thankful for our family and friends and all the support we have received.

When we are in the hospital, outpatient or admitted, we are beyond loved/cared for. If nurses in the unit see his name they go out of their way to come say hi to him. They do not see us as just their job, they genuinely care.

The nurses and doctors in the pediatric oncology unit...they are special people. What they see everyday and how they kindly sit with us families as we are dealing with intense situations is not an easy task. Not just anyone can do what they do. We know that our situations weigh on them too. But their dedication to these kids is so touching.

Personally...many of them have sat with me as I have cried, they hug me when I am down, they graciously answer my endless questions, they listen to our every concern...gosh there are endless things I could rave about them all.

We know they are people too. In fact getting to learn about them is something I look forward to every time we are there. (I can be very socially awkward but they are so nice regardless.) Jon, Hiro and I truly care about them. And watching them love on your sick baby fills our hearts.

So if any of our nurses or medical staff read this by chance...just know you are a huge blessing to us and so many. We love you and Hiro loves you all so very much. We could truly never thank you enough. <3

We were able to go home Thursday (April 7th) in the afternoon. The past couple of days at home have been pretty good. Hiro has been happy and has slowly felt more like himself which is always a refreshing sight. We are exhausted from a long week but we are going to keep doing everything we can for our sweet boy.

Thank you to everyone reading this. Your love and support means the world to us as we are going through the worst time of our lives.

3 down...3 to go.

All our love,

Heather Frost