This afternoon when Heather was driving here to bring our belongings and lunch, she spilled about 1/4 of a large “sodie pop” (as Hudson calls it) in my car. I can’t even be mad, she was bringing it to me! Then later this afternoon, Heather ran over Hudson’s fingers with the IV pole. I’ve never seen his face so red and have so much steam coming from his nose and ears (maybe a growl too) - but he regulated by ignoring us for a bit and didn’t even cry! Later, as Bodhi was pulling us around by his IV pole, we took our eyes off of him for one second and when we turned back he was pouring apple juice into my shoe! But besides that, we’ve been doing okay. 

Now for the adventures. Bodhi and I arrived at Sanford around 6:45am. We brought ourselves and my work bag in case I had time to work while he rested. He was checked in and we got to our room a little later. He seemed to know everyone welcoming him back but appeared to be a little shy in engaging. Was he being shy or was he tired from being up so early? Around 9am he had a scheduled lumbar puncture chemo. This is the chemo that goes through his spinal cord and brain. It requires sedation. I’ve been with Bodhi for every procedure (except one - his catheter) and I don’t care how many times I do this, I struggle to keep eye contact with Bodhi as he falls asleep under anesthesia. Nothing out of the ordinary happens but it saddens me so much to see the bubbly boy I bring into the room turn into a weak and grumbly boy who’s eyes roll around in his head until he sleeps. I’ll never let him be alone but I’ll always sigh as I exit the treatment room. 

When he returned from the procedure he was even more wiggly. He was alligator rolling and attempting to hit me although he clearly had no idea what was going on. This is the second hardest part of the procedure. The same bubbly boy I brought into the hospital at 6:45am is now out of sorts. He probably doesn’t know up from down (do toddlers usually know this 🤪) but he struggles so much with finding comfort in sitting, laying, standing, playing, etc. Nothing seems to satisfy him and it always feels unfair. I told staff today I feel like I’m on Punk’d. Is Bodhi really sick? Because I seem to make him sick every time I bring him to the doctors for more procedures but he’s fine otherwise. We laugh because we know that things could be worse. We caught his cancer quickly so it didn’t show significant symptoms but it could have - and that would be worse.  

He decided to play instead of rest so he and I went to the mat in his room to look at toys Child Life brought us. He was insistent on doing anything but relaxing but shortly after getting on the floor he was up on hands and knees vomiting. I picked him up to console him and he vomited more. We both needed a change of clothes and he needed to rest. Our nurse assistant and nurse saved the day by cleaning our mess and because Heather was going to bring our items later today, I had to call and ask her to come as soon as possible. She came as soon as she could but before she got here I snuggled with Bodhi in the rocking chair and he was soon asleep (as you’ll see in the pic). We were cozy, messy clothes and all. You may even notice he has an emotional support sound machine. 😄 He really likes turning it off and on and tonight he needed to take it to bed with him. 

Bodhi slept for a long time while I changed and unpacked our totes. Heather watched him while I worked and in the meantime chemo started. This chemo is unique to us - meaning we’ve never had it before (or yet). They gave Bodhi an IV with something in it to make his body more “basic”. When his urine was at a specific Ph level, he was allowed to start. The chemo will make his body very “acidic” so they monitor every diaper and test his urine for their Ph level. The bag of chemo is pictured too. It’s gigantic and it’s an icky yellow color. It will run for 24 hours and he may have an IV even longer as they want to flush it out of his system ASAP. This chemo is hard on kidneys and we don’t want that for Bodhi. 

Speaking of what we don’t want… we met with the dietician who discussed Bodhi’s tube feeds. He continues to eat minimal to nothing but will drink well. She was supportive and is planning some options for us to follow while he’s here. However, it was mentioned in rounds that we don’t want Bodhi to start having an oral aversion. Like it’s possible he may associate food with being yucky or making him nauseous so he just wont eat anymore - even when he feels good. That’s what we don’t want. Speech therapy has been following and will always be there as we need but we hope Bodhi likes food as much as I do when this is all said and done. 

The rest of the day was uneventful but full of emotion. I arrived to the hospital with energy and excitement to get back on track but by the time the afternoon rolled around - I was blue again. Cancer isn’t fair. I can’t speak for anyone or any other type of cancer other than Bodhi’s but we can’t prevent it from coming back. We don’t even know why he got it other than he had bad luck. We don’t even know what kind of bad luck - because it’s random and rare and plain unfair. In December I was a wreck. I had big, ugly, messy tears quite often but as time has gone on, I’ve had to normalize things that aren’t normal. I’ve become desensitized to things that should still be sensitive. The first time Bodhi got a feeding tube I cried about how plastic-y he smelled. Now he pulls it out on his own and Heather and I remove it like champs. The first time Bodhi needed to be sedated, I held him until he fell asleep and cried all the way back to the room. Now I bring him in, make sure he knows I’m there, hold him tight, avoid eye contact but not too much in case he needs me, lay him down when he’s sleeping, and walk back to the room with a little sigh. As I lay here tonight, I untangle Bodhi from his chemo IV and his feeding tube. His machine beeps. I rearrange him, but it beeps again. Some tube, somewhere is occluded. Last night, I didn’t dare sleep

until after midnight because Bodhi needed an overnight feed but it had to be stopped at midnight so he was NPO for his procedure today. I was afraid I would sleep through my alarm and miss disconnecting him and make him miss his back chemo today. But this has become our life. We do this not because we are strong but because we have to. 

We have to for Bodhi and Hudson. In fact, I wonder how many I Love Yous, or hugs, or high-fives, or etc are required to get a 1 year old and 3 year old to understand that you adore them, that you would do anything for them? These two boys are so tough! Bodhi does the physical work and Hudson does the mental work by processing what’s going on. In fact, on the way home (to the hospital) from daycare today, I told Hudson we were going there to see Bodhi. I said he needed more medicine and didn’t feel good today. Hudson responded by saying, “Bodhi has angry cells. Do you know why Bodhi has angry cells?” Ugh! My heart! I attempted to give a lame response on how it was just bad luck but I know he will be curious again. I hope our boys know that they mean the world to us - they’ve done incredible things the last few months and it’s hard to express to them our gratitude for being such good boys. 

To end on a happier note - I do believe God puts in our paths those we need to meet. I mentioned above that I was bummed today. But as I was sharing with Heather my feelings, someone knocked on our door and delivered a gift from our anonymous prayer warrior! What are the odds? There were so many wonderful gifts for the boys and us and so many kind words shared. This person is anonymous to us and we will respect that but I hope they know we would love to consider them a friend and be able to thank them somehow. But needless to say happy tears flowed for the gratitude we own this individual. Their thoughtful gifts are priceless. 

But to top that off, I went to pick Hudson up from daycare and a young boy ran out of a random classroom. I don’t know him or his parents but he was wearing a Bodhi Buddies shirt! I was able to catch his dad and say thank you but how wonderful is that family for wanting to support us even thought we’re strangers? It was really a neat sight to see that shirt pop out of nowhere. 

And finally, Hudson and his teachers went above and beyond when creating Mother’s Day gifts. There were some beautiful things given to us by some beautiful people and we cannot tell them enough how much we love and appreciate them. 

Our love and appreciation is also for you folks reading this and cheering us on. Thank you for believing Bodhi has a journey worth enough to follow. And I can’t forget the wonderful staff here who made our difficult day a little easier by being true angels. 

Good night and take care. 

We will send another update soon!