Ups and downs

Still hanging out in the hospital! Some good moments and some less fun moments today.  Jacob is still unable to stand without getting very dizzy. His blood pressure keeps dropping too low. Tonight when he stood it dropped to 77/50. We won’t be discharged until this gets better. He started throwing up today too, which may seem surprising since you just saw a picture of him chowing down on a spicy chicken burger brought in by some friends tonight.  Jacob is in isolation now too as we wait for stool sample results to come in because they think he may have a virus.  If he does, I will end upon isolation along with him!  Which means I’ll need someone to bring me coffee during the day 😁.

We got to see Jacobs port for the first time today.  I now call him my skinny little alien child. 😆 Some of you may be wondering why Jacob never has a shirt on. My sis in law felt bad for my skinny alien child so she whipped up some “chemo port friendly shirts”. Hopefully these will help him stay a bit warmer and comfier while keeping easy access to his port and all come the tubes coming out.

Despite this all, Jacob and I are having some fun here. We laugh so much and overall he’s feeling decent as long as he doesn’t stand up! We enjoy many visits from friends and family. We make our nurses try droppies and giggle uncontrollably as they try to not spit them out. We laugh at the blue Powerade vomit that forces nurses to change his bedding and that he’s quite the sissy for not handling his first chemo very well. We managed to sneak a keyboard into the room even though he is in isolation and we weren’t allowed.  We ring the nurse bell just to get them to take pictures of us.

Not all the moments are laughable though. Tonight Jacob talked about the big surgery coming up in September. The tumor has to be removed. It’s the first time he’s really talked about it and asked if his leg will be amputated.  The reality is, we don’t know the answer to that question yet and we may not know until just before the surgery happens. There are only a couple options. Leg salvage surgery, where half of his femur would be replaced with a titanium rod and a new knee as well and maybe part of his tibia. Or amputation.

Please continue to keep us in your prayers.  The chemo is beating the crap out of Jacob and there’s so much to go through yet. Pray his skinny little alien body can handle it all and that we can continue on with all the treatments. Pray that he can get out of bed soon so we can be home for a bit with the rest of our family before the next round.