5....4....

Eli’s spring break was not really a break at all and I kept wondering why people were asking if we did anything fun. We got out of the hospital on Tuesday, the weather was not ideal and he had to go back on Friday for Week 4 of Cycle 4. We skipped PT because Eli's mind and body needed the rest. He resumed school with two different online classes - math and English and finished the first quarter with As in science and history.

He made counts on Friday and his mucositis was all cleared up, so he was admitted and treatment began. Rinse & Repeat. There was conversation about how nice it would be to have another week off, but that would delay the treatment that he has to do anyway and the consensus was that we hoped we would make counts. We've mapped out the schedule and staying on track would mean that he is off for his birthday, prom and Bella's graduation. The stay wasn’t awful though and actually passed quickly. He had a great appetite, nausea was under control and he cleared first thing Tuesday morning and felt great all week. He even went for some hospital strolls and made it to his baseball game Tuesday night, hung out with Riley a couple times and enjoyed his freedom.

We like to walk down the hall and sit for a change of scenery and to get out of the room.

Eli's secret to clearing this time was lots of In N Out Double Doubles. I don't want to admit how many he put away.

PT today included getting in the pool for the first time and walking unassisted, which I could tell was such an awesome feeling. He’s lived with so much assistance these past few months so to be untethered, unsupported, and free was such a joyful experience.

PT consisted of walking and doing some resistance for about 50 minutes. This was the highlight of his week and the one appointment he doesn't dread. 

And breakfast afterward at the Griddle.

And getting the windows tinted on his car.

Nobody wanted to go back on Friday. It’s become one of those things we don’t discuss when we are between admissions. We all know it’s coming, but we just try to enjoy the days in between in blissful ignorance of what’s around the corner. We had an early morning appointment at clinic where Eli wasn’t in the mood for eye contact or pretending to be in good mood.

We had some time before the room was ready so we got some food until we got the green light to head upstairs. We were in the same room as last week. The days start to run together inside these walls. All day Saturday, I thought it was Sunday. A normal person wills time to pass slower on the weekends, wishing for more time for leisure activities before Monday rushes in with its demands and structure. Here we sit, wondering how we can spin the hands around the clock faster, speeding toward Tuesday. This weekend will finish out Cycle 4 of treatment, with only TWO cycles remaining and FOUR hospital stays left. 

Week 1 of the next two cycles will be out-patient only at the clinic and he will have a 24 day break from the hospital. I am no longer viewing this as a Light at the End of the Tunnel situation. The tunnel still feels mostly dark. But I do think that this marathon has a finish line. I can't see it, but I know that it is up ahead, around the bend. At this point, it's a mental battle of just putting one exhausted foot in front of the other, as our bodies physically carry us the rest of the length of this race and our minds stay strong to get us to the end. 

His appetite has remained strong the last couple of admissions and he's been awake for most of the second part of the day. He's passed the time with watching March Madness and Dodger Baseball. He's been clearing pretty quickly and Monday afternoon was at .11, but the doctor wouldn't let us redraw later, which they've done before. First thing Tuesday morning, he was at .08, but we still had to wait to see the doctor before discharging, although Eli was very close to de-accessing himself. 

And....we took our freedom ride. Eli seriously breathes the BIGGEST sigh of relief when we get home. 

I love this boy that calls me mom. I will love him forever and like him for always. 

Cycle 4 Weeks 1-2 + PT + ER Visit

In like a lion…

We started March feeling okay-ish - couple of queasy days even though we threw everything at the nausea but appetite was good. Eli went to a couple of baseball practices and we had some sunshine days of good weather.

Eli had a clinic appointment on Thursday 3/6 to check counts and his neutrophils had already dipped to .96 (960) which is moderate neutropenia. We always expect them to drop after the Doxorubicin but I really wasn’t thinking that they would drop so much in such a short period of time. Normally we see them drop this low between days 10 to 14. So he went to his first physical therapy appointment and he did a little bit of cardio, some resistance bands, and some weightlifting on the weight bench. He was really excited and looking forward to this appointment.

I let him drive home.

Once his counts go back up and his incision is fully healed, he will be cleared to get into the heated pool and at that point he can do some resistance and some walking in the water without bearing any weight on his leg and I think that this will be really good for him physically and mentally.

Bella started feeling sick that Saturday and she isolated herself to the upstairs and was recovered and back to school by Tuesday. But on Monday Eli told me that his mouth was starting to hurt (mucositis) and he couldn’t eat his breakfast. He pretty much survived on protein shakes and ice cream for a couple days and I called clinic and let them know that he was having a rough go and they told me to call back and make an appointment if he was unable to stay hydrated or drink anything, but he was not having those types of issues other than just not really being able to eat anything solid so we stepped up our magic mouthwash rinse, and salt and soda rinse and some Helios solution and made sure we were brushing really well. There weren’t any visible mouth sores, but he was uncomfortable and it hurt even to talk.

He really wanted to go the first baseball game of the season on Wednesday 3/12 and I didn’t want him to go. It is hard to pick and choose what to sit out on and how much to participate. This battle is physical and mental and mentally he needed to be there, so he went and I came later. Wednesday was really tough. He wants to be out there, wants to move and play like he has his whole life, wants to contribute on the field and in the lineup, but he is forced to sit this one out. This curveball is taking longer to master and he’ll just keep hacking away.

Thursday we had another PT appointment and he did some cardio with the arm bike and some resistance and weights. His hemoglobin is low but he keeps on pushing and keeps on digging deep.

We went back to clinic on 3/14 and his counts had dropped even lower to .5 (500) neutrophils, which is severely neutropenic. He’s only been this low (.6) at one other point in early November. Although his mouth was feeling better, his throat was now feeling like the mucositis had migrated there and he could feel it when he swallowed. I gave him some pain meds Friday night, but by Saturday morning, he could hardly swallow and was very agitated and in pain so we went to the ER. He was admitted and put on some strong IV pain meds. Sunday morning he spiked a fever and he started IV antibiotics to be proactive in case he has an infection. They did a blood culture and it was negative after 24 hrs. His doctor feels this is just a neutropenic fever. His monocytes are increasing which is a good sign since they start rising before the bone marrow starts churning out more neutrophils. Then his body can kick into high gear and start healing. His immune system and bone marrow have been more suppressed this time around.

Watching the Dodgers play in Japan.

Sunday night his temp elevated again and he had a fever all night long so more labs were drawn Monday morning to do another culture and his neutrophils had decreased instead of increased so he got a shot to encourage production. His fever broke on its own and we dialed back the pain meds to keep him more awake but he still napped quite a bit. He’s able to breathe room air though and keep his O2 saturation level up. He was also hungry and ate some more Mac n Cheese and another milkshake and some jello.

Monday night he got a visit from Riley and another milkshake and some dinner, which is really the first full meal he has had in over a week. I think we are turning a corner and should hopefully be on the other side of this setback, We will see if he is good to continue treatments on Friday or if we delay for a week to allow his body to recover and be a little stronger. Eli stronger.