Fluids on the Go

2/4/2012: 10:18 AM

Davis is rocking his own CBC so it
doesn't clot.

After school on Wednesday, I took Davis over to get counts. We are used to the routine. The process - one tube for a CBC (complete blood count) and two small tubes for a CMP (complete metabolic panel) took nearly an hour because Davis' blood clots very easily. The tech has to keep poking different fingers to get a good draw. Davis isn't bothered by the pokes and is pretty patient, so it is no big deal.

We received the counts Wednesday evening, and chemo was on for Friday. Davis' counts had jumped considerably from the previous week. His ANC was in the hundreds the week before making him neutropenic, and this week it was at 1224! Not the healthy 1500 and over we like to see, but a great recovery from the 213 from last week. Actually, all of his numbers trended up except his hemoglobin.

Beginning of fluids

Friday started pretty early. Kyle woke Davis up at 4:45 AM to eat a bowl of cereal. Davis couldn't have any food after 5:00 AM due to the lumbar puncture he would receive at noon. We were pulling out of the driveway at 5:20 AM. A quick trip to my in-laws to drop off Annakate and we were on our way to Children's. Poor Kyle. No company. Davis and I slept the entire way down to St. Louis. We were ushered into a room at 8:20 AM where Davis met with his doctor. He was accessed and a blood draw was sent off to determine if his hemoglobin had dropped below 8. Davis was immediately started on fluids (a saline, sugary mix). He was to receive a chemotherapy called Cytoxin. Cytoxin can do damage to the kidneys and bladder if the body isn't properly hydrated. Therefore, Davis is pumped full of fluids, his urine output it monitored and tested to see how concentrated it is, and when the urine reaches a certain dilution, the chemo (a 30 minute bag) is administered.

Midmorning, we found out that Davis' hemoglobin had dropped and he would need a transfusion. The rest of the morning was a bunch of waiting. My in-laws, Gary and Marylee, popped in, and kept us company. Davis' mood improved considerably.

At 11:00 AM, we headed to the APC (Ambulatory Procedure Center) for Davis' spinal. His appointment was at noon, but the child scheduled two ahead of him had some major complications, so Davis didn't actually go back for his procedure until 1:10 PM. The waiting added to the length of our day. We were back up on ninth floor at 2:00 PM.

Waiting on Davis to wake from anesthesia after spinal. The nurse
tried cushioning his leg with an egg crate. Davis experiences right leg
pain after a spinal. We were hoping this would help. It didn't. It
is now assumed that there is a nerve near when he is accessed for
the spinal.

A little after 2:00 PM, Davis' urine tested at the hydrated level, and Cytoxin was administered. He hates this. The chemo makes his nose sting, and there is nothing that can be done. He held his nose to a blanket and cried for thirty minutes straight. After the Cytoxin, Davis received the Ara-C (four day chemo) on a pump over ten minutes. The unit of blood Davis was to receive was then started. Blood takes forever to transfuse. When Davis was all finished and his fluid pump was hooked up, it was 5:45 PM. Davis was the first patient there in the morning and the very last to leave. We pulled in the driveway at 8:45 PM. A very long day indeed.

Blood transfusion.

Because the Cytoxin is so very potent, Davis was put on a 4-hour fluid pump for the evening. It was quite interesting. He was basically on an IV drip via his port. He was given a little travel bag for his bag of fluids and the pump.

Davis will have Ara-C (four days of chemo) this weekend and next. Kyle will administer the chemo every day and de-access his port on Monday. Davis started a new oral chemo. He will have to take it for the next two weeks. Davis hates it; he says it tastes disgusting. But since he is still not able to take pills, he is stuck drinking this bitter liquid.

If all goes well and Davis is not hospitalized for any illness over the next couple of weeks, Davis will be done with this roadmap (treatment plan) on February 24. We will then officially be in the 2 1/2 year Maintenance Phase and chemo treatments are expected to decrease to once or twice a month.

We are happy to have our very long day behind us, and we are blessed to have a son who is doing so well despite the circumstances. We thank you for your thoughts and prayers and encouragement, because it is a constant reminder that even though the journey is long, we are not braving it alone. I am pretty sure now that a family can't survive cancer and not be completely and permanently changed by the experience. The mundane is washed away and perspective is altered. I am thankful for that.

We will keep you posted.

We killed some time with the timer on my camera. What started out
as a picture of Davis and Mom turned into 45 minutes
of hysterical picture taking.