Let's see. Where were we? We got up at 4:30 AM on Friday to make all of our appointments. Davis was super tough. He had his spinal before chemo this time. He received a bag of fluids before the spinal and after the spinal to reduce the potential for migraines. He was given his chemo, one of which is called Cytoxin. I am not a fan of putting anything into the body that has "toxin" in the name. Needless to say, this chemo is pretty powerful and requires Davis to be on fluids for four hours. His system has to be flushed or complications in the bladder can occur. We were the first people in clinic on Friday and the last people to leave.
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| chemo isn't fun, but I suspect he's milking it a little here |
In addition to the Cytoxin, Davis had other chemo as well. One in particular, Ara-C, causes nausea. Davis started a new nausea medication, (He had adverse reactions to the one we have been using for the last couple of months.) and we hoped that it would work. Plus, Davis has never experienced the nausea as a side effect with the Ara-C. Well, we made it to Collinsville when Davis became sick. I think between the new nausea medication, the chemo, and five o-clock traffic, sickness got the better of him. The oncologist told us to turn around and bring him back for admittance. Her concern was dehydration after the Cytoxin. After fighting traffic back into St. Louis and hanging out in an isolation room in the ER for two hours, we were finally in a room at 9 PM on the 9th floor. There was a balloon fair going on at Forrest Park, and we were able to watch the fireworks. That was a nice bonus for such a long and miserable day.
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| the garden view |
The night didn't end there. By the time Davis got his medications and we finished our normal pleading and fighting to take the medicine routine, it was midnight. I don't remember being that tired in a long time. I think I fell asleep before Davis did.
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| 70 balloons go up during this festival |
We spent most of Saturday watching the hot air balloons out our window and watching cartoons. Hydration makes Davis feel so much better. He managed to eat some food and drink quite a bit throughout the day too. At one point, he even felt well enough to head down to the garden to catch a better view of the happenings at the park. That was short lived because his energy is so fleeting.
The nurse helped with medications on Saturday morning. He did so well for her. She definitely had a no nonsense approach. Funny how he responds to her no nonsense approach much differently than he does to my no nonsense approach. I joke about it now, but I was ready to kidnap her and bring her to Ashmore.
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| finally made it to school at 1:30 PM on monday. better late than never. |
We were released Saturday evening. Davis slept the entire way home. The weekend was devoted to chemo (the 4-day chemo I administer through his port at home) and rest. His appetite is still very poor, and I wasn't at all surprised when he weighed 59 pounds on Friday. 59 pounds! The doctors are pulling out a few more tricks before a feeding tube is considered. We continue to cater to his every food wish in the hopes he will eat enough to sustain his little body. I have noticed that he has been eating a bit more the last couple of days. Not much more, but it is something. Another answer to prayer.
The medicine time continues to be a huge source of tension in the Coffey home. Davis's growing anxiety and his stubbornness make the seemingly simplest of tasks extremely difficult. Last night, I started his medication at 6:20 PM, and he took the last of it at 9:30 PM (5 medications, most of which were 1.5 ml or under). It is not uncommon (like last night) for Davis to become sick (polite for vomit) while taking his meds (a combination of nausea and anxiety), and then the medication has to be repeated, which leads to more anxiety.
Today he made it to school. Yay! He didn't feel well, but he made it.
I can see how this journey wears on people. My heart breaks for Davis. I hate it that he has to go through this; I hate that he overthinks everything and has fears that hold him down. I admit that there are brief moments when I get into a funk and feel sorry for myself. I long for the lives we had before cancer. And just as Morrie Schwartz did in the novel, Tuesdays with Morrie, I indulge in my self-pity for a few minutes - maybe cry or throw something - and then I start counting my blessings. I think about people who survived concentration camps and their stories or the 8-month-old with brain cancer I saw in the chemo lounge or the child down the hospital hall from us on Friday who is awaiting a diagnosis. And I pray. It seems that God and the continued support we receive from all of you keep our spirits lifted enough to fight all the obstacles in front of us.
Our most immediate prayer requests are for Davis to take ALL of his medications and EAT. The medication will keep the cancer in remission and control the side effects, and the food will provide the nourishment he needs to keep his body running properly. We pray against all side effects, especially the long term ones (secondary cancers, liver, heart, and kidney damage, etc). We pray for healthy kids at school. We wish for Davis to go to school as long as possible, because it is the one place where he can escape the reality of cancer treatment. In order to do that, kids have to stay healthy. Most importantly, we keep our eyes on the goal. We pray for forever remission and the CURE.
Again, we thank you for your support, positive thoughts, and prayers. I can't fathom our family braving this alone.
We will keep you posted.
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