Mess Ups and Road to Recovery

9/5/2011:  11:00 AM

My computer is having issues.  The battery has been practically shot for awhile, so I have been relying on the power cord.  Well, the power cord no longer works.  I ordered new, and it will be a few days until the parts are in. I have been stalling in an effort to avoid using Kyle's computer, because the keyboard is way too flat and my fingers are way too fat to hit these tiny keys, but here goes. Apologies for the typos in advance.

Sunday through Wednesday were rough. Hands down, the worst we have had since we left Children's weeks ago.  But then the sun arose on Thursday as did Davis.  He even begged to go to school.  We arrived late, but still made it. He felt sick all the way there.  At one point, he yelled from the back seat, "Mom, floor it!" In a panic, I glanced in my rear view mirror, "Are you gonna puke?"  His eyes were closed and he was cupping his hand around his forehead. He said, "No, but I am going to miss the read-aloud."  That brought a smile to my face. And yes, he missed the read-aloud.

radiation machine

He managed to enjoy a couple of hours of school before we had to head down to St. Louis for radiation.  The actual time his brain is radiated is three minutes, and the whole process (getting positioned, placing the mask, etc) takes about ten. I was able to watch him the entire time on TV monitors. Pretty uneventful. Davis describes radiation as three bright flashes and a swoosh of metallic smelling air that shoots up his nose.  The techs say that it what most people experience. 



only 8 bites of this beautiful salad



Thursday night, Davis enjoyed eight bites of a bland salad. We met the director of the food service at the hotel that we stay at in St. Louis. His twin brother was diagnosed with AML (the other type of Leukemia) thirteen years ago, and he was the bone marrow donor for him.  We enjoyed some nice dinner conversation with him.  Later on that evening, Davis and I played in the pool for awhile, as we had it all to ourselves. I was worn out and slept well.

On Friday, I had a series of mess ups. Kyle and I make a pretty good team.  There are certain things that he usually takes care of, but when he is not there, I am in charge. Davis woke up on Friday with nausea. In an effort to keep the Neurontin, a side effect med, down, I gave him three baby goldfish. We then went about our day. He had chemo, and then we headed down to the APC (Ambulatory Procedure Center) for Davis's spinal tap. Because of those three little baby goldfish, we had to postpone the spinal tap until 3:00 PM, which meant Davis had to go even longer with no food and drink.  A recipe for disaster.  Needless to say, we had a ton of time to kill. 



looks uncomfortable to me

Davis developed a headache (probably from not eating) around 11:20 AM and slept in a wheelchair for a good hour. He was already a grouch, so the sleep was a blessing. His radiation was rescheduled from 4:45 PM to 1:00 PM.  As we waited to get into radiation, a putrid garlic smell began to permeate the waiting room.  Davis suffers from extreme sensitivity to smells; certain and most smells make him instantly sick.  We had to wait in the hallway by the elevators, and Davis grew even more agitated. Finally, he was worked in for radiation. 

he's under there somewhere

We headed back to the APC for the spinal tap. They whisked him back right away, and he was awake much earlier than anticipated. He was awake ten minutes after the procedure. He had to lie flat for one hour and receive a bolus of fluids. As the hour progressed so did Davis's nausea, and as his health worsened, so did his attitude. He was intolerable. He refused to eat or drink and begged to stay at the hospital. The oncologist came down from 9th floor to check him out as well. It was very much the consensus that Davis is suffering from some anxiety. In order to get him out of the APC, it was recommended that I give him some of his oxycodone. (You have to bring ALL of the meds with you every time.) This is where my next mess up came into play. I had left the medicine - all of the medicine - in the car. It was all ruined. Apparently, as I have learned, medicine can't withstand temperatures greater than 75 degrees.  And if you remember, it was 100 degrees on Friday. I had to wait on a refill for oxycodone at the hospital because pharmacies can't fill pediatric prescriptions for narcotics. We were finally on the road around 6:00 PM - 4 1/2 hours behind schedule.

Davis improves a bit every day. He is still plagued with mild headaches and nausea, but no fevers. The doctors are still puzzled as to the cause of last weeks symptoms and introduced yet another new possible idea.  Hypoglycemia (low blood sugar). Between the chemotherapy drugs and Davis's non-existent appetite, his blood sugar is low, especially in the morning. He tells the doctors that he has a bad headache in the morning, and then he eats a Casey's Gas Station donut before school, and he feels much better. We all would laugh it off, and tell him that if he thinks donuts are good medicine, he can keep eating them. But Dr. Bednarski concluded on Friday that if Davis's blood sugar is low, he would have morning headaches, and donuts (food high in sugar) would relieve them. So now, we are watching for symptoms of hypoglycemia in addition to other side effects.

The radiation has claimed even more of his hair, but I am still amazed that he is not bald yet.  He still refuses to shave his head. He is stubborn and is content with loosing it one piece at a time. His radiation will end on Thursday, and on Friday, he begins a new 29 day round of chemo if his numbers (platelets and ANC) are high enough.

We continue to receive such fantastic encouragement and support from so many people. It is such a comfort to know that we have not been forgotten.  We can't thank you enough. We are touched that Davis's fight has been far reaching. Davis has a gentleman, whom he has never met, who lives in Arizona and travels about. Mr. Spear sends him postcards of places he visits. Davis loves geography and has enjoyed the postcards. Davis continues to read the cards the come his way too - his fan mail. :) 

We know how blessed we are. We are pretty fortunate that Davis experienced his first illness seven weeks into treatment.  Many children are sick from the first day of treatment.  It was also a blessing to know that Davis's immune system responded quickly and well to whatever it was that Davis had. The oncologist reassured me that this won't happen every time, but it was encouraging to know that at least at that point, Davis had a healthy immune system.  We pray for Davis's health and the health of those he is around all of the time. We know that this week could have been far worse looking back on it. Experiencing it . . .living it, it was sure horrible, though.

 Davis no longer eats, so we pray that his appetite kicks in. He has already lost three pounds and is twenty or more pounds lighter than many of the fifth graders he goes to school with. He will eat a couple of bites of something and be done, and he is very particular with what he eats. Lately, all he has craved is lettuce. The nurses and others encourage us to give him protein and fat rich items: peanut butter, steak, eggs, yogurt . . . all things he wouldn't touch before cancer, and all things he won't even think about now. I take that back; he will eat the white part of a boiled egg. That's it.

That is one of the hardest parts of this journey. Davis is ten. He isn't ruled by reason; he is ruled by emotion. We, as adults, know the importance of eating even when we don't feel like it, but ten-year-olds don't eat if they are not hungry. We, as adults, can comprehend the long term importance of taking medications at scheduled times, but ten-year-olds who don't feel well are ok with taking a day off from medication.  And so the battle continues. I guess that the flip side is that Davis is ten. He is allowed to have his opinion, but at the end of the day, we get our way, so he continues to chug down the medications and nibble bites here and there.

We continue to pray for no sickness, no short or long term side effects, healthy kids and teachers at school, and peace. We continue to pray for Annakate's health and well-being as well as the children in her classroom.  Most importantly, we continue to fervently pray for continued remission and CURE.  We give God the praise because that is where it is due. We want to be the one leper of the ten that came back to thank Jesus for the healing as found in Luke 17, because it is our faith that brings the healing.

¹² Then as He entered a certain village, there met Him ten men who were lepers, who stood afar off. ¹³ And they lifted up their voices and said, “Jesus, Master, have mercy on us!”
¹⁴ So when He saw them, He said to them, “Go, show yourselves to the priests.” And so it was that as they went, they were cleansed.
¹⁵ And one of them, when he saw that he was healed, returned, and with a loud voice glorified God, ¹⁶ and fell down on his face at His feet, giving Him thanks. And he was a Samaritan.
¹⁷ So Jesus answered and said, “Were there not ten cleansed? But where are the nine? ¹⁸ Were there not any found who returned to give glory to God except this foreigner?” ¹⁹ And He said to him, “Arise, go your way. Your faith has made you well.”

Thank you again for the positive thoughts, prayers, care and concern you keep sending our way. We love and appreciate them.  We couldn't do this without your support.

And as always, we will keep you posted.