Tuesday, April 11, 2017

Eli was happy to have a finger prick
instead of access to his port last week.
We are at the clinic again this morning, but this time for red blood cells. Sigh. Really did not expect that to drop at this point, this long off chemo. In Leviticus, we are told that “the life of the flesh is in the blood,” so I am so glad to live during a time of medical knowledge and understanding. Give Blood!! Doesn’t cost you anything but time, but could help another gain time. Eli has not had an allergic reaction to red blood cells … yet. So, he is getting standard pre-medications, and being watched closely here in clinic. We also learned that, if he does need platelets again, Birmingham is not an option because they have stopped “washing.” Like most things, it’s kind of an opinion thing, and whoever is in charge now is of the opinion that it is not worth the effort. Just not enough kids that need it, I guess. Anyway, the goal of course is that he NOT need transfusions, and we knew going into this first cycle that Dr. Johnson was hitting him hard, really wanting to stun the cancer. So, we are kind of paying the price on the back-end. Dr. Johnson is going to cut the offending chemo from the duo, and just use one chemo this cycle (if it ever gets started), then add the other back in, in small doses to find the right combination to keep him from needing transfusions.

Otherwise, he has been doing very well. As usual, even as attentive as I think I am, I had no clue that he was going to need anything. It had dropped slightly last Wednesday, but nothing big. He has been as active as he usually is. He went to two car shows on Saturday, walking around, and participated in youth night at church, speaking for 10 minutes. He’s not a ball of energy anyway, so some laying around for him is normal. So, it’s just so hard to tell with him. He did have some small bruises pop up when his platelets were low a couple of weeks ago, but that is the only time I’ve ever seen any kind of “symptom.”

So, here we are. His other numbers are slowing improving, but he is obviously not ready to start chemo. He has been off chemo so long, his hair is even starting to come back in. Only those of us who live in this “rare” world (the National Cancer Institute says
Eli and Joe
 childhood cancer is “rare”.) of terminal pediatric cancer can understand the torment of knowing that a monster is growing, while we watch helpless. It is like a tortuous shadow that follows behind you everywhere you go. You smile, converse, participate, go about normal everyday tasks while fighting to keep the shadow from swallowing you. The battle against blackness is tiring, so how comforting it is that I do not have to muster my own strength. “I can do all things through Him who gives me strength,” Philippians 4:13.

Since, Eli has not completed two of the new cycles, his MRI has been pushed back until the end of May (assuming he will have started and completed the second cycle by then). I’m sure you can imagine that this terrifies me. His last MRI showed progression, so I would really like to know what’s going on in that precious head. But, he was hit pretty hard, as I mentioned, with this new cycle, and historically, we have always been able to initially affect Eli’s cancer with a change in treatment. And, if he was still progressing, I really think we would notice something in some way by now. So, I’m trying to be patient, and let the doctor do the doctoring … this time.

We will be in Nashville at a Lads to Leaders convention this weekend, unless something comes up to keep us from it. So, we’ve got a big, few days of memories ahead of us. It’s one of my favorite activities that we do, and makes for a special Easter weekend every
Vic adding some new parts to the Mustang.
 year. Last year, Eli and I were in Augusta, and he did not get to go. Vic switched with me, for that weekend and stayed with him, so that I could go with the girls (Caleb stayed with Vic and Eli). So, we were split up last year. But, if nothing happens to derail us, we will all be there this weekend. It’s been our tradition that we go to the Rain Forest Cafe once while there, and the boys go to the Lego store, and the girls and I go to a shoe store. The Easter Bunny struggles to make things happen when we are out of pocket, but he usually throws something together in the nick of time. Eli is participating in speech, and was able to present his to the congregation during youth night last night. I have the video on youtube, and will share the text here so that you can follow along as he reads it (I think I may have gotten two of his cards flip-flopped, so you may lose him, but he picks back up).

The car shows are getting so close! Help us share about the shows. May 20th is the first one, in Athens, and then in Michigan June 3rd. We were so excited to meet our Michigan show coordinator, Joe Ferullo, who has been on fire getting this show established. He and his team have already raised thousands of dollars and they haven't even had the show yet! Joe and his son were vacationing in Tennessee last week, so they dipped down into Alabama, and we had a chance to meet them and visit for a bit. So, glad we did just in case we can’t make the June 3rd show. We intend to take the week prior to that show and have a real family vacation, and wrap it up with the car show.

Thank you for sticking with us, and keeping up with Eli. Your prayers are being answered in that Eli’s days are wonderful, meaningful, and packed with everything a little boy could want.

https://www.youtube.com/watch?v=v4hyZciiGuM

“Radical Ruth”

Thank you for this opportunity to speak with you, and share some thoughts from God’s Word.

Just after my 7th birthday in December 2011, I was diagnosed with a brain cancer called medulloblastoma. I’ve been treated in Memphis twice, and in Houston, and I am now being treated in Augusta, Georgia. Since I was diagnosed, I’ve had six brain surgeries, I’ve taken chemo for 35 months in five years, and had high-dose radiation to my brain and spine for a total of 11 weeks. I’ve been a part of testing new drugs, too.

When I got cancer, and even now, I don’t understand anything about why I got it, or what the doctors are doing to fight it. The doctors and my parents use words like palliative, Temozolomide, leptomeningeal, neutropenia, but I don’t really know what any of it means.

When I was in Memphis, and in Houston, the treatment was really hard. It made me very sick, every day, very sick. My mom or dad would give me the medicine, or help the nurse give me medicine and tell me that it would help me get better. That seemed so crazy, because all I knew was that it made me feel really bad. But, I trust my parents, and do what they ask because I know they love me, and wouldn’t ask me to do anything that wasn’t going to help me. I trust them, so I obey them. 

The Bible gives us important examples of people who held the trust of others. The book of Ruth is about one such person. She is sometimes called the female Job of the Bible. Her name is Naomi. She is a widow living in another country with her widowed daughter-in-law, Ruth.


Because of the deaths of their husbands, the two women are poor and are the lowest of all citizens. Ruth made a radical decision and gave up everything to follow Naomi back to Naomi’s country. Since they were poor, Ruth went to work in the fields of a rich man named Boaz. Ruth told Naomi how nice Boaz was to her. So, Naomi had an idea. For a woman like Ruth in that culture, during that time, to be married would lift her out of poverty. Naomi loved Ruth, and wanted her to be in a better place than in their world of hardship. 

Naomi told Ruth how to show Boaz that she would make a good wife. Ruth said in verse 5 of chapter 3, “All that you say, I will do.” Ruth trusted Naomi because of all that they had been through together. She knew Naomi loved her, and wanted the best of her, so she was willing to obey her. Neither Ruth, nor Naomi knew God’s plan for the generations that would be born of Ruth and Boaz.

Just like Ruth trusted Naomi because of Naomi’s love for her, I know to trust my parents because of their love for me. And just like Ruth trusted Naomi, and just like I trust my parents, we can all trust our Creator because of his love for us. We know he loves us because John 3 verse 16 says that God loved us so much, that he gave his only son to die so that we might live in heaven. 

We are all going to face some things that are hard, and wonder why bad things happen to us. And, we might be confused or wonder how God is using what he asks of us. But, we can’t see his plan for us. And we can’t see how he will use our hardships to do good, and help others get to heaven. But we can see His love for us by Jesus’ sacrifice. So, we can be confident in how God is guiding us. We can feel safe when we are following Him. We can be calmed by the peace of knowing that He loves us. And, we can be comforted knowing that He created a better place for us in Heaven.

That is the ultimate goal that God has for us, to get to Heaven. And it should be our ultimate goal for ourselves. It’s the perfect place. A home prepared by our Creator just for us, away from poverty, away from sadness, away from pain, and away from sickness.

I hope that you will make a radical decision to trust and obey God, like Ruth did of Naomi. Give up your doubt, give up your in-decision. Give up relationships and habits that are bad for you … empty yourself of what keeps you from trusting and obeying God. Make that radical move to do all that God says, and let’s meet in Heaven one day.

Thank you."



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