“God rarely shows up early, but He’s never late.” I’ve said these words a thousand times to others who were going through difficult storms and waiting on God to move. What’s even more true than these words, is the fact that they are easier to say than to hear. But I found myself saying them to a friend in the halls of St. Jude late Wednesday when he asked me how I was going to move forward after hearing such bad news from this week’s scans. In that moment, I knew that God would show up before it was too late. I just couldn’t tell you when too late would be.
If you missed the last post, Bennett’s scans this week revealed that the cancer spread significantly in his lungs during the last six weeks he has been having chemo. The original tumor on his liver stayed the same, but the few spots in his lungs turned into more spots than they can count. Wednesday afternoon we sat down with our doctor where she gave us this report and began to talk about what our options are moving forward.
Our first option was to stop treating him, bring him home and put him on pediatric hospice. There are several children with this tumor who have survived a year or more on pediatric hospice and she wanted us to know that this is an option for us at any time.
The second option was a different chemotherapy drug combination known as I.C.E.. It’s a very strong chemotherapy treatment that has been used on rhabdoid tumors, but not normally on children as small or young as Bennett. It is VERY hard on the body. The other downside to it is that Bennett has already been on two of the three drugs in this treatment and they were not effective.
The third option was to wait for the clinical study of the new drug we have been talking about for months to begin. It is s anew drug that has shown some success in other children with rhabdoid tumors in their brain. When we talked together on Wednesday, our doctor still did not know when the clinical trial would begin but believed it was weeks away from being approved.
The last option was a different experimental drug that St Jude is doing a clinical study on right now. It is another drug engineered specifically for rhabdoid tumors. Our doctor had not spoken with us about it because they have no experience with this drug and since this disease inside Bennett is so advanced, she would rather be on a drug that has some kind of positive track record.
The other downside of both experimental drugs is that Bennett has to be off ALL treatment for THREE WEEKS before he can start taking them. The reason is that all chemo has to be out of his body when they begin the study. That way when they measure how the disease responds to the new treatment they can be sure that it was not caused by residual chemo in his body. All of us are concerned what will happen to Bennett with no treatment at all for three weeks.
These were the options we left her office with and agreed we would pray about them and let her know on Thursday of this past week what we decided. As we walked out devastated and knowing we had to hear from God, we also had three little kiddos who needed a snack! We headed to the cafe for some ice cream and that is where we ran into the friend who asked how the scans went.
A few minutes later I finished our conversation with those words I started this post with. “God is rarely early…but He’s never late.”
Hours later, the kids had been fed, bathed and put to bed. Megan and I turned everything off and began to pray and ask God what we needed to do. The answer came fairly easy and God put us on the same page quickly. Neither of us felt God calling us to stop treatment and neither of us felt comfortable with continuing chemotherapy. It’s just not working. So we prayed and told God that we would do whatever experimental drug He would get us on first. We began to get ready for bed and I decided I would email our doctor and let her know our decision. As I opened my email I saw that she had just emailed me. He message was to follow up and let us know that an hour after our meeting earlier that day, she got a call saying the clinical trial on the experimental drug we wanted passed a significant hurdle that day and that it might start sooner rather than later! Megan and I needed that! We went to bed a little more encouraged…praying and telling God we trust His timing and His healing…but still crying over our little man during the night. The next morning was full of activities and for a while we honestly forgot that we needed to follow up with our doctor. But by lunch time, she emailed us with yet another update.
The clinical trial was approved to start over night.
Yes…you read that right! The clinical trial that has been pushed back for months…opened up over night! God is rarely early…but He’s never late!! The week after Easter will be filled with new scans and tests to give them baseline measurements and we are scheduled to begin this new treatment sometime during the last week of April.
So here we are…thankful that God has provided and curious to see how He will use this clinical trial in Bennett’s body. But we are also very nervous. The next three weeks are critical and we need everyone joining us in prayer. We need God to put a permanent halt to this disease advancing any further. We have trusted God all along to be the Healer in Bennett’s life and we are trusting that He continues that in a powerful way over the next three weeks as well. Here are a few specific prayer points going forward.
- That the disease stops spreading and God would supernaturally begin to shrink all spot in Bennett’s lungs and on his liver.
- That the spots in Bennett’s lung would not keep him from breathing normally.
- That Bennett would start sleeping better. He is still struggling with this A LOT!
- That he would not get any more fevers during this period.
- UPDATE: As I was writing this, Megan took Bennett in to the hospital because of another fever. It turns out that his ANC was 400 which is low enough that they admitted him into the hospital for observation. Bennett will most likely be inpatient through the weekend. Pray that there is no infection causing the fever and that he recovers quickly!
I’ll leave you with a verse that Megan and I have picked out as the “Team Bennett” theme verse.
“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12
As you join “Team Bennett” these next few weeks, remember these words. Don’t be discouraged or dismayed, because that give the enemy the victory he wants. But rather…chose to be joyful because of the hope we have in Jesus. Don’t be anxious or angry that Bennett’s affliction has lasted this long…rather be patient with God’s timing as a sign of your trust in Him. And lastly…don’t just remember to pray…but rather be faithful in prayer. Being faithful in how you pray for Bennett and others happens when you make a plan…when you budget your time in a sacrificial way and tell God that you want Him to move more than you want anything else that could fill that time.
So please, be joyful in hope, patient in affliction and faithful as you #Pray4BabyBennett.