Pray for our next steps

Bennett crashed out in his favorite place to sleep...Megan's spot!

“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.

  1. That the disease stops spreading and God would supernaturally begin to shrink all spot in Bennett’s lungs and on his liver.
  2. That the spots in Bennett’s lung would not keep him from breathing normally.
  3. That Bennett would start sleeping better. He is still struggling with this A LOT!
  4. That he would not get any more fevers during this period.
  5. 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.

33 Comments

  1. We are praying with you and standing with you. We love your family and be encouraged that many are bathing sweet Bennett in prayer.

  2. Thank you so much for this anxious, sad, happy, joyful post! I will be joyful in hope, patient in affliction and faithful in prayer for the next days, weeks… however long it takes and then some! Love you all!!! k

  3. Continuing to pray for your baby;) Romans 12:12 is what I have lived by for 37 years. It’s one of many totally amazing verses. God is present for Bennett and His angels continue to protect him:)

  4. Praying for you ALL!!! May God’s strength continue to carry your family and help fight this battle for you!

  5. Thank you for keeping us all updated. Your faith and courage continue to amaze and remember you are in our thoughts and prayers daily. May God continue to bless you and your family in the days ahead.

  6. We are praying for you in our church family here in memphis area. Please know our hearts go out to you as brothers and sisters in Christ. You are an amazing testimony of faith through adversity.I know this has to be incredibly painful but thankfully our God loves little Bennett even more than you, as his parents do! Thats pretty inconceivable isn’t it? We are being Good to have mercy on his previous little body and to bring about total healing. Eager to hear how this new treatment is working!! Thanks for updates.

  7. “My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever.” Psalm 73:26. He is more than you need and He is all you need.

  8. Praying for an army of angels to surround your family, and for God to guide every decision for your dear son. Keep the faith.

  9. Well, nuts. Always expecting the quick miracle but I suppose He is on his special mission. bev and I are being the persistent widow in praying for our vision of justice. He will. We love you guys and it’s easy to think of you 24/7.

  10. Praying Psalm 121 over you tonight
    1 I lift up my eyes to the mountains—
    where does my help come from?
    2 My help comes from the Lord,
    the Maker of heaven and earth. (and Bennett)
    3 He will not let your foot slip— (Ben and Megan, He will watch over your every step as you seek Him for guidance, as He has proven already)
    he who watches over you will not slumber;
    4 indeed, he who watches over Israel
    will neither slumber nor sleep. (Not one moment passes that He is not aware of everything that’s going on inside and outside of Bennett’s body and He has authority over it always.)
    5 The Lord watches over you—
    the Lord is your shade at your right hand;
    6 the sun will not harm you by day,
    nor the moon by night.
    7 The Lord will keep you from all harm—
    he will watch over your life;
    8 the Lord will watch over your coming and going
    both now and forevermore.

    He knows the numbers of hairs on Bennetts head and knows exactly how many spots are on his lung….HE KNOWS and we proclaim that He is the watchman and the protector not allowing the enemy anymore ground. We ask that He would set a boundary line for this cancer and say you many come no further. Unless HE watches over Bennett, we all stand watch in vain. Psalm 127:1)

    But as for me, I will look to the LORD; I will wait for the God of my salvation; my God will hear me. Micah 7:7

    Praying, Watching and Waiting with you,
    Jennifer

  11. Praying for you ….from South Africa. Thank you for your testimony of faith and trust in God. You are an encouragement of real faith in the face of adversity.

  12. Father, you love this little guy, so much. Your desire is for all to see him whole and healed, as You see him, whole and healed. We have a hope to see beyond the doctor’s reports, for Your Good.Report will be revealed in Bennett’s body, this day.
    May we all stand in agreement, and take Authority over this heinous disease and call it null and void! It no longer has any hold on his lungs, his liver, nor does it have any place to land elsewhere in his precious body! Be gone, in the power, and by the stripes, of Jesus Name! Fill him now, with Your pure Love, Your cleansing Blood and the Joy only knowing You can bring! Please show him, and his parents, Who You are, in their dreams, Father!
    “So shall My word be that goes forth from My mouth; It shall not return to Me void, But it shall accomplish what I please, And it shall prosper in the thing for which I sent it.” Isaiah 55:11
    All love, all blessing and all honor to You, O Lord over all!
    PS – Would you be interested in an MP3 on a healing Word or a healing journey? No worries, if not. Just thought I’d ask. Peace and love to you all, on your journey…

  13. Will be praying for Team Bennett! 1 Chronicles 28:20 Be strong and courageous and do the work. Do not be afraid or discouraged, for The Lord God is with you. He will not fail you or forsake you until ALL the work for the service of the temple of The Lord is finished. Baby Bennett is that Temple and God has not finished with him yet!!!

  14. I don’t know you at all, but some of my friends have posted your updates, and I have been praying for God to heal Bennett. Perhaps you have already tried this, but have you looked into using a nebulizer with some anti-cancer essential oils? I don’t know how effective it would be but might help you get through the next three weeks 🙂 Here is just one resource I have found – You might use a blend of oils, some more general and some more targeted for his specific tumor type. http://www.anandaapothecary.com/weblog/2013/01/essential-oils-for-lung-cancer/

  15. Thank you for the update. Breaks my heart yet your Faith shines through and Baby Bennett is blessed to have you as parents. Praying always God is faithful!

  16. I had tears of JOY in my eyes reading that the clinical trial opened up OVERNIGHT!! Our God is amazing! We are praying daily and will be covering Bennett in prayers that the tumors shrink over the next three weeks.

  17. Prayers for Bennett. I run for a group irun4.com. I have a buddy that I run for because she can’t but she is awesome I know she wouldn’t mind sharing miles with Bennett. I will just pray for them both while I run/workout. I will dedicate half my miles/workouts to Bennett until he is healed and healthy enough to run circles around us all. (www.irun4.com is an amazing group and you could sign Bennett up to get his own runner if you want. But I don’t mind running for him)

  18. Prayers of strength for your sweet Bennett as he begins this new experimental drug. God Bless his body to heal and allow this drug to cure him. Prayers to your family!

Join the discussion

Pin It on Pinterest