Bennett's Treatment Plan

There are a lot of you that have been joining us in praying that this tumor will shrink and we are very grateful to have such a giant team fighting this with us! Some of you are even asking some great questions about his treatment plan. So, Megan and I thought it would be good to explain a little of how Bennett’s treatment will work and what specific things you can pray for.

Just to remind you, Bennett has an Extrarenal Malignant Rhabdoid Tumor. It is very aggresive, very rare and is caused by a mutation in the cells. This mutation keeps a cell from fully maturing and then it begins to rapidly reproduce other immature cells (we call them stupid cells). And when these immature cells get together, they form a tumor. So Bennett has a tumor in his liver that needs to be shrunk by chemotherapy to a size that it is removable by surgery. And then after surgery, they would do more rounds of chemotherapy and possible radiation to ensure that all of the stupid cells are gone. All of this will take a minimum of…30 weeks! Yes, we will be in Memphis for a long time.

Each chemotherapy cycle last about three weeks. This includes the 1-4 days of receiving the chemotherapy drugs (depending on what type of drug), then 7-10 days of his body experiencing the side effects of the drugs and then 7-10 days of his body recovering from the side effects. Once his body recovers, he can begin another round of chemotherapy. The oncologist is hoping to do one or two cycles of chemotherapy (3-6 weeks) before they do more scans to see how the tumor is responding.

Just a few days ago on Thursday, we began our first cycle of chemotherapy and finished administering the drugs last night. And Bennett was a champ…he literally slept through it every single night! We got released from the hospital tonight and are now back in our original housing at St. Jude (but still in isolation). So now we wait. We take care of our baby and watch him closely as he potentially dips into some harder days with side effects and a lower immune system.

Why does chemotherapy hurt their immune system so much? That’s what I asked to! Chemotherapy is simply the name of any kind of drug that is engineered to kill cells that rapidly reproduce. That is how they target the cancer cells. But there are also good cells in your body that rapidly reproduce…your hair cells and all the cells in your bone marrow…red blood cells, white blood cells and platelets. These are important to your immune system and when chemotherapy targets cells that rapidly reproduce, unfortunately they can’t distinguish the good from the bad.

So here is what to pray for…

  • Pray that Bennett’s immune system does not get weak enough that he can’t fight off the viruses he’s been exposed to. He still tested positive for RSV as well as the flu (yes, you read that right…we are dealing with the flu now too!).
  • Pray for the tumor to shrink away from the vein it is sitting next to. This is what is keeping us from removing it surgically right now. We are praying that it specifically shrinks in that area and makes surgery possible soon. We had an examine this afternoon with our oncologist and she gave us very encouraging news that from the blood work done over the weekend and her physical exam, she can tell the chemo is working. These are good signs! But we don’t want the tumor to get smaller in every area but the one keeping surgery on hold. Pray that it shrinks away from that vein!
  • There is a genetic test we will get results back on in 5-7 weeks that will tell us more about the mutation in his cells. Pray that this mutation is contained to his liver cells only and not present in all the cells in his body. If it is in all his cells, it means that we will have lots of other things that need to be watched for in years to come.
  • We got released from the hospital with SEVEN oral medicines for Bennett. And of course, his least favorite thing right now is having a syringe shoved in his mouth. So pray that he gets used to this soon because we hate fighting him on this multiple times a day.

Ok, are you completely overwhelmed with all of the information yet? It is a lot to take in and we are still processing it and learning more every day. Megan said that any parent dealing with this should automatically get a nurses degree because of everything we have to learn (and this is all way out of Megan’s comfort zone!). Right now they are teaching us how to flush his line on his chest DAILY and then change a valve on it every Friday and then change the dressing on it three days a week. That’s on top of watching his temperature, making sure he drinks something, giving him his oral medicines. I’m tired just typing it all out!

So to end on a fun note, I just had to share the robot that my oldest son Davis made with my dad, “Grandedad”.

And his name is LOWES, of course!

24 Comments

  1. We are still praying for all of you. May God give you the strength you need to deal with each wave of things that come your way. May God give baby Bennett his health as he fights all these illnesses.

  2. Not a day or night I do not pray for baby Bennett and ea of you. Pray is all I can do. Now know more what to pray for. I have a prayer chain going to west Texas. Take care

  3. Your family, especially baby Bennett are in my daily prayers. I think about everything you’re going through as I read your detailed descriptions. I pray for rest, comfort, and strength. May God bless your family with His healing power.

  4. This is a lot of information and thanks for sharing. Our Youngsville Small Group is praying for your family and we will pray specifically for what Bennett needs. Stay strong as we continue to pray for continued healing for Bennett. And may God’s spirit continue to provide what you need to support Bennett through his daily challenges. Much Agape.

  5. Your words are inspiring and I’m so grateful to read the hurdles that precious Bennett (and you! !) have overcome already. .. We will continue to specifically pray for the needs you share and we were so elated to see both Davis and Reide at school today! !! Lifting you ALL up in prayer… We know that only GOD can hold you close and uplift you like no other. .. praying you feel His everlasting love and comfort enfold you and your family. .. love to you all. ..

  6. Praying & asking God to give y’all faith & strength to help your baby boy get through all of this. God bless you & your family! Can’t wait to hear those 2 words at the end of this journey (Cancer Free)!!

  7. I am a friend and co-worker of Beth Tilson. I read her FB post about Bennett. I just want you to know that even though I don’t know you all you are in my thoughts and Prayers daily. May God give you the strength to get you though this. May God lay his healing hands on Bennett and also be with all the doctors as they treat Bennett.

  8. God bless you little Bennett. Right now I cannot sleep. I have read the treatment update blog a million times. I know God does not expect the rest of us to totally understand, but He does want us to fully trust in Him. I pray the rosary. I will be praying one morning and night to give all of you the strength to watch Bennett and God fight these stupid cells and he will be a brave little soldier with the strength of the biggest army of believers as his prayer warriors. Through little Bennett and his journey right now, I am so humbled and in awe of what God has us witnessing.

  9. Thank you for the explanation about his treatment plan. I’ve never had someone explain something as complicated as chemo in such a clear way that I can really understand it so quickly. I’m praying for everything you mentioned, his immune system, the results of the test, the tumor shrinking, etc. Praying for God’s hand to intervene and soon!

  10. Hi Guys! As an RN myself I have decided to grant your wish and hereby name Megan, Honorary Nurse, for her excellent care and knowledge of medical procedure!!!!! Good job!!! Seriously!, you two are doing an awesome job and are amazing parents!!! As we continue to pray for Bennett I am certain God is there with you healing Bennett before your very eyes!!!

  11. Your beautiful Bennett and your family have been in our family’s daily prayers. Our 2 year old reminded us of baby Bennett in the van the other day, so we all said a prayer for him then. Thanks for the updates and letting us know how to pray. Megan will also be in our prayers as she adjusts to being a full time nurse.

  12. Thanks, Ben, for teaching and guiding us just how to praise and pray for Bennett. We will praise God that the chemo is working and we will pray that the “stupid cells” are only in the liver. We also pray for Bennett’s immune system to have strength left to fight the flue. We pray for you and Megan for strength and peace of heart. Because of Christ, Paula

  13. Ben and Megan,
    We were blown away with the news that Bennett has the flu too on top of everything else. Made me think of Job. But we know how that turns out so we are claiming the same. Our church as a whole is praying more than we have ever prayed and your precious son’s name is before the throne room in probably every state in the union. I know I have a group of prayer warriors praying for Bennett in Albuquerque, New Mexico. God has got this. Bennett is beyond blessed to have parents like you too. God bless all of you!

  14. Hello Ben & Megan,
    I recently subscribed to the blog but have been praying along w/many others from day one! Thank-you for the update and please know we will pray specifically for the needs you listed.
    Loved the robot! 🙂

  15. Praying and will continue praying the way you ask. Lifting Megan up. It is overwhelming, but it is doable!! Being a teacher of small kids 34 years, I walked, prayed, encouraged many 5 year old with a port under their shirt!!! Take baby steps !! Breathe!! Take more baby steps!! Thank you for taking the time to teach us how to pray!!!! Much love sent your way!!!!

  16. Ben and Megan,
    I am praying for Bennett. I will continue to pray for the things you asked us to pray for. God’s arms are wrapped around your family!!

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