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!