Today was full. Mondays are normally busy…but we didn’t know it would be this full when we woke up. In fact, I had an entirely different post planned to write today, but too much happened that I’m going to have to post those thoughts later this week. So…let me start at the beginning.
We got up this morning like a normal Monday to get everyone fed, dressed and out the door for our regular Monday appointments. We were anxious to get in and talk with our doctor because Bennett actually had a really rough weekend. He has not been sleeping well at night and even though the fever he had on Saturday night went away quickly (thanks for praying!), he was not his normal self on Sunday. He was visibly uncomfortable and grumpy all day. Even when he has recently had chemo, he normally likes to play. But Sunday, he only wanted Megan to hold him.
Then this morning…Bennett seemed to be a little bit more normal. We were baffled by what caused this blimp and were ready to talk to our doctors about it. On top of that, we have been noticing that his stomach looks like it is getting bigger. We have been very concerned as to whether this is tumor growth or from putting on more weight. Needless to say we went in with lots of questions.
Once we got to the hospital and finished getting all checked we got to sit down with our team and share with them everything I just told you. They were baffled too. From her physical exam, our doctor did not think that the larger stomach was from tumor growth, but his diapers have been regular enough that she did not think there was any problem with constipation or water retention. Just to be safe, she ordered an X-ray to happen after our weekly chemo dose was finished. And then we started talking about scans.
We have one scheduled for Friday and we are asking you all to pray and fast for Bennett this week. Please pray and believe that this scan will show two things…
- That Bennett’s body is healing.
- That the doctors get great pictures that give them clear direction of next steps.
Our doctor said she will be thrilled with scans that look exactly like what she saw last time. She has been happy that the chemo seems to be holding this at bay. She wants the scans because the clinical trial we have been waiting on continues to be delayed and there is actually another one that Bennett would qualify for that is open now. She had not discussed this one with us before because St. Jude has no experience with the drug whereas the other we have been waiting on has already proven effective in three other patients with the exact same tumor. So these new scans will help her decide what our next steps need to be.
Once we were done with our doctor, I took Davis and Reide back home to nap while Megan stayed with Bennett to get chemo and the X-ray. Once that was all done, I went back to pick them up thinking we had plenty of time before our evening activities. Tonight we attended the annual Partners In Hope Banquet thanking all of the most loyal and long-standing monthly donors to St Jude. A few weeks ago Megan and I were asked to bring Bennett along and be a part of the program of this event. It was a great time and we were interviewed on stage by the CEO of ALSAC, the fundraising arm of St. Jude. We were so honored to have the chance to thank these 600 great people and remind them of the difference they are making and that God is good!
But remember when I said this day was full? Well, so if Bennett. Right as we were getting ready for the night, the hospital called to tell us the X-ray showed that he was in fact very constipated and that we needed to start giving him something for it twice a day until it clears up. AND…the X-ray also showed something on the bottom of his lungs and they wanted us to rush back to hospital for one more X-ray of just the lungs. So Megan ran back with Bennett while I got dressed and got the others ready for the babysitter. We managed to get it all done in time and not be late…it was a Monday miracle. We will find out the results of the second X-ray tomorrow. They believe it looks like some kind of infection on his lungs and will most likely need antibiotics.
Phew. Now you know why I said this day was full! Scans on Friday…possibly a different trial drug down the road…Bennett’s constipated…there may be an infection in the lungs…and we got to fit in saying “thank you” to 600 people! We’re so tired, Megan doesn’t even have the energy to proof this post! So here is a quick reminder of all the things to pray for this week:
1. Pray for Bennett’s constipation to clear up and to quickly gain back the weight he may lose from getting cleaned out.
2. Pray for whatever they saw on the lungs to be a non-issue and that God get’s rid of it QUICKLY!
3. Pray for the scans on Friday.
4. Pray that Jesus continues to heal his liver, his lungs and his whole body!
I’ll leave you with this thought that struck me today. Bennett does not have a tumor. There is a tumor inside him, but it does not belong to Bennett. It is not his…it is not welcome inside him…and as we pray this week, we need to remind the heavenly host that this tumor does not have the authority to be there. After all, Jesus said this…
“Jesus came and told his disciples, “I have been given all authority in heaven and on earth.” Matthew 28:18
The last time I checked, Bennett’s body falls within Jesus’ authority. Pray this week that everything in his body is obedient to the one who is in charge of his body! #Pray4BabyBennett!