Wow…what a whirlwind of a day and a half! The people here are so amazing and so much has happened in a short time so I’ll just start at the beginning.
Thursday @ 8am
We were met by a great group of friends and pastors at the airport to pray with us before we left. We had a great time together and felt so loved. We can’t thank them all enough for their support!
Thursday @ 11am
We landed in Memphis and St Jude had a shuttle waiting for us. As we pulled up to the hospital a new sweet friend, Dana, from The Bayou was there to meet us. Her son is a patient here too and she knew we were on our way. It was so wonderful to have someone waiting for us at the curb and helping us find our way. Once we got registered, we went straight to the triage room to get vitals recorded and LOTS of blood samples taken. Bennett has quickly learned that he does not like it when a nurse puts on blue gloves! After we were done there, a nurse began to show us around a little as we made our way to “D Clinic” where patients like Bennett are treated. We met our first doctor who by this time had viewed all the scans and tests done in Lafayette. He confirmed that he agreed with the other doctors that Bennett most likely has Hepatoblastoma…a large tumor that is taking up about 75% of his liver. These tumors can be caused by fetal tissue that stuck around and got absorbed into the liver. The cure for this disease is accomplished only through complete removal of the tumor. Chemotherapy is only used to shrink them in order to make them smaller and then again after surgery to kill any lingering diseased cells trying to spread to other areas.
This meeting is also when we got some good news. While the doctors in Lafayette had said the size of the tumor made it impossible to remove it without chemotherapy first, we learned that there is a surgeon here who specializes in liver tumors and transplants. The hospital is working with him and believes that removal as a first step should not be ruled out yet. We will know for sure on Monday when we meet with the surgery team.
Thursday @ 5pm
After a long day of meeting different nurses and talking with our doctor, we finally got settled in our room. The way St. Jude works is that they have a large campus with many buildings. The main building is their hospital that houses some inpatient care for those who cannot leave the hospital as well as the clinics that treat outpatients such as us. These outpatients stay in one of three different housing facilities depending on their length of stay. Since we don’t know how long our stay is, we are in the Grizzlies House that houses patients and families for up to a week. The facility was donated by the local NBA team, the Memphis Grizzlies and is similar to an Embassy Suites. It is very nice and the staff has taken extremely good care of us. We all ate pizza for dinner and went to bed early.
This is when things started getting interesting. Bennett had begun having fevers in Lafayette but they responded well to medicine. On Thursday night, the fevers returned and continued to go up and down. Megan and Bennett did not get much sleep at all!
On Friday morning, we arrived back at the hospital early to get some new scans that the doctor wanted a better look at. By the time they were done, Bennett’s fever was back up and doing the roller coaster thing it had done the night before…up and down a lot. So we walked over to D Clinic to touch base with his primary nurse and doctor. They had us wait and get checked out to make sure nothing serious was going on. They did a swab of his nose to test for any viruses and also gave us some antibiotics in case he was getting a nasal/respiratory infection. But while we waited, the results of our scans came in and our doctor walked in to share the results.
There was good news and bad news. The good news was that one scan showed that the tumor was not too dangerously close to a major artery in the liver that could have ruled out removing the tumor first. But the bad news was that the second scan showed two spots on his lungs that caused the doctor concern. It appears that the disease has spread to his lungs. The initial scan in Lafayette did not reveal these spots, so we are glad on one hand that God allowed them to be discovered. This way they have a clearer picture of what is going on inside his body. On the other hand, it was very discouraging to hear that the original report was wrong.
After getting the news from the doctor and then eating a quick lunch, we headed back to the room. Bennett crashed and took a great nap. Megan rested and Ben began working on switching Megan’s blog over to being Bennett focused. After Bennett took a great 2hr nap, he woke up with an extremely high fever. We called to see if the nurses wanted to see him only to discover that they were about to call us with the results of his nasal swab from earlier. They told us he has RSV and that he was being “isolated”. What that means here is that we are moved to a different room with it’s own entrance and we are not allowed to bring Bennett into any of the public areas of the hospital or Grizzlies House…for a week.
As we got that news and prepared to pack our bags and move to another room…we got another call. A dear friend that had helped a lot right before we left called to tell us that we had been exposed to the flu. So Megan called the nurses back and I called our doctor in Lafayette so we could all get on Tamiflu quickly. The nurses had Megan bring Bennett in and they put him on an IV to get his fluids back up which helped his fever a lot too. I moved us into the new room and then used a borrowed car to run to a pharmacy to get Tamiflu for the adults. We then all headed back to the room…took our Tamiflu and headed for bed.
Wow. So now Megan and Bennett are asleep…and I’m processing all that has happened since we landed. The ups and downs have been extreme and the RSV is certainly complicating things. So here are some things to pray for immediately.
- Pray that the RSV goes away and does not slow down their ability to begin treatment.
- Pray the surgeon is in fact able to remove the tumor first without having to shrink it down.
- The doctor said the spots on his lungs will sometimes go away on their own. They are most likely too small to operate on so this is a possibility. Pray that they go away!
- Pray that none of our other kids staying with family in Dallas have the same RSV that Bennett has.
- Pray for good rest and health for me and Megan.
I can’t say thank you enough…for praying…for making us not feel alone…and for reading this incredibly long long post! God bless and remember to #Pray4BabyBennett!