Family and friends,

It has been a few months since our last post, so Rob and I thought now was the right time to give our friends and family an update about his progress.  After the holidays, the kids and I returned to school/work.  After discussions with Len and Nancy, Rob and I knew he wasn’t ready to fully be on his own.  We had cameras installed in the house to monitor him as needed, but as a family, we had decided that wasn’t quite enough.  So, we asked Maureen to continue to help Rob through the end of February.  Maureen provided medical support for Rob, while providing all of us the comfort of knowing Rob was in good hands.  Maureen was a blessing for our family.  She helped us navigate through some very difficult times, and we were very lucky that we found her.  

In January, Rob and I met Rob’s new neuro-oncologist, Dr. Jaeckle.  We were so nervous about starting over with a new doctor.  Dr. Jaeckle did not disappoint.  Rob and I felt relieved after our meeting with him.  He told us that at this time, he didn’t feel like Rob needed to continue with chemo.  He felt that the rounds completed before the seizures were enough.  This was great news, as Rob hadn’t been overly excited about having to start treatment again!  Dr. Jaekle then stated that Rob could go without constant monitoring by the end of February, as at that point he would have been seizure free long enough to no longer need 24 hour monitoring.  He also agreed to continue to wean Rob off his steroids.  We left the office hopeful that things were on the way up.  

That all changed Tuesday, February 6th.  On this night, Rob and I were preparing for our trip down to Mayo for his kyphoplasty, which was scheduled for the next day.  A kyphoplasty is a minimally invasive procedure where the doctor injects bone cement into his vertebrae stablize the spine.  The intention of this procedure was to help give Rob’s back strength and aide in the healing of the various fractures he had developed. While he was getting ready, he became unsteady and fell in the bathroom.  He hit his sternum on the bathroom counter, and his head on our bathroom door.  He hit his head so hard he put a hole in our door!  We contacted SunCare (hospice) to see what our next steps were.  The on call nurse told us to call 911 so that he could be evaluated since Rob was on blood thinners and had hit his head.  Rob was evaluated by emergency responders.  We were told that I should take him to the ER to be further evaluated.  They were trying to save us from a hefty ambulance bill.   Although I appreciated the intention, we realized after the fact that we should have had the paramedics take him to the ER.  It was a scary drive to the hospital.  Rob felt dizzy and nauseaus, vomitting multiple times during the trip.  Rob spent a few days in the hospital and had numerous tests completed, however, during his entire stay, we only had 2 brief encounters with the hospital doctors, where little information was shared.   Thankfully the nurses told us that Rob had bruised (not broken) his sternum.  Rob and I felt like it was one of the worst visits for doctor interactions.  No doctor came to check on Rob, nor did they explain what was happening.  In fact, they put Rob on a no food or water diet and then forgot to take him off!  He went almost 3 days with no food and very little water.  When Rob was finally released (still without a doctor ever checking him after the initial ER visit) we came home to settle in. Rob’s sternum was severely bruised.  I thought it couldn’t get worse then a broken back.  I was wrong.  Poor Rob was suffering from an injured back and a bruised sternum and everyday movements were very painful, especially getting up and down.  As a result of this, we opted to push back Rob’s kyphoplasty procedure to March - when Len would be here to stay with us for a few weeks. The procedure requires Rob to lay on his chest and given the bruising and pain - it felt like the right thing to do. This fall really scared Rob and he quickly limited his movement for fear of falling again.  He began to use a walker more regularly to help with his balance and hopefully minimize the risk of falling again.

A few weeks later, Rob fell a second time.  While showering, he started feeling dizzy and nauseous. He was working to get out of the shower and in the process, he passed out.  Thankfully he had his walker with him and when he passed out he fell forward while still holding it.  I was in the bathroom and was able to stabilize the walker so he didn’t fall flat.  Instead, Rob fell to his knees and I was able to rush behind him and guide his head to the ground.  After this fall, Rob became even more reluctant to get out of bed.  He was worried he would fall again and reinjure himself.  

Around this time, we noticed that Rob’s overall demenor had changed.  He was reluctant to eat, was drinking very little water, his right hand had started shaking, and when he did get up, he was very unsteady on his feet.  He had been talking about some issues with movement in his left leg as well, which may have been contributing to it, but we weren’t sure.  In addition, he felt nauseous all day long and had restricted eating so much that he was consuming less than 200 caleries a day.  The lack of movement, coupled with the nausea and appetite loss have made Rob very weak and lacking energy.  We have been trying to partner with his hospice care team to evaluate some options to help with the nausea in hopes that may help increase his appetite and strength. 

When Len arrived this past week he was shocked after seeing Rob in person, how much he has deteriorated since he was last here in December.  Rob was supposed to have this kyphoplasty procedure on Thursday, with pre-op appointments on Wednesday. However, after seeing the condition that Rob was in, we all agreed that it might make sense at a minimum to inform Rob’s neuro-oncologist before making the driving to Jacksonville, of some of his newer symptoms. The team quickly decided they needed to pause moving forward with the  procedure and ordered a CT scan, as his right hand shaking and issues with his left foot could be signs of neurological issues.  

On Thursday, Rob had a CT scan performed.  Unfortunately, yesterday, following the results of Rob’s scan, we received a call from Rob’s neurosurgeon team.  They confirmed our worst fears, there is fluid building in his brain again.  

Rob and I will be heading back down to Mayo this week for another MRI, followed by an appointment with his neurosurgeons to discuss next steps.

We will share another update after our appointment.  In the mean time, please continue to pray for Rob and our family as we anxiously await these next appointments and likely brace ourselves for a 4th brain surgery.