I have neglected my blog for almost 6 months and I wished I had an exciting reason to bring it back to life but sadly, I decided that this would be a great place to update and keep track of what we are currently going through as a family - cancer.
Cancer. Gosh that's an ugly word but the fact of the matter is my husband, the love of my life, my soul mate, father of my beautiful boys has it. And one week ago today (October 19th) he had brain surgery.
So let me back track a little bit to explain how this all came about because really, it's sort of crazy that someone can be so healthy one day and undergo brain surgery the next. I have written this story out many times but could never finish it because it just makes it so real. So here is the story. Bear with me since it's long.....
Around the end September he started to complain about headaches. He was never someone that suffered migraines or ever got sick. So he saw a doctor who told him it was probably allergies and to try claritin. I was suspicious and told him that I have seasonal allergies and never felt like he was describing. So a few days later he went back and got a zpack. That put an awful taste in his mouth and he began having a loss of appetite and vomiting. At that time, he also started to have a little bit of blurred vision every once in a while when bending down (putting the kids shoes on for example) and told me he felt a bit "off" when typing.
So a week or so later, he saw an ENT who told him he probably had a sinus infection. She prescribed prednisone and some nasal spray. Again, I was suspicious. I have had sinus infections (he was never sick remember so he never knew what they were like) and mine were never like he described. She did tell him he would get a sinus scan at week 3 if he still felt bad. We went through a few weekends with him having debilitating headaches where he couldn't take Carson to soccer, couldn't eat, couldn't play with the boys or handle the loudness of them playing, or even go with us to get ice cream. He did a lot of lying in bed with a pillow over his head. He told me he felt a lot of pressure and like something was going "woosh woosh woosh" over and over in his head. I admit, I was getting frustrated and told him a few times to go to the ER to get it fixed! I feel awful now that I may have been hard on him and wish I could go back in time and take back my words. It was just so hard to do it all and I wanted my husband back and the kids wanted daddy back too. I even recall him calling my sister Cara a few times for help since she's a nurse and he thought maybe she would have some advice.
By the time the prednisone kicked in, it was my birthday weekend - October 9th and about 3 weeks after the onset of the debilitating headaches. Dan was feeling really good. We were so excited that something finally worked and we went out to celebrate with some great friends. Little did we realize that would be the last hurrah before his diagnosis but I am glad we had fun and laughed a lot that night! That Monday the 10th, Dan was in a golf tournament and came home feeling terrible again. Back in bed he went. He was miserable all week and spent most of it in bed or on the couch again with a pillow over his head. By this point he was still vomiting and losing a lot of weight too.
October 14th - the day our life changed.Dan moved up his sinus scan by a week to figure out what was really going on. He scheduled it for after lunch to see about this so called sinus infection. I didn't even think to go with him. I honestly thought they would see fluid and tell him he had to have it drained. Wrong. He had the scan and was instructed to not drive and go directly to the ER. I was 45 min away at work so he called our good friend Dawn. Thank goodness she was home since she travels a lot for work. She came right over and drove him and sat with him through everything. I dropped everything the minute he called and of course sat in 2 hours worth of traffic. TWO HOURS. I never have traffic leaving work and the one day I have an emergency I can't get home. That 2 hours felt like 8. I cried my eyes out most of it and had road rage too. Looking back, I was irrational. I mean the people around me had no idea where I was going and why. As I sat in traffic on 95 I was calling and texting Dawn for updates and knew she knew something but wouldn't tell me while driving. I finally arrived and both of them just looked at me and I knew at that moment, it was not good. My heart sank the minute I saw their faces. Dan was not talking. I mean what could he say to me at that moment. He just shook his head back and forth. It was not just a sinus infection. He had already had a brain scan and was told there was a large mass. He was waiting to get an MRI when I arrived and an hour later they found 2 brain tumors.
The emotions we felt when they told us cannot even be described. I have tears coming down my cheek just typing this out. We immediately got on the phone to figure out our next steps and got a lot of great advice from friends who we cannot thank enough for the support that night and day after. Around 3 am, we had Dan transferred to the neuro unit at Johns Hopkins (how thankful are we that we live so close too) and he got hooked up with
Dr. Jon Weingart. He actually was able to come home Saturday night to rest at home with surgery scheduled for a few days later.
Dan had 2 brain tumors sitting on top of each other. In the brain, they are called a
glioma. We were told that they had not seen two in this position before and the bottom one was very large and close to the area of the brain that controls your motor skills. They said it was pretty much a miracle that Dan had no issues with his motor skills as a symptom. So going into surgery we knew that one would be removed and they would scoop out as much as they can of the second.
The days leading up to surgery were very hard. Lots of tears. Lots of hugs and cuddles. Calls and visits from family and friends, etc. It was the unknown. We had no idea what would happen next which is why I say we are taking it "one day at a time." I took Dan for a number 2 buzz cut to help when growing in the hair they would shave because if you know Dan, he loves to look good...even if he was going in for brain surgery. Boy that was emotional too.
October 19th - surgery day.We had to arrive at 6 am for an MRI with surgery scheduled for 12:30. All went according to plan. Dan was so brave. I never left his side until they pushed him away into the OR. We were told he would be done at around 5 pm. I was with Dan's mom, dad and stepmom, and my sister Cara and we all waited and waited and waited. At around 2:30 they told me they were closing him up and he would be in the NCCU (neuro critical care unit) and I can see him soon. My initial thoughts were "why was it done so quickly?" but I tried my best to not let my mind wander. I had to be strong for Dan. I wanted to be brave just like him. I cried often but pulled it together by the time the surgeon came to talk to me.
He told me how well the surgery went and that Dan was moving his left side which was great news since the surgery was very risky for the left side of his body. He said what he told us before, that the large one could not be removed fully and that Dan will need chemo and radiation to try to shrink it. He said we will know more details when the full pathology report comes in. I also learned more than I ever wanted about gliomas but it's way too much to include here. More waiting.
Dan was in NCCU for 24 hours and transferred to the brain recovery floor. His nurse Rosemary in NCCU was amazing! She will always have a special place in my heart. She laughed at all his jokes which made him feel special too. The staff on Meyer 9 was also amazing and we thank every one of them. They sent him home on Friday evening. We were just shocked and amazed that it was so soon but honestly, it made it so much easier on us with two little kids who really don't understand what is going on. The left pic below shows him being moved from the NCCU and the one on the right is right before discharge.
We know this is going to be a long road. Starting this week, Dan has had an evaluation for PT and OT and will begin both immediately. PT will be 3x per week and OT 2x per week. He is young and otherwise healthy so they do expect him to rebound quickly on his strength and balance which was what we wanted to hear.
Tomorrow we go back to Hopkins for his post-op appointment and to get his staples removed. Hopefully we will understand more and what the next steps are for treatment.
I know this is long and I left so much out but I just have to add that we had so much support from friends and family and again, words cannot express how grateful we are to everyone. Just the number of calls, texts, and FB messages brings tears to my eyes. From friends bringing over dinner, to taking the boys to play, driving them to daycare, etc. It was amazing and we thank each and every one of you from the bottom of our hearts.
I will continue to update and hopefully our story can be shared with others going through the same thing. I am a very positive person and need to be strong and brave for Dan and the boys. We hope this is just a small bump in the road and remain optimistic until told otherwise.
I am sure Dan is reading this and I hope he knows how much I love him.
