Home. Recovering. Treatment. Etc.

I wasn't sure what to title this post since so much has happened since my last post and I can barely find a few minutes to sit down and update. The day I wrote my last post, I left to go home from the hospital around 8 pm and Dan called me 20 minutes later to say he was being discharged! I tried to talk him into staying the night since he had to be back the next morning very early for his radiation oncology simulation and chemo consult but he insisted on coming home. I couldn't blame him really. It had been a week and he wanted to be in his own bed and get a nice shower too because truthfully, he was stinky! (sorry honey but I know you agree!) So I turned around and drove back downtown to get him.

The next day was a pretty long day at the Sidney Kimmel Cancer Center and we left there armed with so much information and felt educated on what was to come. They did an MRI and CT scan and did his mold to build his radiation mask. We have a fantastic nurse named Ron who is Dr. Kleinberg's nurse (radiation oncology) who was by our side walking us through all the steps of the process and showing us the ropes. After that, we met with Dr. Holdhoff again (medical oncology/chemo) and he showed us all of Dan's MRI scans from the past month, discussed the position, size and shapes of the tumors, walked us through the oral chemotherapy procedures, side affects, survival statistics, etc. He showed us the tumor cells and where they are located and that even though Dr. Weingart did a great job on the resection, they can never get all of these types of tumors out during surgery because they have tentacles that cannot be seen under a microscope during surgery.

I am not going to lie. When Dr. Holdhoff was explaining why they use oral chemo alongside radiation therapy , it was hard to hear Dan ask the question "how well has it been working?" I knew at that point he wanted to know what his chances are of survival because up until this point it had not been discussed and we've been told to stay off the internet. Dr. Holdhoff explained that since Temodar (the oral chemo drug) has been introduced, survival has increased about 20% each year since 2005. So before Temodar, they studied a group from 2000 to 2005 and the average survival was 12-15 months. Typing that out just now makes me so disgusted and sick to my stomach. I want to scream. HOW?!! How can there not be a cure or reason???? He also said there are people living at 5 years and we are holding on to that hope. That Dan will beat those odds and be living even longer. We know Dan is tough and he is going into this with good spirits and fighting HARD. Just like all of his friends are saying "he's got this."

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Fast forward 2 weeks - Dan got his staples removed on Thursday last week and he won't see Dr. Weingart again until 11 weeks which is his next MRI. He started treatment this week and is taking Temodar everyday, one hour before treatment (which is at 11:30 am 5 days per week for 6 weeks). After the 6 weeks of radiation, Dan gets a 4 week break and than an MRI which establishes new baselines, not to see if treatment worked since apparently the area can look very aggravated from the treatment. Next he has to take a higher dosage of Temodar for 5 days per month for 6 months and an MRI is repeated every 2 months which at that point they can see how it's working.

What else? He will probably feel some fatigue and just a general feeling of lousy. They said he will probably feel fine though for a few weeks so I am crossing my fingers he is fine for the Ravens playoffs. He's on an antibiotic since his immune system can be compromised and there is a risk of a particular type of pneumonia. We meet with Dr. Kleinberg (radiation oncology) every Monday in addition to him getting blood drawn as well to watch for signs of anemia, low platelets, etc. so we also meet with Dr. Holdhoff's nurse every Monday to go over his labs and how they are looking. He is also taking Zofran to prevent nausea but they say it's pretty rare with the oral chemo. Oh and he will probably temporarily lose his hair in the area being treated but that's ok, Dan is known to rock the winter hats all season long anyway. (see pic I took in the waiting room on Monday, doesn't he look so cute?!)

Dan is also back to PT and OT since his left side is still very weak. He rates it to about 30% right now and it's very frustrating for him to be so reliant on me for everything. He says you never know how much you take for granted until you are not able to do simple things like putting on a shirt and get in and out of a car. He is using his cane to get around and I see a huge improvement in his stability and just overall walking. He has given me a few scares but we have a good sense of humor over here and take it in stride. It's really all you can do when you are given something like this to handle. He has to continue OT and PT until his strength plateaus which is unknown right now but his therapists both say it's coming back and he just needs to keep up the exercising.

Right now we just continue to ride the Hopkins bus and take it day by day. We are all just happy he is alive and is home fighting. The week in the hospital was taking a toll on all of us and I think Tyler felt it the most. He's only 2 and cannot comprehend all of these changes. My boys just miss their daddy and I hate cancer for turning their little worlds upside down. I will leave this post with the family pic Dan already shared on Facebook taken by our friend Dawn's sister Terri. This was 2 days before we found out Dan's tumor grew larger. I wanted a keepsake of us all together and she captured it for us....


Keep those positive thoughts and prayers coming. Thank you!