Week 3 done and Christmas.

Since I never did a post all about the boys as promised, this one will have to do!

Update on week 3 of Dan's treatment
Dan completed his 3rd week of treatment and once again, did great. We won't find out his lab numbers until Tuesday since they are closed tomorrow for the Christmas holiday. One thing that did happen this week is his hair loss has begun. I noticed it immediately on Thursday when I came home from work and he was eating dinner at our breakfast bar which has lights overhead. His hair just seemed much thinner in the area being treated. We knew it was bound to happen but just no idea when. He texted me later that night when I was having dinner with friends that he is noticing it too since it's often in his mouth and on his phone. Not even 4 days later and he now has bald patches all over. He is just so positive about it all and is really taking it in stride. He is not shy about it and even let me take some pics to further document his journey. Here is your warning.

If you are skiddish about seeing stuff like this, don't look because I am posting a pic of what it looks like so far.























Oh and a big milestone this week also happened on a positive note, Dan was able to shower today STANDING UP! For the first time in a month he didn't have to use the shower seat. So proud of him.

Moving on to Christmas Stuff....
The kids had a ton of activities going on at school for the holidays. Both of them participated in the annual holiday show which is just too cute for words. Tyler's was a matinee show followed by some entertainment for the kiddos and Carson's was an evening show.

Tyler was supposed to shake his bells and sing jingle bells but had stage fright so instead he put on his own show at home for just us!


Carson wanted to be the center of attention and instead of singing with this friends, he put on his own show of bouncing around, laughing, frowning, and pretty much every other personality you can have but all in a 15 minute timeframe.....here you can see his friends cooperating while he lies flat on his back on the stage. Atta boy!

Christmas came so fast and the day was just magical for the boys. It was also so nice to have Gammy and Poppy here to help out with opening all the boxes and assembling everything - which is something Dan used to do. (((insert sad face here))) They got so much great stuff and it was so great to have them side tracked on just a day to play play play!

Here is our living room right after Santa left, so calm and peaceful.....

And here it is when the tornado came through!














So all in all, it was a really nice day (although I am exhausted). I had a few moments of sadness especially when I was helping him get dressed this morning. I gave him a big hug and told him we just need to be thankful he is alive right now to celebrate and we will look back on this time as just a bump in the road.

Week 2 - done.

We made it through another week and Dan is still doing great. He still isn't feeling any of the fatigue that is supposed to come and his appetite is still raging from the steroids he is on so he's eating non-stop! We got the go ahead to decrease the decadron to 2x daily since they want to eventually wean him off. The side effects aren't very appealing so it would be nice to get him off of it. So I cross my fingers he does well with the lower dosage this time around.

His labs came back fine again this week with his platelet count actually increasing a bit. They don't want the platelet number to go below 100 and right now he's in the 180s. If he goes to 100 or below, he has to stop the Temador and wait until his body builds them back up to begin again. We definitely don't want that to happen since he is on such a great track but it's really out of our hands. Some patients are doing fine one week and the next week they come in and their counts show a significant dip so there's really now saying from one week to the next. Oh and he did gain 5 lbs according to their scale but he did have on layers of clothes and shoes so we (he really since we bickered over this in the waiting room!) estimated maybe 3.

I had mentioned in an earlier post that we are surrounded by amazing people and his radiation oncology nurse is one of them. Today upon arrival we see him decked out in red scrubs and a Santa hat and when it was time to meet him, he came in with his Christmas CD that he recorded a few years back. He always knows how to put a smile on your face and really is perfect for his job. He explained that he plays piano and sings and his friends and family are also featured on the CD. The inside of the CD talks about healing in the cancer world is more than just physical and his words really mean a lot to me even though it's not written for me, it speaks to me. Here is a pic of the cover and of Ron!


Next week we skip our long Monday since they are closed for the holiday so labs will be done on Tuesday most likely.

I hope everyone doesn't think we eat, sleep, and breath cancer because even though Dan is fighting it right now...I am as busy as every getting ready for the holiday and keeping life normal for my boys. I really need to post some pics of them too because if you know me, you know I take a ton of them!

I promise to do a post this week all about the boys.

Week 1 - done.

Dan finished his first week of treatment which means only 5 more to go! He is so brave and such a good sport especially with allowing me to document his journey. If you have ever been curious what it looks like to get radiation, here is your up close and personal view.....the netting you see on his face is the mask I talked about in one of my previous posts and it holds his head steady on the table. He gets comfy and they crank up the music for him too, which I can hear from the waiting room across the hall!


Today was a long day and each Monday will be this way. After check in he goes to the lab for bloodwork, vitals, and they also measure his height and weight. He is down about 25 lbs since diagnosis and although that sounds like a lot, he says it's a good weight for his height - see how positive he is!? And apparently he shrunk too. They measured him about 1/2 inch less than what he's been telling people all these years!

Next was his 11:30 treatment and than we meet with Dr. Kleinberg (radiation doc) and also separately with Dr. Holdhoff's nurse (oncology). So far everything is right on track and his numbers look great with no changes from last week which is the news we wanted to hear.

By the way, Dr. Kleinberg was so backed up today with appts (around 2 hrs wait time) and it's hard to be patient when you are tired and hungry but I kept reminding Dan that all of these people have cancer too. I am just so sickened that so many people are there fighting to be healthy. I look around the waiting rooms and even talk to so many people who are from all over the world (some with translators even) and seeing other young couples like us, it's hard to hold back tears. I found out today that 200 people were coming to the building for radiation - that's just radiation alone in one day. I think the number was 600 that the medical oncology office is treating for chemo.

I will continue to update as he progresses. Thanks for reading!

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!