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!

The road to recovery...again.

Today is 3 days since surgery and I am gushing with pride. Dan has come a long way in just 3 short days. Remember I mentioned in my last post that he couldn't use his left arm or hand and barely lift his leg? Well today during his PT and OT evaluation, he was able to walk 200 feet! Granted he had to use a cane and have someone next to him for support, but he WALKED!! And he is moving his arm up and down too. His hand is more challenging but he is practicing. We know it's not dead so in a matter of time, all his strength will be back. Seriously amazed at his strength in such a short time.

Dan spent the weekend in here recovering while watching TV. Really, that's all he has done the last few days, I mean other than being online too. We knew he wouldn't be going home until he got evaluated by the therapy team because they talked about him possibly going to a rehab facility for a week or so to jump start his therapy and we wouldn't see them until today.

The PT was very pleased with his strength. She got him up out of bed, tested his balance standing, fitted him for a cane, and took him in the hallway to practice and even attempt steps. He did very well and said that since he's 'borderline' meaning he could really benefit from inpatient rehab but as long as he has 24/7 supervision, she would OK him to get discharged to home but she had to wait until the OT eval was done. The OT was also very pleased with all the tests she performed. She tested all of his fine motor skills, mental memory tests (I failed it but he passed, lol!), and more. She did find that his left foot was tight and he has a drop foot or foot drop (can't recall all these terms) which is a weakening of the muscles that enable him to flex so he has to wear a boot that puts his foot in a 90 degree position. It has to be worn to sleep and during the day (4 hrs on/off). That should be fun for him. So basically, both agreed he can go home and immediately begin his outpatient PT and OT again. Whew, one step closer to our family getting back together. We have to wait for the surgeon to give his green light too so crossing fingers it's tomorrow.

Tomorrow morning, Dan has an appointment with his radiation oncology team who we actually already met last week. We had a consult scheduled but due to his unexpected hospitalization, they came to his room to do it. Dr. Kleinberg is a radiation oncology expert at the Kimmel Cancer Center here and he specializes in brain tumors and specifically glioblastomas. He came to see Dan on Wednesday of last week which was a really bad day for Dan but I was able to meet with him and his fellow to go over what is expected, side affects, etc. So tomorrow at 9 am Dan will have his 'simulation' appointment and get fitted for a radiation mask. The mask is made of a plastic material and helps position the head when treating the brain during radiation. I believe they said he will get a CT and MRI tomorrow too that are used for treatment planning. Than a team of doctors and super smart physicists get together and simulate his treatment. The simulation takes a week and than Dan is able to begin treatment - which will probably be in about a week and a half.

We are also supposed to meet with the chemo team but they won't meet with him while he's inpatient so it will be delayed a week due to the holiday. We did have a short consult with them on Thursday of last week too and again, his team leading with Dr. Holdhoff is an expert in malignant gliomas.

So that's all I got for now. Dan wanted me to let everyone know that he is doing great!

Here we go again.

Warning - this is long!

We did not expect to be back at Hopkins until Dan's treatment was to begin but unfortunately he had a pretty major setback this week. He was recovering so well, really. He was even back to himself bitching about my driving and asking to start driving himself soon (which terrified me, not going to lie!). And I was back at the office pretty regularly since my mom was there to prepare meals and my stepfather to drive him anywhere he wanted to go.

So let me backtrack a bit...

Monday - My mom called me at work around lunch saying he had not gotten out of bed and had a headache. He had an OT appt and didn't want to go. He texted me before I left the office asking me to call his doctor to see if we can increase his Decadron which is the steroid he's been on that helps with pressure. He said he was feeling a lot of pressure. When I got home later he progressed to vomiting and couldn't keep the pills down. I was pushing to go to the ER but Dan insisted no. I called the on call neuro once everyone was in bed and he asked me a list of questions and advised me to try to keep him comfortable and get through the night and that if we went to our local ER they would hear his recent history and get him transferred out which is no fun after hours.

Tuesday - I was up half the night with him and emailed Dr. Weingart with a list of his symptoms at a very early hour because I knew something was seriously wrong and he needed medical attention ASAP. I was surprised to get a reply at 6:30 am telling me to bring him to the Hopkins ER. Getting him up to go was difficult since he was so sick and I felt so incredibly helpless. It's so hard watching your spouse in so much pain and there is NOTHING you can do. NOTHING. He was immediately taken back upon arrival and after speaking with the neuro resident and the CT scan showed swelling, they told us he was being admitted. He got settled at around 10 pm and I went home to rest and to be there when the kids got up the next day.

Wednesday - I dropped off the kids and headed down to see Dan and I cannot even explain how I felt seeing him. I guess i expected to see him sitting up watching TV and that the meds would've kicked in over night. I was wrong. There just are no words and I think it was the first time I cried so hard that a nurse had to comfort me. Dan was so out of it that he didn't even notice. I mean, WTF happened overnight was my question. When I left him on Tuesday he was able to walk to the bathroom alone and when he asked me to help him when I got there, I had to call for help. His left leg was just too weak to stand on and hold his weight. He was in a ton of pain and just moaning in bed begging for morphine. He was taken for an MRI and his severe pain lasted ALL day. He had double vision and pretty much kept his eyes closed all day too.

That afternoon, Dr. Weingart came by and delivered the news we did not want to hear. The MRI showed that the tumor that they couldn't get to fully last time has already increased in size - hence the fast onset of symptoms - and he would have to have surgery again. He explained that this time it's very risky based on its position and we won't know until after the surgery if his left side has movement or not. Seriously, it's not even a month and it's grown. And his symptoms were wayyyy worse than even before the first surgery. My head was spinning and Dan was barely awake so I just had to leave the room to process it all. Thankfully my sister and friend dawn were there to be the voices of reason. I came to terms with the fact that he was in the very best hands possible and even if he had limited motion on that side, he was going to be alive and that was all that mattered.

Thursday - Dan made a big improvement when I arrived on Thursday morning. He was up in bed watching TV and said he was no longer in pain. He immediately asked for his phone too which is always a good sign. We found out that surgery was scheduled for Friday so I caught up on work in the room while Dan hung out and even had a visit from his two buddies (Stalls and H as he calls them). I have to say that it was so great seeing him laugh as they reminisced and talked sports. Dan had a smile on his face most of the visit and I realized just how much I missed that smile. So while he had a distraction, one of my best friends Mimi arrived for me. She came to give me a hug and bearing magazines to help occupy my mind with something else. Since Dan was doing so well, I was able to leave to get the kids and have dinner with them. I needed it and so did they.

Friday - Dan was taken to pre-op at 11:00 and surgery was to begin shortly thereafter and expected to be done by 3:30. It was a long day of waiting. Those magazines came in handy and I did a lot of anxious eating. Finally around 5:30 they took me in to see him. He looked good and was very sleepy unlike last time where he was up telling jokes. He did immediately request a chocolate milkshake though! He was also very happy to see Rosemary again, she took care of him after his first surgery. She's just a sweet sweet soul.

Dr. Weingart came in to give us an update on know it went and said he was very pleased and was able to get the whole tumor out but (there's always a but) there are cancer cells in there that need to be treated with radiation and chemo ASAP. Additionally, these glioblastomas like to come back which is why treatment is so crucial.

Saturday - We did find out on Friday that his left side was in fact affected after surgery, and Dan was not able to lift his arm and his leg only a little bit. We've been told some of the lack of movement is from the swelling after surgery and it should continue to improve each day. He can't yet move his fingers on that hand but I saw the thumb moving when the nurse asked him to give a thumbs up and tonight he lifted his arm up a little by himself and it brought me to tears. I could see him willing it up and there it went. That's huge! I know he will get this movement back and it may be slow, but he's got the will and strength.

The rest of today I spent keeping him company while he watched sports. He was moved out of critical care tonight and he has his appetite again and hopefully should catch up on all the meals he missed the last 4 days. When I ask him how he feels he says he's ready to move on and recover at home. Atta boy! Last time he was discharged in 2 days but this time they plan to keep him longer I think due to the left side weakness. Hopefully he proves them all wrong and he gets out in 2 days again.

This is so long and I'm exhausted but I have to add that I find comfort seeing familiar faces since this is his third time on this floor. They all know us and our story and are just full of compassion. You never want to say "it's good to see you" under these circumstances but really, it's good to have the same faces caring for him.

Thank you again everyone for reading and sending all your thoughts, positive vibes, and prayers. They must be working!

Three weeks later.

This may turn into a whiny post but I feel like I am allowed to whine right now. I am sick (literally I have a cold) and exhausted. This weekend is 3 weeks since Dan came home from the hospital after his brain surgery. What a crazy and busy few weeks it's been. I am not going to lie and sugarcoat things since I am just not that way, I will be honest and say I don't like our new normal right now. Not.at.all.

The past 3 weeks have been full of taking Dan to his PT and OT appointments (with the help of some family too), keeping track of his meds, running errands, taking the kids to birthday parties, driving them to and from daycare (since we are trying to keep things normal for them), keeping up with Dan's appetite, making sure everyone is getting lots of love, kisses, cuddles, and attention....oh and did I mention I work full time?! So basically if my parents weren't here, we wouldn't be eating or have any clean clothes or dishes.

Don't get me wrong, life was hectic prior to his brain surgery since we do have a 2 and 4 year old but now I am doing it all alone and this is not what I signed up for at all. I just want my husband back to the way he was before and I want my kids to have their daddy back rolling around on the floor making forts out of blankets and pillows and playing hotwheels and football. I'm not the fun one. That's Dan. He's the creative one making garages out of shoe boxes, teaching them what every make and model of their hotwheels cars are and making a game out of every car ride too. I just want to yell and scream that it's not fair and trust me, I do yell and scream but never in front of my kids and husband. I guess the "why him, why us, why now" is normal but really, WHYYYYYYYY DAN?????

So every weekend around this time when the kids are fast asleep and I finally get to sit down, I give myself a huge pat on the back that I made it through another weekend. That sounds so silly but it's not even a joke, I say to Dan "I made it! and he says "good job babe." I think to myself how much longer will I have to do this alone? I hate this unknown and I know Dan does too. I cannot even imagine how he feels and he's not the best at communicating his feelings. I ask him often and he tells me he is ready to fight. He is brave and I need to be strong and brave for him too.

This week is the week it will all begin. Dan has been scheduled for his radiation and chemotherapy consultations. We've been told his treatment will begin immediately. I will update at the end of the week once we know more.

Keep the positive thoughts and prayers coming. Your words of encouragement truly lift us up.

Thank you!

p.s. I realize this post is all over the place rambling but you can see how my mind is working these days!

What Cancer Cannot Do.

Last night as we were leaving Carson's end of season soccer team dinner, one of our friends handed me a bag and said it was something for Dan and I.

Let me back up and explain more about this friend. We met Jenn and her husband Tim through our sons who were in the same daycare for the past few years. I used to see them at pick up and drop off and say hi in passing but vividly remember the time they sat behind us during one of the school's performances when the different classes sing for the parents and as Tim cracked jokes and Jen nudged at him to stop I thought, they are just like us! I knew I liked them. They seemed like a lot of fun and as we got to know each other through school events, t-ball, soccer, etc, I was right. They are just like us.

So after the kids settled in bed, we opened the card and bag and there was a framed poem with a heartfelt note from Jenn explaining that this poem was passed back and forth to Jenn and her sister when Jenn's nephew was diagnosed with Lymphoma as a young child. This child is now a healthy active boy who beat the cancer but I get chills just thinking about what her family went through at the time as no child should ever have to deal with something so awful.

Here are the words from the poem:

What Cancer Cannot Do
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the Spirit.
- Author Unknown

Thank you jenn for sharing your story and for passing on the poem to us. No dry eyes for us last night, that's for sure. We were very touched.

Just like daddy.

The boys always want to be just like daddy whether it's wearing Ravens gear, hoodies, baseball hats, etc and now that Dan has his hair buzzed, Carson wanted to be just like him!

Dan has always taken the boys for their haircuts and had been going to the same place for years. Carson started going when he turned 1 so even though it's far from where we live now, he continued to go since the boys were used to it. If you have a kid, you know how traumatic it is when they get their haircuts for the first few times, right?! Tell me it's not just us. LOL.

Anyway, I was just not into traveling that far and the boys really needed hair cuts. Carson decided he wanted to look just like daddy so he got buzzed on Saturday. Doesn't he look cute?! He is so proud of his new buzz cut and telling everyone he looks just like daddy!



By the way, my friend Lisa owns a salon in Bel Air and cut it for us. So if you need a good salon you should go see her! We have been friends since HS and she really does a great job. I get my hair done there too. Her salon is Subtle Rebellion. Tell her I sent you!

One week post op update.

Thank you everyone for reading our story and for the comments of encouragement and thoughts. We have read every one of them and will continue to do so as we move forward so keep them coming - Dan needs all the thoughts he can get!

Dan had his 1 week post op appointment yesterday with Dr. Weingart. It ended up being a very long day since he was running an hour and 45 minutes behind schedule. We had a lot of time to wait in the Hopkins Outpatient Center where the docs take their appointments and believe me when I say, you see things that make you so humble and things we take for granted like being able to walk and talk.

So it started out with Dan getting his staples removed which he was dreading. He kept thinking they would need to put some numbing cream on it but I told him, no, they have a tool like one we use on staples for paper and do it that way. I had 2 c sections and my 6 staples were nothing compared to his almost 50 but at least I can understand how it works! Dan said it didn't hurt after all and was just a quick pinch and time went fast since Dr. Weingart was talking to us at the time too.

I have to add that every time I meet him, I am more impressed. He is just so nice and caring and gentle and has the best bedside manner. He doesn't rush through anything, he takes his time and makes you understand every word he throws out at you. He genuinely cares and it shows through and through.

Once the staples were out we sat down to talk since he did receive the full pathology report and told us that what the pathologist saw during surgery was confirmed. Dan's glioma is "high grade" which is something we did not want to hear. I wanted to go in and have him tell me it was low grade and actually had a dream about it too. A high grade glioma basically means that he has a malignant brain tumor (writing that makes me want to get sick). Gliomas are rated in grades unlike other cancers where they use stages. Gliomas originate in the brain instead of coming from elsewhere in the body which means they don't spread. High grade gliomas are fast growing and may come back and sometimes more than once. He explained that they cut him in a way to be able to get deeper should Dan have to undergo multiple surgeries down the road - something he has done many many times with other patients since they often recur.

So what next?
Dr. Weingart said "Dan is on the Hopkins bus and they will tell him when to get off." We have to wait for the oncology team to call us to schedule his treatment plan. The plan will be radiation and chemo for 6 1/2 weeks 5 days per week. He than will immediately begin a more aggressive chemo pill for 6 months. He has to get an MRI one month after his last radiation treatment to see how his body responded and than every 2 months thereafter.

I mentioned in my last post that Dan had his evals for PT and OT which will work on his balance and strength. PT begins today actually.

So right now we just wait for the treatment schedule and try to live our lives in the most positive way that we can.

One day at a time.

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.

The other apple doesn't fall far from the tree either.

Anyone that knows us knows that we are very organized and neat, and we really hate clutter! I posted back when Carson was around 23 months old that he was showing signs of neatness (you can read the blog post here).

Well today after Dan got the kids in the car I looked over and saw that Tyler had lined up all the ride on toys along the fireplace. He had been playing with them all but I wasn't paying much attention to what he was actually doing with them since I was too busy trying to get out the door for work.

This makes me so happy and that probably sounds crazy but who wouldn't love a neat child?!

Carson's 4th birthday party pics!

We celebrated the day before his birthday with his friends at a bouncy place nearby and he had a blast. So much fun that he didn't speak to me the entire time! Every single time I tried to stop him, he would run away. I think he thought I was telling him it was time to leave or something. The 2 hours were a complete whirlwind.

Here are a few pics of the party.


Looks like daddy even had some fun....


Batman cupcakes.




The baby brother was along for the fun.


And than the next day on his real birthday, we celebrated at home with grandma, and aunt cara and family with another batman cake!



Happy Birthday my little love. I hope your 4th was everything you wished.

My letter to Carson on his 4th birthday.

Dear Carson,

I can’t believe you are 4 today. I know you’ve been telling everyone you are 4 for a while now but guess what, now you really ARE 4!!! I get so sentimental on your birthdays and I always go back and look at all the pictures I have taken over the past four years. I am truly amazed at how big you are now. You have grown into a sweet, confident, funny, intelligent, witty, sensitive, and silly little man.

I still remember all the vivid details of the day you were born and how you took your sweet time to make your appearance 9 days late. You were my first born. I always wanted a boy and you gave me that gift. YOU made me a mommy. I had no idea what I was doing but you were such an easy baby. Your giggles and smiles always assured me I was doing it all right. You slept through the night very early on and I used to check on you obsessively (just ask daddy) to make sure you were ok. Oh how I Ioved watching you sleep. In fact, four years later I still sneak up to your room when you fall asleep just to watch you. I don’t think I will ever stop loving it.

I love the little person you have become. Your imagination at the age of 4 is hilarious and I just love listening to you tell us stories. You are a great big brother and I know you can’t wait for Tyler to get a little bit bigger so you can really play together and I assure you it’s only a few short months away.

You have made me a better person. You taught me how strong I am, how capable I am to have a career and take care of my boys. I miss you so much when I am at work and love when you run to me with that great big Carson smile when I pick you up so please don’t ever stop. That smile on your face at the end of a long day and the way you tell me all about your day on the way home makes it all worth it.

I love you stinker. And please take your time getting to 5.

Love always,

Mommy

Top Banana.

Carson's class theme is monkeys and prior to him being in this room he used to call it 'the monkey room' and now he's so proud to be one of them! Each week a child is selected to be "Top Banana" and last week was Carson's turn. The teacher sends home a sheet that we need to complete which is basically an interview with him. They also ask for you to work with your child to select their favorite photos to showcase and he gets to bring in his favorite book. Only he couldn't just pick 1 book, he brought in 3. I wonder how may times that has happened!

So I got out our external drive where I save all of our photos and we took a trip down memory lane. I let him select his favorite 5-6 pics. I think it was actually way more fun for me than him getting to look back on 4 years worth of photos and reminded me I need to do it more often.

Here is a photo of the bulletin board with his spread of pics and his interview sheet. I know you can't read it so here were his answers, and I promise these were ALL from him and completely unprompted....even the one about mommy (melt!).



My favorite color is - brown
My favorite book is - my 3 Curious George books from my cousins
My favorite movie is - The Bee Movie
My favorite sport is - soccer
When I grow up I want to be a - police man, no wait...I actually want to be Ray Rice!
I'm special because - my mommy loves me
I was born in the state of - Maryland
My favorite food is - pizza
I have a pet - NO!
The person I most admirer is - my baby (he calls Tyler his baby. This made my heart melt too.)
My favorite school subject is - housekeeping
My brother's name is - Tyler
My sister's name is - I don't have one of those.

Countdown to 4.

One week from today, this batman look alike will be the big 4. He is so excited and asks every day when he wakes up if today is the day of his party. Yesterday he had me run down the list of friends from his class who are coming and as I said their name he told me what gift they got him. I guess this is the topic of conversation in a preschool class. I can see it now "so what did you get me for my party?"

He is all about batman and super heros right now so he walks around in this costume on a regular basis! Oh and he changed his mind a few weeks ago and wanted a Ke$ha cake instead of a batman cake but I am glad I talked some sense into him and we are back on track with batman. What 4 year old even knows who Ke$ha is anyway??!! It would have been hilarious if I actually did print a cake with her on it.

Makeover

The blog got a makeover today. I found a perfect free blog template to use and spent way too many hours of my precious time while Tyler napped today perfecting it and I could not get all my old posts to format correctly. SOOOOO I decided to just go with a basic blogger template instead.

This is all for me by the way. I needed a new fresh look to kick start me into blogging my kids lives again. So hopefully this means I will be posting a lot more soon. I am sure you will love that mom and my 3 other loyal readers. : )

Tyler 19 months - words

I have terrible momnesia and just cannot for the life of me remember anything these days.

Tyler has been talking like crazy lately and adding more and more words to his list. Some of them only we can understand or he just uses the first half of the word like how for house while he points to a house in the book but he knows exactly what it is and trying his best to show off his skills to us. He is so good at picture books now and either says the word or makes the sound. Many of his words are perfectly clear though too. So I made a list while he was napping this past weekend and before I lose this piece of paper that has been in my bag for 5 days, I need to write it down.

So these are the ones I remembered on Saturday:

dada
mama
bubbles
water
milk
chair
tree
tractor
momo (carson's lovey)
lovey (his lovey)
baba (his paci)
hot
sock
sticker
pretzel
cracker
not nice (said to carson all the time, hahahaha!)
eye
nose
book
bath
fish
house
choo choo
hi
bye bye
apple
banana
burger
pizza
trash
umbrella (totally surprised me but his teacher said they teach the weather and he loves to say brella!!)
up
doll
hat
bath
towel
more
ball
shhhhh
waffle
uh oh
whoa
no
hello
puzzle
phone
more
elmo


He also does some 2 word phrases like nigh nigh dada, bye bye dada, up mama

He does the following sounds:
elephant
lion
monkey
dog
cat
duck
pig
owl
bird (he won an award at daycare for best bird caller "caw caw caw")
sheep
cow
horse
fire truck
race car
motorcycle

I love this age!!! LOVE it.

edited - I added a few more words I heard the day after I posted!

How to entertain an 18 month old.

Well at least my 18 month old.

All you need is a plastic laundry basket and a deck of cards as shown below....


At this age they love to push things around and take items in and out of larger items as you can see....he kept dumping and cleaning them all up over and over.


And then push the basket all over the house cackling along the way as I chased him...


Dump and repeat...


See, hours of fun! Who needs remote control cars and expensive toys when you can look around your house and let them have at it. : )

Back to Santa...

I just found this pic on my computer and had to show you what I meant by being afraid of Santa. This is how far away Carson stayed from the sweet old man, or rather young man dressed as an old man. I guess he didn't fool Carson!

Busy...Busy...Busy

That is the only word that summarizes us right now. I did make a commitment to blog more often and than haven't logged in since. So here is my very short update on us from the past few months!

We had a great holiday season. We celebrated Thanksgiving with our wonderful neighbors that took us in for dinner since we never have Tday plans. The food was delish. We actually hosted Christmas here with my FIL and his wife Nancy (Pops and Nan as the kids call them!) on Christmas eve, and Christmas day with my MIL and sister and her family. My sister ended up getting called into work so my BIL and nephews came alone until she got off of work. The kids had a blast and got so many nice gifts from everyone. THANK YOU!

Here is a pic of Carson with his pilgrim hat he made at school....


And our visit with Santa. Tyler took one for the team since Carson stood 50 feet away!


Than January rolled around and work has been super busy. There is literally no down time at all. It definitely makes the days go faster though so that's good. This month was fun though.

Tyler is now 18 months old and soooooooooooo much fun. His vocabulary is really increasing and he's so darn smart. He understands anything you tell him to do now, he knows all the obvious body parts, and his animal sounds are hilarious, esp the monkey which I take credit for teaching him! He sleeps great and eats great too. We really cannot complain much at all I guess. He did have the stomach bug earlier this month but after 24 hours he was back to normal.

Tyler at 18 mos...


Carson is going to be 4 in a few months and he moved up to the 4 year old preschool room this month. He's 4 going on 14 I swear. He keeps us on our toes. Right now he just loves to sing and dance all the time and make us just sit and watch him. He is still really into hotwheels cars but also now obsessed with superheros. He started indoor soccer this month too which we thought would wear him out and make him nap but no such luck. He's got so much energy it's crazy.


I have to run since Tyler just woke from his nap and apparently I am the only one that can walk upstairs to get him.

More updates soon!