Sunday, August 4, 2019

It’s been almost three months since I’ve updated the family blog, so I thought I would take some time to let everyone know how we’re doing.

I cannot escape the math each Sunday. Tonight marks twenty weeks. One hundred and forty days since saying goodbye. I still don’t want to believe it.

Summer has been cruising along, and three weeks from tonight will already be our first ‘school night’ of the new year. Joey will enter his last year of elementary school, starting 5th grade and Julia will be in 7th grade. I’m excited for the new adventures that await them…and also for that earlier bedtime that happens when you have to get up at 6:15 in the morning!

Our summer has been good, relatively speaking. Honestly, it is so hard to say anything is ‘good’ or even ‘great’ in light of how different everything is, but we’ve made the most of our days as best we can. We’ve settled into a new normal and certainly have our moments, but our love for each other is fierce and we have proclaimed ourselves ‘The Three Amigos.’ I’m so proud of how the kids have stepped up and recognized their new roles on our team.

Summer has been filled with baseball (Joey) and golfing for both the kids…I’ve even managed to golf a few times as well, including at our school’s annual golf outing. We went to a Rob Thomas concert and will be going to see Hootie and the Blowfish later this month, which was a Christmas present for the kids, who have come to love 90’s music as much as their mom and dad, Joey especially.

In mid-July, we welcomed home a new family member.

Back at the end of April we learned, on a whim, that Rudy’s half brother was available to come home in July. There were a lot of pieces to the story, but there were multiple not-so-random coincidences that made us feel like this dog was meant to be ours.

And while Tony loved Rudy to pieces, he had lobbied more than once for us to get another puppy. Back in November, when he last tried, I was quite firm on my stance that would not happen. If you knew Tony, it wouldn’t surprise you that he could still get his way after he was gone. He made sure I heard him loud and clear. The thought of having a new puppy to love and something to look forward to just felt right.

And let me tell you, it does feel right.

Meet Rex.

Don’t let Rudy’s stoic look fool you…he loves the little pup.

Tuesday will mark three weeks since he came home, and while I had plenty of moments to question my sanity and wonder why I thought this would be a good idea, he has been the highlight of the summer. He is a wonderful, mild mannered little pup, and immediately attached himself to Julia, who loves him to pieces. My heart feels best when we lay on the floor playing with him and the kids are giggling watching him hop around.

And as for Rudy…I was most worried that he would act out or not be happy with our new addition, but things have been going really well. At six years old, Rudy’s not quite as excited to hop and play with a boisterous puppy, but other than that, he keeps an eye out for him and even will drop his toys for him to play with. Tonight they even ate dinner together. It’s gone better than I could have hoped.

This weekend we celebrated Joey’s upcoming birthday…double digits! It was our first birthday party at our house since, and Tony’s presence was missed so heavily throughout the night. While I joked that I didn’t have any pre-party squabbles yesterday afternoon as I was getting things ready, I caught myself more than once thinking Tony was in another room or found myself trying to catch a glance or listen for him. We had a wonderful night, but we all had our moments after everyone left and we talked about how much it hurt not having him there.

The family picture.

Every birthday, without fail, we stand by the cake for a family picture. As I looked at this picture last night, it was so bizarre to look and not see him standing there. Instead of the four of us and Rudy, it was Julia and I next to Joey with a dog on each side.

Don’t get me wrong, this picture makes me happy – our smiles are genuine and I love comparing the pictures year after year to see how much the kids have grown. But in the same moment of happiness exists the gut wrenching pain in knowing that there won’t be any more pictures with Tony in them.

I’ve been keeping busy just trying to keep up – I’ve learned that in most circles, widowed parents refer to this new gig as ‘solo parenting.’ While I’m new to the solo parenting world, I can verify that it’s thoroughly exhausting. And I have a lot of family and friends to help me. It’s just lonely being the only adult in the house and not having your person to talk to, watch tv with, grab dinner with…doing anything or nothing feels so empty.

Researching and learning about grief has become a big part of my life. Finding connections and realizing that your feelings are not unusual brings comfort. I’ve joined groups and made new friends who are in the ‘club’ that nobody wants to be a part of.

As writing seems to bring me some peace, I have also started a separate blog called www.livinggoodgrief.com to help me journal this new path I’m on. It’s a different type of blog – I write a lot about my grieving process in general and how I’m processing my feelings. It’s not about the kids – their grief journey is not mine to tell. I’ve only written a few things so far – life is busy and I don’t always have the energy to sit down and put my thoughts into written words. While it helps me to express my feelings and put things out there, I feel even better when I see comments from others experiencing grief who tell me that my words are helpful to them. It’s encouraging on many levels and I hope to continue sharing as I move forward.

Well, I guess I had a lot to say tonight. Thanks for listening.

Love,

Jen

Happy Mother’s Day – May 12, 2019

It took me all day to be able to say it and legitimately mean it…so before the day comes to an end –

Happy Mother’s Day to all the wonderful women in my life, each and every one of you.

I’m sorry for those of you who came across me earlier today or in the week – I truly wanted to erase today from the calendar all together. I’ve been bitter, angry, and unaccepting of any love that has come my way. I’ve felt like a toddler, wanting to kick and scream because I want something that I cannot have – my husband, alive and well and living life together with us. And all week, nothing could even come close to making me feel better about it.

I felt the absence of loud whispers and the exit strategy after dinner to go on a shopping mission in anticipation of Mother’s Day. To have them pick out the most obnoxious (yet loving) cards to give me. I didn’t drop any hints nor were any online orders were made and shipped in Tony’s name.

I went shopping for cards for my mom and mother-in-law…and it seemed all I saw on the racks of cards were the ones that said ‘From your son and daughter-in-law’ and ‘From your daughter and son-in-law.’ I swear, every other year I’ve looked for those there are only one or two on the racks. This year, they had dozens. These are the little things that you don’t think will get you, but instead, will leave you with tears running down your face in the card aisle and quickly picking cards because you just can’t do it. (Sorry to both Moms if the cards didn’t feel quite right – I couldn’t do it this year and grabbed them quickly.)

On Friday, the kids and I came home to a special delivery of flowers for me from the kids. The kids told me that while numerous people reached out to them to see if they wanted to go shopping, they declined all of them and said they wanted to take care of it on their own. A special someone understood and said they’d still take care of sending flowers. Again, my heart broke – because I didn’t know if the kids didn’t feel that it was okay to say yes, if they just didn’t feel in their hearts like doing it, or if they really just wanted to do it all on their own.

This week, my level of grief has been different than any other. No matter how busy I’ve stayed, things seem to have caught up with me. I sat through Joey’s first baseball games of the season, fighting back tears because I kept longing to see Tony emerge from the other side of the dugout as he often did or at the concession stand buying treats for younger siblings of players. He was always making rounds at the games because he didn’t sit still on the bleachers and just watch the game.

We also had Joey’s spring music concert this week. It only made me think of his Christmas concert…where Tony came but was in so much pain he couldn’t stay for it. And Joey, bless his heart, never complained or was sad. He always told Tony that he needed to do whatever he could to feel better.

I’m sure you get the picture by now. Memories and grief seemed to come crashing down from anywhere and everywhere. It was like I could physically feel the weight of it all on my shoulders.

I’ve spent more time crying these last few days than I have in weeks. I didn’t know how I was going to get through Mother’s Day without Tony – everything that makes it a special day for me is because of him. I wouldn’t have these amazing children without him. Combine that with the sadness I’ve felt every Sunday since March 17th and that Mother’s Day marks eight weeks without him. I did not want to celebrate this day without him. But on the flip side, I also knew that my selfishness wasn’t fair to my kids or any of my family or friends surrounding me.

Keeping all this in mind, last night the kids and I made some dinner and my mood seemed to feel lighter. We goofed around after supper, went out for ice cream and came home to watch some dumb old slapstick comedy. We settled on ‘Ace Ventura, Pet Detective.’ (Note: Every time I pick an old movie and think it’s okay to watch with the kids I inevitably forget about a scene or two that I cringe through. This one was no different. But, the belly laughs that came from them both when Jim Carrey wanted to ‘ass’ the police officer a few questions made it all worth it.) We had a good night and I went to bed feeling better.

When I woke up this morning, I got dressed to exercise and went to head downstairs. There was a ton of chirping going on outside and as I walked to my kitchen window, a cardinal dove down past my window and into the tree, chirping away. Tony still made sure to be the first one to wish me a Happy Mother’s Day. After I finished my workout, the kids were up and presented me with a beautiful gift – Joe had made a flower for me at school that he gave me on Friday, and both kids presented me with a handmade, beautiful hanging picture that Julia made for me. I could not love it (and them) any more.

We went to Mass and Brunch with the family to one of our favorite restaurants that holds so many memories for us – countless parties, date nights, and holiday brunches. See, the last time I was in the restaurant was to pickup carryout for an impromptu ‘date night’ when Tony had come home from the hospital that he had arranged with Rhonda, the owner. Julia was performing in Shrek that night and Joey went to see it with my sister-in-law and his cousins. The two of us enjoyed our dinner and watched ‘Crazy Rich Asians’ together. We had no idea it would be our last Friday night date night in our den – the following Friday, we were in the hospital preparing to say goodbye. I talked to Rhonda in the same exact spot today as I did when I picked up that dinner she so lovingly prepared for us that night and, you guessed it, more tears were flowing.

After making it through brunch, I had told the kids that I wanted the three of us to do something this afternoon. We decided to head down to Dave and Buster’s and do a little shopping at the mall. In the car they told me stories of their adventures with Tony when they would go to pick out flowers for me or shopping for Mother’s Day in years past. Every time they tell me a story I hear something new and I love that. We had a ton of fun and there was no doubt that Tony was with us…I hadn’t felt his presence so strongly since our day in Disney Springs before we boarded our cruise. Yes, I got sad when I found a dress for a wedding we have next month and wished he’d tell me what he thought of it (because no matter what, he gave his honest opinion.) But the best was when Julia won 1000 tickets and Joe came running over to tell me. As he was telling me, we heard that ‘Fight Song’ was playing, so I grabbed my phone just to grab a note or two of the song. I wanted to be able to remember the moment on another day. Well, then Joey comes back by me to tell me HE just won 1000 tickets on another game. The kids had a good laugh. Of course Tony would make sure they got to pick out over 2000 tickets worth of random stuff while I rolled my eyes. Somethings just don’t change and I’m sure he was smirking the whole time.

I can say that I did have a great Mother’s Day…so many loving messages from friends and family, and spending time with everyone and knowing that we made it through another big ‘first’ on this new journey without him. Yes, it was different, it was hard, but we made it through with happy memories. I’m looking forward to starting a fresh week and hopefully, having allowed this grief and sadness a way out, can take a few more steps forward again.

Thanks for listening.

Love,

Jen

Saturday, April 27, 2019

Tomorrow will mark 6 weeks since we left the hospital without Tony.

As I look at this blog, it has been over 2 years and 10 months since I last posted. Sorry, not sorry. We were busy living life. Here’s the long and short of it – we had good times, we had some crazy and stressful times. In the three and a half years Tony was living with cancer (because he never liked to say he was ‘battling’ or ‘struggling’), he went through three different types of oral chemotherapy, monthly injections of Sandostatin, a liver directed radioembolization, and three rounds of PRRT (Peptide Receptor Radionuclide Therapy) to try to keep his cancer stable. And throughout all of his treatments, he maintained such a positive attitude and the spirit that he could take on anything that came his way. For the most part, we continued to live our lives as we always had until he was derailed by some side effects. At the same time these side effects were slowing him down, the cancer became aggressive.

It is still too heartbreaking to talk about, much less put in to written words. But know that when I drove him to Froedtert the morning of March 14th, I thought we might be in for another hospital stay and might have a rough road ahead. I did not expect that within hours of arriving, we would be told that he would not leave the hospital and start to prepare for last visits from the kids and immediate family, and that by the late afternoon of Sunday March 17th, our lives would never, ever be the same again.

I cannot believe it. Six whole weeks. Spring is supposed to be here, but in a cruel twist of fate I am sitting and looking out my beautiful backyard at accumulating snow and some really confused robins. It’s like this winter just doesn’t want to end. I was feeling accomplished this week, doing a little outdoor preparation for the new season that I am both anxiously awaiting and yet dreading all at once. And now it’s like that’s all been forgotten.

The view outside my kitchen tonight…April 27, 2019.

Anxiously awaiting because I want us to feel the warm sun and be outside. I want to get moving and be active. This winter we endured a lot of time at home – many days off of school, many of which coincided with the 26 days Tony spent in the hospital followed by 21 days where he was pretty much homebound. A polar vortex, multiple snowstorms, ice storms…you name it. This winter was miserable in so many ways and I am ready for it to be done. Gone. And now, this afternoon’s snow is just another reminder of all we’ve been through.

Dreading spring because, well, it is a new season in so many ways. Not only is the weather changing, but our lives will be too. Yes, the kids are looking forward to starting baseball and golf and all things spring and summer…but it’s not the same as it’s always been. There is no more ‘divide and conquer’ in our house – you know, on those many nights that each child goes in a different direction, there is a parent to accompany each one? Nope, it’s just me. Now, please don’t misinterpret that – I am so grateful for the village of family and friends that are here to assist us and the multiple offers for rides and help daily. But let me tell you, it is just not the same.

How are we doing? Well, I think we seem to be doing alright. Not awful, not fabulous. Most days are okay. We stay busy, we do things a little differently. Sometimes it’s a lot different. We haven’t been able to settle into much of a routine yet, because we went on vacation, we were home for a week, and then it was Easter and Spring Break. Starting this week, that will change. School is back in session, sports are picking up, and we have a solid 5 weeks of the school year left. This coming week will be a big step for us.

All I can say is that we do the best we can each and every day. For me, sometimes it means I cry. A lot. Sometimes, I couldn’t produce tears if I tried. We all just miss him so very much, plain and simple. I long to sit on the couch and just talk with him, to catch up on all that’s been going on. To tell him about how wonderful everyone has been and how loved we are. How proud I am of the kids and how they are handling this new life of ours. Of course, I know he knows all this and is watching over us, but that isn’t always comforting when you want to physically see and touch him. I know in my research and talking to others that this feeling will never truly go away, so I’m doing my best to ride the waves and honor my emotions.

And for the kids? Well, they are amazing. They give me energy and the strength to want to be the best I can for them. We are all very honest with each other and try our best to respect each other’s feelings…and while we have plenty of ugly moments, I think we all have a good understanding of how important it is to let our feelings out and not be afraid to say what’s on our minds. We have so many signs that he sends us daily, and we’ve learned to embrace them and let each moment put a smile on our face, to know he is with us always. Whether it’s a song on the radio or the way the sunlight hits the room, we feel his presence. Just this morning, I even caught the dog with his head turned in a daze out the patio window. I walked over to see a cardinal right in the front of the tree pictured above…now, normally any bird he can see from our patio would cause him to go into super protective small dog status, unleashing his fury on the poor bird in our yard from inside the house. Instead, he just sat there, mesmerized with the same loving look he would give Tony, his BFF and favorite family member.

I’ve had many friends who have been encouraging me to write more. The truth is, I do enjoy writing. It’s therapeutic and helpful to put myself out there. But I also have trouble committing the time to it right now. So, I think I am jumping on the blog bandwagon again. I do want to blog more – if for anything, just to capture my emotions and journal this new path we are on. I’m not sure if that will mean I keep blogging here or if I will start a new site. I think about it often but have been too busy to actually do much about it. I guess what I’m trying to say is, if you’re still reading…stay tuned.

Finally, I cannot say enough to thank all of you, both near and far, for all of the enormous love, prayers and support throughout Tony’s diagnosis and following his death. We are continually overwhelmed (in a really good way) by all those who reach out to us to let us know they are here and praying for us.

With love and gratitude,

Jen

Saturday, June 18th

Hello there-

WordPress reminded me when I logged in that it has been 2 months since I’ve posted. I apologize for those who don’t see us on a regular basis and have been wondering how things are going. Thankfully, no news has been good news!

I’m happy to say that Tony’s latest MRI shows, once again, that everything is stable. Based on this, and the fact that he continues to have minimal side effects from his treatment, it was decided that he will continue on his current regimen. His next MRI will be in 90 days, unless his monthly blood work results give them reason to move it up.

When discussing the results, the oncologist referred to Tony’s tumors as ‘glacial’ – meaning that because they are slow moving, it will take time to start to seeing any significant changes to the tumor in his pancreas and the metastasis in his liver. So stability is a huge victory at each scan.

Overall, Tony continues to feel well on his current treatment. Some of the side effects are getting more apparent over time and is to be expected. He’s learned to listen to how he is feeling and take it easy when needed. He continues to manage things very well and with an attitude I would like to bottle and sell.

Here at home, summer is in full swing. School ended on June 3rd, and I was personally happy to close the books on a school year that had been life changing in so many ways for us. It’s not much of a lazy summer here, though. The kids are active morning, afternoon, and night with all the things they love to do – tennis lessons, golf lessons, summer theatre (both kids are going to be in Shrek Jr.), Little League, and fast pitch softball. It is a little crazy at times, but so far they are enjoying everything. Julia decided she wanted to try pitching and pitched her first inning this past week. She also had the team’s first triple this week. Joey’s first hit of the season brought an RBI, and both kids came home with a game ball the other night!

As we get ready to celebrate Father’s Day this weekend, it is a bittersweet reminder of how life has changed in such a short time. We all miss Tony’s dad so much, and we are still struggling without him here. The kids are excited to celebrate with Tony and couldn’t wait to give him one of his gifts this morning. We wish all of those celebrating this weekend a wonderful day!

We also continue to feel the blessings of all those around us who continue to keep Tony in their prayers – it is quite amazing to think about all the love that surrounds us. Thank you so much for thinking of us!

Love,

Jen

Early Father’s Day Present…they couldn’t wait!

Thursday, April 14th

Hello-

It’s been a long three months since we were told the January results were inconclusive. Today we met with the oncologist to hear the comparison between Tony’s January MRI and the one taken last week. I am happy to report that everything looks stable, with no progression! Additionally, all blood work and organ functions were all in normal ranges. Thankfully Tony will remain on his current treatment regimen and will have his next MRI in sixty days.

We have a huge sense of relief with today’s results and are looking forward to spring!

Lots of love to everyone,

Jen

Friday, April 8th

Hi everyone. As many of you know, Tony’s dad passed away unexpectedly on Tuesday, March 15th down in Naples, FL, where he and my mother-in-law have spent their winters for twenty years.

Our hearts are all still aching and honestly, this still all doesn’t seem real. Sadness and grief comes in such waves…you feel it for those around you – for Tony’s mom, for Tony, for my kids, for my brothers-in-law and sisters-in-law, for my nieces and nephews. And sometimes, you are so busy fielding the grief around you that you don’t think about grieving for yourself. The blog has been on my mind and has given me a place to share my feelings, so here I am.

A little history for those who may not know us as well. Eleven years ago, Tony and I decided to build the house we hoped to raise our family in. We chose to build right next door to Tony’s parents. I’ve often gotten a few looks and gasps when I tell people this (and comparisons to being a real life version of ‘Everybody Loves Raymond’), but in all honestly, I can say it was a great decision. When we built the house, Dad was our full-time onsite foreman who enjoyed grilling lunch for our builders. When the kids were born, he was always the first one over to hold the babies and the last one to give them up, usually begrudgingly. Even being right next door, Papa could never soak up enough time with his family. We would joke that you could be there all day, and when you’d go to leave, he’d still ask why you had to go.

My kids could never get enough of their Papa either. Whether it was putting the automatic top up and down twenty times on the convertible, walking around the yard picking up stones, racing remote control cars in the driveway together, making meatballs in the kitchen, or playing with toys in the den while Papa watched CNBC, it didn’t matter. I could go on and on forever. They loved being together and looked out for each other.

As for me, I got to spend a lot of time with Dad too. We’d sit outside in the afternoons while the kids played in the yard and talk about anything and everything. He also taught me, his non-Italian daughter-in-law, how to make meat sauce and Joey’s favorite, meatballs. I could joke around with him about how many pairs of slippers he would bring home before he could find the right pair (he’d always go back to his old pair), his dislike for anything with cilantro in it, or his ability to pick out the best produce at the store.

We are all doing the best we can, but it’s been hard. The kids are handling things well but could not be more different in how they are grieving. Julia bottles things up and doesn’t want to show too much emotion. She will talk and cry a little and then stop. She is angry that he was taken so unexpectedly and that she didn’t get to say goodbye. The best way to describe it is like a volcano that is going to erupt. We aren’t sure when it will happen, but it’s not going to be pretty. Joey’s emotions come on quickly and are hard to calm. He misses him so much and keeps saying that he doesn’t know how to be himself without Papa because Papa has always been a part of him. It is so difficult when you cannot fix something that hurts your children so deeply. I am always hoping and praying that my answers and advice are helping and not making things worse for them.

A lot of you have asked how Tony is doing health wise through all of this. He continues to feel fine on his current treatments. The week his dad passed away we did receive notice that his other tumor marker had dropped slightly, so they did not have to move up the MRI. That was a huge relief considering everything we were going through. This week Tony went for his scheduled MRI – we will not receive the results until next Thursday at his monthly appointment. We continue to pray that his current treatments are effective and that he can stay on the same regimen.

Throughout all of this, we continue to feel so blessed by all the love and support from everyone. I know I seem to say the same thing every time, but please know that we don’t take it for granted.

Love,

Jen

2010 – Enjoying a fall day in the yard.

Christmastime 2014 at the Grand Geneva

October 2015 – Grandparents Day at School.

Friday, March 11th

Hello everyone!

I know it’s been awhile since I’ve posted. February was a quick and busy month filled with lots of fun and ended with our family vacation. We spent 5 days on the Disney Dream followed by 3 days at the Disney Parks and got just back this past Monday.

When we booked our vacation back in July, we obviously had no idea how much we would look forward to going on this trip. It certainly didn’t disappoint…I’ll add some pictures at the end of the post. We had perfect weather the whole time and then came home to 3 days of unseasonably warm weather here. It was great!

Tony’s appointment with the oncologist was yesterday. Thankfully, all of his blood work and vitals look good. He continues to feel great with no substantial side effects to either of his treatments. He did manage to catch something viral (cough and sinuses) since we’ve come home this week and was advised to lay low and rest for a few days.

The next MRI is currently scheduled for April. Of the two tumor markers they take, one remains in normal range, but the other came back slightly elevated in February. The oncologist is not alarmed by this, as it can vary each reading. If it does come back further elevated after this week’s tests, they will likely move the MRI up a few weeks. We continue to pray that his current treatment is effective – while there are many different options available, he tolerates the Sutent so well. We will have a much clearer picture of how things are going after this next MRI.

The kids are busy as always. Basketball season ended in February, and since we got home on Monday, they have started their school bowling league, we registered for softball and baseball this spring, and even had play tryouts. After watching his sister on stage the last two years, Joey decided he wanted to give theater a whirl, so both kids tried out for the May production of The Lion King. Joey is a Prideland Animal, and Julia is Shenzi the Hyena. It will be a lot of fun to watch them on stage together and we are so proud of them both!

Someone stopped me yesterday and asked me how Tony was doing, and then wondered if I was getting tired of being asked. I can honestly say that I am not…knowing and feeling all the love and support we have from everyone is a huge comfort. I am still amazed at all the people who keep us in their thoughts and prayers.

I’ll be sure to update everyone if the MRI schedule changes, if not, I will probably post again next month.

Love,

Jen

YourPhoto_0064

Swimming with the Dolphins in Nassau…something we had never done before but what an awesome experience! We were able to dance, kiss, snorkel and boogie board with our new friend Bimany!

-7835415-Pier-25557_GPR

Our day at Castaway Cay.

PhotoPass_Visiting_Magic_Kingdom_Park_7621000196

At the Magic Kingdom on Friday.

Tuesday, January 26th

Hi everyone-

We heard from the oncologist’s office late yesterday afternoon. They decided that the results of the January CT Scan are inconclusive. It didn’t provide a clear enough picture to tell them what is happening in the liver. In order to have a better image of the liver, they have decided to switch from a CT Scan to an MRI. He will have the first MRI done tomorrow and will continue on his current treatment of Sutent for the next 60 days, at which point they will take another MRI to see how things are progressing.

We are happy that Tony can continue on the Sutent – he has tolerated it so well and his tumor marker numbers continue to stay in normal range versus the elevated levels they were at back in September. Those markers are what give the doctors confidence that the current treatments are working. If his markers elevate outside of normal ranges before the 60 day mark, he will have that second MRI done at 30 days.

It is frustrating to know that the January scan doesn’t tell us anything. Tomorrow’s MRI won’t really tell us anything either – you can’t compare CT results to the MRI. Therefore, tomorrow’s will be a baseline that they will use to compare the next MRI to and see how things are changing.

As we have any new information I will be sure to share it with everyone. Our next regularly scheduled appointment for blood work is the second week of February.

Love,

Jen

Tuesday, January 19th

We heard from the oncologist’s office this morning that the tumor board did not reach Tony’s case at their review yesterday. His case will now be presented at next Monday’s meeting instead and will continue on his same meds for the next week.

Obviously we were a little disappointed with hearing this. Waiting on news like this is never fun, but we still are sticking with the positives and are expecting to hear that the board concurs with the oncologist.

So, until next week, that’s all I’ve got. Theres really not a whole lot going on here – it’s too cold outside! The kids are happy to be back at school and are very excited start some new activities this week – Coding Club and a new session of Chess Club. They also finished up a two week J-Term at school – where they spend some time each afternoon in a special focused interest ‘class’ – Julia’s was knitting and Joey’s was Lego Storytelling.

I’ll make sure to update once we hear of the board’s decision next week. Stay warm!

Love,

Jen

January 14, 2016

Happy New Year! 2016 is off to a great start, which is exactly how 2015 ended. We had a wonderful Christmas and New Year’s and hope that you did too!

This was our week for scans and blood work, which we went for on Tuesday. Today, we met with the oncologist to review the results of everything.

Tony’s blood work all came back in normal ranges, including the white blood cell marker that they were concerned about last month. His blood pressure is back to normal ranges. His tumor markers (the blood work that indicates the hormone levels in the tumor, not tumor size) have also come down to normal ranges as well. Tony continues to tolerate the Sutent (oral chemotherapy) well and has very minimal side effects.

The CT Scan provides a conflicting result. The tumor in the pancreas has not changed in size but it is showing signs of calcification (hardening and dying.) What is presenting the conflict is one of the tumors in the liver. It is showing an increase in size but has become more rounded and appears to be filled with fluid. The oncologist explained to us that this could be one of two things – either the tumor has grown OR it could indicate that it has shrunk/died quickly and turned into a cyst. He seems to think it is the latter because the markers are down and he has seen it in some cases before. If it has ‘cysted’ – it has happened quickly, which would be encouraging and show that the Sutent is effective.

Where does this leave us? The oncologist is going to present Tony’s results to the tumor board on Monday. This means that 49 additional doctors will review the results of the scan to give input on what our next steps could be. The possible scenarios could be to continue on the current treatment and have an additional scan relatively soon (60 days or less) to see if there are other changes to the mass in the liver that has changed size. The other possibility is that they will stop the current treatment and move to another form of chemotherapy.

What we learned today is that once you stop using Sutent and switch to another form of chemotherapy, you cannot go back. So the decision to switch treatments is a big one. There are still a number of treatment options beyond Sutent, but for as well as Tony has tolerated it, we are praying that he is able to continue on it and that the next scan confirms no growth or spread of tumors. We should find out on Monday what the decision is.

We continue to feel so fortunate to have so many people storming heaven with prayers (as Tony’s mom puts it) – today’s results certainly show it. While we are faced with some uncertainty after today’s visit, we can’t help but look at the bigger picture and see how many things are pointing in the right direction.

I’ll be sure to update next week after we hear what the board has to say.

Love,

Jen