Has it been a Year?? Another update...

I cannot believe it's been almost a year to the day since my last post. It hasn't been an easy year, Larry continues to struggle with infections that land him in the hospital almost every month. The longest period of time that he has been out of the hospital is just shy of 2 months. The good news is once the antibiotics are given within days he is back to working and living his life. Early this year, we did find out that he did have 2 small tumors in his pelvic area and he was to start chemo therapy as soon as he kicked the infections. Well...the infections just wouldn't go away so he's been without chemo for over a year. We've spent the year monitoring the tumors...anxiously awaiting the CT scans that are done every time he's in the hospital. More on that... I first have to share what Lar's been up to...

This year he's been able to travel and spend time with family. In May he got out of the hospital to come down to St. Louis and watch the White Sox vs. Card series. Nathan was able to score great seats for both games. Although it definitely was not the outcome we had hoped for (it was a rebuilding year, right?!), we still had fun.

U2 is one of my brother's favorite bands. I took him for his 40th birthday to the show at Soldier's Field and then was able to score tickets for the May 4th show in St. Louis. Not just any tickets but a good friend hooked us up with a suite! Words cannot describe how great it was to share this concert with him!!

Larry watching U2 from the suite

A couple weeks later it was off to Northern California for Natalie Kate's (NK/sweet cheeks) high school graduation. Wine tasting, parties and lots of family time was just what the soul needed!

Nor Cal Dinner

On our way to the wineries (Lar, Abby & Nathan)

So as you can see Lar has been living with cancer and doing it well! He continues to work full-time and have a social life. The damn infection struck the week of Thanksgiving so he was unable to come to St. Louis with rest of the family, but he made the best in the hospital. Because that is what he does. He keeps living.

This month he started to have more pain in his tailbone area. Now for him to complain of pain is a BIG deal - he never complains! After the pain didn't go away with the infections, an MRI was ordered. We found out late last week that Larry's colon cancer has spread to his bone. He has a sizeable tumor on his tailbone that has been causing him pain. 

Sh*t!!!  F*CK!!!! god Damn it!! 

You name it we said it, thought it and maybe even screamed it! It was definitely not the news we ever wanted to hear. So now what? Radiation. Why not? It's the one treatment that he hasn't had to do in his 6 years of cancer life. We met with the radiation oncologist today and thank you to modern medicine! The doctor said he wants to be as aggressive as he can be due to my brother's age and overall health. Welcome to our team, Dr. Sean Sachdev! Every doctor related to my brother's cancer has had the same attitude-let's be aggressive! And my brother goes right along with them. I LOVE it! Next week my brother will go in to get a mold done of his backside along with a 3D MRI with multiple imagining. Lar will wear this mold for his 3 targeted radiation sessions. Dr. Sachdev feels that this will eliminate most of the tumor, relieve the pain he is feeling and put him in 'long term' remission. Now of course aggressive treatment can also come with risks. The only real side effect he should have with this type of targeted radiation is tiredness. That's nothing to Larry. The risks are a little more trickier. Anytime you radiate the spine there are risks of fractures, nerve damage and other things that we don't have to worry about when you don't have a colon and you have tubes functioning as kidneys. SCORE!

We feel so fortunate to have the absolute best doctors on our team. This new doctor has amazing bedside manner along with all the others on our team. We are also fortunate that Larry continues to have a positive attitude and continues to live life to the fullest. We're going to spend Christmas together, follow are life-long traditions like we always do and take things day to day.  Our family has a fun year ahead and in April, my brother has the biggest job of his life - he is walking me down the aisle.

So, thank you LRM Crew for continuing to support my brother and my family. Please continue to keep my brother in your prayers (if that is your thing), in your daily mediation (if that is your thing) and definitely in your thoughts.  We all need a little TLC right now.

I will update as Larry progresses with this radiation. 

Until then Happy Holidays and Happy New Year!

xo Laura

Sox it to it Lar...

LONG overdue Update

An update is LOOOONNNNNGGGG overdue....

Life happens. I apologize.

 

 

Let me recap for ya...

Larry's big surgery was June 5th - he left with no colon, a HIPEC was performed and all known tumors were removed. It was quite the surgery to say the least!



Since his surgery, he has been hospitalized 5 more times! His body has been trying to fight an infection that the doctors cannot figure out. Each time it goes a lil' like this...Larry starts getting the chills and spikes a fever of over 100, he has to go to the ER, they admit him, he gets strong antibiotics, doctors try and figure it out, and repeat. He still is sporting a catheter and every time the doctors try and take it out this happens. And sometimes when they don't this happens. When he was admitted yesterday for chills and a fever, they finally saw blockages in his kidneys that they think may be causing some of this. Not that I'm happy that he has kidney blockages, but at least we got some answers as to why this keeps happening. Late last night they went in and put 2 stints in to relieve the blockages. Today he will get an MRI and an upper CT to see if the doctors can see anything else.
Not only does he still have a catheter, but he also still has a drain that is draining an abscess. He has been so patient with all of this stuff hanging off of him, but his patience is wearing thin! Hopefully, the CT and MRI will give us more answers.
The GOOD News throughout this 6 month of ups and downs, is that his last CT scan showed NED (no evidence of Disease), his favorite 3 letters. This is amazing news since he has not been able to start chemo yet due to the three ring circus going on in his abdomen.

The LRM Crew's 5th annual Get Your Rear in Gear was a success! Not only was Larry able to walk the entire 5k but he spoke as a survivor! He was AMAZING! Take a look....

 

 

I'm so proud to call this guy my brother! It is so hard to accurately describe my brother to anyone who does not know him. His resiliency, his spirit, his grit, his everything is truly remarkable. He is one of a kind!

 

We're hoping to spend an uneventful Christmas all together. The best Christmas present would be to have an answer for these infections and an idea of when he can leave the catheter and drain behind him!

 

My family is so grateful for everyone that has joined us on this journey. Your support and kindness is overwhelming! We couldn't do it without you!

We hope you and your family have a great holiday and a Happy and HEALTHY 2018!

 

Sox it to it Lar....





Rain Delay

 

 

 

The ground crew has put the tarp on the infield, some players are taking cover in the locker room and others are using the tarp as a giant slip and slide while Larry is using this time to recover. To him it feels like the longest rain delay in the history of baseball!

 

Since his surgery on June 5th, Lar has put all of his energy into recovering from a brutal surgery. Recovery means he can start chemo. The major opponent keeping him from recovering has been infection. And with each new infection comes another hospital stay and another round of antibiotics. I am truly grateful that we have antibiotics to fend off these infections, don't get me wrong, however the side effects that they bring to a cancer patient are extremely frustrating. The biggest being appetite. It completely disappears. After having the HIPEC done during surgery, his appetite was already pretty non-existent, but then to add on heavy antibiotics, his appetite has been extinct! If a guy can't eat he does not have the strength to recover. And the vicious cycle continues....

This rain delay is taking place in a beautiful room with a view at Northwestern Hospital.

 



 

It looks like he will wake up to this view a couple more mornings, until all his tests results come back and the doctors feel confident they have the infection under control.

Larry was anxiously waiting to meet with Dr. Stein, the oncologist, on Friday to go over next steps with his treatment plan. Now that he is in the hospital, I am not sure this will happen. Just like any typical rain delay, the outcome is out of our control.

once the rain delay is over and we get word from the commish, I will update you all. In the meantime, please keep my brother in your thoughts and prayers (if that is your thing)....he is the strongest person I have ever met and it is so DAMN unfair that he has to go through this.

 

 Please join us..It would mean a lot to my family and especially my brother!

and if you can't join us please consider making a donation.

 

 SAVE THE DATE....

GET YOUR REAR IN GEAR 2017

 

 If you haven't already please sign up for the Get Your Rear in Gear 5k on Saturday, September 23rd at 9:00am at Montrose Harbor. Here is the link to sign up: SIGN UP HERE 

We have a great time, celebrating Lar and his journey. It would mean a great deal to him, my mom and me to see you there.

 

Sox it to it Lar...



Bumps in the Road

 

 

The last few weeks have been a bunch of Bumps in the Road for Larry. I guess that is to be expected when a guy gets his entire colon removed, tumors removed (in very complicated areas) and a last minute HIPEC. After being home for a week, Larry developed an infection and had urine leaking into his abdomen. As hard as his doctor tried to keep him out of the hospital, the infection proved to be too strong to fight without the help of round-the-clock care. While in the hospital, they got the infections (yep, more than one) under control with heavy IV antibiotics. He also had an abscess drained and another drain put in to stop the urine leakage. After another week in the hospital, he broke out feeling much better than when he went in. He is still trying to find his appetite and strength, but is feeling stronger each day. The next step is to get him healthy enough to start another round of chemo.

 

 





Lar breaking out of the hospital last week

 



 



 SAVE THE DATE....

GET YOUR REAR IN GEAR 2017

 

 If you haven't already please sign up for the Get Your Rear in Gear 5k on Saturday, September 23rd at 9:00am at Montrose Harbor. Here is the link to sign up: SIGN UP HERE 

We have a great time, celebrating Lar and his journey. It would mean a great deal to him, my mom and me to see you there.

 

Sox it to it Lar...

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 





Recovering AT HOME

 

 

 

Larry came home Sunday and is officially starting his recovery. Management of the pain and eating is his primary goal for the next few weeks. Once he is healed from surgery, another round of chemo is up next.

 

 

Sox it to it Lar...

5th Surgery is in the books

 

Larry's 5th surgery is in the books. It was the longest and the most complicated to date, but in true Larry fashion he is already sitting up and actually walked a little today.

Dr. Salti started at 10:30am and finished around 7:00pm. Here's all that was accomplished:

• Colon removal ✅
• 2 known tumor removal ✅ (with the help of a urologist)
• Ostomy ✅
• Explore the abdominal cavity and remove any tumors ✅
• HIPEC (heated chemo) ✅

 Larry definitely got the full service surgery. With the help of a Urologist Dr. Salti was able to remove the 2 tumors that were by the prostrate and the tailbone. They were causing him a lot of pain so good riddance!  If you remember the doctor was worried he wouldn't be able to get to the tumors, however once he decided to remove the colon it made it much easier. The two doctors felt it was NOT necessary to remove his prostrate, so he at least got to keep that organ!
The ostomy was a success and he was able to place it in a much better spot than his previous one. This will help greatly moving ahead while Larry gets used to shitting in a bag again.
Dr. Salti also did an extensive exploration throughout Larry's abdominal cavity making sure the cancer did not spread to any major organs. Colon cancer likes to spread and spread quickly. We are happy to report that there were no tumors on anything major (ie. liver, lung, etc.). He did find a couple tumors floating around so he removed those.
After Larry was all cleaned out, Dr. Salti went ahead and did another HIPEC. We were not expecting this, however Larry's body responded very well to the first one, so we welcomed the second one.
As you all can imagine it was a LOONNNGGG day. I don't know how surgeons do it...we were exhausted and all we did was sit and wait. We did have a little excitement while in the waiting room. Probably 2 hours into his surgery the lights went out. Literally the electricity went out at the hospital! Not what you want to happen when your loved one is in the operating room. I've never been more grateful for back-up generators! We asked Salti about it and he said that was the first time that has ever happened to him. 

So now what?!?! 

Larry will be in the hospital for maybe a week. As you can imagine his body is in complete shock with everything that was done. Salti did 3 surgeries in 1. Larry's pain is manageable but intense! It seems to be getting better each day. Today he even got up and walked! (Sometimes I think he is not human).
 After he gets released from the hospital he will recover at home for a couple more weeks. Once his doctors feel that he is healed and  his body can handle it, Dr. Stein will start chemo. The tumors that Dr. Salti took out were sent out to be tested. The lab will extract the mutation that is causing the cancer to grow and match it with the best chemo to fight the cancer. In some cases, the best chemo might be chemo that they use for a totally different cancer. THANK YOU to modern medicine and cancer funding!

Again, thank you to the LRM Crew and supporters for all of your positive thoughts, encouraging words, prayers and good vibes. You will never know how much we appreciate it and how much it keeps us going. Please keep them coming as Larry recovers!
As always, I will keep you posted on his recovery.

xoxo

Sox it to it Lar...

No Colon Still Rollin!!

 

Who needs a colon, anyway?! Apparently not my brother.

 

 

 

WOW! Time is such a weird concept when dealing with cancer. I felt like I just typed the previous post, but looking back its been over a month and a half.   

To refresh your memories, I broke the news to you in the last post that Larry's cancer had come back-they found two tumors outside of the colon. We were waiting for the team to meet to discuss next steps..blah blah blah... Well, in the meantime he had a colonoscopy done and they found two more 'spots' inside the colon that we now know are also tumors-one in the ascending colon and the other in the descending colon. DAMN YOU CANCER I HATE YOU! I just want to keep screaming that!
These tumors are quite sizeable and need to come out ASAP. Luckily Larry, had a surgery scheduled for Monday, June 5th already set to remove the other two. So, all the tumors will be removed, as well as, his entire colon! Yep, you read that right - as of Monday afternoon Larry will be colonless. His team of doctors feel this is the best course of action. DAMN YOU CANCER I HATE YOU!
He will sport another colostomy bag.... I don't want to say it will be permanent - there is a 5% chance that if he can go cancer-free for 3 years, they may be able to lift his small intestine and reconnect again, so for right now it is one of those 3 year temporary bags.
The tumors they remove will be sent out and studied to determine the type of chemo needed to fight this cancer FOR GOOD! After he recovers from this surgery he will start yet another round of targeted chemotherapy. DAMN YOU CANCER I HATE YOU!!

As always, keep Larry and my family in your thoughts and prayers. We really could use them right now. This is definitely not the news we were expecting. Like he always does, Larry is facing this news with bravery and optimism but let's face it this all really sucks! DAMN YOU CANCER I HATE YOU!

I will be driving up to Chicago tomorrow to spend some much needed quality time with my family this weekend and then staying for the surgery on Monday.
I will update you after the surgery.

xoxo

Sox it to it Lar....