Colin Strong Journey

EXTRA CANDY COLLECTION‼️ Please help 🎗️COLIN STRONG🎗️make the 5th Annual Candy Collection a huge success for our MILITARY‼️ Colin's grandparents, both Marines, have been right by his side each year. Sadly his Pop Boy earned his wings recently & is now our Angel. In light of this, we will be collecting at our home this year in his honor, Robert S. Swain, Sr. 🇺🇸

12 STABLE COURT
WILTON'S CORNER
SICKLERVILLE NJ
November 4th, 9 am - 12 pm
November 11th, 9 am - 12 pm
*If bad weather, we will be right inside the door & will run out.

As with previous years, if you need to stop by before or after these dates, just reach out to Kathi Swain Lawlor to set up a time. Thank you for making this another huge success!! 🎃🍬💝🍫

HAPPY 19th birthday to this amazingly strong warrior.🎉🎂🎈 Every single day is a blessing as you continue to battle this beast.

It's been a long time since I posted. Colin has had decent scans as the changes of the tumors is minimal which is a huge Yippee moment - at the same time, we are fully aware there is still movement which we don't like to see but we are taking it as a win. Still watching both tumors at this time. Colin had surgery on his nose to fix his deviated septum as a result of being hit in the face a few too many times leading up to finding the tumor. The surgeon also reduced the turbinates to help him breathe. While doing these procedures the surgeon saw he had broken his nose also. 🤦‍♀️ He is one tough cookie. He said it was a rough recovery but glad he did it as he is breathing much better.

Thank you for checking in on us even though I have been terrible about updating everyone. It means the world!! 💙❤️🎗️💪🏼

Amazing win at the Philadelphia Union as they raise awareness for Pediatric 🎗 Cancer. They are amazing with all the families. Special thanks to Simone for the tickets. Great way to spend my husbands birthday and our granddaughter's 1st game. Unfortunately Colin didn't make the game but stayed in touch with us. Please raise awareness to help fight this beast that is attacking our children.

Huge shout out to Gloucester Township Police for always being there for Colin. They showed up to surprise him for his birthday & graduation. Thank you for always thinking of him (and us). Your continued support means the world. - Kathi Swain Lawlor

To say that I am beyond proud of this kid is an understatement. Please take a couple minutes to hear the presentation from the Teacher's Choice Awards night. There were only 35 kids from the whole school tonight & they were all amazing but this one really shows who Colin is. ❤️💙🎗💪🏼 with Colin Lawlor Barbara Fagley Swain

💯 TRUTH 🎗💪🏼

UODATE: Colin had another MRI & Oncology visit. It was 3 months which is long for him. Usually do 2 month scans due them being "active". They tend to grow one way and shrink another. Always doing something. The last major change was when they doubled in size within 2 months and had another brain surgery quickly in May. Too unpredictable to really stretch it out. Oncologist measured herself. It appears to be a 2 mm growth but we will still take that as a win. She isn't anticipating much difference on the official reading. We are going to try 3 month scan again unless anything changes.

Colin had an extremely rough couple months. He has had nausea and 🤮 on most days. Lost some weight and very fatigued. Adjusted meds and he is finally doing a bit better. Through it all, he pushed to be in school. 💪🏼 On top of the cancer, he also had 2 more endoscopies for his EoE. Had more allergy testing done and the poor kid is allergic to so much. With everything else going on, they are going to give him a break on EoE procedures for awhile and try to treat with meds.

I'm behind on posting some things and will get caught up over the next few days now that things are settling down. I really appreciate the calls, texts, and dm's to check on Colin but also to check on the rest of us since I hadn't updated. This is a very long journey and I'm doing my best to keep things as "normal" as possible.

Colin truly is a warrior. As horrible as things have been over the last couple months, he hasn't complained. If you ask him, he's good. Me on the other hand, used hairspray instead of deodorant on my pits‼️ That was interesting.

You are all our strength and we thank you!! ❤️💙🙏🏼💪🏼

What an amazing day collecting candy for our Military‼️ A huge thank you to everyone that came & donated! Being able to partner with The Unforgotten Haven was a true blessing and we are very grateful. We filled 2 SUV's and a truck! Thank you to Marines Robert Swain, Barbara Swain, and Brett Ailtmar for helping Colin during the collection on a chilly day when Arianna couldn't be there. Colin Lawlor, you are truly amazing. 🇺🇸❤️🤍💙💪🏼

We are so grateful for your support and YES, there will be a 3rd Annual. Unfortunately I couldn't load the video of all the candy. Please enjoy some pictures we were able to take.

cc: Kathi Swain Lawlor

Crying right now! Colin & his sister Arianna started this Candy Collection for Active Military last year when there really wasn't a lot of volunteer opportunities. This year The Unforgotten Haven offered to partner with Colin (Arianna is at college). It is growing and absolutely amazing. Thanks to all who have donated already & to everyone coming on Saturday to support our Active Military including this huge donation from Dr. Amy James and Associates and The Griesey Spoon who collected for Colin Strong. No donation is too small. It all adds up!!

Looking forward to seeing everyone on Saturday across from The Unforgotten Haven at the new building from 9-12.

Now it's easier to send Colin Strong Journey a message.

Having a great time at the Flyers opening night. Thanks to Carol Dee Dee Clowry for inviting us to a great night! Getting out is great for the soul. 🏒 🥅

Celebrating a stable scan FINALLY‼️ Colin was out of school for 2 weeks with an upper respiratory infection thanks to his sister who was also battling one. It was pretty bad and they are both doing better. That was nothing compared to what it could have been. Getting him water ice at 2:30 am, 4:10 am, etc is a lot easier than the bells and whistles in the hospital.

Keep the prayers coming. ❤️💙🙏🏼💪🏼

NOTE: Some have texted so I want to clarify. Yes, the tumor is still there, in fact there are 2 of them and they are inoperable. However, they didn't change in the last 2 months.

Another MRI in the books. Colin had his MRI while his Neuro Oncologist was on vacation last week. She got in touch several hours after the MRI to give us the info and squeezed us in today for a f/u so that he can do remote visits for a bit during school. Incredibly caring.

Some great news!! The tumor shrunk - only millimeters, but still shrunk‼️ Yup, starting senior year without beginning treatment. Since the tumor is so rare & unpredictable, Colin has to have an MRI every 2 months. There is an also an "offspring" of the tumor which has been noted & they are watching it also. It is connected to the other tumor. Don't remember how she described it and she will be researching when it came to be. The tumor is inoperable as it is too dangerous. When the surgeon saw this piece he did not want to dig to get it. High risk of cerebellar mutism which is inability to walk, talk and even swallow and can be permanent. We are blessed to have such a skilled surgeon for Colin.

They continue to reiterate that the more he does with therapy, the more he will improve. Has to retrain the brain.

We cannot express enough how thankful we are for all the prayers and good vibes. This is a very long and uncertain battle but he will continue to battle the beast just as he has been. I truly believe that having his troops behind him has helped tremendously. Keep them coming. ❤️💙🙏🏼💪🏼

Happy birthday to this incredibly strong, amazing young man. Colin, you have been a sense of strength to so many people.

I want to thank Joseph Simone and David Ortiz "Big Papi" for this jersey for Colin. He received it while in the hospital recovering from another brain surgery. Tonight as we went to dinner, he wore it with a smile on his face. Colin, enjoy your day. I love you to the moon and back!! ❤️💙

Today - 2 years ago. A day that changed our lives forever. A day no parent ever wants to hear. No child should ever have to endure, or anyone for that matter. The day of surgery to remove a beast in Colin's brain. Diagnosis 7/13/2019, surgery 7/15/2019. There was 11 hrs of just waiting, so much of it a blur, seeing the surgeon's lips moving but only hearing the Peanuts "wah wah wah" and no actual words, still standing but everything is black and I cannot see. How was that even possible.....Thank goodness my brother and SIL were there to translate for me later. Colin's world changed but let me be clear, Colin has battled like a champion. Words cannot express how proud I am of this kid. Arianna captured it the best with her post below. These two are so incredibly close & it fills my heart. Her strength as the big sister has not wavered, in fact, it has made her stronger. I admire her and how she has stood with her brother through it all.

I apologize for not providing an update sooner but we still don't have an answer for Colin's protocol. Boston Children's tumor board are meeting about Colin on Friday. We should have a better picture after that so the 2 hospitals can confer. Right now we are working with CHOP to determine if we will be traveling to Boston for an in person visit. We love CHOP but everyone agrees we need more feedback since Colin's mutation is so rare that they call it his "personal mutation". Some of the best in world are reviewing his case between CHOP & Boston Children's and that is all we can ask.

I have several posts to get out of some awesome things but I am just behind. I promise you, I will share. In the meantime, send some extra prayers 🙏🏼 as the last few weeks have been tough on Colin and he has taken a few steps backwards. His doctors are on it and working on a game plan. More to come. Thank you all for your love and support. Your help is so appreciated.
💙❤️🙏🏼💪🏼

We need our troops to storm the heavens for our boy. Colin had his post surgery MRI on Friday night (2 months instead of 3). The piece of the tumor they couldn't get during resection is already growing.😢 I don't have all the details yet. His Neuro Oncologist contacted me Saturday. We have a couple appts Monday morning which are postponed at this point. The Tumor Board will be meeting on Wednesday to discuss his case. They are also contacting Boston Children's Tumor Board to discuss. The top 2 hospitals will review/discuss the game plan. Right now there are 2 treatment options on the table which we will be discussing as another surgery is not an option at this point. His oncologist will be reaching out soon to review more. We will then discuss the feedback of the 2 tumor board meetings. I will keep you all updated as we move forward. Colin is amazing & has fought so hard. He will continue to battle the beast with his troops standing with him. ❤️💙💪🏼🙏🏼

On a side note, I cannot thank you enough for continuing to check in with us. The calls, messages, meals, gift cards, help with the house, and invites all mean the world to us. We feel the love and cannot thank you enough. The inclusion means the world. Thank you!! ❤️❤️

UPDATE*****Venmo payment can be made through: -Murray-1313

HURRY***Deadline for Orders ends June 4th (next Friday) - ORDERS CAN BE SENT TO: JT2@CCC
If you have any questions, please reach out to: [email protected]
******
Colin’s father, John, was surprised by his fellow teachers and associates with a fundraiser in support of Colin. Please check out the flyer below for all the information, and ordering details. As always, Thank you!!
💪🏻💙COLINSTRONG

POST-OP — DAY 1 - 5/6/21

The surgeon is ordering an MRI of his spine. He wants to see if anything is there. Nothing urgent but needs to rule it out. He said probably Monday.

The tumor looks like the same tumor as before and not a different kind of tumor. If the tumor returns, chemo starts. Since Colin has his "own personal mutation", they are unsure how it will react. It will be a trial and error situation with the chemo.

He is currently in a lot of pain. He's on morphine, Va**um, Tylenol and some others to get him comfortable. He's still quite restless.

The goal is to get him to the oncology floor so it's a bit more settled and he's not woken up every hour or so. He still won't eat and not drinking much. We are trying to push the fluids the best we can. Neuro is not ready to move him from ICU yet.

His face is more swollen today but they expected that. It takes a couple of us to roll him over as we have to lift his head. He cannot lift it by himself. They are hoping in 3-4 days that he feels a little better.

We want to personally thank everyone for all the prayers as well as donations. My sister has been sending all the thank you's out as we have been quite crazy the last few weeks. Thank you again.

I'll send more info as it's available. ❤️💙🙏🏼💪🏼

Colin’s surgery updates throughout the day. Continued prayers needed, as this again will be quite a recovery journey
🙏💙💪🏻
They took him back at 7:43am. However, they had to do 2 iv's and a 3rd on his wrist. There is a lot of prep. A nurse was out here a little while ago and the "surgery" hasn't started yet. She said he has a lot of prep. He has been out. They used the mask to put him out and they used large iv in each arm to last longer. They were considering a central line but were successful with the 3 larger/longer iv's.” Prep started at 7:43am and surgery kicked off at 9:43am.

*2:00pm update
Latest update on Colin
Nurse just came out again. It's going to be AT LEAST another hour before he even goes to MRI.

4:17pm update:
Just got word he left surgery and went to MRI. That is about an hour. Surgeon gets a quick break to eat, and then discuss everything with radiology. Then either go back into surgery or to ICU. Extremely long day.

7:00pm update:
Surgery went as well as expected he is now in ICU and did not have to return for more surgery. He will be in there until he is released. Kathi and John are now in there with him ❤️❤️❤️❤️

9:00pm update:
Real brief as doctors and nurses are in and out and will be all night.
Thank you all for the support all day. It has been a very long day for all of us, but more so for Colin. The surgery went as well as expected without any complications. It was a long surgery since they had a lot of scar tissue to dissect around.

He tried to avoid the cerebellum the best he could to hopefully avoid a recurrence of severe PFS. We won't know for sure for a couple days how it has really affected him with walking and seeing. He won't open his eyes right now and the light hurts even with them closed. He is talking/mumbling which is better than nothing.

Unfortunately there "appears" to be a small piece of the tumor remaining that he couldn't get. I say "appears"because he just isn't sure. They will watch it closely again.

For now, just say some prayers tonight. He needs them for his recovery. I will update with more details tomorrow. He's in a lot of pain 😢 and we are exhausted mentally and physically and just want to sit by his side. ❤️💙🙏🏼💪🏼

Hockey Fights Cancer!! Family time before surgery. Thank you Carol Dee Dee Clowry!

A picture is worth a 1000 words. 😔
Original tumor which split the brain stem. His new tumor.

Thank you all for the thoughts and prayers as he Battles the Beast. ❤️

Venmo is ColinStrong14Lawlor

Colin Lawlor Journey Fund COLINSTRONG, organized by Kathleen Lawlor Colin’s journey began in the fall of 2019. He has already endured surgery, mont… Kathleen Lawlor needs your support for Colin Lawlor Journey Fund COLINSTRONG

Colin Strong Journey updated their website address.

As most of you all know, Colin’s brain cancer journey began in the spring of 2019. He has already endured surgery, months of rehab to relearn walking, talking, and eating. Colin had continued to get MRI’s every 3 months since his first diagnosis in 2019. Fast forward to Easter Monday of 2021 when he went for his routine MRI. Unfortunately, it wasn't the news that we wanted to hear. After speaking with the surgeon today, they're unsure the status of this new tumor. Once they have the biopsy from the surgery, that will take place next month, they will have a better understanding as to the road Colin will be traveling. His previous tumor was a pilocytic astrocytoma which is considered a slow growing low-grade tumor. The difference with Colin's tumor is he has a common gene known as a BRAF gene however his mutation is so rare that he is the only one with it! The oncologist called it "his own personal mutation", meaning they don't know of anyone else with it. They don't know anything about this mutation or how it will act or react. The surgeon is going to do a craniotomy & remove the tumor. He is unsure if the tumor has grown back as a higher grade more aggressive tumor or if the the new tumor is a different type of tumor which is more aggressive. If it returns again, he will need to start chemotherapy immediately. We are praying we don't have another 3 month stay. They don't know if he will suffer the severe PFS again and not be able to walk, talk & see. He will need more rehab either way. Please keep Colin in your prayers and share for more prayers. Colin is once again about to fight another monster no child should ever have to fight. ❤️

The family has continued to incur on-going medical expenses over the past 2-1/2 years, daily medicatiobs, etc., and to now head into round 2 of the complete unknown. Donations to help off-set some of these expenses are greatly appreciated, but definitely ask that you keep Colin and his family in your prayers.

A Venmo account has been setup under the following:


We are also currently working on creating a new gofundme link that will be posted here and shared as well. If you do not have Venmo, and/or would prefer not to donate through the gofundme, you can reach out to me through DM (Kelly Swain-Ailtmar)
Thank you!!
COLINSTRONG 💪🏻💙

https://www.gofundme.com/f/colin-lawlor-journey-fund-colinstrong

I don't even know where to begin. I guess I'll start from 3.5 months ago. Colin had his last MRI & it showed growth 1 way and shrinkage another way. I chalked that up as a positive and stayed hopeful. Oncology told us if we wanted to push out slightly the next MRI to 4 months we can but that's it. Once again listening to my mamma instincts I couldn't push it out to 4 months. I did give him another 2 weeks so I only extended slightly. Colin went for his MRI on Monday & our Oncology appt is Thursday. Our Oncologist called this morning to unfortunately let us know his tumor has DOUBLED in size in those 3.5 short months. Our Oncologist was already in touch with his Neurosurgeon to discuss options & timing. We will be going inpatient once again for surgery. I am at a complete loss, totally numb. I cannot even begin too imagine what is going through his mind right now. This tumor was "suppose" to be slow growing, it was "suppose" to NEVER come back!! We found out that none of that is accurate before we even left the hospital. Of course it is right in the middle of us selling their childhood home and finding something more manageable and affordable. I'm terrified for him but also not being here for Arianna & John. Colin is the strongest person I know. I don't have anymore information at this point. They are calling me back to discuss the timing. I am hoping we have a few weeks before he goes in so I can get us set up in the apartment we will be renting right now. I will provide more as I know more. Please say a few extra prayers for Colin and a couple for the rest of us to remain strong. He really does need his army right now. COLINSTRONG ❤️💙🙏🏼💪🏼

Hello All, yes I know. Am way behind on updates. However, ..... life. I just saw a post from another mamma that we got to know in the hospital. We actually shared a room for awhile on one of our trips to Rehab. It kinda hit home. See below.

""Hi everyone! Someone just sent me a note saying that she saw all that I was doing for my son and thought that I was amazing. It hit me so hard (in a good way). I realized that I’ve been feeling so inadequate recently because I just can’t seem to get it all done in a day and am always letting someone down. BUT we are dealing with cancer, PFS, AND Covid-19. Just the fact that we get up each day and keep going is amazing! I wanted to pass on the encouragement to this group because everyone in here is amazing and we don’t hear it often enough!""

This is so very true for me. On top of the cancer, PFS, and Covid, we are selling our home that we love, looking for a new home, remote learning, and dealing with college applications for my daughter. Talk about having your hands full. A lot of the mammas on the oncology pages understand what we are feeling. However, I really want to let you know how much I appreciate the calls, text msgs, GIF messages that you send and that you haven't forgotten us. We may be home from the hospital, but the journey continues. Sometimes the messages give me the strength to keep pushing. This is a very unusual time for everyone and we are blessed to have your support.

As for Colin, he is doing as well as to be expected. On the last MRI the new tumor shrunk in 1 direction but grew in another direction. I'll still take that as a win. It's still active so we just monitor symptoms until the next MRI. His balance and speech declined a bit lately but he's not doing as much as we would like due to covid. He has a day and sometimes several days where he struggles to eat, walk, talk, etc. We just have to adjust and take those days as they come. He has an incredible school with great teachers which is a bonus. We will continue this journey with Colin, staying strong, staying positive. ❤️💙🙏🏼💪🏼

2020 has been a year with lots of struggles for all. However, 2019 was was much harder for us. Hearing the words “brain cancer” sent shock waves through us. Colin, a kid that never stopped was about to go through a fight no child should ever endure. He played 4 sports year round. When not playing sports, he was on his bike for hours. Honor student, and all around great kid. Everything came to a screeching halt. After the surgeries, he suffered from PFS. This kid gave everything he had to rehab. He was determined to walk again and he did. He wasn’t expected to ever ride a bike again, and he did!! Colin NEVER complained about having his whole life taken away. Instead, he made the most of what he had and pushed on, knowing there was a light at the end of the tunnel. He didn’t complain, he had faith.

This year has been tough on a lot of people, including us. Colin, along with Arianna have found ways to give back and help brighten the days of others. They collected candy and care package items for the troops, helped to deliver toys to a nonprofit that assists those in need for Christmas and also collected a enough shoes to fill the truck a couple times for another nonprofit.

I am so proud of Colin and Arianna. Arianna is amazing and has been there every step of the way. Please say a few extra prayers this week as Colin has more scans next week. His new tumor has a mind of its own. We are praying for no growth. Thank you for your support and count your blessings each and every day. ❤️💙🙏🏼💪🏼

We would like to send a HUGE shout out to the Gloucester Twp Police Dept. Some of you know the backstory or our son battling brain cancer. Colin has always loved to just ride and ride. He took pride in his bikes and earned money to buy them which made it even more special. He was told he wouldn’t ride his bike again. He proved them wrong. He fought and continues to fight to ride. Unfortunately his favorite bike that he put a lot into and rode constantly was stolen. We filed a report and many community members were doing everything they could to find his bike and we are grateful to the community also. The love was amazing.

The GT police certainly went above and beyond. They donated their own money, ordered a bike, put the bike in quarantine for 14 days 😂, then surprised Colin.

This is the stuff you see on the news. However, they didn’t do this for recognition or attention. They did it because they CARE. I waited to post because I thought they might. Nope, that isn’t what it was about. We truly believe these men and women in blue serving our community deserve to be acknowledged. Thank you again for all you do for the community and to all who also reached out!!