March 30, 2023

Journal Entry by Mark Meyer — March 30, 2023

Earlier this week we began the process of building a second socket.  That's the part of the prosthetic that fits over your leg.  This is something that has to be done a few times during the first year following an amputation.  The leg changes size and shape as it heals and a new socket needs to be fitted to support the knee and foot work they way they should for you.  Not to mention that a poorly fitted socket hurts like hell to walk in.  The GOOD NEWS is we also started the process to build a third socket that will be use with a sports prosthetic thanks to all the generous donations!  If all goes as planned, it will be ready by May just in time for the start of boating season! 

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March 12, 2023

Journal Entry by Mark Meyer — March 12, 2023

4 clean scans, back at work, learning to use a prosthetic, 5 to 10 appointments a month with the scary one being the scan.  Someone wrote on a Facebook post to never give up.  They told the story of a 9 year old boy with an Osteosarcoma that had gone through the treatment and been cancer free for 5 years.  And then they found a recurrence in a lung.  This is about as scary as it gets when it gets into the lungs.  He had the tumor removed but was faced with this scary statistic that less than 15% survive following a recurrence.  Today that boy is 56 so never give up!  The 56 years is of course fantastic, but what we also heard is that even 60 clean scans in a row is not the same as "you are cured!"

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January 8, 2023

Journal Entry by Lotta meyer — January 8, 2023

And just like that it's 2023! 
Happy New Year, or a direct translation of what we say in Swedish,  we wish you a good continuation of the new year!

It's been several weeks since I posted the last update. My only excuse is, even though it's not that time consuming to sit down and write an update, it's very emotionally draining to sit down and process your thoughts before writing them down.  With Jarred being a young adult and not a child anymore, (even though he will always be our child) we are always careful and wonder what he thinks is ok for us to share about his situation.  We believe he is being very open and shares what he is going through with people who he feels are honestly interested.  He is strong and has been brave enough from day one to get out there and face strangers and their curiosity.

In my last post I wrote we were meeting with the oncologist the following day. That appointment was delayed a few day's due to severe storms and even tornado touch downs we had in this area. His doctor is so nice!  He called Jarred from his personal phone from the airport where he was stuck and apologized for not being able to make it.  His flight was canceled due to the storms in Dallas. 

Mark was in Sweden with work that week and the night before we had the appointment with the doctor, Jarred and Chloe attended Jarred's work Christmas party at a hotel in Dallas.  As part of the company party, they also got to spend the night at the hotel.  So I met them at the hospital the following day for the appointment. The goal of the appointment was to discuss and decide what treatment option if any Jarred would choose.  And to answer questions we had since our last visit.

Having Chloe at the visits is always great because she is full of questions that we didn't even know we also were wondering until she asks them. In Jarred's opinion, the rest of us probably have way too many questions but he allows them. Which we are very thankful for.  His doctor often turns to Jarred and asks "are you ok with me answering this?" being very respectful that Jarred is an adult and he makes the decisions.
Before the appointment, we already knew the PET scan and CT Jarred had the week before was clear since this doctor shares the results the same day with us.  Such a relief to not have to wait and worry!!
This was obviously great news and made for less choices for Jarred to decide between since it means there are no trials that Jarred would could qualify for.

So the options were: start oral Chemotherapy that is not a curative treatment but has some potential evidence of delaying and maybe preventing disease reoccurrence,  or just do nothing and continue to do monthly scans.  As with all chemo, it comes with some not so insignificant side effects.  How severe is always different from individual to individual.  Jarred decided to start the chemo pills at 6 weeks post amputation (to allow enough time for complete healing).  And if the side effects get too bad he can always change his mind. The pills are taken in 21 day cycles with a break of one week off the pills before restarting again. He started the first round on New Years Eve.  So far the most noticeable side effect seams to be fatigue. He has healed very nicely from his surgery.

The day he started the chemo, Jarred and Chloe returned from a quick trip to Colorado Springs to attend a memorial, celebration of life ceremony for one of his friends he shared a house with in Colorado Springs.  One of his friends that he shared a house with in Co Springs from before he got diagnosed with Osteosarcoma and had to move back to Texas. They drove up and back.  YES!!  Jarred is driving again without any problem. He drives using his left foot.

We celebrated a traditional Swedish Christmas on Christmas Eve as all true Swedes.  All three kids and their significant others here with us. Marks dad Ole and his wife Joey were supposed to be here with us, but the snowstorm that covered most of the country that week put a stop to their travel plans. Instead they joined us for a Zoom call when it was time for Jarred to open his first Christmas gift. 

He did not expect to get his prosthetic leg until the following Tuesday at his next appointment but the prosthetist called Mark a few days before Christmas and said he was done building it.  He had the fantastic idea we could surprise Jarred with it for Christmas.  So Mark went and picked it up and we wrapped it.  Normally they never hand out a leg without the patient trying it at the clinic first after it's done, but he said he had seen enough to know he trusted Jarred to try it on his own. 

This is Jarreds everyday walking leg that the insurance covers, still advanced but not a sports leg. In the beginning you can't just start using it all day long so you use it practicing short times a couple of times a day. Gradually build up how long you use it depending on how your leg tolerates it.

Jarred had his first visit with the physical therapist for an evaluation and is waiting to find out how often he will go for physical therapy after his rehab doctor reviews the evaluation. He has returned to work and they are being amazingly accommodating him with adjusting his duties and being flexible to the time he needs off for appointments.  I believe being able to go back to work and do normal stuff is huge for Jarred.

Mark and I believe very strongly that Jarred will be able to accomplish anything and everything he wants to with the right prosthetics, but he will need more than the "everyday walking leg" to do it.  What we are very concerned with is the cancer.  Osteosarcoma is a very aggresive cancer and has a very high reoccurrence rate. This is why he will continue monthly scans. 

Yesterday he had a scan that also was clear! 

December 12, 2022

Journal Entry by Lotta meyer — December 12, 2022

Jarred got his sutures removed last Wednesday and he is healing very nicely. There is no visible swelling. He has been wearing what is called a shrinker to eliminate swelling and help in shaping the stump for a good prostate fit. He continues to have very had nerve pain in his stump and phantom pain in the leg.

The last two weeks has been very busy with doctors appointments and tests collecting information and getting different opinions for treatment while he was healing. No treatment could have been started during the healing process anyway because that would interfere with the healing process.

We had a meeting with the oncologist that the head doctor at the osteosarcoma institute recommended we see. We really liked him. He took time to answer all of Jarred and our questions. He asked how Jarred wanted the information since everyone is different. Some wants to know only the necessary minimal info and others want to know every detail and numbers and statistics. Jarred said he wanted to get all the details. He probably spent over an hour and a half talking to us. 

Basically the summery is that the second he had a reoccurrence of the Osteosarcoma his statistical survival rate is less than 15%! 
There are no curative treatment that exists but there are treatments that delay disease progression. Both oral and IV chemotherapy. He talked about both options with us and then he even had a long conversation with Jarred about that there comes a time when it's time to think about if you want to continue treatment with its side effects or quality of life for the time you have left. 

First of all we needed more scans since it had been almost two months since the last PET scan (that they didn't inform us of the result of until 3 weeks after it was done!!!).
He immediately ordered the PET scan full body and a CT chest. The lungs are the most common place for Osteosarcoma to metastasis to first. And knowing if he had further visible spread yet is an important factor when deciding treatments. 
The day spread shows up on a scan anywhere else there are 4 possible trials for his age group in the world that he might or might not qualify for. All those studies are still at first and second stage trials. 

He had the scans and they were clear, no visible further spread at this time. Tomorrow we will meet the Oncologist again to discuss what treatment he recommends and what Jarred chooses. The doctor is at a conference today but will come straight in from the airport to only see Jarred tomorrow since he otherwise was of tomorrow traveling back from his conference. 

This week Jarred sees the Prosthetist three times. He is there now to get the casting mold of his stump done. They use that mold to make the socket for his leg. Tomorrow after seeing the oncologist he goes back and they told us he would be test walking on a leg tomorrow there at the clinic. Friday he should get to go home with a leg to take to Physical therapy to start working with. 
Insurance only pay for "one everyday leg". Jarred being the athlete he is will need several different legs for different activities. For example a more advanced sports leg for wake surfing and snowboarding. A leg like that costs about 100000 dollars. 
After getting the news about his statistical survival rate we feel an urgency to get him the leg he wants as soon as possible. He has a leg picked out that he say's he is already emotionally attached to. 

Many people ask what they can do to help. What we need the most is the company and support of knowing people are there for us and present in our lives.
We will soon get a fundraiser set up for his sports leg and other costs together with the Osteosarcoma institute where part of the donations will go to them. They are doing an amazing job supporting Osteosarcoma research and patients and families affected by this horrible disease.
So if any of you feel the need to donate and help out Please wait for that instead of spending your money on fast food gift cards etc. And remember that the Caring Bridge tributes/donations does not go to Jarred or Cancer research only to the people who run this web site platform. 

Jarred is handling all this better than I ever could imagine anyone dealing with it. I know it's not as easy for him as he makes it look infront of us. 
He he asked me if I can drive him to work on Wednesday because he is planning to go back to work. And on Thursday he and Jarred are planning to attend his company's Christmas party and stay over night at that hotel. 
So now I need to go drop off his shirt and suite at the dry cleaners.
 

December 02, 2022

Journal Entry by Mark Meyer — December 2, 2022

Jarred had his first post op visit and I think he got a little nauseous and faint seeing the stump. Heeling very nicely though. Stitches come out next Tuesday.  Then they can start to build his prosthetic leg.  We had a second opinion who suggested oral chemo therapy then also a conference call with the head of the Osteosarcoma institute (they don’t treat but know all research and trials going on etc. He is recommending a Dr here in Dallas at UTSW (He said no need to go to MD Anderson when this guy at UTSW is here in Dallas and he definitely thinks he may need iv chemo again. He sees a much more aggressive approach as the only alternative since most likely it’s already spread in his blood stream even though we can’t see it yet on scans. CT chest next week and seeing the Dr he recommended on Monday

November 25, 2022

Journal Entry by Mark Meyer — November 25, 2022

8 days post surgery, recovery is moving along nicely.  Still not sure reality has set in, but Jarred seems to be managing very well both physically and mentally.  Next week will be the beginning of the process to define what come next.  How has the leg healed?  When can they begin to build a prosthetic leg? When will he start to work with it?  What preventative care exists to keep the cancer from appearing again in another location? We will meet with the surgeon, a second oncologist, the head of the Osteosarcoma Institute, his physical therapy doctor, the therapist and the Prosthetist.  Lots to learn 

November 19, 2022

Journal Entry by Lotta meyer — November 19, 2022

Finally things have stabilized enough for me to take the time to write an update. FYI, when I started writing this I had no idea the update would end like this!

On the day of surgery when we got to see Jarred in PACU (recovery room) only one person was allowed back there. I went to see him and his pain was totally out of control. He was grasping the bedrails, gritting his teeth crawling out of his skin in pain. So my mom/nurse instincts got very demanding to get him more pain meds. Soon they had maxed out on everything they had ordered for him without getting the pain under control. Obviously I made them get the dr. on the phone and get more meds ordered. Finally the pain started to settle down some. Enough that he even asked for his phone, so I told him Chloe could come back with it and I would leave so she could see him. 
His pain quickly got out of control again and the PACU suddenly got very busy and understaffed.  Chloe said he was cut off from iv pain meds so he could be moved to the floor as soon as possible.

We met them up on the floor as he was being rolled into his room. Pain once again escalated and that whole day was a 9-10/10 pain day for him more or less. Finally we got him started on a PCA pump (it's a iv pain medication pump he could push a button and get a dose as often as he felts he needed it). 
Even with this and several different acting pain pills the pain was very intense. 
Chloe spent the night at the hospital with Jarred. We spent the night at some friends house that live really close to Baylor hospital in Dallas. We don't even know them very well (but they are the kind of people you feel like you really know even if you haven't really spent much time together). They had made the offer to us to use their house as a place during Jarred long chemo day's/weeks if we needed to go rest during the days at the hospital in the beginning of this cancer journey. The offer felt very sincere so we felt this was the time to take them up on their very generous offer since we didn't want to be very far away incase Jarred or Chloe needed us during the night. 

We got a very nice home cooked healthy meal and some well needed distraction after a very emotionally draining day and then a good night sleep. Jarred and Chloe did not get much rest due to the pain and being woken up the few times they fell asleep. Orthopedic nurse practitioner rounded early before we got there on Friday morning. We were lucky to run into her as we were getting off the elevator. She informed us Jarred and Chloe had decided that he was going to try to only take oral pain medications and not use the PCA pump so he would be able to be discharged that first day after surgery.

It didn't take long after we got there that he was in to much pain for that to happen. So he continued using the pump as often as it would allow him to get a dose and taking the oral (now increased dose) meds. Chloe drove home to our house to get some rest during the day. The whole day was pretty intense filled with pain and frustration. All this along with it being very drowsy from all the medications.

Jarred sister Nichole and Ryan came in the evening to visit with a nice goodie basket and his requested meal from Whataburger and of course... ballons.

Chloe returned for the night shift and we spent another night at our wonderful hostesses house. We woke up to the amazing smell of bacon and had a nice breakfast before returning to the hospital. We did not know what to expect and was worried it would be another rough day. As we enter the room we are happily surprised that Jarred was alert and in great spirit and with pain under control.  They had restarted him on his ADHD medication and I truly believed this was huge in getting him to be able to manage his pain and take charge of his situation. We were informed it was very unlikely they would be able to discharge him today since he had not been cleared by physical therapy or occupational therapy and others. Jarred was very persuasive and did not give up. He had stopped using the pain pump at 2 am.  And he showed them all he could walk easily with the forearm crutches and do stairs and all exercises PT showed him. He demanded a phone call with the surgeons NP that would make the decision to discharge him or not and convinced him. By 4pm we were on our way home.  While he was making plans to visit people.

After we got home he even went together with Chloe to the pharmacy to pick up all his prescriptions!!!!!

SUPER HUMAN  or what!!??

Our plan of him using our downstairs master bedroom for a while was also not needed as he decided his upstairs room was just fine.

We are blown away impressed with the strength and bravery he is showing. We have no doubt he will achieve amazing things but are well aware it's much harder than he made it look today.

Thank you everyone who messaged us and checked in and sorry if we didn't have time or energy at that moment to answer.

We  couldn't do this on our own. We are not as strong as our son.

Lotta and Mark 

November 17, 2022

Journal Entry by Lotta meyer — November 17, 2022

Surgery just finished. We spoke to surgeon who was happy with how the surgery went technically. He was happy with the amount/length of stump he was able to leave. This will help with the prosthesis fitting better.  Jarred is in PACU now we are waiting to get the call we can see him. 

 

 

Please if you feel like helping w donations don’t do it here on caring bridge since that does not go towards Osteosarcoma research. The osteosarcoma institute is our preferred place to support. We are planning on setting up a fundraiser for the osteosarcoma institute in Jarred’s name as soon as we have the energy to do that. 

November 16, 2022

Journal Entry by Mark Meyer — November 16, 2022

Pathology confirmed cancer so the surgery is now confirmed for tomorrow morning (Thursday).  We arrive at 5am and it’s scheduled for 7am.  He stays overnight or until the pain is managed.

November 15, 2022

Journal Entry by Mark Meyer — November 15, 2022

Busy week.  Diagnosis Monday, MRI Tuesday, meet with Surgeon Wednesday, biopsy Thursday, meet with rehabilitation Friday and then it was Monday again with Surgery targeted for Thursday.

 

Yesterday (Monday) we met with a prosthetist.  The guy that will build Jarred a new leg. It was actually fascinating.  He is a cool young guy that works with lots of people but also with top athletes.  Some of the things he can do, and they can do, are amazing.  Six Million dollar man and bionic stuff.  They actually hand make much of the legs there at their shop.  Pretty high-tech with carbon fiber, high grade metals, molding plastics and inserted micro chips to drive them.  It’s up to Jarred how far he wants to go, but there are really no limits. Surfing, wakeboarding, snowboarding, swimming, climbing, cycling….. it’s just a matter of the right components and putting in the work to learn.  

 

But make no mistake,  we are still in shock and there is a lot of work to be done.  The phrase, “you have to walk before you can run” comes to mind.

 

I wanted to share something special a good friend said to us yesterday.  She said she had  wondered how she would look at Jarred after his surgery.   And then, with a tear in her eye she said she realized to her he would still and always just be Jarred.  What a wonderful thought.

November 10, 2022

Journal Entry by Mark Meyer — November 10, 2022

Well, we thought this nightmare was over.  We finished chemo in June and everything looked good.  4 months later his PET scan shows he has had a reoccurrence in the area of the original tumor.  The rest of the PET scan showed no sign of cancer, so the focus is to address the cancer in his leg.  The only course of action available is to remove the area of disease.  A biopsy today confirmed what we already knew.  He will have his right leg amputated at about mid thigh next week.  If we do this, his oncologist says his long term prognosis is the same as it was prior to this reoccurrence.  Easy to say, but you lose a leg in the process.

 

Jarred is being very factual and focusing on the process.  It has not been easy living with a partially paralyzed foot and severe nerve damage the past year.  Somehow I believe this helps deal with what now has to be done.  I’m not saying it’s easy, but it has surely been on his mine a long time and when he was told, he was not surprised.

 

There is no plan right now for any other treatment or chemo following the amputation.  Chemo has already done (or not done) what it could.  That said, we will seek input from others, second opinions and talk to the people at the Osteosarcoma Institute.

July 22, 2021

Journal Entry by Mark Meyer — July 22, 2021

Foot drop brace. Not quite 45 degrees. Got some work to do 

We have now had follow-ups with Mollabashy (Ortho), Nadler (Chemo) and Ha (Nerve).  Recovery  is moving along slow but in the right direction.  Chemo will restart on Aug 3rd and we will get a full body scan on Aug 2.  Hopefully all clear. 

Today was the follow-up on the nerve graft.  The nerve resection was 8cm long so we should expect 80 days for the nerve regrowth.  It seems  there are two steps.  First you graft in the new tissue, and then it reconnects allow the tissue at a rate of about a millimeter a day.  As he reaches the 80th day (should be about about September 24th) two things will start to happen.  1) he will get feeling/tingling from the short branch of the nerve and movement/twinges from the long branch.  There is no way to know how much feeling and movement will return, but things look promising.  We will follow-up with Dr. Ha on Sept 30th.

His knee needs to remain stationary for the full 4 weeks.  So about two weeks to go.   After that he can remove the brace.  If you do the  math, that means he can remove it on Aug 3rd.  (yes, chemo day)  It’s up to Mollabashy (Ortho) after that how much movement and weight he can put on it.  First step is to work on manual movement of the ankle.  He needs to use a drop foot brace to get his ankle back to a 45 degree angle.  That will take some work and wont be very comfortable to say the least.

July 9, 2021

Journal Entry by Lotta meyer — July 9, 2021

Jarred had the nerve grafting surgery this past Tuesday. They took parts of a sensory nerv from the back in his calf so now there are some areas of the foot he has no feeling in. Sewed it to the nerve stumps where the other nerve was removed in order to remove the tumor during last surgery. Reconstructed two major nerve paths to the foot. The grafted nerves are about 10 cm long. He is in a complete straight leg knee immobilizer for 4 weeks to avoid any pulling on the nerves. The pain after this surgery can’t even be compared to the last surgery. He has these feelings like he stuck a fork in the electrical outlet and he is being electrocuted. In recovery after surgery they couldn’t get his pain under and he kept shaking like going in to a seizure from the pain so finally instead they moved him to the ICU instead of the regular floor where he was planned to go. He is home now and we are trying to manage the pain with pills only now. He still had several iv painmeds plus the pills in his system at discharge so we managed to get him him in a borrowed car with a bench seat in the back. Since being home he won’t more because of the pain. Convinced him right before bedtime that he needed to just stand up for a second and maybe hop a couple of steps on the crutches to get some blood flowing to prevent blood clots.  This ended in complete disastrous nerve pain spasms as soon as he lowered his leg of the bed. Not sure when we will convince him to  attempt any movement again. It was brutal!  “PT session 1”out of many to come.  We will hope when the time comes the thought of a bedpan will be motivation to attempt to get out of bed again. Several of his friends stopped by for a surprise visit for awhile after he got home. Nice distraction for a while. But also exhausting for him. But well worth it. 

Chemo was scheduled to restart next week on July 14th but surgeon want no chemo for 4-6 weeks for healing of nerves. Not sure this is doable since he already has been of chemo since May 21 for all the different surgeries. We will find out on the 14th what compromise the medical oncologist and plastic surgeon will agree on. It’s been so long since last round that he has grown a full head of very blond soft peach fuzz hair by now. 

He has a follow up with plastic surgeon who did the nerve grafting on Tuesday the 13th and then oncologist the day after. So somehow before the we got to be able to get him out of bed. Was hoping to be able to show some very interesting photos from the surgeon from surgery but haven’t got them yet. 

June 30, 2021

Journal Entry by Mark Meyer — June 30, 2021

Sorry for the delay, but we kept getting partial information from each of the 3 doctors that was hard to put together.  So here is the update and it is to be seen as good news.  We had our follow up with the Orthopedic Oncologist that performed the surgery to remove the tumor and surrounding tissue for good margin.  He again said it went very well.  Only minor repairs needed for the ligaments.  Jarred had healed so well he asked if Jarred was a salamander.  Jarred left with only a boot and a pretty good looking healed scar.  

 

Unfortunately he didn’t have the pathology report yet.  Meaning we still didn’t know if the chemo was working or not.  That was Monday and our next appointment was for today Wednesday with the Medical Oncologist.  I chased the lab and got the pathology report faxed to the Med Oncologist while Jarred and Lotta were on the way there.  He got it just in time.  Basically it said the chemo is working.  There were a lot of numbers that we don’t really understand, but the bottom line is it is doing it’s job.  That said,  this is one of the most aggressive and difficult cancers to fight.  No other cancer calls for as long a chemo battle at this intensity.  He did 4 rounds in 21 day cycles before the surgery and in a few weeks he will start 12 additional rounds.  (Yes, that’s chemo for 252 days. Which is a little less than I understood before - still).  The pathology also said the margins (the tissue surrounding the tumor) were clean - no sign of cancer.

 

I said there were 3 doctors.  The 3rd is the one that will do the surgery to repair the nerve that had to be cut to remove the tumor.  Surgery is on Tuesday and we needed a good pathology report to secure it could happen.  It’s all last minute but I think it’s gonna happen.  It’s important it does to give the nerve graft the best chance of success.  He will spend the night at the hospital following the surgery just like last week.

 

On a final note, he also did lab work today.  There is some concern around the numbers associated with liver function but we don’t know why, so that will need to be watched.

June 18, 2021

Journal Entry by Lotta meyer — June 18, 2021

Jarred’s surgery to remove the tumor is done. Surgery went well. Surgeon tried to save the nerves to the foot but at the end it wasn’t possible. If pathology comes back with clean margins (in about 10 days) the Plastic surgeon who will do the nerve grafting will do that then. That Preliminary surgery date is July 7th. 
He is staying overnight in the hospital for pain control etc. Thankfully they recently lifted the restriction on visitors and now let one person stay here.

We were very happy that Jarred and Chloe was able to squeeze in a celebration of their 1 year anniversary with a fancy dinner out and a hotel stay between last surgery on the 10th and this one. Since now there is a long road ahead with more surgery, rehab and 15-17 more rounds of chemo every 21 days.

June 10, 2021

Journal Entry by Lotta meyer — June 10, 2021

Today is Jarred and Chloe's one year anniversary! Wish it would have been a happy anniversary day instead of how it turned out.
They did have big plans but since Jarreds chest port decided to come out through the skin Jarred had surgery today. They removed the "old" (more like 3.5 month new) port after putting in a new one of the same exact kind on the other side of his chest. It's not a big surgery but it took them 2.5 hours. He is way too thin for that double port that he needs for the different kinds of chemo.
After he got home he was in extreme pain. He can't move either arm or his head and neck due to the pain.
I Was able to call his oncologist and get a prescription for pain meds but then they made him sick. It makes for a very rough day when you get sick without being able to move your arms and being afraid of the new port being pushed out through the fresh painful incision when vomiting.  
Hopefully tomorrow and the next few day's will be easier so that they can have their rescheduled anniversary plans before next Friday. That's when Jarred's leg surgery to remove the tumor is. 
The plan is now (different from what we were told two day's ago) is that they will close his incision while waiting for the pathology report to come back in 7-10 day's after surgery. Then if it shows clean margins the Plastic surgeon who will do the nerve reconstructing/grafting will go back in and do that so that Jarred then can restart the every 21 day, 4 day chemo rounds. 

Thank you to everyone who checks in on us it means a lot. 

June 8, 2021

Journal Entry by Lotta meyer — June 8, 2021

Jarred upper port is now completely outside his chest. We saw oncologist today. He has only seen this very few times during his 18 years as an oncologist. It needs to be removed as soon as possible to prevent infection to his blood stream. So instead of Jarred and Chloes spending their 1 year anniversary date as planned at a nice hotel downtown Dallas Jarred will have surgery Thursday morning to remove it and have another one placed. Most likely in the other side of his chest. 

The tumor removal surgery is scheduled for the 18th of June. 5:30 am arrival time and surgeon told us he dedicated that day to Jarreds surgery only. We found out today that from the medical oncologist that they will not close the incision that day. It will be left open until pathology comes back about ten day's later ensuring clean margins. If pathology comes back ok then the plastic surgeon will work on the nerve grafting and close him up at that time. We have a telemedicine visit with orthopedic oncologist surgeon tomorrow to answer some questions we have about this. We will know more about the leg surgery after talking to him tomorrow. 

June 06, 2021

Journal Entry by Mark Meyer — June 6, 2021

Well, the port died yesterday (meaning that it broke through the skin), so we had to head in to the urgent care center and have him checked out.  No life threatening situation, but there went his summer water plans.  We were hoping it would make it to surgery the 18th.  That way he could surf and have some fun before.  Cancel that, he can’t get it wet now. At least not with our less than sterile lake water.  As for surgery, the final final date is not set, but we have a few appointments this week that should nail it down.

May 24, 2021

Journal Entry by Lotta meyer — May 24, 2021

Today we had an appointment with the orthopedic Oncologist and reviewed the MRI Jarred had off his right leg on Friday after he finished his 4th round of chemo.  We have only meet with him once before. That was the day Jarred came back from Colorado and before Jarred started chemo.  At that time he talked to us about how his goal was to not cause any damage to the Peroneal nerve that controls the foot movements when it was time for Jarred's next surgery.  

After he reviewed the MRI images today he told us there was a not insignificant growth of the "tumor". Last image was not to long after the tumor was removed and the bone filled with bone graft so it's hard to make an exact comparison though. In order to remove enough of the tumor with 2 mm margins he now has to sacrifice the nerve completely and also remove some of the Tibia (the other bone in the lower leg). They also cut the tendon in the knee and repair it. He played out three scenarios/options for us.

 #1: Try to graft a nerve at the time of surgery. Done by a different surgeon specializing in this. This option he did not recommend due to the increased risk of spreading cancer cells.

#2: Have that other surgeon create a space "tunnel" for a future nerve graft. Less risk of spreading tumor cells but still leaving the option for a future nerve reconstruction graft surgery to regain control of the foot.

#3: Do nothing about the nerve.  having to use a foot ankle brace always in the future.

We decided we want to talk to the nerve surgeon and are leaning towards  option #2. 

Jarreds port in his chest (where they give him the chemo) is very very close to the surface and almost about to come through the skin since he is so thin and it has shifted position. So we also agreed he would have a third surgeon present at the time of the surgery  that can replace his double port at the same time. 

Surgery will be the week of the 7th. Probable Friday that week, but we are not sure since three Surgeons need to coordinate their schedule. 

Obviously this was not the news we were hoping for and hard to accept.  One day at a time...

May 21, 2021

Journal Entry by Mark Meyer — May 21, 2021

Round 4 done and disconnected.  MRI done and set for Monday review with the Orthopedic Oncologist.  One minor glitch (or major if you just did 4 days of chemo).  Jarred gets a digital on body injector for the evening of day 5 so he doesn’t have to drive to the Cancer Center for the meds.  Well, it can’t go through the MRI machine, so we had a bit of a panic last night when it hit us.  After a few calls we just took it off so we wouldn’t have to cancel the MRI and Monday meeting.  That’s fine except now today he had to go back to the Cancer Center for an injection following the MRI. Not so fun when your about to toss your cookies the whole time.  Hopefully a quiet weekend ahead.

 

Big thanks to those who keep bringing that anti nausea med!  You know who you are!

 

Also, just to clarify.  Tributes on this site go to the CareingBridge to run their site and not to Jarred.  Much appreciated for sure, but want to make sure you are aware.

May 17, 2021

Journal Entry by Mark Meyer — May 17, 2021

Round 4 and the end of Phase 1

 

So much information today I couldn’t possibly write it all down,  but here comes the basics

 

Phases:

Phase 1: kill the cancer (4 rounds chemo)

     Check!  Well, done this week 

Phase 2: remove the bone

     Evaluate percent live vs dead cancer cells

Phase 3: sterilization (16 rounds chemo!)

     So that’s a year of getting chemo very 21 days!  That would take us to summer 2022.  And yes we are in a bit of shock

Phase 4: maintenance (reg 3, 6 & 9 monthly  scans and labs)

     For the rest of your life...

 

Upcoming schedule:

The dates with ? Are my guess.  But it gives you an idea of the journey ahead.

 

May 17th: Labs / Chemo (today)

May 18th: Chemo

May 19th: Chemo

May 20th: end Chemo

May 21th: MRI

May 24th: Ortho Oncologist 

May 27th: Labs

June 8th: Med Oncologist 

June 10th?: Surgery 

June 28th?: bone report 

July 7th?: Labs / Chemo 

Chemo every 21 days x 15-17 rounds! (End July 2022!)

 

Remember when I said what we need most is moral support?  Well, all moral support welcome!  A text message, a phone call, a visit... these are all great ways to help us process and keep the energy up.  Best when spread out over the journey.  We are 5 months into this journey and have a long way to go.

May 09, 2021

Journal Entry by Mark Meyer — May 9, 2021

Well it’s been 17 days since the last update and it has been a frustrating period proving once again that the patient (and family) have to take the lead on keeping the medical system on track.  Everything was planned and arranged for the 4th round, the follow-up testing, the meeting with orthopedic surgeon and a target date for surgery.  However we didn’t have the actual times for the 4 days of round 4 of chemo.  They don’t actually schedule them automatically so you have to call and get them.  Calling means you call the operator who takes a note to have a scheduler call you.  If you miss that call they leave a message for you to call.  That means you call the operator that takes a note to have the scheduler call you... and around you go.  We spent some time doing this and finally told Jarred to go sit with them on a visit during chemo.  This finally happened, but the scheduler had a hard time booking the right days so wanted to delay his chemo a week.  Jarred correctly told the scheduler that this wouldn’t work, he needed to follow the plan according to his doctors and already had imaging  and surgery scheduled.  The scheduler (notice I am not saying doctor or nurse), the scheduler made a call to an unknown source and came to the conclusion that in that case he could skip chemo all together and come back in June after surgery!  When Jarred informed us, we were back on the phone again immediately.  And the circus began again - operator - scheduler - operator...

 

New strategy, skip the scheduler!  Make a call to the nurse to talk to the doctor.  Of course this means call the operator and have them write a note to the nurse to call you and hope you can pick up.  I forgot to mention two things.  First, call back means sometime the same or next day...  Second,  no matter how often you tell them which number to call, they call whatever pops up. So if I call they might try Lotta at work or if Lotta calls, they might call me or Jarred.  Mostly, no matter what, they try Lottas number which is not always good since she might be with a patient at her work.

 

Back to the story.  We get the nurse and she says this is all wrong and will fix it.  He can’t wait until June. (Which means a scheduler took a decision they did not have the right to take).  

 

Silence.......  operator - nurse - operator - nurse... silence

 

So we are frustrated and time is ticking.  Turns out Lotta has the private number to the Director of the cancer center because of a fiasco on our first visit connected to the winter storm of 2021 (which it will forever be known), but that’s another story not for today.  So she sends a text and BOOM we get an answer.  The Director commits to getting it resolved.  Not too long after, we got the times scheduled (a few days later than planned).  This time however, the Doctor actually picked up the phone and called so we could, as he put it, hear him say it was ok with him and would not hurt his treatment.

 

Then all we had to do was move all the other appointments with imaging, ortho, surgery...  back on track!

 

So, round 4 starts Monday the 17th,  imaging 21st, ortho on Monday 24th, surgery soon after.  This month is going to suck for Jarred (and all) but on the bright side, next week will be a feel good week for him.  Hopefully even some boating time.

 

Happy Mother’s Day to all you mothers out there.  We were feeling pretty lucky today with all our kids vaccinated and able to join us for a Mother’s Day brunch at our house.

April 21, 2021

Journal Entry by Lotta meyer — April 21, 2021

Today Jarred  starts round 3 of chemo.  Each round is 4 day's of 2 continuous infusion pumps and daily trips back for additional infusions. First day of each round we get to spend about 5-6 hours here and the other day's it's about 2.5-3 hrs.  His labs are still ok, just slightly anemic.  
His implanted double iv port is not look great and is painful. He didn't tell me and show me this until today as we were leaving to go to the hospital. His doctor does not think it's infected at this time but it has shifted and moved under the skin and since he is so thin we are worried it might come out through the skin. So we will be keeping a close watch on it and if it becomes even slightly more red he will start him on antibiotics right away.  He  just texted me and told me they are having a hard time accessing his port today since it has shifted position under the skin. 

Since last treatment round Jarred wasn't able to keep any fluids or food down for a week this time he will be getting "flooded" with extra iv fluids each of the four day's of chemo. Good news is that for the first time in months he is not having the pain in his leg that made it so hard for him to walk before. Hopefully this is a sign of the tumor responding to the chemo. 
So far the pattern has been that he feels ok for about 1.5 week before next treatment starts. He even managed to get his leg through the tight wetsuit and surf some with Chloe and  friends during his week of feeling ok. During the time he feels ok in-between treatments his focus needs to be on take in as much calories as possible and gain as much weight as possible.

Another positive is that all 4 of us in our household have now had both our Covid vaccines. And Jarred's brother Marcus had the one dose vaccine so he is also done and sister Nichole has had her first shot, her boyfriend Ryan has had both his shots. We all still need to be extra careful and still mostly isolate or only meet people outside since if they think he has been exposed he won't be let in to the building for his treatments for at least 10 day's. So every person in our surrounding that gets vaccinated gives us hope of some day being able to have some social life again. 

The plan is that 3 weeks from today he starts round 4 and as soon as that round is done he has a new MRI and meet with the orthopedic oncologist and have surgery 6 weeks from today. Then continues the chemo like now every 3 weeks.
So far the pattern has been that he feels ok for about 1.5 week before next treatment starts. During that time his focus needs to be to take in as much calories as possible and gain as much weight as possible. 

We can't express enough how grateful we are for all the meals and gift cards and donations we have received via the meal train.  Since Jarreds appetite and eating schedule is not always in sync with ours he is getting some good use of those gift cards.

April 8, 2021

Journal Entry by Lotta meyer — April 8, 2021

Recovering from last round of chemo. 24 hours without vomiting but still not feeling great. No labs this week only a virtual visit. Labs next week then next round is planned to start the following week on Wednesday. 

April 03, 2021

Journal Entry by Mark Meyer — April 3, 2021

Today he got unhooked from the chemo and turned 20 in a very unusual way.  We set up a yard sign and had a caravan of friends drive through honking and yelling happy birthday.  Even had the fire department.  Some of the crew came all the way from Colorado just to be a part of it.  Grilled them all burgers before they headed back to the Rockies.  A tough day made a little better.  One of his crew even shaved his head in support of Jarred on the spot.

March 31, 2021

Journal Entry by Lotta meyer — March 31, 2021

Today Jarred starts his second round of Chemo. This time the dose is supposed to be increased since first time they went lower as a test dose to see how he would tolerate it. Today it's first Labs then he sees the oncologist and after that he gets hooked up to his pumps. They do a 90 min infusion here then he goes home with two pumps. Each day he has  to return to get a refill on one of them. On the fourth day he gets disconnected and get a small injector device placed in his stomach that will give him an injection the following day to help boost his white blood cell count. Saturday is his 20th birthday and probably the day he will be feeling the worst from the chemo.  Chemo and Covid Birthday!

The last two weeks his labs has been stable and at his last visit they were shocked he still had hair and told him his hair follicles must have super powers. The very next day his har started falling out. Two day's ago Chloe gave him a buzz cut. 

Saturday we took the boat out first time this year. Jarred got a few careful surf runs in but it was tough with his leg pain. There was no way he could push his leg through the wetsuit leg without severe pain feeling like his bone would snap off so he had to brave the cold water without a wetsuit. 

Yesterday he got his second Covid vaccination. So now we are just waiting  for Mark, Chloe  and Ryan to get their second doses and Nichole, Marcus and Abbi to start getting their shots. Can’t wait until we can get together for family weekend dinners again. 

This past weekend we were also very humbled and thankful as we received a very generous donation from a small local  organization of cancer survivors that help others going though cancer in the community.  The organization is called Pink soles in motion. I’ll post a picture of Jarred with the check.

March 16, 2021

Journal Entry by Lotta meyer — March 16, 2021

Jarred is feeling better today and able to eat and drink again after first round of Chemo that ended on the 13th. I really need to give a huge shout out to Chloe his girlfriend who’s been Jarred’s private 24 hour caregiver during this past week. 💕
Thank you also to everyone who has reached out and helped with meals and even donations. We are very moved by everyone’s support. 

March 12, 2021

Journal Entry by Lotta meyer — March 12, 2021

Chemo day 3.  24 more hours to go until he gets disconnected from his two pumps tomorrow. By now he is really feeling the effects. Feeling very sick, nauseous and fatigued.The 

“so called 30 min” daily visits  back to the Cancer Center for the refill on one of his chemo drugs is more like a 3 hour visit plus the drive downtown and back.  So that takes every bit of energy. 

As Jarred now becomes immune compromised we feel very lucky I got my second Covid vaccination yesterday. On Monday they lower the age limit to 50 year olds so Mark is getting his first shot on Monday.  Jarred had his first shot last week. Well worth the drive to Abilene (about a 5 hour round trip) that he had to do to get it. Mark will have about the same drive time to get his shot on Monday. 

March 10, 2021

Journal Entry by Lotta meyer — March 10, 2021

Today is the day that Jarred starts his chemo journey. He will be getting it in a pump for 4 days and also going back in each day for another chemo drug infusion.

We are very thankful  for  everyone who has reached out and want to help out with meals and other things. To help organize this our friend Tara Sappington created a meal train where friends can sign up if they wish to deliver a meal or donate.  As jarred  gets feeling the effects of the treatment more and more gift cards to smoothie factory or milkshakes might be his go to meal options. You can access the meal train from Jarred's caring bridge site by clicking on the "how to help" icon in the meny on top. There you will mind the meal train icon . 

Thanks you all! Very mixed emotions her today as we anxiously waiting for treatment to get started for what feel like forever, but now it's all going to get even more real. 

March 3, 2021

Journal Entry by Lotta meyer — March 3, 2021

Just a short update today. We did get confirmation Jarred does infact have another tumor in his other leg in the exact same spot as his right leg. All the dr’s tell us this is unheard of and this is so rare (like has never been reported before) they can’t believe it but it’s undeniably there. It does not change anything in the treatment plan for now. Just emphasizes the importance of getting the Chemo started.

February 26, 2021

Journal Entry by Lotta meyer — February 26, 2021

We are finally getting things scheduled and rolling. On Wednesday this week Jarred had a double port surgically implanted in his chest that they will use for the chemo. I will add some pictures of what the port is for those who don't know about ports.

The MRI he had on his other leg on the 12th the radiologist still have not been able to write a report on. They were closed the week after he had it done due to the severe weather here in Texas. Now  radiologist is requesting additional images. We have had this scheduled and rescheduled a handful of times this week. Jarred is there right now and hopefully today they can finally finish this study.

On the 5th of March we will have a virtual Chemo teaching class for all of us. Same day he will have an echo of his heart since one of the 4 chemo drugs they will use is very heart toxic. 

On the 9th of March a PET scan will be done.

The 10th Chemo starts after Labs and visit with his oncologist. He will have a 90 min infusion,  then go home with a pump for three day's. But each of those there day's he will need to go back for another chem drug infusion. On the 13th they stop the infusion and he get's a 21 day break before they repeat it again.  After 4 rounds there will be surgery again  and then they continue treatment. 

​

February 22, 2021

Journal Entry by Lotta meyer — February 22, 2021

The Texas freeze thawed and today was the first day most busnisses were back to open. We got a call early this morning and they got Jarred an appointment with the oncologist for his first visir this afternoon.

 He seams like a really good guy. The treatment plan is get a port implanted on Wednesday that they can give the Chemo through.  A Ultrasound of the heart since one of the four chemo drugs is hard on the heart.  PET scan (whole body) and More MRI images off his left leg.  As soon as insurance approves chemo and port and ultrasound is done he starts the Chemo. But no later than in two weeks though.

He was told he will loose his hair without a question. Each chemo round is a 3 day infusion with 21 day's in-between. Then they operate again to remove tumor and larger margins around it than they did at the first surgery when they thought it was benign. After surgery he continuous Chemo and he told him to plan for a years treatment.  

A funny side story is that the Dr. twice during last week tried to call us and found a Patient named Jared Meyer with the same birthdate as Jarred in the Baylor data base. He left long voice messages telling this other person about his cancer diagnosis until finally on the last try the person picked up at the end of his message and told him he does not have Cancer...

February 16, 2021

Journal Entry by Mark Meyer — February 16, 2021

Well the storm is putting us at higher risk one day at a time.  We should have seen the oncologist yesterday but due to the storm it was canceled and moved to today.  Although we got an automated message to confirm today’s appointment, when we arrived they were closed due to the winter weather and rolling blackouts.  I don’t mind the wasted drive, but the time is ticking for Jarred and it’s very frustrating.  We are now waiting for a new time.  At the moment we have power, but it will shut down again soon.  Crazy and frustrating.

February 14, 2021

Journal Entry by Lotta meyer — February 14, 2021

Texas is paralyzed due to the snowstorm and unusually cold temperature. So Imagining center got Jarred’s MRI done already Friday instead of tomorrow since they knew already they would be closed Monday.  We were supposed to have the first visit with the medical oncologist tomorrow but they called this afternoon and rescheduled for Tuesday (hoping weather/roads are better then).  So we keep waiting to get more information. Very bad timing for a Texas blizzard!

February 11, 2021

Journal Entry by Mark Meyer — February 11, 2021

Well, we are home.  13hour drive due to the uHall trailer and freezing rain.  Jarred got his bone scan and literally grab the disks on his way out the door to the loaded car and hit the road to Dallas.  We arrived 3am and were at the doctors 2:30pm.  CT showed some enlarged lymph nodes, but the doctor thinks they are normal following surgery.  The bone scan showed a similar issue with his left fibula but the doctor does not believe it’s the same. He ordered an MRI to be safe but called it a red herring.  The MRI is on Monday and we meet his recommended oncologist later the same day.  We will learn about what chemo and how long then.  We are all managing ok and are focused on getting this addressed

February 8, 2021

Journal Entry by Lotta meyer — February 8, 2021

Jarred thought he had injured his knee snowboarding. Turns out he has a large tumor in his proximal fibula. Since malignant tumors are so rare and Covid had surgeries backed up he had to wait almost a month for his surgery and biopsy. Eight days after surgery we got the biopsy reports that it’s a aggressive  Osteosarcoma. We drove up to Colorado the morning after we found out. He had a bunch of CT’s last week and tomorrow he is having a full body bone scan to look for metastasis and get a staging of his  cancer. Then we will move him and his girlfriend Chloe back to Dallas where he will start Chemo possibly radiation and have more surgery to remove the bone. 
We are all still in shock. It will be a long tough journey.  We ask for moral support and friends and family to help us through this.