Penny’s Battle

12/06/2025

I apologize for not providing an update sooner but life has been extremely difficult for our family. Penny passed away peacefully on Wednesday, December 3rd. We are all beyond heartbroken. Please keep our family in your thoughts and prayers as we try to navigate our new normal.

Below is Penny’s obituary (still tough to digest). We are having a memorial service for Penny on December 20th at 12pm at the Mountain View Chalet in Asbury, NJ. All are welcome to attend.

https://www.scarponifuneralhomes.com/obituary/Pen

Share memories & support the family

11/15/2025

Hospital/Chemo Update

Unfortunately things did not go as planned. I’ll warn you that this is going to be a tough post. Last weekend, Penny started having increased pain and oxygen issues and my gut told me something was wrong. So, I called Dr. Laurie’s office Sunday afternoon and they sent her to the ER with probable admission. Penny’s chest CT showed that her lower lobe tumor had continued to grow significantly and had increased to inches, that she had a small pleural effusion, and her spleen was enlarged. Her hemoglobin was also significantly lower than the previous Tuesday. Penny was admitted, morphine was added to her pain regimen, and the main goal at this point was to keep her comfortable.

On Monday night, we had a discussion with Dr. Laurie who informed us that due to Penny’s significantly declining condition, it was no longer safe to proceed with chemo as it would be too much strain on Penny’s heart and lungs. After a blood transfusion on Wednesday, Penny was discharged from the hospital and referred to hospice. We were and still are devastated. Penny has fought this beast for 5 1/2 years and to see her decline so quickly in such a short period of time with treatment not being an option is absolutely agonizing.

I have reached out to Dr. Sholler and the Hershey team to see if there is anything else they can think of to help Penny. They are currently reviewing all of the information but sadly I’m starting to lose hope.

Hospice met with Matt, Penny, and me on Thursday and the nurse came out again yesterday to check on Penny. We have not said much to Kaylee yet as we are waiting on hospice to help us with this process. Kaylee’s school is on alert and they are monitoring her closely. I know I’ve said this before but Penny is Kaylee’s best friend and favorite person in the whole world. Kaylee is going to be totally heartbroken. We aren’t sure how she will process all of this or how much she’ll comprehend but we’ll be watching her closely. I’m very worried about her.

As far as how Penny is doing, the best response is not great. Her pain is intense and she is on heavy pain meds, including morphine, throughout the day at home. She is having a lot of pain in her legs now and today she started to have a lot of difficulty navigating the stairs. Her bedroom is in our finished attic so we may need to rethink her location as time goes on. Penny is eating ok but sleeping a lot during the day.

We have noticed some neurological nuances (restlessness, confusion, doing or saying strange things, etc.) and it definitely seems to be worse at night (kind of like Alzheimer’s sundowning). For example, Penny has been walking up and down the stairs from her room to the bathroom in the middle of the night. She doesn’t remember it either. Last night, she woke us up at 3am because she had taken a shower and didn’t have a towel with her. She went back to her room and then came back downstairs 10 minutes later to use the bathroom again. Needless to say, Matt and I didn’t get much sleep.

Our family is still trying to digest what’s happening. Matt and I have no experience with any of this and we are definitely navigating uncharted waters. We are completely overwhelmed and exhausted and each day seems to bring a new challenge.

Hospice will continue to help us through the process and we’ll need to take things day by day. I’m not able to provide a timeline as those type of specifics have not yet been discussed.
My future updates may be delayed but I’ll try to provide another one before the end of November.

Thank you to those of you who have reached out, dropped off or sent gifts, and have been there for our family. We see you and we thank you. ❤️

11/07/2025

Update #2

I didn’t think I’d be updating again so soon, lol, but after a lengthy discussion with Penny’s oncologist late this afternoon, we have decided to proceed with inpatient chemo (ifosfamide) which was Option #2 on Hershey’s recommendations list. The olaparib pill will be added to the regimen but it’ll take 2-3 weeks to be approved and delivered by the specialty pharmacy. Based on Penny’s current declining condition, we didn’t want to wait that long for treatment to begin.

I won’t get into all the details regarding the decision process but Hershey’s option 1 was completely experimental and there is no data on the combination of the two drugs as it relates to treating osteosarcoma (no trials either). If we chose that, Penny would basically be on a clinical trial without actually being enrolled in a trial. Our oncologist was also concerned about unknown toxicity. The third option involved those two drugs combined with a second oral pill and again, interactions and toxicity combining all three are unknown. So, we decided on ifosfamode that has an overall successful osteosarcoma track record but Penny had been avoiding because it requires a port (she didn’t get her current port until April) and hospitalization.

We truly don’t know if this protocol will help but Dr. Laurie said she is “cautiously optimistic.” It’s going to be rough, though. The most common side effects are nausea/vomiting, low blood counts, neutropenia, and bladder issues. Penny will be admitted to Goryeb Children’s Hospital in Morristown (NJ) on Monday morning and most likely discharged on Saturday. She will also have a chest CT on Monday as a baseline.

This chemo involves 21 day cycles so after next week, if all goes well, she’ll have weekly visits for the following two weeks and then she’ll be admitted again the Monday after Thanksgiving. I believe the plan would be scans again before Christmas.

I’ll provide updates as she goes through treatment and I’ll let you all know how her body is handling it all.

11/07/2025

CT Update

Happy Friday! I have some good news and some not so good news. The good news is that Penny had her pelvic CT this week and there were no signs of osteosarcoma in her hip. So thankfully Penny’s cancer has not spread beyond her lungs. The not so good news is that after I posted my last update, Penny began experiencing pain in her lower back (where the growing tumor is located) and is now back on pain meds around the clock. Also, her oxygen levels have started to plummet so she is back on oxygen throughout the day. Yesterday at one point she became very disoriented and her oxygen level dropped to 84 so it was a little frightening. Additionally, Penny’s hemoglobin levels are steadily decreasing so this is being closely monitored as she will need another blood transfusion when it gets low enough.

We are all very frustrated to say the least. It seems we took one step forward only to take two steps backward as Penny is now back to where she was over the summer prior to starting the Hershey trial. We still have no set treatment plan. Late Wednesday, Hershey sent me the final tumor report with three different recommended treatment protocols. We now have to meet with Penny’s local oncologist to determine the best path forward. There is so much to consider and it won’t be an easy decision. I have researched all options and formed my thoughts and my opinion on where we should go from here so I’ll be sharing with Penny’s oncologist when we all meet with her. Penny is leaning on us as she prefers we make all decisions but we are hoping she will share her thoughts and feelings with Dr. Laurie when we meet with her. Penny has a good repoire with Dr. Laurie and the Valerie Cancer Center staff so we are thankful for that and all that they do for us. I reached out to Dr. Laurie yesterday so we are just waiting on that discussion to get the ball rolling.

I’ll provide another update after we meet with Dr. Laurie and have a treatment plan in place. In the meantime, we are going to try to have some family time this weekend and enjoy a Christmas on the Farm event tomorrow. I know it’s early but we don’t know what the future may bring so we are trying to get out and about while we can.

Have a great weekend everyone!

11/01/2025

PET Scan Update

Happy November! I wanted to provide a quick update as Penny had her PET scan on Thursday in Hershey and we met virtually with Dr. Sholler that evening to discuss results. Although Penny’s upper lobe tumors are stable, her bottom lobe tumor has doubled in size and has become very active. Also, there is a finding in her left hip so Penny will need additional testing to determine exactly what is going on there. This is not the news we were expecting.

As a result of the PET, Penny has been removed from the clinical trial and will resume treatment in NJ with her home base oncologist, Dr. Laurie. But, Dr. Sholler will remain a part of Penny’s care.

During Thursday’s meeting, Dr Sholler reviewed the tumor study report with us and the recommended treatment plan by the Tumor Board Committee. The suggested protocol is one IV chemo (Oxaliplatin) and one oral chemo (Olaparib). We don’t have all the specifics yet but I believe it’s a 28 day cycle and I can only assume that scans would occur after cycle 2. If this protocol doesn’t help, there is an option B that Penny can try.

Regarding how Penny is feeling, she is ok overall but coughs frequently, is experiencing shortness of breath, and is very tired. She was able to trick or treat with Kaylee yesterday but only lasted @30 minutes before she became winded and fatigued.

I’m hoping we have a plan in place by next week so we can figure out what is going on with Penny’s hip and start the next chemo protocol as soon as possible.

I’ll provide another update after we have more information!

10/12/2025

Tumor Board Update

As usual, life has been chaotic. After a last minute cancellation, our local cardiologist’s office (Kaylee’s current cardio office) was able to get Penny in to be seen this past Wednesday. The Dr. was super sharp and thorough and definitely impressed me with her knowledge. Her biggest concerns arose from the Doxorubycin chemo that Penny had in 2020 since Penny received the lifetime maximum dose and that drug is cardio toxic. She didn’t have any immediate concerns based on Penny’s echocardiogram but will be running some cardiac specific bloodwork next week. She also has Penny wearing a heart monitor for five days to get a sense of her average heart rate since it increases to 140-160 with any activity (even just climbing two flights of stairs). Additionally, since Penny’s cholesterol, LDL and triglycerides are all high, both the cardiologist and oncologist are recommending lifestyle changes including diet and exercise. The cardiologist specifically noted the importance of exercise for Penny because she has lost muscle mass and that can contribute to an increased heart rate.

Unfortunately, Penny has had a history of high cholesterol since she was nine years old so we have monitored this closely over the years. Her lipid profile had been normal the last three years but with all the stress Penny has been under the last six months, she has turned to comfort foods for emotional support. We are trying to work with Penny on some gradual diet/exercise changes but it’s been a little challenging since she’s technically an adult (yet still a teenager with a mind of her own, lol), and she’s going through so much.

Regarding the blue arcs in Penny’s eyes, she saw an eye Dr. last week and her overall eye health is normal so he believes the whites of her eyes are thinning and showing the veins, thus the blue coloring. He’s currently researching her chemo drugs to see if he can find anything that could be causing this.

Tumor Board met on 10/1 and we met virtually with Dr. Sholler and the Hershey team this past week. Tumor Board felt that Penny’s tumor response was positive (they called it “dynamic”) and suggested continuing the trial for Cycle 4 with the next PET/CT on 10/30. The committee also discussed two other options: 1) high dose ifosfamide and 2) chemo pill with carboplatin or similar chemo. Both of these options are more aggressive, however. We’ve previously discussed ifosfamide with all specialists but Penny opted against it due to the expected side effects and inpatient requirement (unless done at Cleveland clinic as outpatient).

If the 10/30 scans show significant improvement, then Hershey will recommend continuing the trial. Otherwise, we’ll discuss an alternative treatment plan. Either way, we’ll be meeting virtually with the team on Halloween. The impact of traveling back and forth to Hershey has taken its toll on Penny (and our family) and Penny has told her local oncologist that she would prefer taking a pill at home. Dr. Sholler mentioned that she would be starting a DFMO trial in Hershey soon so it’s possible Penny could move to that. DFMO is a pill typically used for neuroblastoma but Penny’s tumor studies showed that this drug may be a viable option for her.

As far as how Penny is doing, the good news is that she hasn’t had any nausea or vomiting and the neuropathy is better now that her gabapentin dose was increased. Her biggest issues are fatigue and chemo brain, both of which are sometimes extreme. The chemo brain, which involves short term memory loss, makes life very difficult and frustrating at times.

Next steps include Penny being in Hershey this week for Cycle 4 of the trial. She’ll meet with her local oncologist again on the 21st for labs, including the cardiology specific labs, and then will have labs and the PET on 10/30 in Hershey followed by the virtual Hershey mtg on 10/31. Then we’ll have some decisions to make.

So stay tuned! I’ll provide another update in a few weeks.

09/28/2025

Cycle 3 Update

Happy Fall everyone! Life has been hectic to say the least as we continue to navigate through Penny’s treatment. Earlier this month, after Cycle 2, Penny had her PET/CT that showed stability with the tumors in her upper lobe/pleura and growth in the tumor in her lower lobe. However, Hershey believed this growth could be an inflammatory response to treatment as the tumor underwent necrosis. Scans also showed increased hyper activity in her pericardium so the main concern with that was a blood clot. So, the team delayed chemo and ordered a biopsy and repeat echocardiogram. The biopsy revealed that the tumor was liquifying, which appears to be part of the necrosis process, and thus, positive response to treatment. However, both the liquid and core of the tumor still tested positive for active osteosarcoma cells. The team felt this was promising overall and opted to continue treatment for Cycle 3, which occurred this past week.

Regarding the echo, the good news is that there is no blood clot. But, the echo does show several issues: sinus tachycardia and pericardial effusion, which Penny has had for the last months or so, sinus arrhythmia (new) and Grade 1 dysfunction of the left ventricle (new). So, these will all be reviewed and addressed by cardiology in the next few weeks to discuss potential long term impact and any additional treatment needed at this time.

Also, Penny’s tumor genomic study results have been finalized and the Tumor Board Committee will be meeting this coming week to discuss the results and recommend whether or not Penny should stay on the trial or move to a different treatment option.

As far as how Penny is doing, she is handling chemo fairly well but has good and bad days. She has not experienced any vomiting since Cycle 1 and her nausea has been controlled well by the various anti nausea drugs. But, the diarrhea persists daily. Penny is also very fatigued and often naps 4-6 hours a day. As an example, yesterday she was only awake for /nine hours total. She also coughs throughout the day (uses an inhaler, cough syrup, and cough drops) and we believe this is a result of the lung pneumonitis, inflammation caused by the radiation she had last year. It is unknown whether this will improve or worsen over time. Additionally, Penny is suffering from
chemo brain, which is extreme at times.

Over the last two weeks, Penny has developed a couple new side effects, including neuropathy and blue arcs in the whites of her eyes (no vision changes noted). Her neuropathy presented as numbness, pain, and itching in her left shoulder and numbness in her right thumb. For those who may not be aware, neuropathy is common with chemo. To help with these symptoms, the Hershey team increased her Gabapentin, which is a nerve pain medication. Regarding her eyes, she’ll be seeing an eye Dr. tomorrow to discuss impact and next steps. Hershey has informed us that none of the drugs Penny is taking has this type of side effect. Blue arcs, aka corneal arcus, can be normal in people over 50 as part of aging but typically are due to an underlying condition in younger people. The most common reasons involve high cholesterol, iron deficiency, or connective tissue issue. So, more to come on this after Monday’s appointment.

Next steps for Penny after Monday’s eye Dr visit include an appt with her NJ palliative care Dr on Tuesday, appt and labs with her NJ oncologist on Wednesday, and then hopefully an update from the Hershey team with the recommended treatment plan going forward.

I’ll provide an update next month, which technically begins in just three days! Halloween will be here before we know it, lol! 🎃🍁

08/23/2025

Cycle 1 Update…

It’s been awhile since my last update so I wanted to let you all know how Penny is doing. Cycle 1 of her clinical trial began on Monday, August 4th. During the first five days of every cycle, Penny receives two IV chemo drugs, one chemo pill, and the research chemo capsules. Penny takes 12 research capsules every day of each cycle (six in the morning, six at night). She has quite the regimen of daily medications so I created a timeline on her white board (just like I did when she was on Cabo). It’s quite complex, lol, as she has restrictions on when she can and can’t eat due to the research capsules.

Anyway, the first few days of Cycle 1 weren’t too bad as far as side effects but it all seemed to hit Penny on that Friday (August 8th) when she returned home. That first week afterwards was pretty intense for her as Penny had vomiting, nausea, severe diarrhea, and thrush and barely ate anything other than goldfish or crackers. She lost nine pounds in a week and was very dehydrated so when she returned to Hershey for her 8/11 appt, she had to stay overnight and return that Tuesday and again that Thursday to check labs. Additionally, she had to return this past Monday, August 18th, for labs again. Thankfully her bloodwork was improved, side effects have lessened, and she has been able to eat normally again this week.

But, this process has been tough on Penny emotionally. Her teenage life revolves around hospitals, tests and chemo and her activity is very limited. Her heart rate skyrockets during any activity nowadays due to her tachycardia. She does have a follow up echocardiogram on Tuesday to check the pericardial fluid so we are hoping it shows a decrease in fluid.

Unfortunately, just as Penny has been starting to feel better, it’s time for Cycle 2! Matt and Penny head back to Hershey tomorrow for week one of Cycle 2. Penny will repeat the two IV chemo drugs and chemo pill and continue the 12 research capsules daily. Since her Hershey team is concerned about dehydration again, they are working with Penny’s NJ oncology team to set up home infusion services so Penny can get IV fluids at home next weekend and then she’ll return to Hershey on Tuesday, September 2nd to check labs.

Penny’s next CT and PET scans are scheduled for September 11th. If they show tumor stability or shrinkage, Penny will continue with Cycle 3 beginning on September 15th. If they don’t show either, I think we’ll need to wait until we get the recommended plan from her tumor research study. That’s still in process so we are hoping to get those results sometime in mid to latter September. Then we can decide on next steps.

On the homefront, we are plugging along, lol! Kaylee starts cheer on Wednesday, 8th grade on Thursday, and soccer the following weekend. She’s a busy little bee! Matt and I are looking forward to the Fall weather but more importantly college football! One week and counting! 🏈🦁

08/01/2025

Hershey Update!

For those of you who have already seen the post on my personal page, some of this update will be repeated but I do have some new information, too…

Our trip to Hershey Medical Center last week was productive and we met with Dr. Sholler, the Chief Pediatric Oncologist, and the research team. As a Penn State alum, I was in awe as the entire place is dedicated to PSU, lol! In fact, the actual name of the facility is Penn State Health Milton S. Hershey Medical Center. There are paw prints on the floor, Nittany Lion statues all around, pictures of Dance Marathon (PSU’s philanthropy for the Four Diamonds Fund), and Penn State Starbucks mugs, to name a few!

Anyway, we found out that Penn State is the lead in a consortium that studies the genomics of tumors and then provides recommended treatment plans based on the tumor’s DNA/make up. So, Penny consented to this study and will have a biopsy in Hershey tomorrow. This biopsy will be compared to her initial biopsy in 2020 to determine any changes and to develop the pathway to treat her tumor. The team will duscuss her case in a tumor board meeting and then devise a recommended treatment plan It’ll take @3-4 weeks after her biopsy to finish the research, next discuss in a tumor board meeting, and then we will have a virtual call with the team to discuss the recommendations. So, hopefully we will hear something by mid to latter September.

In the meantime, Penny will start their clinical trial on Monday, August 4th. Her most recent PET showed increased pericardial effusion (in addition to a new tumor and increasing opacities) so Penny had a repeat echocardiogram in Hershey today to make sure the effusion has not increased. Thankfully, it’s about the same so no additional action needs to be taken at this time. She’ll have a repeat echo on August 11th.

Regarding the trial, it involves 21 day cycles and four chemo drugs, two IV chemo drugs and two pills. One of the pills, Silmitasertib, is the research drug. This pill is taken twice a day for every day of the cycle. The other three drugs (Vincristine, Irinotecan, and Temozolomide) are only given on Days 1-5 of each cycle. Unfortunately, that means Penny has to be in Hershey the first week of every cycle. She also has to be there every Monday at least for the first cycle. After the first cycle, she can have bloodwork with her local oncologist.

Side effects can really be anything. They gave us a 23 page packet, lol, and potential side effects were listed for each drug. It’s all the same stuff you’d expect with chemo - nausea, vomiting, diarrhea, fatigue, hair loss, low white blood cell count, immunocompromised, etc. We can only hope that Penny’s effects are mild but we’ll have to wait and see how her body reacts.

Regarding timelime, there really is no end date at this time. Penny will continue the trial as long as she is responding and her body can tolerate the drugs, for up to two years. If the genomics study shows that a different drug will help Penny, they will switch. However, the study could show that her current or past regimen of chemo would be most effective in her case. So time will tell!

While in Hershey, Penny and Matt are able to stay at the Ronald McDonald House which is across the street from the medical center. They have their own room and dinner is provided as well as snacks/drinks available in their kitchen. They’ll be staying there for five nights during the first week of each cycle and then every Sunday night when a Monday visit is required.

Penny is nervous about the trial but also hopeful since we finally have a plan and promising protocols ahead of us. Kaylee already misses her big sister but she will be caught up in a bunch of her own routine medical appts over the next few weeks and then school starts again in four weeks!

I’ll provide another update after Penny’s first week of chemo.

07/20/2025

As usual, we have a lot going on! Last week, we made the decision to stop the chemo protocol Penny had been on due to the extreme side effects requiring hospitalization after each cycle. We discussed next steps with her oncologist and unfortunately, there really aren’t any decent options out there for Penny. The pill mentioned by our oncologist a month ago would include a greater risk of pneumothorax to Penny now due to her lung condition. So it’s not recommended.

On my end, I have been doing a lot of research, found six potential clinical trials within a 7-8 hour radius from our home, and sent all the information to Penny’s oncologist for review. One of these trials is located at Hershey Medical Center about two hours away. So, I decided to use my Penn State alumni connections and reach out to the lead nurse investigator, Suzanne, who responded back to me within an hour. For my fellow alums…We Are, lol!

Anyway, Hershey requested some paperwork and I was able to coordinate with our amazing local nurse navigator who gathered all the current documents (and uploaded scans) while I gathered all the 2020/21 stuff. 40 documents
later, lol, they were able to schedule a consult with Dr. Sholler, Chief of Pediatric Oncology, (and the lead for this trial) on Wednesday. She is an experienced researcher, involved in over 40 clinical trials, and was able to get the FDA to approve a drug for neuroblastoma. I remember Dr. Anderson telling us about her as a resource for Penny while she was attending Penn State Harrisburg.

So, Matt and I will be heading to Hershey with Penny this week to find out more. We have no idea if she’ll be eligible for this trial but I least we got the initial appt quickly and can go from here.
The trial itself involves a research pill along with three FDA approved chemo drugs currently used for other types of cancers. Penny’s oncologist did get back to me and felt the Hershey trial looked to be the best in terms pf safety, tolerabilty and feasibility.

In the interim, tomorrow Penny will have repeat pulmonary function tests and a follow up PET scan. I’m a little anxious about the PET as it’s been 3 1/2 months since Penny’s last one and this is the first PET after her three hospitalizations and current need for oxygen. So, I hope for stability and no further spread.

As far as how Penny is doing, she is status quo. Her thyroid levels have increased so those are being monitored closely. She had a follow up echocardiogram on Friday and they thoight she might have a blood clot in her port so she had to have an ultrasound. But, thankfully it was just scar tissue. The echo also showed increased pericardial effusion (fluid) so the PET will shed more light on this.

It should definitely be a busy and eventful week.
More to come as we have more information and can determine next steps!

07/12/2025

I wanted to provide an update as there has been a lot going on and treatment changes for Penny will be forthcoming. Penny had the last Cycle 2 infusion of the Gemcitabine/Docataxel chemo last Monday, June 30th, and then spiked a 102.5 fever and extreme shortness of breath on July 4th. She went to the ER, as advised by oncology, and she was admitted to the hospital. Penny’s chest x ray did not show pneumonia but she was put on IV antibiotics for a suspected infection. Her hemoglobin also decreased significantly again so she received her third blood transfusion in a month. She was discharged on Monday (7th) and sent home on two antibiotics.

Unfortunately, Penny’s oncology team (and us) has concerns with her continuing this chemo protocol because Penny ends up in the hospital after every cycle. Each time, her condition deteriorates slightly. Penny is now on oxygen all of the time and uses a portable oxygen machine when navigating our home.

Penny’s CT had mixed results. In her right lung, two tumors remained relatively stable (slight increase but not greater than 5mm to be considered significantly relevant), one tumor decreased, and a new mass like opacity was seen in the upper right lobe. The CT also showed decreased lung volume in her right lung. In her left lung, a large opacity was seen as well as additional opacities in her lower lobe and a prevascular lymph node (uncertain of that particular significance).

Penny’s oncologist was out of town this week so we will be meeting with the Dr. on Monday to discuss next steps as far as the next treatment option. Penny has already attempted five treatment options since November 2024 so this will be the sixth. I believe the oncologist may recommend another oral chemo pill, Stivarga, which is similar to Cabo, or possibly another clinical trial if one is available for Penny. Stivarga would cause similar side effects as Cabo (nausea, diarrhea, thyroid and blood pressure issues, hand/foot/mouth syndrome, and risk of pneumothorax and pleural effision). Stivarga would also be a temporary solution as it typically is only effective for 3-4 months. We would just hope that Penny’s body can tolerate the drug and she’ll have better stabilization than 3-4 months.

Next steps involve the oncology meeting on July 14th followed by a PET scan on July 21st. I’ll provide another update as we have more information and a solid plan.