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Giorgio Guglielmino
Giorgio Guglielmino
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Giorgio Guglielmino
29289
visits
Giorgio's CaringBridge
Giorgio Guglielmino
29289
visits
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Giorgio’s Story

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

If you’ve found your way here, then Giorgio’s story has found you, you care, and you want to know what’s going on with our little warrior. For those American/English-speakers, updates will be made by Uncle Don (John Sobolewski) and Auntie Lauren. We’ll try the best we can to have Andrea’s sister, Debbie, translate updates to those of you overseas in Florence (and beyond) who are here for the journey.

 Giorgio’s story to recovery began in early November, when LeeAnn and Andrea noticed something was just “off” about Giorgio. He had trouble sleeping, had frequent and random episodes of vomiting, and had spoken of near-constant headaches that began affecting his appetite. After weeks of consultation with specialists and a growing frustration at the seeming lack of progress or a definitive prognosis, a November 22nd MRI confirmed that Giorgio had a cystic mass in the right frontal lobe of his brain that resembled a tumor.


Unfortunately, that path to recovery is going to be longer than we were hoping. Giorgio’s tumor was found to be cancerous. The pathology results came back far sooner than expected and are consistent with a malignant and rare form of brain cancer called atypical teratoid rhabdoid tumor, or ATRT.

The current plan is a “trimodal” therapy – surgery (already completed via resection on 12/5), five cycles of chemotherapy (two induction cycles at Children’s’ three high-dose with stem cell transplant at UMN Masonic) and proton radiation at Mayo.  Given how aggressive ATRT is, there are little to no pause and the initial treatment is expected to be complete by end of July. As a reminder, Giorgio’s birthday is July 30th and his family is looking forward to celebrate his 5th birthday and the end of the first phase of treatment. 

After that the road to recovery includes 1 year and half of monthly spinal injections and daily oral chemo. Frequent scans and check-ins.

We’ll continue to post routine updates on this page as the family progresses through recovery. Thank you for reading, for supporting Giorgino and his family, and for the constant prayers and support received. It is needed. And we love you, too.



Andrea's sister has also created a GoFundMe page. Click "Ways to Help" above and follow the link there for more information. 

Forza Giorgio!


*CLARIFICATION ON DONATIONS*
Due to the amazing support and generosity that loved ones near and far have been showing, we want clear up some confusion around tributes vs donations.
To clarify, “Tributes” go to fund the CaringBridge websites (not just this one), which is a worthwhile cause. However, if you would like to help Giorgio and his family directly, please consider the options outlined in the “Ways to Help” tab where, along with the GoFundMe donations to the family, you can find other ideas such as takeout, groceries, delivery gift cards, helpful chores, etc. We will post updates there about additional needs as they arise. 
If you made a tribute to CaringBridge but meant to donate to the family, please call CaringBridge at 651-452-7940 (tel:651-452-7940) (tel:651-452-7940 (tel:651-452-7940)) or email them at CustomerCare@CaringBridge.org and they will refund your donation.
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Thursday, October 17, 2024

The short update is clear scans!

The longer update- the two spots we’ve been watching continue to fade and are likely just scar tissue from the initial tumor removal surgery. No evidence of any other tumor or cancer. The cerebral spinal fluid we are watching has reduced some, which is great, but not enough to try to turn off the shunt or remove it. So for now it stays where it is and we stay the course. Overall Giorgio’s labs look really good.

Other updates-

  • The location where Giorgio’s g-tube once sat is healing really well.

  • We are continuing to wean from his AFO’s. He’s wearing them only a few days a week to school and we expect to be completely done with them by end of November.

  • Dr. Bendel has given us the green light to remove his port, so we will get that done in the next month.

I have to say that stopping maintenance medication was really scary for me, but this first clear MRI following gives me a lot of hope for the future!

Lastly, right before the MRI took place, the anesthesia team felt that Giorgio’s front tooth was a bit too lose for sedation, so the tooth fairy came for a visit Tuesday night.

Thank you for the continued support and prayers/encouragement/good vibes. They mean so much to Giorgio and our family.

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3-months MRI

This morning bright and early LeeAnn, myself, Giorgio and his baby sister Ginevra arrived at Children’s Minneapolis for the first MRI post treatment. His school is off given MEA and we picked this week for MRI, neurosurgery consult (tomorrow) and scan review (Thursday).

Life has been keeping us busy. Giorgio is really doing well and lighting up our days with his personality. I talked about scanxiety before, and last night and this morning I had flashbacks of November 22 when we first learned about his tumor.

No chemo through his spine this time. We also elected for a different sedation process and Giorgio was put asleep in general sedation via a mask. It didn’t make it much easier than being poked/access via his power port on his chest. But his port will be removed if this scan shows that everything is still clear.

Please everyone cheer for a clear scan, so Giorgio continues to live a “normal” life as a 6-year old.

Positive energy and prayers are welcomed.

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The (Hopeful) Final Step

After nearly a year since my last CaringBridge post and two since Giorgio’s initial diagnosis (11/22/22), I’ve returned to champion my now-realized life’s calling: being the preeminent figurehead of high society fundraising galas.  It’s admittedly been a steep learning curve; I’ll admit a few jokes were spared at my expense after I politely – mind you – asked Andrea, Curt, and Bill what they’d be wearing to this Humor to Fight the Tumor Gala. I wasn’t thinking, I don’t know, blue jeans, but I also wasn’t necessarily expecting to be outdressed by a 6-year-old. Giorgio, with his cute little purple bow tie that so nearly mirrored his father’s tuxedo, was of course the evening’s star that others seemed to infectiously gravitate around.

As Giorgio did what little boys do throughout the evening, I couldn’t help but notice the observant, corner smiles of older women that caught him sword-fighting with glow sticks. The admiration that strangers cast upon this seemingly out-of-place, happy-go-lucky kid that so obviously represented something not typical, I imagine, at other galas: the physical and psychological manifestation of the evening’s purpose. A true embodiment of life, hope, and, perhaps, victory. I say “victory” reluctantly only to honor the ongoing fight Giorgio continues waging, but if there was ever a singular moment in these past 2 years that felt victorious, it was when the Guglielminos took the stage that night in honor. While there, as they were surrounded by their family, friends, and even neighbors, I recalled something that I’d previously written on this site. On December 16, 2022, I wrote a post called “Round 2” that detailed Giorgio’s treatment plan. It was the first time the family had any indication as to the journey this would eventually become. And, looking back on what was written, it seems both daunting and not even remotely amounting to the total effort and personal investments expended. The post ends:

Round 2’s just begun, but I have a feeling this match will be decided by a decisive total knockout. With Giorgio standing victoriously over that which tried its best to win but failed. With all of us in the stands cheering, crying, and hugging each other in disbelief of the once-in-a-lifetime achievement we’ve witnessed.

It is a bit surreal to feel validated by the final hopeful step to this treatment plan that the post details: Massive celebration! The Humor to Fight the Tumor Gala certainly was that, but it was the evening’s shared experiences that put into perspective just how much of an achievement Giorgio’s story continues to be. While we were there to celebrate Giorgio with each other and honor the evening’s mission, I began to feel overwhelmed by just how many these awful diseases had touched. For all the joys we shared that evening, it is important to recognize there exists counterbalancing despairs from families that were not so fortunate. Many of those in attendance had lost a loved one that year, had their cancers return, or endured other damning misfortune. The night’s attendance, regardless of circumstance, resembled two significant themes. Firstly, that life is to be celebrated. That our very improbable cosmological existence is constantly under attack from natural forces we continue to demystify. So, by extension, our continued prevalence against these circumstances is in of itself something worthy of reflective appreciation for continuing to be, especially amongst loving communities of family, friends, and others that have stared cancer down and refused to blink. Because regardless of the cancer’s outcome, just having been with that person is to be celebrated. Secondly, Giorgio’s particular case speaks to the power of hope, especially its ability to sustain positivity and to inspire future cases that are similarly affected by what seems like a statistical improbability. Look, I’ll be the first to admit that I spent several nights scouring the depths of the internet processing, researching, and hoping to find some shred of evidence, no matter how small, that Giorgio was going to be okay. In hindsight, I wish I had never done that, and I encourage others not to, either. You become bombarded with probabilities, treatments, and potential outcomes that may or may not happen. What they will do, undoubtedly, is form some unverifiable notion about your loved one’s outcome. At the end of the day, should these percentages of survival matter? Do they make anyone feel any better about the reality we’ve found ourselves in? Statistics are imperfect, and that is coming from someone that has effectively made numbers their career. While they can certainly guide rational decisions and treatment options, they should not influence what – and maybe the only thing we as individuals – we can control: our unconditional love and support for those affected. Even the unlikeliest of numbers can represent this hope; for no matter how low the outcomes of survival may be, there are always the precious few percentiles that make it. I like to think that is the type of hope Giorgio embodied that evening; the youthful personification that despite the odds, there is always a chance.

When I previously cast assimilations between Giorgio and a boxer, I couldn’t imagine what the “all of us” actually meant when I spoke of us cheering, crying, and hugging each other in disbelief. How far Giorgio’s story would, in some cases quite literally, travel. Lord knows I did my own fair share of quiet crying. I told the Steffens from day one that Sobolewskis are criers, and they’re just going to have to get over that. At first, the cries were lonely, sad, angry, and somehow cold. Now, they’re warm with joy and gratitude for Giorgio, his amazing parents, and the unbelievable communities we’ve found solace in far and wide. As I think of those present during the gala (and in spirit in Florence!), I can almost write a separate, probably unbearably long, reflection on how each of them played their part in Giorgio’s orchestra of care. Traveling the world to care for Giada (and Elvis…), providing shoulders to cry on and native tongues to speak in, chauffeuring the back and forth between appointments and rests, cooking, cleaning, shoveling, mowing, potty training, drinking wine, and, most importantly, exuding the quiet confidence that everything was and is going to be okay. It goes without saying that nobody should have to endure what Giorgio and family have gone through. But if you do find yourself in similar circumstances, surround yourselves with people like the Steffens, Guglielminos, and friends. Things certainly weren’t perfect through it all, but I am forever proud of the grace this family demonstrated time and again. Especially when it was hard.

I thought I’d have interjected a little more humor into this post, but gol’ dang it I popped on some classical and the sappiness just came out. I’m sitting here trying to come up with a single humorous story about Giorgio over the summer, but I’m realizing that’s maybe not the point anymore. When he was sick, any bit of Giorgio humor was so striking that its memory was seared into my conception of him and filled my “fuel tank of hope” ©Sobolewski (yes, I’m going to copyright that…is that how it works?). Now, my memories of him are almost overwhelming positive and filled with laughs at his spirit and the ridiculous antics he gets into with my own kids. Rather, the gala may have been the abnormal reminder of Giorgio’s return to “normalcy.” That this little cute punk on stage did it. That cancer’s cascading effects are greater than just the affected families. That, despite decades of funding, galas, and donations, we still haven’t figured this cancer thing out. That when he looks up to his quietly tearful father, his enormously pregnant mother, and his scheming little sister, he is recognizing the shared struggle and joyful future his family represents. One of hope, unity through struggle, and to never, ever believe only in the numbers.

"I will not fear, for you are ever with me, and you will never leave me to face my perils alone."

- Thomas Merton

Forza Giorgio (forever)!

 

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End of Summer highlights

Hello there,

Finally, we are addressing the "Write a Caringbridge" update.

  • A few days after the MRI on Giorgio's birthday, Dr. Bendel reviewed the scan result, and she was pleased to share that it looked clear. The next scan is on October 15.

  • The cerebral fluid doesn't seem to have improved, and we are waiting for the upcoming scan to decide how to proceed.

  • Big news! Dr Bendel recommended removing the gastrostomy tube (G-tube). Somehow, Giorgio's appetite returned, and he is CONSTANTLY hungry and eating a wide array of food and snacks! While still skinny, he is slightly getting some meat on those bones.

  • The team also discussed removing the subcutaneous port used to administer sedatives and draw blood samples. This will possibly be done after the next MRI after we ensure everything is proceeding as we hope and expect.

  • PT is over. Giorgio has improved a lot, and while there is still a delay and work to do, we are moving to a quarterly check-in for a bit. We have a list of appointments at home, but no more weekly appointments for now. We also have a weaning schedule to stop using the AFO/Leg braces that should last until the early December check-in with PT—progress is slow and steady.

  • On the other hand, we had to increase Speech sessions as his hearing seems to be continuing to degrade as a side effect of high-dose chemo (cisplatin, carboplatin) that can continue to impact his hearing for years to come. 

  • A weekend at the lake with the extended family and all his favorite cousins. 

  • Zia Debby came to visit from Italy, and it was a great three weeks of fun, a lot of activities and love. We miss her all already.

  • While she was here, Giorgio Graduated from PreK with a fun graduation ceremony. We also took some family photos to welcome the baby girl who will be joining us at the end of September.

  • A few days later, he had his first day of kindergarten. I don't want to underplay the importance of this one, at least for us. I was pretty emotional on the first day at the drop-off and pick-up. It was a massive milestone. It looked nothing like we may have imagined in November 2022 - we held him back one year to recover from the treatment, we picked a different school with smaller classes, giving away bitterly the Spanish language immersion curriculum that followed him since birth to prioritize aspects that we hope can help him thrive. We are dealing with many constantly evolving side effects impacting his life, particularly at school. But it feels so good to see him excitedly running into his new school, given where we have been over the past two years.

We are keeping ourselves busy with sports after school and other commitments. Next, this upcoming weekend, the Humor to Fight the Tumor Gala will take place in downtown Minneapolis to support brain cancer research. Giorgio will be honored. We are ready to celebrate Giorgio and the other three honorees who are dealing with gnarly diagnoses but with the best possible attitude.

Keep on keeping on.

-Andrea

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New MRI & Giorgio is turning 6!

Usual update from the Children’s waiting room has Giorgio is undertaking his routine MRI and monthly spinal chemo injection. As usual we are monitoring brain and spine and hope for another clear scan and, as every other time, the universe good energy from close and far is needed.

Big day because this is supposed to be the last spinal injection. If all is good, Giorgio can also go off chemo medicine: we would drop the daily oral medications (tamoxifen+isotrerinoin).

It is also a big day because Giorgio is turning 6! Unfortunately our attempts to move the MRI to a different day were unsuccessful so we are trying to make the best of this day with a few ballons in his room once he wakes up from the anesthesia.

I’ll admit that the usual routine has been pretty hard this morning. Giorgio, LeeAnn and myself showed up at 6:30AM at Children’s. All went well thanks to Big Hero 6 and Baymax accompanying us on the tv, until his power port was supposed to be accessed. Giorgio hates needles (so do I) and his anxiety was at new highs, kicking and screaming. The team was great and really went smooth after a bit of struggle. Kudos of the team as always. He also rebounded so quickly and started smiling and laughing about Baymax deflating aka the “farting” scene. If you are a parent of young kids and have watched this movie, you probably know what I’m talking about…

Giorgio was then extremely sad about “going to sleep” via the propofol sedation. Something unusual for him. He wave goodbye to LeeAnn and me right before closing his eyes. It was really hard to watch, more than usual.

I wonder if the sense of normality pervading our lives is contributing to making these invasive medical procedures so hard for all of us. Summer is going well and fast. We are busy, as a normal family usually is. Giorgio is enjoying the last few weeks of PreK and he is showing us so much of his fun and chatty self. Loves playing with Legos, drawings and reading a good book. We love seeing how he is growing. Yesterday, out of the blue, he told us he wants to be a scientist like the one that stops by his class once a month to show the kids some fun experiment. This morning, noticing my T-shirt with the iconic image of Muhammad Ali over Sonny Liston (that I usually wear for his MRIs) he asked me for the name of the guy hovering over his opponent and said he wants to be a boxer. I love his curiosity and diverse interests in trying new things!

Anyhow - I just wanted to send an update as I usually do. hoping for good news. Happy birthday to our sweet, funny, smart, loud little warrior with the biggest blue eyes.

We love you Giorgio!

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All for One, One for All

The difference one year makes. A year ago today, we made our first trip down to Mayo for the simulation of Proton radiation therapy: meeting the team, MRI, and planning and tips for the six weeks of morning full-body sedation and proton beam radiation. I'm attaching a picture from exactly 1 year ago showing Giorgio drinking some Lemonade at a restaurant on Broadway that became our favorite spot in town.

365 days later, and a lot more hair later (at least for Giorgio...) quick update while we continued to be showered by messages of jubilee post clear scan. I’ll try to keep it short - not my forte - but I do want to acknowledge a few things.

LeeAnn and I have been less involved in social media, especially her. I do mingle more in all the groups that talk about ATRT and side effects to learn from others. We have a big family of kiddos, parents and siblings changed by pediatric cancer that we try to support, encourage, hug and inform. However, outside of that we don’t post a ton of life updates.

So I’ll use this site that is dedicated to Giorgio’s journey to remind everyone how cancer changes the life of a family across the board: Giada, for example. She spends a lot of time away from her favorite person (I come third, LeeAnn second) and the bond with Giorgio is something that both LeeAnn and I have observed and enjoyed in the past year and a half. So remarkable to see how much she loves him and how that love is reciprocated.

“Giada, let’s dance,”  he told her last week, while she was wearing her new Cinderella's dress.

“I want to marry Giorgio”  Giada shared with us recently.

This past weekend we celebrated the 4th birthday of the most stubborn, sassy, sweet and sneaky girl I know. Giada turned 4 on June 1st and we overindulged in Cinderella-themed sweets with family and friends. We have also decided to take a quick trip to Italy in the coming weeks for a few days to celebrate there too with my family that doesn’t get much to see her or Giorgio. Both kids are pumped to get on a plane.

Giada is a big piece of this journey that may be forgotten at times. We know she has suffered the fact that mom and dad were away for a long time.

She didn’t get to visit in the hospital as much to protect Giorgio and other patients from possible diseases she caught at daycare.

She didn’t get to come to Rochester during the week, as she stayed behind with Nonno and Nonna to attend school regularly.

And we didn’t get to potty train her, to see how her speech went from ok to fluent in two languages. Her Italian is probably better than mine at this point thanks to her Italian grand parents.

So Happy Birthday Giadina, we love you so much.

Also she is one of the reasons (not the only one) that we have decided that we were ready to expand our family. Not many know that LeeAnn had a very traumatic miscarriage two weeks before we learned about Giorgio’s tumor. We took it as a sign that we were supposed to focus on him.

During the journey we also thought about our Giadina alone without her big brother. We noticed how awesome she was with him the few times she got to visit while in patient and when we came back home. And we just know she would be an awesome big sister.

This post is to wish Giada, our princess, an amazing 4th birthday and to mention that our family will welcome a baby girl in mid-September.

All for one, one for all. We learned the hard way but also know it is the best way to move forward.

 

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Still Clear

Thanks for the several messages and words of encouragement! 

Last night we got the confirmation via message that “His spinal fluid looks good--no sign of ATRT within the fluid.” The fluid is checked monthly and always takes 24-48 hours to come back. Next check on the fluid, with his chemo via spinal tap, in one month.


We were previously informed that the pictures of the brain and spine don’t seem to show recurrence. Of the three spots that were being monitored, two seemed improved and one is stable. However two new spots appeared. The doctors believe all of these should be classified as post radiation changes due to the high dose of Proton that hit his brain. The only thing to do it's to monitor. Giorgio is scheduled for another MRI at the end of July. We were informed we will continue with one MRI every three months for one more year. After that, the possibility to move to once every 4 months.

Finally - the neurological team is pleased with the progress made in terms of reducing the fluid. There is still a way to go (was 1.5cm two months ago; now 1.1cm) but the plan down the road remains to try turning the device off at some point to see what happens and consider maintaining or removing the shunt. 


Other updates coming soon…

 

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New Scan Tomorrow - May 28th 2024

After several weeks of radio silence, I share a quick update with everyone following Giorgio's journey. And the usual wave of positive thoughts and energy from near and far are welcomed.

In a few hours, at 6:30 AM Central time on Tuesday, May 28th, we have the first of a long series of appointments at Children's Minneapolis to check suspicious spots and the fluid around his brain.
After turning off the shunt, the doctor will proceed with a full-body MRI, usually occurring every three months but currently scheduled every 6-8 weeks, to observe how the few spots that have appeared on the most recent scans are progressing. As usual, Giorgio will receive propofol (for those keeping the score of total intravenous anesthesia, we are well over 50 at this point), followed by a spinal chemo injection. Once he wakes up from sedation, we will meet with the neurosurgery team around noon and, finally, the lead oncologist around 3 PM. Giorgio, LeeAnn, and I will have a very long day at the hospital. 

As usual, Giorgio is in good spirits but has been dealing with a bad cough for the past few weeks. This is true even tonight, with frequent episodes interrupting his sleep (and keeping me awake, causing me to write this post). I wish we could both rest up before such a lengthy undertaking.

To be honest with you, there are so many draft posts and updates I wish I could have shared: from the new braces/boots along with remarkable progress on the PT side to the sharp decline in hearing that required us to start regular speech appointments and get a more powerful pair of hearing aids, passing by the frequent checkups with his doctors (including the first anniversary from his most recent stem cell transplant at the UMN Masonic Hospital!).

I would also like to share some inspiring stories of beautiful people crossing our paths at a local pizza joint and the importance of this month, May, for anything related to brain cancer research. Also, I invite you to save the date for September 7th to rally around cancer research: more details and a list of resources dear to our hearts coming soon.

I wish I could talk about Mother's Day playdates with cousins, new sports experiences, and the summer kick-off. I want to speak about and recognize new and old friends and their life events that have deeply touched us, inspired or saddened us since our last post.

I wish I could, in particular, share some of the sweetest anecdotes about drawings, the colors of the rainbow, and genuine lovely hugs distributed left and right about our intimate celebration of LeeAnn's birthday and the incredible bond with his partner in crime, Giada. 

But there will be time for more details on all of these.
For now, we focus on this scan. 
So once again, as it became usual on these occasions, I am calling for all the positive energy that Giorgio's Army can send our way.

I'll share an update once we get the result.

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Ginger & Bill Simek
April 9, 2024
Happiness is........ Positive thoughts continue for Giorgio and the whole family! Ginger & Bill Simek

Scan is substantially unchanged

Just a quick update to share the good news that the team doesn't think there are signs of relapse.

After an unusually long wait that made us think the worst (“Are they thinking about how to tell us?”; “Are they reviewing it with the whole team to come up with a plan”) we finally got the reading that things remained similar to two months ago and the spinal fluid is clear. The two spots that require continuous monitoring are likely post-radiation changes. One shrunk in size while the other is a bit bigger. 

News on the cerebral fluid and if the shunt is working as expected will need to wait for a follow up with the neurosurgeon in two weeks.

Thanks for all your messages. More news to come soon.

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