Eric Dakota Ruegsegger September 13, 1995 - September 10, 2005
We love you, Eric.
In late May 2003, Eric (who was 7 at the time) was taken to the pediatrician to look at a lump on his tailbone. That day, Eric had an MRI, which showed a "well-circumcribed mass" in the sacral region (between his rectum and tailbone). After Memorial Day, Eric was admitted to Children's Hospital, St. Paul for surgery to remove this mass. The surgeon removed the tumor as well as part of his rectum. Initial pathology reports showed that Eric had cancer. By mid June, the final pathology reports came in and Eric was diagnosed with Stage 2 Alveolar Rhabodmoysarcoma.
6/2003: Hickman Cathedar inserted and Eric began Chemotherapy 9/2003 - 10/2003: Eric completed 4 weeks of radiation treatment 3/27/2004: Eric finished Chemo! 4/27/2004: MRI scan clear; CT scan revealed unknown mass in lung 5/2004: Repeat CT showed no change in mass in lung, so Eric is considered in remission.
6/30/04: Eric's cancer has relapsed. His regularly scheduled MRI revealed 3 lumps in his groin. 7/1/2004: Surgery to remove lumps 7/6/2004: CT scan today revealed another mass next to his left pelvis wall and two small lumps in Eric's lung 7/22/2004: Hickman re-inserted 7/26/2004: Chemo Started; Another CT of lungs show that there are now 9 small lumps in his lungs 9/8/2004: Scan Day - CT and MRI show that the lumps in Eric's lungs are fewer (now 6 nodules) and smaller, but the ones in his pelvis are larger. There are now two larger than 3 cm in diameter. Eric will be on the "Non-Responders" chemo which includes Tirapazamine. 10/26/2004: MRI results show that the tumor in the right slide in Eric's pelvis is the same size as in Sept (2.6 cm x 3.1 cm), however, the left side, the tumor is now smaller than in Sept (1.3 cm x 1.9 cm now). No new tumors noted in abdomen. WHEW! 10/29/04: CT Scan and Bone Scan show only 2 very small nodules in Eric's lungs - down from 9! However, right kidney is hydronephrotic - enlarged - due to the right ureter being pinched shut by tumor on right side abdomen. Eric will have surgery on 11/4/04 to insert a stent to allow the kidney to drain. 12/22/2004: CT and MRI scans show no change in tumor sizes or shapes. Chemo will continue as planned. Stent working well, kidney is normal.
2/18/2005: Scans (CT and MRI) show that the metastatic tumors in Eric's lungs are stable (still 3 small ones), the tumor in Eric's left abdominal lymph node is gone, but the tumor in Eric's right abdominal lymph node is largers (now approx 2x3x4 cm) and is pressing on and wrapping around Eric's bladder. One more round of Tirapazamine.
April 7, 2005: CT Scan shows increase in size of tumor in right abdomen. It is now pressing on the sciatic nerve, bladder and ureter. Left tumor is also larger and there are now 7 small nodules in Eric's lungs. We are changing to a new chemo regime: Vinorelbine, Topotecan and oral Cyclophosphamide. June 2005: Tumor in Eric’s right pelvis is now >7cm x 7 cm; the left side is now 3cm diameter or so. Lungs are showing new growth, but at this time aren’t affecting breathing. Radiation treatment began 6/22 on pelvis only and will continue up to 5 weeks. Began Avastin, new “chemo” on 6/24.
July 15, 2005: CT Scans show increased # and size of tumors in Eric's lungs. Pelvic tumors have increased significantly in size. Right kidney is, once again, hydronephrotic. We have made a decision to stop radiation and chemo. Eric will continue to recieve pain meds and IV fluids, however.
July 20 – Aug 4: We visited Hawaii for a final family vacation and had a wonderful time. Eric’s final wish was to see volcanos and swim with dolphins and we managed both of those things. Remarkably, he was feeling pretty well and the pain in his leg wasn’t too bad. It was a very good trip. Aug 15: Eric had a final CT scan – he wanted to know what was going on in his lungs. CT showed the tumors in his lungs were extensive and that his left lung was being compressed by fluid. His pain meds were increased a lot during the final two weeks.
September 10, 2005: After a very rough week in which Eric had lots of trouble breathing, Eric died at 6:05 am.
Exerpt from Autopsy: Respiratory System: Lung lobation - normal right lung lobation; left lung not examined Pleura: diffuse tumor studding of all lobes of the right lung Parenchyma, cut sections diffuse involvement of metatstatic tumor to all lobes of the right lung. The lungs showed near total replacement by tumor. On cut section, the tumor was tan-white in color and had a fleshy consistency. There was necrosis identified. Mulitple samples were saved in RPMI media glutaraldehyde, and snap frozen. Pelvis: A firm, large, fibrotic mass was noted in the deep posterior aspect of the pelvis. It was difficult to ascertain where this fibrotic lesion originated and ended due to dense fibrosis. Multiple sections were submitted for microscopy, in RPMI media, snap frozen, and placed in glutaraldehyde. Microscopic: Sections taken through the lung and pelvis show diffuse replacement by metastatic alveolar rhabdomyosarcoma. These cells have an overall nested architecture. Cytologically, the cells have a high nuclear to cytoplasmic ratio with occasional prominent nucleoli. Some tumor cells show marked pleomorphism and atypia. There is marked tumor necrosis. The sections taken through the pelvis show dense fibrosis with focal areas of hemorrhage and necrosis. Sections taken through the lung show near total replacement of the lung parenchyma with extremely small areas of residual alveoli.
Tumor Analysis - this is from Eric's 1st tumor - removed in May 2003 Solid tumor; blue cell tumor G-banding Band level 375 Metaphase Cells: analyzed 13 full Karyotyped 8 full; 5 partial Karyotype: 90 ~ 93, XXYY, t(2;13)(q35;q14)x2,-10,+der(13)t(2;13)x2,-21,-22+mar,~100dmin [cp12]/46,XY[1]
Interpretation: The analysis of thirteen metaphases from this specimen shows two cell-lines; evidence of one cell-line [1 cell] with an apparently normal male karyotype (46, XY) and one cytogenetically-abnormal cell-line [composite of 12 cells] with numerical and structural chromosome rearrangements. The most significant abnormalities are the t(2;13)(q35;q14) and the numerous (~100) double minutes. The 2;13 translocation, a characteristic chromosomal rearrangement in alveolar rhabdomyosarcoma is found in 70% of all rhabdomyosarcomas of this histological subtype [Heim and mitelman, 1995]. To confirm the identity of the double minutes, fluorescent in situ hybridization (FISH) is being performed using the MYCN probe with is specific fro the N-myc locus located in G-band region 2p23-2p24. FISH: Probe: LSI 22q11.2 (TUBLE1) (red)/ LSI 22q13.3 (ARSA)(green) FISH Interpretation: Exhibits three signals for the TUBLE1 and ARSA loci
Eric's family consists (in July 2006) of Kasey (mom and author of this web page journal), Mike (dad), Katy (sister - age 13), Sydney (dog - age 14), Annie and Patches (cats - approx age 7), Midnight and Misty (mice – age 1 ˝) and various fish (unknown ages and unnamed).
Eric was on the News! Here is a link to the Adopt-A-Room story in December 04. Eric is the one talking about the smells in the hospital Kare 11 Adopt-A-Room Story
Wow! Katy's in the Jan 05 issues of Children's Magazine from her work on the Youth Advisory Committee! Children's Magazine Article
Adopt-A-Room Story in MPLS/StPaul Magazine Eric is in the pics and there is a fine quote by me Adopt-A-Room Mag. Story
Rhabdo Surviviors>
Rhabdo Warriors
Rhabdo Angels
RHABDOMYOSARCOMA RESEARCH Please send donations to: Trustees of the University of Pennsylvania C/o Dr Frederick Barr MD,PHD University of Pennsylvania School of Medicine 505C Stellar Chance Laboratory 422 Curie Blvd Philadelphia, PA 19104-6082
One out of every 330 children will get cancer before age 20. On average 46 children (2 classrooms) are diagnosed with cancer each day in the United States. Despite major treatment advances for most childhood cancers, improved treatment of alveolar rhabdomyosarcoma has lagged. The statistics for survival of metastatic rhabdomyosarcoma are dismal. We need to find new treatment methods if we are going to start saving these children.
Dr. Barr's research into Alveolar Rhabdomyosarcoma, has led to the realization that a small piece of either chromosome 2 or 1 is moved to chromosome 13. This is called a translocation. In alveolar rhabdomyosarcoma translocations, the PAX3 or 7 gene gets moved next to FKHR, resulting in the creation of a new gene that stimulates tumor growth. The affected genes produce a new protein that isn't found in normal cells. This is vital information. It can be used to better diagnose and, hopefully, to cure this cancer. Dr. Barr's laboratory is working to determine how this new protein causes cancer; and, more importantly, how to stop this from happening. He is also looking for ways to help individualize viable treatment plans. Only about 350 children in the United States develop Rhabdomyosarcoma each year. Because this disease is rare, it doesn’t often make the news; or attract funding and medical research. It takes dedicated individuals like Dr. Barr to pursue research into rhabdomyosarcoma. The discoveries he is making may ultimately lead not only to a cure for all children with alveolar rhabdomyosarcoma, they may lead to a better understanding of the underlying causes of cancer. We urge you to donate to this important research and we thank you for your interest in saving children's lives.(This is from Suryan's website at http://survivor-support.rare-cancer.org/rhabdomyosarcoma-research-donations.html)
Journal
Sunday, February 3, 2008 8:10 AM CST
Nearly 2 1/2 years. It has been nearly 2 1/2 years snice Eric died. It is odd just how much I break my life into small chunks of time - 1/2 year, 1 year, 2 years, 2 1/2 years - since Eric died. I live my life in small bits now.
I have another time period of meaning that I'm approaching: 5 years. In May, it will be 5 years since Eric was dx. I can't beleive that 5 years have nearly passed and I can't beleive how much life has changed since.
Well, I managed to complete my 2nd degree. I now have - or will have after the graduation ceremony in May - a BS in Genetics, Cell Biology and Development. I feel good about it - managed it with a 3.875 gpa (good, but not 4.0 as I hoped) - yet somehow I feel a bit like a failure for not going on for the PhD. However, I just can't swing another 7 years of school - I don't have time or money any more.
So, after taking a month off, I have updated/renovated my resume and I've been looking at various web pages and doing company research. I'm ready to look for a job. That doesn't mean I'm ready to actually work tho =). There are several local companies that look promising: R&D Systems, Diasorin, Pace, Medtronic, Surmodic, 3M. It looks like I won't have too many troubles finding some sort of a job. I do admit to being somewhat picky - I want a job that pays DAMN well and has good benefits. If I'm gonna do this, I'm gonna do it well and I deserve the benefits!
Katy is KICKIN' ASS in high school! I'm so very proud of her. She's getting mostly A's so far and is really very good at taking responsibility for her homework. This weekend she's going to register for next fall's classes and she's signing up for Honors classes! There was a time not long ago that she'd have sneered at that because it would have meant more work!
Mike's job keeps him busy - he had a big trip to Asia last Dec, but it looks like he's got a little break for a while. Mike continues his puppy traning with his "puppy", Samantha (a 65 lb, 9-month old Yellow lab). She's a monster and has a certain gourmet taste in anything that belongs to Katy (Katy's backpack was the lastest epicurian delight for Sam). I think it is because Katy isn't all that fond of Sam and Sam knows it. But, Sam is good for Mike. Just like my kittens really helped me this past year - a pet provides a young, innocent to love and cuddle and play with - it fills some of the holes in your soul left behind when you child dies.
We all just got back from Disney World in Florida. My mom and brother joined Mike, Katy and I for a week of fun, frivolity, Mickey and exhaustion. This year we didn't put any rocks around - I didn't want to carry them - but we did remember the rocks we placed there two years ago. There were a few sad, emotional days for me - one was riding the Finding Nemo ride - it was really cool and I think Eric would have liked it, but he never had a chance to see it. Either that or Eric would have turned his nose up at it because he'd be a 7th grader now, and that is what 7th grade boys do.
You know, there is a very odd dichotemy that happens in my mind when I think of Eric. On one hand, I will always remember him as an elementary age kid - same physical looks, same tastes - so for Christmas this year, I purchased a set of "Pokemon" cards for Eric. Because he loved them. However, I also know that if Eric was still here, he'd be in 7th grade and he's probably HATE Pokemon by now. He'd have a whole new set of interests that I have no idea even exist now. Once again, this weekend, I was at my friend, Erin's, house. Her boy, Jake, was getting ready for the middle school dance with 3 other boys Eric was in clas with. They are all so tall and filling out that I would never have recognized them. And they all have girlfriends and new loves and new sports and new clothes and new styles. So, how can I remember Eric the way he was, when he'd be someone completely different. Even if he was alive, he'd not be what I remember him to be. He is becoming a stranger. Life goes on, and I'm not a part of it. What an odd thing.
Thank goodness I still have Katy to bring me to my senses. I often romanticise the growing up process of Eric, but Katy reminds me, thru her own teenagery behaviors, that raising a kid is not all fun and games - there are power stuggles, hormonal phases, angst, anger, sadess, homework stress, etc etc. I love Katy dearly and in a way I'm glad she and I clash at times - makes me see the real side of it all. Eric was a difficult child and I have a feeling he'd have been a difficult preteen too. I smile as I say this.
Well, life does go on. I am nervous abou the whole new job thing, but realize it is just another phase of my life to look forward to. I'll meet new people and have a good time. I'm starting to get in shape again(yet again) - how many times have I said this? Well, this time, I joined Gold's Gym and I hired a personal trainer for 8 weeks. I'm feeling stronger and it is something that is helping me to keep the winter blues away. You just can't be seasonally depressed when you are panting and sweating and laughing at the gym. I look silly, I think, lifing weights next to the big guys with no necks who work as bouncers at the local clubs, but it gives me something to do on a weekend besides watch TV.
Well, that's about it.. snapshot of life. Once again, if you want to read more about my life and my goofyness, visit me at www.myspace.com/khayxie I blog on that one - it isn't always "g" rated, but there are lots of pics posted from our Disney trip. You need a myspace account and request to be my "friend" to see em tho.
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