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March 2003

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).

Thank you to everyone for your support!

********

LOOK! Eric's Make-A-Wish story!
Eric's Wish

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

Wednesday, September 16, 2009 8:31 AM CDT

Hi everyone...

It have been well over a year since I last updated. I hadn't really thought about this page in a very long time. First I switched over to Myspace and now Facebook, and even those I don't blog on anymore. I notice that I really stopped when I returned to work. Work really is such a drain on me, mentally. The last thing I want to do after a day at work is log on and write more. So, I guess I don't.

Lots of stuff has happened in the last 1 1/2 years...
Job: I am back at 3M, back in Division Engineering. No, it isn't what I really love doing, but I am pretty good an it and it pays the bills. It isn't really torture... I mean, I work with some very nice folks and I can basically set my own hours and have great benefits. But there are times when I think I should be doing MORE... you know? With that in mind, I applied for a different job @ 3M - Microbiologist. I don't want to jinx it, but it sounds pretty cool. We'll see.

Relationship: I'm seeing a really nice guy, Scott. He's been in my life for about 1 1/2 years now. I met him at the gym and we hit it off. He's a very calm person and seems to really care about me, in spite of my moods and quirky background and our age difference (he's in his 20's, I'm now 41). But he's been good for me... I've learned some new things (golf, better eating), and he's learned some new things (school can be fun, spices make food better). So, it is working for us!

Kid: Katy is doing really well in High School and she's grown into a beautiful young lady. She is now a Junior and is prepping for the ACT/SAT and learning how to drive. Some things don't change, tho... she still plays World of Warcraft on occasion and she still doesn't put dishes in the dishwasher unless I direct her to. (She did do her own laundry this week, tho.. there is hope!) Seriously, she can be fun to be with and I'm really glad she's in my life.

Mike: Not exactly sure what all Mike is up to these days. We are friendly, but don't hang out a lot. He's still at 3M and seems to be doing well - new products.. lots of trips to Menomonie and fewer trips to Asia, which is nice. He has a new dog - Sam - a Yellow Lab who is very sweet, if very energetic!

Sydney: Sydney, our dog of many many years, passed away last March. She was 16 1/2 years old! In the end, she slept a lot and was probably feeling some pain as she was very stiff. She was nearly deaf and blind, but if you let her outside, she's still hop around and be excited! She was a very good dog and we miss her.

Cats: I still have Patches and Annie, the two cats we had when Eric was alive. I have also acquired two new cats - Panda and Rogue... brothers we adopted in May 2007. Rogues is a very quiet cat, but I think Panda contains a piece of Eric's spirit... he is very very sweet and social... he "talks" to us all the time and wants to be around people constantly.. but he definitely has his naughty moments when he races around the house, attacks the other cats in play (much to the annoyance of the others) and claws at carpets, curtains and pant-legs. But he is so sweet-nature d, that we forgive him!

Great-Grandparents: Since Eric died, he has been joined in heaven by a number of his great-grandparents. Mike's Gramma Wanda and his other Gramma O'Brien have both passed away. (Gramma O'Brien was 105!) My Gramma Eurich and my Grandpa Goffeney (Grampy) have also passed on. I guess none of these are unexpected... it is what happens when we age, huh?

Anyway, I guess I had better get back to work now. I'm hanging in there and life is fine.

Happy 14th Birthday, Eric!

Love,
Mom (Kasey)

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E-mail Author: kcrueg@comcast.net

 
 

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