Sunday, January 18, 2009

Lauren made it past August and into the fall and to her 18th birthday on December 9th…one of her goals.

So here we are into January 2009. Lauren made it past August and into the fall and to her 18th birthday on December 9th…one of her goals. She struggled terribly to keep down the experimental drugs that she was given. Her nausea was terrible. She has lost about 25 pounds since her October surgery. Her recent scans show that the tumors have not started to re-grow in her abdominal cavity two months post-surgery. This is very good news! Nor have her lung tumors increased. Her liver, however, seems to have gotten worse with about 1/3 of it compromised and non-functioning because of tumors. She is now taking the next two drugs in her experimental treatment regimen. Her nausea has decreased greatly, but now she is experiencing a lot of pain, sometimes excruciating.

Lauren entered the hospital on Sunday, January 4, 2009 due to extreme pain.

Lauren entered the hospital on Sunday, January 4, 2009 (her Grampa Glover's birthday) due to extreme pain. She has been there ever since. She has experienced tremendous pain this past week and is on a lot of pain meds. They make her delirious much of the time. They believe that Lauren had a bacterial infection that is now gone. They also believe that her enlarged liver is pressing on a nerve bundle and causing the extreme pain she is experiencing. They are working daily to try and find a way to manage her pain. It was also found that the IV fluids have not been going into her veins, but into her abdomen and lungs. Her abdomen is swollen to the size of a basketball and very hard. She is having difficulty breathing. However, she has begun taking meds that will re-direct the fluid to her veins which need to stay hydrated. In speaking with my brother today, that med appears to be working. Through all of this she continues to take her next round of experimental drugs.

We celebrated Christmas on January 3rd

We celebrated Christmas on January 3rd with Lauren at her Dad's house in Illinois. She opened her gifts laying in bed. She's cute as a bug in all of our Christmas photos. In fact, her Dad (my brother) calls her 'buggy,' short for ladybug. I call her Sweet Tart because she is. She slept a lot that day, but when a lot of visiting friends and family left, she wrapped her little body in a warm blanket and wandered downstairs to visit. It was nice.

Lauren is a fighter, always has been…and she wants to live.

Lauren has always been very strong and persevering through all of her lifelong surgeries, and chemo and radiation therapies, but for the first time, she has bouts of despondency. Her family and her medical team feel her incredibly positive attitude has kept her going all of these years. In fact, she keeps all of us going! She is a tremendous fighter and a very positive person.








Lauren and her Dad.

A message sent by Lauren a week after her surgery

Below is a text message that Lauren sent to me about a week after her surgery telling me of her frightening experience.

hey there you! long time no talk. my phone was toasted, guess they have had
quite a few recalls on the blackberries bc of the ear pieces not working. i have
been so pooped lately from surgery and all. that day was quite an intense
day!!.. one of the most intense of my life. billmyere, the surgeon, told me that
she wasnt sure if she could even do the surgery on me bc of where the tumor was
lying.but the only way for her to know was to go in and look- meaning if she
couldnt she would sew me up and i would morethan likely bleed to death
-internally. 5 minutes to make the decision.. horrible! the room was full of
tears and i asked them what they all thought i should do. some people couldnt
say, but doing the surgery ruled out, so i prayed to God and that's what i did.
and next thing you know i am waking up, being told that a 5lb tumor, shaped like
a football was taken out of my belly and was also lying down in my chest cavity
too. the news was wonderful to know that i had made it! oh, i thanked God! do
every day :)

After her surgery, a piece of her tumor was overnighted to a lab in Long Beach, California that tested 16 different chemotherapy drugs on the tumor to see if any worked. Seven drugs were found that had some effect on the tumor. We were thrilled. Lauren's tumors have become so resistant to chemotherapy that we were worried that none might be found. These are all very experimental drugs, and honestly, the one that worked the best is commercially unavailable in the United States…..very discouraging.

On October 20, 2008, Lauren underwent abdominal surgery to remove a tumor that had become massive and was causing extreme pain.

At 12:00 noon, my Mom called very upset and said that Lauren had just gone into surgery and that she might die during surgery. This was very hard to hear. Right before Lauren was to go into surgery that morning, the surgeon reviewed the most recent scans and then came into her hospital room and told her mother and father (my brother), that the tumor was very large and had grown behind her kidney and all the way up her back and attached itself to her aorta. The surgeon said that there was a chance that Lauren would bleed to death during surgery, and that she would not be able to save her. Of course, this was terrifying. They then talked to Lauren about the situation. The surgeon said that this was a difficult decision to make so quickly and offered to reschedule the surgery to the following week. My brother said that they did not have that much time. Lauren called for a vote. The surgeon did not vote; Lauren's mother voted no, and everybody else (Lauren, my brother, Lauren's boyfriend, Lauren's stepmother, Lauren's brother, the oncologist and the social worker) voted yes. So……Lauren played a few games of hangman with her brother and father, kissed and hugged everybody, and rolled herself down the hall in her wheelchair and into the operating room. She is such an incredibly brave person.

Two hours into the surgery a nurse came out and told everyone that the tumor had been unwrapped from the front and the sides of the kidney, and the surgeon was now beginning to work around the back side and up to the aorta…..the part that she was afraid of. A few hours later, they let everyone know that the tumor had been successfully removed. It had grown all the way up to the aorta and was pressed against it but had not yet attached! Miraculous, really!! The tumor was as large as a football and weighed 5 pounds. The surgeon said that it would have killed many other people, but Lauren has more room internally because she has fewer organs. What if they had waited a week? Chances are that the tumor might have attached. Obviously, the right decision was made…..God was watching out for Lauren.
August 25, 2008 was my brother Glenn's birthday. On that day, Lauren started feeling badly.

The next day was worse, and she went to the emergency room in her little hometown of Logansport, Indiana. On Wednesday, August 27th, she was admitted to Riley's. A scan revealed the abdominal cavity tumor had grown another 50% since her last scan on August 12th, and a new tumor was seen. At that time, a staff member stated that she felt she had only about 4 weeks to live. We had been looking into other treatment options and found the University of Michigan through clinicaltrials.gov. They were performing a clinical trial in which children with Wilms, but in remission, could receive a bone marrow transplant and an experimental cancer vaccine. In the hopes of entering the trial, Lauren was given near-lethal doses of two chemotherapy drugs. She did not fare well. For the first time, chemotherapy really put her down. She ended up with hemorrhagic cystitis…she could not urinate and ended up with huge clots in her bladder that had to be forced out. She was in extreme pain. In the end, scans revealed that this massive dose of chemotherapy had not worked……and had damaged her bladder. Needless to say, Lauren did not qualify for the U of M clinical trial.

On the first day of her senior year, cancer diagnosed again

On August 12, 2008, the first day of her senior year, she was once again diagnosed with cancer. It was found in her right lung, her liver, her abdomen and near her rectum. At that time, a staff member at Riley's stated that she only had about about 6-8 weeks to live and recommended hospice.
Then in June 2007, Lauren felt pain in her pelvic region and was bleeding. She was diagnosed with a vaginal mass….again Wilms. On what was to have been the first day of her Junior year, Lauren underwent a total hysterectomy on August 14, 2007. Doctors removed her uterus, fallopian tubes, ovaries and a portion of vaginal sidewall. She again underwent radiation treatments. In September 2007, her doctors felt that she had had a complete response to therapy and again showed no evidence of disease.

Wilms reappears after 10 years in remission


In June 2006, after 10 years in remission and at the age of 15, Lauren was again diagnosed with Wilms Disease. Her cancer came back with a vengeance. This was a tremendous shock to our family and to the medical team at Riley's Hospital for Children who had treated her as a child. After remission, recurrence is very rare for this type of cancer. She and her doctors are in a tremendous battle to fight this form of late-stage, childhood kidney cancer in a person of her age.

After almost a year of chemotherapy, radiation and surgical treatments, the cancer seemed to have been eliminated from both lobes of her lungs, both lobes of her liver, her right kidney, and from a space between her spine and lungs. Surgery removed a cancerous left kidney and spleen. In March 2007, there was no evidence of disease found in scans of her abdomen, pelvis, and chest.

But at the age of three, a large mass was found in her left kidney

But at the age of three, a large mass was found in her left kidney. She underwent further chemotherapy treatment and had a portion of her left kidney removed. In June 1994, at the age of five, she went into remission. She had ultrasounds every three months until the age of 10, with no recurrences.

Diagnosed with cancer at 13 months old

In January 1992, at 13 months old, Lauren was diagnosed at Riley's Hospital for Children (Indianapolis) with Wilms' Tumor, an early childhood kidney cancer. Lauren was an exceptionally rare case as the tumors were in both kidneys. After a year of chemotherapy, Lauren appeared to be doing well.