Rovyn's Story: One Child From Many Receives Help

We first met Rovyn Gudiel in April of 2007. He was referred to us by Dr. Mynor Vivas of Guatemala. The fact that we got this referral is a miracle. It all came about when an adoption fell through, and we then found another child for the family through a different agency. That new child's pediatrician in Guatemala was Dr. Vivas.

We discussed CAMI’s work and mission at the time of the child's visit, and thought nothing more of it. Going back several weeks later, Dr. Vivas was excited to see us and stated that he had been trying to figure out which child we came in with. He wanted to refer some children to the CAMI program who were patients in the Hematology Oncology Unit at San Juan de Dios Hospital in Guatemala City. We agreed to at least look at the referrals, with the caveat that it would be very hard to get any of them treatment in the United States.  Dr. Vivas referred four children.  Rovyn and his mother came to CAMI’s Guatemalan office immediately, even though they live in a remote area of Guatemala near the ocean.

When we first saw Rovyn, his spirit and smile took over our hearts. He is a precious young boy who wants so much to beat his brain cancer. His father was killed two years ago in a trucking accident which has left the family devastated emotionally and financially. In addition to his mother, Rovyn has a six year old sister at home, Rachelle.

CAMI retrieved more medical records and began the long, arduous task of gathering everything that was needed to make a referral to the U.S. for Rovyn. His initial diagnosis from Guatemala was a pineal gland tumor of the brain. Once we decide to bring any patient to the US, there are numerous documents to gather, tricky embassy hurdles to leap, and funding to be raised.

When Rovyn's records arrived in the US, it was determined that the case could not be performed in Bowling Green, KY by the CAMI Neurosurgeon Dr. Schwank because we do not have a comprehensive pediatric intensive care unit.

Then began the search for a Pediatric Neurosurgeon and a Hospital to review Rovyn's paperwork and see if he could be accepted for free treatment. We were finally able to get in touch with Dr. Frederick Boop at Le Bonheur Children's Medical Center in Memphis. We were referred to him by a friend of Dr. Schwank's, Dr. Leland Albright.  Dr. Boop agreed to review the file and was eventually able to secure the $50,000 initial surgery to remove the tumor from the center of Rovyn’s brain at Le Bonheur Hospital.

In order for Rovyn and his mother to travel to The States, they needed passports and visas to enter the US. Acquiring passports was one of the first things that we did, however getting extended stay visas for medical treatment required lots of letters and confirmation from all the physicians and hospitals that no government money would be used in treating Rovyn. We were so happy when we heard that Rovyn and his mother had their visas!

The next obstacle was to get tickets donated for them to travel. We put in a request to American Airlines and were waiting for their response when we heard from Dr. Boop that Rovyn was to be at the Hospital on August 9, 2007 for surgery on August 10! That gave us no hope of getting the American Airlines tickets in time, so we began asking for donations for their plane travel. Dr. and Mrs. William Laughlin of Morgantown, Mr. and Mrs. Mynor Ordonez of Lexington, and Mr. Ray Villa of Nashville all responded with enough money to get both tickets and have a little left over for their general expenses. Thanks so much to all of you! And thanks also to American Airlines who came through with tickets after the fact. Hopefully, we will be able to use them in the future for Rovyn’s necessary follow up appointments.

Rovyn Gudiel and his mother, Romelia Carrera, arrived at Atlanta's Hartsfield Airport on August 7. They were picked up by Dana Simmons and Carmen Carcamo, two of our CAMI volunteers in Kentucky. After a long delay flying to Atlanta they still had to ride another five hours to get to Bowling Green. Once in Kentucky they were able to spend one day and two nights before leaving to make the trip down to the hospital in Memphis, Tennessee on Thursday.

Traveling to LeBonheur Children's Medical Center takes over four hours from Bowling Green. The trip was made by Rovyn, his mom, Judy Schwank and Carmen Carcamo. Everyone at Le Bonheur was just wonderful.   We met so many nurses, doctors and staff that we could never name them all or sing their praises enough to adequately thank them for their help and kindness. Rovyn went to surgery on August 10 and we were expecting it to take many hours, as his brain was to be split down the corpus collosum.  It was a very risky surgery.  Dr. Boop returned to the waiting room after several hours and said that they could not take the tumor out, but had been able to biopsy it. They did not know what kind of tumor it was, and it would take a couple weeks to find out. Rovyn was very disappointed when he woke up, however he recovered from the initial surgery quickly.  Rovyn spent the next ten days in the hospital, while we all waited to learn what was actually growing in his brain. It was a very, very long wait. We were also worried because if the tumor was not resectable, it meant he needed to have either chemotherapy or radiation therapy, neither of which was promised to us at the time Rovyn was accepted to LeBonheur.

Rovyn and his mother came back to Bowling Green to wait for news after his discharge. In the meantime, CAMI had been researching other options for possible radiation therapy for Rovyn. After a few more days of waiting, we finally had his diagnosis: Germinoma. This particular type of tumor is highly treatable with radiation.

Now began the vigil of waiting to see if St. Jude Children's Research Hospital in Memphis would take him. We had been told that the possibility was very low. That is not unusual at this time of year because most hospitals have exhausted their funds for charity and especially international charity cases by this late fiscal date. We could only hope, pray and pray some more that Germinoma would be a type of tumor that was being currently researched at St. Jude's and would meet the criteria for admission.  More waiting.  And then finally we received the call....Rovyn was accepted at St. Jude!! We found out on the Friday before Labor Day.

Traveling to Memphis again, the road seemed even longer, but the outlook seemed better. Rovyn, Romelia, Judy Schwank and Katherine Park (a new volunteer for CAMI this year) traveled on Labor Day to admit him that evening. We arrived at St. Jude where you can find the world's friendliest people at about 8 p.m. The first thing we noticed was that there were several children being admitted at the same time who obviously were not new cancer patients. One mother came over and told us to not worry; we were in the "best of hands" at St. Jude. That little bit of encouragement helped so much. Once we were registered and Rovyn got his patient number; one he has to memorize in English and repeat often to the myriad nurses and doctors, we were given a tour of St. Jude and we were briefed on the next day’s busy schedule.  By 11pm we all collapsed at the Grizzlies House.

The next morning we checked in at the Radiation Oncology Clinic. Everyone was great with Rovyn and his mother, both of whom do not speak any English.  Dr. Andrew Chang is a resident in Radiation Oncology who was the first physician to meet Rovyn and went to great lengths to explain what would be happening to him.  It is a lot to take in for such a young person, but Rovyn is mature beyond his years, very brave, and still can make a room of English speaking Oncologists laugh. The risks, radiation side effects, expectations and very elaborate 7 week schedule were well explained to the family.  Katie Park and Judy had to leave to return to Bowling Green to continue working on the other CAMI stateside patients and Romelia and Rovyn were on their own at St. Jude.

The week that followed would include a MRI, brain mapping, lots of blood tests, x-rays, occupational therapy evaluations, eye exams, CAT scans, and much much more.

Sept. 11, 2007
Today we received a call from Romelia. Rovyn has been feeling poorly since a lumbar spinal tap was performed on Friday to check for spinal metastasis. He was admitted to the hospital due to his illness but is now ready to return back to the hospital’s Grizzlies House tonight. They are hoping to move to the long-term stay Memphis Ronald McDonald House tomorrow. After that, Rovyn will begin the six weeks of radiation therapy on this head and spine. Romelia told us her understanding is that he does not have any metastatic disease and will not need chemotherapy at this time.

Having been informed that the second and third weeks of radiation therapy will be the worst, we are all hoping that Rovyn will be able to keep his spirits up for what is to come.  We all wish him the best of luck.

Sept. 13, 2007

Romelia and Rovyn are now at the Memphis Ronald McDonald House. He starts radiation therapy tomorrow.

October 5, 2007

Once Rovyn and Romelia leave St. Jude in Memphis, they will come to Kentucky for an undetermined amount of time while he recuperates. Once he has fully recuperated and has been released by St. Jude, they will return to Los Amates, Guatemala. This is a very hot and coastal area. So far in their lives, Rovyn and Romelia have not needed any warm clothes. Now, since we know they could be here several weeks to months more, we will need clothing for them. Rovyn is a very thin boy, but fairly tall. He will need a size 10-12 Boys pants SLIM. Romelia will need clothing in a 12 Misses size. Because they will have little need of winter clothing when they go home, we need only a couple of nice outfits for church, and some jogging suits for warmth in the chilly hospitals as well as for the Kentucky winter. Sweaters and possibly a coat each would also be great! If you are following this story, and would like to contribute either clothing or a gift card for them to Target, or Walmart, please send it to the main office in Bowling Green, KY. We will see that all money, gift cards, or clothing that comes in goes directly to them. Again, thank you to all who have helped with this child's care and trip. So far it is a great success.