This is a timeline of what's happened to Treasure. Chelsa, Treasure's mom, has approximate times when she couldn't remember exact dates. Last updated 3/5/08.
Fall 2003 When Treasure was about 4-5 we noticed a discoloration on her tongue. We thought she burned her tongue but she wasn't exhibiting any signs of pain from a burn. She was diagnosed with Geographic Tongue.
Early 2004 Within approximately 2 months the mark on her tongue started to rise. At that time I took her to her doctor who then called it a hemangioma. We were referred to and ENT doctor.
I saw 3 different doctors who all told me something different about her tumor (wrong diagnosis). It was then that I contacted (Children’s Hospital Los Angeles) CHLA and got her in to see Dr. Crockett. She was diagnosed with a hemangioma again.
This is where her insurance was changed to CCS by Blue Cross Healthy Families
We were told that these tumors usually go away and were on a watch phase for a while. During that period she was in Kindergarten and she began to experience flare ups. At that time Dr. Crockett put her on Steroids and the only thing that helped her pain was the Tylenol with codine.
Spring 2004 - Dr. Crockett then told me about an EXPERIMENTAL surgery that he had performed on only 12 patients and that there was a 50/50 chance of it working for Treasure. He stated that he had another patient who had something similar to Treasure and that he had the surgery.
Summer 2004 - Treasure had her first Surgery at the age of 5. The tumor seemed to get worse and she was in more pain 2 months after. The tumor began now to bleed. Dr. Crockett said that we could try again with the surgery. When I asked him how the other patient responded to the surgery, he said that his tumor had become smaller but that he had more than 1 treatment.
Early Fall 2004 - Treasure had her second surgery before she turned 6. After the 2 month waiting period she again began to have severe flareups with bleeding, swelling, choking and pain. At this point our only option to have the tumor excised which would remove most of her tongue (Based on a wrong diagnosis). The probably of speech could not be determined. I could not bring myself to accept this option. For the next year & 1/2 we delt with the flareups as they came. We had a routine. I would immediately call Dr. Crockett and he would immediately call in steroids to stop the swelling and pain medicine. Everytime I went to see him with a flare up, I felt like we were a lost cause and they he was simply waiting for me to make the decision which I could not make. I finally asked him if there was anything at all that could be done.
January 2006 - I told him that during my own research about hemangiomas that Treasure's was not doing any of the things that they were known to do (mom diagnosed what the Doctors didn’t). After careful thought he told me about a Dr. at USC Medical Center who performs a delicate surgery that is known to shrink tumors, Dr. Titlebaum.
Late January 2006We got our referral and off we went. Treasure was in second grade. After this doctor reviewed her MRI and file, he met with us and explained that due to the location of treasure's tumor and the size that he did not feel comfortable performing the surgery on her. The slightest thing could make her loose her entire tongue if anything went wrong during the surgery. At that point the tears came to my eyes and he told me about this world renowned Dr. in Colorado. Dr. Yakes. He spoke very highly of Dr. Yakes and said that he would be one that could save Treasure's tongue. He gave me Dr. Yakes' information and wrote it up in his report to Dr. Crockett.
January to May 2006 During that time Treasure's flare ups were getting worse. More swelling, more bleeding, more pain. I was afraid to sleep at night for fear that if she were on her pain medicine and the tumor bled that I would loose her. I kept her tight between two pillows on her side to prevent gagging. We kept our routine with Dr. Crockett.
May 2006 - I did not want to put her through another surgery with him because they seemed to be making it worse. I had my daughter take a picture of Treasure's tumor after being on steroids for days it was still huge. I emailed it to Dr. Yakes and received a phone call the next day telling me to bring my daughter that he was going to save her tongue. CCS said they would not pay for Dr. Yakes. We had to see a Dr. Dowd in San Francisco first. Dr. Dowd’s office would not set up a timely appointment and refused to see her when I called during a flare-up. Later he said he would need to convene a team of Doctors to review Treasure’s case.
I was very depressed and a friend of mine Cheryl and Treasure’s principal noticed. The entire school began to put out the word and raise money for Treasure. Then the whole school district and public and private schools througout the community began to help. We had people start fundraisers everywhere fromt the San Bernadino raceway to high schools in Pasadena and Temecula.
June 2006 – Dr. Dowd said they would look at her but would not be doing anything for some time while they put a team together. Treasure’s flare-ups were worse than ever. When we called during a bad flare up Dr. Dowd refused to adjust the appointment. The San Gabriel Valley Tribune printed a story in which the Dr. from USC said Treasure was at risk for death and the surgery offered by CCS was not a good option. We needed her treated and it was an emergency. We had a choice of risking my daughters life waiting for CCS to go through there protracted bureaucratic process or going to a Dr. that was well known for curing this type of tumor (Arteriovenous Malformation or AVM). We had raised enough for the first couple of surgeries with Dr. Yakes so we chose to schedule the first surgery near the end of June 2006.
June 26th – June 29th Treasure’s First Treatment with Dr. Yakes – Dr. Yakes had to go more slowly than he originally thought. He said he would have a better estimate on how many treatments Treasure would need in July when he saw how she did with this treatment. Total amount raised exceeds $100,000. Cost of First Treatment: Hospital: $20,000 Dr. Yakes: $7,271 ENT Dr.: $886 Anesthesiologist: $2,415 Pathology $6 Travel/Hotels/Suttles/Meals etc. $2,500 Total Cost of 1st Treatment: $33,079
July 2006 – Amount Raised goes to $108,000 Treasure had no flare-ups or pain in July. Her tongue is already looking better. We think we have enough for all of Treasure’s treatments so we stop fund raising.
July 24th to July 28th 2006 – Treasures second treatment. Dr. Yakes estimates that she will need up to 8 treatments. We know we don’t have enough money but feel we have enough to get us through until we meet with the state. We call CCS for a meeting and they will not see us until September 29, 2006 two months away.
Cost of 2nd Trip: Hospital: $15,000 Dr. Yakes: 8,178 ENT Dr. 600 Anesthesiologist: $655 Travel/Hotel/Shuttles/Food/etc. $2,500 Total Cost of 2nd Trip: $26,943
Treasure continues to have no flare-ups or pain. She is doing much better.
August 22nd- 25th Treasure’s Third Treatment: Hospital: $15,000 Dr. Yakes: 7,892 Anesthesiologist: $1,035 Travel/Hotel/Shuttles/Food/etc. $2,151 Total Cost of 3rd Trip: $26,078
Treasure continues to have no flare-ups or pain. She is doing much better.
Deposits in September from Donations: $2,170 – Total Donations through Sept: $110,250
September 25th-28th Treasures Fourth Treatment: Hospital: $15,000 Dr. Yakes: 8,000 (approx – Not billed yet) ENT Dr.: 1,000 (approx – Not billed yet) Anesthesiologist: $1,000 (approx – Not billed yet) Travel/Hotel/Shuttles/Food/etc. $1,500 (less because Treasure’s sister couldn’t go and Is was fewer days at school) Total Cost of 4th Trip: $26,500
Total Expenses to September: $112,600 – Refund from hospital $ 4,559.18 = 108,041
September 29th – We visited with Dr. Bloch at CCS - They refuse to approve Dr. Yakes or pay for any past treatments. They will not schedule any appointment for Treasure until January. By this time her cure will already be completed if we keep her surgeries on schedule. If we wait, her tumor is likely to return. Dr. Bloch seemed hopeful that Treasure’s treatments don’t work and disappointed that she was being cured. I don’t understand the demeanor of these CCS people at all.
November 3rd - Went to CCS in San Francisco - Several doctors saw Treasure and recommended we do nothing and watch since she's doing so much better. See the tab at the right for the 11/9 CCS letter to Chelsa with explanations of the Dr. Double Speak.
November 9th - 5th Trip to Dr. Yakes Hospital - $12,006 Dr. Yakes - $9,318 Travel Expenses - $2,276.00 Anesthesiologist - Didn't pay yet Total Expense - 24,800 Expenses to date - $131,631
December 18th trip to Dr. Yakes Hospital - $17.012 included MRI on another day. Dr. Yakes - $8,852 Anesthesiologist - $1,898 (two months with discount) Travel - $1,900 Travel Expenses: $29,662 Expenses to date: $161,293
Amount paid by Blue Cross for this cure - $0.00 Amount paid by CCS for this cure - $0.00
Amount paid by the good people of Covina, Glendora, California and Unitied States with individual contributions - $161,293
February 2007 LAST TREATMENT:
Hospital - $13,000.00 Dr. Yakes -- 8,852.00 Anesthesiologist - 2012.00 ENT Dr. - DONATED TIME Travel - $1,397.50 >Total for Trip: 25263.11 Website - 2 Years $480.00 TOTAL: $187,036.11 AMOUNT STILL OWED ON PERSONAL LOAN - $14,000
NOW ONE YEAR LATER - The AVM has not reappeared. She last had an MRI in October and Dr. Yakes gave her a clean bill of health. She will be having it checked annually for the next several years because there is a small chance of it showing up again as Treasure goes through puberty. We are eternally grateful to the community for their support of Treasure.
