Mayleigh Kyndall Workman was born on December 14th 1995. From the very beginning, Mayleigh has been one of the sweetest, kindest most beautiful souls I have ever met. I am not just saying that because she is my daughter but because she has always gone out of her way to make others feel good about themselves and offer the shirt off her back as if she only had one to give.
Mayleigh graduated from North Bend High School in 2014 and began college courses at SOCC in Coos Bay Oregon. After a year she realized it wasn't her cup of tea and joined the work force along with her fiance.
In mid April, Mayleigh began working at Safeway as a cake decorator but within a short time she began having symptoms of difficulty breathing and some swelling in her cheeks. On April 18th, she went to the walk in clinic where they gave her some prednisone to reduce the swelling but it didn't seem to do anything. They also did some blood work. On April 26th she then went back to the walk in clinic in which they did an ultrasound and more blood work. After waiting a week for results they said she was normal and that they couldn't find anything wrong with her.
After another week of waiting the swelling continued. She also started experiencing swelling on the pallet of her mouth and a noticeable lesion that made us encourage her to visit the dentist. Mom had dental issues at a time that presented similar symptoms so it was worth a shot to have it inspected.
In the first week of May, she then went to South Coast Family Dentistry where they pretty much blew her off and said that her teeth looked fine and there wasn't anything they could do. No x-ray was done and he told her it was either a salivary gland or blood vessel and not to worry about it.
May 13th: After this experience my wife took the reins and began getting her an appointment with another dentist who had better equipment and willing to do a CT scan in clinic. (Dr. O'brien: whom is an outstanding person as well as dentist and we can't thank him enough for getting the ball rolling for us.) At this time she had noticed increased swelling in the parotid, a marble sized lump in her cheek as well as some nodules forming on the top of her head. They were red and sore looking and did not make sense to us nor to Dr. O'brien. The dentist saw her condition and was immediately concerned. More so than anyone she had seen so far. This test result was enough to prompt the doctor to get her into an ENT immediately and she was sent to NBMC to see Dr. Shimotakahara that same day.
On our first visit with Shimotakahara, he gave her a fine needle aspiration biopsy in her swollen parotid glands, more blood work, a hemoglobin A1C to rule out diabetes as well as some other tests to rule out other autoimmune diseases. At this time, both glands were swollen beyond anything I had ever seen and was noticeable to everyone. We would have to wait a week for the results which came back inconclusive.
May 19th: He then did a core needle biopsy in which he inserted a very large needle into her cheeks and proceeded to stick her 4 times before giving up to get another needle. After 45 minutes of waiting for him to return, he came back with the same type of needle and said he would just have to use it. He then snipped her another 4 or 5 more times until he finally was able to get a sample. This was aggravating to say the least and we were beginning to lose patients with him. Not only did he seem to not know how to do this procedure, but his bed side manners were horrible. Mom and I as well as fiance were all on pins and needles waiting for the fine needle results, praying it wasn't cancer, and he just turned his back to us as he walked in and when asked he just said "it was inconclusive" and that he would "have to do a different biopsy". I'm sure he's been in these scenarios before but it was unbelievable that he would be so inconsiderate considering we all were fearing the worst; and there was no assurance that it wasn't the C word. Dr. Shimo has done many great things for many people and I do not hold any ill will towards him but we definitely didn't get warm fuzzies from his communication and we were getting nowhere fast. We were all in agreeance that it was time to move on and get a new set of eyes on this.
After this experience we were told to wait another week and we thought it was time to find another solution and so our PC doctor told us we should visit Dr. Hurbis (another ENT). On May 24th, my wife and daughter visited him for the first time where he did a ton more blood work. He also looked down her airway as she continued to have difficulty breathing and he assured her that her windpipe was clear. He would have us wait to be seen again where he would then have the results of the blood tests and hopefully more answers.
June 2nd: After waiting another week for all these results, the biopsy Shimotakahara did came back again inconclusive and all the new blood work showed was an elevated Microglobulin level 2 which is a tumor marker. It was only slightly elevated but it was enough to throw him into confusion. He mentioned possible multiple myeloma, which came to a shock to us as we had all along started to believe it was not cancer. This would prove contradictory and we were immediately given our first scare that it may be worse than anticipated. My wife mentioned another round of prednisone as a possible solution for her as her breathing was getting extremely bad and her voice had begun to change due to the pressure on her windpipe. He agreed and started a taper does from 40mg to 10mg over a 10 day period. Little did we know what was actually causing this breathing issue would be bigger than we would ever imagine...
Dr. Hurbis attempted to get us an appointment with another ENT at OHSU and we were scheduled for June 14th which was a much longer wait than we wanted to have but thankfully he admitted he was stumped and wanted to put it into the hands of people who see these kinds of things on a more frequent basis. We were very thankful for his honesty and his willing to get things moving faster for us.
While waiting for the appointment, the prednisone started doing it's wonders and her swelling began to diminish everywhere. Her head nodules began to drop back down, her swollen parotid glands went way down and she was able to breathe allot better. This was very encouraging being that tumors would not normally shrink from prednisone, (so we thought) so it reassured us that it most likely was just inflammation. This gave us relief though since we still had over a week to wait for her OHSU appointment.
In the meantime, we had scheduled her for an appointment with our PC doctor as she didn't currently have one. This appointment was scheduled for June 10th (graduation day for NBHS).
Mayleigh went in and was immediately given for the first time a physical exam where he had her lay down and he simply used his hands to feel different parts of her body outside of the head region where all the issues were. He was feeling around her lower abdomen area when he felt a mass that was very concerning to him. He immediately told her to go to Bay Area Hospital to get a CT done of her chest and lower region.
At 6:30 pm on June 10th, we were informed by our PC doctor that he was 90 percent sure she had lymphoma. His wife had battled and beat lymphoma twice and we were encouraged that it can be defeated and that they were going to try and get us into a doctor in Eugene to do a biopsy of the thymus gland where a tumor resided that was the culprit of all her breathing issues. The thymus rests above the heart and due to the size it had began putting pressure on her trachea. This would be a risky procedure and therefore they wanted a neurovascular doctor to do the procedure and someone they knew could do the job right. She also showed signs of tumors in her lower abdomen as well as her armpit.
Since we knew the results were pointing to lymphoma and they had scheduled the biopsy for the following Wednesday (June 15th), we cancelled with the ENT at OHSU for Tuesday (14th) since we new our ultimate goal was to now see an oncologist. This would come back to haunt us as we were so close to being where we needed to be; but little did we know things would continue to unravel for us.
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