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Jan 25, 2017 Latest post:
Oct 19, 2017
My sweet daughter Tessa's story really starts back in November of 2015. Tessa was 6 years old at that time. At that time, she began having some pain in her wrist that seemed to be increasing. After a trip to the ER and then to the Pediatric Orthopedic Surgeon, Dr. Abzug (you will hear his name a lot because we absolutely love him and couldn't live without him!), we believed she had some type of benign mass - most probably a cyst or giant open cell tumor - in her wrist, and we scheduled a pretty minor outpatient surgery for approximately 2 and a half weeks later. However, over the course of the next week, the pain increased to being so bad, she was screaming in pain as soon as the Advil began to wear off and was taking that Advil around the clock. It came to a head just a week after our appointment with Dr. Abzug when her wrist began to swell and get red which just didn't seem consistent with our diagnosis. After consulting with Dr. Abzug, he agreed that this didn't seem right and that my instinct to take her to the ER was a good idea. We went to Upper Chesapeake Medical Center in Bel Air. After lab work showed her CPR (an inflammation marker) was elevated and an MRI indicated infection, she was transported via ambulance to University of Maryland Medical Center for surgery the following morning. She had her first surgery on Thanksgiving morning of 2015. The results of this surgery were disheartening to say the least. She did in fact have a very serious infection, to the point that the bacteria ate a hole in her growth plate. It was very odd though because up to that point, she had no signs of infection other than the swelling and the elevated CPR. Even her white blood cells were in the normal range, and she had never had a fever up to that point. She was admitted to wait for the culture from her surgery to possibly grow to identify the correct antibiotics and to await the results of a bone biopsy. Unfortunately, while waiting, she developed a fever approximately 36 hours later. These fevers continued for 2 weeks! The antibiotics did not seem to be working properly, and because nothing was growing in culture, it was a bit of a guessing game. She also in the next 9 days following her surgery had to have 2 more surgeries to drain the wrist again with the third one resulting in them leaving a drain in her arm to help any residual bacteria exit her body. While trying to identify the correct bacteria, the biopsy showed some granulomas, which would later become important, but we would never know it then. Because of these, they added a different type of antibiotic to her treatment to cover both gram positive and gram negative bacteria. After much time and receiving antibiotics through a PICC line, the fevers subsided, and she was released and ultimately diagnosed with Osteomyelitis (bone infection). Unfortunately, they returned 5 days later, and she was readmitted to the hospital for 5 more days. Fortunately, that round of fevers and rash were determined to be reactions to the drugs, and she came home 5 days before Christmas. She continued the antibiotics orally after her release from the hospital and was eventually released from treatment. Over the next few months, she suffered several infections which we attributed to the super strong antibiotics destroying her immune system and good bacteria too. After June of 2016, she was completely healthy until October of 2016. She played travel soccer and was very healthy! She was loving playing soccer and being a normal 7 year old. Even better was that we were regularly seeing Dr. Abzug to follow up on her wrist and despite his concern that her arm would have trouble growing due to the damage to the growth plate, it was somehow miraculously growing!! In October, she began having migraines every day, and some were debilitating to the point that she couldn't really do anything and would even want to leave soccer practice which she loved! We saw a neurologist at Johns Hopkins, and they eventually prescribed her some preventative medicine after a clear MRI. The medicine seemed to help some, but she would still have occasional migraines. Things really took a turn in December of 2016. Unfortunately, things really changed on December 27. We took a trip to NYC (as an early birthday party for Tessa as she was dying to go and had an amazing time), but when we woke up on that first full day there, she complained that her ankle hurt. I didn't think anything of it at the time, but this pain followed a very similar track as her wrist. During the first week, she complained just occasionally that her ankle hurt. The following week, she was complaining every single day and multiple times a day on a lot of days including first thing in the morning every day. I started to grow concerned about what was wrong with her ankle. She hadn't had a soccer game in 2 weeks, so I didn't believe there was any cause there. Finally, she had a soccer game and was complaining all game to the point of not wanting to play and asking to go to the doctor. As much as she LOVES soccer, that's when I suspected there was really a problem, which was confirmed later that night when her ankle swelled out of nowhere. I texted Dr. Abzug to ask him where I should take her to get it looked at (him or her pediatrician), and he answered me very quickly even though he was on vacation in Hawaii! He told me the emergency room and at University of Maryland just in case because of the possibility of the recurrence of the Osteomyelitis. So we followed his instructions and went the following day, Sunday, January 8, 2017. They did X-rays and lab work, and all was normal. They put her in a boot with directions to follow up when Dr. Abzug returned on January 18. They said we could try to take her out of the boot if she wore it for a few days and was hurting less. She wore the boot through Thursday. On Friday, we thought we would give it a shot without the boot. She went to school and went to the Father/Daughter Dance at school with her dad. By the time, she came home, she was having trouble walking, and it was very swollen again. We immediately went back to the boot. However, even with the boot the next day, she could not walk at all and was crying and moaning in pain. I contacted Dr. Abzug again and sought his advice. Still on vacation, he was still very much there for us. When he told us we should go back to the ER and said he would get an MRI done to find out what was going on, we immediately went on Sunday, January 15. Lab work was still clear, but the MRI still showed as infection. Dr. Abzug texted me to tell me before the doctors even got to the room to let me know. He arranged for his partner Dr. Luerrman to do the surgery, as clearly an infection couldn't wait 3 days for him to get back. Dr. Luerrman was equally wonderful and did the surgery the following morning. As with her wrist, he again saw puss on the bone. It was removed for culture and again a bone biopsy was conducted. We waited for days for these results. The Infectious Disease (ID) doctors reported back that nothing was growing in culture (after 2 days) and due to her lack of fever this time and no CRP or white blood cell correlation, they were concerned this wasn't infection and that the granulomas which were again present could indicate a rare histiocytic disorder. They requested that pathology perform the staining required on the biopsy to test for those particular disorders. Finally, the ID doctors came back and told us that the pathologist believes that Tessa has an extremely rare histiocytic disease called Erdheim Chester Disease. This disease has 500 or less documented diagnoses, and only 5 ever pediatric diagnoses. The latest research indicates that the World Health Organization identifies this as a histiocytic neoplasm, which is a type of blood cancer. The Hemotology/Oncology (Hem/Onc) doctor that we saw at University of Maryland indicated that there is some disagreement among doctors over that because histiocytic disorders fall between benign and malignant and therefore, what they should be classified as. Many people have died from this disease, however, as the histiocytes in the body can collect on organs and tissues. It is also very painful. Tessa is currently recovering from her surgery as we await her final pet scan and skeletal survey results as well as the final diagnosis and treatment plan after her case is presented at tumor board on Thursday. We will also be seeking a second opinion. It is heartbreaking to use words like cancer, tumor board, and chemotherapy when referring to your 7 year old (almost 8) daughter. We are still holding out hope that somehow this is wrong, and this will change, but at the same time, we are working hard to ensure a proper treatment plan for sweet Tessa. We are so fortunate to have a lot of people already on Team Tessa, and we could not be more grateful for the outpouring of love and support that we have gotten from the people in our lives. I have posted regular updates on FB for people to see, and it has been helpful for myself to blog and post while it also helps others to know how Tessa is doing. Because of that, I decided to start a CaringBridge site to help me with my updating and blog posts. Thanks for reading!