It began innocent enough at the beginning of the summer. Madison had a constant sinus infection. She could not get into see our regular doctor for more than a month because he was on vacation. In the meantime, she went to CentraCare 3 times and each time they gave her an antibiotic and said she had a sinus infection. Nothing seemed to help. She was also suffering from migraines. One Saturday I took her to the ER because the migraines were so bad. They said that since it had not been diagnosed by a neurologist then it was not a migraine but an acute headache. They gave her glorified Tylenol.
On July 17, she finally got into the regular doctor and he confirmed that it was a sinus infection. He also drew blood. Two days later, July 19, he called her and told her to get to his office immediately because he wanted to do the blood work again to confirm what he was seeing. If what he was seeing were true then she might have to go to the ER. I drove her to work that day, just in case. He called her phone buy I answered because she was in the middle of a haircut. We are voice twins on the phone so the doctor was none the wiser. He told her that her blood platelets were reading 6,000. The normal range is between 150,000-400,000. She was at risk for a "spontaneous bleed". When she finished the haircut, which seemed to be done in slow motion, I whisked her off to the ER.
After they ran their own blood work, which seemed to be in slow motion, they agreed that she needed a blood platelet transfusion. Having been an adult in 1986 at the onset of the AIDS outbreak and Ryan White dying from AIDS contracted from a blood transfusion, I was freaking out inside. The nurse assured that the blood was very clean and had been tested and retested. In her 20 year career, she had never heard of tainted blood. That put my mind at ease. I was thinking that would be the case.
They admitted her to the hospital that night for more tests. They couldn't release her until her blood platelets were in a safe zone.
I was supposed to leave for Iowa for my bike ride the next morning. I had been saving and training for this all year. I was tormented about what to do. I stayed with Madison all night. After much deliberation in my own head, I decided that I would take Jennifer to the airport and if I hadn't heard from the hematologist before the flight boarded then I would stay home. The nurse from the hematologist talked to me on the phone and said that she would be fine. No matter what, it would be a while before they diagnosed her. She was not in any imminent danger and there was nothing I could do. Madison gave me her blessing to go ahead and go. I knew that she would be fine because she had her dad and her grandparents and other family and friends.
She was in the hospital for 4 days. At the end of the stay they diagnosed her with ITP. You will have to google it. It is an auto-immune disorder.
She was also diagnosed with high blood pressure and being low in B-12.
She was put on steroids to bring her blood platelets up. The steroids made her insomnia worse. When it was time to lower the dosage, she went back to the hematologist and her platelets had crashed and she was in danger of needing another transfusion. He raised the steroid dose and that seemed to help.
She went to a neurologist to get her migraines diagnosed. On top of the migraines she also had tremors. Not good for a hair stylist because that means everyone gets a shag. One of her customers noticed that she was shaking. He asked if she had eaten yet that day. He was thinking it was low blood sugar. She just went with that answer so as not to alarm him.
The neurologist said that her steroid numbers were high and he wanted her to see an endocrinologist. The regular doctor agreed and gave her a referral. The neurologist is also running an EMG on her. That will be tomorrow September 18.
Ok. I got ahead of myself. I said it was a long and winding road. On August 31, Madison woke me up and told me she had a really bad chest pain. I took her to the ER. Her blood levels that indicated a blood clot were elevated. They ran a CT scan and that is when they found a mass in her chest. It was in front of her heart on her thymus gland. You can google that, too. They said it could be a swollen gland or it could be lymphoma. After 8 hours, she was released from ER.
After a two day battle with the front desk of the doctor's office, she finally gets into see the endocrinologist. He diagnoses her with Graves Disease. Again, google. Actually, it wasn't much of a diagnosis. He said it could be three things. It definitely wasn't the other two so it must be Graves Disease. Yes, it is possible for someone to have multiple auto-immune disorders. Graves is an auto-immune disorder that creates hyperthyroidism. Guess what a side effect of the medicine for Graves Disease is? You're right! It lowers blood platelets!!! We decided she should start the medicine until she consulted with the hematologist.
In the meantime, another wind in the road, she had a PETscan done last Monday, September 10. Depending on the results from that they had scheduled a bone marrow biopsy for Friday, September 14. We understood that the PET scan would be the end all be all of diagnosis and its results would be confirmed with a bone marrow biopsy. We had our fingers crossed that the bone marrow biopsy would be cancelled. It wasn't. On a scale of 0-10, 0 being, "go home, you're fine, keep taking steroids, and 10 being. "You have lymphoma" Madison's was a 4.1. Which meant that the bone marrow biopsy would have to take place.
I was able to attend this appointment. He explained what he was going to do. He would try it twice and if he didn't feel good about it then she would have to go to the hospital to have it done. He tried it twice. She is now waiting for them to call to tell her when she will have to go to hospital to have it done. They will use a CT scan so they can actually see what they are doing and can see the bone.
He also said that the mass needed to be biopsied and because of the location it would have to be done by a thoracic surgeon. She is waiting on the phone call of when that will be done. This Friday, a panel of 20 doctors will meet to discuss her case. The regular doctor said she is a "medical marvel". The hematologist said she is "very mature for her age and a real trooper". He said usually he has to carry a box of tissues into the room when he is seeing a patient her age. Of course, as her mother, I know that she is more than a marvel and a trooper. She is absolutely amazing. She has really handled this better than I ever could. She has started a new job. She is basically self-employed because she pays booth rental. She has been dragging herself to work and working long hours. She hardly ever complains. Her medicines occupy a gallon sized ziploc bag. She is truly phenomenal.
I think I have covered all of the twists and turns. She could probably add more. It breaks my heart that I have not been able to go to all of her appointments. I feel blessed to have a job that offers me medical insurance for her. Luckily, her dad is unemployed right now and can go with her to appointments. For the really important ones, where a I think she will get results or the procedure will be difficult I am able to take off time. I am trying to save my hours because who knows how much longer it will be before we get results? And then what will the treatment plan be?
