Let me catch you up a bit on what we have been up to. I have attempted many posts in the last week, but I just haven't been able to make it through to any of them! I usually post at night, and it seems I can't make it through a post without falling asleep. Unfortunately soon after I stopped the medication for the Lyme disease that was just beginning to help, my symptoms all came back. I then decided it was time to find a doctor who specializes in Lyme. You would think that out here in Lyme heaven that would be easy, but not so. After much internet research, I have come to find out a lot about this disease that I didn't ever want to know.
For example, you can't really find a Lyme doctor online because doctors don't want their information publicized. Why? Because the medical regulating agency sets the standard for how long a patient with Lymes is treated-usually three weeks, then you're done. That seems to work well in patients that get bitten, see the rash, go to the doctor, all in a relatively short period of time. If you are like me, whose symptoms appear slowly over a long period of time, never saw the rash and have probably been infected for months, that treatment is highly ineffective. Several doctors I have read about realize this, came up with their own methods of treatment and did find some success in curing the disease. Many of those doctors were then investigated, and lost their medical licenses for using the drugs outside of the prescribed dosage and/or timeframe. It is so strange.
After much "underground" research, I was able to secure a recommendation for a LLMD (lyme literate MD) on Long Island. I made an appointment for next week. In the meantime I pleaded with my primary physician to put me back on the antibiotics until that time, but he refused saying I had two different drugs, for 3 weeks each, and was not cured, therefore, he is not convinced that it is Lyme disease, rather than something else. It's very frustrating, considering I tested positive for Lyme and nothing else and have ALL the major symptoms. I have constant headaches, occasional flu-like symptoms, extreme fatigue, joint pain, lower back pain, dizziness, irritability, anxiety, depression, memory loss, confusion, cognitive decline, insomnia, sore throat, ear pain, etc.
It's not a lot of fun. I just try to keep moving throughout the day so that I don't end up on the couch. Ok, enough about me, what else has been going on?
Hannah started swimming lessons again this week, and she really enjoys it. She has been asking to go back. School is about the same, homework has become more challenging for her. She worked for 2 hours one night last week on her homework. She wasn't frustrated, so I let her keep going. She shouldn't be working for more than 1/2 on it, plus 20 minutes of reading. She did start going into school a 1/2 hour early, 3 days a week to get some pre-teaching of some of the material. It seems to help if she can preview the work before she does it in class. It decreases her anxiety (a little) and gives her another opportunity to see the work. She needs a lot of repetition.
This weekend she had two friends over for a sleepover. Since Colby is always having girls over, or at their houses, Hannah wanted to have girls over too. Of course she had a list of what to do at the sleepover, what to eat, crafts, etc. We went to the movies to see Beverly Hills Chihuahua and it was really cute. Chihuahuas are Hannah's most favorite dog and she was delighted with the movie. She had a few moments of anxiety during the sleepover, but she came to me, and we worked it out, so there were no scenes of crying (which was my biggest fear).
I received a call late Saturday night with an invitation to go into NYC to meet with 3 other medulloblastoma families. My friend Nancy, Jacob's mom, whom we met while in Boston for proton radiation and have stayed in touch with, called to invite us in for a day with two families from out of town staying at the Ronald McDonald House. She knew one of the moms-Anne White-son is Zachary and we knew the other- Coleman!! We had wanted to try to meet the Larsons while they were in NYC, but didn't want to impose at a time of stress for them. Coleman and his family came back to NYC last week to start his new treatment in hopes to finally get rid of the cancer that has come back for a second time. I hadn't posted this yet, but in preparation for this antibody treatment, they discovered that Coleman's cancer after the last round of chemo to try and shrink the spots just a bit more, is bigger. Bigger in his head and bigger on the spine. NOT what they were hoping for. The antibody treatment is now on hold while they explore what to do next. The antibody works best if the cancer is under a certain size. And, it's only a one time shot-can only do this once.
So, the girls and I headed into the city yesterday to meet with Nancy and her younger son Ben, Anne and her son Zachary, and the Larsons. We met at the Ronald McDonald house in NYC-which is an amazing place then headed over to central park. We walked and talked and eventually wound up at the zoo. Hannah remembered Ben from Boston, and Colby asked if Ben had cancer too. I told her no, it was his older brother Jacob, who didn't come out yesterday. The kids all had a nice time, and it was fun seeing Caden and Coleman together in person. Coleman was a bit quiet, he is still recovering from his last round of chemo, all the tests and latest surgery to put the reservoir in is head so that the medicine can be put in directly to the CSF in the brain. Zachary and Coleman have the same stitches right now, both having had the surgery last week.
Our conversations weren't about what schools the kids go to, or what new activity they are enrolled in. Our conversations were about diagnosis dates and cognitive issues and chemo. Out of the 4 families there, Hannah was the only one that had not recurred, or still had refractory cancer. I try not to dwell on that too much, it drives me crazy.
Sure wish we could have spent some more time there with everyone. It was nice to meet Anne, and her son Zachary was a smiling little boy who is just the cutest. The Larsons-what can I say, they are simply a wonderful family. They are sincere and down to earth people, so easy to talk to and fun to be with. Friends. Please say a prayer for all of them as they continue to fight the fight.