One Sick Mother

After months of hard work with all sorts of early intervention specialists, Hope is a normal healthy 2 year old, and now that all of the pressure is subsided, mommy has gotten massively sick.  This week was a test for all of the help and supports that we had to demonstrate to DCS that we had in place just in case something happened to mommy.   As many of you know, mom has been on various forms of Chemotherapy for the last six years to treat her Multiple Sclerosis (MS, not MD).  She is one in a million who has had a very serious course of MS and then who was put on off label treatments for her MS.  For those of you who are not familiar with MS, here is a quick primer on what the disease is and how it has worked for Mom.  Keep in mind that her course of the disease is far from normal, but it is the reality that we live in everyday.  If you have heard the story, then feel free to skip over the next two paragraphs to see what is going on today.

Multiple Sclerosis means literally “many scars”  in this case, there are many scars or Multiple Sclerosis on her brain and spinal column which were caused (in theory) by her immune system being overly active and attacking the insulation around the nerves in her brain and spine.   This normally is diagnosed between 25-54.  These scars can be seen in many different ways, some people have trouble moving their feet, hands, neuropathic pain (think ice cream headache that won’t go away),  loose sight (ophthalmologists are the second most likely to diagnose the disease), have bladder issues, or even loose hearing in a few cases.   Mommy by her 21^st birthday had been dealing with various issues including vision loss/ altered vision, severe neuropathic pain, drop foot (inablility to pick up or move a foot consistently), and even hearing loss in one ear.   She had to move home from college due to her symptoms -  it took a long time for her disease to be diagnosed but it ultimately was but she had 11 flare ups within the first 12 months that she was diagnosed.  The standard course of treatment is to treat immediate symptoms or flares with high dose steroids for one week (1000 mg per day for 5 days) and then give the patient the choice of which disease modifying drug to go on.  All of the disease modifiers have major negative side effects as three of them are interferons and the other is a different semi-anti-inflammatory drug (easiest way to explain).  All are injected at least once per week, when mom was given the choice, she asked what the best one was.  The doctors in Indy wouldn’t tell her which to pick, but she got it out of them that Rebiff was the best.  She took it and had nasty flu like symptoms for the every day after she took the 3 times a week shot, so she only had one good day non shot day per week.  She returned home and found her amazing doctor who recognized the rarity of the way that her disease was working.  It was far from the normal course and he recommended that she undergo a rarely used but FDA approved chemo treatment for her disease.  The doctor was just hoping to set a baseline to keep her from getting worse, but it fully reversed her disease (at the time she was the youngest woman in the world to take the medicine for MS).  This was to the extent that even though she had just finished four months of IV chemo, I met her and fell in love just a week and a half after her last dose.

Then after we got married, she was offered her dream job and we moved to our current area.   She then started having flare ups again and we were traveling 40 minutes to a hospital for five days each month for steroid treatments where her neurologist had practice rights.  After she degraded for about 5 flare up cycles, we had a very serious come to the light meeting with the doc.  He said that if she hadn’t been on Chemo already, he would have recommended that she go on a drug that has had some deaths directly from the medicine.  Since she had been on the chemo previously, she was no longer a candidate for Tysabri, but there was a drug that was approved for kidney transplant patients which was showing success in the very small population trying it in Cleveland.  Our risk tolerance is very high for trying different drugs – after all, she was already fully disabled.   After seeing the risks and balances, we decided that it was time for mom to try the new drug as it was our only shot.    Fast forward to today she knock on wood has been on the oral chemo for over three years with a relatively high degree of success in keeping her immune system suppressed enough to help avoid getting much more disease activity.   Granted, there are parts of her brain which have been destroyed completely and irreversibly, but other than her memory issues, she is in good shape.

So mom has been on Chemo for the last three and a  half years; then she had sudden on set illness on Monday, like in less than four hours she was down hard.   She went to the Doc in a Box and found that she likely had the flu.   Then she was stuck in bed and her mom came up to help out with Hope, then today LadyBug’s mom helped watch her at their place, and finally mom’s dad is coming up.  She was put on an antibiotic today  and it looks like she may be coming back around.   This is the scary type of sick that is so dangerous for Chemo patients as it is the type of seemingly stupid nuisance to the rest of us that can cause serious long term illness for those who are immune suppressed.  Oh and did I mention that illness of any type also brings out MS symptoms.

So today was far from a total loss, Hope had an amazing time today with Ladybug’s family!  I am so thankful that even though she needed a different house and situation, she is still a part of the family.  This temporary illness is a strong reminder of why I have scaled back my work load a bit.  While most guys my age are working as many hours as they can to get ahead in work, I want to work as many quality hours as I can but I don’t  want to go for a single day without seeing my wife and daughter playing side by side with both of them disability free.   I do know that at some point in my life,  mom will have some part of her disability increase, but until then I want to spend every moment I can with them;  I will have plenty of time once Hope hits school even if mom is having issues to make more money- but I won't have these memories available.

Thanks for the prayers!