Rebekah's Scans Are Stable; Mommy Not So Much ...
Rebekah's scans are stable with nothing remarkable. At least that is what we heard from the nurse. We didn't have a chance to meet with the doc because mommy's got an infection which has really wiped her out and going to an oncology with a fever is not a good idea. We've rescheduled for next week. We spoke briefly with endocrine and they don't think they'll be making any changes to her medications. We will meet with them next week also, but needed to order more meds so wanted a quick update.
Now for the not so good news. Going into the MRI, we had a couple of ideas of what might be going on. One was MS (like Mommy's Mom) - it is livable but disabling. Another was ALS (like Mommy's Dad) - fatal. Third was both MS & ALS and fourth was something else entirely. We really hoped for the something else and that it would be easily treatable and if not that then MS.
Well, Mommy's MRI was clear indicating that she does not have MS. After the neurologist performed some other testing on Mommy's weak leg earlier this week, Daddy asked what she (the neurologist) was seeing on the screen of the device. She stopped and said that it was showing her that Mommy has ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease). What? Did we hear that correctly? Unfortunately, we did hear correctly. She is referring us to an ALS Clinic (the same clinic where Mommy's Dad was treated), so we won't really know much more until after we have that appointment, which hasn't been scheduled yet.
We have known that ALS was a possibility as it runs in Mommy's family. Her dad died of it 10 years ago, her aunt died of it two years ago and many, many other relatives have died from it. It is a disease for which there is no cure. Typical life span after onset of symptoms can be 2 years to 5 years with 50% surviving at least 3 years. In 10% of ALS cases, it runs in families and when it does, it can be very aggressive with much shorter time frames. Mommy's dad died 7 months after his first symptoms (Mommy has been having them for 3.) Each person reacts differently and makes their own choices which can impact the outcome. For more information, you can check out the ALS Association website for more information on the disease.
We don't really know what is going to happen. We just have to take it one step at a time. Meanwhile, we are doing some research and trying to "wrap our arms around" it. It hasn't been an easy week. Mommy has been fighting this infection which has kept her pretty much in bed or on the couch without any ability to really function or process the news. Finally, with antibiotics, pain meds and anti-nausea meds, she is feeling a little better today.
Right now, the girls haven't been told much of anything. They know that Mommy is really sick right now and just needs to get to feeling better. We've been telling them that Mommy's leg is hurting and they need to be careful around it. We probably won't tell them much more, until after we've met with the ALS Clinic and have a better idea of what to expect. Then we'll have to play it by ear as to what to tell and when to do it.
Please continue to keep us in your prayers as we continue down this new path.
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