Update

During the past month, we’ve traveled to Baltimore and Cincinnati seeking second opinions. In Baltimore, we saw a neuro-oncologist at John Hopkins. Before our visit, the John Hopkins neuro-oncology team reviewed Leah’s case. They concurred that Leah’s neurological changes are a result of radiation induced vasculitis, which is a narrowing of the blood vessels which reduces the amount of blood flow through the vessels and can affect different areas of the body. The doctor at John Hopkins also explained that his team agrees with Leah’s course of treatments thus far, including the proton beam. He said that we took her to the “best place possible” for proton beam radiation.

Prior to radiation, when the doctors in Boston explained the possible side effects of radiation, radiation vasculitis and significant neurological decline was never mentioned. We knew there was a good chance of partial hearing loss and a low risk of secondary, slow-growing tumors. We were also prepared for the fact that the symptoms of the tumor could have intensified from swelling during the first year. But that was it.

The medical professionals in Boston, regarded as the “very best” in the country, failed to thoroughly and honestly inform of us the possible risks. Now, they claim that Leah’s current symptoms could have happened with or without radiation. Their motive is to explain an outcome that doesn’t negatively affect the success of their business.

I vividly remember the first day I spoke to the proton beam doctor. I was with Leah at sixth grade camp. She was in a class, and I was standing outside a cabin on a wooden walkway. The doctor and I spoke on the phone for quite some time. She explained the risks of choosing the chemotherapy we were considering. Leah would be very sick, and this particular chemotherapy would put her at risk for Lukemia and other secondary cancers. She explained that the chemotherapy would only buy us time until radiation was necessary- it would not kill the tumor. Then, she explained the benefits of proton beam radiation compared to typical radiation. She told me that this was likely the fix that would allow Leah to live a perfectly normal life. Her words filled me with incredible hope, and I was convinced this was the best decision.

In the meantime, I continued to read as much information as I could possibly find. In fact, I still have the long list of questions that I took to the initial appointment in Boston… In the end I was confident with our decision to follow the recommendations of these doctors. 

Now, Leah is suffering from significant, life-altering neurological deficits. 

When I look back on the past 4 1/2 years, it is evident that Leah’s health has declined, not only with radiation, but with every single medical intervention she’s received. Now, I wish I could start all over. I would have made different, though unconventional, decisions. I would have recognized the medical world as a business, instead of care providers. I would have trusted less.

Now, we can only move forward, working to build strength and praying for healing.

In Baltimore, we also had an appointment with a brain injury team at a rehabilitation facility. They recommended a month of inpatient rehab in Baltimore, but the amount of PT and OT offered each day wasn’t worth the commitment. Currently, Leah is in outpatient PT three times per week and OT two times per week. Her new therapists are incredible, and she enjoys working with them. The therapy is hard work, both frustrating and exhausting. But she always feels proud of her efforts afterwards.

Yesterday, we consulted another brain injury team, this time at Cincinnati Children’s. They will be Leah’s new rehab doctors as we move forward with therapy. They started Leah on some new medications to help with the involuntary movements which she started experiencing in January. And while they are hopeful she will walk again, they also recommended a custom fitted wheelchair to use in the meantime. We will return to Cincinnati in about two months for follow up appointments.

Even though the neurological changes are overwhelming, every day we are thankful that Leah has not been affected cognitively. She is so incredibly intelligent and perceptive. And her timely sassiness simply melts our hearts. She is strong, inspirational, and has the most beautiful heart- just like her big sis. How lucky we are. ❤

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