Third Times a Charm

Today, we landed in the hospital for the third time this month. The first week, in early March, Leah was mistakenly diagnosed with and treated for pneumonia. She’s had atelectasis in the left lung since November. This was mistaken as pneumonia, because the doctor didn’t compare the X-ray to previous images. (And Mitch and I didn’t know that pneumonia and atelectasis look the same, being we’re not doctors.) 

We learned of this mistake last week, when were admitted to the PICU for the same symptoms. It was determined the symptoms were bipap related, not pneumonia. So the goal of this second admission was to titrate the bipap. After three long nights and a lot of confusion, we were sent home with a new bipap with incorrect settings.  (Am I kidding? Nope.) Then, even after the settings were corrected the next day, Leah was still having symptoms. So here we are today, back in the PICU…

We are so, so tired of being in the hospital. Please pray that the doctors determine the correct bipap settings, so we can go home. And then stay home for a very long time. 🏠❤

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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. ❤

Headed Home

The EEG did not show anything remarkable during the involuntary movements. They are definitely not seizures. The doctors believe the new symptoms happened because we discontinued steriods. We resumed steroids on Tuesday, and the involuntary movements have decreased- in fact, none so far today. Hoping that sensation in the leg may also return after a few days. 

Working on arrangements for second opinions on all of these changes. 

Thank you for your continued prayers. 

Another Hospital Stay

Leah was having some involuntary movement in her legs and arms yesterday. The events became more involved as the day progressed. Late afternoon, I called 911. I was concerned that she might be having a type of seizure, and I knew it wasn’t safe to drive her to the hospital myself. She was alert and responsive the entire time. When we arrived at the hospital, her core temperature was very low, so they warmed her with a special blanket. Her white blood count was also lower than normal. There was no sign of infection, but they gave her antibiotics just to be safe. 

She is currently maintaining a normal temperature, and all of her blood work looks good. They started a 24 hour EEG around 3 this afternoon. She’s had a few episodes of the involuntary movement while connected to the EEG. The next step will be determined after reviewing the EEG results.

The lack of sensation in her right leg has increased. Although the motor function is there, it’s been more difficult for her to stand for transfers. In response to the change in her right leg and the involuntary leg and arm movements, we started her on another high dose of steroids. We will continue the steroids through Sunday with the hope that we will see the new symptoms subside. If not, we will discontinue the steroids. 

We are also in the process of obtaining a second opinion on the recent changes.

Please pray for our sweet girl.🙏

Good Results

The MRI showed overall improvement. No explanation for the lack of sensation in her right leg… We will just keep moving forward and praying for complete healing. 

Leah was incredible today. She remained composed, despite the situation. Not only was this MRI tube much smaller, but the stabilizing mask was bulky and entirely too close to her face. For a second, after they snapped the mask into place, I almost called it off. But she remained calm, so I followed. On top of that, the earphones weren’t working, so the playlist that she spent an hour organizing the night before, could only be played in the room to be heard over earplugs and the banging of the machine. I have no idea how she stayed in there, absolutely still for two hours, without a single complaint. Executive decision- NEVER subjecting her to that again. We’ll hold out for MRI 3 or go elsewhere.

Tomorrow was supposed to be Leah’s last day of rehab, but we were offered a two week extension. As much as we want it to be over, we know it’s the best thing for her. So we’ll be sticking it out until January 27th.

We’ll continue with chemo every three weeks, and her next appointment is Tuesday. 

Prayer Request

Leah’s MRI, originally scheduled for the end of January, will take place tomorrow at 1:30. Last week, Leah noticed a lack of sensation in her right leg, which is her good leg. She still has full motor function, for which we are thankful. Please pray that we get good results, despite this change. 

Unfortunately, MRI 3 wasn’t available on such short notice. This means no movie… And a long, crappy two hours for Leah. How we live in a world inundated with technology, and a children’s hospital doesn’t have movies in the MRI machines is beyond me. It’s at the top of my “Ridiculous List”… 

I probably won’t have the results until Friday, since it’s taking place so late in the day.

Thank you for your prayers. 🙏❤️

Week 4

Today marks the beginning of our fourth week of day rehab. Leah’s new orthotic was delivered on the 22nd, and she is making good progress. We are excited to see the growth she’ll make in the next three weeks. Her tentative discharge date is still January 13th. At that point, she’ll have therapy only twice a week. Our goal is to make it to the gym an additional 3 or 4 days a week to continue building her strength.

Her appointment with the cardiologist went well. Her heart looks perfect, no signs of diminished function. Praise God.

The pulmonary doctor ordered a test that we will conduct at home to determine if there is still a need for oxygen when using the BPAP. In addition, we will repeat the sleep study in February to make sure her BPAP settings are accurate.
Her next MRI is at the end of January, and she is receiving Avastin today. We are praying that this new year will be a year of continued healing for Leah.

Thank you to everyone who ordered the new Brave Strong Girl shirts! We raised more than $3600 for St. Baldrick’s and pediatric cancer research. At the request of a few friends, we relaunched the fund. If you still need to order a shirt, here’s the new link.

https://www.bonfire.com/bravestronggirl/

The last day to order is January 2nd.

Hope you all had a Merry Christmas! 🎄