June Update

Hard to believe two months have passed since Leah’s last MRI… But here it is June, and the July MRI is just around the corner. 

Leah’s last MRI showed an increase in damage from the proton beam radiation. Leah was completely off steroids and chemotherapy for the first time in over a year, and doctors believe the true damage was finally unmasked.

In January, when Leah was losing sensation and function in her right leg, I just kept praying, “Please, God. Please don’t take her right arm. Give her this one thing. Please.” I drew a line in the sand. And He crossed it. Just prior to the April MRI, Leah lost some function in her right arm and hand. Everything she did with her right hand became difficult: eating, brushing her teeth,  writing… And the most heart breaking, her ability to draw, color, and paint. Her artwork was her peace and new-found, quiet happiness. And suddenly, that too, was taken away. 

Despite the constant decline, we’ve  continued with physical therapy and occupational therapy two to three days each week. There has been some improvement in her arms and hands. At therapy, she’s able to walk on the treadmill for 8-10 minutes without the use of a harness. She can also walk a short distance with a walker with some assistance. My girl is constantly working to make her body stronger. She never, ever gives up.

After the last MRI, I was convinced that we had seen the worst of it. That things could only improve from this point forward. But sadly, just this past Friday, a swallow study revealed that Leah is aspirating when she drinks liquids, and she is having difficulty swallowing solids. Moving forward, we will add a thickener to her liquids and remind her to swallow twice with each bite of solids. Surprisingly, the thickener is not awful. It doesn’t change the taste of the drink, only the consistency. Leah has been a soldier about this, as usual. Never complaining.

This new finding may explain some of the respiratory problems we’ve been facing in the past few months. The challenge is finding a pulmonary doctor to look at the big picture. After our frustration with Leah’s pulmonary care at Akron Children’s these past few months, we received a prior authorization to see a pulmonary doctor at the Cleveland Clinic. This experience proved to be just as disappointing. At the first visit, the doctor changed Leah’s respiratory regimen. I felt hopeful that we were finally on the right track. But when we followed up a month later, the doctor still hadn’t looked at her chest X-rays, CT scan, and sleep study as promised. Not only had he not looked at them, but he misplaced them. They were nowhere to be found as we sat waiting. Then, throughout the appointment, he seemed to keep forgetting that she has a brainstem tumor, which plays a critical role in her respiratory function. There really are no words to express how disappointed I felt. It was two hours in the car driving to and from, and an unproductive hour and a half appointment. It was pathetic. I’m not sure what we’ll do next. 

Daily, I search for information on brainstem ganglioglioma, and I continue to find very little information. I read over and over again that it’s incredibly rare and undocumented. I just can’t understand, if this is the case, why nobody is interested in documenting her case- especially the tragic side effects of proton beam radiation. It just doesn’t make sense. How will there ever be advancements in treating this rare cancer when nobody is paying attention? More importantly, the next child with a brainstem ganglioglioma- just that one child- might benefit if her doctor knew about Leah’s case. That one child might be spared the devastating effects of proton beam radiation…

Please continue to pray for Leah’s complete healing. With God, ALL things are possible. 🙏🏻

MRI Tomorrow

At 2:45

Please pray for Leah. I know God has heard our prayers. Not sure why things aren’t getting better, but I know God’s timing is perfect. And I think we should keep praying. I know she will feel your prayers. 🙏❤

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. 🏠❤

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.