Forward is Forward

I was poking around Pintrest and saw this post.

 

Reminded me of my sweet Leah…

We’ve definitely made some progress this past week. Today, she made it down the steps and around the house without a crutch. Two steps forward. 😊

We also returned to physical therapy this week, and it wasn’t easy. When she heads into the gym with her physical therapist, I tell her to work hard and be tough. I know she is tired and sore, and she needs to dig deep. And she will, always my soldier.  We’re going to work really hard the next few days, so physical therapy isn’t so rough on Monday.

As her leg is on the mend, the radiation side effects are still around making the recovery more challenging. We are focusing on one day at a time, keeping in mind that there is a plan greater than our own.

Thank you for your continued prayers. Knowing that you are thinking of Leah and praying for her healing keeps us feeling hopeful and strong. 💛
 

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Follow Up

The follow up visit with the surgeon went well. He said her leg looks great, and she’s coming along just fine. He expected her healing process to take a little extra time. The pain in her thigh may be from the tourniquet that was used during surgery. She no longer needs to wear the immobilizer. At first, the idea made her nervous, but the crutches are much easier to manage without it. I’m glad that we don’t have to use it… It was so big and bulky, and the Velcro straps were always tangled. I’m adding the idea to my Shark Tank list…

Leah will return to physical therapy next week to work on mobility. In the meantime, she is resting and catching up on school work.

  

Home Away Boston

Our friends at Home Away Boston are selling shirts to support the Home Away Boston Marathon Team. 100% of the proceeds from this event will be donated directly to Home Away Boston to support children who are receiving treatment for cancer or other critical illnesses. This is the nonprofit that provided us with an apartment while Leah received radiation in Boston. They took such good care of us, and we are so grateful. ❤️

If interested, here’s the link to buy a shirt or make a donation.

http://www.booster.com/2016-hab-marathon-gear

  

02.15.16

Last week’s leg surgery went well. Her surgery was at 7:30 in the morning, and we were home by noon. She has two very small incisions on each side of her knee. The doctor removed two-thirds of her growth plate which should prevent further growth of the left femur. And in the next two years, the right femur should catch up in length within 1cm, which is typical for the average person.

She is using crutches for pain management and wears an immobilizer when she is standing. The crutches are challenging. She’s working really hard- using muscles that are weak from chemotherapy. Honestly, I didn’t expect the pain to still be so intense a week out. We see the surgeon on Wednesday. Looking forward to checking-in and making sure we’re on the right track.

Thursday, Leah had a pain in her thigh, quite a distance from the incisions. We checked with the surgeon, and he suggested we head to the ER to rule out a blood clot. Leah’s recent chemo, Avastin, increases her risk. After a long night, 11:30PM to 5:30AM, an ultra sound confirmed that there was no blood clot. It was one of those things… I knew it was highly unlikely, but at the same time I would go insane if I didn’t know for sure. In the end, I was glad I had it checked. After your beautiful, smart, perfectly healthy child is diagnosed with a rare brain tumor in a rare location, “highly unlikely” doesn’t mean much.

Please pray for continued strength, patience and healing. 

Good News

The MRI showed some necrosis (dying) of the tumor. This is a very good sign! We pray that the radiation will continue to kill the tumor. The next MRI is in three months, and we are hoping to see significant changes.

Right now, Leah feels miserable because the radiation was so hard on her brainstem. The necrosis could also be causing her to feel this way. We will work with the doctors to treat her symptoms and keep her feeling as good as possible. Most importantly, she needs to rest when she’s tired.

Tuesday is surgery to close the growth plate in her left leg. It’s a very simple surgery, but I’m worried it will take her longer than normal to recover since she isn’t feeling well. The bright side is that we’re checking it off the list, and we’re one step closer to feeling really good by the time summer rolls around. And right now, that’s our goal 🙂 

Update

The first two weeks home Leah was extremely tired. Eventually, she was able to attend school for a few hours each day, and even a few dance classes. Last week severe headaches and dizziness set in. The doctor started her on steroids again this past Saturday.

She is spending the days resting, completing school work, and doing her PT and OT exercises. Her MRI is tomorrow morning. Please pray for good results and that the doctor has a plan for relieving the headaches and dizziness. 🙏🏻