Last Day of Radiation

“Ring this bell, three times well, its toll to clearly say, my treatments are done, the course is run, and I am on my way.” 

  
 Happy Day! On our way home!

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12.22.15

Leah received her second dose of Avastin today. When Leah has chemotherapy, even a low dose, it’s still an eerie, surreal feeling. Autopilot is my daily mindset that keeps my thoughts on the day’s to do list and wards off worry. But autopilot switches off as soon as we enter the treatment room. I’m only in the moment, and I let myself feel. I feel her worry that the poke will hurt or that it will take a few tries to find a good vein. I feel her sadness when we still have an hour left, and she wants to go home. And I feel her anger when she doesn’t want to feel sick. I always hope that she knows my heart is right there with her, trying to carry some of her burden. And when she slips back to being a typical eleven-year-old, busy coloring or playing on her iPad, I let myself wonder- just for that moment- how on earth we ended up here.

I know I’ve said it before, but Leah is a soldier. This morning during proton, I noticed when they snapped down the mask, that her legs tightened. I knew it hurt. But instead of getting upset, she wriggled just enough to make the mask comfortable.

This afternoon, she was so composed during her Avastin treatment. During the poke, I can always see her level of stress in the tiny wrinkles between her eyebrows. Today, I watched the wrinkles fade as she closed her eyes and focused on her breathing. I was so proud of her.

Then on top of today’s treatments, Leah was told that she has to increase fluids to prevent the need for IV hydration. The very last thing she wanted to do at the end of the day was drink 40 ounces of water… but she did it. No complaints. I’m a lucky mom.

This will be her first week off the steroid since starting Avastin. Please pray that the temporary Avastin and proton radiation prevent further need for steroids. We have not seen an improvement in the headaches behind her eye. Hoping that we will see some improvement this week- it will be her third week on the new medication. Leah also got some new kicks this week to level out her leg length. She is more comfortable walking, and she is working on breaking old habits related to limping.

Only three more proton radiation treatments, and we can go home! We can’t wait!!!

Thank you again for your continuous love and support. We are blessed. ❤️

Merry Christmas!🎄

 

12.11.15

Last week, after speaking at length with the neuro-oncologist and neurologist, we decided to make some adjustments to Leah’s medications. We discontinued the antibiotics, because after nine days there was no change in the pain behind Leah’s eye. We believe the eye pain is not due to congestion, but likely a result of the Trigeminal Neuralgia. Once Leah stopped taking the antibiotics, her stomach-aches subsided. Saturday evening, we added a new medication that may help the pain behind her eye, but it can take several weeks to work. It also causes drowsiness, so she takes it before bed. If we see improvement, we may be able to start reducing and eventually phase out one of the other medicines that she’s been on long-term.

On Monday, Leah received a dose of Avastin, which is one of the chemotherapy drugs she was on previously. She is only receiving half the original dose and tolerates it well. Again, we will have to closely monitor her kidneys. The Avastin may also help the pain behind her eye and allow us to discontinue the steriod- which would be great. She’ll receive another dose on the 22nd and likely the 5th. The Avastin is given through an IV and takes about two hours. She was a soldier when it came time for the poke, and all went well.

Every Tuesday, she sees the proton doctors, and they feel like she is doing well with the treatment; however, it could be several months before we know the final results. In February, she will have an MRI in Akron and will continue to be monitored every three months. The proton radiation can cause the tumor to swell, so even six months out, there might be no visible change. In the meantime, we hope that the symptoms that require medication subside.

The orthopedic surgeon in Boston feels that we are right on track with her scoliosis and leg length discrepancy. Surgery to close a growth plate was originally scheduled for January, but we’ve pushed it back to February. There needs to be at least four weeks between Avastin and surgery, because Avastin can complicate healing. After surgery, she will also have to wait four weeks before another dose can be administered. I feel like it will be tricky to manage, but Dr. Rush is confident we can make it work.

We have friends visiting this weekend, and Leah is in good spirits.

Boston is decorated for Christmas.

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And we a made special trip to Georgetown Cupcakes! Leah’s been a fan of Sophie, Katherine and the show for years.

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Thank you so, so much for the sweet cards and gifts that you’ve sent our way. They truly brighten her days. We are feeling completely overwhelmed by all the love and generosity. We are sincerely thankful, from the very bottom of our hearts.❤️

 

 

12.07.15

Last week, we had the privilege of meeting Shannon and Cathy from the Polished Nail Boutique. They volunteer for Home Away Boston, the nonprofit that has provided our wonderful apartment during our stay in Boston. In addition to uplifting patients and their families with beautiful nails and friendly conversation, Shannon is running the 2016 Boston Marathon to raise funds for Home Away Boston. Home Away Boston gives families, just like us, a place to stay while their child receives proton radiation at Massachusetts General. Here is the link to Shannon’s fundraising page:

https://www.crowdrise.com/homeawayboston2016/fundraiser/shannonsullivan5

 

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We will always remember Shannon and Cathy’s kindness, and our hearts will be with Shannon as she runs the Boston Marathon in April! Thank you!

12.01.15

This week Leah is feeling tired from radiation. She’s slept 3-4 hours in the afternoons, and she’s still sleeping well at night. She’s battling pretty intense headaches throughout the day and new bellyaches. Tomorrow, we see the neuro-oncologist and the orthopedic surgeon. Praying God gives them the wisdom to set us on the right paths.

Thursday will be a much better day. The only appointment we have in addition to radiation is for mani/pedis- a generous gift from a sweet friend. The only thing we’ll have to think about is our favorite color 🙂