Posted on May 23, 2017
Posted on May 23, 2017Monday May 22, 2017
Gracie started Avastin again today after about a couple month hiatus. Over the past six weeks, half of the time, she was in the hospital for one reason or another, and the last 4 weeks she was on hold because of her recent shunt surgery. In addition to the chemo, she had an eye doctor appointment. The glasses seem to be strengthening her eye. She will tolerate them for about four hours a day which is a monumental improvement from the seconds she wore them during the first couple weeks. Numbers seem to have fallen a bit but good enough to continue on her chemo regiment at clinic and at home.
Since it's been a couple of weeks since our last update, I will start with Mothers Day weekend. We were able to get away to Colorado for a long weekend. My brother and his extended family are in Denver. We were able to spend Mothers Day with my mom and with my brother and his extended family. It was a fantastic couple of days. There are family and friends in Denver that have supported Gracie every step of the way who had the chance to meet her for the very first time. Needless to say it was very emotional. The weekend was a huge success to include the flight out (flight back was a nightmare). We had Mexican food every day. Did some hiking in Rocky Mountain National Park. John and I threw snowballs at Mommy! Of course, we never hit her!!!! The key to a successful trip is a hotel with a pool. John swam every day.
This past weekend we participated in the Hope and Hero's Children's Cancer Fund walk, which raises money for the oncology unit at Grace's hospital A HUGE thank you to all those who donated and joined Gracie's Gold Ribbon Gang! Grace's team raised over 4K which is great considering it was our first walk. I believe the top team raised about 20K. A few years and we could be there. Gracie got to meet many more people that have been supporting her throughout her battle. We are very lucky to have had so many supporters walking with us. Sunday was perfect day, weather wise, and we had the chance to see many of Gracie's doctors and nurses. Also, a big thank you to the nurses who had to work in 5 Tower for their "march in spirit" which was being shown on FB Live. Thank you so much for supporting all your patients!!!!
Please pray for Robbie and Lylah-Jean, both ATRT warriors. Both have recently been put on hospice with very little time left. Pray for peace in their passing and strength for their parents. God Bless!
Posted on May 12, 2017
Posted on May 12, 2017Kenneth Skuches Thursday, 11 May 2017
Grace met with an endocrinologist today... Finally! It took about three months to get this appointment. To be fair to Obamacare, we had an appointment about 5 weeks ago but she was in-patient when originally scheduled. There is concern about Grace's growth as it has slowed. She is at the bottom of the spectrum. With the chemo's and medications she is currently on this isn't unexpected. However, a few tests and we should be able to determine what hormone she is lacking and go from there. The good news is the Doctor seems amazing. She wanted more interaction than just reading her chart and best of all she wanted to get to know Gracie!!! A doctor that really cares!!!!
Prior to the endo appointment, Grace had a follow up with her dentist. Who happens to be another amazing doctor!!!! Unfortunately, Grace has two more cavities on her front teeth. I am the first person to accept blame when I mess up but this is really more of a result of the chemo! Instead of a filling we tried a recently approved method of using silver nitrate. It works well on baby teeth, stopping tooth decay. No drilling, it's painted on the effected tooth. The downside is that it turns the effected area black, really black. The rest of Gracie's teeth are coming in. She has two that have broke through and two that will come in within the next couple months.
Not much else is new. We all seem to have or are getting a spring cold but it seems short lived. John's class had a Mothers Day concert (more like two songs) yesterday. He was so happy to have Mommy attend and the songs where so sweet. He practiced his singing with Daddy and Grandma. Jen loved the time with John!!!!
Posted on May 5, 2017
Posted on May 5, 2017Kenneth Skuches Thursday 4 May 2017
Let's start with... It's been a very good week! Gracie has improved so much since her discharge last week. She is very happy and playful. She started her daily chemo this week which is bittersweet. Her protocol called for the chemo to end in April and she has been off all chemo's for about a month. Thankfully, her MRI was clear! However, ATRT can attack the spinal column. At age three, more options are available that she cannot receive at age two. In the end, we decided the the risk of remaining on chemo for an additional 8 months outweighs the risk of a relapse. Grace will receive another brain/spinal MRI in June. We continue to pray for good news. In the mean time we try to live a normal life.
Gracie' therapist is starting to see sign of more balance. She is really working hard with her parallel bars. To the point that she laid down and had a little tantrum this past weekend. She was pooped!
John and Rose are doing well. It's hard for John when Mommy or Daddy spend the evening in the hospital. I hope he doesn't blame Grace for us being away. We try to make it up to him when we can and explain why we are gone. Very tough! He is an amazing big brother to both Rose and Gracie!!!! Rose is starting to stand loves to take off crawling. Jen and I think it's motivating Grace to get around more. We have seen a difference with Gracie crawling to a toy instead of pointing to it.
Other than that... We are looking forward to summer. I am tired of being cold! However, I'll complain about the heat in another month or so!