Feb. 15th

There is no new medical news to report - You know what they say, 'No news is good news." The only health related information is that Robert continues to be extremely tired during the week following his chemo treatment. There are some evenings that he goes to bed before or with the boys.
We are all learning to adjust to the changes in our routines and daily lives. I had a thought today- Robert's treatment schedule and the effects of the treatments are like the developmental stages that the boys encounter as they grow and the behaviors that change as they reach these different stages. Robert and I and the boys are still learning what the effects will be and how to handle them, as he progresses through his treatment schedule. This is a journey that we have never experienced before and we are trying to figure out how to manage them. This is not unlike the boys advancing through different developmental stages and exhibiting new behaviors that challenge us as parents. We are still trying to figure out how to manage them. We are blessed with wonderful children that teach us about- pushing the limits (testing people and objects until the understand how they operate), perseverance (never giving up until the mastered a new toy or game) , using their imaginations to create their own adventures, and resilience (the ability to bounce back from disappointment).
We as adults have a lot to learn from our children.
When we feel like we are being pushed to the limit- view it as a learning experience. When we feel drained emotionally and/or physically- know that you can persevere with the hope that it will get better. We can persevere with the belief that everything happens for a reason and that life will be good again. Being resilient means never taking our lives for granted. Even during the sad moments recognize that there are so many things to be grateful for.

Feb. 10th

Yesterday- Robert and I took Bryce to Johns Hopkins for the Children's Orientation. This was a day for children/grandchildren of patients to tour the hospital and to learn more about the hospital/treatments. We are recognizing that the 'unknown' is fearful and that knowledge is power. We all struggle with the fear of the unknown and the inability to control our world. This gave Bryce an opportunity to learn more about cancer/treatments/and the hospital in a safe and nurturing environment.
This program was created to demonstrate, to the children, where their family members are going and to show them what & how medicine/treatments are being provided. They had an oncologist speak in general terms about good cells-bad cells and then toured the hospital. Of course the initial talk was a bit difficult for Bryce to comprehend and he verbally noted that he was bored. However, after we left the hospital and later in the day he asked very relevant and articulate questions about those 'cells.' We will continue to try and talk with the boys in an honest and appropriate manner. After the group meeting, Bryce got to go on a tour of the hospital with the other children. Each child was chaperoned by a staff member and we were given a pager to inform us if Bryce was upset or scared. He got to make 'fake' chemotherapy and a radiation pillow with his hand print in it. Apparently he got to work the pharmacy 'train' and did such a good job that he got an 'honorary pharmacist' sticker. After lunch, he made a pillow and shared it with the entire group of families and staff. He stood on the chair, held up his pillow, and was embarrassed to speak. Our social worker helped him through it and Robert and I couldn't have been prouder. He made a new friends that he is still talking about including; social worker, doctors, nurses, and peers.
In our meetings yesterday, the topic of cancer forcing 'lives' to become more public was addressed and the challenges that surround this new reality. For me being 'public' about our situation and emotions has been the easy part. We want as many people to know in the hopes that- the more people who know- the more people who will project positive thoughts and prayers. Our theory also extends in the opposite direction- we like to say- "don't tell anyone who doesn't like us, we don't want the negative energy." The challenging part has been finding ways to thank everyone for the amazing amounts of support that we have received and asking others to help in ways that we never needed before. We hope that through this blog we can continue to keep everyone informed and continue to articulate to you the gratitude that we have in our hearts.

Feb. 7th

Robert takes his last dose of chemo tonight and looks forward to 23 days off. He did well and worked through the week. We did hear back from the oncologist and the doctors have decided to conduct monthly MRI's for the next 3-6 months a least- to monitor the white spot that was seen on the MRI in Jan. They all believe that this spot is most likely irritation and not tumor, but want to be proactive and cautious. We appreciate their attention to detail and will do what is necessary.
Someone shared this and I wanted to pass it along. I thought that this was so inspirational and relevant:
We are always talking about HOPE! Wikipedia defines: "Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope implies a certain amount of perseverance — i.e., believing that a positive outcome is possible even when there is some evidence to the contrary." It goes on to say that Hope is spiritual gift from God - divinely inspired from faith rather than just positive thinking and optimism.
We continue to hold on to hope. We thank everyone for the support that you have provided that allows us to maintain hope.

Feb. 4th

Robert woke up feeling well and made it to work on time today. We were hopeful that he would tolerate the increased amounts of chemo well and so far so good. He was very tired this evening and has already gone to bed. The boys used to fuss that we got to stay up later then they did and now they can no longer argue this with us, as Robert is usually going to bed right behind them. We will post again soon. Thanks for checking in.

January 31st

After countless numbers of phone calls- Robert has received all of his medications and will in fact begin his second round of chemo on Sunday evening. Even with the increased dosage the doctors anticipate that he will tolerate it well since he did not have any problems during the first round. He will take anti-nausea medication each night prior to the chemo pill. The hope is that the anti-nausea pill will cause fatigue and he will be able to sleep through the night without suffering from any side-effects of the chemo. Robert plans to maintain his work schedule. Those of you who know Robert well- understand that this is not a surprise. As usual- I continue to remind him to listen to his body and do what he can do.
Robert said it well on Tuesday evening (the day after our MRI) "Yesterday was a good day, and today was a good day." We hold wonderful memories of the past and we move forward with hope, but we live in the day. We take each and every day and find gratitude for many things.
I heard this statement on a television show and it jumped at me and I have been thinking of it often, "Life is not when or then, it's now." We can and have spent time thinking that 'when' we get something or 'when' something happens, 'then' we will be happy or We are wishing and waiting for something to happen at a certain point in time. Experience has taught us that it is important and more powerful to live in the moment. Do what you always wanted to do. Recognize and value the power in today. and --- love and appreciate the people in our lives.
Love to all.

January 28th

We have done the 1st MRI since the first round of treatment and we are happy to report good news. The doctor compared today's MRI with one that was completed in Nov. and it appears to show that surgery and treatments have/are working. There are still some 'white' shadows around the area where the tumor had been and they tell us that this is either residual tumor or irritation from the radiation treatments. The hole where the tumor was, has filled in with spinal fluid and this is apparently what they want to see. There was a new white spot that was showing, but the doctor was not concerned. She believes that this is irritation and not a tumor based on other medical factors. She was very pleased with the scans and felt that this was a good report. Robert will continue to have scans every two months forever.
Robert continues to amaze the doctors with his speedy and otherwise uneventful recovery. He has not suffered from many side-effects often associated with brain tumors/surgery and the medications. His physical exams demonstrate that his strength has returned to acceptable levels, his neurological functions are good, and he looks and feels good. I think that the medical staff is beginning to realize what we already knew- Robert really is a super hero!
Ok- enough medical talk. We want to thank everyone for your continued support and good wishes. We find strength in the actions, words, and prayers of our supporters. We are grateful for the daily moments of joy and happiness. We are trying to stay focused on the things that are within our control and recognize that the rest is in the hands of a power higher and stronger then us. We believe in the power of positive thinking and maintaining hope. Being surrounded by such a huge support network helps us to maintain strength even when it feels like we are struggling to complete the simplest daily task. Robert and I are celebrating todays report and continue to pray for continued for success. Thanks.

January 26th

So my four week hiatus from radiation and chemotherapy is over. It is now time to start things up again. We are going to the hospital on Monday to meet with the doctor. She will go over my MRI & blood work that will be completed earlier that morning. I then will begin the six month chemo process of five days on and twenty-three days off.

I returned to work two weeks ago. I am working eight hour days. I feel pretty good during the day and get tired when it is time to go home. I am going to bed around 8:30 - 10:00. I feel like I have more energy each day.

Tammy & the kids are doing really well. They are extremely supportive of me. I know that I can be challenging at times, but they just roll with the punches. Who could ask for anything more!

Thanks for all your support and we will give an update early next week to let you know how things are going.