June 29th

It is difficult to describe what is happening anymore. My focus is not what is happening or why it is happenig - but HOW it is happening. Robert continues to struggle with the symptoms related to brain tumors. The details are not as important as the impact that it has on Robert and all of those who love him. Each day seems to bring increased and new challenges that force us to find strength from deep within to confront and handle. Honestly - I hate what is happening and there seems to be little we can do to stop it. Our attention now is on regulating medications to help Robert to feel better. We are currently staying at the Gilchrist Inpatient Center (Hospice)to work with the doctors to find the right types & dosages of medications to help Robert. We have been here since late Friday night and will hopefully be home within a couple of days. Our attention will be on the moments of peace and happiness that come from being together. I reread what I have just written and it sounds negative, but know that we always hold love in our hearts and hope in our souls. It is with the support of you that we feel the possibilities of positive energy at work.

June 24th

It is difficult to know what to write anymore. So much seems to happen within each day and it is difficult to find the time to do anything else unrelated to taking care of each other. I made a comment the other day, "Today is a good day" and then I realized that this is not necessarily a complete truth or perhaps we often think of this statement incorrectly. It is not the day that determines whether a day is 'good' or 'bad'. It is not as if we know that Fridays will be 'good' just because of the fact that it is Friday. Isn't the day good just because of the fact that is has arrived? Isn't it our perspective of the day that determines whether it is 'good' or not? We all know that events of the day- make some days feel better and easier then others. We can not deny that some moments have more powerful emotions of comfort or discomfort and it is undeniable that we will feel the effects of different events differently. What I am trying to comprehend and focus on is that - the days that seem 'bad' hold powerful lessons that we must use to help us to appreciate the 'good' moments that happen later - even within the same day. No day is full of 'good' or 'bad'.
Robert is well under the circumstances and it is difficult to explain the changes that occur when suffering from brain tumors, lymphoma, and the effects of medications and treatments. The difference is this - It is one thing to know that you have brain cancer - It is another thing to see it happen - and now we are seeing it happen. Robert is determined, stubborn, and decisive in his fight to complete this week of brain radiation. Chest radiation was complete last week. Last week we had to stop the oral chemo and were unable to get the avastin due to results of his blood labs. We hope to continue with avastin again next week. Effects of the diseases that he is battling are making things more challenging. We work to continue to focus on the fact that we will do many of the same things that we have done - but in a different way and with tools to help us. We have added new support people to our team and know that they will take over responsibility with some tasks to free us to focus on being together.
We continue to be thankful for the many people in our lives who think of us. We could not even begin to describe the feelings that we experience when being helped by so many people in so many ways. Please know that our appreciation is present and we may not be able to communicate it directly right now - but we hold it within our hearts.

June 17th

I realize that it has been some time since my last posting and that is only because some days seem to pass with the inability to do everything that seems should be possible. It is not that we are oblivious to the world around us, it is that we are unable to keep up with the world around us. Our focus is taking care of ourselves and trying to maintain energy to fight the fight. I often describe myself as a cartoon character the is 'moving but not going anywhere'. Nothing seems possible these days without the help that we have received from friends & family that have jumped in to do everything from cooking, cleaning, supervising the boys, and spending time with Robert and I to relieve us- to rest and try and catch our breath. We are grateful for the friends who will travel to visit. The friends & family who plan for experiences - for our family- to help us find fun in the days and to build memories to last a lifetime. The friends who organize and execute plans to hold fundraisers to help to find better treatments and a cure for brain cancer. Our awareness of the people who care for us is not lost and we are incredibly grateful to be cared for in ways that make us all appreciative of each other and the relationships that we have.
There are many positive factors involved in this most difficult set of circumstances. Robert will have completed two weeks of brain radiation after tomorrow and the side effects from treatment appear to be less severe then we had imagined. Robert has good days and bad days and it is difficult to determine what causes the bad days/moments. I am convinced that it is a combination of factors that impact his well- being. The harsh radiation, the multiple medications, and the effects of tumors? Robert is well under the circumstances and he is the most couragous person I know.
We are focusd on each day as it arrives and recognize the importance of grabbing onto the moments of simple pleasures, moments of connectedness, and moments of interaction. A smile, a laugh, a roll of the eyes, a kiss, a hug holding hand, and lying together communicate more then any words. We are grateful for opportunities.
The boys are remarkable and Robert and I are amazed by them everyday. They handle the changes with a courage that is hard to imagine is possible from children who are so young and developmentally (apparently) self-centered. I know that they are scared and we can not take that away. We talk often about what is happening and they accept it without frustration, anger, or resentment. They love - just to love. I am sad for what has changed, but we work to do the same things in a different way. They drive me to find the -new new normal- and we all benefit from it. We have much to learn from children.
Thanks!

June 7th

Robert has had a good weekend and we took time to play card games and video games with the boys. Those moments when we are all awake at the same time, together, and able to have interaction are the most precious moments for all for us. It is difficult to comprehend the many changes that have occurred over the last two months and we are doing our best to focus on the moments that happen now - instead of looking back at what has changed and is missing.
The moments when we hear words of encouragement, the moments that we are given hugs, the moments that we read notes of hope, and the moments that we are allowed to share our story give us strength to deal with the pain. The moments that the boys are being entertained and loved, gives us time to sort through and deal with the logistics. Knowing that so many people care has given us the ability stay energized when we felt that there was no possible way to find energy to keep moving forward. We carry all of the good wishes and positive energy with us and each time we go to the hospital we are honored to have you traveling with us. We know that we are not alone and it is comforting. Thank you.

June 4th

I sit to write and it seems impossible to know what to say and how to say it. So much has happened over the last two months and our heads and our hearts are spinning. We do our best to get through the long days at the hospital and have energy to get up and do it again the next day. We fight for the energy to play with our boys in the evenings and weekends and are thankful for the many people who help in caring for Bryce and Trey. Forgive us for not responding to your thoughtful notes, comments, e-mails and phone calls. We are so incredibly grateful to know that we are supported by so many and desperately want to thank everyone for the acts of kindness that have been shared with us.
The medical aspects of Robert's diseases are so complex and challenging that is is to much to write about. My emotions are heavy and it is to difficult to describe the details. Robert is very brave and we are doing everything to work through the physical changes and the emotional battles that we are confronted with. Love to all!