Sept. 12th

Our days have been busy and we have managed to keep moving at an energetic level- until 8:00pm. By 8:00 - the boys are in bed and Robert and I are close to it. We went to Ocean City and had a great time. We left on Fri. and returned on Tue. Yes- Tuesday. I had told many people that we would return on Monday and truly believed that this was accurate. It wasn't until we were at the beach that we realized the reservation was made until Tuesday. I had made the reservations and had incorrectly written it on my calendar. Oh well. Robert took and extra day off of work, Bryce missed another day of school, and Trey & I gladly accepted an extra day at the beach.
Since returning- life has picked up the pace and does seem to be moving faster then is possible. Robert has returned to work, Bryce has returned to school, Trey has attended two days at preschool, and I have made two trips to Johns Hopkins - scheduled appointments. Robert had his eyes checked again at the Wilmer Eye Institute at Hopkins. He got another good report. His vision is stable and there were no indicators of pressure on the brain. He will return in another six months for an exam.
As we come up on the 11 month marker of the day that Robert was diagnosed with a brain tumor, we are thankful for the lesson learned, the recognition of love and support, and the understanding that we have been and are blessed with good fortune. This is not to say that we are thankful for the diagnosis, but we are thankful for the increased awareness of the good fortune that still exists in our lives. We have our family and we have love.
It is sometimes difficult to watch our children grow and change and become more independent. I find myself - having to remind myself - that their changing behaviors and attitudes indicate that they are growing and developing as they should be. The fact that they are succeeding in new environments without us, means that they have learned the lessons that we have taught them. The fact that they are growing and changing physically, means that they are healthy. The fact that we are watching them change over time, means that we have had valuable time with them to build memories. I am trying not to hold on to the past or think to far into the future and am trying to enjoy the present. May you all have a great day.

Sept. 2nd

We have received good news today regarding Robert's MRI scans. The oncologist reports that all scans look good. She noted that we couldn't have gotten a better report. We are thankful for the excellent report and for the friends and family that we get to share the news with. We are thankful for the doctors who are willing to listen to us, work with us, and communicate with us in a way that comforts us. We recognize that they are caring for Robert and the family as well. The attention paid to all of us, both physically and emotionally, keeps us strong and ready to focus our attention where it needs to be directed- on living and living well. Thanks.

Sept. 1st

It was great having a long weekend and having Bryce and Robert home on Mon. We had a relaxing weekend and are gearing up for the rest of the week. Which brings me to my reason for posting. Tomorrow, Robert will be having another MRI. As always I will ask anyone who is reading this to please send your best wishes forward and/or pray for a good report. We will not be meeting with our oncologist and will post the results as soon as we can. Hope you all had a great weekend and wishing you the best. Thanks so much.

Aug 26th

We apologize for the delay in posting. I could make many excuses for the absence of postings, but I will spare you all of the details of that. As my intelligent husband reminded me- I can post brief messages to let you know that we are well and post again later with all of the deep/emotional thoughts that I typically include. Today's posting will be a combination of both.

As usual, life passes quickly and many changes occur before we have often processed the facts. Bryce started kindergarten on Monday and it has been both exciting and emotional. Robert and I placed him on the bus on the first day of school and watched him ride away without us to protect and care for him. We had to have trust in ourselves- that we had taught him the skills to be independent and successful in school. We had to trust in him- that he would behave appropriately and find his place in school. We had to trust in the school- that they would take care of him, nature him, and help him to learn. Luckily, Bryce has been excited to go and is eager to exert his independence.

I write about this because the home/school relationship is similar to the home/hospital/relationship that Robert and I have with Hopkins. We have had to spend a lot of time in the hospital, learn the 'new' rules and regulations of treating Robert's medical condition and learn to live with the 'new' normal that has impacted our family dynamic & family relationships. We have had to place our trust in the medical professionals- that they will nature and care for us. We are incredibly thankful to be working with the most caring and brilliant people at Hopkins. We ask that you continue to wish for Robert's good health and ultimately a cure. Thanks.

Aug. 12th

It has been some time since our last post but we have a good reason for that. Robert and I went to Rhode Island and we have not had much new information to share beyond that. Robert and I had a good time on our trip and it felt like we had been away forever. That is the longest time that we have been away from the boys. The boys had a great time without us and it was like they were on their own vacation. I tell everyone that they didn't miss us and that made it so much easier to be away. They were certainly happy to see us when we returned, but really didn't mind that we had been away for five days by ourselves. Knowing that the boys were being cared for and entertained made it so much easier for us to relax and enjoy our time away. However, I have told our neighbors and my sister & brother-in-law that- they have spoiled the boys- because they had so much fun with them- we (Robert and I) are now- just boring.

Despite obstacles we were able to go, relax, and have a good time. Some obstacles included the fact that Robert was diagnosed with an ear infection and I was diagnosed with strep on the morning of our flight out. We both got medications and packed them along with the countless number of other drugs we had already packed and headed for the airport. Other then Robert experiencing some pain on the first flight, we felt well during most of the trip. Another obstacle- My luggage did not arrive in RI. I'm not sure who was more upset. Robert kept checking with the front desk at the hotel and arranged to have them call us when it arrived- I think that he was scared that I was not going to relax until I had my clothes with me. Robert said that he wished that it was his luggage that had been routed to another airport and I agreed. Seriously, Robert and I just tried to accept it as another glitch to laugh about and kept moving as we were determined to have a good time. The luggage arrived around 3:30 the next day and I was back to being indecisive about what to wear. We had great weather beside the one rain storm that we got drenched in and really felt that the sunsets were there for our own personal viewing.

Honestly - we feel that the trip couldn't have come at a better time. We had just received good news from the doctors, the boys were content to be without us, and we were ready to take the time. We feel fortunate to be physically able to travel and to have others support us in being ready to travel. This trip would not have been possible without the support of some very caring and thoughtful people who obviously have kind hearts. We did not take the opportunity and the time away for granted and hope that we used the time to refresh ourselves and be stronger for it. Take care and may you all find peace in your lives.

July 30th

We are spending the days enjoying being with the boys and soaking in the funny things that they do and say. We are observing the new behaviors - both the heartwarming and teeth clinching behaviors - and are able to laugh and smile at the fact that they are all signs of healthy and developmental appropriate children. We are happy to be able to find and focus on the amazement of how quickly they grow, learn, and mature. Their innocent perspectives, curious questions, and unfiltered responses keep us laughing.

Robert is feeling well physically and emotionally. We are content in the moment and of course we continue to wish for continued contentment. Robert and I are taking a trip from Thur. to Tue. to Rhode Island. We are looking forward to the time to relax and be together. The boys are excited to 'vacation' without us and we are thankful that they are so comfortable to stay without us. Although it is sometimes difficult to plan to be away from the boys - both emotionally and logistically - we recognize that we all need time to regroup, reconnect, and refresh ourselves. We are thankful for everyone who helps us to function each and every day. We are not working alone here and we are thankful for the support.

July 21st

Your prayers and positive thoughts are working. We meet with our oncologist today and we got an excellent report. She is beginning to realize what most of us already know- Robert is a superhero. I wish that I could articulate to you what the doctor explained to us, but the emotions and my lack of medical knowledge make it impossible to repeat the amount of detailed information that she shared with us. Suffice it to say- she explained that all pictures on the MRI scans showed improvement. She told us that she would have been happy if the scans had remained the same and yet she saw improvement across all scans. She stated that this is rare and so she was very pleased. We are grateful for this report and grateful for all of the people who share in our happiness. Thank you for giving your time to reach out to us through your thoughts, prayers, and good wishes. We take this positive report and the joy that comes with it to sleep with us tonight as we dream of future happiness together. Sweet Dreams!