|One of the swimming days when we got 3 kids in the pool at the same time|
So, an update since the post in May goes something like this:
We had 27 radiation appointments at Huntsman to deliver shrinking radiation doses to Owen's brain tumor, a small tumor in his left hip and also some irregular cancer activity in the heads of both his femurs. Those appointments finished approximately the end of the first week of June. During that time he took an oral chemo that was mostly just fatiguing and caused some nausea. The chemo mixed with the radiation was especially fatiguing and Owen was able to do a little activity in between naps. He did quite well considering the treatment duration. Lucky for him he has MANY friends at Huntsman so it was nice to see their friendly faces each day. He lost his hair, again. That was due to the brain radiation and it was rather interesting how precise the target beam was because he kept a funny line of hair at the bottom of his neck that was exactly straight across. I should have taken a picture. We call it his mullet. During the radiation we consulted with many doctors and those we trust who have also been very helpful and supportive in our fight. Many colleagues of our doctors and radiology specialists met and at the tumor board discovered that Owen may be best treated through a clinical trial that is taking place at a few locations across the country. As we researched further into the possibility of being accepted into the study (based on cancer type, areas of occurrence, Dr's recommendations, sites available doing the study, affects and outcomes) we felt like it was his best hope as well. Since then we have been working closely with our Dr to prepare and we are crossing our fingers that the acceptance into the study will come and that timing will be right for him to begin. The hardest part of the study will be to arrange traveling and accommodations to the study site for treatment. There is not a location in the state. There are several locations across the country however, and most conveniently in CA. Until we get accepted we really don't have a way to determine what the demands of travel will be and how we can make it possible. We just know we will do it somehow and with whatever means we have or can get. The most recent news is that we should hear something for this round, MONDAY MORNING - TOMORROW! We have prayed and so many others have prayed that Owen will be able to take part in the study. Thank you for your support. We have faith that if it is the right thing, it will happen.
Luckily, after the radiation treatment we were given a couple of weeks of treatment free, appointment free time that we could spend time as a family doing some summer things. We even took a little trip to Carlsbad, CA, which is a place we love so much. We had generous friends and acquaintances who were able to share some connections they had to help us take our family and more importantly, Owen, to Legoland and to help us with a great near beach location for a week. We loved our last minute trip and I have to admit I didn't realize how bad I needed it until we were there. We spent our time doing whatever, whenever and however we felt which is truly the definition of a "vacation" in my opinion. No big plans, no have to be somewhere or meet someone and meal times and wake up/sleep times were not in accordance with the clock. Now that's a vacation dream. Life for the past year or so has been nothing like that, and not that any family gets vacation time often, but it was void of anything medical and especially sickness or inability to go. WOW!
|The Lego cars were his favorite|
|The Carlsbad Seapointe Resort was a fantastic place to chill and play|
Owen had a sleep study done last week. Those are not fun. The sleeping test part is fine. Keeping a kid awake with only 4 hours of sleep prior is torture for the parent and the kid. The rules were that he could sleep the night before, but for only 4 hours. We chose his 4 hour block to be from 2-6 am. We stay up late usually and it seemed easier to extend that than any other times. It was rough. Not only was it hard to stay awake til 2, it was even more difficult to stay away and stay busy from 6 am to his appointment time at 1pm. Ouch, foggy brain, OUCH! We pretty much did it. I let Owen sleep in the car for about 15 minutes on the way to Primary for the study because I felt so bad for him. I watched his head bob over and over again in the back seat. It was painful. Good news after the study is that they saw no seizure activity and were able to lower his medications. It is a slow process to ween meds of that nature, but it will be great if we can get him off of them to help with his energy level. He will still take chemotherapy orally in intervals if the study doesn't come through this round, but for the most part he is taking very little to manage symptoms and we are still using essential oils in addition (topically). They are helpful for sure.
|One of the tournaments with his sister! 2 championships in our family so far this summer!|
It has been a whirlwind of a spring and summer with the unknown future of treatment and outcome. We have done this before. We can and are doing it again. I'm usually in good spirits about how things are going but occasionally I feel like there is just no way this can be happening. Owen is typically more than positive and as resilient as ever. It has been hard to consider school, fall plans and all else that is coming up simply because we don't know how or what Owen's health will be. Those times are frustrating for me. For today, we just try to take advantage of the health and happiness he has. He is still hoping and planning for the Make-A-Wish Disney Cruise that they were unable to grant him during the spring or summer due to availability and timing. It is set for the fall. We hope and pray that he stays strong during whatever treatment plan we undertake just so he can be healthy enough to go. It is still his main wish. For now we will just continue to enjoy summer. Hopefully the news about the study on Monday will give us a new focus and anticipation of what's next. Please keep him in your prayers. Thanks to all for your support.