Thursday, December 22, 2011

It has been such a long time since we updated this blog. There is so much we failed to report about our experience. I will eventually try to update the blog with things we missed, but for now, here is the latest...

Will's chemo and radiation were finished up in January (2011). It was a very tough 7 months, we will never fully understand what he went through and the trauma and stress it put on his body, but the therapies are finished. He has had 3 follow up appointments since and is totally clear as far as they can tell. He is feeling healthy and has gained back his weight and some. At 6'2.5" 170 pounds was way too skinny. He is back up over 200 now and looks great! He is still working on overcoming the chemical changes his body endured, but for the most part, he is doing really great. He will always have to be careful as he has permanent heart and lung damage from the radiation, but we are told that most of the damage will heal in time. We are just grateful that he is here with us. He is a joy to have around and we love his playful personality.

As for the rest of the family, we are all back together for now. Sam returned home from his mission in September (2011) and is loving sharing a room with Will. They have a great time together and enjoy each others company. They have always been best friends. Mary Kate is on her way to college in January and will be very missed as she is the consummate second mother to our brood of boys. Hunter and Matt are enjoying having the family back together and we are all thrilled how this whole trial worked out in the end. I am sure it will take time to get over all the effects, both emotionally and physically for all of us, but we are grateful for the many miracles, mighty and small, that have taken place to get us where we are now.

Thank you for all you have done for our family. We could not have made it through the trial without your support, love and prayers.

Saturday, January 8, 2011

On to Radiation!

Chemo is finished. We had a party to celebrate the week after Christmas. It was great to have that final day of chemo over for Will. I hope he never has to do it again...EVER!

Chris, Will and I met with the oncology radiologist 2 weeks ago and then again this past Tuesday to get things ready and map out the radiation. They made a plastic mesh cast of his head and shoulders. It is anchored to a device that they screw into the radiation table so he can't move during the treatments. It is fascinating that technology is so advanced that they can do all of this. We were told that they have learned how to bend radiation around organs. What a blessing because most of Will's bulky masses were around his heart and lungs and neck. They told us they can't completely avoid them, especially since Will had masses inside his lungs, but they will be able to avoid much more of the sensitive tissue because of technology. They also did the baseline CT scan to help them map out where they want to irradiate. The oncology doctor, Tiffany Chang, called yesterday and told us that Will will be on 21 gray radiation. Apparently it is at the top of the scale for pediatric radiation, but adults in the past have gotten 31 gray for this condition. The head doctor of the study Will was almost on, as well as the entire tumor board, are in concurrence that the extra radiation shows no signs of benefit and in fact might be cause for future problem in patients who are young. They don't worry as much about older adults receiving higher doses because they don't have their entire lives ahead of them and if there is bone deterioration for over exposure they will never know it because they will be gone before it happens. The doctors all felt that the lower dose is best since William is at the beginning of his adult life. We have been praying for them to be inspired and to know the dosage amounts and the length of radiation and that they would be as conservative as they possibly could considering Will's condition. They are also opting to treat only the areas that were the bulkiest. This means his chest area around his heart, lungs and trachea and also his neck. They will not be crossing into his abdominal area, which can cause so many problems, from colon cancer (secondary cancer) to sores in his stomach etc.. We feel very good about all of this. It means minimal to speak...with minimal side effects and lower risk in the future for secondary problems. We feel so grateful to have such exceptional care. The doctors at UCSF are cutting edge and working to increase quality and quantity of time for the patients, hopefully complete cure with no future recurrence or secondary cancers. We are grateful they are so conservative and we are confident that this is the right path for Will. Thank you for the months of prayers. We feel them so profoundly. Will has been a trooper. I can't imagine what he has been through. I hate watching him have to struggle through this, but I am grateful that it has not been worse. We see so many children when we are in SF who are so much sicker and it is heartbreaking. The one bright spot I see in all of this is the compassion and empathy that we all gain through this and especially William. I know that he has a bright future ahead and that this experience will bless his life and help him to work with others and love them deeply. What a sweet boy!

I ponder on the meaning of all that we have been through as a family and that which Will has gone through personally. The conclusion I draw is that we are all in the fight of our lives. No one is exempt from the struggle. Our trials reveal to us who we really are. If we don't like what we see, then it is through the grace and love of our Savior that we can change this. We are here on this Earth to learn and our best teacher is most often adversity. God knows how strong we really are and has promised that He will not give us trials beyond our capacities to conquer. To some it may seem odd that a loving God would allow us to have such trials, but if He took away every trial we face we would never grow, never learn. That would be a tragedy. Despite our circumstances, we are trying hard to keep good attitudes. No one displays this better than William. I watch him in his struggles and see the man emerging from this boy I love so dearly. He is truly amazing and he is my hero!

Thank you again for your love, prayers and faith. We are truly blessed to have so many loved ones praying for him and for our family. We love you so much! Happy New Year!