Message from Rich and Andrea - November 25, 2009

Happy Thanksgiving
Posted Nov 25, 2009 9:45am
Didn't want to wait too much longer to send another update because Julian's MRI from last week looks good, said his neurosurgeon. There was no change from the one done a month prior. That little 'tail' was still there but Dr. Loudon said it could be any of a number of things like a vessel or tissue, but he didn't believe it was new growth. So....we are abundantly thankful! Even if it had been something, I know we are in the arms of the One who is fully in charge of all things, regardless of our understanding and reasoning. This morning, Julian is feeling much better than recently. He got his 'boost' yesterday afternoon: a unit of hemoglobin because his red blood cell count had taken a big plunge again these past 10 days (thank you wonderful blood donor, whoever you are -- Lindsey? Really, it is incredible that we can get a unit of blood the same day as requested). Now, he'll be able to play with his little friend next door and have a much happier disposition (I know how grumpy I get when I'm exhausted; I'm sure chemo-induced tiredness is much worse). Monday we go back to Providence Speech and Hearing Center for another audiogram and hearing aids. I can definitely tell his hearing is declining since he more often misses words or sounds. He has another round of chemo scheduled Dec. 18, the same kind that is doing the damage to the ears, so we appreciate your prayers for minimal impact as he moves forward throught these final two rounds (the final one is in January-- Yippee!). Sending you wishes for a very happy Thanksgiving.
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Since I (Andrea) usually write the updates, Rich wanted to share his thoughts, as well, so here is his post:

JOURNEY WITH JULIAN
What do you do when your life changes forever? Do you trust in the Lord? Is there a choice? There are other choices, of course, but your faith really gets tested when you encounter childhood brain cancer with your son. There is no choice, except to “hold on tight and never let go,” a phrase I ask Julian to repeat to me often, and ask the Lord for strength, mercy, healing, patience, and among many other things, that despite what Julian is going through, he will maintain his innocence and enjoy his childhood. PLEASE JOIN ME IN THAT PRAYER.We had no choice in Julian incurring a brain tumor, resulting in catastrophic and life-threatening conditions, followed by endless months of treatment, and if he survives, permanent, lifelong changes that effect myriad parts of his body, including his hearing, spine (growth), brain, nerve endings, kidneys, and a long grocery list of other possible alignments. But faith in our Lord has given us the strength we need to handle this situation. The victories are few, but loom large in his parents’ eyes. While living under the conditions of a “new normal,” and constantly being told by doctors not to think of the future and the physical, mental and psychological damage from the side effects of high-dose radiation and chemotherapy, a grueling, painstakingly torturous, 55-week journey of treatments, I have come to realize that, as a father, I have no control over anything, and faith is all there is. After Julian’s treatments we will continue to walk on egg shells and pray the cancer doesn’t come back. For the next 10 years and 9 months, after his treatments, Julian will not be out of the woods. Our life BBT (Before Brain Tumor) will never come back, or be the same. Things will always be different. MRIs are constant, every three months at this rate, check-ups, evaluations and the like. He will be studied by doctors his whole life, assuming he holds on and lives a productive life. Doctors think it will be another six months after his treatments until he starts eating again. There may be different chapters, but this book with always be open in our lives.There are constant flare-ups and tantrums over the most innocuous things, because the chemo causes him to have wild mood swings and act in an unpredictable way. He probably still has posterior fossa syndrome – heightened sensitivities and unpredictable, emotional mood swings. He has a difficult time regulating his stress levels and emotions. While still trying to “raise” our child like a 6-year-old (5 when his brain tumor was discovered), it is way different with a young child with cancer, and way more difficult as a parent. On one hand, you want him to learn basic elements of life, things he has already learned, like sharing, but often the smallest things cause flare-ups and this is not good for his head and system, to get so upset. We all do our best to try to stay calm, cool and collected, but it doesn’t always work out that way. In fact, we end up the losing side most of the time. We are beat up as parents. I cry a lot, almost every day. Sometimes the simplest things turn into an impossible situation, and this happens often. Trying to read him and understand him is a gift, as a father, I felt I always had with both boys since their birth. Aside from reaching heaven, my goal in life is to be the best father I can be on earth. That being said, things that once were simple or normal in home life are now an extremely delicate balance or tight-rope act.We do all we can, stay positive and trust in the Lord.Thank you for encouraging and praying for our family.
Rich