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

Message from Rich and Andrea - November 16, 2009

Thank you for indulging us with yet another update. It really is great to be able to post these updates and to know that people are interested and are continuing to pray for Julian. Those prayers really do make a difference! For example, yesterday our little guy wanted to go to our neighborhood park for the first time in a year. Walking there is still too much, so we drove, brought his trike and he totally impressed me with his energy as he climbed up the playset and went down the slides and repeated that about 5 or 6 times. He was happy and playful the whole time, and then rode his trike a lot farther up the hill home than what I had expected. Of course, he fell asleep at 6:30 p.m. and was pretty grumpy today until after his 2-hour nap, so he may still have been recovering from yesterday's outing. But it is so wonderful to see him doing more of the things he used to do. Jody, his nurse practitioner, recently said that he is doing amazingly well...making the kind of physical progress that they usually see once kids are finished with their treatment. And it was great for our friends who visited from Holland and also from San Diego last week to see how well Julian is doing.
Unfortunately for him, though, he is still vomiting 2-3 times per night. We're trying to get that under control. The MD says he's taking all the right meds in the right doses so he shouldn't be getting sick so often. He does well during the day, but we run into trouble after 2 a.m. We're also on a plan to increase the amount of (NG)formula he receives during the night so that by December, we can wean him off the IV nutrition that he's been getting each night, as well, for the past 11 months. But, with his recent chemo, the slight increase in formula may be a bit challenging to maintain right now. He's had such a long history of vomiting, since even before his diagnosis, that his stomach is pretty vulnerable.
As well, Julian was seen by an ENT last week who officially prescribed hearing aids (for both ears). He's been such a trooper throughout everything, I expect he'll adjust fairly well to this development, too, and will hopefully be happy to hear a bit better.
Finally, Julian will have his MRI this week, on the 19th. This is the follow-up to the one they did last month. The purpose of it is to better examine that little 'tail' they saw last time. Trusting in Him to make it all good.
Feeling a lot of peace right now and have stopped reading and obsessing too much about medulloblastoma. God has been so good and he is blessing Julian with strength and endurance and a tremendous recovery. We are grateful.
In Him,Rich and Andrea
P.S. Months ago, when we were able to share a room at CHOC, our roommate was Cody Day, a really neat 13-year-old who had relapsed after a 2-year remission from medulloblastoma. Since then, Cody has gone through so much and they almost lost him. He is now doing much better, and will be celebrating his 14th birthday on Dec. 9. His mom has asked folks to send him a birthday card, so if you want to participate, please send to Cody Day, P.O. Box 5224, Laguna Beach, CA 92652.

Message from Andrea - November 6, 2009

Hello friends,Just a little update from room 328 at CHOC. Julian is getting his 7th round of chemo right now. He arrived at the hospital this morning in a perky mood, but got sick pretty quickly as soon as the chemo started. It could have been caused by a drug he received at the same time, amifostine, which can potentially prevent some hearing loss in children going through his type of treatment. This is the first time he is receiving this drug, but it sounds promising. His recent audiogram did show that the normal range of hearing is now being affected. After a few hours of feeling very yucky, he started to feel a bit better, at least well enough to play a short round of drums with Eric, the music therapist. Then tired and yucky again, and then a moment where he wanted to sit on a whoopie cushion just as his nurse entered the room. He's trying to fall asleep now, but the tummy's still a rollercoaster. We hope to go home tomorrow.Goodnight and blessings from Julian and Andrea

Message from Andrea - November 2, 2009

Our family really appreciates the prayers, cards and good wishes from you. They just make our day! Julian received a couple of fun care packages last week and his eyes lit up when the mailman delivered them. It makes him so happy and really helps him move past the many visits he often has to make to the clinic and infusion center. Like last week: he had IV infusions on three separate days. Monday, an IV antibiotic, Tuesday, whole blood, and Friday, another IV antibiotic. He was doing great the first half of the week, but by Wednesday night he had some kind of bug. Threw up throughout the night, felt warm, but never had a fever. Thursday night and Friday morning, same thing but this time he did have a fever. Thankfully, he could go to OPI (Outpatient Infusion Center) and he spent half the day there connected to an IV pole with a very effective antibiotic. Since he never spiked a fever the while we were in OPI, he was able to go home that afternoon. He was so glad that it was still daylight (he can't tell in the room we are usually in) so he could ride bikes with Nolan in the afternoon. His white blood cells are coming back up so has at least he has some fighting power against infection and the rest of his counts are looking better, too. He was pretty tired this past week and we had to cancel his visit with his school teacher twice, but he did well last Friday and was getting very excited about Halloween the next day. He definitely has made the most out of his skeleton costume because he would put it on to scare the neighbor girls just about each night (yes, he mustered enough energy do to that as much as possible!). On Halloween, he was so excited to go trick or treating, but was content to go home after just three houses. Since our last update, his hair has fallen off again. Julian goes in for another round of chemo this Friday and his MRI is scheduled for Nov. 19. Thank you in advance for your prayers for him: that the chemo would not make him too sick and that it would not damage his hearing any further, and that the MRI will come back clear. Thank you so much for your prayers and your encouragement. We love you! -- Rich and Andrea(PS: There are some newer photos now on the Photo Gallery)