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.
************
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)

Message from Andrea - October 19, 2009

Ducks, chickens and RBCs
Posted 17 hours ago
So glad we went to CHOC today for Julian's monthly IV infusion of an antibiotic because every time we go to a clinic or infusion appointment his blood is drawn and we immediately find out more about his current condition. Today we learned that his white blood cell count is very low right now, and so is his red blood cell count. So, he'll be receiving a transfusion of hemoglobin tomorrow morning. On Thursday, he'll have labs drawn again during his scheduled clinic appointment. Hopefully they'll show that his WBC and RBC counts are creeping up. He loves to go on outings to Fresh and Easy and to the library, but we'll have to limit our trips right now to the backyard or maybe to the nearby duck farm to feed the chickens (no sign of ducks lately). He's been doing so well lately, except for tiredness which can be explained by his low RBC. His hair is starting to grow back again (it's in the 'fuzz' state) and he is doing more and more of the things he used to do. Even the vroom vroom sound effects he makes when playing with cars and Legos have come back. He has really enjoyed the late afternoons on the driveway, riding his trike while Nolan and our neighbor friends Maya and Lilly ride their scooters. It's amazing how gentle the kids are around him. He has some trouble with his emotions and can't keep up with the kids physically which causes the tears to flow, but the kids will slow down and, at least for now, let him win when they play a quick round of hide n seek or red light/green light. No word yet on when the next MRI is scheduled, it should be done within the next four weeks, and he'll have another audiogram before his next round of chemo to see how his hearing is compared to his last test. I don't really notice it getting any worse, so hopefully that will be good news. One spooky thing: Julian wants to be a skeleton for Halloween. We were really glad when, for the longest time, he said he would be a duckie for Halloween. But now he wants to scare those same sweet girls who play with him so nicely. But he promises that next year he will definitely be a fuzzy yellow duckie.

Message from Andrea - October 9, 2009

Dear friends, just wanted to send another update as the Tumor Board met this morning and reviewed Julian's most recent MRI. Thankfully, they did not spot anything along the spine, but they did note something at the tumor site in the brain that they had not seen previously, a little 'tail' on the cavity where the tumor had been. This hadn't been there in earlier MRIs. Our doctor said the group didn't think it looked like cancerous growth because it normally isn't shaped that way, but they want Julian to have another MRI in one month. Please pray that this turns out to be only scar tissue or something totally benign. Also, he will have more chemo this weekend, so we would ask for God's protection on his body as these chemicals go in and destroy the bad cells and hopefully spare the good ones. For a sense of their potency, one of the drugs he is getting is a derivative of mustard gas.
Julian continues to be a trooper and a love bug and makes us all laugh and smile. He loves his daily rituals. Every morning, after changing Bun Bun (his stuffed bunny) into his daytime clothes, he brings a treat to our dogs, Smokey and Bandit. And every afternoon (after first setting the table for dinner -- in that order), he gets on his trike and burns rubber in the driveway daring anyone to cross his path. As the kids do their laps (Nolan on his razor), Rich is the race ''pronouncer,'' as Julian likes to call him. After a while, Smokey, the neighborhood cat (there are 3 pets on this street named Smokey), wanders into our yard and Julian especially loves going after him with his squirt gun. Last night, two girls from the 'hood joined him and Nolan in chasing Smokey, back and forth, through the holes in the fence. Tonight, we saw a repeat of the same but three more kids joined in and the gathering evolved into a road rally on the driveway complete with nerf guns, chalk, razor scooters and bikes. It was exactly like many nights here a year ago. The radio gets turned on an oldies station ('70s music gets everyone happy). Julian didn't want it all to end and the other kids didn't either and we kept the action going until it was almost dark.

Message from Andrea - October 7, 2009

So much to write and so hard to condense it all. Most recent news first: Julian had an MRI today of his head and spine. Even after 3 surgeries and 27 sessions of radiation (where each time he was put under with propofyll -- aka Michael Jackson's famous ''milk''), it's still unnerving to have your child go under general anesthesia. We met with Dr. Loudon, his neurosurgeon, afterward who said, in his pensive way, that overall it looked good (Praise God) but there continues to be an ''enhancement' at the site where his tumor had originally been. He said they will watch it and discuss Julian's case at Tumor Board this week. It's probably the scar tissue, he said. We are so grateful that they did not see anything new. Truly, truly. It certainly could have been different news. Yet, the more we are learning about medulloblastoma, the harder this gets. It's a beast of a disease and very aggressive. That's why he needs MRIs every 3 months this year, and every 4 months next year, 6 months the year after that, etc. Recurrences at the site of the tumor are ''common'' and usually occur within the first 2 years, one article said. Significant impact on the endocrine system. Cognitive impact. Toxicity to various organs. Stature impacted. High-risk for another malignancy. Long-term, life-long health issues. I can go on and on. Early in his diagnosis, I clung to the words, ''he has an 80 -85% chance.'' I naively thought that, even though he would go through a year of treatment, we had dodged the bullet! I was so relieved that he had medulloblastoma and not one of the other brain cancers. But medulloblastoma itself is a terrible, terrible cancer and it is robbing him of so much now and in the future. I guess after learning that a boy named Noah (cp: NoahDowell), who was only one year older than Julian, died of brain cancer last weekend at CHOC and then reading more about what medullo is going to do to Julian over time, it just makes the nightmare worse. Forgive me for unloading. I usually try and keep things positive, but I just need to share my thoughts tonight. Maybe the fact that he is 2/3 of the way through is contributing to these feelings. Right now, we have a plan to hang on to, a protocol, and we are following it and, thank God it seems to be working. But when the chemo is done and we complete the plan, then what? How do we keep the beast away? There is no plan after that. Just to trust God even more. And pray. And live life. One day at a time. Just like the doctor told us the day after Julian's first surgery. ''Don't fret about if he'll marry someday, or go to college. Just take it one day at a time.'' It's simple advice and actually something you have to consciously practice, taking life one day at a time, but it really does help. And, as another friend said, one day at a time is all any of us really have, isn't it? Good night and blessings.