Posted Dec 24, 2009 5:48pm
Dear Friends,
It's the night before Christmas (afternoon, actually) and there are creatures stirring all through the house (an 8-year-old and a 6 year-old). There is anticipation for tomorrow morning and, 'though the boys believe in Santa, they understand that Santa gives gifts to celebrate the greatest gift of all, one that God gave the world and that the best gift we can ever give back to Him is our heart, fully.
This has been a special season. Julian is home, and for that we are immensely grateful. We have been able to experience some very special holiday moments, ones we will never forget, and we have been blessed by the kindness of others.
Julian is weathering last weekend's chemo well, a bit nauseated at times, but much better than the previous chemo cycle. Since about three weeks ago, he has been nibbling on solid food, not enough to replace his formula and NG tube, but certainly a great start. He no longer needs his IV nutrition which is very nice not to have to prepare each night! Overall, I think he is feeling good; tired due to the chemo, but generally good. Has multiple follow-up appointments in the next weeks and a chemo push on Monday.
Asking for prayers for the next and final round of chemo set for Jan. 15. This will be with cisplatin which is quite harsh on his system and is responsible for his continuing hearing loss. We have the option of having cisplatin given at 50% to help spare some of the damage to his hearing, but it is a difficult decision because we don't want to do anything that could create an opportunity for a future relapse. So, we need lots of wisdom. But glad it's the last cycle!!!!
Christmas is about love, the greatest gift of all. May the world embrace Christ's message of love. Merry Christmas to all!
Monday, December 28, 2009
Monday, December 7, 2009
12 Months Ago Today
Posted 2 days ago
This week has been significant for us because exactly 12 months ago today was when Julian had his MRI and we learned of his brain tumor. We had planned to go to the mountains for the weekend, but Rich insisted we get an MRI or he was going to take Julian to the ER. And thankfully he was so insistent.
By now in the evening, Julian was already in his bed in the CHOC PICU, bewildered and wondering why we couldn't go home. While the nurses made him comfortable, a world of questions and fears was swirling in our heads and the strange sensation that this couldn't really be happening. The next morning he had his surgery and began the rest of his new life.
But God has been faithful and has brought us through this year in so many ways. The year sort of culminated into last Wednesday when we took the boys to a local Christmas event that we have attended for the past three years. We had been hoping Julian would be well enough to go again this year and when the day came he was better than expected: animated and fun. He isn't at all self-conscious, and he happily wore a snowman-type Santa hat that had two dangling snowpuffs. The boys brought their wish lists to Santa, decorated cookies and made crafts, just like they have in the past. Although this year he attended the event bald and with a tube taped to his face, we saw our delightful little boy thoroughly enjoy himself and it was the best gift we could hope for.
We have since fully embraced the Christmas season; we've bought and decorated our Christmas tree, put lights up on the house, polished off a box of Duraflame logs, and made a gingerbread house. All we need now is some snow! So we went to CVS and bought some (yes, that's how we 'experience' winter in Southern California).
We're going to enjoy every day knowing Julian will go for another round of chemo on Dec. 18. He'll be spending two nights at the hospital and we so hope he'll be feeling OK on Christmas Day. He won't be receiving the Cisplatin drug this time (the one that is damaging his hearing), but instead it will be given to him in January and the drugs originally planned for January will be given to him this month. We hope that this will slow or stop the damage to his hearing and maybe even provide some recovery, although he is still going to need hearing aids. The most recent audiogram confirmed continued hearing loss.
On a more positive note, Julian's stomach is doing much better as of last weekend; he has hardly thrown up and is able to take in more of his NG feeds than ever. We'll probably be able to give up his TPN (IV) nutrition soon.
Well, just wanted to share some musings from our world and hoping that your Christmas season is off to a blessed start, as well.
This week has been significant for us because exactly 12 months ago today was when Julian had his MRI and we learned of his brain tumor. We had planned to go to the mountains for the weekend, but Rich insisted we get an MRI or he was going to take Julian to the ER. And thankfully he was so insistent.
By now in the evening, Julian was already in his bed in the CHOC PICU, bewildered and wondering why we couldn't go home. While the nurses made him comfortable, a world of questions and fears was swirling in our heads and the strange sensation that this couldn't really be happening. The next morning he had his surgery and began the rest of his new life.
But God has been faithful and has brought us through this year in so many ways. The year sort of culminated into last Wednesday when we took the boys to a local Christmas event that we have attended for the past three years. We had been hoping Julian would be well enough to go again this year and when the day came he was better than expected: animated and fun. He isn't at all self-conscious, and he happily wore a snowman-type Santa hat that had two dangling snowpuffs. The boys brought their wish lists to Santa, decorated cookies and made crafts, just like they have in the past. Although this year he attended the event bald and with a tube taped to his face, we saw our delightful little boy thoroughly enjoy himself and it was the best gift we could hope for.
We have since fully embraced the Christmas season; we've bought and decorated our Christmas tree, put lights up on the house, polished off a box of Duraflame logs, and made a gingerbread house. All we need now is some snow! So we went to CVS and bought some (yes, that's how we 'experience' winter in Southern California).
We're going to enjoy every day knowing Julian will go for another round of chemo on Dec. 18. He'll be spending two nights at the hospital and we so hope he'll be feeling OK on Christmas Day. He won't be receiving the Cisplatin drug this time (the one that is damaging his hearing), but instead it will be given to him in January and the drugs originally planned for January will be given to him this month. We hope that this will slow or stop the damage to his hearing and maybe even provide some recovery, although he is still going to need hearing aids. The most recent audiogram confirmed continued hearing loss.
On a more positive note, Julian's stomach is doing much better as of last weekend; he has hardly thrown up and is able to take in more of his NG feeds than ever. We'll probably be able to give up his TPN (IV) nutrition soon.
Well, just wanted to share some musings from our world and hoping that your Christmas season is off to a blessed start, as well.
Monday, November 30, 2009
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
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
Monday, November 16, 2009
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.
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.
Monday, November 9, 2009
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
Monday, November 2, 2009
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)
Tuesday, October 20, 2009
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.
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.
Friday, October 9, 2009
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.
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.
Wednesday, October 7, 2009
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.
Wednesday, September 16, 2009
Message from Andrea - September 15, 2009
“What do clouds taste like?” Julian asked on the way to CHOC this morning. The freeway drive was actually kind of pretty today because of the white cloud puffs above us. The sky was bright blue so the clouds looked especially bright against it. “Do they taste like marshmallows?” They sure do, I said. I wanted to remember his observations today just like I want to remember our summer and all the late afternoons we spent at the beach. That last week of summer, we went to our favorite spot seven afternoons in a row including the night of Julian’s birthday (Lynn: that night we threw a sand dollar back in the ocean for you) and the evening of Nolan’s first day of school. Nolan didn’t have homework yet, so we decided to push the envelope one more time.
Julian said his birthday was his very best day ever. His oma and opa and grandma and grandpa were there as well as three school friends. It was a sweet morning and he really enjoyed himself. Thanks to all who sent him birthday wishes and to the three cutie pies who were able to come to his party! Sept. 3 was also a special day because his stomach felt OK that day. He had only been home from chemo for five days and the nausea was hitting him hard again, but that day, he had a ‘bummer-free’ morning and he felt good all day.
Now with Nolan in school and Julian missing him a lot, timing is such that his days are becoming filled with appointments: occupational therapy, physical therapy (good news: our insurance gave the OK for him to have OT and PT at home because he is immuno-suppressed), another audiogram to check his hearing (the last one showed significant loss since the June test), an MRI on Oct. 6 and his 6th round of chemo coming up Oct. 9. After that, he will have three more cycles of chemo bringing him to February 2010 when his treatment ends. We’ll know a lot more then about long-term effects and next steps, but we’ll have a big party and you are all invited!
Some special moments: Yesterday, Julian wanted to ride his tricycle on the driveway. He hadn’t been on that trike since last November and Rich and I were quietly celebrating this victory. While his peers are now learning to ride 2-wheelers without training wheels, Julian’s riding his tricycle again was a very big deal for him. And, true to his wonderful personality, he just enjoyed himself thoroughly.
We were also blessed by our little friend up the street, Lauren, who recently held her third lemonade stand for Julian on Balboa Island. (She and Julian may have been in the same kindergarten class had it not been for all of this.) We realized that this little girl is responsible for raising about $1,000 in total. Lauren, you are amazing (and so are your parents)!
Well, that’s our latest update. School starts Friday; his new home teacher will begin her afternoon visits then. We are looking forward to that. Also praying that his new case of sniffles won’t escalate. Thank you so much for your prayers. Blessings from us to you!
(Also, please pray for a boy named Noah Dowell and his family. He has brain cancer needs a miracle tonight. Thank you.)
Julian said his birthday was his very best day ever. His oma and opa and grandma and grandpa were there as well as three school friends. It was a sweet morning and he really enjoyed himself. Thanks to all who sent him birthday wishes and to the three cutie pies who were able to come to his party! Sept. 3 was also a special day because his stomach felt OK that day. He had only been home from chemo for five days and the nausea was hitting him hard again, but that day, he had a ‘bummer-free’ morning and he felt good all day.
Now with Nolan in school and Julian missing him a lot, timing is such that his days are becoming filled with appointments: occupational therapy, physical therapy (good news: our insurance gave the OK for him to have OT and PT at home because he is immuno-suppressed), another audiogram to check his hearing (the last one showed significant loss since the June test), an MRI on Oct. 6 and his 6th round of chemo coming up Oct. 9. After that, he will have three more cycles of chemo bringing him to February 2010 when his treatment ends. We’ll know a lot more then about long-term effects and next steps, but we’ll have a big party and you are all invited!
Some special moments: Yesterday, Julian wanted to ride his tricycle on the driveway. He hadn’t been on that trike since last November and Rich and I were quietly celebrating this victory. While his peers are now learning to ride 2-wheelers without training wheels, Julian’s riding his tricycle again was a very big deal for him. And, true to his wonderful personality, he just enjoyed himself thoroughly.
We were also blessed by our little friend up the street, Lauren, who recently held her third lemonade stand for Julian on Balboa Island. (She and Julian may have been in the same kindergarten class had it not been for all of this.) We realized that this little girl is responsible for raising about $1,000 in total. Lauren, you are amazing (and so are your parents)!
Well, that’s our latest update. School starts Friday; his new home teacher will begin her afternoon visits then. We are looking forward to that. Also praying that his new case of sniffles won’t escalate. Thank you so much for your prayers. Blessings from us to you!
(Also, please pray for a boy named Noah Dowell and his family. He has brain cancer needs a miracle tonight. Thank you.)
Wednesday, September 2, 2009
Dancing and giggling - August 27th
Posted Aug 27, 2009 2:17am
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
Dancing and giggling - August 27th
Posted Aug 27, 2009 2:17am
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
Wednesday, August 5, 2009
Message from Andrea - August 4, 2009
Summer days
Posted 1 day ago
Summer days are (now) wonderful! Nolan and Rich have been going to Corona del Mar beach in the late afternoons lately where they have been boogie boarding and body surfing. Well, out of the blue one afternoon last week Julian said he, too, wanted to go! Prior to this, he was pretty determined to remain put at home. So, we packed our bags and off we went. It was the most wonderful hour-and-a-half I can remember in a long while. Julian was content to play with his sand toys while Nolan and Rich rode the waves. (After a week of huge waves, the day we were there it was safe and the water was turquoise clear.) This little afternoon outing sure cured a severe case of cabin fever! Today, Julian wanted to go again. Yippie! And, in a county of 3 million people, who found us at the beach? His grandma & grandpa and cousins, who had the same inkling to escape the heat as we did and knew just where to look for us! I am just now learning how to post photos on this website, so I hope these show up:
Some other special things:Julian has been getting special handmade cards every few days in the mail from some very nice people at Send Love Today (www.sendlovetoday.org). They send encouraging cards to people being treated for brain tumors. If I had the talent and time, it would be so neat to volunteer for this group!
Today, he received in the mail a CD with a song that was written just for him. It's really good! I can't copy it because I think its protected, but there is a link if you would like to hear it: www.songsoflove.org then click on Family & Friends Song & Ringtone Dowload link (toward the bottom of the page). Type in Dunn for the child's last name and the number 19624 in the 'record number' field. The small donation helps them continue to write songs for other kids with serious illnesses.
All in all, Julian is doing about as well as he has since this began. Still not eating and still having some nausea, but he is gaining weight, happy and as sweet as ever. I think the fact that he wanted to go to the beach shows he is feeling so much better these days. He had his NG tube changed out last week (that is always a bummer). A clinic visit this Thursday (and maybe a blood transfusion), and then a few weeks until another round of chemo. Thank you all for your love and prayers!
Posted 1 day ago
Summer days are (now) wonderful! Nolan and Rich have been going to Corona del Mar beach in the late afternoons lately where they have been boogie boarding and body surfing. Well, out of the blue one afternoon last week Julian said he, too, wanted to go! Prior to this, he was pretty determined to remain put at home. So, we packed our bags and off we went. It was the most wonderful hour-and-a-half I can remember in a long while. Julian was content to play with his sand toys while Nolan and Rich rode the waves. (After a week of huge waves, the day we were there it was safe and the water was turquoise clear.) This little afternoon outing sure cured a severe case of cabin fever! Today, Julian wanted to go again. Yippie! And, in a county of 3 million people, who found us at the beach? His grandma & grandpa and cousins, who had the same inkling to escape the heat as we did and knew just where to look for us! I am just now learning how to post photos on this website, so I hope these show up:
Some other special things:Julian has been getting special handmade cards every few days in the mail from some very nice people at Send Love Today (www.sendlovetoday.org). They send encouraging cards to people being treated for brain tumors. If I had the talent and time, it would be so neat to volunteer for this group!
Today, he received in the mail a CD with a song that was written just for him. It's really good! I can't copy it because I think its protected, but there is a link if you would like to hear it: www.songsoflove.org then click on Family & Friends Song & Ringtone Dowload link (toward the bottom of the page). Type in Dunn for the child's last name and the number 19624 in the 'record number' field. The small donation helps them continue to write songs for other kids with serious illnesses.
All in all, Julian is doing about as well as he has since this began. Still not eating and still having some nausea, but he is gaining weight, happy and as sweet as ever. I think the fact that he wanted to go to the beach shows he is feeling so much better these days. He had his NG tube changed out last week (that is always a bummer). A clinic visit this Thursday (and maybe a blood transfusion), and then a few weeks until another round of chemo. Thank you all for your love and prayers!
Monday, July 20, 2009
Message from Andrea - July 20, 2009
How long does it take to pick up 771 pieces of Legos?
Posted 1 hour ago
Actually, not too long, but on a hardwood floor it is very tedious. Yes, we are home! Julian was able to leave the hospital earlier than anticipated and, although his nausea is worse than normal and he is pretty tired, he is well enough to enjoy his Legos including a new creation: a fire engine we built this weekend (the one with 771 pieces that went flying all over the place). He'll have an outpatient push of chemo this week and then a few weeks of rest. Thank you to everyone for your prayers and sweet wishes for Julian! They are making such a difference.
P.S. His eyebrows and eyelashes are now going, but he says he likes his "peachy" skin.
Posted 1 hour ago
Actually, not too long, but on a hardwood floor it is very tedious. Yes, we are home! Julian was able to leave the hospital earlier than anticipated and, although his nausea is worse than normal and he is pretty tired, he is well enough to enjoy his Legos including a new creation: a fire engine we built this weekend (the one with 771 pieces that went flying all over the place). He'll have an outpatient push of chemo this week and then a few weeks of rest. Thank you to everyone for your prayers and sweet wishes for Julian! They are making such a difference.
P.S. His eyebrows and eyelashes are now going, but he says he likes his "peachy" skin.
Wednesday, July 15, 2009
Message from Andrea - July 13, 2009
Getting ready for another round
Dear friends: our last 'break' was two weeks shorter than the others, so Julian will be going in for his next round of chemo already this Thursday, July 16. He doesn't really mind, though, he is such a little trooper. He is scheduled to be at CHOC from the 16-18, so if all goes well, he'll be home by the end of the weekend. Rich and I would really appreciate your prayers for him. The idea of these toxic chemicals going through him can be a bit scary and the effects don't always show up right away, too. But, we know God is good. When Julian came down with that infection last month he weathered it well even though the MD later said it could have been much more serious. And, his MRI showed that the site where the tumor had been has healed very, very well.
About a month ago, Julian's hair began to grow back and it came back in a shade of light brown. He had a full head of hair in early July, but then one day it all came off. So, now he is pretty much totally bald. He still has his long eyelashes and his eyebrows, though, and his big smile. He has been feeling pretty well lately and has been enjoying his 'big brudder,' Nolan. Those two have so much fun together. Hopefully, we'll be home soon so he can do more of the same!
Dear friends: our last 'break' was two weeks shorter than the others, so Julian will be going in for his next round of chemo already this Thursday, July 16. He doesn't really mind, though, he is such a little trooper. He is scheduled to be at CHOC from the 16-18, so if all goes well, he'll be home by the end of the weekend. Rich and I would really appreciate your prayers for him. The idea of these toxic chemicals going through him can be a bit scary and the effects don't always show up right away, too. But, we know God is good. When Julian came down with that infection last month he weathered it well even though the MD later said it could have been much more serious. And, his MRI showed that the site where the tumor had been has healed very, very well.
About a month ago, Julian's hair began to grow back and it came back in a shade of light brown. He had a full head of hair in early July, but then one day it all came off. So, now he is pretty much totally bald. He still has his long eyelashes and his eyebrows, though, and his big smile. He has been feeling pretty well lately and has been enjoying his 'big brudder,' Nolan. Those two have so much fun together. Hopefully, we'll be home soon so he can do more of the same!
Tuesday, June 23, 2009
Message from Andrea - June 23, 2009
It's good to be home
Posted 11 hours ago
We were able to go home Saturday and it feels "grand," as Julian likes to say. Just in time for Father's Day when we went on a bike ride around the neighborhood (Julian still fits in a bike trailer and enjoyed the nice breeze).
He's on IV antibiotics for another 4 days and then it will be down to only nine daily medicines (LOL). We hope to keep those nasty bugs away for a long time! He'll have another push of chemo this week and then 3 weeks until the next cycle.
His MRI came back clear and the P.A. remarked it's hard to tell there ever was a large tumor in his brain; he was pretty amazed by the difference between this MRI and one six months ago. They could see that his ventricles were too small, though, meaning a bit too much fluid was leaving his brain, so they had to recalibrate the setting on his shunt by simply using what amounts to a magnet placed on the outside of his head. After a few painless clicks, he was recalibrated.
Today, Julian wanted to go to Adventure City, a place he used to love. It's perfect for kids his age. For him, the outing was quite an undertaking and he lasted all of 35 minutes. We rode a kiddie train around the park, watched a 5-minute puppet show and then he said he was tired and wanted to go home. It was kind of sad to see how little he was able to do and how he shied away from even the gentle rides he used to enjoy in the past. I keep wondering if he'll ever be able to do the things kids his age do when this is all over or if it will ever be over.
Feeling a little melancholy, I admit, but during the last stay at CHOC I was updated on Cody, a boy with the same type of cancer as Julian. He had been in remission for about 2 years, was just about to go from 3-month to 6-month intervals for his MRIs -- which had been clear the entire time -- when small, rice-sized tumors appeared on his spine in a short amount of time. We shared a room with Cody in March when he first relapsed and he has been fighting for his life ever since. Survival rates for a relapse go down to 25%. I've learned of two more kids at CHOC (totalling 3 out of 7) who have relapsed with this disease. I need to find out if they (the MDs) can point to some reason this is happening. So....we accept all the victories -- and believe me, we are thankful for so much and just to be home is wonderful -- but are more aware of the realities, too. For the moment, I'm glad my little boy is sleeping soundly tonight. God bless.
Posted 11 hours ago
We were able to go home Saturday and it feels "grand," as Julian likes to say. Just in time for Father's Day when we went on a bike ride around the neighborhood (Julian still fits in a bike trailer and enjoyed the nice breeze).
He's on IV antibiotics for another 4 days and then it will be down to only nine daily medicines (LOL). We hope to keep those nasty bugs away for a long time! He'll have another push of chemo this week and then 3 weeks until the next cycle.
His MRI came back clear and the P.A. remarked it's hard to tell there ever was a large tumor in his brain; he was pretty amazed by the difference between this MRI and one six months ago. They could see that his ventricles were too small, though, meaning a bit too much fluid was leaving his brain, so they had to recalibrate the setting on his shunt by simply using what amounts to a magnet placed on the outside of his head. After a few painless clicks, he was recalibrated.
Today, Julian wanted to go to Adventure City, a place he used to love. It's perfect for kids his age. For him, the outing was quite an undertaking and he lasted all of 35 minutes. We rode a kiddie train around the park, watched a 5-minute puppet show and then he said he was tired and wanted to go home. It was kind of sad to see how little he was able to do and how he shied away from even the gentle rides he used to enjoy in the past. I keep wondering if he'll ever be able to do the things kids his age do when this is all over or if it will ever be over.
Feeling a little melancholy, I admit, but during the last stay at CHOC I was updated on Cody, a boy with the same type of cancer as Julian. He had been in remission for about 2 years, was just about to go from 3-month to 6-month intervals for his MRIs -- which had been clear the entire time -- when small, rice-sized tumors appeared on his spine in a short amount of time. We shared a room with Cody in March when he first relapsed and he has been fighting for his life ever since. Survival rates for a relapse go down to 25%. I've learned of two more kids at CHOC (totalling 3 out of 7) who have relapsed with this disease. I need to find out if they (the MDs) can point to some reason this is happening. So....we accept all the victories -- and believe me, we are thankful for so much and just to be home is wonderful -- but are more aware of the realities, too. For the moment, I'm glad my little boy is sleeping soundly tonight. God bless.
Wednesday, June 17, 2009
Message from The Dunns - June 17, 2009
The sun is breaking through the clouds
Yippee, the infection seems to be under control. It was in his Broviac after all, and blood drawn from each tube is now showing up negative for the infection, so the meds are working (and so are the prayers)!! Julian is feeling well and has had no fevers, so that is all good news. He did have his MRI yesterday (haven't heard the results yet) and will start his chemo tomorrow, with only a 1-day delay. The M.D. said that if he feels OK, we can probably go home Saturday and continue with his course of antibiotics at home. He had a hearing test today and is showing a slight deficit in one ear, so we'll have to watch that. Thank you, prayer warriors, we are so grateful!
In Him,
Andrea, Rich, Nolan and Julian
Yippee, the infection seems to be under control. It was in his Broviac after all, and blood drawn from each tube is now showing up negative for the infection, so the meds are working (and so are the prayers)!! Julian is feeling well and has had no fevers, so that is all good news. He did have his MRI yesterday (haven't heard the results yet) and will start his chemo tomorrow, with only a 1-day delay. The M.D. said that if he feels OK, we can probably go home Saturday and continue with his course of antibiotics at home. He had a hearing test today and is showing a slight deficit in one ear, so we'll have to watch that. Thank you, prayer warriors, we are so grateful!
In Him,
Andrea, Rich, Nolan and Julian
Monday, June 15, 2009
Message from Andrea - June 14, 2009
Clouds on the horizon
Posted 13 hours ago
Hello! Finally, a long overdue update on Julian.
While Julian’s had a nice break between chemotherapy cycles these past few weeks, last week ended with another trip to the Emergency Room. Thursday night he couldn’t keep anything down and had chills, woke up with a headache and just didn’t seem well, so we went to the clinic. He was started on antibiotics just to be safe, labs drawn and we were able to go home. But later that afternoon, a fever and a headache hit him quickly and we knew the routine that awaited us: rush to the E. R. and plan on being in the hospital at least 2-3 nights (standard routine for oncology patients with a central line to rule out an infection in his Broviac). His fever continued during the night, but by morning he began to feel much better. Unfortunately, the blood culture reveals he has a bacterial infection (pseudomona) and will need a 10-day course of an IV antibiotic. They know how to treat this bacteria but it isn’t harmless and can cause complications if it resists the treatment. It also means that his scheduled chemotherapy (round 3 was supposed to start this Wednesday) will be postponed for a bit. Today’s M.D. said not to worry, as long as it isn’t postponed say, for 4 weeks or so (medulloblastoma is so aggressive), there aren’t any concerns about impact on Julian’s long-term outcomes.
So… we would greatly appreciate your prayers that the infection will respond to the antibiotics and that there will be no additional complications or opportunity for cancer cells to grow. There are always potential complications for kids who have compromised immune systems. It seems like the sky is the limit in terms of things that could happen to them.
I will find out tomorrow if we’ll have to remain at CHOC for the next 10 days or if we can go home on home health care. He is still isolated due to being MRSA positive, so we don’t cherish the idea of him being stuck in this room for 10 days…
He was also scheduled for an MRI this coming Wednesday, but at this point I don’t know if that will still remain on the books for this week. Each day, we find out a little more.
Prior to this episode, we’ve had a fairly uneventful few weeks – a welcome state of being in our case. Although there was a brief hospital stay in May for a fever, he tolerated his second round of chemo in May really well and was a trooper going to follow-up clinic appointments and even getting a new nasal/gastric tube placed in his nose and having the old one pulled out. We went to Nolan’s last few Little League games, the team party, short trips to the library and a special outing to the La Habra Children’s Museum last week (they opened the doors early so Julian could have the place to himself for an hour). His preschool, Lil’ Lighthouse Preschool, included him in their graduation activities last Tuesday even though he hasn’t been to school since Dec. 4 and made him feel very special. So, we’ve had a wonderful and semi-normal few weeks lately.
But during times of calmness like what we had in May and early June, there is always the nagging question in the back of my mind, “is this the calm before the storm?” We still have 32 weeks of treatment ahead of us, so we dearly hope that any storms Julian encounters -- including the current one-- will be like the storms we have in Southern California: really mild and hardly worth mentioning on the 6 o’clock news. God bless.
Posted 13 hours ago
Hello! Finally, a long overdue update on Julian.
While Julian’s had a nice break between chemotherapy cycles these past few weeks, last week ended with another trip to the Emergency Room. Thursday night he couldn’t keep anything down and had chills, woke up with a headache and just didn’t seem well, so we went to the clinic. He was started on antibiotics just to be safe, labs drawn and we were able to go home. But later that afternoon, a fever and a headache hit him quickly and we knew the routine that awaited us: rush to the E. R. and plan on being in the hospital at least 2-3 nights (standard routine for oncology patients with a central line to rule out an infection in his Broviac). His fever continued during the night, but by morning he began to feel much better. Unfortunately, the blood culture reveals he has a bacterial infection (pseudomona) and will need a 10-day course of an IV antibiotic. They know how to treat this bacteria but it isn’t harmless and can cause complications if it resists the treatment. It also means that his scheduled chemotherapy (round 3 was supposed to start this Wednesday) will be postponed for a bit. Today’s M.D. said not to worry, as long as it isn’t postponed say, for 4 weeks or so (medulloblastoma is so aggressive), there aren’t any concerns about impact on Julian’s long-term outcomes.
So… we would greatly appreciate your prayers that the infection will respond to the antibiotics and that there will be no additional complications or opportunity for cancer cells to grow. There are always potential complications for kids who have compromised immune systems. It seems like the sky is the limit in terms of things that could happen to them.
I will find out tomorrow if we’ll have to remain at CHOC for the next 10 days or if we can go home on home health care. He is still isolated due to being MRSA positive, so we don’t cherish the idea of him being stuck in this room for 10 days…
He was also scheduled for an MRI this coming Wednesday, but at this point I don’t know if that will still remain on the books for this week. Each day, we find out a little more.
Prior to this episode, we’ve had a fairly uneventful few weeks – a welcome state of being in our case. Although there was a brief hospital stay in May for a fever, he tolerated his second round of chemo in May really well and was a trooper going to follow-up clinic appointments and even getting a new nasal/gastric tube placed in his nose and having the old one pulled out. We went to Nolan’s last few Little League games, the team party, short trips to the library and a special outing to the La Habra Children’s Museum last week (they opened the doors early so Julian could have the place to himself for an hour). His preschool, Lil’ Lighthouse Preschool, included him in their graduation activities last Tuesday even though he hasn’t been to school since Dec. 4 and made him feel very special. So, we’ve had a wonderful and semi-normal few weeks lately.
But during times of calmness like what we had in May and early June, there is always the nagging question in the back of my mind, “is this the calm before the storm?” We still have 32 weeks of treatment ahead of us, so we dearly hope that any storms Julian encounters -- including the current one-- will be like the storms we have in Southern California: really mild and hardly worth mentioning on the 6 o’clock news. God bless.
Tuesday, April 28, 2009
Message from Andrea - April 28, 2009
Musings
Posted 2 hours ago
Today is a nice, quiet day with Julian napping a bit this morning. He is doing OK lately. Tired of having tubes dangling from his chest and asking when those will be gone.... gaining some weight, working on his "homework" at times (worksheets and art projects provided by Lil' Lighthouse Preschool; we miss him going to school there!), and resting. Last Saturday, he went to Nolan's Little League game for the first time this season and it's more than half over. It was great to be there again -- even for 1/3 of the game. But mainly, he is resting up for his next round of chemo, May 6-8.
Since our last update, Julian did have a brief stay in the hospital (Easter Sunday plus 2 days) because of a fever at home that left as quickly as it came. Not sure if our thermometer was on the blink, but it was a good thing (actually, a God thing), in retrospect, that he spent a few days at CHOC right at that point because it so happened his white blood cell count was basically at zero. Had he caught anything then, he would have had no resistance and probably would have gotten a blood infection. So, we praise God again for orchestrating and maneuvering in ways that we do not fathom. And we thank you for your continued prayers.
We also found out that Julian tested positive again for the MRSA strain meaning that he'll be isolated again while in the hospital. So, if you come to visit, you'll have to gown up. Actually, with the swine flu going around, I'm kind of happy he'll be protected. (FYI: about 20% of the population has MRSA. It only becomes a problem when an infection flares up in vulnerable persons, i.e. the elderly and chronically ill.)
Good news: Julian's little friend who we met during radiation, Emily Galvan, had a clean MRI and is officially in remission! She has the same diagnosis as Julian. This is the news that family had been waiting for for a very long time and I'm sure they are absolutely loving life right now.
Please continue to pray for Julian, Emily, and new friends Adrian, Cody and another Julian.
Thank you to Julian's cousin, Lindsey, who is a blood donor match for him. He received her blood during his March hospital stay. You rock Lindsey (and so does your mom who is donating blood for other CHOC kids)! Anyone interested in becoming a blood donor for Julian or other CHOC patients should call (714) 532-8339 .
Blessings,Andrea
Posted 2 hours ago
Today is a nice, quiet day with Julian napping a bit this morning. He is doing OK lately. Tired of having tubes dangling from his chest and asking when those will be gone.... gaining some weight, working on his "homework" at times (worksheets and art projects provided by Lil' Lighthouse Preschool; we miss him going to school there!), and resting. Last Saturday, he went to Nolan's Little League game for the first time this season and it's more than half over. It was great to be there again -- even for 1/3 of the game. But mainly, he is resting up for his next round of chemo, May 6-8.
Since our last update, Julian did have a brief stay in the hospital (Easter Sunday plus 2 days) because of a fever at home that left as quickly as it came. Not sure if our thermometer was on the blink, but it was a good thing (actually, a God thing), in retrospect, that he spent a few days at CHOC right at that point because it so happened his white blood cell count was basically at zero. Had he caught anything then, he would have had no resistance and probably would have gotten a blood infection. So, we praise God again for orchestrating and maneuvering in ways that we do not fathom. And we thank you for your continued prayers.
We also found out that Julian tested positive again for the MRSA strain meaning that he'll be isolated again while in the hospital. So, if you come to visit, you'll have to gown up. Actually, with the swine flu going around, I'm kind of happy he'll be protected. (FYI: about 20% of the population has MRSA. It only becomes a problem when an infection flares up in vulnerable persons, i.e. the elderly and chronically ill.)
Good news: Julian's little friend who we met during radiation, Emily Galvan, had a clean MRI and is officially in remission! She has the same diagnosis as Julian. This is the news that family had been waiting for for a very long time and I'm sure they are absolutely loving life right now.
Please continue to pray for Julian, Emily, and new friends Adrian, Cody and another Julian.
Thank you to Julian's cousin, Lindsey, who is a blood donor match for him. He received her blood during his March hospital stay. You rock Lindsey (and so does your mom who is donating blood for other CHOC kids)! Anyone interested in becoming a blood donor for Julian or other CHOC patients should call (714) 532-8339 .
Blessings,Andrea
Thursday, April 9, 2009
HOME AGAIN - MESSAGE FROM ANDREA
Posted Apr 5, 2009 6:24pm
Just a quick update: Julian was finally discharged from CHOC on Friday, April 3rd! Our 3-day stay turned into 10. It's a good thing we were able to go home because I honestly don't think I could have kept him there one more day. He was so ready to go home and was very worried that someone might move his Legos. Fortunately, most of his Lego creations were still in the same place where he left them. We are trying to get the hang of a new feeding program and 'round the clock meds. Julian is pretty tired much of the time, but he has moments when he perks up and does a little jig or surprises us by saying something funny. He'll have 1X weekly outpatient chemo treatments until his next overnighter, May 6. Hopefully, that one will be much shorter than this one! We are praying for our new friends we met at CHOC: Adrian and (another) Julian, as well as Emily.
Just a quick update: Julian was finally discharged from CHOC on Friday, April 3rd! Our 3-day stay turned into 10. It's a good thing we were able to go home because I honestly don't think I could have kept him there one more day. He was so ready to go home and was very worried that someone might move his Legos. Fortunately, most of his Lego creations were still in the same place where he left them. We are trying to get the hang of a new feeding program and 'round the clock meds. Julian is pretty tired much of the time, but he has moments when he perks up and does a little jig or surprises us by saying something funny. He'll have 1X weekly outpatient chemo treatments until his next overnighter, May 6. Hopefully, that one will be much shorter than this one! We are praying for our new friends we met at CHOC: Adrian and (another) Julian, as well as Emily.
Monday, March 30, 2009
Message from Andrea and Julian - March 30, 2009
First, let me say thank you to everyone for your amazing support of Jammin' for Julian! It was a wonderful day of beautiful music made by the most darling children and teens. I am still so inspired by it and by the love that was demonstrated by everyone. We will never forget it.
Julian has handled this week's chemotherapy well. He did get sick, but they have a great drug, Zofran, which minimized the nausea. He has been mostly tired and a bit depressed because he really wants to go home. Originally, we thought this would be a 3-day visit, but we are now in day 6. He doesn't want to get out of bed or visit the playroom, either. The main thing is that they want to address his eating problems. He will have an endoscopy done today to look inside his stomache and small intestine, and then an NG tube placed into his nose so food can go into his stomach. He won't like that very much, but it has to be done. Right now, he has no desire or interest in eating and has had no solid foods for months. So, we're hoping his system will get used to food again.
Well, that's the latest from room 392!
Love,Andrea and Julian
Julian has handled this week's chemotherapy well. He did get sick, but they have a great drug, Zofran, which minimized the nausea. He has been mostly tired and a bit depressed because he really wants to go home. Originally, we thought this would be a 3-day visit, but we are now in day 6. He doesn't want to get out of bed or visit the playroom, either. The main thing is that they want to address his eating problems. He will have an endoscopy done today to look inside his stomache and small intestine, and then an NG tube placed into his nose so food can go into his stomach. He won't like that very much, but it has to be done. Right now, he has no desire or interest in eating and has had no solid foods for months. So, we're hoping his system will get used to food again.
Well, that's the latest from room 392!
Love,Andrea and Julian
Friday, March 20, 2009
Message from Andrea - March 20, 2009
God is so merciful. Yesterday we received wonderful news from our doctor that Julian's MRI this week came back clear! This means there was no evidence of any new cancer growth in his brain or spine. Dr. Shen wants to do a lumbar puncture next week just to be certain. We are very thankful for this encouraging news.
We are finishing up our 'break' from treatment and next week Julian starts round 2 of chemo. He'll be in the hospital for three days and will get an NG tube during that time (a feeding tube that goes through his nose into his stomache) so he can start 'eating' again. Until now, he is on IV nutrition and still as thin as a rail. We are praying that his appetite will return, but at least his stomache and intestines will be able to work again and hopefully he'll gain some weight(although I'm sure Julian will not be a happy camper about having a tube in his nose). The chemo can impact his kidneys and hearing, and will make him feel pretty sick, so we would appreciate your prayers about all of these things.
Tomorrow is the "Jammin' for Julian" children's concert and we are so excited! We hope to see you there and for those who can't attend, you can hear it via the internet on www.kociradio.com. The concert begins at 2:30 p.m.
Thank you for your continued prayers and support! Also, please keep a little girl named Emily in your prayers.
We are finishing up our 'break' from treatment and next week Julian starts round 2 of chemo. He'll be in the hospital for three days and will get an NG tube during that time (a feeding tube that goes through his nose into his stomache) so he can start 'eating' again. Until now, he is on IV nutrition and still as thin as a rail. We are praying that his appetite will return, but at least his stomache and intestines will be able to work again and hopefully he'll gain some weight(although I'm sure Julian will not be a happy camper about having a tube in his nose). The chemo can impact his kidneys and hearing, and will make him feel pretty sick, so we would appreciate your prayers about all of these things.
Tomorrow is the "Jammin' for Julian" children's concert and we are so excited! We hope to see you there and for those who can't attend, you can hear it via the internet on www.kociradio.com. The concert begins at 2:30 p.m.
Thank you for your continued prayers and support! Also, please keep a little girl named Emily in your prayers.
Tuesday, March 10, 2009
REMINDER - JAMMIN' FOR JULIAN - MARCH 21ST
An Open Children’s Pop Concert & Expo
When: Saturday, March 21, 2009
NEW TIME: 2:30 P.M. (Doors open at 2 p.m.)
Where: Newport Mesa Church
sanctuary, 2599 Newport Blvd., Costa Mesa
What: An open children’s pop concert and expo (suggested performers from preschool to 6th grade). KOCI FM 101.5 will broadcast the event live on radio and the Internet. All proceeds will benefit the Julian Dunn Cancer Fund for 5-year-old Julian who is being treated for a brain tumor.
Event contact: Richard Dunn, (949) 433-0639 or dunnwriter@yahoo.com.
Suggested donation: $15 per person, or a maximum of $60 per family. No charge for performers.
NOTE: REGISTRATION FOR PERFORMERS IS CLOSED
http://www.jamminforjulian.org/
When: Saturday, March 21, 2009
NEW TIME: 2:30 P.M. (Doors open at 2 p.m.)
Where: Newport Mesa Church
sanctuary, 2599 Newport Blvd., Costa Mesa
What: An open children’s pop concert and expo (suggested performers from preschool to 6th grade). KOCI FM 101.5 will broadcast the event live on radio and the Internet. All proceeds will benefit the Julian Dunn Cancer Fund for 5-year-old Julian who is being treated for a brain tumor.
Event contact: Richard Dunn, (949) 433-0639 or dunnwriter@yahoo.com.
Suggested donation: $15 per person, or a maximum of $60 per family. No charge for performers.
NOTE: REGISTRATION FOR PERFORMERS IS CLOSED
http://www.jamminforjulian.org/
Thursday, February 19, 2009
Message from Andrea - February 18, 2009
Feb. 18 -- Finished with radiation
Julian finished his 6-week course of radiation today and we get a 4-week break from 'everything.' He still needs to go to CHOC once per week for check-ups, etc., but the daily visits to the radiation dept. are finished. It feels good to have this portion of his treatment finished. Only 49 weeks to go!
He also finished his first series of chemotherapy today. The next cycle will start in a month. We now hope and pray that his appetite will begin returning. He is on 24-hour IV nutrition and only drinks water and milk. The effects of radiation will stay with him another two weeks or so, but we hope to see some positive changes in his appetite after that. We would appreciate your prayers for that!
Julian is in good spirits. He has enjoyed bringing a new 'friend' to CHOC every day (from among his collection of furry friends) and making sure that everyone met his friend of the day (everyone from the parking lot attendant to the anesthesiologist). Today, being his last day of radiation, his room in the Short Stay Unit was totally decorated with hearts and he was able to take home the toys that, each morning for a month, had been sitting on his bed for him to play with. (Photos to be posted soon!)
Julian finished his 6-week course of radiation today and we get a 4-week break from 'everything.' He still needs to go to CHOC once per week for check-ups, etc., but the daily visits to the radiation dept. are finished. It feels good to have this portion of his treatment finished. Only 49 weeks to go!
He also finished his first series of chemotherapy today. The next cycle will start in a month. We now hope and pray that his appetite will begin returning. He is on 24-hour IV nutrition and only drinks water and milk. The effects of radiation will stay with him another two weeks or so, but we hope to see some positive changes in his appetite after that. We would appreciate your prayers for that!
Julian is in good spirits. He has enjoyed bringing a new 'friend' to CHOC every day (from among his collection of furry friends) and making sure that everyone met his friend of the day (everyone from the parking lot attendant to the anesthesiologist). Today, being his last day of radiation, his room in the Short Stay Unit was totally decorated with hearts and he was able to take home the toys that, each morning for a month, had been sitting on his bed for him to play with. (Photos to be posted soon!)
Wednesday, February 11, 2009
Message from Andrea - February 10, 2009
We are now in the final stretch of radiation treatments, with Julian's last day being Feb. 18. After that, we have four weeks "off" and then begin a new round of chemotherapy. Julian is feeling much better now than initially. He is not as nauseated and not quite as tired, although he does rest most of the day. He is more interested in playing with toys now and started coloring pictures again a little bit recently. Unfortunately, he still does not want to eat any food and is on round-the-clock IV nutrition. I am hopeful that, once the radiation stops, his appetite will begin to return. He has also lost much of his hair, except for light blond fuzz (and his eyelashes and eyebrows). He is a sweetheart and keeps smiling and blowing kisses despite it all.
You may have already heard of "Jammin' for Julian," a March 21 children's concert where area children (Preschool age through 6th grade) will be performing. This is Rich's brainchild and we have been getting lots of encouragement about it from friends throughout the community. Here is a link to more information:
http://www.dailypilot.com/articles/2009/01/22/topstory/dpt-jamminforjulian012209.txt
We also have this website: www.jamminforjulian.org
Besides Jammin' for Julian, I'm glad to report there hasn't been any major news lately (except for the continued goodness of people and their prayers!)
Love,Andrea
You may have already heard of "Jammin' for Julian," a March 21 children's concert where area children (Preschool age through 6th grade) will be performing. This is Rich's brainchild and we have been getting lots of encouragement about it from friends throughout the community. Here is a link to more information:
http://www.dailypilot.com/articles/2009/01/22/topstory/dpt-jamminforjulian012209.txt
We also have this website: www.jamminforjulian.org
Besides Jammin' for Julian, I'm glad to report there hasn't been any major news lately (except for the continued goodness of people and their prayers!)
Love,Andrea
Saturday, January 17, 2009
Message from Rich and Andrea - January 17th
Furry and non-furry friends
Posted 19 hours ago
Julian completed his first week as an outpatient and gets an A+ for effort (as do all the wonderful RNs, MDs and hospital staff who have worked with him this week and since Day 1). While he wasn't too happy going back and forth to the hospital each day, I think that today he began to understand that there is no pain involved with radiation and that the routine (Broviac) tube-flushing activities of the day won't hurt him either. He has been so petrified of being touched that even minor things like taking his temperature or removing his ID band could become difficult. When we arrive at CHOC Short Stay each morning, a child life therapist is there to greet us and to help make Julian comfortable. He was also greeted this week by Samson, a Leonberger (sp) breed of dog that is about the size of a small pony and has a mane like a lion. Although Julian wasn't sure what to make of such a large dog, his constant companion "Puppers" received a wet sniff and if one can interpret the response of a stuffed animal, I would say Puppers liked it. Next week, the child life therapist will bring a doll that is equipped with a Broviac so Julian can touch it and better understand what it is for. There truly are many wonderful people we encounter each day at CHOC -- hospital staff and family alike. The radiation staff seem to have a sense of reverence during those minutes when the red triangle is flashing on the computer indicating that Julian's head and spine are being zapped with more x-rays than any one person should ever have. The St. Joseph recovery nurses have a motherly concern over his welfare (and one lovely nurse brings me coffee each time we are under her care). The PT, OT and Speech Therapy staff know exactly how much to push Julian to work his muscles to regain his strength. I could go on. I ran into a parent again today who is also a CHOC M.D. Her 5-year-old son had a brain anyeurism 5 months ago and he has not yet been home. She works in the unit where he is a patient. It is a different world here.
Posted 19 hours ago
Julian completed his first week as an outpatient and gets an A+ for effort (as do all the wonderful RNs, MDs and hospital staff who have worked with him this week and since Day 1). While he wasn't too happy going back and forth to the hospital each day, I think that today he began to understand that there is no pain involved with radiation and that the routine (Broviac) tube-flushing activities of the day won't hurt him either. He has been so petrified of being touched that even minor things like taking his temperature or removing his ID band could become difficult. When we arrive at CHOC Short Stay each morning, a child life therapist is there to greet us and to help make Julian comfortable. He was also greeted this week by Samson, a Leonberger (sp) breed of dog that is about the size of a small pony and has a mane like a lion. Although Julian wasn't sure what to make of such a large dog, his constant companion "Puppers" received a wet sniff and if one can interpret the response of a stuffed animal, I would say Puppers liked it. Next week, the child life therapist will bring a doll that is equipped with a Broviac so Julian can touch it and better understand what it is for. There truly are many wonderful people we encounter each day at CHOC -- hospital staff and family alike. The radiation staff seem to have a sense of reverence during those minutes when the red triangle is flashing on the computer indicating that Julian's head and spine are being zapped with more x-rays than any one person should ever have. The St. Joseph recovery nurses have a motherly concern over his welfare (and one lovely nurse brings me coffee each time we are under her care). The PT, OT and Speech Therapy staff know exactly how much to push Julian to work his muscles to regain his strength. I could go on. I ran into a parent again today who is also a CHOC M.D. Her 5-year-old son had a brain anyeurism 5 months ago and he has not yet been home. She works in the unit where he is a patient. It is a different world here.
Wednesday, January 14, 2009
WE'RE HOME! A MESSAGE FROM RICH AND ANDREA - JANUARY 13, 2009
9:30 p.m. After 6 weeks at CHOC, we are finally home tonight! Hooray! Julian is sleeping right now and will, hopefully, have a peaceful night's rest. Tonight, he won't be woken up to have his blood pressure and temperature taken, his blood drawn, his urine measured, tubes flushed, IV pump alarms turned down, medicines given, ID number verified, and hallway chatter by nocturnal nurses, etc. etc. Don't get me wrong: CHOC is an amazing place and we thank God for that kind of medical care, but there's nothing like home! Even this first afternoon home made a difference for him. He ate a bit more than he did in the hospital (actually, he was not eating at all the past few days and he took two bites of dinner with Nolan and his daddy, so that was wonderful) and was able to do much more walking (around the house and outside to say hi to the doggies). His endurance levels simply shot up. The first thing he did when we got home was head for the (now dried up) Christmas tree and open his presents. Tomorrow and daily for the next 5 weeks, we head back to CHOC for radiation in the a.m. but we get to go home again afterward and that will be great. We know that there will be trying days and nights in our future, but for now... we're basking in tonight.
Friday, January 9, 2009
Friday, Janaury 9 - Update
Good Afternoon Everyone,
I wanted to post an update on Julian's release from the hospital. When I picked up Nolan this morning for school he told me that Julian unfortuantely developed a fever, and would not be released today as was hoped. We are praying he comes home very soon.
I have not spoken with Rich or Andrea but as soon as I hear anything from I will update the site.
Kim
I wanted to post an update on Julian's release from the hospital. When I picked up Nolan this morning for school he told me that Julian unfortuantely developed a fever, and would not be released today as was hoped. We are praying he comes home very soon.
I have not spoken with Rich or Andrea but as soon as I hear anything from I will update the site.
Kim
Thursday, January 8, 2009
Heading Home - January 9th
I wanted to pass along the GREAT news that Julian will be heading home tomorrow (Friday the 9th)! I visited briefly with Andrea and Julian and they are excited to be leaving the hospital to be home with the family.
I will post updates as I receive them from Andrea and Rich.
Our continued prayers to the entire Dunn Family!
Kim Burton
I will post updates as I receive them from Andrea and Rich.
Our continued prayers to the entire Dunn Family!
Kim Burton
Friday, January 2, 2009
HAPPY NEW YEAR - A MESSAGE FROM RICH AND ANDREA
Rich and I are happy to let you know that the (cerebral spinal fluid) test results came back today... negative! They found no cancer cells in the lumbar puncture from yesterday which means Julian will be treated with standard chemo/radiation therapy rather than the more aggressive, high-risk therapy. Praise God! We are so incredibly grateful for your prayers! Although our boy will still face more than a year of increasingly challenging treatment, we are so relieved that he will be spared the more damaging radiation therapy that we originally were told would likely be the case. This is the best New Year's wish we could ask for and we give God the glory!
Rejoicing,Andrea and Rich
P.S. Julian will stay in the hospital several more days. Radiation will start next week and chemo soon after.
Rejoicing,Andrea and Rich
P.S. Julian will stay in the hospital several more days. Radiation will start next week and chemo soon after.
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