Dear Friends,
If you haven't had a chance I urge you to go to the CarePage for the Dunn Family. www.carepages.com under the search box you may look for them under JuliansNotes .
With our long journey ahead we are ready to start Meal Schedule for the family. The link below should get you to the right spot. If it doesn't let me know...technology is definitely not my gift but we will figure it out. I think that the link has to come from my computer but if you send me a email with your class names in the heading I think I can hit reply all and still send the link. Everything you need to provide a meal is located on this site. Thank you in advance for your loving care.
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=524f854d-cdfa-4884-a97b-474a0c8077b6
Of course, there are many ways to provide comfort for the family depending on your circumstances. We will be providing lunches for Nolan Dunn in 4-R. You may email our contact at Choice Lunch at lmcgill@choicelunch.com to move a credit or use your credit card to provide a lunch. Even a $5.00 donation for lunch is a huge help. If technology is not your gift either then you can give your donation to myself or Hannah Lee (mom in 4-R). We will have an envelope with us at all times. If we find money in our children's backpack we will assume that is a donation for Nolan's lunch. So lots of ways to help there.
Most of all your continued prayers for a miracle will bless this family in a powerful way.
Believing in The One who is able,
Carrie Olson
"Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations for ever and ever! Amen"
Ephesians 3 : 20 & 21
Friday, November 12, 2010
Friday, October 29, 2010
Message from Andrea - October 29, 2010
Not very good news
Posted 12 hours ago
Julian had his third MRI today since his treatment ended last January and we were anticipating another good report, however, they did see something suspicious on his lower spine that wasn't there before. It's a small spot, about the size of a rice kernel. So the plan is for him to have surgery on Nov. 5 plus a lumbar puncture to see if any cancer cells are floating around in the spinal fluid. They will analyze the growth and we'll know what it is. We will have a meeting with Dr. Shen next week to discuss treatment options in more detail. If it turns out that the growth is a return of the cancer, we're looking at chemo and radiation again and the cure rate drops pretty significantly. If, God willing, "all" he needs is surgery, he'll be able to return to school in about one week. We haven't said anything to either of the boys yet. Probably won't until later next week. We want to keep their routines as normal as possible. Julian has been so happy lately, enjoying school and the routine that he is in. Did not think we would be crossing this bridge so soon.
Posted 12 hours ago
Julian had his third MRI today since his treatment ended last January and we were anticipating another good report, however, they did see something suspicious on his lower spine that wasn't there before. It's a small spot, about the size of a rice kernel. So the plan is for him to have surgery on Nov. 5 plus a lumbar puncture to see if any cancer cells are floating around in the spinal fluid. They will analyze the growth and we'll know what it is. We will have a meeting with Dr. Shen next week to discuss treatment options in more detail. If it turns out that the growth is a return of the cancer, we're looking at chemo and radiation again and the cure rate drops pretty significantly. If, God willing, "all" he needs is surgery, he'll be able to return to school in about one week. We haven't said anything to either of the boys yet. Probably won't until later next week. We want to keep their routines as normal as possible. Julian has been so happy lately, enjoying school and the routine that he is in. Did not think we would be crossing this bridge so soon.
Monday, October 11, 2010
Back to School - A message from Andrea
Back to school, September 8.
I cannot believe it's been over two months since our last update. Well, these two photos sort of say it all: Julian celebrated his 7th birthday (and had a great time at his party!) and a few days later he started first grade at the same school as Nolan, Mariners Christian School. I think we were pinching ourselves the first few days of school; was this really happening? We sort of held our breath expecting a phone call at any time to come and pick him up, that he was too tired or that there may have been some other difficulty. But no such calls. How blessed we are that our son is able to return to school with his peers. And he is able to have the same first grade teacher as Nolan had three years ago, a wonderful, seasoned teacher who is supportive of his special needs. We know there are all kinds of 'late effects' of the treatment that may (or peprhaps, will) develop, but we're taking things one day/week/month at a time, and are so enjoying Julian and his new and better life now!
His next MRI is Oct. 28. We hope and pray that this one, just like the others since his treatment finished, will show no changes. Thank you for joining us in this prayer. Prayer is powerful!!!!
I cannot believe it's been over two months since our last update. Well, these two photos sort of say it all: Julian celebrated his 7th birthday (and had a great time at his party!) and a few days later he started first grade at the same school as Nolan, Mariners Christian School. I think we were pinching ourselves the first few days of school; was this really happening? We sort of held our breath expecting a phone call at any time to come and pick him up, that he was too tired or that there may have been some other difficulty. But no such calls. How blessed we are that our son is able to return to school with his peers. And he is able to have the same first grade teacher as Nolan had three years ago, a wonderful, seasoned teacher who is supportive of his special needs. We know there are all kinds of 'late effects' of the treatment that may (or peprhaps, will) develop, but we're taking things one day/week/month at a time, and are so enjoying Julian and his new and better life now!
His next MRI is Oct. 28. We hope and pray that this one, just like the others since his treatment finished, will show no changes. Thank you for joining us in this prayer. Prayer is powerful!!!!
Thursday, July 15, 2010
MRI IS CLEAR! A message from Rich and Andrea - July 14, 2010
MRI is clear!
Posted 14 hours ago
Praise God! Julian's most recent MRI looked great! Thank you for your prayers. He did well through the procedure and we are grateful to have received word today that the results were great. Every day is a gift in my book!
Posted 14 hours ago
Praise God! Julian's most recent MRI looked great! Thank you for your prayers. He did well through the procedure and we are grateful to have received word today that the results were great. Every day is a gift in my book!
Dear Friends - A Message from Andrea July 7, 2010
Dear Friends,
I can’t tell you how wonderful it is to live a ‘normal’ life again. There are moments when my mind goes back to the months not long ago when Julian was in the throes of chemotherapy and I remember how it would be for him at night, sleeping attached to a feeding tube and an IV, full of meds and often waking up during the night nauseated, and I look at him now, sleeping peacefully all night long. It is hard to comprehend that his life and quality of life were so radically different then. I think he has forgotten much of it, which is a great blessing to us all, and is now focused on just being a kid and doing what kids do: play.
He recently had his first haircut since his hair grew back and he looks very handsome. His hair has come back a slightly more wiry texture, and a little darker, but he usually wears a cap to keep the sun off or it would probably be blonder. While he doesn’t have all his energy or appetite back, he is enjoying many routine things: playing for hours with Legos (of course!), being silly with his brother, chasing birds, coloring, etc.
We just returned from something that wasn’t routine: our Make-a-Wish trip to Disneyland! Julian hadn’t been there since he was 9 months old so it was all new to him. They put us up for 5 nights at the Paradise Pier Hotel and we were so well-treated! Our trip included a special visit with Julian’s favorite characters Buzz and Woody, and the boys got to go behind the scenes to decorate cakes with the Disney pastry chef and staff. In addition to three days at Disneyland Resort, we went to Knott’s and Medieval Times. Equally as fun as the amusement parks were the late afternoons when we would come back to the hotel and jump in the pool! This was Julian’s first time in a pool in two years! He especially enjoyed the “shakoozi” and Nolan loved the water slide. Thank you to all the special people at Make-a-Wish and Disneyland Resort for creating an experience for us that we’ll never forget! We are still on Cloud 9 from it.
While we try and move on, there are unavoidable reminders of the past, like his next brain/spine MRI which is this Friday. Once again, he will have to be fully sedated because it would be too difficult for him to lay perfectly still for 90 minutes in a loud, hot tube. When he gets older, he may be able to do so, but he is still too young at this point. We would ask your prayers for that whole sedation process to go smoothly and that there would be no changes from the last MRI.
We also request prayers that he be independent enough for first grade. He still has a few skills to re-learn but is a little reluctant to do so. We also pray that he can handle a full, 6.25-hour day at school. Rich and I go back and forth on whether we think he is up to the task. But, we've enrolled him in a 1-week summer school class and a weeklong Vacation Bible School program so we'll see how he does in either of those.
Well, that is our quick update. If there is such a thing as “normal,” we are humbled and thankful to be able to report that things are still that way!
Blessings,
Andrea Dunn
I can’t tell you how wonderful it is to live a ‘normal’ life again. There are moments when my mind goes back to the months not long ago when Julian was in the throes of chemotherapy and I remember how it would be for him at night, sleeping attached to a feeding tube and an IV, full of meds and often waking up during the night nauseated, and I look at him now, sleeping peacefully all night long. It is hard to comprehend that his life and quality of life were so radically different then. I think he has forgotten much of it, which is a great blessing to us all, and is now focused on just being a kid and doing what kids do: play.
He recently had his first haircut since his hair grew back and he looks very handsome. His hair has come back a slightly more wiry texture, and a little darker, but he usually wears a cap to keep the sun off or it would probably be blonder. While he doesn’t have all his energy or appetite back, he is enjoying many routine things: playing for hours with Legos (of course!), being silly with his brother, chasing birds, coloring, etc.
We just returned from something that wasn’t routine: our Make-a-Wish trip to Disneyland! Julian hadn’t been there since he was 9 months old so it was all new to him. They put us up for 5 nights at the Paradise Pier Hotel and we were so well-treated! Our trip included a special visit with Julian’s favorite characters Buzz and Woody, and the boys got to go behind the scenes to decorate cakes with the Disney pastry chef and staff. In addition to three days at Disneyland Resort, we went to Knott’s and Medieval Times. Equally as fun as the amusement parks were the late afternoons when we would come back to the hotel and jump in the pool! This was Julian’s first time in a pool in two years! He especially enjoyed the “shakoozi” and Nolan loved the water slide. Thank you to all the special people at Make-a-Wish and Disneyland Resort for creating an experience for us that we’ll never forget! We are still on Cloud 9 from it.
While we try and move on, there are unavoidable reminders of the past, like his next brain/spine MRI which is this Friday. Once again, he will have to be fully sedated because it would be too difficult for him to lay perfectly still for 90 minutes in a loud, hot tube. When he gets older, he may be able to do so, but he is still too young at this point. We would ask your prayers for that whole sedation process to go smoothly and that there would be no changes from the last MRI.
We also request prayers that he be independent enough for first grade. He still has a few skills to re-learn but is a little reluctant to do so. We also pray that he can handle a full, 6.25-hour day at school. Rich and I go back and forth on whether we think he is up to the task. But, we've enrolled him in a 1-week summer school class and a weeklong Vacation Bible School program so we'll see how he does in either of those.
Well, that is our quick update. If there is such a thing as “normal,” we are humbled and thankful to be able to report that things are still that way!
Blessings,
Andrea Dunn
Thursday, May 20, 2010
Jammin' for Julian - A Message from Rich and Andrea
Jammin'
Dear Friends,Jammin' for Julian II last Sunday was wonderful! The young performers were just terrific and they inspired us all! Thank you to all the incredible singers and musicians who are using their talents in such a generous way. We raised $4,000 which will be divided among five non-profits to further assist families in the community. I have to tell you, it was pretty therapeutic to be able to focus our eyes on the needs of others, rather than our own! Julian enjoyed the concert and especially standing on stage with me. Nolan had great fun with his cousins (thanks Jordan for your awesome singing!) and friends sitting together from Little League (go Orion!). Our sweet neighbor, Lauren, and her parents, set up a beautiful lemonade stand -- complete with hot soup because the weather was quite chilly -- and together with a wonderful bake sale raised about $800 toward the total. Thanks to special volunteers and family helpers! Emcee Tom Johnson was awesome again. Thanks for jammin' with us!!! (P.S. The entire concert was filmed by Win Hodge and is uploaded on Ben Blackstone's website www.benblackstone.net. By the way, Ben is doubly talented: a terrific ballplayer and an amazing pianist. Thanks Blackstones!)
Dear Friends,Jammin' for Julian II last Sunday was wonderful! The young performers were just terrific and they inspired us all! Thank you to all the incredible singers and musicians who are using their talents in such a generous way. We raised $4,000 which will be divided among five non-profits to further assist families in the community. I have to tell you, it was pretty therapeutic to be able to focus our eyes on the needs of others, rather than our own! Julian enjoyed the concert and especially standing on stage with me. Nolan had great fun with his cousins (thanks Jordan for your awesome singing!) and friends sitting together from Little League (go Orion!). Our sweet neighbor, Lauren, and her parents, set up a beautiful lemonade stand -- complete with hot soup because the weather was quite chilly -- and together with a wonderful bake sale raised about $800 toward the total. Thanks to special volunteers and family helpers! Emcee Tom Johnson was awesome again. Thanks for jammin' with us!!! (P.S. The entire concert was filmed by Win Hodge and is uploaded on Ben Blackstone's website www.benblackstone.net. By the way, Ben is doubly talented: a terrific ballplayer and an amazing pianist. Thanks Blackstones!)
Thursday, April 15, 2010
MRI IS CLEAR! A message from Rich and Andrea - April 15, 2010
MRI is clear!
Posted 16 hours ago
So thankful. Julian's MRI from yesterday is clear! Dr. Shen said it was very good news because it was his first one since the chemo stopped and usually if they were going to see something they would see it now. We are very happy!!!
“Great is His faithfulness. His mercies are new every morning.” Lamentations 3:23.
Posted 16 hours ago
So thankful. Julian's MRI from yesterday is clear! Dr. Shen said it was very good news because it was his first one since the chemo stopped and usually if they were going to see something they would see it now. We are very happy!!!
“Great is His faithfulness. His mercies are new every morning.” Lamentations 3:23.
Tuesday, April 13, 2010
A Time for New Beginnings - A message from Rich and Andrea - April 13, 2010
Posted 16 hours ago
Dear Friends,
Spring is definitely a time of new beginnings. The flowers are blooming; the sun is warming things up; a pair of duckies has been visiting our front yard recently looking for bread scraps; and Easter was beautiful. It has truly been a time of rejuvenation for us. It all started two Fridays ago when Julian had his NG tube removed. We had been anticipating this for weeks and it finally happened. For the first time in 15 months, he has not been connected at night to a pump of one sort or another. No more alarms, beeps, bags and tubes! He is eating OK, preferring sweets to veggies, but he knows he needs to keep eating or that tube goes back in. Now he is asking when his other set of tubes, his central line, will be removed. He has started sleeping in his bunk bed again and Nolan is so happy to have his brother back. In more ways than ever, he is like a regular kid again. Tomorrow is his next MRI and in a few weeks a final infusion of antibiotic. Then his central line will be removed and our clinic visits will be reduced to monthly.
His hair is growing back, too, and his energy levels are increasing. He recently went to an Angel game with Rich (his first since March of 2008), and on Easter Sunday we went to church and had dinner with both sides of the family. That made up for last Easter when he woke up with a fever that put him in the hospital for about 9 days. We sure enjoyed spring break, too. We had lunch at Ruby’s Café at the end of the pier and saw a sea lion and a pod of dolphins nearby (I overheard someone at another table calling them a 'pod' so now I'm using that word). It was a cloudy, rainy day, and most people stayed away from the beach, but the sun broke out and it was gorgeous. The boys also got a close-up visit at a fire station (thanks Minda!) where the firefighters treated them like VIPs. And, Julian’s biggest wish was fulfilled last weekend: he has been aching to hold a baby chickie. We’ve seen them behind glass in incubators but we finally found some chicks at the Youth Expo that he could pet and hold. He was so happy. The boys also got to pet bunnies there and learned all about different rabbit breeds (for ‘future pet planning’). [Note to any of his nurses who might be reading this: I promise he washed his hands right afterwards followed by antibacterial gel!]
There is much more I can write but one thing I must include is that "Jammin’ for Julian II" is in the works. People have been asking us if we were going to do another one, so we’ve set 4 p.m. May 16 as the date and the location is going to be St. Mark’s Presbyterian in Newport Beach. The amazing young pianist, Umi Garrett, will be performing again (she will literally be stepping off an airplane that same day from an international performance)! This time, all the proceeds will benefit agencies that support families going through cancer (Miracles for Kids, Beckstrand Cancer Foundation, Kristies Foundation and Red Wagon Foundation). Updated info will soon be available on www.jamminforjulian.org.
Thank you for your continued prayers. His MRI is tomorrow and there will be many more to follow. Blessings to you!
Andrea, Rich & boys
Dear Friends,
Spring is definitely a time of new beginnings. The flowers are blooming; the sun is warming things up; a pair of duckies has been visiting our front yard recently looking for bread scraps; and Easter was beautiful. It has truly been a time of rejuvenation for us. It all started two Fridays ago when Julian had his NG tube removed. We had been anticipating this for weeks and it finally happened. For the first time in 15 months, he has not been connected at night to a pump of one sort or another. No more alarms, beeps, bags and tubes! He is eating OK, preferring sweets to veggies, but he knows he needs to keep eating or that tube goes back in. Now he is asking when his other set of tubes, his central line, will be removed. He has started sleeping in his bunk bed again and Nolan is so happy to have his brother back. In more ways than ever, he is like a regular kid again. Tomorrow is his next MRI and in a few weeks a final infusion of antibiotic. Then his central line will be removed and our clinic visits will be reduced to monthly.
His hair is growing back, too, and his energy levels are increasing. He recently went to an Angel game with Rich (his first since March of 2008), and on Easter Sunday we went to church and had dinner with both sides of the family. That made up for last Easter when he woke up with a fever that put him in the hospital for about 9 days. We sure enjoyed spring break, too. We had lunch at Ruby’s Café at the end of the pier and saw a sea lion and a pod of dolphins nearby (I overheard someone at another table calling them a 'pod' so now I'm using that word). It was a cloudy, rainy day, and most people stayed away from the beach, but the sun broke out and it was gorgeous. The boys also got a close-up visit at a fire station (thanks Minda!) where the firefighters treated them like VIPs. And, Julian’s biggest wish was fulfilled last weekend: he has been aching to hold a baby chickie. We’ve seen them behind glass in incubators but we finally found some chicks at the Youth Expo that he could pet and hold. He was so happy. The boys also got to pet bunnies there and learned all about different rabbit breeds (for ‘future pet planning’). [Note to any of his nurses who might be reading this: I promise he washed his hands right afterwards followed by antibacterial gel!]
There is much more I can write but one thing I must include is that "Jammin’ for Julian II" is in the works. People have been asking us if we were going to do another one, so we’ve set 4 p.m. May 16 as the date and the location is going to be St. Mark’s Presbyterian in Newport Beach. The amazing young pianist, Umi Garrett, will be performing again (she will literally be stepping off an airplane that same day from an international performance)! This time, all the proceeds will benefit agencies that support families going through cancer (Miracles for Kids, Beckstrand Cancer Foundation, Kristies Foundation and Red Wagon Foundation). Updated info will soon be available on www.jamminforjulian.org.
Thank you for your continued prayers. His MRI is tomorrow and there will be many more to follow. Blessings to you!
Andrea, Rich & boys
Monday, March 22, 2010
Message from Andrea - March 21, 2010
I would like to ask you to keep a young lady named Julia in your prayers. Julia is 15-years-old and has been battling craniopharyngioma since she was nine. She has gone through various surgeries, life-threatening infection, radiation and extensive rehabilitation and spent nearly 14 months during a 2-year period in the hospital or in rehabilitation. I've never met her, but many years ago her mother, Carla, spent a summer at our house back in 1977. Carla's mom and my mom were friends when they were school girls in Holland. I visited Carla and her family when I went back for a visit in the early '80s. Gradually, as the years passed, we lost touch, but we recently reconnected via Facebook. How great to catch up again. The internet has wiped away the many miles between California and Holland, and we can chat and catch up in an instant (fortunately, the Dutch speak and write very good English). But sad to hear that she has gone through such a long ordeal, and now to learn that Julia's condition has recently worsened. There is now a new cyst pressing on her brainstem. It's a dangerous situation and her doctors are going to determine her options on Tuesday next week. Please keep all of them, Carla, Julia, her other daughter Stephanie, and the doctors in your prayers. Thank you!
Thursday, March 11, 2010
Message from Andrea, Rich and the boys - March 11, 2010
It has been over a month since I’ve sent an update on Julian, so it’s high time! These past weeks have just flown by and part of the reason I haven’t put an update together is that it’s been nice simply not having to think about clinic appointments and medical “stuff” for a while. The number of visits we’ve made to CHOC lately has really dropped off and it’s been nice to just have time for some normalcy. I’ve actually caught myself having moments when I had forgotten Julian had cancer. Of course, those are usually followed by a deeper realization that my child has cancer and thoughts about what would happen if a future scan shows a recurrence, but then the stuff of life pushes those thoughts away again and we get busy doing the things we need to do. We’ve gone to the snow for a day (an absolutely perfect day), to a jazz concert, to a few of Nolan’s basketball games, to the park, to church, to the movies and to the store to pick up some decorations. (Julian loves to decorate the house for holidays and had fun with Valentine's Day. The house is now decorated for St. Paddy's day. You'd think we were Irish or something!) Our outings are short and we usually have to go home early, but it’s been great to get out as a family again.
Julian is now in his final week of his 6-week recovery period from his last chemo. His hair is just now beginning to grow back. His skin color is looking better and he has more energy. He is also starting to eat a bit more and joins us for a meal or two each day. His “meals” still consist of only a bite or two, but he is trying different foods and it is nice to have him at the table with us. It will be a few more weeks until we can justify having the NG tube removed since he still needs the calories he gets from the night-time formula feeds. When we go to places where there are other children, there usually is a child who will ask him what the tube is for. Maybe those questions will also motivate him to want it removed.
He still has his catheter port (aka “his tubies”) in his chest and will probably have it removed after his next MRI which is in April. After that, he’ll have to be poked when blood draws are required or if an IV needs to be started. That will be tough, but on the other hand, he’ll enjoy the freedom to go swimming this summer and not to have to protect his tummy likes he has to now. He still needs to have two more infusions of antibiotic, as well as blood draws every two weeks for now, so it’s very convenient and pain-free to have that port right now.
He has also received a set of hearing aids. He picked out a bright red color and seemed to perk up that first day he wore them; he certainly could hear better with them. But he’s been reluctant to wear them around the house since he can function quite well without them. His audiograms continue to show that there has been no further hearing damage since November. But when school starts in the fall, and when he’ll be in an environment with lots of competing sounds, it will be very good to have those hearing aids for him. Yes, we are planning to get him ready for first grade! I hope and pray that all will go well with that adjustment and that he’ll have exactly the kind of teacher he needs. Julian seems to be on track with Kindergarten reading and math. His challenge is using his right hand for writing and it will probably continue to be a challenge for him in the years to come. He compensates with his left hand, but doesn’t have the control with it since he is naturally right-handed. He gets a bit tired of the work, so his endurance levels will definitely need to increase to handle a full day of first grade. Right now he has a teacher who comes to the house three times a week about 90 minutes each visit.
The other thing we’re working on is helping him make some friends. All his peers go to school during the day and his close neighborhood friend just moved last week. Since he has more time on his hands now, we’re exploring some home school groups and will try and meet a group for a park play date this week so he’ll hopefully meet some new friends his age. Nolan’s been a great big brother to Julian and plays with him as much as possible, but Little League is starting and that is Nolan’s big love so he’ll be busy with that for a while.
And finally, we have been meeting with the Make a Wish Foundation and they are working on a wish for Julian. I don’t have all the details yet, but I’m excited about it!
I am thankful for these past weeks and for your prayers. Thank you so much for partnering with us in prayer through this journey.
With love,Andrea, Rich and boys
})
Julian is now in his final week of his 6-week recovery period from his last chemo. His hair is just now beginning to grow back. His skin color is looking better and he has more energy. He is also starting to eat a bit more and joins us for a meal or two each day. His “meals” still consist of only a bite or two, but he is trying different foods and it is nice to have him at the table with us. It will be a few more weeks until we can justify having the NG tube removed since he still needs the calories he gets from the night-time formula feeds. When we go to places where there are other children, there usually is a child who will ask him what the tube is for. Maybe those questions will also motivate him to want it removed.
He still has his catheter port (aka “his tubies”) in his chest and will probably have it removed after his next MRI which is in April. After that, he’ll have to be poked when blood draws are required or if an IV needs to be started. That will be tough, but on the other hand, he’ll enjoy the freedom to go swimming this summer and not to have to protect his tummy likes he has to now. He still needs to have two more infusions of antibiotic, as well as blood draws every two weeks for now, so it’s very convenient and pain-free to have that port right now.
He has also received a set of hearing aids. He picked out a bright red color and seemed to perk up that first day he wore them; he certainly could hear better with them. But he’s been reluctant to wear them around the house since he can function quite well without them. His audiograms continue to show that there has been no further hearing damage since November. But when school starts in the fall, and when he’ll be in an environment with lots of competing sounds, it will be very good to have those hearing aids for him. Yes, we are planning to get him ready for first grade! I hope and pray that all will go well with that adjustment and that he’ll have exactly the kind of teacher he needs. Julian seems to be on track with Kindergarten reading and math. His challenge is using his right hand for writing and it will probably continue to be a challenge for him in the years to come. He compensates with his left hand, but doesn’t have the control with it since he is naturally right-handed. He gets a bit tired of the work, so his endurance levels will definitely need to increase to handle a full day of first grade. Right now he has a teacher who comes to the house three times a week about 90 minutes each visit.
The other thing we’re working on is helping him make some friends. All his peers go to school during the day and his close neighborhood friend just moved last week. Since he has more time on his hands now, we’re exploring some home school groups and will try and meet a group for a park play date this week so he’ll hopefully meet some new friends his age. Nolan’s been a great big brother to Julian and plays with him as much as possible, but Little League is starting and that is Nolan’s big love so he’ll be busy with that for a while.
And finally, we have been meeting with the Make a Wish Foundation and they are working on a wish for Julian. I don’t have all the details yet, but I’m excited about it!
I am thankful for these past weeks and for your prayers. Thank you so much for partnering with us in prayer through this journey.
With love,Andrea, Rich and boys
})
Monday, February 1, 2010
Transitioning - Message from Andrea January 30, 2010
Posted Jan 30, 2010 1:18am
Today was Julian's final outpatient chemo push. No more chemo!! I remember thinking months ago, when Julian was eyeing Nolan's baseball trophies and he asked when he was ever going to get a trophy, I was determined to get him one for going through all the things he has had to go through. Every child going through cancer treatment deserves a trophy! Well, the nurses beat me to it and presented him with one today that has a big star and is inscribed with, "Congratulations! You Are Our Hero. Love, Your CHOC Oncology Team." I thought that was a very cool thing to do and it is proudly displayed in the center of our mantle. Thank you CHOC doctors, nurses and staff! They are all awesome and such tremendous partners in this process. We won't really have any time to miss them because Julian already has appointments on the books for clinic visits next week and for the weeks thereafter. In fact, he'll be monitored for 10 years. I tried to explain to him that, yes, chemo is done, but he will still be going to CHOC many more times, for a long time.
Up until now, he's had a central line and hasn't had an injection through his skin since Dec '08. Everything goes right into that port which goes directly into a main artery; convenient but always at-risk for infection. He'll have the central line removed in late February. After that, when blood draws are needed or if IV medicines are needed, he'll be poked and he'll probably wonder why we said he was "done." So, we've tried to downplay the end of chemo a bit because truthfully, while he's finished with one phase, he's entering a new phase and each new phase of this journey has its own set of challenges.
He will need brain/spine MRIs every 2-3 months and he had one done yesterday. Praise God, the results show there has been no change since the last one. The longer we can go without any changes, the better! Regarding eating, he still just nibbles about once a day (a few bites of pancakes this morning), but he often will want to try something new (today he said he wants to have some Cheetos; not sure if you would call Cheetos food, but it's something). Once he starts to feel better, we'll really be focusing on foods so he can get that tube out of his nose.
This morning, Rich was encouraging Julian and told him that he'll be doing great things when he grows up. Julian's reply: "Daddy, I'm already doing great things." How true!
God bless you for your prayers and please, please keep them coming! We have many prayer requests; always at the top of the list is that the chemo and radiation will have permanently wiped out the cancer cells and that there will be no secondary malignancy later. We are grateful for your encouragement; your messages are therapeutic and being able to update you is therapeutic. His journey is far from over and we will keep you posted in the weeks and months to come.
Today was Julian's final outpatient chemo push. No more chemo!! I remember thinking months ago, when Julian was eyeing Nolan's baseball trophies and he asked when he was ever going to get a trophy, I was determined to get him one for going through all the things he has had to go through. Every child going through cancer treatment deserves a trophy! Well, the nurses beat me to it and presented him with one today that has a big star and is inscribed with, "Congratulations! You Are Our Hero. Love, Your CHOC Oncology Team." I thought that was a very cool thing to do and it is proudly displayed in the center of our mantle. Thank you CHOC doctors, nurses and staff! They are all awesome and such tremendous partners in this process. We won't really have any time to miss them because Julian already has appointments on the books for clinic visits next week and for the weeks thereafter. In fact, he'll be monitored for 10 years. I tried to explain to him that, yes, chemo is done, but he will still be going to CHOC many more times, for a long time.
Up until now, he's had a central line and hasn't had an injection through his skin since Dec '08. Everything goes right into that port which goes directly into a main artery; convenient but always at-risk for infection. He'll have the central line removed in late February. After that, when blood draws are needed or if IV medicines are needed, he'll be poked and he'll probably wonder why we said he was "done." So, we've tried to downplay the end of chemo a bit because truthfully, while he's finished with one phase, he's entering a new phase and each new phase of this journey has its own set of challenges.
He will need brain/spine MRIs every 2-3 months and he had one done yesterday. Praise God, the results show there has been no change since the last one. The longer we can go without any changes, the better! Regarding eating, he still just nibbles about once a day (a few bites of pancakes this morning), but he often will want to try something new (today he said he wants to have some Cheetos; not sure if you would call Cheetos food, but it's something). Once he starts to feel better, we'll really be focusing on foods so he can get that tube out of his nose.
This morning, Rich was encouraging Julian and told him that he'll be doing great things when he grows up. Julian's reply: "Daddy, I'm already doing great things." How true!
God bless you for your prayers and please, please keep them coming! We have many prayer requests; always at the top of the list is that the chemo and radiation will have permanently wiped out the cancer cells and that there will be no secondary malignancy later. We are grateful for your encouragement; your messages are therapeutic and being able to update you is therapeutic. His journey is far from over and we will keep you posted in the weeks and months to come.
Friday, January 15, 2010
Almost Fnished
Almost finished!
Posted 14 hours ago
Julian goes in for his last round of chemo tomorrow! So happy that he is at the finish line and can't wait for him to feel better and get back to living life again. He has been such an amazing trooper through everything. It will take about six weeks to recover from this round and then his hair should start coming back again and he'll hopefully be feeling much better. We'll have to work on his eating so he can have the NG tube removed and he'll have lots of MRIs and follow-ups, but at least we're just about done with chemo!!!
This morning he had an audiogram done at Providence and, incredibly, there was no change since the last hearing test done in November and even a very slight improvement. The doctor said it could be that he was more focused on listening for the sounds this time, or maybe even due to the special medicine he was given before his last round of cisplatin. Probably we'll never know, but it is very encouraging. He'll be getting that medicine again to help protect against the effects of cisplatin tomorrow. We're so thankful that there are these options and that his hearing is stable right now. In a few weeks, he'll have another hearing test and then receive his hearing aids. He wasn't too thrilled about the idea of wearing hearing aids, but once he's in a classroom full of kids and sounds, he'll be glad he has them.
Well, gotta go and pack our bags!
P.S. Months ago, I asked for prayer for a boy named Noah. He passed away last October. His mother is amazing and just wrote a beautiful update. The name of the Carepage is NoahDowell.
Posted 14 hours ago
Julian goes in for his last round of chemo tomorrow! So happy that he is at the finish line and can't wait for him to feel better and get back to living life again. He has been such an amazing trooper through everything. It will take about six weeks to recover from this round and then his hair should start coming back again and he'll hopefully be feeling much better. We'll have to work on his eating so he can have the NG tube removed and he'll have lots of MRIs and follow-ups, but at least we're just about done with chemo!!!
This morning he had an audiogram done at Providence and, incredibly, there was no change since the last hearing test done in November and even a very slight improvement. The doctor said it could be that he was more focused on listening for the sounds this time, or maybe even due to the special medicine he was given before his last round of cisplatin. Probably we'll never know, but it is very encouraging. He'll be getting that medicine again to help protect against the effects of cisplatin tomorrow. We're so thankful that there are these options and that his hearing is stable right now. In a few weeks, he'll have another hearing test and then receive his hearing aids. He wasn't too thrilled about the idea of wearing hearing aids, but once he's in a classroom full of kids and sounds, he'll be glad he has them.
Well, gotta go and pack our bags!
P.S. Months ago, I asked for prayer for a boy named Noah. He passed away last October. His mother is amazing and just wrote a beautiful update. The name of the Carepage is NoahDowell.
Monday, January 4, 2010
Familiar Stomping Grounds - Message from Andrea 1/3/10
Posted 14 hours ago
Julian is sleeping soundly in room 321 at CHOC tonight and we expect to go home tomorrow. Kept the healthcare system fairly busy last week: two clinic visits, chemo push, NG tube replacement, home health visit, three days of special meds to boost his white blood cell production, a blood transfusion, ER visit and two nights at CHOC. In between he did have fun playing with his Christmas toys and going to the beach for a short while on New Year's Eve. But we were pretty worried yesterday afternoon when he said his shunt hurt and it looked fairly swollen and even appeared as if it had shifted downward. Bracing for news that he might need surgery to replace it. In the ER, they did an x-ray and a CT scan and, thankfully, the shunt is working just fine. (Earlier in the week, Julian had taken a tumble on the front lawn and said he had bumped his head, so these scans eased our concerns that his fall had caused any problems.) But because of the swelling and tenderness there could have been an infection, so the doctors wanted to watch him for a night or two and give him antibiotics. He also needed a blood transfusion because his red blood cell count was low again. So, we took care of business and spent the first couple of days of the new year at CHOC, but so glad he was in caring and capable hands and that he is feeling much better now. Want to wish you all a wonderful New Year and thank you for riding this roller coaster with us. Your prayers continue to help Julian through each dip and sudden turn on that ride. The events of this past week certainly confirm that! And thanks to Him for protecting Julian from injury and so much more (i.e. amazingly, he didn't catch my flu bug a few weeks ago!)
Julian is sleeping soundly in room 321 at CHOC tonight and we expect to go home tomorrow. Kept the healthcare system fairly busy last week: two clinic visits, chemo push, NG tube replacement, home health visit, three days of special meds to boost his white blood cell production, a blood transfusion, ER visit and two nights at CHOC. In between he did have fun playing with his Christmas toys and going to the beach for a short while on New Year's Eve. But we were pretty worried yesterday afternoon when he said his shunt hurt and it looked fairly swollen and even appeared as if it had shifted downward. Bracing for news that he might need surgery to replace it. In the ER, they did an x-ray and a CT scan and, thankfully, the shunt is working just fine. (Earlier in the week, Julian had taken a tumble on the front lawn and said he had bumped his head, so these scans eased our concerns that his fall had caused any problems.) But because of the swelling and tenderness there could have been an infection, so the doctors wanted to watch him for a night or two and give him antibiotics. He also needed a blood transfusion because his red blood cell count was low again. So, we took care of business and spent the first couple of days of the new year at CHOC, but so glad he was in caring and capable hands and that he is feeling much better now. Want to wish you all a wonderful New Year and thank you for riding this roller coaster with us. Your prayers continue to help Julian through each dip and sudden turn on that ride. The events of this past week certainly confirm that! And thanks to Him for protecting Julian from injury and so much more (i.e. amazingly, he didn't catch my flu bug a few weeks ago!)
Monday, December 28, 2009
Merry Christmas to All - December 24th
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!
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 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.
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