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.
Thursday, April 15, 2010
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!)
Subscribe to:
Posts (Atom)
