Summer days
Posted 1 day ago
Summer days are (now) wonderful! Nolan and Rich have been going to Corona del Mar beach in the late afternoons lately where they have been boogie boarding and body surfing. Well, out of the blue one afternoon last week Julian said he, too, wanted to go! Prior to this, he was pretty determined to remain put at home. So, we packed our bags and off we went. It was the most wonderful hour-and-a-half I can remember in a long while. Julian was content to play with his sand toys while Nolan and Rich rode the waves. (After a week of huge waves, the day we were there it was safe and the water was turquoise clear.) This little afternoon outing sure cured a severe case of cabin fever! Today, Julian wanted to go again. Yippie! And, in a county of 3 million people, who found us at the beach? His grandma & grandpa and cousins, who had the same inkling to escape the heat as we did and knew just where to look for us! I am just now learning how to post photos on this website, so I hope these show up:
Some other special things:Julian has been getting special handmade cards every few days in the mail from some very nice people at Send Love Today (www.sendlovetoday.org). They send encouraging cards to people being treated for brain tumors. If I had the talent and time, it would be so neat to volunteer for this group!
Today, he received in the mail a CD with a song that was written just for him. It's really good! I can't copy it because I think its protected, but there is a link if you would like to hear it: www.songsoflove.org then click on Family & Friends Song & Ringtone Dowload link (toward the bottom of the page). Type in Dunn for the child's last name and the number 19624 in the 'record number' field. The small donation helps them continue to write songs for other kids with serious illnesses.
All in all, Julian is doing about as well as he has since this began. Still not eating and still having some nausea, but he is gaining weight, happy and as sweet as ever. I think the fact that he wanted to go to the beach shows he is feeling so much better these days. He had his NG tube changed out last week (that is always a bummer). A clinic visit this Thursday (and maybe a blood transfusion), and then a few weeks until another round of chemo. Thank you all for your love and prayers!
Wednesday, August 5, 2009
Monday, July 20, 2009
Message from Andrea - July 20, 2009
How long does it take to pick up 771 pieces of Legos?
Posted 1 hour ago
Actually, not too long, but on a hardwood floor it is very tedious. Yes, we are home! Julian was able to leave the hospital earlier than anticipated and, although his nausea is worse than normal and he is pretty tired, he is well enough to enjoy his Legos including a new creation: a fire engine we built this weekend (the one with 771 pieces that went flying all over the place). He'll have an outpatient push of chemo this week and then a few weeks of rest. Thank you to everyone for your prayers and sweet wishes for Julian! They are making such a difference.
P.S. His eyebrows and eyelashes are now going, but he says he likes his "peachy" skin.
Posted 1 hour ago
Actually, not too long, but on a hardwood floor it is very tedious. Yes, we are home! Julian was able to leave the hospital earlier than anticipated and, although his nausea is worse than normal and he is pretty tired, he is well enough to enjoy his Legos including a new creation: a fire engine we built this weekend (the one with 771 pieces that went flying all over the place). He'll have an outpatient push of chemo this week and then a few weeks of rest. Thank you to everyone for your prayers and sweet wishes for Julian! They are making such a difference.
P.S. His eyebrows and eyelashes are now going, but he says he likes his "peachy" skin.
Wednesday, July 15, 2009
Message from Andrea - July 13, 2009
Getting ready for another round
Dear friends: our last 'break' was two weeks shorter than the others, so Julian will be going in for his next round of chemo already this Thursday, July 16. He doesn't really mind, though, he is such a little trooper. He is scheduled to be at CHOC from the 16-18, so if all goes well, he'll be home by the end of the weekend. Rich and I would really appreciate your prayers for him. The idea of these toxic chemicals going through him can be a bit scary and the effects don't always show up right away, too. But, we know God is good. When Julian came down with that infection last month he weathered it well even though the MD later said it could have been much more serious. And, his MRI showed that the site where the tumor had been has healed very, very well.
About a month ago, Julian's hair began to grow back and it came back in a shade of light brown. He had a full head of hair in early July, but then one day it all came off. So, now he is pretty much totally bald. He still has his long eyelashes and his eyebrows, though, and his big smile. He has been feeling pretty well lately and has been enjoying his 'big brudder,' Nolan. Those two have so much fun together. Hopefully, we'll be home soon so he can do more of the same!
Dear friends: our last 'break' was two weeks shorter than the others, so Julian will be going in for his next round of chemo already this Thursday, July 16. He doesn't really mind, though, he is such a little trooper. He is scheduled to be at CHOC from the 16-18, so if all goes well, he'll be home by the end of the weekend. Rich and I would really appreciate your prayers for him. The idea of these toxic chemicals going through him can be a bit scary and the effects don't always show up right away, too. But, we know God is good. When Julian came down with that infection last month he weathered it well even though the MD later said it could have been much more serious. And, his MRI showed that the site where the tumor had been has healed very, very well.
About a month ago, Julian's hair began to grow back and it came back in a shade of light brown. He had a full head of hair in early July, but then one day it all came off. So, now he is pretty much totally bald. He still has his long eyelashes and his eyebrows, though, and his big smile. He has been feeling pretty well lately and has been enjoying his 'big brudder,' Nolan. Those two have so much fun together. Hopefully, we'll be home soon so he can do more of the same!
Tuesday, June 23, 2009
Message from Andrea - June 23, 2009
It's good to be home
Posted 11 hours ago
We were able to go home Saturday and it feels "grand," as Julian likes to say. Just in time for Father's Day when we went on a bike ride around the neighborhood (Julian still fits in a bike trailer and enjoyed the nice breeze).
He's on IV antibiotics for another 4 days and then it will be down to only nine daily medicines (LOL). We hope to keep those nasty bugs away for a long time! He'll have another push of chemo this week and then 3 weeks until the next cycle.
His MRI came back clear and the P.A. remarked it's hard to tell there ever was a large tumor in his brain; he was pretty amazed by the difference between this MRI and one six months ago. They could see that his ventricles were too small, though, meaning a bit too much fluid was leaving his brain, so they had to recalibrate the setting on his shunt by simply using what amounts to a magnet placed on the outside of his head. After a few painless clicks, he was recalibrated.
Today, Julian wanted to go to Adventure City, a place he used to love. It's perfect for kids his age. For him, the outing was quite an undertaking and he lasted all of 35 minutes. We rode a kiddie train around the park, watched a 5-minute puppet show and then he said he was tired and wanted to go home. It was kind of sad to see how little he was able to do and how he shied away from even the gentle rides he used to enjoy in the past. I keep wondering if he'll ever be able to do the things kids his age do when this is all over or if it will ever be over.
Feeling a little melancholy, I admit, but during the last stay at CHOC I was updated on Cody, a boy with the same type of cancer as Julian. He had been in remission for about 2 years, was just about to go from 3-month to 6-month intervals for his MRIs -- which had been clear the entire time -- when small, rice-sized tumors appeared on his spine in a short amount of time. We shared a room with Cody in March when he first relapsed and he has been fighting for his life ever since. Survival rates for a relapse go down to 25%. I've learned of two more kids at CHOC (totalling 3 out of 7) who have relapsed with this disease. I need to find out if they (the MDs) can point to some reason this is happening. So....we accept all the victories -- and believe me, we are thankful for so much and just to be home is wonderful -- but are more aware of the realities, too. For the moment, I'm glad my little boy is sleeping soundly tonight. God bless.
Posted 11 hours ago
We were able to go home Saturday and it feels "grand," as Julian likes to say. Just in time for Father's Day when we went on a bike ride around the neighborhood (Julian still fits in a bike trailer and enjoyed the nice breeze).
He's on IV antibiotics for another 4 days and then it will be down to only nine daily medicines (LOL). We hope to keep those nasty bugs away for a long time! He'll have another push of chemo this week and then 3 weeks until the next cycle.
His MRI came back clear and the P.A. remarked it's hard to tell there ever was a large tumor in his brain; he was pretty amazed by the difference between this MRI and one six months ago. They could see that his ventricles were too small, though, meaning a bit too much fluid was leaving his brain, so they had to recalibrate the setting on his shunt by simply using what amounts to a magnet placed on the outside of his head. After a few painless clicks, he was recalibrated.
Today, Julian wanted to go to Adventure City, a place he used to love. It's perfect for kids his age. For him, the outing was quite an undertaking and he lasted all of 35 minutes. We rode a kiddie train around the park, watched a 5-minute puppet show and then he said he was tired and wanted to go home. It was kind of sad to see how little he was able to do and how he shied away from even the gentle rides he used to enjoy in the past. I keep wondering if he'll ever be able to do the things kids his age do when this is all over or if it will ever be over.
Feeling a little melancholy, I admit, but during the last stay at CHOC I was updated on Cody, a boy with the same type of cancer as Julian. He had been in remission for about 2 years, was just about to go from 3-month to 6-month intervals for his MRIs -- which had been clear the entire time -- when small, rice-sized tumors appeared on his spine in a short amount of time. We shared a room with Cody in March when he first relapsed and he has been fighting for his life ever since. Survival rates for a relapse go down to 25%. I've learned of two more kids at CHOC (totalling 3 out of 7) who have relapsed with this disease. I need to find out if they (the MDs) can point to some reason this is happening. So....we accept all the victories -- and believe me, we are thankful for so much and just to be home is wonderful -- but are more aware of the realities, too. For the moment, I'm glad my little boy is sleeping soundly tonight. God bless.
Wednesday, June 17, 2009
Message from The Dunns - June 17, 2009
The sun is breaking through the clouds
Yippee, the infection seems to be under control. It was in his Broviac after all, and blood drawn from each tube is now showing up negative for the infection, so the meds are working (and so are the prayers)!! Julian is feeling well and has had no fevers, so that is all good news. He did have his MRI yesterday (haven't heard the results yet) and will start his chemo tomorrow, with only a 1-day delay. The M.D. said that if he feels OK, we can probably go home Saturday and continue with his course of antibiotics at home. He had a hearing test today and is showing a slight deficit in one ear, so we'll have to watch that. Thank you, prayer warriors, we are so grateful!
In Him,
Andrea, Rich, Nolan and Julian
Yippee, the infection seems to be under control. It was in his Broviac after all, and blood drawn from each tube is now showing up negative for the infection, so the meds are working (and so are the prayers)!! Julian is feeling well and has had no fevers, so that is all good news. He did have his MRI yesterday (haven't heard the results yet) and will start his chemo tomorrow, with only a 1-day delay. The M.D. said that if he feels OK, we can probably go home Saturday and continue with his course of antibiotics at home. He had a hearing test today and is showing a slight deficit in one ear, so we'll have to watch that. Thank you, prayer warriors, we are so grateful!
In Him,
Andrea, Rich, Nolan and Julian
Monday, June 15, 2009
Message from Andrea - June 14, 2009
Clouds on the horizon
Posted 13 hours ago
Hello! Finally, a long overdue update on Julian.
While Julian’s had a nice break between chemotherapy cycles these past few weeks, last week ended with another trip to the Emergency Room. Thursday night he couldn’t keep anything down and had chills, woke up with a headache and just didn’t seem well, so we went to the clinic. He was started on antibiotics just to be safe, labs drawn and we were able to go home. But later that afternoon, a fever and a headache hit him quickly and we knew the routine that awaited us: rush to the E. R. and plan on being in the hospital at least 2-3 nights (standard routine for oncology patients with a central line to rule out an infection in his Broviac). His fever continued during the night, but by morning he began to feel much better. Unfortunately, the blood culture reveals he has a bacterial infection (pseudomona) and will need a 10-day course of an IV antibiotic. They know how to treat this bacteria but it isn’t harmless and can cause complications if it resists the treatment. It also means that his scheduled chemotherapy (round 3 was supposed to start this Wednesday) will be postponed for a bit. Today’s M.D. said not to worry, as long as it isn’t postponed say, for 4 weeks or so (medulloblastoma is so aggressive), there aren’t any concerns about impact on Julian’s long-term outcomes.
So… we would greatly appreciate your prayers that the infection will respond to the antibiotics and that there will be no additional complications or opportunity for cancer cells to grow. There are always potential complications for kids who have compromised immune systems. It seems like the sky is the limit in terms of things that could happen to them.
I will find out tomorrow if we’ll have to remain at CHOC for the next 10 days or if we can go home on home health care. He is still isolated due to being MRSA positive, so we don’t cherish the idea of him being stuck in this room for 10 days…
He was also scheduled for an MRI this coming Wednesday, but at this point I don’t know if that will still remain on the books for this week. Each day, we find out a little more.
Prior to this episode, we’ve had a fairly uneventful few weeks – a welcome state of being in our case. Although there was a brief hospital stay in May for a fever, he tolerated his second round of chemo in May really well and was a trooper going to follow-up clinic appointments and even getting a new nasal/gastric tube placed in his nose and having the old one pulled out. We went to Nolan’s last few Little League games, the team party, short trips to the library and a special outing to the La Habra Children’s Museum last week (they opened the doors early so Julian could have the place to himself for an hour). His preschool, Lil’ Lighthouse Preschool, included him in their graduation activities last Tuesday even though he hasn’t been to school since Dec. 4 and made him feel very special. So, we’ve had a wonderful and semi-normal few weeks lately.
But during times of calmness like what we had in May and early June, there is always the nagging question in the back of my mind, “is this the calm before the storm?” We still have 32 weeks of treatment ahead of us, so we dearly hope that any storms Julian encounters -- including the current one-- will be like the storms we have in Southern California: really mild and hardly worth mentioning on the 6 o’clock news. God bless.
Posted 13 hours ago
Hello! Finally, a long overdue update on Julian.
While Julian’s had a nice break between chemotherapy cycles these past few weeks, last week ended with another trip to the Emergency Room. Thursday night he couldn’t keep anything down and had chills, woke up with a headache and just didn’t seem well, so we went to the clinic. He was started on antibiotics just to be safe, labs drawn and we were able to go home. But later that afternoon, a fever and a headache hit him quickly and we knew the routine that awaited us: rush to the E. R. and plan on being in the hospital at least 2-3 nights (standard routine for oncology patients with a central line to rule out an infection in his Broviac). His fever continued during the night, but by morning he began to feel much better. Unfortunately, the blood culture reveals he has a bacterial infection (pseudomona) and will need a 10-day course of an IV antibiotic. They know how to treat this bacteria but it isn’t harmless and can cause complications if it resists the treatment. It also means that his scheduled chemotherapy (round 3 was supposed to start this Wednesday) will be postponed for a bit. Today’s M.D. said not to worry, as long as it isn’t postponed say, for 4 weeks or so (medulloblastoma is so aggressive), there aren’t any concerns about impact on Julian’s long-term outcomes.
So… we would greatly appreciate your prayers that the infection will respond to the antibiotics and that there will be no additional complications or opportunity for cancer cells to grow. There are always potential complications for kids who have compromised immune systems. It seems like the sky is the limit in terms of things that could happen to them.
I will find out tomorrow if we’ll have to remain at CHOC for the next 10 days or if we can go home on home health care. He is still isolated due to being MRSA positive, so we don’t cherish the idea of him being stuck in this room for 10 days…
He was also scheduled for an MRI this coming Wednesday, but at this point I don’t know if that will still remain on the books for this week. Each day, we find out a little more.
Prior to this episode, we’ve had a fairly uneventful few weeks – a welcome state of being in our case. Although there was a brief hospital stay in May for a fever, he tolerated his second round of chemo in May really well and was a trooper going to follow-up clinic appointments and even getting a new nasal/gastric tube placed in his nose and having the old one pulled out. We went to Nolan’s last few Little League games, the team party, short trips to the library and a special outing to the La Habra Children’s Museum last week (they opened the doors early so Julian could have the place to himself for an hour). His preschool, Lil’ Lighthouse Preschool, included him in their graduation activities last Tuesday even though he hasn’t been to school since Dec. 4 and made him feel very special. So, we’ve had a wonderful and semi-normal few weeks lately.
But during times of calmness like what we had in May and early June, there is always the nagging question in the back of my mind, “is this the calm before the storm?” We still have 32 weeks of treatment ahead of us, so we dearly hope that any storms Julian encounters -- including the current one-- will be like the storms we have in Southern California: really mild and hardly worth mentioning on the 6 o’clock news. God bless.
Tuesday, April 28, 2009
Message from Andrea - April 28, 2009
Musings
Posted 2 hours ago
Today is a nice, quiet day with Julian napping a bit this morning. He is doing OK lately. Tired of having tubes dangling from his chest and asking when those will be gone.... gaining some weight, working on his "homework" at times (worksheets and art projects provided by Lil' Lighthouse Preschool; we miss him going to school there!), and resting. Last Saturday, he went to Nolan's Little League game for the first time this season and it's more than half over. It was great to be there again -- even for 1/3 of the game. But mainly, he is resting up for his next round of chemo, May 6-8.
Since our last update, Julian did have a brief stay in the hospital (Easter Sunday plus 2 days) because of a fever at home that left as quickly as it came. Not sure if our thermometer was on the blink, but it was a good thing (actually, a God thing), in retrospect, that he spent a few days at CHOC right at that point because it so happened his white blood cell count was basically at zero. Had he caught anything then, he would have had no resistance and probably would have gotten a blood infection. So, we praise God again for orchestrating and maneuvering in ways that we do not fathom. And we thank you for your continued prayers.
We also found out that Julian tested positive again for the MRSA strain meaning that he'll be isolated again while in the hospital. So, if you come to visit, you'll have to gown up. Actually, with the swine flu going around, I'm kind of happy he'll be protected. (FYI: about 20% of the population has MRSA. It only becomes a problem when an infection flares up in vulnerable persons, i.e. the elderly and chronically ill.)
Good news: Julian's little friend who we met during radiation, Emily Galvan, had a clean MRI and is officially in remission! She has the same diagnosis as Julian. This is the news that family had been waiting for for a very long time and I'm sure they are absolutely loving life right now.
Please continue to pray for Julian, Emily, and new friends Adrian, Cody and another Julian.
Thank you to Julian's cousin, Lindsey, who is a blood donor match for him. He received her blood during his March hospital stay. You rock Lindsey (and so does your mom who is donating blood for other CHOC kids)! Anyone interested in becoming a blood donor for Julian or other CHOC patients should call (714) 532-8339 .
Blessings,Andrea
Posted 2 hours ago
Today is a nice, quiet day with Julian napping a bit this morning. He is doing OK lately. Tired of having tubes dangling from his chest and asking when those will be gone.... gaining some weight, working on his "homework" at times (worksheets and art projects provided by Lil' Lighthouse Preschool; we miss him going to school there!), and resting. Last Saturday, he went to Nolan's Little League game for the first time this season and it's more than half over. It was great to be there again -- even for 1/3 of the game. But mainly, he is resting up for his next round of chemo, May 6-8.
Since our last update, Julian did have a brief stay in the hospital (Easter Sunday plus 2 days) because of a fever at home that left as quickly as it came. Not sure if our thermometer was on the blink, but it was a good thing (actually, a God thing), in retrospect, that he spent a few days at CHOC right at that point because it so happened his white blood cell count was basically at zero. Had he caught anything then, he would have had no resistance and probably would have gotten a blood infection. So, we praise God again for orchestrating and maneuvering in ways that we do not fathom. And we thank you for your continued prayers.
We also found out that Julian tested positive again for the MRSA strain meaning that he'll be isolated again while in the hospital. So, if you come to visit, you'll have to gown up. Actually, with the swine flu going around, I'm kind of happy he'll be protected. (FYI: about 20% of the population has MRSA. It only becomes a problem when an infection flares up in vulnerable persons, i.e. the elderly and chronically ill.)
Good news: Julian's little friend who we met during radiation, Emily Galvan, had a clean MRI and is officially in remission! She has the same diagnosis as Julian. This is the news that family had been waiting for for a very long time and I'm sure they are absolutely loving life right now.
Please continue to pray for Julian, Emily, and new friends Adrian, Cody and another Julian.
Thank you to Julian's cousin, Lindsey, who is a blood donor match for him. He received her blood during his March hospital stay. You rock Lindsey (and so does your mom who is donating blood for other CHOC kids)! Anyone interested in becoming a blood donor for Julian or other CHOC patients should call (714) 532-8339 .
Blessings,Andrea
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