Wednesday, October 7, 2009
Message from Andrea - October 7, 2009
So much to write and so hard to condense it all. Most recent news first: Julian had an MRI today of his head and spine. Even after 3 surgeries and 27 sessions of radiation (where each time he was put under with propofyll -- aka Michael Jackson's famous ''milk''), it's still unnerving to have your child go under general anesthesia. We met with Dr. Loudon, his neurosurgeon, afterward who said, in his pensive way, that overall it looked good (Praise God) but there continues to be an ''enhancement' at the site where his tumor had originally been. He said they will watch it and discuss Julian's case at Tumor Board this week. It's probably the scar tissue, he said. We are so grateful that they did not see anything new. Truly, truly. It certainly could have been different news. Yet, the more we are learning about medulloblastoma, the harder this gets. It's a beast of a disease and very aggressive. That's why he needs MRIs every 3 months this year, and every 4 months next year, 6 months the year after that, etc. Recurrences at the site of the tumor are ''common'' and usually occur within the first 2 years, one article said. Significant impact on the endocrine system. Cognitive impact. Toxicity to various organs. Stature impacted. High-risk for another malignancy. Long-term, life-long health issues. I can go on and on. Early in his diagnosis, I clung to the words, ''he has an 80 -85% chance.'' I naively thought that, even though he would go through a year of treatment, we had dodged the bullet! I was so relieved that he had medulloblastoma and not one of the other brain cancers. But medulloblastoma itself is a terrible, terrible cancer and it is robbing him of so much now and in the future. I guess after learning that a boy named Noah (cp: NoahDowell), who was only one year older than Julian, died of brain cancer last weekend at CHOC and then reading more about what medullo is going to do to Julian over time, it just makes the nightmare worse. Forgive me for unloading. I usually try and keep things positive, but I just need to share my thoughts tonight. Maybe the fact that he is 2/3 of the way through is contributing to these feelings. Right now, we have a plan to hang on to, a protocol, and we are following it and, thank God it seems to be working. But when the chemo is done and we complete the plan, then what? How do we keep the beast away? There is no plan after that. Just to trust God even more. And pray. And live life. One day at a time. Just like the doctor told us the day after Julian's first surgery. ''Don't fret about if he'll marry someday, or go to college. Just take it one day at a time.'' It's simple advice and actually something you have to consciously practice, taking life one day at a time, but it really does help. And, as another friend said, one day at a time is all any of us really have, isn't it? Good night and blessings.
Wednesday, September 16, 2009
Message from Andrea - September 15, 2009
“What do clouds taste like?” Julian asked on the way to CHOC this morning. The freeway drive was actually kind of pretty today because of the white cloud puffs above us. The sky was bright blue so the clouds looked especially bright against it. “Do they taste like marshmallows?” They sure do, I said. I wanted to remember his observations today just like I want to remember our summer and all the late afternoons we spent at the beach. That last week of summer, we went to our favorite spot seven afternoons in a row including the night of Julian’s birthday (Lynn: that night we threw a sand dollar back in the ocean for you) and the evening of Nolan’s first day of school. Nolan didn’t have homework yet, so we decided to push the envelope one more time.
Julian said his birthday was his very best day ever. His oma and opa and grandma and grandpa were there as well as three school friends. It was a sweet morning and he really enjoyed himself. Thanks to all who sent him birthday wishes and to the three cutie pies who were able to come to his party! Sept. 3 was also a special day because his stomach felt OK that day. He had only been home from chemo for five days and the nausea was hitting him hard again, but that day, he had a ‘bummer-free’ morning and he felt good all day.
Now with Nolan in school and Julian missing him a lot, timing is such that his days are becoming filled with appointments: occupational therapy, physical therapy (good news: our insurance gave the OK for him to have OT and PT at home because he is immuno-suppressed), another audiogram to check his hearing (the last one showed significant loss since the June test), an MRI on Oct. 6 and his 6th round of chemo coming up Oct. 9. After that, he will have three more cycles of chemo bringing him to February 2010 when his treatment ends. We’ll know a lot more then about long-term effects and next steps, but we’ll have a big party and you are all invited!
Some special moments: Yesterday, Julian wanted to ride his tricycle on the driveway. He hadn’t been on that trike since last November and Rich and I were quietly celebrating this victory. While his peers are now learning to ride 2-wheelers without training wheels, Julian’s riding his tricycle again was a very big deal for him. And, true to his wonderful personality, he just enjoyed himself thoroughly.
We were also blessed by our little friend up the street, Lauren, who recently held her third lemonade stand for Julian on Balboa Island. (She and Julian may have been in the same kindergarten class had it not been for all of this.) We realized that this little girl is responsible for raising about $1,000 in total. Lauren, you are amazing (and so are your parents)!
Well, that’s our latest update. School starts Friday; his new home teacher will begin her afternoon visits then. We are looking forward to that. Also praying that his new case of sniffles won’t escalate. Thank you so much for your prayers. Blessings from us to you!
(Also, please pray for a boy named Noah Dowell and his family. He has brain cancer needs a miracle tonight. Thank you.)
Julian said his birthday was his very best day ever. His oma and opa and grandma and grandpa were there as well as three school friends. It was a sweet morning and he really enjoyed himself. Thanks to all who sent him birthday wishes and to the three cutie pies who were able to come to his party! Sept. 3 was also a special day because his stomach felt OK that day. He had only been home from chemo for five days and the nausea was hitting him hard again, but that day, he had a ‘bummer-free’ morning and he felt good all day.
Now with Nolan in school and Julian missing him a lot, timing is such that his days are becoming filled with appointments: occupational therapy, physical therapy (good news: our insurance gave the OK for him to have OT and PT at home because he is immuno-suppressed), another audiogram to check his hearing (the last one showed significant loss since the June test), an MRI on Oct. 6 and his 6th round of chemo coming up Oct. 9. After that, he will have three more cycles of chemo bringing him to February 2010 when his treatment ends. We’ll know a lot more then about long-term effects and next steps, but we’ll have a big party and you are all invited!
Some special moments: Yesterday, Julian wanted to ride his tricycle on the driveway. He hadn’t been on that trike since last November and Rich and I were quietly celebrating this victory. While his peers are now learning to ride 2-wheelers without training wheels, Julian’s riding his tricycle again was a very big deal for him. And, true to his wonderful personality, he just enjoyed himself thoroughly.
We were also blessed by our little friend up the street, Lauren, who recently held her third lemonade stand for Julian on Balboa Island. (She and Julian may have been in the same kindergarten class had it not been for all of this.) We realized that this little girl is responsible for raising about $1,000 in total. Lauren, you are amazing (and so are your parents)!
Well, that’s our latest update. School starts Friday; his new home teacher will begin her afternoon visits then. We are looking forward to that. Also praying that his new case of sniffles won’t escalate. Thank you so much for your prayers. Blessings from us to you!
(Also, please pray for a boy named Noah Dowell and his family. He has brain cancer needs a miracle tonight. Thank you.)
Wednesday, September 2, 2009
Dancing and giggling - August 27th
Posted Aug 27, 2009 2:17am
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
Dancing and giggling - August 27th
Posted Aug 27, 2009 2:17am
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
As Julian heads into his next round of chemo tomorrow, I'm glad to report that he has been doing so well these past few weeks. Not sure if it's the change in his feeding formula which he is tolerating much better, or if it is the benefit of time, or God graciously answering prayer, or all the above, but these past few weeks have, in a word, been progress. Julian has enjoyed going to our special spot on the beach many afternoons since our last update. Our visits are not long, but they are great, and we all love them (especially with our current heat wave in So Cal!). Another surprise came Sunday night when he agreed to go to the Concert in the Park. There was no hesitation, and he was silly and goofy and got up and danced. We suspect he really likes latin jazz! He says he wants to play with other kids now and wants to have a few buddies come to his birthday next week (up until now, he mainly wanted to stay to himself or just play with Nolan). This afternoon he and Nolan filled their water guns (actually, Nolan used one of Julian's syringes -- an interesting sight - no needles though) and squirted cars passing by (up until now, he wouldn't play in the front yard at all). Some of our neighbors were cool and got even cooler as they encouraged the boys to literally squirt them through their open car windows. There have been lots of giggles lately, and I hope his good spirits will continue over the next few days as he gets chemo. On the flip side, he had an audiogram last week and they are seeing more impact to his hearing and predict it will continue to deteriorate. But, we're a while away from hearing aids yet. In the meantime, we would ask once again for your kind prayers as Julian receives chemo, has his nasal tube changed out, for the future teacher who will be coming to the house once school starts, for his hearing, and, while I'm asking, for life-long remission. Thank you and many blessings!!
Wednesday, August 5, 2009
Message from Andrea - August 4, 2009
Summer days
Posted 1 day ago
Summer days are (now) wonderful! Nolan and Rich have been going to Corona del Mar beach in the late afternoons lately where they have been boogie boarding and body surfing. Well, out of the blue one afternoon last week Julian said he, too, wanted to go! Prior to this, he was pretty determined to remain put at home. So, we packed our bags and off we went. It was the most wonderful hour-and-a-half I can remember in a long while. Julian was content to play with his sand toys while Nolan and Rich rode the waves. (After a week of huge waves, the day we were there it was safe and the water was turquoise clear.) This little afternoon outing sure cured a severe case of cabin fever! Today, Julian wanted to go again. Yippie! And, in a county of 3 million people, who found us at the beach? His grandma & grandpa and cousins, who had the same inkling to escape the heat as we did and knew just where to look for us! I am just now learning how to post photos on this website, so I hope these show up:
Some other special things:Julian has been getting special handmade cards every few days in the mail from some very nice people at Send Love Today (www.sendlovetoday.org). They send encouraging cards to people being treated for brain tumors. If I had the talent and time, it would be so neat to volunteer for this group!
Today, he received in the mail a CD with a song that was written just for him. It's really good! I can't copy it because I think its protected, but there is a link if you would like to hear it: www.songsoflove.org then click on Family & Friends Song & Ringtone Dowload link (toward the bottom of the page). Type in Dunn for the child's last name and the number 19624 in the 'record number' field. The small donation helps them continue to write songs for other kids with serious illnesses.
All in all, Julian is doing about as well as he has since this began. Still not eating and still having some nausea, but he is gaining weight, happy and as sweet as ever. I think the fact that he wanted to go to the beach shows he is feeling so much better these days. He had his NG tube changed out last week (that is always a bummer). A clinic visit this Thursday (and maybe a blood transfusion), and then a few weeks until another round of chemo. Thank you all for your love and prayers!
Posted 1 day ago
Summer days are (now) wonderful! Nolan and Rich have been going to Corona del Mar beach in the late afternoons lately where they have been boogie boarding and body surfing. Well, out of the blue one afternoon last week Julian said he, too, wanted to go! Prior to this, he was pretty determined to remain put at home. So, we packed our bags and off we went. It was the most wonderful hour-and-a-half I can remember in a long while. Julian was content to play with his sand toys while Nolan and Rich rode the waves. (After a week of huge waves, the day we were there it was safe and the water was turquoise clear.) This little afternoon outing sure cured a severe case of cabin fever! Today, Julian wanted to go again. Yippie! And, in a county of 3 million people, who found us at the beach? His grandma & grandpa and cousins, who had the same inkling to escape the heat as we did and knew just where to look for us! I am just now learning how to post photos on this website, so I hope these show up:
Some other special things:Julian has been getting special handmade cards every few days in the mail from some very nice people at Send Love Today (www.sendlovetoday.org). They send encouraging cards to people being treated for brain tumors. If I had the talent and time, it would be so neat to volunteer for this group!
Today, he received in the mail a CD with a song that was written just for him. It's really good! I can't copy it because I think its protected, but there is a link if you would like to hear it: www.songsoflove.org then click on Family & Friends Song & Ringtone Dowload link (toward the bottom of the page). Type in Dunn for the child's last name and the number 19624 in the 'record number' field. The small donation helps them continue to write songs for other kids with serious illnesses.
All in all, Julian is doing about as well as he has since this began. Still not eating and still having some nausea, but he is gaining weight, happy and as sweet as ever. I think the fact that he wanted to go to the beach shows he is feeling so much better these days. He had his NG tube changed out last week (that is always a bummer). A clinic visit this Thursday (and maybe a blood transfusion), and then a few weeks until another round of chemo. Thank you all for your love and prayers!
Monday, July 20, 2009
Message from Andrea - July 20, 2009
How long does it take to pick up 771 pieces of Legos?
Posted 1 hour ago
Actually, not too long, but on a hardwood floor it is very tedious. Yes, we are home! Julian was able to leave the hospital earlier than anticipated and, although his nausea is worse than normal and he is pretty tired, he is well enough to enjoy his Legos including a new creation: a fire engine we built this weekend (the one with 771 pieces that went flying all over the place). He'll have an outpatient push of chemo this week and then a few weeks of rest. Thank you to everyone for your prayers and sweet wishes for Julian! They are making such a difference.
P.S. His eyebrows and eyelashes are now going, but he says he likes his "peachy" skin.
Posted 1 hour ago
Actually, not too long, but on a hardwood floor it is very tedious. Yes, we are home! Julian was able to leave the hospital earlier than anticipated and, although his nausea is worse than normal and he is pretty tired, he is well enough to enjoy his Legos including a new creation: a fire engine we built this weekend (the one with 771 pieces that went flying all over the place). He'll have an outpatient push of chemo this week and then a few weeks of rest. Thank you to everyone for your prayers and sweet wishes for Julian! They are making such a difference.
P.S. His eyebrows and eyelashes are now going, but he says he likes his "peachy" skin.
Wednesday, July 15, 2009
Message from Andrea - July 13, 2009
Getting ready for another round
Dear friends: our last 'break' was two weeks shorter than the others, so Julian will be going in for his next round of chemo already this Thursday, July 16. He doesn't really mind, though, he is such a little trooper. He is scheduled to be at CHOC from the 16-18, so if all goes well, he'll be home by the end of the weekend. Rich and I would really appreciate your prayers for him. The idea of these toxic chemicals going through him can be a bit scary and the effects don't always show up right away, too. But, we know God is good. When Julian came down with that infection last month he weathered it well even though the MD later said it could have been much more serious. And, his MRI showed that the site where the tumor had been has healed very, very well.
About a month ago, Julian's hair began to grow back and it came back in a shade of light brown. He had a full head of hair in early July, but then one day it all came off. So, now he is pretty much totally bald. He still has his long eyelashes and his eyebrows, though, and his big smile. He has been feeling pretty well lately and has been enjoying his 'big brudder,' Nolan. Those two have so much fun together. Hopefully, we'll be home soon so he can do more of the same!
Dear friends: our last 'break' was two weeks shorter than the others, so Julian will be going in for his next round of chemo already this Thursday, July 16. He doesn't really mind, though, he is such a little trooper. He is scheduled to be at CHOC from the 16-18, so if all goes well, he'll be home by the end of the weekend. Rich and I would really appreciate your prayers for him. The idea of these toxic chemicals going through him can be a bit scary and the effects don't always show up right away, too. But, we know God is good. When Julian came down with that infection last month he weathered it well even though the MD later said it could have been much more serious. And, his MRI showed that the site where the tumor had been has healed very, very well.
About a month ago, Julian's hair began to grow back and it came back in a shade of light brown. He had a full head of hair in early July, but then one day it all came off. So, now he is pretty much totally bald. He still has his long eyelashes and his eyebrows, though, and his big smile. He has been feeling pretty well lately and has been enjoying his 'big brudder,' Nolan. Those two have so much fun together. Hopefully, we'll be home soon so he can do more of the same!
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