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
Tuesday, April 28, 2009
Thursday, April 9, 2009
HOME AGAIN - MESSAGE FROM ANDREA
Posted Apr 5, 2009 6:24pm
Just a quick update: Julian was finally discharged from CHOC on Friday, April 3rd! Our 3-day stay turned into 10. It's a good thing we were able to go home because I honestly don't think I could have kept him there one more day. He was so ready to go home and was very worried that someone might move his Legos. Fortunately, most of his Lego creations were still in the same place where he left them. We are trying to get the hang of a new feeding program and 'round the clock meds. Julian is pretty tired much of the time, but he has moments when he perks up and does a little jig or surprises us by saying something funny. He'll have 1X weekly outpatient chemo treatments until his next overnighter, May 6. Hopefully, that one will be much shorter than this one! We are praying for our new friends we met at CHOC: Adrian and (another) Julian, as well as Emily.
Just a quick update: Julian was finally discharged from CHOC on Friday, April 3rd! Our 3-day stay turned into 10. It's a good thing we were able to go home because I honestly don't think I could have kept him there one more day. He was so ready to go home and was very worried that someone might move his Legos. Fortunately, most of his Lego creations were still in the same place where he left them. We are trying to get the hang of a new feeding program and 'round the clock meds. Julian is pretty tired much of the time, but he has moments when he perks up and does a little jig or surprises us by saying something funny. He'll have 1X weekly outpatient chemo treatments until his next overnighter, May 6. Hopefully, that one will be much shorter than this one! We are praying for our new friends we met at CHOC: Adrian and (another) Julian, as well as Emily.
Monday, March 30, 2009
Message from Andrea and Julian - March 30, 2009
First, let me say thank you to everyone for your amazing support of Jammin' for Julian! It was a wonderful day of beautiful music made by the most darling children and teens. I am still so inspired by it and by the love that was demonstrated by everyone. We will never forget it.
Julian has handled this week's chemotherapy well. He did get sick, but they have a great drug, Zofran, which minimized the nausea. He has been mostly tired and a bit depressed because he really wants to go home. Originally, we thought this would be a 3-day visit, but we are now in day 6. He doesn't want to get out of bed or visit the playroom, either. The main thing is that they want to address his eating problems. He will have an endoscopy done today to look inside his stomache and small intestine, and then an NG tube placed into his nose so food can go into his stomach. He won't like that very much, but it has to be done. Right now, he has no desire or interest in eating and has had no solid foods for months. So, we're hoping his system will get used to food again.
Well, that's the latest from room 392!
Love,Andrea and Julian
Julian has handled this week's chemotherapy well. He did get sick, but they have a great drug, Zofran, which minimized the nausea. He has been mostly tired and a bit depressed because he really wants to go home. Originally, we thought this would be a 3-day visit, but we are now in day 6. He doesn't want to get out of bed or visit the playroom, either. The main thing is that they want to address his eating problems. He will have an endoscopy done today to look inside his stomache and small intestine, and then an NG tube placed into his nose so food can go into his stomach. He won't like that very much, but it has to be done. Right now, he has no desire or interest in eating and has had no solid foods for months. So, we're hoping his system will get used to food again.
Well, that's the latest from room 392!
Love,Andrea and Julian
Friday, March 20, 2009
Message from Andrea - March 20, 2009
God is so merciful. Yesterday we received wonderful news from our doctor that Julian's MRI this week came back clear! This means there was no evidence of any new cancer growth in his brain or spine. Dr. Shen wants to do a lumbar puncture next week just to be certain. We are very thankful for this encouraging news.
We are finishing up our 'break' from treatment and next week Julian starts round 2 of chemo. He'll be in the hospital for three days and will get an NG tube during that time (a feeding tube that goes through his nose into his stomache) so he can start 'eating' again. Until now, he is on IV nutrition and still as thin as a rail. We are praying that his appetite will return, but at least his stomache and intestines will be able to work again and hopefully he'll gain some weight(although I'm sure Julian will not be a happy camper about having a tube in his nose). The chemo can impact his kidneys and hearing, and will make him feel pretty sick, so we would appreciate your prayers about all of these things.
Tomorrow is the "Jammin' for Julian" children's concert and we are so excited! We hope to see you there and for those who can't attend, you can hear it via the internet on www.kociradio.com. The concert begins at 2:30 p.m.
Thank you for your continued prayers and support! Also, please keep a little girl named Emily in your prayers.
We are finishing up our 'break' from treatment and next week Julian starts round 2 of chemo. He'll be in the hospital for three days and will get an NG tube during that time (a feeding tube that goes through his nose into his stomache) so he can start 'eating' again. Until now, he is on IV nutrition and still as thin as a rail. We are praying that his appetite will return, but at least his stomache and intestines will be able to work again and hopefully he'll gain some weight(although I'm sure Julian will not be a happy camper about having a tube in his nose). The chemo can impact his kidneys and hearing, and will make him feel pretty sick, so we would appreciate your prayers about all of these things.
Tomorrow is the "Jammin' for Julian" children's concert and we are so excited! We hope to see you there and for those who can't attend, you can hear it via the internet on www.kociradio.com. The concert begins at 2:30 p.m.
Thank you for your continued prayers and support! Also, please keep a little girl named Emily in your prayers.
Tuesday, March 10, 2009
REMINDER - JAMMIN' FOR JULIAN - MARCH 21ST
An Open Children’s Pop Concert & Expo
When: Saturday, March 21, 2009
NEW TIME: 2:30 P.M. (Doors open at 2 p.m.)
Where: Newport Mesa Church
sanctuary, 2599 Newport Blvd., Costa Mesa
What: An open children’s pop concert and expo (suggested performers from preschool to 6th grade). KOCI FM 101.5 will broadcast the event live on radio and the Internet. All proceeds will benefit the Julian Dunn Cancer Fund for 5-year-old Julian who is being treated for a brain tumor.
Event contact: Richard Dunn, (949) 433-0639 or dunnwriter@yahoo.com.
Suggested donation: $15 per person, or a maximum of $60 per family. No charge for performers.
NOTE: REGISTRATION FOR PERFORMERS IS CLOSED
http://www.jamminforjulian.org/
When: Saturday, March 21, 2009
NEW TIME: 2:30 P.M. (Doors open at 2 p.m.)
Where: Newport Mesa Church
sanctuary, 2599 Newport Blvd., Costa Mesa
What: An open children’s pop concert and expo (suggested performers from preschool to 6th grade). KOCI FM 101.5 will broadcast the event live on radio and the Internet. All proceeds will benefit the Julian Dunn Cancer Fund for 5-year-old Julian who is being treated for a brain tumor.
Event contact: Richard Dunn, (949) 433-0639 or dunnwriter@yahoo.com.
Suggested donation: $15 per person, or a maximum of $60 per family. No charge for performers.
NOTE: REGISTRATION FOR PERFORMERS IS CLOSED
http://www.jamminforjulian.org/
Thursday, February 19, 2009
Message from Andrea - February 18, 2009
Feb. 18 -- Finished with radiation
Julian finished his 6-week course of radiation today and we get a 4-week break from 'everything.' He still needs to go to CHOC once per week for check-ups, etc., but the daily visits to the radiation dept. are finished. It feels good to have this portion of his treatment finished. Only 49 weeks to go!
He also finished his first series of chemotherapy today. The next cycle will start in a month. We now hope and pray that his appetite will begin returning. He is on 24-hour IV nutrition and only drinks water and milk. The effects of radiation will stay with him another two weeks or so, but we hope to see some positive changes in his appetite after that. We would appreciate your prayers for that!
Julian is in good spirits. He has enjoyed bringing a new 'friend' to CHOC every day (from among his collection of furry friends) and making sure that everyone met his friend of the day (everyone from the parking lot attendant to the anesthesiologist). Today, being his last day of radiation, his room in the Short Stay Unit was totally decorated with hearts and he was able to take home the toys that, each morning for a month, had been sitting on his bed for him to play with. (Photos to be posted soon!)
Julian finished his 6-week course of radiation today and we get a 4-week break from 'everything.' He still needs to go to CHOC once per week for check-ups, etc., but the daily visits to the radiation dept. are finished. It feels good to have this portion of his treatment finished. Only 49 weeks to go!
He also finished his first series of chemotherapy today. The next cycle will start in a month. We now hope and pray that his appetite will begin returning. He is on 24-hour IV nutrition and only drinks water and milk. The effects of radiation will stay with him another two weeks or so, but we hope to see some positive changes in his appetite after that. We would appreciate your prayers for that!
Julian is in good spirits. He has enjoyed bringing a new 'friend' to CHOC every day (from among his collection of furry friends) and making sure that everyone met his friend of the day (everyone from the parking lot attendant to the anesthesiologist). Today, being his last day of radiation, his room in the Short Stay Unit was totally decorated with hearts and he was able to take home the toys that, each morning for a month, had been sitting on his bed for him to play with. (Photos to be posted soon!)
Wednesday, February 11, 2009
Message from Andrea - February 10, 2009
We are now in the final stretch of radiation treatments, with Julian's last day being Feb. 18. After that, we have four weeks "off" and then begin a new round of chemotherapy. Julian is feeling much better now than initially. He is not as nauseated and not quite as tired, although he does rest most of the day. He is more interested in playing with toys now and started coloring pictures again a little bit recently. Unfortunately, he still does not want to eat any food and is on round-the-clock IV nutrition. I am hopeful that, once the radiation stops, his appetite will begin to return. He has also lost much of his hair, except for light blond fuzz (and his eyelashes and eyebrows). He is a sweetheart and keeps smiling and blowing kisses despite it all.
You may have already heard of "Jammin' for Julian," a March 21 children's concert where area children (Preschool age through 6th grade) will be performing. This is Rich's brainchild and we have been getting lots of encouragement about it from friends throughout the community. Here is a link to more information:
http://www.dailypilot.com/articles/2009/01/22/topstory/dpt-jamminforjulian012209.txt
We also have this website: www.jamminforjulian.org
Besides Jammin' for Julian, I'm glad to report there hasn't been any major news lately (except for the continued goodness of people and their prayers!)
Love,Andrea
You may have already heard of "Jammin' for Julian," a March 21 children's concert where area children (Preschool age through 6th grade) will be performing. This is Rich's brainchild and we have been getting lots of encouragement about it from friends throughout the community. Here is a link to more information:
http://www.dailypilot.com/articles/2009/01/22/topstory/dpt-jamminforjulian012209.txt
We also have this website: www.jamminforjulian.org
Besides Jammin' for Julian, I'm glad to report there hasn't been any major news lately (except for the continued goodness of people and their prayers!)
Love,Andrea
Subscribe to:
Posts (Atom)
