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.
Tuesday, June 23, 2009
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.
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