“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.)
Wednesday, September 16, 2009
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!!
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