Posted Dec 24, 2009 5:48pm
Dear Friends,
It's the night before Christmas (afternoon, actually) and there are creatures stirring all through the house (an 8-year-old and a 6 year-old). There is anticipation for tomorrow morning and, 'though the boys believe in Santa, they understand that Santa gives gifts to celebrate the greatest gift of all, one that God gave the world and that the best gift we can ever give back to Him is our heart, fully.
This has been a special season. Julian is home, and for that we are immensely grateful. We have been able to experience some very special holiday moments, ones we will never forget, and we have been blessed by the kindness of others.
Julian is weathering last weekend's chemo well, a bit nauseated at times, but much better than the previous chemo cycle. Since about three weeks ago, he has been nibbling on solid food, not enough to replace his formula and NG tube, but certainly a great start. He no longer needs his IV nutrition which is very nice not to have to prepare each night! Overall, I think he is feeling good; tired due to the chemo, but generally good. Has multiple follow-up appointments in the next weeks and a chemo push on Monday.
Asking for prayers for the next and final round of chemo set for Jan. 15. This will be with cisplatin which is quite harsh on his system and is responsible for his continuing hearing loss. We have the option of having cisplatin given at 50% to help spare some of the damage to his hearing, but it is a difficult decision because we don't want to do anything that could create an opportunity for a future relapse. So, we need lots of wisdom. But glad it's the last cycle!!!!
Christmas is about love, the greatest gift of all. May the world embrace Christ's message of love. Merry Christmas to all!
Monday, December 28, 2009
Monday, December 7, 2009
12 Months Ago Today
Posted 2 days ago
This week has been significant for us because exactly 12 months ago today was when Julian had his MRI and we learned of his brain tumor. We had planned to go to the mountains for the weekend, but Rich insisted we get an MRI or he was going to take Julian to the ER. And thankfully he was so insistent.
By now in the evening, Julian was already in his bed in the CHOC PICU, bewildered and wondering why we couldn't go home. While the nurses made him comfortable, a world of questions and fears was swirling in our heads and the strange sensation that this couldn't really be happening. The next morning he had his surgery and began the rest of his new life.
But God has been faithful and has brought us through this year in so many ways. The year sort of culminated into last Wednesday when we took the boys to a local Christmas event that we have attended for the past three years. We had been hoping Julian would be well enough to go again this year and when the day came he was better than expected: animated and fun. He isn't at all self-conscious, and he happily wore a snowman-type Santa hat that had two dangling snowpuffs. The boys brought their wish lists to Santa, decorated cookies and made crafts, just like they have in the past. Although this year he attended the event bald and with a tube taped to his face, we saw our delightful little boy thoroughly enjoy himself and it was the best gift we could hope for.
We have since fully embraced the Christmas season; we've bought and decorated our Christmas tree, put lights up on the house, polished off a box of Duraflame logs, and made a gingerbread house. All we need now is some snow! So we went to CVS and bought some (yes, that's how we 'experience' winter in Southern California).
We're going to enjoy every day knowing Julian will go for another round of chemo on Dec. 18. He'll be spending two nights at the hospital and we so hope he'll be feeling OK on Christmas Day. He won't be receiving the Cisplatin drug this time (the one that is damaging his hearing), but instead it will be given to him in January and the drugs originally planned for January will be given to him this month. We hope that this will slow or stop the damage to his hearing and maybe even provide some recovery, although he is still going to need hearing aids. The most recent audiogram confirmed continued hearing loss.
On a more positive note, Julian's stomach is doing much better as of last weekend; he has hardly thrown up and is able to take in more of his NG feeds than ever. We'll probably be able to give up his TPN (IV) nutrition soon.
Well, just wanted to share some musings from our world and hoping that your Christmas season is off to a blessed start, as well.
This week has been significant for us because exactly 12 months ago today was when Julian had his MRI and we learned of his brain tumor. We had planned to go to the mountains for the weekend, but Rich insisted we get an MRI or he was going to take Julian to the ER. And thankfully he was so insistent.
By now in the evening, Julian was already in his bed in the CHOC PICU, bewildered and wondering why we couldn't go home. While the nurses made him comfortable, a world of questions and fears was swirling in our heads and the strange sensation that this couldn't really be happening. The next morning he had his surgery and began the rest of his new life.
But God has been faithful and has brought us through this year in so many ways. The year sort of culminated into last Wednesday when we took the boys to a local Christmas event that we have attended for the past three years. We had been hoping Julian would be well enough to go again this year and when the day came he was better than expected: animated and fun. He isn't at all self-conscious, and he happily wore a snowman-type Santa hat that had two dangling snowpuffs. The boys brought their wish lists to Santa, decorated cookies and made crafts, just like they have in the past. Although this year he attended the event bald and with a tube taped to his face, we saw our delightful little boy thoroughly enjoy himself and it was the best gift we could hope for.
We have since fully embraced the Christmas season; we've bought and decorated our Christmas tree, put lights up on the house, polished off a box of Duraflame logs, and made a gingerbread house. All we need now is some snow! So we went to CVS and bought some (yes, that's how we 'experience' winter in Southern California).
We're going to enjoy every day knowing Julian will go for another round of chemo on Dec. 18. He'll be spending two nights at the hospital and we so hope he'll be feeling OK on Christmas Day. He won't be receiving the Cisplatin drug this time (the one that is damaging his hearing), but instead it will be given to him in January and the drugs originally planned for January will be given to him this month. We hope that this will slow or stop the damage to his hearing and maybe even provide some recovery, although he is still going to need hearing aids. The most recent audiogram confirmed continued hearing loss.
On a more positive note, Julian's stomach is doing much better as of last weekend; he has hardly thrown up and is able to take in more of his NG feeds than ever. We'll probably be able to give up his TPN (IV) nutrition soon.
Well, just wanted to share some musings from our world and hoping that your Christmas season is off to a blessed start, as well.
Subscribe to:
Posts (Atom)
