Sunday, April 20, 2008
Blue Sunday
We hope it's just for the night, but Jordan felt so unwell when Dan took him up for his daily labs, that he was re-admitted to the hospital. Hemoglobin leapt up to13.0 today, a nice surprise. WBC's still at .2, which means Neupogen injections will probably resume...and so will the bone pain, the morphine, and its side effects.The on-call doc ordered another transfusion of platelets (the 29th) because they were only up to 15K despite yesterday's additions. But he got more missionary mail from Pres. and Sister Osmond, a surefire way to put a littlemore sun back into this Sunday.
Saturday, April 19, 2008
Home
Today's hemoglobin, 11.6; WBC's, .2; platelets, 9K, prompting the 28th platelet transfusion. LDH at 2,816. The counts aren't where we want them, but Jordan is, he's home!
We brought home a few surprises for the grand occasion. So far, only Shane and Bonnie have been brave enough to try the fresh green wheat grass juice. But there's more in the fridge, just waiting for the next brave sipper. What did garner some interest were the new wok and bamboo steamer we picked up while doing a little grocery shopping this afternoon. Brianna immediately set about preparing an authentic Chinese dinner for us, or as close as we could get with our Wal--Mart provisions. Jordan's absent appetite and declining weight keep us looking for tempting, nutrient- and calorie-dense foods to serve. Forget nonfat and 2%, we've gone back to whole milk for now.
We brought home a few surprises for the grand occasion. So far, only Shane and Bonnie have been brave enough to try the fresh green wheat grass juice. But there's more in the fridge, just waiting for the next brave sipper. What did garner some interest were the new wok and bamboo steamer we picked up while doing a little grocery shopping this afternoon. Brianna immediately set about preparing an authentic Chinese dinner for us, or as close as we could get with our Wal--Mart provisions. Jordan's absent appetite and declining weight keep us looking for tempting, nutrient- and calorie-dense foods to serve. Forget nonfat and 2%, we've gone back to whole milk for now.
Friday, April 18, 2008
Big Possibilities
Way back on March 17th, we contacted the NIH (National Institutes of Health) in hopes of finding a clinical trial for Jordan to participate in. It's a huge deal, so it has understandably taken a few phone calls to get to this point, but today we were told that they are interested in pursuing something that might help him. A bone marrow transplant! I think they may have been swayed upon hearing he has six brothers, at least one of whom will surely be a perfect match as a bone marrow donor. Roll up those sleeves, boys, ve vant to test your blood.
We've given the NIH coordinator Dr. Z.'s phone number, and asked him to persevere even if our doc's response is less than enthusiastic. It's taken a month for them to decide they're interested. For all we know, it may take another month before they contact Dr. Z. By that time, our mythical mind control methods will have convinced him to cooperate fully. In any event, treatment will continue here, and we will likely have a consult in Seattle with Dr. Hawkins in a few weeks.
Jordan came home for a few hours this afternoon on a hospital pass. Had it not been for spiking a fever last night, he would have been released today. After twelve long days and nights on a squeaky, automatically re-positioning, thin, hospital mattress, his own bed feels luxuriously inviting. But no bed is comfortable 24/7, so, the amazing Jordan did take himself up from his bed, and walk to the family room for pizza and a movie, followed by a small serving of peach ice cream. He was loath to return to the hospital for the night,, but if all goes well, he'll be back with us tomorrow, until it's time for the next round of wonder drugs.
This morning's CBC revealed Jordan's hemoglobin rose for the third consecutive day. On the 12th, the date of his last transfusion, it was at 7.8. Naturally, it was higher the next day, at 11.1. Then it began the all too familiar decline: 10.5, 10.2. But wait, then it commenced this encouraging climb, 11.0, 11.6, and now, 12.1. WBC's are sitting at .3. Platelets dropped from 18K to 13K. Ordinarily, a platelet transfusion would have been ordered, but the doctor wants to give it one more day to see if they'll turn around and head in the right direction.
We've given the NIH coordinator Dr. Z.'s phone number, and asked him to persevere even if our doc's response is less than enthusiastic. It's taken a month for them to decide they're interested. For all we know, it may take another month before they contact Dr. Z. By that time, our mythical mind control methods will have convinced him to cooperate fully. In any event, treatment will continue here, and we will likely have a consult in Seattle with Dr. Hawkins in a few weeks.
Jordan came home for a few hours this afternoon on a hospital pass. Had it not been for spiking a fever last night, he would have been released today. After twelve long days and nights on a squeaky, automatically re-positioning, thin, hospital mattress, his own bed feels luxuriously inviting. But no bed is comfortable 24/7, so, the amazing Jordan did take himself up from his bed, and walk to the family room for pizza and a movie, followed by a small serving of peach ice cream. He was loath to return to the hospital for the night,, but if all goes well, he'll be back with us tomorrow, until it's time for the next round of wonder drugs.
This morning's CBC revealed Jordan's hemoglobin rose for the third consecutive day. On the 12th, the date of his last transfusion, it was at 7.8. Naturally, it was higher the next day, at 11.1. Then it began the all too familiar decline: 10.5, 10.2. But wait, then it commenced this encouraging climb, 11.0, 11.6, and now, 12.1. WBC's are sitting at .3. Platelets dropped from 18K to 13K. Ordinarily, a platelet transfusion would have been ordered, but the doctor wants to give it one more day to see if they'll turn around and head in the right direction.
Wednesday, April 16, 2008
The People's Republic of China
Jordan is slooooowly beginning to feel better. His Hemoglobin increased for the second day in a row. WBC's stayed the same, .3; and the platelets dropped back to 18K. He is very tired, and unusually quiet, but he's determined to hold the role-playing game session scheduled for tonight with Brianna, Shane, Ryan, and Audra. Having a great time has always been a high priority for Jordan! And while he does it, we get to laugh right along with him.
For example, when Jordan taught English at the foreign language school in Dongguan, he and Brianna became good friends with a colleague, Alex, who hails from Great Britain. Alex recently sent a few video clips of random scenes from their outings together.
For behold, are we not all beggars? MSH, 4:19.
Jordan lends a helping hand to a Pamphlet pusher
Keeping China beautiful!
Shopping
Diplomacy
It's certainly called for on many occasions, including the one at hand. Last night, a couple of nurses were annoyed with us for insisting, to no avail, that the Atropine should be continued. We were told that it was never given with chemotherapy. This morning, the doctor wrote orders for it to begin once more, and the accompanying nurse was annoyed when Brianna mentioned the previous evening's confusion. Feeling that our own research is necessary, we've located two articles showing that the mere addition of Atropine is probably ineffective at this point. We hope these up-to-date recommendations will be implemented if the Atropine fails to improve the situation.
Today's CBC gives us reason for renewed optimism. The WBC rose to .3; platelets rose from 18K to 20K; HGB increased too. This is a very good sign. When Jordan begins to produce his own blood cells, it's a very big deal! The LDH dropped by almost two thousand points, as well.
Today's CBC gives us reason for renewed optimism. The WBC rose to .3; platelets rose from 18K to 20K; HGB increased too. This is a very good sign. When Jordan begins to produce his own blood cells, it's a very big deal! The LDH dropped by almost two thousand points, as well.
Tuesday, April 15, 2008
Dilemma
We've been given conflicting information. In an attempt to resolve it, we've emailed the Rhabdo-Kids list the following request:
Hi All,
Our Jordan's treatment has been changed from VDC + IE to Irinotecan, Temidar, and Vincristine. The new protocol started last Saturday, 4/12. He was premedicated with three anti emetics, Decadron, Ativan, and Kytril. We resisted the Kytril because it causes Jordan's heart rate to decrease to about 40 beats per minute. The nurse called the pharmacist to Jordan's room to assure us that this would not happen again, that it had only happened in the past because it was given with other closely related antiemetics. Atropine was the fourth and final drug in his premed combo. It was explained at that time, that the Atropine, usually given for cardiac issues, was to prevent diarrhea, Irinotecan's chief side effect.
Just as we feared, Jordan's heart rate dropped to 40 BPM today, and the Kytril was discontinued. The problem is that the Atropine was discontinued also, and diarrhea has begun. We are now being told that the Atropine was not given to prevent diarrhea, that it was linked with the Kytril, and that since the Kytril has been discontinued, it should be discontinued as well. Meanwhile, the diarrhea intensifies. Please fill us in on which premeds are commonly used with Irinotecan. The confusion is creating a bit of tension with one or two members of the hospital staff.
Best regards,
Bonnie, mom of Jordan
dx 1/08; mets ARMS
Jordan has been sleeping much of the day, and has experienced some dizziness. His WBC has fallen to .2, also written as 200,. We are happy to report, though, that since Sunday, he has been able to resume walking.
Thank you for your emails, comments, and prayers. They continue to bless and encourage each of us.
Hi All,
Our Jordan's treatment has been changed from VDC + IE to Irinotecan, Temidar, and Vincristine. The new protocol started last Saturday, 4/12. He was premedicated with three anti emetics, Decadron, Ativan, and Kytril. We resisted the Kytril because it causes Jordan's heart rate to decrease to about 40 beats per minute. The nurse called the pharmacist to Jordan's room to assure us that this would not happen again, that it had only happened in the past because it was given with other closely related antiemetics. Atropine was the fourth and final drug in his premed combo. It was explained at that time, that the Atropine, usually given for cardiac issues, was to prevent diarrhea, Irinotecan's chief side effect.
Just as we feared, Jordan's heart rate dropped to 40 BPM today, and the Kytril was discontinued. The problem is that the Atropine was discontinued also, and diarrhea has begun. We are now being told that the Atropine was not given to prevent diarrhea, that it was linked with the Kytril, and that since the Kytril has been discontinued, it should be discontinued as well. Meanwhile, the diarrhea intensifies. Please fill us in on which premeds are commonly used with Irinotecan. The confusion is creating a bit of tension with one or two members of the hospital staff.
Best regards,
Bonnie, mom of Jordan
dx 1/08; mets ARMS
Jordan has been sleeping much of the day, and has experienced some dizziness. His WBC has fallen to .2, also written as 200,. We are happy to report, though, that since Sunday, he has been able to resume walking.
Thank you for your emails, comments, and prayers. They continue to bless and encourage each of us.
Monday, April 14, 2008
Phone Call
The phone rings. Bonnie answers, "Hello?"
"Zubbazura Zur."
"I'm sorry. I didn't understand you."
"This is Dr. Hawkins."
"Dr. Hawkins?"
"Yes, I got your E-mail. I'm on the road now. And I'm just calling to see how Jordan is doing."
...
We're totally amazed, maybe even starstruck. How cool is that!
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