Saturday, October 16, 2010
10:06 am...second antibody course started..please pray
They just started infusing antibody...next 1/2 hour will be telling on how Lisa will handle this...please pray for strength and comfort
Friday, October 15, 2010
THIS is the St Jude everyone raves about
All of Lisa's scans and test have come back showing her disease has not gotten worse which is great news. It also means we can continue with antibody round 2. Given all the pain Lisa was having, the doctor actually seemed a bit surprised that Lisa's disease remains stable; the last patient to go thru this dosage of antibody had progression of disease so he was dropped from study.
Lisa continues to have pain specifically in her hands an feet. Having an extra week has helped and she is doing better and even managed to be pleasant for a good part of the week, but the pain is still there. It is with much apprehension that we enter round two of this antibody. Neither the doctor nor the neurologist we saw for pain could say whether this next dose would be as bad as round 1 or if the nerves were already so frazzled that the pain would be less. They also could not guarantee that it would not cause long-term nerve damage. Based on prior patients, the doctor "thinks" that the symptoms should be less this time. Becasue Lisa has shown improvement this week, she also "thinks" that there won't be long-term nerve damage...but there are no guarantees.
Lisa is the first patient at this dose level to have the amount of pain she did for the length of time she did; because of this, six more slots will be added to study using this antibody level to document other patients' reactions.
So, after spending a week milling around Memphis, we were admitted as inpatients tonight in preparation for the antibody tomorrow morning. Finally, I have found the St Judes everyone raves about. We are in their new building and on the floor where bone marrow transplant is done. It is NICE. All the patient rooms are single rooms with their own bathrooms. They have the normal hospital bed, tv with dvd along with PLEASANT staff, big windows, a couch bed, lazy boy chair, built in cabinets and a door that leads right into a parents room. The parents room has its own couch bed (they offered to move a FULL size futon in if I chose), lazy boy chair, table, side table, built in closet, computer desk, tv with working remote and dvd player AND its own bathroom including shower. It's heaven! I know, easy to please! I really hope Motts new hospital includes these type of accomodations. You would think that they took the best of the best when building the new hospital and the features here at St Jude's building are very nice and make a hard situation much easier...THIS is the St Jude everyone raves about!
Please send up a few extra prayers the next few days that Lisa's pain in manageable and that she is able to stay strong and continue forward.
Lisa continues to have pain specifically in her hands an feet. Having an extra week has helped and she is doing better and even managed to be pleasant for a good part of the week, but the pain is still there. It is with much apprehension that we enter round two of this antibody. Neither the doctor nor the neurologist we saw for pain could say whether this next dose would be as bad as round 1 or if the nerves were already so frazzled that the pain would be less. They also could not guarantee that it would not cause long-term nerve damage. Based on prior patients, the doctor "thinks" that the symptoms should be less this time. Becasue Lisa has shown improvement this week, she also "thinks" that there won't be long-term nerve damage...but there are no guarantees.
Lisa is the first patient at this dose level to have the amount of pain she did for the length of time she did; because of this, six more slots will be added to study using this antibody level to document other patients' reactions.
So, after spending a week milling around Memphis, we were admitted as inpatients tonight in preparation for the antibody tomorrow morning. Finally, I have found the St Judes everyone raves about. We are in their new building and on the floor where bone marrow transplant is done. It is NICE. All the patient rooms are single rooms with their own bathrooms. They have the normal hospital bed, tv with dvd along with PLEASANT staff, big windows, a couch bed, lazy boy chair, built in cabinets and a door that leads right into a parents room. The parents room has its own couch bed (they offered to move a FULL size futon in if I chose), lazy boy chair, table, side table, built in closet, computer desk, tv with working remote and dvd player AND its own bathroom including shower. It's heaven! I know, easy to please! I really hope Motts new hospital includes these type of accomodations. You would think that they took the best of the best when building the new hospital and the features here at St Jude's building are very nice and make a hard situation much easier...THIS is the St Jude everyone raves about!
Please send up a few extra prayers the next few days that Lisa's pain in manageable and that she is able to stay strong and continue forward.
Tuesday, October 12, 2010
Fun in Memphis
Well...thanks to Aunt Julie and cousins Mitch and Alyssa we survived the weekend and had LOTS of fun. Lisa did really well on Saturday and required no pain meds at all, she even ate 3 meals. Her cousins kept her busy and laughing and it was wonderful to see her feeling so well. The doctor had asked that I try to get her off the pain killers and this was a great first step.
Sunday she did pretty good, but started to fade towards the evening. That night she was pretty agitated and required pain meds twice. Monday she was a bit groggy and was doing fine until her physical therapy appt. She was not cooperative at all. We even tried to have Mitchell and Alyssa coerce her into participating, but it was a no go. Once the therapy session was over, Aunt Julie and the kids headed home and Lisa took her pain meds and slept for 4 hours. She was feeling better afterwards and we took a shuttle ride to Walgreens for some items.
Today, I caved and gave her her pain killer at 10:30 in the morning. She was miserable and after the one clinic told us we had to reschedule our appt because we signed in 10 mins. late (yah, like we don't sit around waiting on them all the time!) I couldn't take any more aggravation. I gave her the meds. They kicked in and she was FINALLY in good spirits and cooperative with the head doctor here. The doctor was so pleased she said that if Lisa looks this good on Thursday we will most likely go ahead with the antibody on Saturday. I made sure to tell her that it was drug induced happiness and she seemed to be okay with that. The thinking is that Lisa's nerves are already on alert so the second antibody shouldn't be as shocking to her system. There still is some concern about her bowels....even though she has been taking laxatives the last 4 days, nothing has "happened" down there since we got to St Jude over a week ago. So far she isn't having any symptoms, but they are still keep an eye out for a bowel obstruction.
Sunday she did pretty good, but started to fade towards the evening. That night she was pretty agitated and required pain meds twice. Monday she was a bit groggy and was doing fine until her physical therapy appt. She was not cooperative at all. We even tried to have Mitchell and Alyssa coerce her into participating, but it was a no go. Once the therapy session was over, Aunt Julie and the kids headed home and Lisa took her pain meds and slept for 4 hours. She was feeling better afterwards and we took a shuttle ride to Walgreens for some items.
Today, I caved and gave her her pain killer at 10:30 in the morning. She was miserable and after the one clinic told us we had to reschedule our appt because we signed in 10 mins. late (yah, like we don't sit around waiting on them all the time!) I couldn't take any more aggravation. I gave her the meds. They kicked in and she was FINALLY in good spirits and cooperative with the head doctor here. The doctor was so pleased she said that if Lisa looks this good on Thursday we will most likely go ahead with the antibody on Saturday. I made sure to tell her that it was drug induced happiness and she seemed to be okay with that. The thinking is that Lisa's nerves are already on alert so the second antibody shouldn't be as shocking to her system. There still is some concern about her bowels....even though she has been taking laxatives the last 4 days, nothing has "happened" down there since we got to St Jude over a week ago. So far she isn't having any symptoms, but they are still keep an eye out for a bowel obstruction.
Holding my breath and saying lots of prayers that this is all worth it and she will bounce back!
Here's a little video we put together of our adventures in Memphis this weekend.
Friday, October 8, 2010
St Jude...be here a little longer...possibly
It's been a bit of a trying week. Lisa has been hit and miss with her moods, generally most of her meanness is directed at the doctor, poor woman. Lisa is really trying and even told of the few of the workers they are her friends which is wonderful to see, however, by the time she sees the doctor she's usually tired and uncooperative. Not sure why, but it could be the long wait for the doctor and the timing of the appt which is usually at the end of a pretty full day of tests.
I had a few anxious moments this week with test results, but so far everything has come back as stable disease. There was some concern about the cat scan because Lisa's bowel is dilated...surgeons were cconsulted and because she is asymptomatic, they feel that at this time there is nothing to be concerned about. They have given me a list of symptoms to look out for which would indicate that she has an obstruction in her bowel. Her MIBG scan showed something questionable on back part of her left leg, so they rescanned her legs today. Radiology doctor who read the scans concluded that it is not neuroblastoma again supporting the finding that she has stable disease.
Her doctor here is worried about her gait and difficulty walking. The doctor has scheduled an MRI of the spine and brain for next Wed. We are holding off on antibody until MRI is done and hoping that the extra time will get Lisa back to full strength and sleeping, walking and pain free before starting second round of antibody.
This means we get the weekend off from appts, but we will still be here at St Jude. Thankfully, my sister-in-law Julie, who lives in Alabama, had already planned to come visit with her kids and keep us company for a few days. While they won't be able to help us in ICU, they should be the perfect antidote for Lisa's aches and pains and hopefully get her feeling better. She is so excited to see her cousins Mitchell and Alyssa. We're hoping to finally make it to the zoo! Although with it still being in the 90s, I'm not sure what animals will be out.
If MRI does not show anything concerning and we proceed with the next round of antibody we will be tacking on some extra days to our visit here. Original return date was Oct 15...if we do the study, we most likely won't be returning home until. after Oct 19.
On another note, we would like to thank everyone who participated in the auction for the Michigan vs Michigan state tickets. The winner of the auction was Ryan Tobin with a final bid of $310. The money has been given to C.S. Mott Children’s Hospital/University of Michigan. Congratulations Ryan...you better be cheering for the Wolverines!!! GO BLUE!
I had a few anxious moments this week with test results, but so far everything has come back as stable disease. There was some concern about the cat scan because Lisa's bowel is dilated...surgeons were cconsulted and because she is asymptomatic, they feel that at this time there is nothing to be concerned about. They have given me a list of symptoms to look out for which would indicate that she has an obstruction in her bowel. Her MIBG scan showed something questionable on back part of her left leg, so they rescanned her legs today. Radiology doctor who read the scans concluded that it is not neuroblastoma again supporting the finding that she has stable disease.
Her doctor here is worried about her gait and difficulty walking. The doctor has scheduled an MRI of the spine and brain for next Wed. We are holding off on antibody until MRI is done and hoping that the extra time will get Lisa back to full strength and sleeping, walking and pain free before starting second round of antibody.
This means we get the weekend off from appts, but we will still be here at St Jude. Thankfully, my sister-in-law Julie, who lives in Alabama, had already planned to come visit with her kids and keep us company for a few days. While they won't be able to help us in ICU, they should be the perfect antidote for Lisa's aches and pains and hopefully get her feeling better. She is so excited to see her cousins Mitchell and Alyssa. We're hoping to finally make it to the zoo! Although with it still being in the 90s, I'm not sure what animals will be out.
If MRI does not show anything concerning and we proceed with the next round of antibody we will be tacking on some extra days to our visit here. Original return date was Oct 15...if we do the study, we most likely won't be returning home until. after Oct 19.
On another note, we would like to thank everyone who participated in the auction for the Michigan vs Michigan state tickets. The winner of the auction was Ryan Tobin with a final bid of $310. The money has been given to C.S. Mott Children’s Hospital/University of Michigan. Congratulations Ryan...you better be cheering for the Wolverines!!! GO BLUE!
Tuesday, October 5, 2010
Back at St Jude
Well, we flew back to Memphis today. Things went off without a hitch until we tried checking into the Grizzly Hotel at St Jude. They were overbooked so they sent us off campus to the Crowne Plaza. It's still all paid for by St Jude and they provide a shuttle, it's just very inconvenient getting back and forth, it's not very kid friendly, the beds are lumpy, the room not so clean, it's noisy and you it smells a bit funny (could be the exhaust from the freeway). But we'll make do.
We also had some difficulty getting a prescription filled which kept us hanging around campus for an extra hour. Waiting in the pharmacy we met another family whose little boy is in remission from neuroblastoma. He's younger than Lisa and was eligible to receive both MIBG and antibody treatment as part of his initial protocol. The mother did say he had some residual pain from his antibody treatment, but nothing as long as what Lisa has experienced. We have scans tomorrow and Thursday and don't meet with the doctor until Friday; it will be interesting to hear what she has to say about Lisa's pain.
Surprisingly, once we got to the hospital, Lisa perked up. She was actually "hopping" on some circles and counting them while we waited for the prescription. Not sure if it was the visit from Grandma this afternoon, the hospital air, or all the prayers being offered up but it was a wonderful change of pace and we had a very enjoyable evening which we finished up with eating pizza in bed!
Keep praying, keep hoping, keep believing!
We also had some difficulty getting a prescription filled which kept us hanging around campus for an extra hour. Waiting in the pharmacy we met another family whose little boy is in remission from neuroblastoma. He's younger than Lisa and was eligible to receive both MIBG and antibody treatment as part of his initial protocol. The mother did say he had some residual pain from his antibody treatment, but nothing as long as what Lisa has experienced. We have scans tomorrow and Thursday and don't meet with the doctor until Friday; it will be interesting to hear what she has to say about Lisa's pain.
Surprisingly, once we got to the hospital, Lisa perked up. She was actually "hopping" on some circles and counting them while we waited for the prescription. Not sure if it was the visit from Grandma this afternoon, the hospital air, or all the prayers being offered up but it was a wonderful change of pace and we had a very enjoyable evening which we finished up with eating pizza in bed!
Keep praying, keep hoping, keep believing!
Friday, October 1, 2010
Online Auction---Bid on Michigan vs Michigan State tickets
Lisa continues to be the trooper. She went to school today and went home with Ms. Lisa after...as usual, she ate a big lunch with her buddy (Ms. Lisa must have a secret recipe for mac and cheese!) and they played and enjoyed each other's company. She still is taking pretty long naps in the afternoon and is frequently experiencing pain in her legs and hands. Her doctors at Motts are pretty convinced it is from nerve pain which is a side-effect of the antibody she received. She is scheduled for scans starting Wed at St Jude and these should let us know if the cancer is stable or growing. We are giving her pain meds on a regular schedule to make her more comfortable and help her sleep thru the night.
In our efforts to do something we have control over, something positive, we are having an online auction!!! Up for bid are 2 Tickets in Section 37, Row 75, Seats 1 & 2 to the BIG GAME in Ann Arbor, MI on October 9, 2010 between University of Michigan Wolverines and Michigan State Spartans. These are GREAT seats in the end-zone. Included in the auction is an autographed football signed by University of Michigan football stars Brian Griese, Charles Woodson and Steve Hutchinson.
To bid, click here. (You will need to login with your facebook account or setup a free GiftBerry account to take part in the auction.). The highest bid wins and the funds will be donated to C.S. Mott Children's Hospital for research relating to neuroblastoma, a pediatric cancer of the central nervous system.
Be sure to pass on the link for the auction to any family or friends you think may be interested.
Thanks!
In our efforts to do something we have control over, something positive, we are having an online auction!!! Up for bid are 2 Tickets in Section 37, Row 75, Seats 1 & 2 to the BIG GAME in Ann Arbor, MI on October 9, 2010 between University of Michigan Wolverines and Michigan State Spartans. These are GREAT seats in the end-zone. Included in the auction is an autographed football signed by University of Michigan football stars Brian Griese, Charles Woodson and Steve Hutchinson.
To bid, click here. (You will need to login with your facebook account or setup a free GiftBerry account to take part in the auction.). The highest bid wins and the funds will be donated to C.S. Mott Children's Hospital for research relating to neuroblastoma, a pediatric cancer of the central nervous system.
Be sure to pass on the link for the auction to any family or friends you think may be interested.
Thanks!
Thursday, September 30, 2010
Perhaps a Sign
This was on the CBS Evening News tonight....it's the same antibody Lisa is getting, they appear to have a few other drugs mixed in and are using it for newly diagnosed neuroblastoma patients.
Treating Neuroblastoma - CBS.com
You can read a similar article at http://www.sys-con.com/node/1552341 Perhaps this is a sign from God I've been looking for that we should continue with this treatment...good timing don't ya think!
Lisa had her official first whole day of school today...she made it for the entire 4.5 hours of kindergarten. We did set up a little rest area with a bean bag chair, blanket and mp3 player. The teacher said Lisa went there once, rested for a little while and then popped back up and went to the math table. When they went out for recess, the teacher asked her if she wanted to sit and play with sidewalk chalk. Lisa said no and with her gimpy little gait headed off towards the playground structure!! You go girl!
Treating Neuroblastoma - CBS.com
You can read a similar article at http://www.sys-con.com/node/1552341 Perhaps this is a sign from God I've been looking for that we should continue with this treatment...good timing don't ya think!
Lisa had her official first whole day of school today...she made it for the entire 4.5 hours of kindergarten. We did set up a little rest area with a bean bag chair, blanket and mp3 player. The teacher said Lisa went there once, rested for a little while and then popped back up and went to the math table. When they went out for recess, the teacher asked her if she wanted to sit and play with sidewalk chalk. Lisa said no and with her gimpy little gait headed off towards the playground structure!! You go girl!
Subscribe to:
Posts (Atom)
