Lisa has been doing remarkably well this week. She has been to school every day. Docs assume she may be doing so much better this time because her body is getting used to antibody...I think it's the painkillers.
We left the hospital after the first antibody treatment with no pain control. This time we were wise....she takes pain meds every 4-6 hours and we are able to keep her comfortable and functioning.
I just finished reading my emails and realized we are already due back to St Jude the week after next...man, time flies.
Friday, October 29, 2010
Monday, October 25, 2010
A new week...at home;)
Yeah...we are home, again. We got home Friday at around 5:30 and then proceeded to go North to visit Mike's mom. Lisa was so excited about seeing Grandma Mac. We had a nice time just hanging out and Lisa's pain seems to be less this second round of antibody. She is only taking pain killers 2-3x's a day and is up and about and playing...yeah!
She'll have appts at U of M twice a week until we go back down to St Jude's. If her scans continue to show her disease is stable she will be eligible for two more rounds of antibody. No real way of knowing if this treatment is working or how much time we are buying her, but if she is able to bounce back and not continue to have pain, we are willing to continue the treatment.
Lisa has looked so good the last two days that the plan is to send her to school tomorrow. Of course, when she heard this, she said she couldn't go because it would hurt her neck! They learn fast, don't they!
Glad to be home!!
She'll have appts at U of M twice a week until we go back down to St Jude's. If her scans continue to show her disease is stable she will be eligible for two more rounds of antibody. No real way of knowing if this treatment is working or how much time we are buying her, but if she is able to bounce back and not continue to have pain, we are willing to continue the treatment.
Lisa has looked so good the last two days that the plan is to send her to school tomorrow. Of course, when she heard this, she said she couldn't go because it would hurt her neck! They learn fast, don't they!
Glad to be home!!
Wednesday, October 20, 2010
Course 2, Day 4 much smoother....and this course is complete
Course 2 Day 4 went very smoothly. Lisa was very restful and calm when it was started. Have no idea if it was from all the meds in her system the day before, because it was later in the day when we started, if it was the change in pain killer or skipping the premed antivan, but I was very happy that she was feeling little pain. We sailed past the 15 minute and 30 minute marks with no problems and at the two hour mark she asked to do a craft. What an incredible change from one day to the next. She breezed thru all four hours getting pain meds when needed and sleeping on and off. It would be nice to know what the magic formula is but it continues to change which each dose which is what makes this so hard to do.
Last night went pretty smoothly and we were able to keep her pain under control. She did throw up once, but after that was fine. She slept pretty well and did not even wake to the crazy fire alarm that went off at 6:30 am for a drill. The staff is soooooooo lucky they were all behind the fire safe doors and I was exhausted because I'm not quite sure what I would have done to someone if I had got my hands on them;)
We are waiting to be released from inpatient. For some unknown reason, Lisa's platelets fell and she needs to have a transfusion before they will sign us out. From here it's back to the Grizzly house for the night, a day of rest tomorrow and then labs on Friday. If everything goes well we will hopefully be flying out Friday.....keeping fingers, legs, toes and eyes crossed that we can get out on Friday and don't have to wait for a flight on Saturday.
Next steps will be to follow up with more labs on Monday with docs at home and determine if we will be doing this again for course 3 in a few weeks.
 |
| Lisa just stared at me as I did the "we made it past 2 hours happy dance" |
Last night went pretty smoothly and we were able to keep her pain under control. She did throw up once, but after that was fine. She slept pretty well and did not even wake to the crazy fire alarm that went off at 6:30 am for a drill. The staff is soooooooo lucky they were all behind the fire safe doors and I was exhausted because I'm not quite sure what I would have done to someone if I had got my hands on them;)
We are waiting to be released from inpatient. For some unknown reason, Lisa's platelets fell and she needs to have a transfusion before they will sign us out. From here it's back to the Grizzly house for the night, a day of rest tomorrow and then labs on Friday. If everything goes well we will hopefully be flying out Friday.....keeping fingers, legs, toes and eyes crossed that we can get out on Friday and don't have to wait for a flight on Saturday.
Next steps will be to follow up with more labs on Monday with docs at home and determine if we will be doing this again for course 3 in a few weeks.
Monday, October 18, 2010
Course 2, day 3---long day...should we continue
Lisa's various reactions to the meds and the treatment she is receiving kept me up last night as I researched and questioned whether we are doing the right thing. She is in so much discomfort and basically living her days in a sedated world that I'm having a hard time reconciling this with giving her a good quality of life. I had made up my mind to ask doc today if they could cut antibody dose back this morning because perhaps it is just too toxic for Lisa.
Why I toyed with how to phrase the question, one of the docs came in this morning a proposed a more structured way to administer the pain drugs with the hope of keeping Lisa more comfortable thru the day. I agreed as my mind did the tug of war of the benefits of continuing vs giving up. If we can control her pain then giving her the antibody makes sense because it could give her a longer life, on the flip side, her quality of life is being compromised and so far she has already given up 6 weeks of life to this study. Also, the effectiveness of the antibody is not known yet. I have gotten different statistics from different people re: how much time this buys kids. One person reported his daughter did well with this antibody over one year ago, another person reported that she knew that 6 of the first 12 patients in this study passed away within 18 mos of completing it.
I agreed with the doctor to continue and give it one more shot with the hopes Lisa would sail thru the day. In my mind I told myself I would not allow them to give her the antibody until she was not sedated and sleeping. We began premeds at 9:30. After giving her tylenol, 2 antihistamines, anti-anxiety and morphine, Lisa was still wide eyed and agitated. The nurse honored my decision not to continue with the antibody until we had Lisa sleeping. We gave her a second dose of morphine...still nothing...except she got a bit more agitated and insisted she wanted to get out of bed and eat. She tried getting out of bed but could barely stand up with all the meds in her...somehow she managed to grab her box of cocoa puffs from the table next to her bed and start eating. Really? The girl is supposed hopped up on pain meds and she wants to eat? After she finished with this distraction she kept asking for an owl I promised to get her from the gift shop once she went to sleep. She would close her eyes for 5 minutes and then open them and tell me she had gone to sleep and wanted her owl. We continued this game until about 1:00 when her regular doctor came to check on her. We discussed our options and she decided the next best thing to do would be to change Lisa's pain med, to see if we could get a better response than with the morphine. Lisa was highly agitated at this time and the doctor and I agreed that we before starting up again, we should take a little break and give the drugs a chance to wear off. I took Lisa her for a walk outside in her wheelchair and we went to the gift shop to get the owl. I was certain the fresh air and sunshine would knock her out. Hahahahahahahahahahahahahahaha. Oh, she closed her eyes once or twice, but this girl is stubborn. Even after she got the owl, she still wasn't going to sleep.
Once we returned to the room it was close to 2:00. Had I let them start the antibody on time today we would be finishing up at this point. I wonder what I had gained with the approach I took....for all the agitation and frustration we went thru we could have just put her on the antibody and dealt with the same amount of screaming and been done with the treatment! How was I to know that Lisa was going to be so sleep resistant??
We had to start all the drugs over. We were certain with all the screaming she had done and another round of drugs, Lisa would just collapse in exhaustion. We got all the drugs going again and at 3:00 when we were ready to run the antibody, Lisa was still awake. Admitting defeat I told the nurse to just go ahead and run it, at this point could it get any worse? Sooner or later Lisa would have to tire out, Lord knows I was exhausted. It took the drugs, a bit of force, and a bit of being the "No" mom repeating over and over again "No, you can't get out of bed" "No, you can't take your tubes out" "No, you can't go to McDonald", "No, you can't go for a walk" before Lisa finally fell asleep at 4:15. Her body was already so agitated and tired from the rest of the morning that when the antibody started running her stats barely changed and we didn't notice a big change in attitude, cause really how much more cranky can one get?
She slept until about 7:00, but every time a nurse came in to take her vitals she fussed and screamed. She has been resting most of the evening but is easily agitated. We have one more day to get her thru this course and then hopefully we will be cleared to come home this Friday. I hate wishing days to go by quickly especially knowing our days are numbered, but I honestly cannot wait for tomorrow night to be over.
I pray and pray that tomorrow will be an easy day and that once all the pain meds where off Lisa feels good and can go back to walking and eating and smiling and not have to rebuild up her strength like after course 1.
Why I toyed with how to phrase the question, one of the docs came in this morning a proposed a more structured way to administer the pain drugs with the hope of keeping Lisa more comfortable thru the day. I agreed as my mind did the tug of war of the benefits of continuing vs giving up. If we can control her pain then giving her the antibody makes sense because it could give her a longer life, on the flip side, her quality of life is being compromised and so far she has already given up 6 weeks of life to this study. Also, the effectiveness of the antibody is not known yet. I have gotten different statistics from different people re: how much time this buys kids. One person reported his daughter did well with this antibody over one year ago, another person reported that she knew that 6 of the first 12 patients in this study passed away within 18 mos of completing it.
I agreed with the doctor to continue and give it one more shot with the hopes Lisa would sail thru the day. In my mind I told myself I would not allow them to give her the antibody until she was not sedated and sleeping. We began premeds at 9:30. After giving her tylenol, 2 antihistamines, anti-anxiety and morphine, Lisa was still wide eyed and agitated. The nurse honored my decision not to continue with the antibody until we had Lisa sleeping. We gave her a second dose of morphine...still nothing...except she got a bit more agitated and insisted she wanted to get out of bed and eat. She tried getting out of bed but could barely stand up with all the meds in her...somehow she managed to grab her box of cocoa puffs from the table next to her bed and start eating. Really? The girl is supposed hopped up on pain meds and she wants to eat? After she finished with this distraction she kept asking for an owl I promised to get her from the gift shop once she went to sleep. She would close her eyes for 5 minutes and then open them and tell me she had gone to sleep and wanted her owl. We continued this game until about 1:00 when her regular doctor came to check on her. We discussed our options and she decided the next best thing to do would be to change Lisa's pain med, to see if we could get a better response than with the morphine. Lisa was highly agitated at this time and the doctor and I agreed that we before starting up again, we should take a little break and give the drugs a chance to wear off. I took Lisa her for a walk outside in her wheelchair and we went to the gift shop to get the owl. I was certain the fresh air and sunshine would knock her out. Hahahahahahahahahahahahahahaha. Oh, she closed her eyes once or twice, but this girl is stubborn. Even after she got the owl, she still wasn't going to sleep.
Once we returned to the room it was close to 2:00. Had I let them start the antibody on time today we would be finishing up at this point. I wonder what I had gained with the approach I took....for all the agitation and frustration we went thru we could have just put her on the antibody and dealt with the same amount of screaming and been done with the treatment! How was I to know that Lisa was going to be so sleep resistant??
We had to start all the drugs over. We were certain with all the screaming she had done and another round of drugs, Lisa would just collapse in exhaustion. We got all the drugs going again and at 3:00 when we were ready to run the antibody, Lisa was still awake. Admitting defeat I told the nurse to just go ahead and run it, at this point could it get any worse? Sooner or later Lisa would have to tire out, Lord knows I was exhausted. It took the drugs, a bit of force, and a bit of being the "No" mom repeating over and over again "No, you can't get out of bed" "No, you can't take your tubes out" "No, you can't go to McDonald", "No, you can't go for a walk" before Lisa finally fell asleep at 4:15. Her body was already so agitated and tired from the rest of the morning that when the antibody started running her stats barely changed and we didn't notice a big change in attitude, cause really how much more cranky can one get?
She slept until about 7:00, but every time a nurse came in to take her vitals she fussed and screamed. She has been resting most of the evening but is easily agitated. We have one more day to get her thru this course and then hopefully we will be cleared to come home this Friday. I hate wishing days to go by quickly especially knowing our days are numbered, but I honestly cannot wait for tomorrow night to be over.
I pray and pray that tomorrow will be an easy day and that once all the pain meds where off Lisa feels good and can go back to walking and eating and smiling and not have to rebuild up her strength like after course 1.
Sunday, October 17, 2010
Long day...day 2, dose 2 of antibody HU14.18
Unfortunately, today did not go well. Lisa had lots of pain. She was sedated, but not asleep when the antibody began to run at 9:30am. At the 15 minute mark she was restless and uncomfortable; and, once again, this pivotal time set the pace for the rest of the treatment. Her vitals went crazy and she started fussing. We got the oxygen going and she settled down a little bit but was obviously in pain. As the time ticked by, the pain got worse...at the one hour mark she was crazy with pain and they gave her a second dose of morphine. Hour two was filled with lots of screaming and tears and I tried to wrap my brain around how much pain she must be in that she was still bolting upright even after the second does of morphine had kicked in. Hour three was a bit better and she seemed to get a bit of rest in between her waves of pain. The fourth hour was excruciating to watch (and I'm sure to feel). Lisa was inconsolable and I was mentally sending up prayer after prayer to God and every saint I could think of and sending Mike a "get plane ticket, come now" thoughts. Towards the end of the fourth hour, the rash that appeared yesterday, reappeared with a vengeance. Instead of just dots, she also had the color pink traveling up her body; just looking at her made me itch. Poor thing; she was miserable as she scratched and cried. The doc on call prescribed Zantac (say what?! it's normally used for reflux but apparently has great antihistamine blockers....who knew?) and it helped calm the rash down, but not the pain. She continued to be in and out of pain for the next two hours even though the antibody had finished infusing. At about 3:15, she finally drifted off to sleep and continues to sleep almost two hours later. Thank God.
She has two more days of antibody for this round and if it's going to be like today, it will be very tough for us to get through. I can't imagine the strain this puts on the rest of her body...heart, lungs, etc. It's a very big shock to her system. I pray that the time we put into this is worth it and improves not only her quality of life, but her quantity.
Please continue to pray...the days are long when a child is in pain and you can do nothing to help them.
She has two more days of antibody for this round and if it's going to be like today, it will be very tough for us to get through. I can't imagine the strain this puts on the rest of her body...heart, lungs, etc. It's a very big shock to her system. I pray that the time we put into this is worth it and improves not only her quality of life, but her quantity.
Please continue to pray...the days are long when a child is in pain and you can do nothing to help them.
Saturday, October 16, 2010
Power of Prayer
It is nearly 6:00 here today and so far so good. Once the first hour was over, Lisa remained stable for the rest of the day. She gets pain meds every four hours and this seems to be keeping her comfortable. At 4:00, she sat up, asked for water, told me she felt fine and went back to sleep.
I pray and hope we continue on this peaceful path. She is a wonderful little girl and truly a fighter. I continue to cross fingers, toes and legs and pray constantly that the next few days and recovery at home go smoothly and her pain dissolves and her cancer retreats.
Thank you all for praying!
I pray and hope we continue on this peaceful path. She is a wonderful little girl and truly a fighter. I continue to cross fingers, toes and legs and pray constantly that the next few days and recovery at home go smoothly and her pain dissolves and her cancer retreats.
Thank you all for praying!
1 hour into second antibody course...things now peaceful
Thanks to all of you out there throwing prayers our way. They are working. Lisa was infused at 10:06 this morning. She was doped up on morphine and ativan when it started running. At the 15 minute mark she started coughing, I noticed her face looked mottled and splotchy. I called for the nurse...the next 10 minutes raised by as her her heart rate jumped, her oxygen fell. She was hooked up to oxygen and things started to settle down. She "slept" thru it all. At the 1/2 hour mark she was still zoned on the drugs and her stats stabilized. At the one hour mark, she continues to "rest" and does not seem to be feeling discomfort...yeah!! I hope it continues to go this smoothly. Please, please, please God let her feel peaceful and pain free.
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