Sorry for the lack of updates!. Many people have told me that when we don't update the blog they know everything in fine, because no news is good news. While that is normally the case, I feel a but guilty that the blog has become something of bad news tabloid instead of a sharing of ALL our experiences. As tough as these last 2.5 years have been, there have been some great times, as well as, "normal" times that balance out the bad. I hope to share more of the great with everyone so that a sense of dread does not overwhelm everyone anytime an update goes out!
So, here's some great and normal news. We had a wonderful Thanksgiving. It was nothing out of the ordinary, it was one spent with family instead of in a hospital room. We were doubly blessed because we got to do one Thanksgiving dinner with my family on Thanksgiving day and another Thanksgiving dinner with Mike's family on Saturday. We really enjoyed spending time with both sides of the family.
Mike's family was surprised when his brother Brian appeared in the house unannounced. He and his family had traveled from Alabama this year to be be with everyone. All the kids were thrilled, they have missed their cousins quite a bit. It is so wonderful to see this next generation come together, hang out, go swimming, watch movies, play games, even though their ages span from 10-16. It's also amazing to see how how these "kids" are growing up into "people" who you can actually converse with and share jokes, memories and stories with.
Thanksgiving is a time where we can really take a look and count our blessings. I sometimes struggle with this, but this year I was able to come up with a few things. I am blessed:
-To have a wonderful husband and 4 beautiful, funny, intelligent children
-To have both my parents and my mother-in-law with us and in good health
-To have so many people who love and support me
-To have my own health
-To have a safe, comfortable place to call home
-To have a chance to make a difference with my life
I'm sure I could come up with more, but those are the ones that came to me immediately.
By Wednesday of this week, we will have a better idea of what next steps will be for Lisa. As of today, the doctor thinks we may have her do a "maintenance" chemo next week until we can find a study to put her on.
As always, keep praying, count your blessings and know how loved you are!
Monday, November 29, 2010
Sunday, November 21, 2010
The options
Sorry to keep everyone waiting for news after our doctor appt this week. I was at the hospital both Thursday and Friday for quite a while visiting/helping two different friends whose children were in for care. It was kind of nice being able to focus on someone else's problems for a bit.
On Wednesday, the doctor listed out seven options for us. None of them are a "cure". They are all "trial" drugs/therapies. They are still in test phase to determine how they impact neuroblastoma cells...do they slow the growth, stop the growth or do nothing....all of the options are things to "try" vs doing nothing at all.
The number one option---Senecca Valley Virus--seemed like the way to go and we were told there would be a trial opening in two weeks. Unfortunately, because Lisa is not toilet trained at night and has been having incontinence issues since the antibody therapy she is not eligible for this study. Crazy...who would think our decision to focus on fighting cancer instead of toilet training at night would bite us in the butt!!It was pretty disappointing to hear that she couldn't participate in this study. We've heard good things about it and we want to try everything and anything to beat this miserable disease.
The next option--ALK inhibitor---is most likely the one we will try next. Again, the success of this therapy is limited and not known to cure but hopefully could slow the cancer down until a cure is found. The waiting for a spot to open is nerve wracking because of the waiting, we don't want to give the cancer a chance to take over.
Lisa so far, looks great and seems to recover more and more each day from the antibody effects. I continue to reach out to some of the neuroblastoma support groups and doctors to see if there is anything else we might be doing. We are in good hands at U of M and we are very happy with our care. We continue to read and be on the lookout everyday for the miracle, the thing that will make this cancer a thing of the past. And of course, we continue to pray!
On Wednesday, the doctor listed out seven options for us. None of them are a "cure". They are all "trial" drugs/therapies. They are still in test phase to determine how they impact neuroblastoma cells...do they slow the growth, stop the growth or do nothing....all of the options are things to "try" vs doing nothing at all.
The number one option---Senecca Valley Virus--seemed like the way to go and we were told there would be a trial opening in two weeks. Unfortunately, because Lisa is not toilet trained at night and has been having incontinence issues since the antibody therapy she is not eligible for this study. Crazy...who would think our decision to focus on fighting cancer instead of toilet training at night would bite us in the butt!!It was pretty disappointing to hear that she couldn't participate in this study. We've heard good things about it and we want to try everything and anything to beat this miserable disease.
The next option--ALK inhibitor---is most likely the one we will try next. Again, the success of this therapy is limited and not known to cure but hopefully could slow the cancer down until a cure is found. The waiting for a spot to open is nerve wracking because of the waiting, we don't want to give the cancer a chance to take over.
Lisa so far, looks great and seems to recover more and more each day from the antibody effects. I continue to reach out to some of the neuroblastoma support groups and doctors to see if there is anything else we might be doing. We are in good hands at U of M and we are very happy with our care. We continue to read and be on the lookout everyday for the miracle, the thing that will make this cancer a thing of the past. And of course, we continue to pray!
Sunday, November 14, 2010
Bittersweet News
We are home! We flew home yesterday with Lisa looking good and feeling good....that is the good news. We came home early because Lisa is not responding to the treatment...her cancer has grown...that is the bad news.
While this was one of the most enjoyable times we had at St Judes with lots of activities to particpate in, our visit was short because of Lisa's scan results. Scans this month compared to last month show multiple spots in both her right and left leg and parts of her groin area. This is not news we wanted to hear. When the doctor told me, I basically put up my "wall", shut off my feelings, and proceeded to book a flight home. It's still too fresh and painful to talk or think about so I'm basically in the "feel nothing, think nothing and pretend none of this is happening mode". Mike and I will be meeting with our U of M docs soon to determine next steps; options are few and very limited.
Lisa knows her cancer is "winning" but is glad to be home and willing and able to fight back. There is still room for miracles. As we rev up for the holiday seasons the one word that is constant in my mind is Believe. Believe, Believe, Believe.
Please keep praying....and keep Lisa on the prayers lists...she (and all the other little cancer warriors) need a miracle.
While this was one of the most enjoyable times we had at St Judes with lots of activities to particpate in, our visit was short because of Lisa's scan results. Scans this month compared to last month show multiple spots in both her right and left leg and parts of her groin area. This is not news we wanted to hear. When the doctor told me, I basically put up my "wall", shut off my feelings, and proceeded to book a flight home. It's still too fresh and painful to talk or think about so I'm basically in the "feel nothing, think nothing and pretend none of this is happening mode". Mike and I will be meeting with our U of M docs soon to determine next steps; options are few and very limited.
Lisa knows her cancer is "winning" but is glad to be home and willing and able to fight back. There is still room for miracles. As we rev up for the holiday seasons the one word that is constant in my mind is Believe. Believe, Believe, Believe.
Please keep praying....and keep Lisa on the prayers lists...she (and all the other little cancer warriors) need a miracle.
Thursday, November 11, 2010
Lisa turned Matt Lauer into a frog
Today was the big pajama party at St Jude. The one that the Today show and Marla Thomas were supposedly filming for viewing over the Thanksgiving week. While most of the day things were pretty quiet, Lisa and I did run into a camera crew who was touring the building after one of her appointments. Lisa had just received a "magic" wand as her prize for doing a good job and as we were cruising by the camera crew she said "abracadabra..I turn you into a frog" and pointed the wand at the last guy. The rest of the crew all laughed and smiled and pointed at their buddy. Lisa and I proceeded to the cafeteria and I told her she really should have turned the guy back to a human because he was there working and she couldn't just turn everyone she saw into a frog. She agreed to limit the use of her power.
As we circled the hospital again a while later, we ran into the same crew again and the "frog guy" ribbited at us. Lisa graciously turned him back into a man. The crew laughed and as we reached the end of the hall, there was Matt Lauer all by himself waiting for the crew. I knew they were busy and didn't want to interrupt him so I wheeled Lisa on by. We got a few steps past and I stopped and told Lisa "If there's anyone you should turn into a frog, it's that man." Lisa twirled her wand, said the magic words and turned Matt Lauer into a frog. He saw her do it and came over to ask what she said and than begged her to please not turn him into a frog...she quickly turned him back into a man. He asked her name, shook her hand and told her it was nice to meet her. As he walked away, it occurred to me that I'd just missed a Kodak moment. I figured we would catch him later at the pajama party.
A short time later we passed Marlo Thomas in the hall. I walked right by her as she blended right in with all the other business women standing around her, but then I heard her voice and realized I could have reached out and touched her. Once again, I opted not to disturb her and wait for the Kodak moment later at the pajama party.
Unfortunately, the Kodak moment never came. While Lisa was in her last appointment for the day, they kicked off the pj party and Marlo and Matt made their appearances in their pjs and then they were gone. While I was disappointed, Lisa was quite satisfied with the dancing, arts and crafts, and cookies that were offered.
It was a really fun time and we followed it up with a BINGO game at our hotel where Lisa won numerous prizes leaving me wondering how the heck we would get everything home.
It really has been a fun week, one that has been full of activities that have made the days special. It really showcased what St. Jude is famous for...being the number one pediatric cancer hospital in the world. A place that is seeking cures to assure, as Danny Thomas' said, that “no child should die in the dawn of life”; a place that is making sure that these little cancer warriors are blessed with special moments as they fight for their lives.
As we circled the hospital again a while later, we ran into the same crew again and the "frog guy" ribbited at us. Lisa graciously turned him back into a man. The crew laughed and as we reached the end of the hall, there was Matt Lauer all by himself waiting for the crew. I knew they were busy and didn't want to interrupt him so I wheeled Lisa on by. We got a few steps past and I stopped and told Lisa "If there's anyone you should turn into a frog, it's that man." Lisa twirled her wand, said the magic words and turned Matt Lauer into a frog. He saw her do it and came over to ask what she said and than begged her to please not turn him into a frog...she quickly turned him back into a man. He asked her name, shook her hand and told her it was nice to meet her. As he walked away, it occurred to me that I'd just missed a Kodak moment. I figured we would catch him later at the pajama party.
A short time later we passed Marlo Thomas in the hall. I walked right by her as she blended right in with all the other business women standing around her, but then I heard her voice and realized I could have reached out and touched her. Once again, I opted not to disturb her and wait for the Kodak moment later at the pajama party.
Unfortunately, the Kodak moment never came. While Lisa was in her last appointment for the day, they kicked off the pj party and Marlo and Matt made their appearances in their pjs and then they were gone. While I was disappointed, Lisa was quite satisfied with the dancing, arts and crafts, and cookies that were offered.
 |
| Lisa and her St Jude Child Life Specialist at PJ party |
It was a really fun time and we followed it up with a BINGO game at our hotel where Lisa won numerous prizes leaving me wondering how the heck we would get everything home.
It really has been a fun week, one that has been full of activities that have made the days special. It really showcased what St. Jude is famous for...being the number one pediatric cancer hospital in the world. A place that is seeking cures to assure, as Danny Thomas' said, that “no child should die in the dawn of life”; a place that is making sure that these little cancer warriors are blessed with special moments as they fight for their lives.
Tuesday, November 9, 2010
Time Flies and so do we!
Not sure how it happened but the two weeks we were home flew by (sorry for so few posts) and we are back at St Jude. We got in last night and started appointments this afternoon. Lisa and I are both exhausted and I"m not sure why...the time change in MI and the time difference here should put us right back on track, but for some reason we are out of whack.
Both Lisa and I are cranky and very reluctant to be here. Last night when we checked into our room, Lisa took one look and said she wanted a different one; apparently now that we are frequent visitors to St Jude we've been down-graded to the regular room instead of the suite. When I asked why, I was told the suites are only for the new patients. Wow, talk about bait and switch...it's like they are trying to impress you the first time you're here, but after they got you, they know they'll keep you coming back. I would have rather just had the regular room to start with so I wouldn't know what I was missing! I rearranged the room a bit so Lisa could have a place to play and we've settled in.
We were able to participate in a fun activity today. The National Auctioneers Association (NAA)was here today and took some time to teach the kids some tricks of the trade and then they had an auction with toys for the kids to bid. The NAA provided all the toys and gave each child an auction paddle that they used to do their bidding (no money was involved just lots of paddle waving and fast talking). All the child had to do was wave his paddle when they saw the toy they wanted. I'm sure you all know what Lisa set her eyes on...yes, a baby doll...the only one at Target we don't have...the one that goes in the bath. It was very fun and she was a happy girl.
Rumour has it that Thursday night there will be a pajama party in the cafeteria and that Marlo Thomas and the Today show may be present. While I'm excited about the possibility of meeting "that girl!" I'm not excited about the hubbabaloo that comes with the tv crews and possible filming. Oh well, that's the price we pay for being at such a famous hospital!
Both Lisa and I are cranky and very reluctant to be here. Last night when we checked into our room, Lisa took one look and said she wanted a different one; apparently now that we are frequent visitors to St Jude we've been down-graded to the regular room instead of the suite. When I asked why, I was told the suites are only for the new patients. Wow, talk about bait and switch...it's like they are trying to impress you the first time you're here, but after they got you, they know they'll keep you coming back. I would have rather just had the regular room to start with so I wouldn't know what I was missing! I rearranged the room a bit so Lisa could have a place to play and we've settled in.
We were able to participate in a fun activity today. The National Auctioneers Association (NAA)was here today and took some time to teach the kids some tricks of the trade and then they had an auction with toys for the kids to bid. The NAA provided all the toys and gave each child an auction paddle that they used to do their bidding (no money was involved just lots of paddle waving and fast talking). All the child had to do was wave his paddle when they saw the toy they wanted. I'm sure you all know what Lisa set her eyes on...yes, a baby doll...the only one at Target we don't have...the one that goes in the bath. It was very fun and she was a happy girl.
Rumour has it that Thursday night there will be a pajama party in the cafeteria and that Marlo Thomas and the Today show may be present. While I'm excited about the possibility of meeting "that girl!" I'm not excited about the hubbabaloo that comes with the tv crews and possible filming. Oh well, that's the price we pay for being at such a famous hospital!
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