Lisa hit the wall at about 5:00 this morning....1 hour after crazy Mom decided to go to bed. She had been a bit nauseous thru the night with a few upsets. I was so tuned into my work that I didn't notice the night had turned into the wee hour of the morning. I finally went to bed at 4:00 only to be woken an hour later by Lisa's machine going off. As I silenced the machine, Lisa gave me a look and we both grabbed for the bucket. It looked like creamed corn, it smelled like creamed corn.....it wasn't creamed corn. Ick, Ick, Ick. I have to say, the kid is a trooper. Multiple trips to the bathroom ensued between 5 am and 9 am with Lisa clearing the pipes both ways. She finally settled down for about an hour and I grabbed a quick shower. At about 10 she was at it again. As she stumbled out of the bathroom butt-naked her doctors came in. As they talked about her progress and symptoms, Lisa planted her face onto the clean diaper on the bed. She laid there for a second and then leaned over into the bucket. She put on quite the show for the docs. It was quite comical as everyone maintained their composure and the docs kept talking and Lisa kept barfing and laying her head on a clean diaper. The Benadryl finally kicked in and she is sleeping now, with her head resting on the clean diaper.
You go girl!
Friday, February 27, 2009
Thursday, February 26, 2009
I am stunned!
I can't believe how well Lisa is doing today. It is so awesome!!!! I wasn't really sure what to expect...but this is a wonderful reprieve.
Yesterday was pretty rough. Lisa just didn't feel good, she's was nauseous and achy and whiny. By the time Mike relieved me, I wasn't sure who was more whiny...her or me....I couldn't take it anymore. I really questioned how I was going to last for the next two weeks.
But today is great. When I opened the door to the room, I expected the moans and groans and the "hospital smell" of the sick. I was stunned when Lisa beamed "hello", a big smile was in place of the groans and the smell of creamed corned replaced the hospital smell. I was even more shocked when she ate a pretzel and drank some water. Wow...this was totally unexpected.
The nurse was just talking with me and commenting on how good Lisa was doing, but again cautioned that things are going to get worse before they get better. So...I going to the get the most out of tonight....what a difference a week has made....it's so nice to have good day!
Yesterday was pretty rough. Lisa just didn't feel good, she's was nauseous and achy and whiny. By the time Mike relieved me, I wasn't sure who was more whiny...her or me....I couldn't take it anymore. I really questioned how I was going to last for the next two weeks.
But today is great. When I opened the door to the room, I expected the moans and groans and the "hospital smell" of the sick. I was stunned when Lisa beamed "hello", a big smile was in place of the groans and the smell of creamed corned replaced the hospital smell. I was even more shocked when she ate a pretzel and drank some water. Wow...this was totally unexpected.
The nurse was just talking with me and commenting on how good Lisa was doing, but again cautioned that things are going to get worse before they get better. So...I going to the get the most out of tonight....what a difference a week has made....it's so nice to have good day!
Transplant
5 minutes before transplant and the anticipation is building. By all accounts this is a huge moment. Without the transplant, which is basically an infusion in this case since the cells are her own, she's defenseless. She won't survive. That part is so surreal. She's doing "very well" considering what she has been through the past 7 days so I can't imagine anything but a successful outcome.
She's sleeping. Good for her. In a few moments a team of doctors, nurses, technicians, and who knows will be in here, and she'll sleep through it all, hopefully. We just gave her some Tylenol and Benadryl to help her cope with some of the side effects so she should sleep through it.
The transplant (transfusion) should only take 15 minutes. I've read that some people consider this a rebirth and treat it like a birthday. Here they come... more later
11:34 AM and were done, just like that.
So the cells arrive in what looks like a five gallon milk container. You know one of those containers that are narrower around the top that milk is collected in. Anyway they take the top off and cool air (must have dry ice in there or something) comes pouring out. The technician puts on an insulating glove and reaches in and pulls out a pouch with her stem cells. It's a tiny thing for the size of the container. She thaws it out in a small heating tray atop of the cart that is carrying the milk bucket and after it's ready hands it to nurse Stephanie, who hangs it on the IV poll and starts the infusion. Just as we read about, the smell of cream corn fills the room. Apparently the preservative that is used in preserving the stem cells is the cause of the smell.
Lisa starts to stir awake as the cool cells are introduced to her body. I think the smell and taste almost make her gag but she manages to settle down and relax. The team of doctors and nurses comment that this is the best infusion they've seen. I wonder what normally happens. This is pretty much what I expected but they seem very pleased that she took it so well. Great!
The doctors have cautioned that she will get "worse" before getting better and that the most difficult days are coming as her blood counts continue to drop and she becomes more susceptible to everything. Keep her in your prayers. We'll keep her isolated, warm, and comfortable.
She's sleeping again. [I silently implore the stem cells] Get to work cells, take hold and heal her. Thank you all for checking in and continuing to pray and send positive energy. We'll update again soon.
She's sleeping. Good for her. In a few moments a team of doctors, nurses, technicians, and who knows will be in here, and she'll sleep through it all, hopefully. We just gave her some Tylenol and Benadryl to help her cope with some of the side effects so she should sleep through it.
The transplant (transfusion) should only take 15 minutes. I've read that some people consider this a rebirth and treat it like a birthday. Here they come... more later
11:34 AM and were done, just like that.
So the cells arrive in what looks like a five gallon milk container. You know one of those containers that are narrower around the top that milk is collected in. Anyway they take the top off and cool air (must have dry ice in there or something) comes pouring out. The technician puts on an insulating glove and reaches in and pulls out a pouch with her stem cells. It's a tiny thing for the size of the container. She thaws it out in a small heating tray atop of the cart that is carrying the milk bucket and after it's ready hands it to nurse Stephanie, who hangs it on the IV poll and starts the infusion. Just as we read about, the smell of cream corn fills the room. Apparently the preservative that is used in preserving the stem cells is the cause of the smell.
Lisa starts to stir awake as the cool cells are introduced to her body. I think the smell and taste almost make her gag but she manages to settle down and relax. The team of doctors and nurses comment that this is the best infusion they've seen. I wonder what normally happens. This is pretty much what I expected but they seem very pleased that she took it so well. Great!
The doctors have cautioned that she will get "worse" before getting better and that the most difficult days are coming as her blood counts continue to drop and she becomes more susceptible to everything. Keep her in your prayers. We'll keep her isolated, warm, and comfortable.
She's sleeping again. [I silently implore the stem cells] Get to work cells, take hold and heal her. Thank you all for checking in and continuing to pray and send positive energy. We'll update again soon.
Tuesday, February 24, 2009
Chemotherapy is DONE
God willing, done forever. Lisa completed her last dose, a high dose at that, today at about 11:00 AM. According to the team she is doing remarkably well. Unfortunately that remarkably well includes one unhappy digestive tract. Between midnight and noon today she threw up 8 times. We've increased the anti nausea meds which seems to help and she's been sleeping for the past couple hours. As we expected she's stopped eating but we've hooked her up to IV nutrition.
The remainder of today and tomorrow is for rest and to clear the chemotherapy drugs from her system. Then on Thursday she'll receive her bone marrow transplant, which should be a bit anticlimactic from what I understand. The BMT team will come in and hang the bag and that will pretty much be it. Since the cells are Lisa's own we don't expect any complications with the transplant. The risk comes from virus, bacteria, and germs while her immune system is recovering.
Thanks for checking in. Keep the prayers coming. We'll update again on Thursday.
The remainder of today and tomorrow is for rest and to clear the chemotherapy drugs from her system. Then on Thursday she'll receive her bone marrow transplant, which should be a bit anticlimactic from what I understand. The BMT team will come in and hang the bag and that will pretty much be it. Since the cells are Lisa's own we don't expect any complications with the transplant. The risk comes from virus, bacteria, and germs while her immune system is recovering.
Thanks for checking in. Keep the prayers coming. We'll update again on Thursday.
Sunday, February 22, 2009
3 down 3 to go
Well, we've got 3 days of chemo done and have 3 more left to go before a day of rest. The first drug thiotepa has left Lisa nauseous but very clean. She's thrown up every day since receiving it both in the morning and night. Because of the drugs toxicity, she had to get 4 baths a day. She handled that pretty well. We started our new drug today-- carboplantin. No baths required, but she seems even more nauseated. As anticipated, she's already stopped eating. We've dropped from eating all the time to eating just 2 spoonfuls of cereal today....1.5 of which she threw up.
She'll have one day of rest...Wed....after that she begins her stem cell transplant. So far the doctors are pleased with her progress. She is one tough cookie and still is getting up and about. Unfortunately because her counts are starting to drop and she has very little immunity she's not allowed in the playroom or around others who might get sick, so the days are pretty long and boring. Click her to read more about Bone Marrow and Stem cell transplant.
A big thanks to Grandma Mc for taking a turn at the hospital last night so Mike and I could have a night off. It was a wonderful reprieve for us and hopefully not to rough on Grandma.
She'll have one day of rest...Wed....after that she begins her stem cell transplant. So far the doctors are pleased with her progress. She is one tough cookie and still is getting up and about. Unfortunately because her counts are starting to drop and she has very little immunity she's not allowed in the playroom or around others who might get sick, so the days are pretty long and boring. Click her to read more about Bone Marrow and Stem cell transplant.
A big thanks to Grandma Mc for taking a turn at the hospital last night so Mike and I could have a night off. It was a wonderful reprieve for us and hopefully not to rough on Grandma.
Thursday, February 19, 2009
Lisa's chemo treatment has started
Lisa was admitted yesterday and chemo started today....apparently the chemicals are so toxic she will require 4 baths a day for the next 4-5 days. After the chemo is completed she will have a day of rest and will start transplant after. Goal is to be out in 3-4 weeks...keep your fingers crossed.
On a personal note...I don't normally share business updates with you, but this seems to be the quickest way for me to get info out to everyone. Borders had to reduce corporate payroll again in what hopefully is the final phase of job eliminations at the corporate level. 136 corporate positions were eliminated yesterday and today. Fortunately, my job was not eliminated but I have been asked to go part-time. While not an ideal situation for Mike and I financially, it allows me to continue to be employed and make some income. God works in mysterious ways and I'm sure this will work out for the best.
Interestingly enough the quote on my calendar today was "Though we may encounter both calm and rough waters, it is all part of the sea of life". Amen to that!
On a personal note...I don't normally share business updates with you, but this seems to be the quickest way for me to get info out to everyone. Borders had to reduce corporate payroll again in what hopefully is the final phase of job eliminations at the corporate level. 136 corporate positions were eliminated yesterday and today. Fortunately, my job was not eliminated but I have been asked to go part-time. While not an ideal situation for Mike and I financially, it allows me to continue to be employed and make some income. God works in mysterious ways and I'm sure this will work out for the best.
Interestingly enough the quote on my calendar today was "Though we may encounter both calm and rough waters, it is all part of the sea of life". Amen to that!
Monday, February 16, 2009
Blip in the radar
Well, the blip in the radar this time is Mike and I. Lisa still has a cough and runny nose which the doctors were okay with. However, Mike is just getting over a fever bug and as I met with Lisa's doc today discussing her symptoms I realized I was running a temp. The decision was made that we should hold off admitting her for a few days to give Mom and Dad time to get back on our feet...the rational being we're not doing her any good if we're not on top of our game.
So, we have a two days to kick this bug. She is scheduled to check in on Wed provide nobody gets any sicker.
So, we have a two days to kick this bug. She is scheduled to check in on Wed provide nobody gets any sicker.
Saturday, February 14, 2009
Still not easy
Lisa ended up being admitted Thursday night because they weren't able to get enough bone marrow collected and needed her there Friday morning to finish the collection. Docs also wanted to keep an eye on her cold.
It has been close to 8 weeks since we have had to stay at Motts. After all the time we've spent here, I figured this stay would be no big deal, it would feel pretty routine. I was surprised as I walked down the hall to relieve Mike how anxious I felt. Feelings of dread, fear and uncertainty came surging through me and I realized that I didn't want to be here and I didn't want my daughter to be in this situation. The severity of the whole thing raced thru my head...this is a wicked disease with no proven cure and a very low survival rate. The treatments, while helping, have no guarantee of success. I feel powerless. As a parent, I can do nothing to help my daughter except to keep subjecting her to treatments which make her feel awful but are the lesser of two evils. My feeling of powerlessness intensifies when I find out that a little boy who had been with us in the hospital during most of our stays was now back on the floor.
When we had first met him, he was recovering from a complication that had caused a head bleed and a stroke. He too is a neuroblastoma patient, but at the time we met, he was cancer free and working to recover from the stroke. We saw him and his family rally. Lisa and I were there the day he regained his speech after months of silence. We were there as he gained strength and started to play games with his physical therapist. We were there for Thanksgiving and all celebrated together. We were there when after nine months of being in the hospital, six of which he was cancer free, he was released to go home. It was the day before Maranda was released, three weeks before Christmas.
Now, he and the neuroblastoma were back on 7th floor of Motts. He had a short six months of remission, most of it spent in the hospital recovering from his stroke. His family works up the courage and strength to fight...again. This is the second child with neuroblastoma we've met who has relapsed. Both the same age as Lisa and with the same diagnosis. It is a bitter pill to swallow. It is hard to stay focused, it is hard to stay positive, it is hard to believe. But, that is all we can do...because what is life without hope? Again, I must remind myself how lucky we are that God has given us this reminder. Life is precious and we should not take it for granted, every minute should count and not just because you or a loved one is fighting cancer. So, go on we will and I will search and grasp for that little ray of hope.
I think of how recently I said the statistics were working against us. The odds of having a child with this type of cancer, the small percentage of children with scoliosis caused by a chiara malformation, the 1 individual out of 16 whose vaccine was contaminated....I think of that and wonder if that is our ray of hope....maybe, just maybe, we will be a minority once again, but in a good way. Maybe, Lisa will be 1 of the few who beats neuroblastoma. We continue to hope and pray.
As long as her cold doesn't get any worse and there are no problems with the vaccine, Lisa is scheduled to be admitted to hospital on Monday 2/16 for chemo followed by bone marrow transplant. She will be in the hospital for a minimum of three weeks. So far all of her treatments have helped to shrink the cancer....this step will be another major attack against the vicious cells. It will be tough on Lisa, but we do what we have to do and we hope and we pray.
It has been close to 8 weeks since we have had to stay at Motts. After all the time we've spent here, I figured this stay would be no big deal, it would feel pretty routine. I was surprised as I walked down the hall to relieve Mike how anxious I felt. Feelings of dread, fear and uncertainty came surging through me and I realized that I didn't want to be here and I didn't want my daughter to be in this situation. The severity of the whole thing raced thru my head...this is a wicked disease with no proven cure and a very low survival rate. The treatments, while helping, have no guarantee of success. I feel powerless. As a parent, I can do nothing to help my daughter except to keep subjecting her to treatments which make her feel awful but are the lesser of two evils. My feeling of powerlessness intensifies when I find out that a little boy who had been with us in the hospital during most of our stays was now back on the floor.
When we had first met him, he was recovering from a complication that had caused a head bleed and a stroke. He too is a neuroblastoma patient, but at the time we met, he was cancer free and working to recover from the stroke. We saw him and his family rally. Lisa and I were there the day he regained his speech after months of silence. We were there as he gained strength and started to play games with his physical therapist. We were there for Thanksgiving and all celebrated together. We were there when after nine months of being in the hospital, six of which he was cancer free, he was released to go home. It was the day before Maranda was released, three weeks before Christmas.
Now, he and the neuroblastoma were back on 7th floor of Motts. He had a short six months of remission, most of it spent in the hospital recovering from his stroke. His family works up the courage and strength to fight...again. This is the second child with neuroblastoma we've met who has relapsed. Both the same age as Lisa and with the same diagnosis. It is a bitter pill to swallow. It is hard to stay focused, it is hard to stay positive, it is hard to believe. But, that is all we can do...because what is life without hope? Again, I must remind myself how lucky we are that God has given us this reminder. Life is precious and we should not take it for granted, every minute should count and not just because you or a loved one is fighting cancer. So, go on we will and I will search and grasp for that little ray of hope.
I think of how recently I said the statistics were working against us. The odds of having a child with this type of cancer, the small percentage of children with scoliosis caused by a chiara malformation, the 1 individual out of 16 whose vaccine was contaminated....I think of that and wonder if that is our ray of hope....maybe, just maybe, we will be a minority once again, but in a good way. Maybe, Lisa will be 1 of the few who beats neuroblastoma. We continue to hope and pray.
As long as her cold doesn't get any worse and there are no problems with the vaccine, Lisa is scheduled to be admitted to hospital on Monday 2/16 for chemo followed by bone marrow transplant. She will be in the hospital for a minimum of three weeks. So far all of her treatments have helped to shrink the cancer....this step will be another major attack against the vicious cells. It will be tough on Lisa, but we do what we have to do and we hope and we pray.
Thursday, February 12, 2009
Thursday the 12th
Mike here: I know some of you were looking for an update today so here is the synopsis of my day with Lisa.
7:30 AM- 9:00 AM - Line placement in left groin area for apheresis (stem cell collection)
9:30 AM - 12:00 PM - MRI of head and recovery.
12:30 PM - 4:00 PM- Apheresis (she finally gets to eat and drink)
4:30 PM - Up to the 7th floor of Mott to wait for the results of the collection... and wait...
About 8:00 PM we get the news that we 'only' got about 2 million cells (hate to be the one who had to count them) and we needed 4 million.
So Lisa was admitted for the night and will collect the rest tomorrow. She'll definitely be back in and admitted on Monday for chemo and bone marrow transplant, followed up by the vaccine trial.
As in the picture taken just before 7:00 AM, Lisa braved it all as we've become accustomed to with her infectious smile and charm.
7:30 AM- 9:00 AM - Line placement in left groin area for apheresis (stem cell collection)
9:30 AM - 12:00 PM - MRI of head and recovery.
12:30 PM - 4:00 PM- Apheresis (she finally gets to eat and drink)
4:30 PM - Up to the 7th floor of Mott to wait for the results of the collection... and wait...
About 8:00 PM we get the news that we 'only' got about 2 million cells (hate to be the one who had to count them) and we needed 4 million.
So Lisa was admitted for the night and will collect the rest tomorrow. She'll definitely be back in and admitted on Monday for chemo and bone marrow transplant, followed up by the vaccine trial.
As in the picture taken just before 7:00 AM, Lisa braved it all as we've become accustomed to with her infectious smile and charm.
Wednesday, February 11, 2009
The pessimist's viewpoint
Mike always puts such a positive spin on things....here's what I'm thinking...."good golly, cut us some slack, I need a vacation in a bad way". I feel like I'm up to my ears and fingers in phone calls and emails.
Mike described the hiccup...bad vaccine....small chance of that happening, but that seems to be a pattern for us recently. So, after phone calls and emails...below are the options the doc outlined for me:
1. Proceed with BMT now (standard approach), do not try vaccine or MIBG treatment
Advantage: no delay
Disadvantage: With aggressive NBL, relapse risk is high
2. Collect stem cells for vaccine generation, proceed with transplant immediately after collection complete
Advantage: gives her a chance to do vaccine trial
Disadvantage: delays BMT in order to do the collection, may still not be able to generate vaccine (although contamination twice is not very likely)
3. Change plans to MIBG based BMT
Advantage: guarantees getting something extra to fight NBL
Disadvantage: MIBG may not be available at this time, not sure if she is eligible for that trial.
Again, this is a very aggressive cancer and there is no known cure that guarantees a long life...but we do what we can.
The positive side as I see it is that we have an awesome team of doctors (that keeps expanding) and they are all working closely with us to make the best decision.
So, as usual, keep the prayers coming!!
Mike described the hiccup...bad vaccine....small chance of that happening, but that seems to be a pattern for us recently. So, after phone calls and emails...below are the options the doc outlined for me:
1. Proceed with BMT now (standard approach), do not try vaccine or MIBG treatment
Advantage: no delay
Disadvantage: With aggressive NBL, relapse risk is high
2. Collect stem cells for vaccine generation, proceed with transplant immediately after collection complete
Advantage: gives her a chance to do vaccine trial
Disadvantage: delays BMT in order to do the collection, may still not be able to generate vaccine (although contamination twice is not very likely)
3. Change plans to MIBG based BMT
Advantage: guarantees getting something extra to fight NBL
Disadvantage: MIBG may not be available at this time, not sure if she is eligible for that trial.
Again, this is a very aggressive cancer and there is no known cure that guarantees a long life...but we do what we can.
The positive side as I see it is that we have an awesome team of doctors (that keeps expanding) and they are all working closely with us to make the best decision.
So, as usual, keep the prayers coming!!
Do Over
Mike here: I arrived at work and got the call even before I sat down. It's the surgeon that removed the tumor from Lisa's abdomen... [inhale deeply] Turns out the vaccine that is being made for Lisa has been contaminated with a bacteria rendering it useless. That's the bad news. The good news is that they still have enough of the tumor to try to make another vaccine. Yea. However they don't have enough white blood cells (or stem cells - I feel like I keep getting them mixed up) So, she'll need to go through the apheresis procedure again. That procedure requires an uncomfortable IV or catheter in the leg for a few days.
So that's the latest as of this morning. We've a lot questions and we'll get those answered in the next day or so. I suspect this will all work to our advantage somehow. Keep your fingers crossed. We'll update soon.
So that's the latest as of this morning. We've a lot questions and we'll get those answered in the next day or so. I suspect this will all work to our advantage somehow. Keep your fingers crossed. We'll update soon.
Monday, February 9, 2009
Another week off from Motts
Well, we got good news and some bummer news. The good news is that the spots on the lung did not appear on the x-ray, so we don't have to worry about that. While they were anticipating on admitting Lisa on Wed, they determined they need another MRI of the brain to measure the tumor there. This is the same tumor that we never realized existed until Oct last year when they told us it shrunk. It doesn't seem to be a big concern, they just want to get a baseline measurement so they can compare it to Oct's tests and future tests.
They've bumped the admit date until next Monday 2/16 which is also good news. It means we get another week off AND Lisa gets to join us in seeing the Lord of the Dance production this Sunday.
The bummer news is....we will have to reschedule our Rainbow Connection/Make a Wish trip to see the princesses in Disney. We had just gotten confirmation for April, but with the date changes of Lisa's transplant, there is no way she will be able to travel by then. Once we've completed this transplant, we will need to be very careful and make sure she isn't in crowded areas or exposed to anything for at least 100 days. She will be making frequent trips to the hospital for testing and transfusions as necessary, so traveling is out of the question for a while.
So, while it's not the end of the world, we are all a bit bummed that the Florida trip has been postponed. We've all been looking forward to it...Lisa counts the days....and it was really lifting our spirits...now, well, I guess we just start counting over.
They've bumped the admit date until next Monday 2/16 which is also good news. It means we get another week off AND Lisa gets to join us in seeing the Lord of the Dance production this Sunday.
The bummer news is....we will have to reschedule our Rainbow Connection/Make a Wish trip to see the princesses in Disney. We had just gotten confirmation for April, but with the date changes of Lisa's transplant, there is no way she will be able to travel by then. Once we've completed this transplant, we will need to be very careful and make sure she isn't in crowded areas or exposed to anything for at least 100 days. She will be making frequent trips to the hospital for testing and transfusions as necessary, so traveling is out of the question for a while.
So, while it's not the end of the world, we are all a bit bummed that the Florida trip has been postponed. We've all been looking forward to it...Lisa counts the days....and it was really lifting our spirits...now, well, I guess we just start counting over.
Saturday, February 7, 2009
Turn up the prayers!
It is early in the morning, I do not feel well, and I cannot sleep. My cold makes it hard to get comfortable, my mind whirs with each toss and turn. While things have been going great, a bit of doubt and fear begin to seep into my mind as I become more awake. The "what-ifs" suddenly come on full-force and I find myself at the computer trying to eradicate the demons in my head.
Things have been going so well, what brings on this onslaught of fear? I think a combination of actually getting an "admit" date for Lisa and some inconclusive information on Maranda may have been the culprits.
They have scheduled this Wed 2/12 as admit date for Lisa. While we know the routine and are familiar with the setup, the reality comes rushing in that, as one source stated, "bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. "
Great...I'm the person who is puke-phobic...yet, for the greater good, I must subject my daughter to this treatment. I'm not a fool, I know there really isn't another option, but in the wee hours of the morning this realization just makes me want to pack up and run away to a hidden island filled with sun, sand and peaceful thoughts (alright, so those of you who know me, know what island it is, so I guess it's not so hidden!).
I guess these next few days will be spent enjoying our last few moments of freedom. They say once we get started, Lisa will be there for a 3-4 weeks if all goes well. I know a lot of you are out there cheering for us and praying and I ask that you throw a few extra prayers our way these next few weeks. There are so many complications that can occur with this treatment that it is really going to be prayer and hope that gets Lisa and the rest of us through. Honestly, if we are out of Motts in 3-4 weeks...I would say we all have witnessed a miracle...so let's hope for that!
The other place we could use a few extra prayers is for Maranda. While her surgery went well, we now find that we are in a situation where there is no real medical data to support what next steps are. Bracing is what the doctor is recommending, however, there is no evidence that this will help, and the few studies that have been done indicate that most children with this condition will end up having spinal fusion regardless of if they wear a brace or not. Here are some summaries from studies:
"There are those who feel that braces are not indicated for the treatment of scoliosis associated with syringomyelia. I would say that although the success rate is lower, until a large series of patients is studied closely and the long term results are published, it is still probably a wise conservative approach to use a brace in an attempt to arrest the progression of the curvature. "
"In conclusion, since the number of cases of patients with scoliosis associated with syringomyelia is small, no hard evidence exists to completely support any recommendations concerning management. "
"It is clear that this disease is rare enough that definitive recommendations cannot be made until multi-center studies are used to accumulate enough data to produce reliable statistics concerning the benefit of various treatments. Until then, each patient and their physicians will continue to make their decisions based on careful counseling in light of the scant information available"
Mike and I are split on "get a brace" decision. Mike feels it wouldn't hurt, so we might as well try it. I feel "it's not proven to help and making Maranda wear it 24 hours/day for the next 3-4 years seems a bit ridiculous if odds are she is still going to have a surgery". Maranda, of course, doesn't know what she feels.
I get a strong feeling that the doctor recommends it just so we feel like we are doing something. Her words were "Parents like to know they've tried everything, that way if surgery does need to occur they are not second-guessing themselves". That still doesn't convince me that bracing is the best next step. I continue to try and gather as much info on this as possible so we can make an informed decision. Maranda will be getting a back xray soon and we are scheduled to meet with doc on 2/23. I'm also talking with my chiropractor and physical therapist to get their thoughts on the issue.
Ok...I'm sure this blog is way too long...but now at least I feel I can go back to sleep.
Thanks for reading and keep on praying!
P.S. Feel free to say a few extra prayers for Thomas and Christina...they certainly have gotten the short end of the stick lately!
Things have been going so well, what brings on this onslaught of fear? I think a combination of actually getting an "admit" date for Lisa and some inconclusive information on Maranda may have been the culprits.
They have scheduled this Wed 2/12 as admit date for Lisa. While we know the routine and are familiar with the setup, the reality comes rushing in that, as one source stated, "bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. "
Great...I'm the person who is puke-phobic...yet, for the greater good, I must subject my daughter to this treatment. I'm not a fool, I know there really isn't another option, but in the wee hours of the morning this realization just makes me want to pack up and run away to a hidden island filled with sun, sand and peaceful thoughts (alright, so those of you who know me, know what island it is, so I guess it's not so hidden!).
I guess these next few days will be spent enjoying our last few moments of freedom. They say once we get started, Lisa will be there for a 3-4 weeks if all goes well. I know a lot of you are out there cheering for us and praying and I ask that you throw a few extra prayers our way these next few weeks. There are so many complications that can occur with this treatment that it is really going to be prayer and hope that gets Lisa and the rest of us through. Honestly, if we are out of Motts in 3-4 weeks...I would say we all have witnessed a miracle...so let's hope for that!
The other place we could use a few extra prayers is for Maranda. While her surgery went well, we now find that we are in a situation where there is no real medical data to support what next steps are. Bracing is what the doctor is recommending, however, there is no evidence that this will help, and the few studies that have been done indicate that most children with this condition will end up having spinal fusion regardless of if they wear a brace or not. Here are some summaries from studies:
"There are those who feel that braces are not indicated for the treatment of scoliosis associated with syringomyelia. I would say that although the success rate is lower, until a large series of patients is studied closely and the long term results are published, it is still probably a wise conservative approach to use a brace in an attempt to arrest the progression of the curvature. "
"In conclusion, since the number of cases of patients with scoliosis associated with syringomyelia is small, no hard evidence exists to completely support any recommendations concerning management. "
"It is clear that this disease is rare enough that definitive recommendations cannot be made until multi-center studies are used to accumulate enough data to produce reliable statistics concerning the benefit of various treatments. Until then, each patient and their physicians will continue to make their decisions based on careful counseling in light of the scant information available"
Mike and I are split on "get a brace" decision. Mike feels it wouldn't hurt, so we might as well try it. I feel "it's not proven to help and making Maranda wear it 24 hours/day for the next 3-4 years seems a bit ridiculous if odds are she is still going to have a surgery". Maranda, of course, doesn't know what she feels.
I get a strong feeling that the doctor recommends it just so we feel like we are doing something. Her words were "Parents like to know they've tried everything, that way if surgery does need to occur they are not second-guessing themselves". That still doesn't convince me that bracing is the best next step. I continue to try and gather as much info on this as possible so we can make an informed decision. Maranda will be getting a back xray soon and we are scheduled to meet with doc on 2/23. I'm also talking with my chiropractor and physical therapist to get their thoughts on the issue.
Ok...I'm sure this blog is way too long...but now at least I feel I can go back to sleep.
Thanks for reading and keep on praying!
P.S. Feel free to say a few extra prayers for Thomas and Christina...they certainly have gotten the short end of the stick lately!
Monday, February 2, 2009
Another week off
Things have been a bit normal around here lately. A nice change. The next phase of Lisa's treatment is on hold until we can figure out what the "spots" are in her lungs that showed up on the CT scan.
Bloodwork indicated it was not a fungus called aspergillus nor was it a cmv virus infection. The doc are thinking it is some type of viral or atypical bacterial and there aren't tests for most of those things, so we are treating it with antibiotics. This seems a little odd considering she is pretty dang healthy and running around like a nut. But right now it's our best defense.
She is scheduled for another CT scan 2/9. That will give us time to see if the thing in the lung is getting bigger, staying the same, or shrinking with the meds. Hopefully all will be gone, because if spots are still there the next step will be a surgical biopsy. (UGH!)
So...we wait another week. I'm feeling much more optimistic these days. Seems like we've turned the corner. I'm feeling pretty confident that the spots will be gone and the scan will come up clean and we can continue with the next phase soon.
Bloodwork indicated it was not a fungus called aspergillus nor was it a cmv virus infection. The doc are thinking it is some type of viral or atypical bacterial and there aren't tests for most of those things, so we are treating it with antibiotics. This seems a little odd considering she is pretty dang healthy and running around like a nut. But right now it's our best defense.
She is scheduled for another CT scan 2/9. That will give us time to see if the thing in the lung is getting bigger, staying the same, or shrinking with the meds. Hopefully all will be gone, because if spots are still there the next step will be a surgical biopsy. (UGH!)
So...we wait another week. I'm feeling much more optimistic these days. Seems like we've turned the corner. I'm feeling pretty confident that the spots will be gone and the scan will come up clean and we can continue with the next phase soon.
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