Lisa's latest scans confirm that there is new disease [Neuroblastoma] evident in the spine as well as soft tissue growth around the spine. Additionally there is new soft tissue growth in the neck area.
So the plan is this: (1) Lisa will start chemo tonight and continue again on Thursday and Friday. (2) She will begin radiation therapy Thursday to target the aggressive growth around the spine. (3) We'll have to begin pain management regimen and palliative care.
She certainly won't be discharged until the fever subsides for more than 24 hours. She spiked to 103.1 coming out of the MRI, which will keep her her at least until tomorrow evening but I seriously doubt we'll get out before the weekend.
So there's where we are at. Please continue to send Lisa your best. We'll update the blog as we get more to post.
Wednesday, August 8, 2012
Prayer chain
I was just getting ready to head out the door, but have been stopped by a very loud nagging in my head that has directed me to post a request for a prayer chain. My mother always said when two or more people pray together God will answer. I ask that all those of you who are reading, please set your watches for 11am, 2pm, 5pm and 8pm est today and say a prayer for Lisa. Pray that she recovers from this and is able to have many, many more pain-free, healthy quality days with us on earth.
Mike's update from the night was as follows:
She’s resting
and sleeping so I’m guessing that her pain is manageable while she is laying
still. She did get up to go to the bathroom twice during the night with a lot
of pain. She’s very unsteady too but that is in part due to the heavy meds. She
did wet the bed a little the first time so she’s out of underwear and pants and
into those peach diapers. The second time the diaper was wet too.
Last morphine
was given at 11PM last night. After midnight her breathing slowed to only 7
breaths per minute, her oxygen level was still good, but they’re temporarily
holding off on the morphine so she’s not too out of it. She’s not complaining
and resting quietly.
She had a
fever of 101.3 this morning at about 5:30 so they gave her Tylenol.
And she just
asked me for a hug.
Please Pray, Pray, Pray
Please pray....Lisa is not doing well....she has had pain in her back ever since bone marrow biopsy last week. The pain progressed to her legs this weekend and walking became more and more difficult. Today I went to check on her before I left for work and she looked awful. She had spiked a temperature and could not get out of bed.
I took her to ER where we spent most of the day until we were finally admitted to the 7th floor at about 3:00. She is being treated for possible infection but until blood tests come back we have no way of knowing what the problem is...an infection or cancer progressing. We now wait to see what cultures show over next few days and whether she can regain her strength. This situation has made isolation radiation too risky and now we wait to see if she can recover from this to determine next steps.
Her spirit is still strong, but her body is aching. I have much more to say, but I cannot write, the tears have overcome me and the fear has me shutting down.
Pray, pray, pray....it cannot be her time....pray, don't stop believing....BELIEVE, PRAY, BEG...please.
I took her to ER where we spent most of the day until we were finally admitted to the 7th floor at about 3:00. She is being treated for possible infection but until blood tests come back we have no way of knowing what the problem is...an infection or cancer progressing. We now wait to see what cultures show over next few days and whether she can regain her strength. This situation has made isolation radiation too risky and now we wait to see if she can recover from this to determine next steps.
Her spirit is still strong, but her body is aching. I have much more to say, but I cannot write, the tears have overcome me and the fear has me shutting down.
Pray, pray, pray....it cannot be her time....pray, don't stop believing....BELIEVE, PRAY, BEG...please.
Friday, August 3, 2012
Scan Results:)
Lisa's nurse shared the news yesterday:
CT scan: stable
MRI of head:stable
MIBG scan: mixed bag.....more uptake in some of the bony areas, but there was one small are of improvement?!
We are still waiting for the doctor to review the finding but based on what he told me Tuesday, I'm pretty sure that Lisa will be doing the MIBG Radiation/Isolation treatment next week. Her brain scan, which was his biggest concern, had no new areas of activity.
How the heck there was an improvement in one are of her leg bone is a total mystery. She's not had any treatment for over 5 weeks. For a few moments, I indulge in the fantasy that her body has finally figured out how to cure itself and if we just quit all treatment her body would do it's own thing and cure its self. Reality crashes into the fantasy when I think about all the other areas that showed an increase in growth....most likely, that area of improvement was just a misread of a scan or some other anomaly....but will take improvement any way we can get it.
Soooooo, unless the doctor says differently, next week Wed Lisa will be admitted for high dose MIBG radiation and be in isolation. Looks like my weekend will be spent putting together some items that she can take into the room but won't miss when she has to leave them behind:)
Fingers crossed and prayers going up that Lisa sails thru this treatment as easily as she did before.
CT scan: stable
MRI of head:stable
MIBG scan: mixed bag.....more uptake in some of the bony areas, but there was one small are of improvement?!
We are still waiting for the doctor to review the finding but based on what he told me Tuesday, I'm pretty sure that Lisa will be doing the MIBG Radiation/Isolation treatment next week. Her brain scan, which was his biggest concern, had no new areas of activity.
How the heck there was an improvement in one are of her leg bone is a total mystery. She's not had any treatment for over 5 weeks. For a few moments, I indulge in the fantasy that her body has finally figured out how to cure itself and if we just quit all treatment her body would do it's own thing and cure its self. Reality crashes into the fantasy when I think about all the other areas that showed an increase in growth....most likely, that area of improvement was just a misread of a scan or some other anomaly....but will take improvement any way we can get it.
Soooooo, unless the doctor says differently, next week Wed Lisa will be admitted for high dose MIBG radiation and be in isolation. Looks like my weekend will be spent putting together some items that she can take into the room but won't miss when she has to leave them behind:)
Fingers crossed and prayers going up that Lisa sails thru this treatment as easily as she did before.
Wednesday, August 1, 2012
Scans and Biopsy Today - Wednesday August 1
Mike here:
Bone Marrow Biopsy, CT scan, MRI, and MIBG scans today. These are pretty routine for our little warrior but these will also confirm Lisa's eligibility for next week's MIBG therapy. Linda's meeting yesterday with the doctors left her with the nagging feeling that Lisa may not be eligible for the therapy.
The problem is that Lisa must show evidence of disease to participate in the treatment but if there is disease in the brain then she will not be eligible. We know there is a mass in the brain that we dealt with last fall and that remnants of it remain. What we are unsure of is whether or not that mass is cancerous. Residuals of her radiation treatment in the fall and small daily doses of steroids are able to keep the mass under control, for the moment.
The risk during MIBG therapy comes while Lisa remains highly irradiated. If a problem with the mass in her brain emerges, the radiation is high enough to preclude any emergency intervention that would be necessary.
So that's where we are today. I've got my marching orders and I will be at Mott shortly. Send her your very best.
Bone Marrow Biopsy, CT scan, MRI, and MIBG scans today. These are pretty routine for our little warrior but these will also confirm Lisa's eligibility for next week's MIBG therapy. Linda's meeting yesterday with the doctors left her with the nagging feeling that Lisa may not be eligible for the therapy.
The problem is that Lisa must show evidence of disease to participate in the treatment but if there is disease in the brain then she will not be eligible. We know there is a mass in the brain that we dealt with last fall and that remnants of it remain. What we are unsure of is whether or not that mass is cancerous. Residuals of her radiation treatment in the fall and small daily doses of steroids are able to keep the mass under control, for the moment.
The risk during MIBG therapy comes while Lisa remains highly irradiated. If a problem with the mass in her brain emerges, the radiation is high enough to preclude any emergency intervention that would be necessary.
So that's where we are today. I've got my marching orders and I will be at Mott shortly. Send her your very best.
Wednesday, July 25, 2012
"Cruiseitis'
Cruiseitis - general feeling of lethargy and ill-being experienced after having enjoyed a wonderful time on a cruise.
Our cruise ended on Saturday, drive home from Boston ended "midnight" Sunday, "Cruiseitis" commenced when we got off the ship and is just now starting to wear off.
The teens enjoyed their freedom and running around the ship where the action never stopped. They had fun ordering new foods at dinner knowing if they didn't like it they could order something else or just hit up the ice cream and pizza stations that operated all hours.
Lisa enjoyed running around the ship with Mike or I in tow and proving us wrong numerous times on how to get somewhere. I still don't know how she figured out the lay of the land so quickly!
Mike and I enjoyed the food:), the shows, and most of all...the 62 family members on-board with us:)
Maranda, Chrissy and I got off in the port of St. John to do some zip lining with some of the family members. It was a wonderful treat, however the decision to walk back the "less than 2 miles" was not the best one for me. That was the longest 2 miles ever and the fact that we were keeping up with the pace our long-legged family members didn't help. Good thing there was a ship buffet waiting for us when we got back....despite our exhaustion, we managed to go directly there and "refuel" ourselves:)
Chrissy, Thomas and I got of in the port of Halifax and enjoyed looking at the Tall Ships. Chrissy, our adventure loving girl and pirate at heart, was ready to scurry up the ropes and help take in the sails on the one ship that arrived as we were walking by. We enjoyed strolling thru Halifax and going thru their Maritime Museum....although I seriously question why the heck we spent over and hour exploring the Titantic exhibit when we had to get back on a big ship:)
Mike and Lisa chose to never leave the boat. They enjoyed using the pool and other activities when the crowds were away. I have to say they both also really liked our room and found the bed so comfortable that they made sure to get our money's worth by having a daily nap:)
A good time was had by all and we are just now recovering and trying to enjoy the last few weeks before all the school activities begin:(
This week is hospital free:) but next week will be scans and the following week Lisa is scheduled for MIBG radiation (this is the 3-5 day isolation treatment where she is in a room and we have to stay on the other side of the wall). We are once again hopeful that this brings us good results and beats back the cancer so we can all continue to enjoy living life.
Keep the prayers coming!
Our cruise ended on Saturday, drive home from Boston ended "midnight" Sunday, "Cruiseitis" commenced when we got off the ship and is just now starting to wear off.
The teens enjoyed their freedom and running around the ship where the action never stopped. They had fun ordering new foods at dinner knowing if they didn't like it they could order something else or just hit up the ice cream and pizza stations that operated all hours.
Lisa enjoyed running around the ship with Mike or I in tow and proving us wrong numerous times on how to get somewhere. I still don't know how she figured out the lay of the land so quickly!
Mike and I enjoyed the food:), the shows, and most of all...the 62 family members on-board with us:)
Maranda, Chrissy and I got off in the port of St. John to do some zip lining with some of the family members. It was a wonderful treat, however the decision to walk back the "less than 2 miles" was not the best one for me. That was the longest 2 miles ever and the fact that we were keeping up with the pace our long-legged family members didn't help. Good thing there was a ship buffet waiting for us when we got back....despite our exhaustion, we managed to go directly there and "refuel" ourselves:)
Chrissy, Thomas and I got of in the port of Halifax and enjoyed looking at the Tall Ships. Chrissy, our adventure loving girl and pirate at heart, was ready to scurry up the ropes and help take in the sails on the one ship that arrived as we were walking by. We enjoyed strolling thru Halifax and going thru their Maritime Museum....although I seriously question why the heck we spent over and hour exploring the Titantic exhibit when we had to get back on a big ship:)
Mike and Lisa chose to never leave the boat. They enjoyed using the pool and other activities when the crowds were away. I have to say they both also really liked our room and found the bed so comfortable that they made sure to get our money's worth by having a daily nap:)
A good time was had by all and we are just now recovering and trying to enjoy the last few weeks before all the school activities begin:(
This week is hospital free:) but next week will be scans and the following week Lisa is scheduled for MIBG radiation (this is the 3-5 day isolation treatment where she is in a room and we have to stay on the other side of the wall). We are once again hopeful that this brings us good results and beats back the cancer so we can all continue to enjoy living life.
Keep the prayers coming!
Monday, July 16, 2012
Not the way we planned to kick off our cruise!
Hello all!
I know the posts have been far and in between but that is because we have been trying to keep busy. We kicked off the summer with 3 weeks at the lakehouse that was filled with fun, friends, graduation partys, Chrissy's 13th birthday, dancing at Camp Dearborn to our favorite band, wake boarding lessons for the whole family and of course, routine trips to the hospital for chemo.
We enjoyed July 4th at the lakehouse and watched from the middle of the lake while neighbors lit off fireworks on all sides. The last 10 days have been filled with excitement and anticipation as we prepared for our family cruise that includes 60+ relatives on Mike's side of the family. The cruise departs from Boston and goes north to Nova Scotia.
We (me) packed until late in the night Friday. We left early Saturday morning for Niagara Falls, CA a little side trip on our way to Boston. Things went well except for Lisa continuous complaints about a headache which had started Friday night and persisted through our drive north. We gave her meds hoping to take care of the pain. The meds seem to keep the pain from getting too intense but it never seemed to leave her. Cancer Warrior that she is, she toughed it out and even endured the long, hot, sweaty wait in line to ride Maid of the Mist at Niagara Falls. Once we were done with that site seeing excursion, we were pretty much done....well done, from the heat. We had a little bit of ice cream and then headed back to the room. The older kids went swimming and Lisa took a long nap.
Her headache persisted even though we continued to give her pain killers. The drive to Boston was uneventful except for the growing stress of "what if" Lisa's headaches were a repeat of October. Deciding to play it safe Mike dropped Lisa and I off at Boston Children's hospital and took the rest of the kids to our hotel. The hospital was wonderful and ran scans and tests and were able to confirm that there was nothing imminent appearing on scans. Thank God! What a relief. I texted Mike to come get us and finally felt a surge of excitement knowing that we are going on a cruise. Yeah! It was not the way I planned to kick off the cruise, but the sense of relief I now feel was well worth the 5 hours spent in the ER.
We are getting ready to head off to the ship now where we will be without Internet connection or cell phone for a week.
Hope all of you are having good summer. Keep us in your thoughts and pray that we have a safe and healthy trip.
Bon Voyage:)
I know the posts have been far and in between but that is because we have been trying to keep busy. We kicked off the summer with 3 weeks at the lakehouse that was filled with fun, friends, graduation partys, Chrissy's 13th birthday, dancing at Camp Dearborn to our favorite band, wake boarding lessons for the whole family and of course, routine trips to the hospital for chemo.
We enjoyed July 4th at the lakehouse and watched from the middle of the lake while neighbors lit off fireworks on all sides. The last 10 days have been filled with excitement and anticipation as we prepared for our family cruise that includes 60+ relatives on Mike's side of the family. The cruise departs from Boston and goes north to Nova Scotia.
We (me) packed until late in the night Friday. We left early Saturday morning for Niagara Falls, CA a little side trip on our way to Boston. Things went well except for Lisa continuous complaints about a headache which had started Friday night and persisted through our drive north. We gave her meds hoping to take care of the pain. The meds seem to keep the pain from getting too intense but it never seemed to leave her. Cancer Warrior that she is, she toughed it out and even endured the long, hot, sweaty wait in line to ride Maid of the Mist at Niagara Falls. Once we were done with that site seeing excursion, we were pretty much done....well done, from the heat. We had a little bit of ice cream and then headed back to the room. The older kids went swimming and Lisa took a long nap.
Her headache persisted even though we continued to give her pain killers. The drive to Boston was uneventful except for the growing stress of "what if" Lisa's headaches were a repeat of October. Deciding to play it safe Mike dropped Lisa and I off at Boston Children's hospital and took the rest of the kids to our hotel. The hospital was wonderful and ran scans and tests and were able to confirm that there was nothing imminent appearing on scans. Thank God! What a relief. I texted Mike to come get us and finally felt a surge of excitement knowing that we are going on a cruise. Yeah! It was not the way I planned to kick off the cruise, but the sense of relief I now feel was well worth the 5 hours spent in the ER.
We are getting ready to head off to the ship now where we will be without Internet connection or cell phone for a week.
Hope all of you are having good summer. Keep us in your thoughts and pray that we have a safe and healthy trip.
Bon Voyage:)
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