Quick note with more good news:
Bone marrow was originally at 30-50% disease involvement and is now at 5-10% involvement. That's a great decrease! CT also shows a good decrease of all of the recent growth. Dr. B is very happy with her response to the chemo.
We have consented for cycle #4 of chemo, which is to be cisplatin and etoposide. Hopefully this will be the last round of chemo. She had her hearing tested today to get a baseline because the cisplatin can cause hearing loss. As of now, her hearing is normal. We have a consult for the MIBG therapy in San Francisco on August 7th. That therapy will begin early September, and will either be two or three infusions. I don't know too much about this yet, but Mad will be very radioactive after the treatment. So radioactive that she will have to be in isolation, in a lead-lined room. Sounds awful, right? We will only be allowed to be with her for a short amount of time each day. That amount of time will increase as the days pass and she loses some of the radioactivity. I talked with her a little about this today and she doesn't seem too freaked out about it. She just said that we'd better bring lots of games and movies and things for her to do. At our doctor's suggestion, she is going to be seen by the psychiatrist during her next chemo admission to help her prepare for this period of isolation. So, if it does not go well I guess Zoloft is always an option. Overall it sounds like each treatment period will be about a week. After that we will see where she is at that point and go from there.
I also talked to Dr. B. about the possibility of letting Mad go to her first day or two of Kindergarten. I know this would mean a whole lot to her, and if I'm being honest, to me too. I want her to feel as normal as possible, and to have normal experiences. Her friends have been amazing at looking past her hair loss and just getting on with the playing. I am hopeful that other kids will be able to do the same. Normally kids on this high-level treatment plan don't go to school at all, but Dr. B. said that she is willing to make an exception provided that she is a) out of the hospital on time after cycle #4 and b) her counts are still above 500 at that point. So, we will be crossing our fingers that this can happen for her.
The last of the chemo is going in now (Friday night), and we will be going home tomorrow. Somehow, I'm sure we will see this place again before our next chemo admission....but hopefully not!
July 19, 2013
July 18, 2013
Up and up
The third chemo cycle is going well, and so far Madeleine has been tolerating it beautifully. We were prepared for a lot of sleeping, and a lot of vomiting, as it has been in the past, but are getting virtually none of that. It is the same drugs at the same doses as cycle #2, so I don't know why it's affecting her any different this time, but I won't complain about a good thing. When we go home (hopefully on Saturday), and she is off the anti-emetic drip, things may be different.
A CT was done prior to the start of chemo and it showed further reduction of the tumor (yay!). A bone marrow biopsy also showed reduction of the amount of disease in her marrow! I'm still waiting for the reports to find out the exact measurements, but this is great news! She will have an MIBG scan in a couple weeks and that will give us a good "big picture." Also, we supposedly have a consult in San Francisco with UCSF for the MIBG therapy in three weeks. We are waiting for insurance authorizations and details to get ironed out, but it looks like we will be taking another trip shortly.
Meanwhile we have been keeping busy with some exciting hospital guests:
Madeleine gives therapy dog, "Bug," a checkup.
The Lobos basketball team visited and Madeleine showed them all around our unit. The coordinator got an email from some of them today saying that they would like to come back to visit Madeleine. Pretty cool!
Last, but far from least, came the clowns! Again Madeleine was the official hostess and watched them perform for all of the rooms. She even made them go back to her room so that they could see it. She thought they were hilarious (and they were). These are Ringling Brothers clowns, a husband and wife team.
Tomorrow the Isotopes (baseball players) are coming. Madeleine is not nearly as excited about them "because they are boys."
All in all we couldn't hope for a better chemo visit. Hopefully we'll be outta here soon!
Thanks for the comments on the last post - it does help to know that someone is actually reading!
A CT was done prior to the start of chemo and it showed further reduction of the tumor (yay!). A bone marrow biopsy also showed reduction of the amount of disease in her marrow! I'm still waiting for the reports to find out the exact measurements, but this is great news! She will have an MIBG scan in a couple weeks and that will give us a good "big picture." Also, we supposedly have a consult in San Francisco with UCSF for the MIBG therapy in three weeks. We are waiting for insurance authorizations and details to get ironed out, but it looks like we will be taking another trip shortly.
Meanwhile we have been keeping busy with some exciting hospital guests:
Tomorrow the Isotopes (baseball players) are coming. Madeleine is not nearly as excited about them "because they are boys."
All in all we couldn't hope for a better chemo visit. Hopefully we'll be outta here soon!
Thanks for the comments on the last post - it does help to know that someone is actually reading!
July 14, 2013
And onto Cycle #3
Nine days is the longest amount of time Mad has been out of the hospital since mid-May. Four of those days were spent in Denver, so I can't say that we have been together as a family that whole time.
We both enjoyed Denver. It was really nice to have one-on-one time with Madeleine when she was feeling good. We were able to go to the movies, eat out, spend the day at the zoo with good friends, and we did quite a bit of shopping as well - a rare treat! The stem cell harvest went better than anyone expected; they were able to get enough stem cells for more than three rescues, and it only took one day! It's nice to see her feeling so good. Clinically, she is better than she has been in months. She is walking well, she has an appetite, and she is in great spirits. I am hopeful that all of this means that the chemo is working.
Tomorrow is the start of another hospital admission, this time for scans and a third cycle of chemo. No one is looking forward to going back, but I'm impressed with how well Madeleine is coping with knowing that she has to be inpatient for another week+. By this time she knows how crappy chemo makes her feel but she hasn't complained at all about having to go back.
Below are some pictures from our Denver trip:
Anyone out there? Drop me a comment if you are reading :)
We both enjoyed Denver. It was really nice to have one-on-one time with Madeleine when she was feeling good. We were able to go to the movies, eat out, spend the day at the zoo with good friends, and we did quite a bit of shopping as well - a rare treat! The stem cell harvest went better than anyone expected; they were able to get enough stem cells for more than three rescues, and it only took one day! It's nice to see her feeling so good. Clinically, she is better than she has been in months. She is walking well, she has an appetite, and she is in great spirits. I am hopeful that all of this means that the chemo is working.
Tomorrow is the start of another hospital admission, this time for scans and a third cycle of chemo. No one is looking forward to going back, but I'm impressed with how well Madeleine is coping with knowing that she has to be inpatient for another week+. By this time she knows how crappy chemo makes her feel but she hasn't complained at all about having to go back.
Below are some pictures from our Denver trip:
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| We took full advantage of the frozen yogurt shop! |
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| The results of a day of shopping. |
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| At the zoo with Kieran and Cara |
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| At the airport on the way home we ran into a group of college cheerleaders. They spent a long time showing Mad their pompoms and outfits. Mad has a new career ambition. |
Anyone out there? Drop me a comment if you are reading :)
July 7, 2013
Denver Bound
Madeleine was released from the hospital on 7/4 - just in time to see our local fireworks. She said that seeing the fireworks was "the best night ever," so it was definitely worth all of the effort getting her discharged on time. Our doctor was on the phone all afternoon trying to get everything set up to get her discharged on time.
Madeleine came home on antibiotics to finish clearing up the infection that she had that landed us in the hospital. We have spent a nice weekend at home. Her counts are way up so she is free to play with other kids. We even went out to lunch a little bit ago and were very surprised when the waitress said that another family had completely paid for our meal! We don't know who it was, or why (my nearly-bald child is the only reason I can come up with) but we are very grateful. Gotta love Los Alamos!
We are getting ready to go to Denver early tomorrow morning. We are to go directly from the airport to the hospital for a consultation, and then I'm hoping that we will have the rest of the day free. The stem cell harvest will begin on Tuesday and take two to three days, outpatient. The doctors are hoping to get enough stem cells for three "rescues." In the near future her bone marrow will be completely wiped out by high-dose radiation, or chemotherapy, or both. The stem cells that they get this week will then be reintroduced to her body so that she can begin making her own blood cells again.
This week we found out that UCSF wants Madeleine for a special treatment called MIBG Therapy. This is a relatively new treatment for relapsed neuroblastoma and will take the place of standard radiation and bone marrow transplant. Her oncologist has said all along that this would be a very important piece of Madeleine's treatment so we are thrilled that they want her. MIBG therapy uses radioactive isotopes (I think), that go directly to the tumor and (hopefully) destroy it. We need to find out a lot more about it, but it sounds like they will want her either in early August (after her 3rd cycle of chemo), or early September (after the 4th cycle). This treatment is expected to last until December, and after that, if all goes well, we may be done with treatment! I believe that she will still have surgery somewhere in there too. Ryan is delaying his start/end work dates again so we will be living here until December, at least.
I will not have my laptop with me in Denver but I will try to update here if I can. If not you can find me on Facebook for shorter updates. With the crazy amount of medical supplies I have to schlep with us, I don't think I will have room for the laptop too.
Just in time
Madeleine came home on antibiotics to finish clearing up the infection that she had that landed us in the hospital. We have spent a nice weekend at home. Her counts are way up so she is free to play with other kids. We even went out to lunch a little bit ago and were very surprised when the waitress said that another family had completely paid for our meal! We don't know who it was, or why (my nearly-bald child is the only reason I can come up with) but we are very grateful. Gotta love Los Alamos!
We are getting ready to go to Denver early tomorrow morning. We are to go directly from the airport to the hospital for a consultation, and then I'm hoping that we will have the rest of the day free. The stem cell harvest will begin on Tuesday and take two to three days, outpatient. The doctors are hoping to get enough stem cells for three "rescues." In the near future her bone marrow will be completely wiped out by high-dose radiation, or chemotherapy, or both. The stem cells that they get this week will then be reintroduced to her body so that she can begin making her own blood cells again.
This week we found out that UCSF wants Madeleine for a special treatment called MIBG Therapy. This is a relatively new treatment for relapsed neuroblastoma and will take the place of standard radiation and bone marrow transplant. Her oncologist has said all along that this would be a very important piece of Madeleine's treatment so we are thrilled that they want her. MIBG therapy uses radioactive isotopes (I think), that go directly to the tumor and (hopefully) destroy it. We need to find out a lot more about it, but it sounds like they will want her either in early August (after her 3rd cycle of chemo), or early September (after the 4th cycle). This treatment is expected to last until December, and after that, if all goes well, we may be done with treatment! I believe that she will still have surgery somewhere in there too. Ryan is delaying his start/end work dates again so we will be living here until December, at least.
I will not have my laptop with me in Denver but I will try to update here if I can. If not you can find me on Facebook for shorter updates. With the crazy amount of medical supplies I have to schlep with us, I don't think I will have room for the laptop too.
Sillies
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| More sillies |
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| The only way to travel with an IV pole. |
Claire enjoys her first food - pickles!
June 30, 2013
Fever
On Thursday we found out that Madeleine's ANC (absolute neutrophil count, essentially white blood cells) were at 0.0. That means that she has NO immune system and cannot fight off any kind of germs. We talked to her about how she has to stay home and that we couldn't have friends over, or go to their houses. Even with these precautions, it is very easy to get something from one of the four other people living in this house. She was very upset about this, and even more upset when friends tried to come over and I had to tell them they couldn't play.
The next morning Madeleine came into our bedroom early, around 6:30am. She said that she wanted to go to the neighbors' house (they have a new trampoline, it is irresistible). We told her no and she went downstairs. When I got up 45 minutes later I assumed she would be on the couch downstairs but I couldn't find her anywhere. I'm sure you can see where this is going. My five-year-old, the one with zero white blood cells, snuck out and went over to the neighbors', who thankfully were awake. After retrieving her we had a big talk about disobeying and needing to stay home. It was hard, however, to really be mad at her. I understand where she was coming from. If she were healthy I would have been a lot angrier. In some ways I applaud her trying to remain a kid and maintain some of that independence. There is so much she can't do right now, and there is so much that this disease takes away from her.
A few hours later she said she felt hot and I took her temperature. She had a fever. After making the requisite phone calls we were sent to the ER and eventually admitted to our local hospital. They started her on antibiotics but she spiked another fever and her oncologists decided they wanted her down in Albuquerque. After seeing how unprepared the local hospital is for oncology kids (or any kids, really) I felt okay with going down there. There was some discussion of going by car - she was stable and her fever was being controlled with Tylenol, but the oncologist on-call (we call her "Dr. Rigid") said absolutely not and we had to go by ambulance. Dr. Neal and Dr. Nichols (pediatricians) got fairly well chastised by the oncologist for even suggesting such a thing. The ambulance ride was uneventful, and we were accompanied by two firefighters who are also paramedics, so even though it was dark out at least there was a view :)
So, she's inpatient again. She's on a couple different IV antibiotics. Her blood culture came back positive which means there is some sort of bacteria or something, maybe an infection in her line. She did not get anything from the neighbors', or any other friends, this kind of infection would have happened anyway. Her fever isn't really an issue anymore, it is very low-grade, if anything. She is receiving a blood transfusion and platelets because all of her blood cells are low. Once you get admitted it's difficult to get out of there. We're hoping she can be discharged tomorrow, but the way things go at the hospital, that is unlikely.
Because of all this, and because her counts are still low, it looks like our Denver trip will have to be rescheduled. I'm disappointed. We were all looking forward to a fun trip and a fun weekend away. We will know more tomorrow when we talk to her primary oncologist, but it is looking more and more likely that we won't be going anywhere on Wednesday. Los Alamos will be doing fireworks here on the 4th for the first time since we've lived here, so now I'm just hoping that she will be out of the hospital and recovered enough that we can at least do that.
The next morning Madeleine came into our bedroom early, around 6:30am. She said that she wanted to go to the neighbors' house (they have a new trampoline, it is irresistible). We told her no and she went downstairs. When I got up 45 minutes later I assumed she would be on the couch downstairs but I couldn't find her anywhere. I'm sure you can see where this is going. My five-year-old, the one with zero white blood cells, snuck out and went over to the neighbors', who thankfully were awake. After retrieving her we had a big talk about disobeying and needing to stay home. It was hard, however, to really be mad at her. I understand where she was coming from. If she were healthy I would have been a lot angrier. In some ways I applaud her trying to remain a kid and maintain some of that independence. There is so much she can't do right now, and there is so much that this disease takes away from her.
A few hours later she said she felt hot and I took her temperature. She had a fever. After making the requisite phone calls we were sent to the ER and eventually admitted to our local hospital. They started her on antibiotics but she spiked another fever and her oncologists decided they wanted her down in Albuquerque. After seeing how unprepared the local hospital is for oncology kids (or any kids, really) I felt okay with going down there. There was some discussion of going by car - she was stable and her fever was being controlled with Tylenol, but the oncologist on-call (we call her "Dr. Rigid") said absolutely not and we had to go by ambulance. Dr. Neal and Dr. Nichols (pediatricians) got fairly well chastised by the oncologist for even suggesting such a thing. The ambulance ride was uneventful, and we were accompanied by two firefighters who are also paramedics, so even though it was dark out at least there was a view :)
So, she's inpatient again. She's on a couple different IV antibiotics. Her blood culture came back positive which means there is some sort of bacteria or something, maybe an infection in her line. She did not get anything from the neighbors', or any other friends, this kind of infection would have happened anyway. Her fever isn't really an issue anymore, it is very low-grade, if anything. She is receiving a blood transfusion and platelets because all of her blood cells are low. Once you get admitted it's difficult to get out of there. We're hoping she can be discharged tomorrow, but the way things go at the hospital, that is unlikely.
Because of all this, and because her counts are still low, it looks like our Denver trip will have to be rescheduled. I'm disappointed. We were all looking forward to a fun trip and a fun weekend away. We will know more tomorrow when we talk to her primary oncologist, but it is looking more and more likely that we won't be going anywhere on Wednesday. Los Alamos will be doing fireworks here on the 4th for the first time since we've lived here, so now I'm just hoping that she will be out of the hospital and recovered enough that we can at least do that.
June 26, 2013
Recovering
Madeleine spent five days in the hospital during this last cycle of chemo. We have been home for a few days and are starting to see some progress on how she is feeling. She is still pretty nauseous, but as long as we keep up with the anti-nausea medicine she seems to be feeling okay. Yesterday was her first mostly good day and we took advantage of that to get out of the house a bit. Mad and I went to her school to try to register her for Kindergarten but the office was closed. We ended up going to visit her best buddy, Sophie, instead. It was so good to see her out of the house and feeling okay! Later we took Laurel over to preschool to sign her up for the Fall. Madeleine got to see her teacher, Ms. Secilli, and this, along with visiting with Sophie, was the highlight of her day!
Madeleine's counts were good on Monday but are expected to drop. She has more labs to be done tomorrow, so we'll see where she is then.
I'm signing the girls up for school because we still have no idea when we are leaving. Before all of this happened we were supposed to be moving to Florida on June 1st for Ryan's new job. Obviously this did not happen. At some point we will have to transfer Madeleine's care to Florida, but for now we are staying here. Both jobs have been incredibly supportive in regards to moving back the end and start dates.
We are still working with insurance as far as paying for our Denver trip. It looks like there are some good benefits, we just have to make sure that the facilities are part of their network and that we can get approved for them. Dealing with insurance is such a pain.
Madeleine's counts were good on Monday but are expected to drop. She has more labs to be done tomorrow, so we'll see where she is then.
I'm signing the girls up for school because we still have no idea when we are leaving. Before all of this happened we were supposed to be moving to Florida on June 1st for Ryan's new job. Obviously this did not happen. At some point we will have to transfer Madeleine's care to Florida, but for now we are staying here. Both jobs have been incredibly supportive in regards to moving back the end and start dates.
We are still working with insurance as far as paying for our Denver trip. It looks like there are some good benefits, we just have to make sure that the facilities are part of their network and that we can get approved for them. Dealing with insurance is such a pain.
June 19, 2013
Cycle #2
It was so nice to have Madeleine at home over the weekend. She was feeling good, better than she's felt in the past 5 weeks. She was able to play games, interact with her sisters, joke around, visit with friends, and even meet and visit with our new neighbors. Her new accessories (broviac line and G-tube) require care and maintenance but I think we've got the hang of it.
Madeleine and I came back to the hospital yesterday for admission for chemo cycle #2. This cycle uses two of the same drugs from the previous cycle and one new one. Vincristine/cyclophosphamide/topotecan. It will take four days, with perhaps a day or two of hydration and then we can hope to be home again.
I spoke with her doctor yesterday and she is thrilled with the results from the first cycle. In two measurements of different parts of the tumor it reduced by 47% (thoracic prevertebral mass), and 62% (retroperitoneal component)! The craniocaudal (that means head to foot, and that is your medical word of the day) measurement has decreased from 16.3 cm to 11.9 cm and from 12.4 cm to 7.3 cm.
Mad had a good visit with a couple of friends yesterday. Chemo started last night and she is really feeling the effects of it today. I'm glad she was able to have such a good time yesterday and that there are no visitors scheduled for today.
Insurance has approved our trip to Denver for the stem cell harvest. It looks as though that may happen over two dates: one for a consultation and one for the actual procedure, which can take 1-3 days. Pretty silly that we will have to fly up there for a consultation, but whatever. The tentative dates are July 3rd and then the harvest on July 8th. If the July 3rd date sticks I'm hoping to be able to stay for some fireworks, I know Mad would love that. We don't have fireworks on the 4th here because of all of the fires and fire restrictions. The social worker was talking about possibly sending all five of us to Denver on the 3rd and making a weekend trip out of it. She is seeing what insurance will pay for as far as flights and lodging. It would be nice to have everyone all together, and it will be great to be able to see friends in that area (Campbell and Gattiker families I'm talking about you!). I guess we'll see what insurance will pay for, and what we decide to do.
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