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.
June 30, 2013
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.
June 11, 2013
Shrinking
Things have gone very well over the last few days. It is so nice to see Madeleine laughing and interacting with other people. Her counts have pretty much recovered and she is off of all medicine except for her blood pressure meds and the nutritional support (TPN) that she gets through her line.
She had a CT scan done yesterday because her doctor wanted to know if the chemo was having any effect on the tumor. I was pretty sure that I did not want to hear the results of the scan. We've had nothing but bad news for nearly a month and I couldn't face more of it. When I asked one of the doctors what the results were this morning he said that he didn't know yet but that he wasn't expecting too much change since it had only been one cycle of chemo and normally they don't even image until after two cycles. He did say that he was very pleased with her clinically - she is walking well (if not far, yet), she is peeing on her own without residual, her appetite is somewhat back, and her counts recovered quickly. I ran into him later in the hallway and he told me that he was very happy with her scan and that it showed that the tumor is shrinking! I don't know how much it is shrinking yet because we don't have the final report with the measurements and all that but he said that it appears that it is coming off the renal arteries, and shrinking in size. Also, the fluid in her lung is less than what it was on the last x-ray. This is great news!!
We just signed the consent for cycles 2 &3 of chemo. These cycles shouldn't be as difficult as the first one was. Once she has recovered from cycle 2 we will go to Denver (pending insurance authorization) for a stem cell harvest. This is a process where they will extract her healthy stem cells from her blood, and then freeze them. The extraction is not painful, and they will most likely use her broviac line. Somewhere down the line she will get an extremely high dose of chemo that will wipe out her bone marrow. The harvested stem cells will then be put back into her so that she can continue to make blood cells and platelets. This type of stem cell transplant is easier to endure since it is using her own stem cells rather than those from a donor.
On Thursday Madeleine will have a surgery to have a G-tube placed. This will allow her to "eat" even when she can't or won't. The current nutritional "food" that she is on cannot be used for more than a few weeks. This will be better anyway since the TPN typically has to run 24 hours (meaning carrying around a pump constantly), and with the G-tube we may be able to only run it at night while she is sleeping. She can still eat normally when she feels like it. So, they are slowly weaning her off of the TPN and we are trying to increase the foods that she eats by mouth. Yesterday she ate 6 sushi (veggie) rolls as well as some other things.
Another awesome thing is that we may be coming home soon! Of course, we have to come back on Monday or Tuesday for cycle #2, but a weekend at home, together, would be amazing.
One of the perks of being a cancer kid (ha) is that Madeleine gets to have a wish granted through the Make a Wish foundation. Originally she discussed wanting to go on a Disney Cruise. However because she is not currently able to travel (the fluid in the lung thing means no air travel - although hopefully that is resolving itself) we spoke with her about doing something locally. Our social worker gave us some possibilities and Madeleine has chosen to have an awesome playhouse built in the backyard complete with trampoline and zip line. Apparently this can be built at any time we just need to pick a date.
It's hard not to feel optimistic when we have received such great news. Everything I said in the last post is still true, and she still has a huge uphill battle to fight to get rid of this thing. It is nice, however, to feel like we are winning the first fight.
With her new wig.
She had a CT scan done yesterday because her doctor wanted to know if the chemo was having any effect on the tumor. I was pretty sure that I did not want to hear the results of the scan. We've had nothing but bad news for nearly a month and I couldn't face more of it. When I asked one of the doctors what the results were this morning he said that he didn't know yet but that he wasn't expecting too much change since it had only been one cycle of chemo and normally they don't even image until after two cycles. He did say that he was very pleased with her clinically - she is walking well (if not far, yet), she is peeing on her own without residual, her appetite is somewhat back, and her counts recovered quickly. I ran into him later in the hallway and he told me that he was very happy with her scan and that it showed that the tumor is shrinking! I don't know how much it is shrinking yet because we don't have the final report with the measurements and all that but he said that it appears that it is coming off the renal arteries, and shrinking in size. Also, the fluid in her lung is less than what it was on the last x-ray. This is great news!!
We just signed the consent for cycles 2 &3 of chemo. These cycles shouldn't be as difficult as the first one was. Once she has recovered from cycle 2 we will go to Denver (pending insurance authorization) for a stem cell harvest. This is a process where they will extract her healthy stem cells from her blood, and then freeze them. The extraction is not painful, and they will most likely use her broviac line. Somewhere down the line she will get an extremely high dose of chemo that will wipe out her bone marrow. The harvested stem cells will then be put back into her so that she can continue to make blood cells and platelets. This type of stem cell transplant is easier to endure since it is using her own stem cells rather than those from a donor.
On Thursday Madeleine will have a surgery to have a G-tube placed. This will allow her to "eat" even when she can't or won't. The current nutritional "food" that she is on cannot be used for more than a few weeks. This will be better anyway since the TPN typically has to run 24 hours (meaning carrying around a pump constantly), and with the G-tube we may be able to only run it at night while she is sleeping. She can still eat normally when she feels like it. So, they are slowly weaning her off of the TPN and we are trying to increase the foods that she eats by mouth. Yesterday she ate 6 sushi (veggie) rolls as well as some other things.
Another awesome thing is that we may be coming home soon! Of course, we have to come back on Monday or Tuesday for cycle #2, but a weekend at home, together, would be amazing.
One of the perks of being a cancer kid (ha) is that Madeleine gets to have a wish granted through the Make a Wish foundation. Originally she discussed wanting to go on a Disney Cruise. However because she is not currently able to travel (the fluid in the lung thing means no air travel - although hopefully that is resolving itself) we spoke with her about doing something locally. Our social worker gave us some possibilities and Madeleine has chosen to have an awesome playhouse built in the backyard complete with trampoline and zip line. Apparently this can be built at any time we just need to pick a date.
It's hard not to feel optimistic when we have received such great news. Everything I said in the last post is still true, and she still has a huge uphill battle to fight to get rid of this thing. It is nice, however, to feel like we are winning the first fight.
June 8, 2013
Relapse
I am assuming that everyone that reads this already knows what is happening. I will not pretend that I have some "audience" out there that has been waiting 2.5 years since my last post here for an update.
We had a good run there. I didn't update for years because there was nothing to update. I had the same complaints, worries, and concerns as every other mother out there, and that was nice. It was nice to not have cancer be a part of our everyday lives.
However, here we are again. As of this post Madeleine has been inpatient at UNM for 25 days. Early this year we learned that the tumor was growing. A biopsy told us that it was 99% ganglioneuroma (the benign form of neuroblastoma). We celebrated. Madeleine had to have surgery to remove some of the tumor that was compressing her nerves and causing her pain and weakness. After the surgery we celebrated again, thinking that this was the last surgery, the last hurdle. Six weeks after the surgery things started to go bad. The pain returned, Madeleine had no appetite and was losing weight, and she couldn't walk more than a few feet without crying. An MRI showed that the tumor had been growing aggressively. It was given a label: Relapsed neuroblastoma, stage IV.
There is disease in her knees and in her bone marrow as well as the primary tumor that has grown up her spine and into her chest cavity. The tumor is encasing her renal arteries and aorta causing her blood pressure to be very high (this is now under control with medicine). There is involvement in her left lung, and perhaps her bladder may be somewhat compromised as well. There was also a spot on her pelvis which was surgically removed and biopsied.
Madeleine is now recovering from some high-dose chemotherapy (doxorubicin, vincristine, and cyclophosphamide for those that have asked) - her oncologist went off-protocol and started her on what would normally be cycle #4 of chemo to attack this thing as fast as possible. Her white blood cells are slowly rising.
A few days ago it was discovered that she had fluid in her left lung, and it was drained after she started having some respiratory distress. The fluid is blood and neuroblastoma cells. The tumor has invaded her lung and is causing a bleed. Subsequent chest x-rays show that the fluid continues to accumulate - although possibly not as fast as it did previously. This is currently the most serious and pressing issue. We will speak with the surgeon hopefully this weekend to see if anything can be done surgically.
Madeleine's chances of surviving this thing are not good. Stage IV relapsed neuroblastoma offers a very poor prognosis, coupled with this bleed in her lung is even worse. She has perhaps a 25% percent chance, but that number is pretty nebulous as this is an extremely unique tumor (or so we are told over and over again). This has all happened so fast.
She will not, unfortunately, be leaving the hospital any time soon. If the lung can be stabilized then we will remain inpatient through the next round of chemo which is coming up fast. After that the plan is to get her to Denver for a stem cell harvest. They don't do this at UNM. All of this also sort of depends on the results of an MRI that I believe she will have next week. If the tumor has continued to grow in spite of the intense chemo than it may be best to stop treatment altogether.
For now, Madeleine's appetite has returned and she no longer has any nausea. She is smiling and joking and sort of back to her old self. For today, we will hang on to this. We can only take this thing one day at a time.
We had a good run there. I didn't update for years because there was nothing to update. I had the same complaints, worries, and concerns as every other mother out there, and that was nice. It was nice to not have cancer be a part of our everyday lives.
However, here we are again. As of this post Madeleine has been inpatient at UNM for 25 days. Early this year we learned that the tumor was growing. A biopsy told us that it was 99% ganglioneuroma (the benign form of neuroblastoma). We celebrated. Madeleine had to have surgery to remove some of the tumor that was compressing her nerves and causing her pain and weakness. After the surgery we celebrated again, thinking that this was the last surgery, the last hurdle. Six weeks after the surgery things started to go bad. The pain returned, Madeleine had no appetite and was losing weight, and she couldn't walk more than a few feet without crying. An MRI showed that the tumor had been growing aggressively. It was given a label: Relapsed neuroblastoma, stage IV.
There is disease in her knees and in her bone marrow as well as the primary tumor that has grown up her spine and into her chest cavity. The tumor is encasing her renal arteries and aorta causing her blood pressure to be very high (this is now under control with medicine). There is involvement in her left lung, and perhaps her bladder may be somewhat compromised as well. There was also a spot on her pelvis which was surgically removed and biopsied.
Madeleine is now recovering from some high-dose chemotherapy (doxorubicin, vincristine, and cyclophosphamide for those that have asked) - her oncologist went off-protocol and started her on what would normally be cycle #4 of chemo to attack this thing as fast as possible. Her white blood cells are slowly rising.
A few days ago it was discovered that she had fluid in her left lung, and it was drained after she started having some respiratory distress. The fluid is blood and neuroblastoma cells. The tumor has invaded her lung and is causing a bleed. Subsequent chest x-rays show that the fluid continues to accumulate - although possibly not as fast as it did previously. This is currently the most serious and pressing issue. We will speak with the surgeon hopefully this weekend to see if anything can be done surgically.
Madeleine's chances of surviving this thing are not good. Stage IV relapsed neuroblastoma offers a very poor prognosis, coupled with this bleed in her lung is even worse. She has perhaps a 25% percent chance, but that number is pretty nebulous as this is an extremely unique tumor (or so we are told over and over again). This has all happened so fast.
She will not, unfortunately, be leaving the hospital any time soon. If the lung can be stabilized then we will remain inpatient through the next round of chemo which is coming up fast. After that the plan is to get her to Denver for a stem cell harvest. They don't do this at UNM. All of this also sort of depends on the results of an MRI that I believe she will have next week. If the tumor has continued to grow in spite of the intense chemo than it may be best to stop treatment altogether.
For now, Madeleine's appetite has returned and she no longer has any nausea. She is smiling and joking and sort of back to her old self. For today, we will hang on to this. We can only take this thing one day at a time.
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