Mad Madam Madeleine

Peace

noreply@blogger.com (Amber) — Sun, 15 Jun 2014 21:57:00 +0000

Madeleine passed away yesterday afternoon. She is finally at peace. She fought so hard, and her body was done. In the end, she was done too. We talked about death, she knew it was coming. She knew that it would be an end to the pain and suffering. A couple hours before she passed she asked us, "how do I die?" I know that she was ready. We were all able to say our goodbyes and our I love yous. When she died Ryan was playing music on the ukelele, and singing to her. I know she liked it.

We are very sad. Even though we have done a lot of grieving throughout this whole process, it's still inconceivable that this has happened. But there is also relief. I know she was miserable during these last few days. I'm so glad that her suffering is over. I'm glad to be done with all the medicine, the oxygen tanks, the feeding supplies, and the worry. The worst has happened and I'm no longer afraid.

Dr. Butros (her oncologist extraordinaire in New Mexico), once told us that she thinks there is hope in death. I didn't understand that (outside of a religious context) until now. There is hope in a life that was loved, there is hope in a spirit that remains with us, and there is hope in being at peace.

Mad Madam Madeleine

noreply@blogger.com (Amber) — Wed, 21 May 2014 18:58:00 +0000

We've had a couple more weeks in the hospital, in Jacksonville, and in Atlanta. Every time we go for a consultation or clinic visit we end up in the hospital for a week. I don't want to go into all the details, but Madeleine's health is rapidly declining. We, with the support and urging of her doctors, have brought her home and she is currently on hospice care. This is not a decision that was easily made, but it's also the only decision that we have left. We have simply run out of options.

Off again

noreply@blogger.com (Amber) — Tue, 29 Apr 2014 23:54:00 +0000

We made it four months without any hospital admissions. That's a new record. Getting used to a whole new hospital is difficult. It takes awhile to know where everything is, to get the routines down, get to know the nurses and doctors on the floor. Madeleine and I have been inpatient in Jacksonville since yesterday and I find myself missing the hospital in Albuquerque. That's crazy, I know, but there is comfort in familiarity. Trying to find a cup of coffee, or a straw, or a quiet place is difficult when you don't know where anything is. If I was to build the ideal hospital (based only on my standards - who cares about all that other stuff!) I would take the food from UC San Francisco (you could call and order just about anything you wanted at anytime and it was GOOD), the playroom, child life specialists, and Cancer Fund from Albuquerque (Madeleine keeps saying she wants to send the Jacksonville team to Albuquerque so that they can see what a real playroom looks like), and the efficiency of care from Jacksonville, and voila, perfect hospital.

Madeleine's chemo stopped working. In fact all the gains that were made with the first couple rounds of chemo have been reversed. She has pain in her leg again and is back on strong pain meds. Her CT revealed that the pleural effusion that we were watching was markedly worse, and the pseudo-cyst in her abdomen has also increased. We were admitted so that the lungs could be drained, and that was done in the OR today. Even though she didn't have any symptoms related to the fluid in her lungs (cough, low O2 sats, etc), she seems to be feeling a lot better overall since the fluid was drained. Even the pain in her leg seems better. They will do another chest X-ray tomorrow to see if the fluid is accumulating again. Tomorrow she has another scan, and on Thursday the GI doctor will drain the cyst in her abdomen. We are hoping to go home on Thursday.

On Monday we have a consultation in Atlanta with the neuroblastoma specialist there to find out what her next treatment will be. At this point it is about giving her quality of life for as long as we can. There are no cures for this disease.

March

noreply@blogger.com (Amber) — Wed, 19 Mar 2014 23:45:00 +0000

Madeleine and I are in Jacksonville again for our week of chemo. This two weeks off, one week on, schedule is exhausting. She had scans today, and we got good results. The tumor in her chest shrank by approximately 20% (I don't have the report yet, so this is an estimate), and the node that was in her lung has disappeared completely, yeah! Also, her knees were never imaged, but we're pretty sure that she had disease again there, and the way that she is walking, dancing, skipping, running...we're pretty sure that is gone as well. Excellent news!

Two strange things did show up on the scans. The first is that there is fluid build-up in her left lung. This happened after her initial relapse too, and it eventually had to be drained. Her breath sounds are fine and she is having no problems with shortness of breath or anything like that. We'll get a chest x-ray tomorrow for a closer look, but it's probably something to just watch for now. The second thing is that there appears to be a fluid filled cyst in her stomach. It was present on the last set of scans but just barely, so it is growing. Our doctor said it looked benign on the scans, so again it is something to watch for now.

Madeleine is having no pain - we've stopped all the pain meds and removed the fentanyl patch that she was on previously. Her energy is great, her appetite is awesome, and she is really happy. She is a different kid. We haven't seen her looking and feeling this good in a long time. I'm so happy that she is doing so well.

The chemo drugs that she is on are not really expected to be curative. They may work for some time, and then the tumor will adjust and they will stop working. We are going to meet (yet another) neuroblastoma specialist in Atlanta so that we can put together a solid plan b for when (if) these drugs stop working.

Things looked so bad a few weeks ago, and we are so happy that she has responded well to these drugs and that she is able to have this time.

With Reed, the resident Ronald McDonald House dog.

"Mountain Laurel"

Second round

noreply@blogger.com (Amber) — Tue, 25 Feb 2014 03:16:00 +0000

Today is day one of the second round of chemo....that almost makes it sound like she's only had two rounds of chemo, ha! Today is day one of the second round of the latest chemo. Recovery from the last round was a bit rough. There was a lot of vomiting, diarrhea (a major side effect of the new drugs) and a whole lot of not eating. But then, one day about a week ago she decided she was done with all that and has been feeling really good ever since. Her appetite is incredible. She reminds me of a pregnant woman with her many food cravings that come and go. Her latest kick is quiche. I've made three quiches in the last few days and Madeleine has eaten 80% of them. She talked about quiche so much today in clinic that one of the nurses said that she would make her a quiche for tomorrow. Now, that's an awesome nurse!

We think that the new chemo is having some effect because of how well Madeleine is feeling. Once she recovers from this round they will do scans and see what is going on. With the knowledge that we have now from the most recent scans before chemo started, the surgery that I mentioned last time is not possible. She has evidence of further metastatic disease, which rules out surgery. We are hoping that chemo is taking care of that and that surgery can be an option again.

Madeleine gained a wheelchair during our last visit to Jacksonville. This is something she's probably needed for the last couple of months since we have been carrying her everywhere. She actually likes her new chair and it's been a huge help to have it at school. She can get around okay in the classroom, but walking long distances - her school is huge - is exhausting. She also sometimes has pain in her knees. Her teacher has been awesome about pushing her around the school.

Claire celebrated her first birthday at the beach! She didn't think much of the sand, or the water, but she'll get used to it. It's truly hard to believe that she is one. The last year has been so awful, and stressful, and just chaotic. Claire's birth was one little bright spot, and then I just don't know where the rest of the year went. Claire was three months old when Madeleine relapsed, and she essentially spent her infancy in the hospital. Her crib in the hospital, until she could sit up, was one of those little red wagons that you pull kids around in. We put some blankets in there and wheeled it right up next to the parent bed and that is where she slept while Madeleine was in the hospital.

Laurel is doing great! She is happy at her new school and her gymnastics lessons. She is full of energy, and full of life. Here she is riding a horse at a preschool friend's birthday party.

And that is how you eat an oyster! Madeleine did not think much of raw oysters, but I'm impressed that she tried it.

A New Plan

noreply@blogger.com (Amber) — Sat, 01 Feb 2014 15:32:00 +0000

Madeleine's San Francisco doctor still wants to explore the option of surgically removing as much as the tumor as we can. Her reasoning is that the MIBG therapy got rid of the metastatic portion of the disease - that is the part in her bone marrow, and some of the other outlying parts. The words that were used to describe this possible surgery were "bold," "heroic," and "cowboy." This would not be a slam-dunk, and they would not be able to remove all of the tumor. The idea is that the bits that are left would be taken care of with a stem cell transplant sometime after the surgery. The surgeons (here in Jacksonville, and in San Francisco), have said that they would do it. We haven't talked to them yet, but recovery from something like this would be long, and difficult.

Because of the amount of time needed for recovery, they wouldn't be able to treat Madeleine for a little while after the surgery. The fear is that the disease would again enter the bone marrow while we were waiting. The plan, as of now, is that Madeleine will start a new chemo combination on Monday in the hopes that it will stop growth, and possibly even shrink the tumor a little to better prepare her for surgery. It is reassuring to know that San Francisco and our local doctor both came up with this plan independently. It doesn't sound like this chemo is anywhere near as intense as what she has had before. She will have chemo Monday through Friday of this week, and then take the next two weeks off to recover. They would do the cycle one more time and then reassess. The chemo is being given outpatient, so we don't have to be admitted, but it is IV, so we have to be at the hospital every day. Madeleine and I are going to Jacksonville on Monday and we will stay at the Ronald McDonald house there (hopefully, if they have a room for us) until Friday. Madeleine's grandparents, Nana and Pop Pop, are coming to watch Laurel and Claire so that Ryan can go to work. We are so grateful for our families who will travel anywhere with very little notice.

I'll try to update sometime mid-week, but I don't know what the internet connection will be like where we are staying.

MRI

noreply@blogger.com (Amber) — Mon, 27 Jan 2014 02:19:00 +0000

When Madeleine was (re)diagnosed eight months ago, and things were very bleak, and very sad, we had an extremely difficult discussion with her oncologist and our social worker, Jessica. We were told about Madeleine's prognosis, the unlikelihood of her surviving this. We discussed her treatment plan, but we also discussed hospice care, in case we didn't want to go through with trying to treat her. After all, the treatment plan was rough. The prognosis was poor. The chemo was intense. It was a lot of suffering, for maybe no payoff in the end. There were a lot of tears (mine, mostly), and a lot of questions (Ryan's, mostly). Obviously we chose to treat her. Somewhere in this discussion (and the point I'm trying to get to) Jessica said to remember that we only have this moment. Right here. This moment. The past is gone, and the future is unpredictable. All we have is the present. And we have to live in that present with Madeleine and her sisters. Even when things look bleak, and sad, and scary.

The MRI results are not good. It shows significant tumor growth in spite of the MIBG treatment. We don't have clear results yet because the tumor extends beyond where the MRI was taken. We don't know yet how much it has regrown. It is, however, around her aorta, and her renal arteries, again, causing her blood pressure to be high. This also explains all the pain she has been having. There is some question about how clear these images actually are because I guess she was moving around a bit during the scan, but with the symptoms that she has been having (high blood pressure, pain, no appetite) it seems pretty obvious that these results are accurate. There is still a little hope that Dr. Matthay in San Francisco will see something different in this scan, but I doubt it.

We are still waiting for pathology on her bone marrow, but her marrow may actually be clear of disease. This is good. The MIBG scan did not show any new spots lighting up....which means, coupled with the MRI, that the tumor has evolved. This is bad. It is no longer MIBG avid. The MIBG therapy did what it was supposed to do and killed off a lot of the tumor that responded to that radioactive isotope. However, the tumor changed and while still neuroblastoma, is no longer MIBG avid. I don't think anyone was expecting this to happen. Our oncologist said that she was shocked when she heard the MRI results because she was expecting something more in line with the bone marrow and MIBG scan results. We are waiting for a CT and PET scan to be scheduled which will give us a definitive answer to the MRI.

Surgery, stem cell transplant, and immunotherapy are no longer options with disease progression like this. The doctors are looking into phase 1 trials that Madeleine may be a candidate for. I know that miracles happen, but phase 1 trials seem like a last ditch effort. Basically they are looking at mostly untested research options that may or may not have any effect at all.

I don't know what else to say. The reality of this is crushing.

Florida

noreply@blogger.com (Amber) — Fri, 10 Jan 2014 01:02:00 +0000

Wow. So it's been awhile!

We celebrated Christmas at home in Los Alamos with the girls' grandparents.

We also had Christmas dinner with our friends, the Coopers. They left that night on a trip so it was our last chance to see them before we moved. It was difficult saying goodbye to good friends.

Madeleine was hospitalized for fever right before and right after Christmas. We were actually lucky that she was home for Christmas. The mysterious leg pain that she had right before the second MIBG treatment returned a couple days before the holiday, and has been bothering her since then. The pain travels from her leg to her chest and back. By now the pain in her leg seems better, but the chest and back is still pretty bad. Some days are better than others, I guess. It's hard to decide if it's getting better or worse. Medicine only sort of works and none of us have had a good stretch of sleep in weeks.

Because of the fevers that Madeleine had been having (she hasn't had a fever since her last hospitalization), her doctors insisted that she fly to Tallahassee, instead of drive as we had planned. So, Madeleine, Claire and I flew, and Ryan, Laurel, Bacon (dog), and Gidget (cat) drove the 1500 or so miles.

We are now in our new rental house and are somewhat settling in to life in Florida. It's hard to actually do anything because Madeleine's pain keeps us mostly home-bound. On Monday we drove to Jacksonville, 2.5 hours from Tallahassee, to meet with her new oncologist. Of all of the hospitals that we have been involved with - I think the current count is up to five - Nemours Clinic and Wolfson Children's hospital may be the nicest in terms of the building and the location. It is right on the Atlantic. We like the new doctor and are glad to know that they are able to do stem cell transplants and immunotherapy right there. Hopefully we will not have to travel to San Francisco anymore. All of her scans and tests are being done this week and next. This pain is very concerning, especially since it is in all of the sites where she previously had rapid tumor growth. We will know more once we see the results of her scans.

Madeleine hasn't been able to go to school yet, but I checked out a place for preschool for Laurel that is across the street from Madeleine's elementary school. I will be signing Laurel up to start next week.

MIBG done

noreply@blogger.com (Amber) — Sat, 30 Nov 2013 02:17:00 +0000

Sorry for the delayed update...
The MIBG treatment went as well as can be expected. It was very similar to last time in terms of the side-effects. Madeleine was discharged two days before Thanksgiving and my Dad came to pick us up and take us to their house for Thanksgiving. They did an MIBG scan before she was released and there is NO new growth of tumor. Her symptoms (pain and high blood pressure) are so similar to when she relapsed that we were really scared that it had grown rapidly. The bad news is that we still don't have an answer as to why she is having pain in her left leg, and high blood pressure. The pain has gotten a lot better, but she is still requiring a couple doses of tylenol with hydrocodone a day. It also seems like it has been a little harder for her to recover this time. She still has no appetite, and continues to have nausea and vomiting, so it's hard to feed her through her G-tube. She has lost about three pounds, weight she cannot afford to lose, so we are working hard to get that weight back up. I think she is starting to feel a little better. I'm hopeful that she will be able to go to school on Monday, even if it is just for a little bit.

We had a nice Thanksgiving with my family, and flew back home today (Friday). Madeleine and I will fly back to San Francisco on Thursday for the stem cell infusion. Hopefully we will be back home on Saturday.

Ryan's parents have been taking care of Laurel and Claire at their house, and after two weeks of being away from them I am ready to see my little ones!

San Francisco x 2

noreply@blogger.com (Amber) — Fri, 22 Nov 2013 05:41:00 +0000

Here we are in San Francisco again. Madeleine began her inpatient stay at the hospital today. She isn't in isolation yet, that starts tomorrow with the MIBG infusion. Today was the Foley catheter placement and that went very well.

A couple days before we left for San Francisco Madeleine suddenly started having pain in her leg. The pain is very reminiscent of the pain she was having before her (re)diagnosis six months ago. It was also discovered at her clinic visit when we got here that her blood pressure is high again. She is back on Amlodipine, and that is helping to lower her pressures, but we don't know yet what is making it go up. Her scans from three weeks ago show improvement, and her doctor here thinks it's unlikely that the tumor would have grown that fast. But with Madeleine, and with this disease, nothing is unlikely. The pain has also been getting better, and she has needed less pain meds in the last couple of days. No one can figure out what any of this means yet. She is scheduled for an MIBG on Tuesday (standard procedure after the treatment), so perhaps we will see something then. Until then we have mind-numbing hospital days of waiting and wondering.

Happy 6th birthday!

noreply@blogger.com (Amber) — Thu, 14 Nov 2013 17:41:00 +0000

We celebrated Madeleine's sixth birthday earlier this month. Lately she is into pretending to be a spy, or a detective, and so she asked for a detective birthday party. When the party guests arrived they had to create a detective ID badge with two randomly assigned words (Quacking Duck, Blue Lizard, Silent Pickle, etc), and their fingerprint. Once all of the ID badges were in place they started the "mystery" part of the party by popping balloons to reveal the secret clue. This led them to various places inside and outside of the house with clues that revealed the next location. We were hoping this would take them awhile, but they really flew through the clues.

One of the clues was hidden in the bathtub.

This was the "laser" hallway they had to go through to get to one of the clue locations. It was a little too easy!

After all the clues they found their goody bags - more detective gear!

Blue Lizard was a reluctant model spy.

My little Laurel

More spy friends!

Present opening (brag: I built all of the furniture in this picture! The patio table and the bench and chair in the background).

Cake time! The cake is supposed to be a magnifying glass.

The highlight of Madeleine's birthday was the fabulous gift from The Children's Cancer Fund of New Mexico. They asked her what she wanted, probably expecting to hear about a My Little Pony, or Barbie or something...nope! She asked for, and received, a zip line!

The kids (and friends), have been using the zip line every day after school. It's a big hit!

I just had to throw this in here because it's cute. This was Laurel's first time on roller skates and she did very well. She did get tired towards the end and opted to be pushed around on the cart. They can't wait to go back!

We return to San Francisco on Tuesday of next week. Dr. Matthay (the San Francisco doctor) was very pleased with the results of the scans and thinks that Madeleine will benefit from another MIBG therapy. Hopefully she will be out of the hospital by Thanksgiving so that we can spend the holiday with my family. We will be split up, Nana and Pop pop are coming to watch Laurel and Claire at our house, and then take them to Tucson for Thanksgiving. We will fly back home the day after Thanksgiving (hopefully), and then Mad and I will fly back to San Francisco a week later for the stem cell infusion. A lot of travel, but this way I won't be separated from the little ones for three weeks.

That's the latest!

Hope

noreply@blogger.com (Amber) — Tue, 05 Nov 2013 16:46:00 +0000

Hope is a dangerous thing. It feels difficult to let myself be hopeful; as if giving in to hope means further devastation down the road. I have this sense of relief over the last few days. I hadn't realized just how much I was holding my breath, waiting for the results of all the scans Mad had. And we got good results. Not spectacular, but good, heading in the right direction, positive. I should be joyful, I should be relieved, and I am those things, but there is also this sense that I can't let my guard down. I can't ever let my guard down. I can't ever relax about this. Shortly after Madeleine had a big surgery last winter, when things really started to go wrong (but we didn't know it then) I got a call from her doctor to ask if I wanted them to do a post-op MRI. I don't know why this was my decision, it's never been my decision before, but she was debating about doing one because Madeleine appeared to be doing so well. She had recovered well from surgery, she had good strength, a decent appetite. It seemed that the surgery was successful, that the tumor had been debulked, the biopsy came back negative (which is one of the craziest parts of this whole story. If only they had biopsied a second site as originally planned...). Everything was going well. And I said No. I didn't think another MRI was necessary. I didn't want to drive to Albuquerque. I said no. I let my guard down. I chose to believe that everything was fine. I know this isn't my fault, but I can't help the "what-ifs."

The CT, MIBG, and MRI scans all show that the tumor has decreased. The MIBG actually is more avid (avidity = active tumor), in one spot, the original tumor in her lower spine. That is a strange result, and no one is sure why that has happened. Her bone marrow shows trace amounts of disease. before it was around 5%, and now we are closer to zero. So, a much better result, but still not the all-clear that we were hoping for. The part of the tumor that had grown up her spine into her chest and near her heart may be completely gone. There is one spot in her thorax that appears calcified, and if that is the case then it is dead tissue. Her VMA/HVA are now at the level that they were a year ago. They are in the mid-20's. In May, when she relapsed, they were over 100. At this point the tumor may be at the size that it was a year ago. Essentially we are at the point where we were a year ago, when everything was fine. Except (and this is a big except), we now know that this tumor is not stable, also except she has had a ton of scary drugs to kill this thing. Nevertheless we are pleased with the results of the MIBG treatment. Our lives are now in the hands of UCSF who will be receiving all of her scans today and deciding what the next treatment will be. They may want us there as early as next week.

Make a Wish - final days

noreply@blogger.com (Amber) — Wed, 16 Oct 2013 15:37:00 +0000

On the last couple days of our trip we visited Sea World, Animal Kingdom, and then spent the last half day at Magic Kingdom - again. The highlight of Sea World was the dolphins. Wish Kids and families get a free tray of fish to feed the dolphins. I've never touched, or been that close to a dolphin before, and it was truly one of the highlights of the trip. What amazing creatures!

It's hard to take a bad photo of a dolphin!

We were instructed to touch the dolphin on the chin and then drop the fish in. At one point one of the trainers had the dolphin lie on the side and we could pet the dolphin. What a cool experience this was!

Back at the Village: Ice cream for breakfast!

Later that night we went to the town of Celebration, FL for dinner. Celebration is a master planned community, and while it does have a rather Stepford Wives quality to it, it is very clean, and very nice. We went in search of Madeleine's favorite food, sushi!

And sushi we ate!

Later back in our villa, we surprised the girls with a visit and tuck-in service from Mayor Clayton! They were so surprised when he knocked on our door.

Mayor Clayton is in his pajamas too!

The next morning a couple Disney characters visited the Village. This was so nice, to see the characters right in the Village instead of having to search them out and wait in long lines in the parks. Mickey was very impressed with Laurel's light up shoes.

On our final day we visited Animal Kingdom. We took a tram ride through Africa and got to see a lot of African animals. I will spare you all the pictures :)

If you look closely you can see that there is a man in this bamboo costume.

After a morning of Animal Kingdom, Madeleine wanted to head back to Magic Kingdom for one last evening. I think we spent 2.5 days at Magic Kingdom, but that's okay, it was her favorite place.

We left Magic Kingdom in the early evening because we had to be up super early for our flight the next morning. AND because it was Halloween at Give Kids the World. They didn't want to miss any trick or treating opportunities. This is a picture of Laurel with a fortune teller. I love the look on Laurel's face - so serious.

And that finally wraps up our trip! We had such an amazing experience. Everything was truly magical, and this really was the trip of a lifetime. Even if we went back to Disney World for a week it would never be the same. We are so, so thankful to Make A Wish New Mexico, and to Give Kids the World for giving Madeleine (and the rest of us) such an amazing trip.

And here we are in the middle of October already. We have been enjoying a month "off" of treatment while waiting for the MIBG treatment to do its thing. Madeleine has a whole slew of scans and tests starting next week. These will tell us if the treatment worked, and if we are doing it again. I'm feeling pretty nervous about the results of the scans. If her bone marrow is clean San Francisco may want to go directly to stem cell transplant instead of doing MIBG again. Madeleine's doctor also thinks that this is a good time for us to move. Ryan's extension on his post doc is coming to an end and we are heading to Tallahassee at the end of the year. I have mixed feeling about moving (basically I don't want to), but it will be another adventure.

Going public

noreply@blogger.com (Amber) — Tue, 01 Oct 2013 02:34:00 +0000

I saw this post today and I found myself nodding my head in agreement at nearly all of it. Rest assured, I don't get upset or angry when friends say these things. They really do seem like the right things to say, and I know that the intention is always good. The "You're so strong" comment does tend to bother me, although I know it comes from a really good place. When someone says that, I feel that I don't have any other option than to be strong. Sometimes I'm not strong. And sometimes I'm sick of being strong. I know that I'm not doing anything that any other parent wouldn't do. When something like this happens, when your child is diagnosed with a life-threatening disease, you step up. You have to. At any rate, I don't take offense to any of those comments because I know that it is all said with love, and I know that people don't know what to say. If the tables were turned, I wouldn't either.

We have, however, had our fair share of stranger interactions because of Madeleine's cancer. From the little old ladies (ALWAYS the little old ladies), to the servers at restaurants, to people on planes, in airports, wherever. I'm pleased that there have been, by far, more positive interactions than negative. In San Francisco someone approached us on the street to ask what kind of cancer Madeleine has. I inwardly cringed because these conversations with strangers often leave me exhausted. I don't want to explain what it is and how it got there, and what we are doing to get rid of it. I don't want to see that look of pity, and then hear the inevitable, "I'm praying for her."* This woman, however, smiled and introduced herself as a childhood cancer survivor. This has happened to us a few times now, and I always appreciate it.

I also appreciate the smiles from other parents. It's obvious that Madeleine has cancer, and they know it. I loved the guy in the Los Angeles Airport that came up to Mad and told her she was beautiful and asked her if she was a movie star. I teared up when someone gave her free ice cream and told her that he was a survivor too. A couple of times someone has paid for our meal at a restaurant - one time they introduced themselves, and one time it was completely anonymous.

When we were in Sea World, a man in uniform (Air Force, I think) came up to her and said that he had been to war in Afghanistan and that she was far braver than him. That's all he said, and that's all he needed to say. Ryan and I both appreciated this so much. It's these little moments of compassion that truly make all the difference to us.

I started writing this with the thought that I would describe some of the less than ideal encounters that we've had, but I'm happy with the direction that it took instead, so I will leave it at this:

DON'T ask, "What's wrong with her." (ESPECIALLY in front of her).
DON'T ask, "Will she be OK?" (believe it or not, this happened, also in front of her).
DO smile.
DON'T tell me that, "God has a plan." In what f-ed up world is giving a kid cancer anyone's plan?
DO tell her she's brave, or smart, or beautiful.
DON'T stare.

*To be honest, prayer is not really my thing, personally, but I certainly don't have a problem with people praying for Madeleine. In fact, I appreciate it. I know that people feel helpless, and this is one way that they feel they can help.

Home again, home again.

noreply@blogger.com (Amber) — Wed, 25 Sep 2013 15:46:00 +0000

After nearly a month of travel, we are finally home again. The seasons changed while we were gone, and it is very much Fall here now with the changing leaves and colder temperatures.

While we were in Coarsegold (where my parents live), we were able to visit Meme, the girls' great grandmother. She is 97 and going strong!

They had set up a little party for us with balloons and cupcakes.

After living with her grandparents for a week, Madeleine and I drove back to San Francisco for her stem cell infusion. This was a very mini stem cell transplant. They used her cells that were collected in Denver a couple of months ago and gave some back to her to help recover her counts. Like chemo, the radiation that she received lowers her counts too, however, it's not a predictable three-week cycle the way that chemo is. Her counts are low and will remain that way for about another week. By then the stem cells should be growing into blood cells and she will see some recovery. Her counts are low, but not too low for school or travel.

These are the stem cells going in. You can see them in the red line there. The color is red because some red blood cells are present in the stem cell collection also.

While in the hospital we got to explore some of the activities and programs that they have for kids at UCSF. We started in the school room, which is staffed by credentialed teachers. Madeleine hung out there for awhile and learned how to build a Lego thing with a conveyer belt. An engineer happened to be volunteering that day, so we were lucky to have met him and to participate in that. Next we checked out the technology room where a different set of volunteers were teaching the kids about stop motion claymation (like Wallace and Gromit). The story had already been written, but Madeleine got to move the clay objects one tiny movement at a time while the scene was filmed.

It's hard to see, but here she is working in front of the green screen. Later they will put the movie together and email us the link to it.

After that we spent some time in the play room. It's nice that they have so much for kids to do at UCSF. Many of the kids on the oncology floor can be there for months sometimes. Programs like these make living there more bearable.

We were told to expect the stem cell infusion to last all day, but that we would be able to leave the hospital that night. Of course, this did not happen and we ended up having to spend the night and almost all of the next day as well. They test Madeleine's urine to make sure she isn't having an allergic reaction to the cells. This is pretty rare since it's her own cells, but she could possibly have a reaction to the substance that they use to freeze the cells, or it is also possible (but rare), that some bacteria could have been introduced during the handling and freezing process. The whole time we were there we were waiting for her urine to be clear of red blood cells. I guess if there is a problem the first sign would be blood in her urine. It kept coming back from the lab with smaller and smaller amounts of blood, but there was still some. This was extremely frustrating. The doctors finally let us go even though it was still showing a very small amount. Her urine was retested Monday in clinic in Albuquerque and it is still showing some red blood cells. So, I don't know what is going on with that. They will retest again next week and see if it is a problem, or not. This could have nothing to do with the stem cells, and be something else entirely. It may not be a problem at all, I'm not sure.

We made it back to my parents' in Coarsegold late that night. The next morning was a flurry of packing to get on our plane back to Albuquerque. We left a lot of stuff there, but there is no way I could have carried any more bags - I was already traveling by myself with three small children! We all survived the flights (even the people around us. On one of the flights Madeleine sat by herself next to a man that happened to have triplets - thank goodness he was used to kids) and made it home with only one small melt down from Laurel.

Now we are visiting Albuquerque once a week for labs and an exam. The home health nurse is also coming to the house once a week for labs as well. Once her counts start to rise I think we will only have labs once a week. So, for now, all the way to the end of October, we get to be home! At the end of October she will repeat all of the scans and the tests that were done before the MIBG Therapy to see if it worked. If it is successful she will do it again in the beginning of November. That is as far as I know. We have heard a lot of talk about a full stem cell transplant being the next step, but no decisions have been made about that yet.

That's Laurel, climbing everything in sight!

Released

noreply@blogger.com (Amber) — Thu, 12 Sep 2013 18:47:00 +0000

Madeleine was released from the hospital yesterday. She is still a bit radioactive, but not too much. She got pretty bored during isolation, got sick of t.v., and had to resort to math worksheets. At one point she also colored with marker all over her body and all over her bed. Fun times!

They took a quick MIBG scan before discharge to see that the medicine went to the right places. The tumors all showed good uptake of the radioactvity, so Dr. Matthay thinks that she will have good results from this treatment. They won't do scans again for 6 weeks, so we really won't know for sure until then. Meanwhile, we are staying at my parents until Mad gets her stem cell infusion next Friday. Laurel and Claire are here, so it has been nice being all together for the time being. Ryan will fly home to New Mexico on Sunday, and then the girls and I will fly back in a little over a week.

The blood pressure medication that she was on has been discontinued (yay!) because her pressures have been good. She is currently on potassium iodine to help protect the thyroid from the radiation, and she has six more days of vorinostat, which is a chemo drug that she takes by mouth. Vorinostat helps the MIBG go to the right places, and it may kill some tumor cells as well. She is having some nausea, but other than that she is feeling great!

Make A Wish Trip, Day 3

noreply@blogger.com (Amber) — Mon, 09 Sep 2013 03:25:00 +0000

After two full days of Disney's Magic Kingdom we decided to change it up a bit and hit Universal Studios. First, however, we had to take care of some business at GKTW Village.

The ceiling of the castle in the village is covered in stars from all of the children that have visited the village. There are around 200,000 stars. These pictures don't do it justice, but it is moving to look up and see so many stars.

Every star represents a child that has come, and every star also represents a wish that a special child has made. They have this whole wish fairy thing where she takes the star and then looks for a good place to put it. After making her wish a "star passport" was delivered to our villa the next day with the location of Madeleine's star in the castle. We went back to look for it.

If you can make this picture larger you can see a red laser point on the second circle up from the bottom, in the middle. That is where Madeleine's star is. Alumni families can come back to Give Kids the World to visit for the day and to find their child's star. It's special that a little piece of her will always be there.

Inside the castle we were also able to visit the pillow fairy who gave us a pillow for each of the kids, and play with the wishing well that makes a different sound every time someone throws in a penny (even the pennies were provided!). It burped at me.

The reigning queens

Universal has two parks, Islands of Adventure and Universal Studios. We first headed to Islands of Adventure. There really wasn't too much for little kids here. They did have a fun Dr. Suess land that we spent a little time in, but then we pretty much walked through the rest of it as it was all geared towards older kids and adults. We did see the Harry Potter world and definitely would have spent some more time there if the kids weren't with us. I was really impressed with what I saw of it (and the Butter Beer, so good). After a couple of hours we walked over the Universal Studios side. There were a few more things for kids, and some characters to meet, but again, not the best place for little kids. If we were doing this trip again I would skip Universal altogether.

Meeting Shrek! At Universal Madeleine's special card allowed us to go the the front of character meet and greet lines as well as getting a front of the line pass on the rides.

We did find a fun playground to play on for a bit.

I think Scooby Doo was taking her away. They had a lot of fun with him.

Laurel loved him too!

All in all, a really fun day.

MIBG Therapy

noreply@blogger.com (Amber) — Sat, 07 Sep 2013 04:31:00 +0000

The MIBG infusion started today. The drug was infused via IV, using her broviac line over about an hour and a half. There were about six doctors milling about during the process. A radiation physicist, visiting nuclear medicine guy from Canada, oncologists, etc. This treatment is relatively new. They have been doing it for awhile, but it's still a phase one (late phase one, which is good to know) trial. By comparison administering chemo is pretty routine. Once the MIBG started running we all had to leave the room and Ryan and I were given our radiation safety education. Ryan has had a lot of radiation safety training, so none of this was too exciting for him, but it is all new to me.

Madeleine is feeling okay. She had a touch of nausea a little earlier, but it seems that was quickly controlled with some anti-nausea meds. They really don't want her throwing up because the radioactivity is released through all bodily secretions (urine, tears, sweat, vomit, etc.), and cleaning up any of that is not a whole lot of fun. Her catheter that was placed yesterday was hooked up to a pump that runs directly into a constantly flushing toilet.

We have to suit up to enter the room: gown, booties, and gloves. The less time spent on her side of the lead wall, the better. It's much better, if possible, to hand things over the lead wall. We also have to wear a monitor every time we go in the room, and then write down the starting and ending number after exiting. The radiation people add up these numbers and let us know when we've reached our limit for the day. The nurses are exposed to radiation all the time, so they get less time in the room than we do. After exiting her room we have to use a Geiger counter to see if anything is contaminated. It's a terribly interesting process, it it wasn't for the fact that it's my daughter on the other side of the lead wall.

So far Madeleine has been handling the isolation part of this very well. And technically she's not very isolated. We can hear and see her (through the mirror), and she's really not all that far away. She has a lot of things to keep her occupied - movies, coloring and art things, some toys, and my old Kindle Fire that was given to her for this purpose loaded with shows, music, and apps. Now we just need to get through the next few days. Every day the radiation levels will be measured, and every day we will be able to be in the room more and more.

San Francisco

noreply@blogger.com (Amber) — Fri, 06 Sep 2013 05:43:00 +0000

I just wanted to write a quick note to let everyone know that we have made it to San Francisco. We had some fun at the beach when we first arrived.

This is Laurel in her natural habitat. She really is a "free range" kid. She thinks nothing of doing somersaults on the sand at the beach. Why not? She is not so easy to control in the middle of San Francisco because her natural inclination is to do wacky things at all times.

My parents met us here and then took Laurel and Claire home with them the next day so that Ryan and I can focus on Madeleine during her MIBG treatment.

She was admitted to the hospital today and had a Foley catheter placed. The Foley is because the radioactivity will be emitted through her urine, so they want to get it out of her bladder as soon as possible. After three days she may be able to have the catheter removed. Tomorrow the MIBG infusion actually starts and we will have very limited access to Madeleine for a few days.

This is what the room looks like:

It looks pretty much like a regular hospital room, but a small one. The floors are covered in plastic, as well as all the light switches, tables, etc. That little wall on the right is a lead shield that is placed between the bed and the door.

This is more of the lead shield. That little room outside of the door with the chair is where I am sitting now. That is where we have to sleep. It's pretty awkward because it's pretty much in the hallway, and it's between Madeleine's room and another patient's room. I'm not expecting to actually sleep much. Luckily we are trading off nights. Tomorrow morning Ryan will come and relieve me and I'll go get a nap (hopefully) at the Family House, where we are staying.

This is the view from the room. Pretty nice!

I will post more tomorrow night after the infusion.

Make-A-Wish trip: Day 2 and 3

noreply@blogger.com (Amber) — Fri, 06 Sep 2013 05:04:00 +0000

The second day of our trip was our first full day there so we were all excited to hit the parks. As part of our trip we were given three day park-hopper passes to Disney (includes Magic Kingdom, Animal Kingdom, Disney Hollywood Studios and Epcot), two day park hopper tickets to Universal Studios, and one day at Sea World. They also had free tickets available to Legoland and a whole bunch of other parks, but we just stuck with the main ones.

After getting breakfast in the Village we headed to The Magic Kingdom.
As a Wish kid, Madeleine had a special guest assistance card that allowed her, and the whole family, to use the fast pass entrance to all the rides, bypassing the majority of the line. I don't think we waited more than five minutes for any ride. At Universal Studios and Sea World, her Wish kid status allowed her to be escorted to the very front of every line. This really made the parks enjoyable. Even though they were crowded, it didn't really matter because we still got to go on as many rides as we wanted.

We stopped for lunch somewhere in The Magic Kingdom, and the employees there gave her a "magic moment." They made a big deal out of her, and brought her some Princess Ariel goodies. It was a really nice surprise.

We decided to go back to GKTW that evening for dinner. It happened to be "Christmas" that night, and included a visit with Santa, gifts for all three kids, a parade, and some crafts and dancing in the main area of the village.

We happened to come across some Village characters that were wandering around. Laurel was really enamored with Buttons the bear.

The whole family had to get a picture once Mayor Clayton and his wife (the bunnies) joined in!

It snowed that night. Not real snow, of course, but the kids still thought it was amazing.

That night, once the kids were asleep, I was super excited to find an opening at Cinderella's Round Table. This restaurant typically fills up as soon as reservations open up - 180 days ahead of time! I had looked around a bit before we left on our trip but everything was booked up. I happened to look again and saw that there was one opening for 8:20am for the next day. So, we got up early and headed into the park again, getting there before they were even open. This restaurant is inside the castle, which is kind of cool. We took some pictures with Cinderella (I'll have to post these later), and then headed upstairs for breakfast. The food was okay, but the main draw were the princesses. Every few minutes a new princess came out and made her way around the restaurant, stopping at every table for photos. It was fun and the girls were happy to meet all of the princesses.

After breakfast we did some more rides and stopped to meet some fairies.

We headed back to GKTW to rest a bit in the afternoon. On our way out we stopped to check out the Wish Lounge. This is a special room in The Magic Kingdom just for Wish kids! It was air conditioned and was a nice place to sit and hang out for a little while. Have I mentioned how hot it was in Orlando? So hot and humid.

Later that evening we returned to Magic Kingdom. We almost didn't go back because everyone was pretty tired, but I'm so glad that we did, because this was truly the best day of our trip. We started with princesses and ended with a special makeover for Madeleine. She had been dying to go into the Bibbidi Bobbidi Boo salon in the castle. I didn't really know anything about it, so we stopped in to find out about it. I was told that they were reservations only and that there hadn't been any cancellations. We were about to leave when the hostess noticed Madeleine and asked if she was a Wish kid. They said that they could get her in since she was a Wish kid. They then went over packages with me and I chose the hair and makeup one (the cheapest one, it got expensive fast after that!). Since she doesn't have any hair they said that she could choose any princess wig that she wanted and she could have that hair done and keep the wig. So we were pretty happy about that. A few minutes later the hostess came and asked Madeleine who her favorite princess was. After that they led her back to the changing rooms so she could pick out her wig. However, before she opened the door, the hostess explained that the Fairy Godmother had come and left Madeleine a present. She threw open the curtain and there hung an Ariel dress for Madeleine to keep! They had also lined up every princess wig and she got to pick whatever she wanted. She could have worn the Ariel costume with Cinderella hair, or whatever, but she chose Ariel hair as well. What an awesome surprise! Madeleine was so happy and I felt like crying. They were so nice to us, it really was magical.

The surprises didn't stop there. After her hair and makeup were done they said we could go next door for photos. I thought maybe we would buy a photo if any of them turned out okay. While we were in line the manager of the photo place said that he had spoken with the manager of the salon and that they had agreed to give us a photo package on top of all of the other things they had already given us. Wow! It turns out that the pictures weren't so great, but that's okay, Madeleine likes them. I was really impressed with Disney. They really made her feel like a princess.

Make-A-Wish Trip: Day One

noreply@blogger.com (Amber) — Mon, 02 Sep 2013 02:20:00 +0000

Two days before Madeleine's Wish trip we STILL weren't sure whether or not we would be going. Her counts were still dropping, but still in the safe zone for travel. The next day at clinic we were finally given the green light! This meant rushing home from clinic to frantically pack five people's clothes and necessities, all the medical supplies for Madeleine, a box of supplies that were being shipped to my parents, etc. It was stressful. In the middle of that clinic called and said that they needed a few more labs for San Francisco. We were planning on driving back to Albuquerque that night to stay in a hotel before our early flight to Orlando the next morning. Our doctor arranged for us to go in through the ER on the sly that night and do the labs then. We had instructions involving a secret password and handshake. Just kidding. Sort of.

When we finally got to the hotel we were greeted with a room filled with balloons, cookies, gifts, and Disney facts. It was really fun and the kids were so excited. No one fell asleep until about midnight, and we all woke up at 4:30 am the next morning. The hotel let us keep our car there for a couple of weeks (for free!), so we took the earliest shuttle over to the airport. We were greeted by our Make-A-Wish coordinators, Jamie and Allison. I can't believe they got up that early. They had tiaras for the girls, and breakfast for all of us. They escorted us through security, carrying bags and sometimes children. Jamie even followed us all the way onto the plane to bring me coffee and the girls orange juice. Wow!

Amazingly, we all survived the flights and arrived in Orlando where we were greeted by someone from Give Kids the World (GKTW). He helped up get our bags and then walked us over to the rental car place to get our car. The girls grabbed some brochures and immediately started planning our trip.

We had our pick of minivans (rental provided by GKTW) and then made the drive to Give Kids the World Village. All the kids fell asleep on the way there and Laurel just about lost her mind when we had to wake her up to check in. Madeleine was given a stuffed Mickey Mouse, and Laurel and Claire both got Shamus. We were given a quick tour of our villa -- Wow! I had looked up information about where we were going to be staying, but I wasn't expecting anything so big, or so nice. We have a two bedroom, two bath villa with a full kitchen and large living room. It comes with just about everything we need to live here comfortably for the week.

We spent the afternoon exploring the village. We were all so tired that it's hard to remember exactly what we saw and did that afternoon. We definitely found the ice cream shop! Ice cream is served (everything in the village is free) from 7:30 am to 9:30 pm, and getting ice cream for breakfast at least once is mandatory.

The carousel might be Laurel's favorite part of the entire trip. I've lost count of how many rides on the carousel she has taken!

This tree (Elmer), snores. It's pretty hilarious - especially if you are five!

Mayor Clayton is the mascot for Give Kids the World. We saw a lot of him during our stay.

Visiting the salon. Kids can get tattoos, painted nails or face painting.

In which I ramble

noreply@blogger.com (Amber) — Sat, 24 Aug 2013 19:54:00 +0000

I forgot to mention this, but Madeleine got her ears pierced a few weeks ago! Originally we were planning on waiting until she was much older, but, well, things change. We had to get special permission from her doctor, who put her on 30 days of penicillin to ward off any bugs (remember that she doesn't exactly heal well when she has 0 white blood cells). We had a tiny window when her counts were high enough to get pierced before starting the next round of chemo. Mad almost chickened out and didn't do it, but in the end she was brave. She loves her earrings and is very proud of herself for choosing to get them pierced. I kept telling her that this was one thing that she can choose to do, or not to do, unlike the millions of other painful things that have happened to her lately.

This past week has been challenging. Ryan was away in Tallahassee to take care of some job-related things. It really was the worst possible time for him to be away since we expected Madeleine's counts to bottom out. Every other time she has ended up in the hospital with a fever during this time. Thankfully that did not happen this time. Every morning I would think, "well, we made it one more night without being hospitalized." Thinking of being in the hospital with all three kids (or finding temporary homes for them while we were hospitalized) was truly stressing me out. I know I can count on local friends, but I feel that many of them have done so much for us already, and I hate asking for help :) And, I worry about Laurel being shuffled around all the time. She's too little to understand any of this, and we have seen some changes in her behavior after some of these separations. Not to mention that she has really started stuttering. Cancer really does devastate the entire family.

To compound the stress, we had to be in Albuquerque four days in a row for scans and tests. Albuquerque is a two-hour drive from our home. In the past week Mad has had: A PET scan, CT scan, MIBG injection, MIBG scan, and an MRI. The MRI was at ten PM, which is crazy ridiculous. Madeleine was a trooper and was still for all of these scans. This was the first time she has done an MRI (over an hour long) without sedation and she did extremely well. I am proud of her. Madeleine and Claire and I stayed at the Ronald McDonald House that night, and Laurel stayed with good (super, amazing, wonderful!) friends that have just showered us with love and support. We love you Cooper family, seriously.

She was able to go to school on Tuesday, and Friday of this week. She loves kindergarten, and we are so grateful for any days that she is able to attend. Her counts have not bottomed out yet, which is surprising. On Monday her ANC (infection fighting ability) was at 8,000, and at 3,000 on Thursday. She has to be above 1,000 to go to school. So, we don't really know if she's reached the bottom yet, or not. I don't understand why there isn't a device, like the ones that measure glucose levels, to quickly ascertain what her counts are. It's frustrating to not know whether we should stay home, or let her go out.

Next week she has an Echo and labs on Monday, and a clinic visit and bone marrow aspiration on Tuesday. The labs on Monday will tell us whether or not we are leaving for Disney World on Wednesday! All of these scans and tests are for San Francisco, so she can begin the MIBG therapy trial there. Oh, we found out that they were able to get Mad a spot on the Vorinostat trial, which really doesn't mean anything to anyone, but it's good news. It's the one that the SF doctor wanted to get her in.

So, it has been a whirlwind of traveling, and phone calls to San Francisco, and prepping for Disney and for our SF stay. We will mail a big package of medical supplies to Give Kids the World in FL on Monday, and another to my parents' for our stay there. Thank you to Make-a-Wish for letting us use their UPS account!! The plan, if everything goes as it is supposed to, is to head to Albuquerque on Monday afternoon for the echo, come home, drive to Albuquerque very early on Tuesday for clinic and bone marrow aspiration, come home, attend the open house at Mad's school, and then drive back to Albuquerque that evening to stay at a hotel before our 6am flight the next morning. The hotel is letting us park our car there for free (as part of Make-a-Wish) for 2+ weeks while we are gone. Our Wish coordinators will be meeting us at the airport at 5:15am on Wednesday just to see us off! Please, please, please let her counts be good enough on Monday to go!

In middle child news, Laurel started her first day of preschool. She is going to the same preschool that Madeleine went to, with the same teachers, so she has had no problems with that transition. Her teachers are being great about specifically not mentioning Madeleine, or asking me how she's doing when Laurel is around. They want school to be a place just for her, and for that I am thankful. Laurel needs some extra attention and love these days.

noreply@blogger.com (Amber) — Wed, 14 Aug 2013 22:57:00 +0000

Today was Madeleine's first day of kindergarten. Unbelievably, we were discharged in time, and she made it to the first day. Madeleine is feeling okay. She's been having a lot of nausea, which is typical for being so close to the end of chemo. She almost made it through her first half-day of school before needing to be picked up for feeling "yucky." I'm really impressed with Madeleine's school, and especially her teacher. Mrs. Whitaker seems like the perfect match for Madeleine, and for this situation. They know she won't be attending much, but are really rolling out the red carpet for her. Hopefully she will feel well enough to attend for the rest of this week. I'm sure she'll be feeling better by next week, but unfortunately that is when her counts will be at or near zero, so she won't be able to go. Also, we have a whole slew of scans and tests that San Francisco needs before starting their therapy. Our hospital here is trying to get everything done next week and the following two days. Because after that we will be on our Wish trip!

Planes, BART, light rail, buses, shuttles, taxi

noreply@blogger.com (Amber) — Sat, 10 Aug 2013 05:20:00 +0000

Our trip to San Francisco mostly consisted of getting from one place to another. I think we took all possible forms of land transportation. Our flight out of Las Vegas (we connected there), was delayed about seven hours, so we hopped on the plane to Oakland instead and took BART into San Francisco. One of the Southwest employees told me that this was the way to go since SFO is notorious for delays due to low clouds. Unfortunately our checked bags were still on the delayed flight and we didn't get them until midnight that night (for a fee! We "voluntarily separated" from our luggage even though the flight was delayed for a ridiculous amount of time). Because of getting into San Francisco later than planned we weren't able to stay in the Family House for that night, which is housing for families of seriously ill kids being seen at UCSF Children's Hospital. Our San Francisco social worker was able to quickly find us other accommodations, and luckily for us they were across the street from the beach. Even though it was rather cold Madeleine had a great time walking on the beach the next morning.

The consult with Dr. Matthay went very well. Madeleine will be in one of two trials. Both use the same level of MIBG (radioactive isotope that goes directly to the tumor, this is the radiation component of her treatment), and either a dose of chemo to go with it, or a different drug. We are waiting to see if there is a spot open in one of the trials, but she will definitely be getting one of these combinations. After signing consents and going over side-effects we toured the room where the therapy will be happening. It looks like a regular hospital room, but the walls and floor have lead buried in them. There is also a large lead "wall" shield that is placed between the bed and the door. The door remains open all the time, and caregivers are in the safe zone as long as they are on the right side of the lead shield. There is a small ante room with one of those lovely chairs that turns into a bed for a parent to sleep on. If you've never had the pleasure of sleeping on such a contraption consider yourself lucky. We will be able to talk to Madeleine, and somewhat see her because of a mirror on the other side of the room. For the first day or two we will only be able to spend about 20 minutes total on her side of the shield. Most of this time will be devoted to helping her change clothes, or administer medicine, and other elements of self-care. The nurses can't be in the room for any longer than we can. Madeleine will be pretty much confined to her bed during this time because she will have a Foley catheter placed to remove urine from her body. The catheter drains into a continuously flushing toilet. The radiation is emitted through the urine so it's important to get it out of her bladder as quickly as possible. As the days pass the level of radiation will lessen and we will be able to be in the room with her for longer amounts of time. They estimate that she will be inpatient for 5-7 days.

I realize I'm using the words radiation and radioactivity somewhat interchangeably. Are they the same thing? I really don't know.

After the consult we went to Pier 39 and thoroughly enjoyed ourselves on the wharf. I think the sea lions were Madeleine's favorite attraction.

Today, Friday, the day after we flew home, Madeleine checked in for chemo cycle #4. I'm a little nervous about this round because it uses different drugs and we don't know how she will react to them. Ryan took her in today, and we will trade off on Sunday so that he can go back to work.

noreply@blogger.com (Amber) — Fri, 02 Aug 2013 18:11:00 +0000

It seems to be the trend that 5-7 days after chemo ends Madeleine is back in the hospital with a fever. This time was a bit easier, the fever was low-grade, blood cultures were negative, and the fever was quickly managed with IV antibiotics. We had gone to Albuquerque for a blood transfusion and it turns out she had a low fever too. She spent four days in the hospital for the fever this time, although most of that was actually just waiting for her counts to come back up. Fever can be extremely dangerous in a person with no immunity, which is why she is admitted every time, even if it is low.

This week we traveled to Albuquerque two days in a row for an MIBG scan. On the first day a radioactive dye is injected, and then the second day is the actual scan. The active tumor takes up the dye and it lights up during the scan. Doctors use this scan to measure how much of the tumor is still active. In order to get the treatment coming up in San Francisco, Madeleine's tumor still has to be active, or MIBG avid. This is the only time that we are actually hoping that Madeleine will still be MIBG avid!

Yesterday Madeleine and I were able to visit the Make-A-Wish office to meet our wish coordinator, and to sign papers. What a blast! They have a room full of toys (the "wish fulfillment" room), and someone came and played with Madeleine, all while "interviewing" her about her wish and her favorite games, foods, color, etc. I sat and signed a bunch of papers, and in the end we all played UNO together. They gave Madeleine a special "Make-A-Wish" Barbie to take home, and one for Laurel too. Talking about Madeleine's wish has gotten her that much more excited about our trip to Disney World! I just received the airfare confirmation. Our trip (pending low counts, fevers, or any other disasters) will be from Aug. 28 - Sept.3. We will be staying in a hotel in Albuquerque on the night of the 27th, because our flight is at 6 am! On the third we are going to fly directly from Orlando to San Francisco so that Madeleine can be admitted to UCSF hospital the next day. Wow! I'm already impressed with Make-A-Wish for being able to squeeze this trip into this small window that we have before treatment in SF starts, and especially for flying us all the way to San Francisco to get her there in time! We are all getting very excited about the trip. Make-A-Wish pays for everything: airfare, rental minivan, hotel stays, even food and incidentals. They don't pay for souvenirs, but Give Kids the World, the place we are staying, is known for dropping off presents every day. Woo hoo!

Next week, on Tuesday, Mad and I fly to San Francisco for the consultation with the doctor there for the MIBG therapy. This should be a fun trip. I love San Francisco and am excited to show her some of the sights. We come back on Thursday, and then are being admitted to UNM on Friday for chemo #4.

Besides hospital visits and trip planning, the girls have been thoroughly enjoying the summer. As I write, they are outside with the neighbor girls playing detective, and painting rocks, and eating popsicles. I am so glad for these days of play.