Peace

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

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

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

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

 

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

 

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

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

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.