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.

MIBG done

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

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!

 

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

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.