Another Relapse

It’s been entirely too long since I last posted.  There are many reasons for that – not the least of which is my general state of fatigue and burn out on posting about cancer and the roller coaster we ride all the time.  I have felt the need to keep you up to date on what’s been going on but haven’t had the time, energy or usual calling to sit down and put it into words.  Until now, that is.

A few days ago I had prepared a beautiful post about bone marrow transplant (BMT) and was very close to publishing it.  It was full of details about what we’ve been doing over the last month and what our journey ahead looked like as we anticipated finding a donor etc.  Thankfully I didn’t post it and don’t have to back track.  Everything has changed for us so now I’ll recap and bring you up to date on where we find ourselves and what’s going on with Phil.

A little over a week ago Phil and I met with young Dr. Kossman and Phil won approval to fly to Atlanta to see his friends for a long weekend.  At that visit he told the doctor that he found some new lymph nodes above his left clavicle.  At the time they were like small peas in size and none of us were certain of their significance – they could have been reactive to the pleural effusion he just had or to the mild infection he’d been treated for.  Of course, they could mean recurrence of the lymphoma but they were small and we all hoped that wasn’t the reason.  The doctor told him to go to Atlanta, have a great time, don’t mess with the lymph nodes and he'd see how they looked when he got home.

Phil did have a great time and returned home thankful to have seen his lifelong friends.  But he returned home tired with a sore chest and difficulty sleeping at night from pain.  The day after he came home he had another thorocentesis (#4) and almost 2 liters were removed from around his left lung.  He immediately became nauseated, had severe pain and was dizzy and lightheaded.  We spent the day in the radiology department where he received I.V. fluids, morphine and anti-emetics.  A rough, tough, homecoming.

The next day when he followed up with our Dr. Kossman he looked like crap and felt even worse.  The Percocet he took for pain at home was not holding him through the night and he was exhausted.  Dr. Kossman measured the lymph nodes in his neck and they were now 1.8 and 2 cm respectively and he had developed another one down below his clavicle measuring 2 cm as well.  There was also a new one in his axilla (underarm).  With these new nodes, the nodes we knew of on his last scan and another malignant effusion, Phil was clearly in relapse.   As Dr. Kossman said, “your disease is coming back forcefully and in a lot of places at once.”

So.  No bone marrow transplant.  They are not done on patients who are not in remission. On that note, neither brother is a match.  If Phil achieves remission again he will have what is called a MUD transplant (Matched Unrelated Donor transplant) with a donor from the National Registry.  This also means he will stop the nelarabine chemotherapy.  It is no longer working.  He will move on to the next option called alemtuzumab or Campath-1H.  It is a monoclonal antibody which targets CD-52 protein and knocks out T lymphocytes (all of them).  Unfortunately, by knocking out all T cells and not just cancerous ones it is very immunosuppressive and will put Phil at risk of opportunistic infections – like Mucor.  He will have to resume ambisone, his favorite!  

He will be having a CT/Pet scan to check the status and extent of disease again before restarting treatment.  That is scheduled for the middle of next week.  Until then he will basically be untreated and in an unopposed disease state.  That means more suffering and discomfort for him.  Our kids clearly know he is ill but we have yet to explain the full extent of what is going on.  Once again we call on you to hold us up in your prayers as we negotiate these numbing, stressful and bittersweet times as a family.   

Relapse

If you haven't heard, the Conrad Family has been through some changes of late.  We moved to a new home over the first weekend of July and were accused by our mover-friends of being hoarders.  It was the hottest week we could have picked to do the move and I, too was kinda mortified by how much stuff we still have.  I truly did downsize when we left Washington but realized anew that our situation has changed yet again.  While we find ourselves blessed to be living in a cool old rustic 1500 sq ft house built in the 30's-50's, we're trying to fit 2800 sq feet of household into it.  Not gonna work.  So, my garage sale is turning into an Estate Sale and I'm OK with it.  Nothing like a good purge to set things right!


Our summer is well underway and Bennett is now hitting 50 mph in the batting cages and is excelling in baseball playing catcher, 2nd base and center field depending on where his arm and "leadership" are needed.  He's got a great coach and team and has stayed with the core members since early last year.  Olivia is Bennett's favorite understudy, catching well and hitting hard enough that we have to direct her away from the house.  She swims like a fish and sings all the time.  She continues to have a sweet and happy heart.  A puppy and a kitten are tops on the list for them once we get settled into our new domicile - promises made in WA and long awaited to be fulfilled.


As for Phil, I mentioned in my last blog that he is no longer in remission and we are at a crossroads concerning his treatment.  To review, during his last chemotherapy course he developed another pleural effusion and a CT scan and thoracentesis were performed.  Those results were compared to the previous CT from 9 weeks prior and showed the return of a 5 cm lymph node in his chest and pleural fluid full of cancerous lymph cells.  Fortunately however, despite some very tough days once he came home he was able to remain out of the hospital and without complications with this last course of chemo and he avoided having a blood transfusion!  It was the only time he's made it through a course without any "problems"!  Better late than never : )


It has been an intense few weeks of recovery for he and I.  We are in the midst of a major move.  There has been much to ponder.  There have been decisions to be made about what if anything to say to the kids.  Initially we had to wait until Phil was through the worst of the recovery before we could even begin to address what comes next.  Then slowly Dr. Kossman began to explain that the nature of Phil's disease has changed.  He told us to think of it as more of an ALL picture, acute lymphoblastic leukemia, the most common type of childhood leukemia.  Not only has the name changed but he will no longer be treated with the Hyper-CVAD regimen because he relapsed on it.  Initially Kossman spoke of trying various chemotherapeutic drug combinations to try to "buy some time".  Sobering words.


Then just a few days ago at our last meeting, he told us of a new FDA-approved drug specifically for relapsed T-cell lymphocytic lymphoma and ALL.  It is so new that he has no experience with it and spent the weekend reading up on the medical literature.  It is also very expensive and we are waiting to hear if our insurance company will be covering it.  We are hopeful as Phil is the perfect candidate.  We have received approval from Alvarado Hospital to treat him with it there and are happy to learn that it is an outpatient therapy given one time every week and a half!  No more 4 day stints with bad food!!


To prepare, Phil had another CT scan this week to determine what his last chemotherapy regimen accomplished.  We are hoping the 5 cm chest mass was shrunken somewhat by the chemo and we are anxious to hear about that.  His kidneys are still a bit taxed from all the medications but he is still strong enough to move some furniture around, unpack boxes and soldier on.  He is far from done fighting and we are thanking God for His incredible timing on this new drug.  We have yet to really fill the kids in on all the changes that are going on.  We figure they've seen their Dad come home from chemo, the usual tired and run down guy.  He's bounced back and is doing better, for now.  To try to explain all the nuances is more complicated than they need when everything all looks the same to them.  When things start looking different or Daddy isn't responding to the new drug then we'll have something to talk about.  As Phil says, they've had plenty of sadness and worry already.  
It's interesting though, the other day when Phil was particularly tired and napping on my sister's couch, Bennett could be overheard saying aloud to no one in particular, "I don't think Dad's in remission anymore".     
                                Our lives are, as ever, in His precious hands.