House Call

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Dave heard from his doctor at Johns Hopkins yesterday.  She called to let him know that he was officially out of the trial.  This makes sense because it clearly wasn’t working.  She took time to answer questions that Dave had about his scan and let him know that they may have some trials for him.

Today we met with Dave’s local oncologist.  He told us about a phase II trial that is available to Dave based on the genomic testing that he had done previously.  That testing showed that Dave’s tumor has a P13K activated pathway.  This pathway is known to be involved in cell growth and tumor survival.  The trial drug is being tested to see if it will block the activity on that pathway.  (At least I think that is what it all means.)  We also talked about radiation treatment.  This would be done as a palliative measure if Dave has pain from his tumors.  I asked about conventional approved treatment options.  Dr. S. told us we were essentially out of those.  There is one FDA approved drug that Dave hasn’t tried but Dr. S. said he was “underwhelmed” by its efficacy and felt that only one of his patients had seen any benefit from it.  So, we are back on the drug trial train.

After the appointment, Dave went home to lie down and I went to pick Parker up from play rehearsal and hit the grocery store.  While I was out, Dave got a phone call from Dr. S.  It turns out that the trial was closing to new colon cancer patients tonight.  So, in order for a spot to be available for Dave, the consent forms had to be signed.  Tonight.  So, Dr. S. made a house call.  He came over to our house on his way home from work.  He told Dave he has NEVER done that before.  I am relieved to be back in the care of Virginia Cancer Specialists.  I appreciate all that Hopkins tried to do for Dave, but I am grateful for the organization, short wait times and, most importantly, personalized care that Dave gets here.

xoxo,

Robyn

Hope Floats

I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie.  Either way, if I am flipping through the channels and it is on, I stop and watch.  Every time.  There is a line in the movie about giving hope a chance to float up.

We spent today at Johns Hopkins.  Dave was due to start round 3 of the clinical trial.  He had labs and a CT scan done before meeting with one of the doctors.  She did not have good news for us.  The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before.  The words “innumerable tumors” were used in reference to his lungs.  All around a sucker punch to the gut.  Completely unexpected.  On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”.  What this means is that Dave did not start round 3 of treatment today.  Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him.  So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment.  We will let hope float up to take the place of utter disappointment.

After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity.  Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic.  I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment.  I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future.  They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist.  I am excited to have an expert team take a look at my girl.

Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here.  Together I know that we will come up with a plan that will get us back on the right track.

xoxo,

Robyn

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Breakfast Sandwiches on Valentine’s Day & a Doctor Visit on a Snow Day

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Happy Valentine’s Day, all.  Grant is always the hardest person to shop for, but the kid LOVES a good breakfast sandwich, so when I saw this gadget at Target, I knew it would make a great gift.  We all thoroughly enjoyed our egg, cheese and canadian bacon sandwiches this morning.  

Samantha drove up from school last night so she could go to her orthopedist appointment this morning.  I met her in Fredericksburg just in case the roads weren’t great getting home in all the snow.  As it turned out, the roads were totally fine.  The good news that came out of this morning’s appointment was that the doctor didn’t think that her condition would deteriorate any time soon.  The not-so-great news is there doesn’t seem to be anything right now that will make it any better.  The doctor we saw, who is an expert in his field, would not recommend hip replacement at this point.  While it may be in her future, she is not at the stage pain and movement wise that would make it necessary.  Sam is SO frustrated.  She is not bothered about the pain because she is used to it.  She IS bothered by her limited range of motion.  She feels that no one understands.  Truthfully, I don’t think any of us can fully understand what she deals with.  She is a tough kids and will get through this, but for today, she is really sad.  And I am going to let her be.  Eventually she will get the “this is not the end of the world” speech and the “we all have our challenges/it’s what you do with them” pep talk, but for today, she is allowed to be bummed out.  

We are enjoying another day off from school due to the 8 inches or so of snow that fell Wednesday night.  The dogs are napping.  Dave is napping.  Sam is napping.  Grant and Parker are playing a game, and I watched a full episode of iCarly without it occurring to me that I could change the channel.  We are looking forward to a quiet weekend with all five of us.  Dave has a big day on Monday with his first scan since he started the trial.  Very optimistic that we will hear good news.

xoxo,

Robyn

Dog Tired

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It has been quiet around our house this week.  Dave came home from Hopkins on Monday, crawled into bed, and has emerged only occasionally to eat or watch a little TV.    To say he has been tired would be a huge understatement.  We had been warned that his red blood count was low this time around so fatigue would definitely be an issue.  Yesterday he decided that he needed to get out of the house and went to the Y to sit in the sauna for a little while.  I could tell that he was feeling a tiny bit better today when he  texted me to see where I was – he was awake long enough to realize that I had been out for a while.

Another side effect that has troubled him is nausea.  Sensitivity to smells is a sign of nausea and probably has been the bigger issue.  We have done very little cooking since he can’t tolerate the various aromas.  I have had to stretch my imagination to come up with meals.  Luckily Grammy and PopPop brought dinner over on Wednesday so I got a break!

The last issue that Dave has been dealing with is the one that has gotten him out of bed.  He continues to have significant pain in his right side.  It started after his Sirspheres treatment in August.  The interventional radiologist said it would eventually subside.  But this treatment seems to cause it to flare up.  Nothing notable has been seen on his scans.  The doctors are throwing narcotics at the problem.  While I have absolutely no problem with Dave taking what he needs to be comfortable, I think it is time to figure out the underlying cause.  He will have another scan on the 17th and if nothing shows up, I think it is time to look into another type of scan or test.

We will be spending this weekend enjoying the winter Olympics and relaxing.

xoxo,

Robyn

Snow Day Update

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We had several inches of snow which means snow days, sledding, hot chocolate, baking cookies and watching lots of movies.  The kids and I have been in full relaxation mode.  Dave, on the other hand, has been trekking up to Baltimore.  When they did his blood work they determined that his counts were good enough to start round 2 of treatment.  They have not rebounded back to the “normal” range, but I guess the trial protocol has a lower margin of acceptable.  So, he is back to doing the five consecutive days of SGI injections followed by infusions of Irinotecan next Monday and the one following.  Dave is the first person on the trial not to be delayed by white blood counts.  He continues to be a super star.  They are lucky to have him.

I think we are kind of holding our breath until he has his next scan after this round of treatment – so sometime around mid-February.  In the meantime, we have a bit of positive news.  Dave’s CEA had been on an upward trend prior to starting the trial.  It went from 150 to 201 during a two week time period in December.  This week his CEA was 121.  The doctor told him that we may see it bounce around for a while, but I am taking this as a very positive sign that all he is doing is worth it.  His quality of life has definitely been compromised in the last month, so imagining those tumor cells being knocked out, makes it a little easier.  (Easier for me anyway.  He’s the one dealing with the side effects!)

It’s supposed to snow again tomorrow.  and Saturday.  and Monday.  We may never go back.  I’m okay with that.  I just downloaded a new book (This Is Where I Leave You by Jonathan Tropper).  And also we have cookies.

xoxo,

Robyn

Way Off Week

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Well, the off week is not going to be what I expected.  At all.  I thought Dave would get a bit of break and there would be a brief return to a more normal life.  Not instantly, but I thought by mid-week we might be into a more regular routine.  Dave’s lab results today suggest otherwise.  His white blood cell count was 230.  To put this into perspective, a normal range would be between 4,000-11,000.  His doctor was debating whether to admit him for IV antibiotics.  After a clear chest x-ray, repeat labs and no fever, it was decided that he could come home with oral antibiotics.  However, he is not to go to work this week.  He has been discouraged from being out and about and if he is, he is supposed to wear a mask.  With such low counts, his body cannot fight any infections.  Although he is already grumping about “going batty”, I think that he will follow doctor’s orders.  Next Tuesday, he will head back up to Hopkins.  If his blood counts rebound, then he will start cycle 2 of this treatment.  More likely they will not be where they need to be and he will get a shot of neupogen to boost white blood cell production.  I have a feeling our Netflix subscription will be worth its weight in gold this week.

xoxo,

Robyn

Middle of the Night Shopping List

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When I came downstairs bright and early this morning (only to discover the schools are on a two hour delay!), I found this shopping list that Dave wrote out sometime during the night.  It is a list of beverages that he is hoping will be palatable.

club soda, cranberry juice, limeade, diet ginger ale, diet grapefruit soda, diet cherry 7UP, diet sprite, lemonade, sugar free popsicles

Since his last infusion on Monday, he has been searching for a way to get more liquids.  He is feeling dehydrated but can’t get water down.  When he had Irinotecan previously, he also got IV fluids.  I have suggested that we see if his local oncology practice can do this for him.

The good news is that he was able to get the second infusion on Monday.  He is the first patient in the trial to be able to do so.  His blood numbers are low but not so low as to preclude treatment.  They ARE low enough to make him susceptible to infection.  I am nagging him about being in germy places like Target and Safeway.  The trial nurse even suggested that he wear a mask when he is out and about.  But he is stubborn.  He has been to the Y.  and the mall.  and Target.  I think the need to feel normal sometimes overtakes the need to be cautious.  He is supposed to take his temperature twice a day to make sure nothing is brewing beneath the surface.  So far, so good.

Next week is an off week for treatment.  He checks in at Hopkins on Monday morning for labs and a nurse visit.  Hopefully he will be able to make it into work a few days too.

xoxo,

Robyn