Saturday, June 6, 2015

First Week Home...

FIRST of all... thank you, thank you, thank you!!!  So many people called, emailed, offered help, offered bone marrow testing, prayers (in word and literally), tears, and Diet Coke for mom :)... Our hearts are full!!  We are blessed with so much love!!!  We are just a little family in an apartment in Greenfield, Wisconsin... and it's bursting at the seems with gratitude!!  

Here is this week's update.  Some of this was covered in my last post - but figured it was easy to do a week at a time... 

MONDAY:  Brett arrived home safe (I posted the pics the next day I believe). We really just enjoyed time together... and later he was released as a full-time missionary.  It was bitter-sweet.  He's super-positive and in great spirits.

TUESDAY:  The PET scan, which included a 2-hour wait.  For those fortunate enough not to know - they do an IV of some sort of reactive stuff that will react to muscle movements - so he has to lay still in a room for an hour before the scan.  Do you know - that sweetie had the nurse come and get me so he could tell me that I could go get lunch - I didn't have to wait there for him.  Honestly - he's the best patient in the world. My friend Lisa L was with me... we just played on our phones and talked.  PET scans are scary things... it's a special all-body scan to see where all of the cancer is located.  He did well... and then he was super hungry afterwards - because he couldn't eat or drink for 6 hours prior to the test.  So we went to Red Robin afterwards to fatten this kid up. He's lost 20-25 pounds since we saw him in March.  He weighs about 150 pounds now (and he's over 6-feet tall).  I posted this pic in the last post - but thought I'd put it here also. :)

WEDNESDAY: Froedtert Cancer Center

Labs and our first visit with Dr. Tim Fenske.  After Brett got done with whatever blood they needed, the lymphoma coordinator, Valerie, met with us in the lab area.  She was the one I talked to and got everything arranged for us - she is terrific! She gave us all hugs and told us if we needed anything - to let her know.)  Then up to the clinic... Here is Brett posing in the waiting room.  He was excited they had hot chocolate!!  He's a character:
Then we went to the clinic and met with our nurse who spent a long time with us going over some information - and how to get a hold of people as we go through the process... etc. Gave Brett a binder with loads of information.  Then we met Dr. Fenske.  He looked over all of the images with us and told us everything.  We were disheartened to realize that he still hadn't received the final reports and biopsy slides from Texas - but he went over everything else he saw.  It was actually a relief to see the PET scan reveal nothing new.  He said the cancerous lymph nodes are very heavy throughout his neck, chest and some below the diaphragm.  He seems to be "Classic" Hodgkins Lymphoma - Stage III, but we would find out after the final reports from Texas. Here are some common questions and info.  I may - or may not- have gotten all the particulars right - but this is what we think we know so far... 
TREATMENT:  Treatment will consist of a 4-drug cocktail called ABVD.  It's infused every 2 weeks for 12 times (and consequently is 6 "rounds" of chemo).  24 Weeks.  Radiation isn't ideal since the disease is pretty widespread - but they will check the PET scan done halfway through his chemo and if there are more resistant tumors, then radiation may be needed.
CLINICAL TRIAL:  There is a clinical trial that substitutes the "B" drug in the ABVD cocktail with an "R" drug.  The R drug is usually used after ABVD is completed and not successful.  So the idea is that patients with Stage III or IV might benefit from introducing the R drug with initial treatment.  Brett is an ideal candidate for that.  BUT because it's under board review to expand the number of patients - it won't be open until June 15th.  So Brett can't start treatment until June 16th.   
Brett is doing well.. his blood counts are great, he's otherwise "healthy" and right now his body isn't under much stress.  They will do more tests next Thursday to find out if that is still the case.  If it's not - or if we see any changes - they will not do the clinical trial and start him on the ABVD chemo immediately.
PROGNOSIS:  The prognosis with Brett's health and state is 70% cure (CURE!) with initial treatment.  It's aggressive treatment - but well-matched with the disease.  Of those that aren't successful, then they have further chemo (aggressive) and stem-cell transplantation.  Of those patients, there is 50% cure/success of putting the disease in remission.  And then after that, Dr. Fenske said there is still further treatments that can be done. 
Brett posing with his binder.  haha!
It was a 3-hour appointment!!
MISSION:  We asked specifically if returning to his mission is possible.  He said if all goes as he suspects - then YES!  Likely 6 to 8 months, we'll know for sure.  NOW... if at that time, Brett can't, or feels that something has changed, and doesn't go back out - there is no dishonor.  He is - at this point - considered a "returned missionary" with honorable service.  However, he really wants to go back to serve the people of Texas.  Our focus - of course - is getting Brett healthy, so his future is free for him.
CHURCH/GERMS/PUBLIC:  Brett can go places.  But no shaking hands or hugs.  His immune system is compromised - so we have to keep him away from coughs, sneezes and other people's hands.  Here at home - we are all on multivitamins - and we are also going to avoid a lot of contact so WE can stay healthy also.  Those that are not feeling 100% can't visit. :(
There was a LOT of information covered.  Dr Fenske acted as if we were the only patient in the world.  He was fantastic and answered a LOT of questions that we had.  Brett also had to go to Cardio to get a baseline EKG done.   

FRIDAY:  Brett is fatigued... sleeping a lot.  I think it's normal?  I called the nurse to #1 - see if they heard from Texas and if the final lymph node and bone marrow biopsies are as we thought; and #2 - to see if Brett's fatigue is "normal."   The nurse called back... then Dr. Fenske called me this evening and talked to me for awhile!
I'm sure I'll frequent a LOT of these!!

  • Texas' finalized results are in and have been analyzed by Froedtert (standard procedure)!  Brett, indeed, has classic Hodgkins.  The bone marrow came out okay - so he is NOT Stage IV. So that's great news!  
  • Fatigue is normal.  Brett's anemia was analyzed and found to be disease-related.  This is also good news!  It means he doesn't have something else going on (that we know of).
  • It looks like insurance will cover the clinical trial (well - the chemo drugs are free, I think - so that's a good thing!).
  • Dr. Fenske tried to get the review board of the study to open it earlier - but it was a no go.  Brett is still scheduled for 6/16 as a target start date. 
  • Visit to doc and labs on 6/11 to check to make sure Brett's holding up okay, or chemo will begin right away and the clinical trial will be abandoned (for him).
THAT'S IT for this week!  Oh... and Friday we had our red truck towed to the shop. And then my black van got a flat tire!  We pumped it up and prayed to Costco and got 2 new tires.  We also got some other bad news on Thursday night - but it's unrelated to Brett.  We'll know more about that in the days to come.  My goodness!  Too much!

For those keeping track... here is the 2-Week Test Count:  PET scan, CT scan torso, CT scan neck, Chest x-ray, Echocardiogram, EKG, Bone marrow biopsy, lymph surgical biopsy (entire node), blood tests, blood tests, blood tests... and did we mention they took some blood tests?

Look for Brett's post coming up this weekend!!

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