Day +94

Bill is still doing GREAT!

Hair is growing back and needs to shave!   Taking a little rest on the couch (probably watching a game show or 2)



He and I went to a small par 3 golf course Wednesday to see how he would do!  It was not a smart day to go out given that the heat index was so high!  But non the less we took out a cart, I drove and he play about 10 holes.

Thursday he went out on his own and played the short course again this time 18 holes, of course, with a cart!  His goal is to play 18 on a more challenging course without the cart!  I know he will attain his goal,  may be not this season but in many to come!

Monday he will get his first round of the targeted drug Rituxan and hopefully the insurance has approved his oral drug.  These together will keep the monster at bay! 

He has decided to make some fleece blankets to take to the Chemo Center.  He always took one that Molly made him because he always got so cold.   It was very fun to see him working with fabric and it turned out great!




He is still planning on returning to work on August 13th.  His first trip out, to Atlanta, at the end of the month I will go along. 

Update on other issues:

Our newest friends we met at Northwestern:

Scott is home in Wisconsin, just celebrated his 50th Birthday, Leukemia free and doing great!

Don is also doing great! He, like Bill, received his own stem cells and  his test results are showing he is in complete remission!  We met him and his wife, Sue, for Coffee last week to catch up and compare notes!

Aimee is home in Chicago.  We met her at the clinic last week for a real hug and to catch up in person!  She was struggling with severe fatigue but they adjusted some of her meds and she is doing much MUCH better!  She had her Biopsy this week so we are anxiously awaiting some good news!

House still on the market with not much activity!  We have lowered the price as much as possible and St. Joseph is buried!  Not much else we can do!

Molly is studying 6-8 hours per day getting ready for the MCAT on August 16th.   Please keep her in your prayers!  Her nails are getting shorter and shorter!

I am still looking for employment, enjoying being home with Bill and Molly and trying to loose a few pounds!

Our very dear friends from California are setting out tomorrow driving Route 66 to see us!!!!  Can't wait!!!!!!!

We continue to be so so BLESSED!  

Thanks for keeping up with this crazy Journey and please know that ALL of you remain in our prayers!

Day +87

Progress.................Progress......................Progress!!!!!!!!!!!!

Each day Bill gets a little bit stronger, a little less tired and a little more like his old self! 

Yesterday Molly and I took him out to the driving range and we all shared a bucket of balls!  He did Great, Molly did Amazing and well........ we won't talk about my results!   haha   It finally cooled off a bit so it was a very nice time!

Today we made the full circle back to Bill's original oncologist!  He will be handling his after transplant followup!   We are waiting for the insurance company to approve a new oral drug that will continue to target the little bit of cancer still left in his bone marrow.    Since his type of cancer is very VERY rare there are very few drug protocols for Waldenstrom.  This drug is extremely expensive because it is still considered  new on the market and currently used for a similar cancer to his so our doctor may have to convince them.  We are not concerned as the insurance so far has been fabulous!

So the plan is:

Oral drug Revlimid 3 times per week
Infusion of Rituxan 1 time per month  (takes about 4-5 hours)

He will do this for the next six months.  At that point his two doctors will evaluate and then we see where we go from there!!!.

Bill is planning to return to work on August 13th.  We are still trying to sell the house and planning to move more toward retirement at least for him,  Insurance right now is what is dictating some of our decisions.   

Each day it seems more and more  things continue to move in the right direction and we are so thankful for God's continued blessings!

Day + 69 A Day to Celebrate

A Day to Celebrate.


We received the results of Bill's biopsy.  His cancer is now detected in less than 5 % of his bone marrow!!!!!!!!!


   YAY!!!!!!!!!!! 


When this Journey began is bone marrow was 90 % cancer.  The intensive chemo knocked out a huge portion of it and the transplant took care of almost all of it.  So YES he is now considered in REMISSION!

He now begins the maintenance part of the journey to keep him in this state of remission for a long LONG time.  

Thank you Thank you Thank you for all the positive vibes and prayers!!!!

I have felt such a strong connection as a result of keeping this blog. You reading it has and continues to give us all strength in so many many ways.   I plan on continuing  to post updates but PLEASE bear with me as they may be simply what we had for dinner! 

Day +67

LESS AND MORE...........

LESS
          napping
          tiredness
          bruising
          fear of being around too many people

MORE
          getting out
          energy
          walking
          hair
          hope
          thankfulness
As this journey continues we realize it is just part of the bigger picture!  Life brings us all many ups and downs but it is how we face them that can make a difference.  So Much easier to handle the ups but because of all the LOVE, SUPPORT and PRAYERS the difficulties of this past year have brought us many blessings, that have made everything so much easier.
Monday we will be getting the results of Bill's bone marrow biopsy.  This will tell us exactly how well the transplant worked.  We hope and pray to hear the word REMISSION!  Regardless of the results it will put this part of the journey behind us so  we can move forward and continue to plan for the future.

Thank you for all the continued prayers.  It means so very very much.

Day +59

Biopsy yesterday went well!  This was the first one at Northwestern and Bill was very happy!!!!!  Not only did he have his usual anti-anxiety drugs but they gave him some iv pain meds.   When he was all finished he was a BIT woosie!!!!  We let him sleep some of it off before I tried getting him to the car!    Jenny received an A+ for her excellent care of Bill.   They also have a lab technician there who makes the slides right on the spot as well as an additional nurse practitioner for an extra set of hands.  We are so very very blessed in having Northwestern for his care.
Now................ we wait until week after next for the results!

Tonight Bill and I are participating in a RELAY FOR LIFE event!     Molly was the Fundraising chairman at  her University, Xavier,  for their event this past spring  and is now volunteering at various other RELAY FOR LIFE events over the summer.  She encouraged us so we are going to walk the survivor lap at the opening ceremonies!!!!!!!!!!!   Thanks Molly for your commitment in not only fighting for a cancer cure but in your dedication to helping others and making our world a better place!

Day + 57

Sorry I have not posted in awhile but we don't have too much going on!  Bill seems to be getting back to his old self a little more each day!.  Tomorrow he goes for his bone marrow biopsy.  Not a pleasant procedure so he gets pretty nervous each time.  We have drugs to help him through it!  Then we wait................. until July 3rd for the results.  This biopsy will tell us exactly the extent of the cancer.  We are praying for complete remission.   It will be a very long week+ so I will try and keep him as busy as his energy permits.

We have had only 1 showing of our house.  Not a big surprise and the feedback is exactly what we already knew......over priced and no basement!  We are loosing a ton at this price so not sure how much more we can lower it and I can't dig a basement so........ someone will have to come along like us who don't care about basements and love the big windows and backing up to nothing!
Molly is studying like crazy for her MCAT in August as well as busy working and shadowing a pediatrician this summer......busy busy girl!

I have decided I have no more excuses for not exercising so I am trying.......  we will see how long I can keep up with it.  

Thank you for keeping us all in your prayers.  It truly keeps us going knowing how many people are supporting us emotionally and spiritually.

Kay

Day + 48

Out in the Public.............

Bill went to church yesterday for the first time in many weeks!!!!   It was indeed a very special day as after mass they had an adoration procession for the feast of Corpus Christi.  One of the many blessings we discovered shortly after his diagnosis was the adoration chapel at our parish.  It was something we knew existed but like so many things we took it for granted and never took the time to visit.  It became a frequent stop for us either before or after doctor visits and provided both of us with great peace.

He had his blood draw today and platelets and white cells are still on the rise!!!  Red counts are proving to be VERY stubborn but holding steady!

On the way home we picked up his bike at the bike shop after having it tuned up! New chain, new brakes, plenty of air in the tires and clean of cob webs so he is all set!   It made me VERY nervous to see him ride it home the 2 blocks.........he made it all the way to the bottom of our hill.  That took some walking to get it home but he made it home safe and sound and seems to be really looking forward to his evening rides with Molly!   Over the past many years during the summer they would ride to the candy store every night on their bikes!  Since our local candy store is now closed I am hoping for a healthier destination and know he will be in good hands with Molly by his side!