Monthly Archive: June 2015

standard

Long Term Commitment

29.06.2015 Posted in Uncategorized 9 Comments

For the last several weeks we have been back to a familiar place – no news is good news! It has been about three weeks since Lucy’s blood was last sent to Seattle to test for T cells and it was all good news. We still go to the Costas Center at Cardinal Glennon for monthly infusions and labs to check counts. Her counts have been ok, so we are getting out and playing as safely as we can. Until Lucy gets her central line/broviac removed she can’t swim or even take a normal bath, and accidents to or infection of her line remain a significant risk to Lucy. It is a challenge trying to balance fun and caution with an active two year old!

On Wednesday Lucy will have a big test that we have been anxiously awaiting. She will have a bone marrow boipsy and lumbar puncture. These samples along with blood will be sent to Seattle where they will be tested for the presence of her CAR T cells. This marks two months since she received her miracle cancer killing CAR T cells and it is a very big deal. The body’s rejection of these T cells is most likely to occur within the first few months. Dr. G told us that if Lucy still has working CAR T cells in her body at this time then we can feel pretty good about their long term commitment to Lucy. Results will take at least a week, maybe two.

A positive result from this test (and honestly, every test after) will be the answer we seek to our prayer request for Lucy since August 2013 – a cure. We need a cure. Please God, let this be Lucy’s cure.

  Fun at the Magic House thanks to a private event hosted by Friends of Kids with Cancer. I have taken Violet a few times but this was Lucy’s first visit – I think she liked it.    

  

standard

Slow and Steady

9.06.2015 Posted in Uncategorized 13 Comments

We got a call from Seattle today. God bless Heidi, the first words out of her mouth after her initial greeting were “I have good news …” Lucy’s blood test from last week showed that T cells are still there AND still doing their job. Go T cells go!! Thank you all for your continued prayers. Lucy will have a bone marrow aspirate and lumbar puncture this Wednesday along with the blood labs to test for T cells. We are hoping and praying for good results again. 

As Lucy likes to say “Happy Day!”

  

standard

Summer

7.06.2015 Posted in Uncategorized 3 Comments

Spoiler alert: we have no new medical news! Believe it or not, it has been a week and a half since Lucy’s last weekly blood test and we don’t have the those results yet. Our friends in Seattle are keeping us updated, even with no news and we appreciate that. Right now we are literally forced to just “wait and see” how Lucy’s T cells are working. Each blood test result will tell us if we can continue on our glorious blessed path of enjoying “normal” life or if we have to make a plan for more cancer treatment for Lucy. 

Some have asked “did it work?” and that’s a tough question to answer … and we have yet to find a doctor who can either. The simplest, true answer is “we’ll see”. Honestly, we believed that “it”, chemotherapy, worked, but it didn’t. There is never a guarantee, and results are really unknown in this study. Lucy is patient number 26 in this trial, and she will be followed by the doctors and researchers who are running this trial for 15 years. Not a lot of history and still a long way to go. Although the success of this treatment is measured in baby steps, there have certainly been opportunities for failure along the way so far, and our Almighty Father has sheltered our Responder completley through each obstacle. Lucy has been in remission since February, which is great, but with cancer, remission is not the same as “cured”. We will celebrated that glory when Lucy hits that very important 5 year cancer free milestone. We had to reset the start clock to 2015, but that’s ok – save the date, party in 2020! We fought hard for this treatment for Lucy and we believe this is her path to a cure. 

One thing we can report is thst Lucy is feeling great! Wow, this girl is active! Even during her good days in the past, it has never been like this. It has been one month since her last dose of chemotherapy and we love her energy! She is talking, running, jumping, laughing, eating and sleeping fantastically! Poor Violet is having to adjust quickly to a rambunctious little sister following her around … and hitting and biting her! Lucy says “sorry Vi” so many times a day she almost doesn’t have to be prompted anymore. Lucy copies every move and repeats every word from her sister, which drives Violet crazy. We tell her that Lucy is just trying to learn, and she is catching up fast! She rode a scooter like she had been doing it her whole life (thanks Amanda!) and went pee pee in the potty once so far (thanks Amy!). Lucy’s immune system is still deficient and recovering very slowly, but we are in the best season for it – warm weather to be outside and far from cold and flu season.