Tomorrow Clark will start an additional chemotherapy, called Cytoxan. It will also be his last day on Fludorabine and Campath. Triple chemo day…
Cytoxan is known to be very hard on the body. Especially on the bladder. To prevent bladder damage, starting tonight at 10pm, Clark will be given a high stream of IV fluids to keep him urinating. This will help Clark constantly empty the Cytoxin from his bladder instead of letting it sit there. Letting Cytoxin sit in bladder can cause bleeding and scaring of the bladder. Clark’s diaper will fill up with urine so quickly that it will need to be changed every 1-2 hours around the clock. And there are 4 days of Cytoxin treatment!! Thankfully the nurses will help change them, especially at nighttime.

Every morning the nurses do a blood draw. This is to check his blood levels (RBC, WBC, platelets etc..) as well as how well his liver is functioning, his alkaline, calcium, phosphorus and many many other levels. Over the last few months, we’ve been very focused on watching his platelets, ANC, Hgb and neutrophils levels…
…But today we were curious. Which of these numbers are we watching to see how well Clark is progressing? What are we waiting to happen and what numbers can we watch to know when we get there?

As it turns out, we are watching Clark’s Lymphocytes. This is a measure I had never watched (or heard of) before. Lymphocyte numbers need to be at or near 0 to transplant bone marrow. Lymphocytes are what fights the donor marrow and can cause HvGD. Clark’s Lymphocytes are near 0 now (0.01 as of this morning). So, apparently he is doing great. Neutrophils and ANC don’t determine whether Clark is ready for transplant, but they will still go down with the use of chemo.
So I had to ask… If he is at 0 now, why bother with Cytoxan?
There are a lot of unknowns about BMT’s and the chemos used. This is why all hospitals have slightly different methods for their BMT patients. For some reason, using Cytoxan even after lymphocytes are 0, helps prevent GvHD. One belief is that there might be extra lymphocytes in tissue, which can’t be measured (yet)….and the Cytoxan most likely kills them.
Another interesting thing came up today. Clark’s blood pressure has been slightly elevated. My first thought was, so what? Most American’s (and Canadians) have high blood pressure. We can put him on a diet and have him workout on the stairmaster, right!? (Just kidding… the treadmill is way safer for kids under 2 years old, duh!)
As it turns out, high blood pressure is a bigger deal with Clark than it is with “normal” people. Apparently since he now has very low platelets, having high blood pressure can greatly increase a persons chance of internal bleeding. The high blood pressure can cause bleeding in the veins themselves (since they can’t repair themselves). Yikes! It turns out that the steroid Clark is on (Decodron) can temporarily raise blood pressure. So yet another medicine is required to offset the problems of a medicine given to offset the problems of another medicine (and so on, and so on…) As such, Clark has started taking a very small dose of blood pressure medication to alleviate the problem. Since tomorrow is his last day of taking Decodron (since it is also the last day of taking Campath, the reason he is taking Decodron), I’m hoping we can unwind this twisted mess from the axle shortly.


Hi beth and family, I have been reading up on all you are going through and we are sending all our love your way! Is there somewhere I can send a toy or donation too? Please let me know if there is and if there is anything we could do at all. My heart is with you ♡
Love Jillane and Mason
There is a book which recounts the history of the treatment for cancer in the USA and elsewhere. It has the title THE EMPEROR OF ALL MALADIES and is written by Siddhartha Mukherjee. It is both fascinating for its historiography as well as its eye opening content on how profound new discoveries have to battle for recognition. It resonated as I read about the complex balance of potent medications which Clark is going through in the countdown to his “birthday”. Scary, dramatic, so full of uncertainty… we all are holding our collective breath and have as many fingers crossed as age and flexibility allow!
So great to hear that Clark’s Lymphocytes are at zero. Right on big Buddy! Praying that tomorrow’s triple chemo day is uneventful, with everything going according to plan. Hugs and love to all.
I wish I could jump through this screen and give you both a big bear hug. The Iv and diaper changes sound tough. Hang in there.
Agreed that so happy Clark is responding well and lymphocytes are almost zero! Go lil’ champ!