Sometimes Life Takes a Turn Which Truly Demonstrates Just How Unfair it Can Be...

Sometimes life takes a turn which truly demonstrates just how unfair it can be.  No sooner did we get Brady home from the hospital diagnosed with a very treatable and curable disease when we received a phone call, “Brady’s cancer did not respond to the chemotherapy, we need him back here tomorrow”…  And thus, continued the journey of a million roller coast rides for my remarkable baby who never let his horrible disease destroy his soul.

WEDNESDAY, OCTOBER 21, 2009 9:22 PM, EDT 

Brady got home tonight just in time for dinner.  He had a very special dinner consisting on pizza and ice cream.  He is sleep now and we are just so happy to have him home...

THURSDAY, OCTOBER 22, 2009 10:34 PM, EDT

We had a truly wonderful evening!  Brady, Sherrie and I went for a twilight walk on a beautiful Indian-summer evening.  Brady in his back pack with his red hat on calling out woof-woof at every dog he saw. We came home and gave Brady a bath in which he splashed and laughed.  We got him into his pajamas and he sat on the couch with me and drank almost 2 bottles of milk.  It was just a perfect evening.  Unfortunately, it will have to last for the next several weeks.  Brady is going back to the hospital tomorrow morning.  While his doctor is still not sure exactly what type of leukemia he has (ALL or AML) Brady’s condition has not improved at all after the first round of chemotherapy.  So, Brady will now be treated as though he does indeed have Acute Myeloid Leukemia (AML).  This means a much more intense chemotherapy protocol which elevates the risk of infection and necessitates the need for 4-8 weeks of hospitalization.  Please keep Brady in your thoughts and prayers he’s going to need all the help you can give him to get through this.

FRIDAY, OCTOBER 23, 2009 7:08 PM, EDT

Brady is back in the hospital and it feels like we never left.  He has been diagnosed with ALL/AML with most likely his own sub-type but very close to AML sub-type M04.  What all of this means is; he is a very sick baby with a very rare illness.  He has an outstanding medical team focusing on his case.  His primary physician is Dr. Richard Drachtman manages the Pediatric Hematology/Oncology Department at BMS Children’s Hospital.  Dr. Drachtman is in daily consultation with Dr. Stuart Winters of the University of New Mexico, Dr. Stephen Hunger of Children’s Hospital Denver, Dr. Elizabeth Raetz and Dr. William Carroll of NYU.  Needless to say, Brady has a team of the very best Pediatric Hematology/Oncologists in the country. 

Currently Brady is again “hooked up” to an IV pump and is receiving zofran, pepcid and vistrail which are all pre-chemotherapy drugs.  He is also getting his first round of eyes drop.  He will be receiving eyes drops every four hours for the next 12 days.  The drops are to prevent conjunctivitis.  This should make for some very interesting sleeping patterns.  I had the opportunity to actually administer the drops and Brady is just a special kid – no crying, and very little fussing.  

He will also be receiving an IV push of Cytarabine followed by an IV bag of Daunorubicin which will take 6 hours to complete.  When that is completed the final 4 hours application of Etoposide will begin. 

The Cystarabine will be administered twice daily for the next 10 days, the Daunorubicin will be done today and the day after tomorrow and the Etoposide will be once a day for the next 5 days.  Then we wait until Brady’s white blood count has recuperated sufficiently (usually around a month) and it’s back home for 2 to 14 days and then we start this treatment all over again.

We will follow this protocol for 3 to 5 courses and hopefully have this beast in remission.  Once remission occurs discussions of bone marrow transplants will take place.  Transplant discussions will start in earnest sometime around the end of January.

If we need a transplant we have been assured finding a match will not be a problem.  Brady was “typed” today and this will confirm our assumption regarding a bone morrow match.  Anyone who would like to register as a bone marrow donor can do so on-line, just go to www.marrow.org/ and follow the instructions.  Registering as a bone marrow donor will help someone but not necessarily Brady as donors are on a random basis.

Finally, this is going to be an excruciating and exhausting experience for us but I am so confident Brady will win this battle.  He is a strong, happy and loved child; please keep him in your thoughts and prayers…