Adventure Day One

April 11, 2010 –Rules in life help us stay on our path; navigate us to our destinations without getting in trouble.  They give our life structure and in some ways comfort, that we are doing the right things.  While on this journey with leukemia, the rules get written anew almost everyday; new research is done, and new ways to battle the disease are discovered.  So really there are no rules, just guidelines.

Getting ready for Rickey’s third round of consolidation therapy; it is just another Monday morning; a now regular routine.  We have two black roller suitcases packed, one with Rickey’s hospital clothes and personal effects; slippers, hat, foot cream, toothbrush; and one packed with Rickey’s life; his leather prayer box, the family pictures, small nick-knacks that will fill the window ledge with love and of course, the CD player to fill the room with healing music.  All these things help make the hospital room feel familiar – hard to believe we had reached a point where packing for the hospital was a routine. 

March 2, 2003 1:23 PM 

Rickey writes: Back to the Hospital - Just a note to let you know that I go back in the hospital tomorrow for 5 days (probably) for routine chemotherapy.  Should be out next Saturday.  Thanks to all of you for hanging in there with me through this whole thing.  After this one, only one more to go.  Love, Rickey/Dad

March 3, 2003 5:27 AM

PJ writes: Monday’s Schedule - Good Morning, It always comes as a surprise when it is time to return to the hospital.  I have come to realize I block out the fact that Rickey is sick and convince myself life is just “normal”.  But there is nothing routine about going and having your husband get tubes put in his chest and poison pumped into his blood for five days.  I am more worried this time because last time the Nadar was not easy and with each round a Nadar must come and it is the luck of the draw what will be the infection this time.  I have packed up the office to take with me today, we will be leaving at 6AM and get checked into the room and my cell will be on.  We have chosen not to have my parents stay at the house with the dogs until the 14th, so I will be traveling back and forth more often.  Please remember us in your prayers this week and hug those you love and rejoice in their touch, nothing in life is a given.

March 6, 2003 12:01 PM

Rickey writes: Just an Update on My Hospital Visit - I’m on my fifth chemotherapy, 3rd of 4 consolidation therapies.  All is going well.  No side-effects, no problems after four of six doses.  The hospital staff has been greatly reduced as a majority of them have shipped out to the USS COMFORT hospital ship this week.  The service is still good; the remaining staff is working hard.  I plan to get out on Saturday for a week to 10 days.  Hope all is well with you.  Stay in touch.

March 15, 2003 1:31 PM

PJ writes: Adventure Update Middle of Round Three - Dear Friends and Family, Just an update on our family adventure; Rickey has returned to the hospital and is in his Nadar (lowest point) for round three of his consolidation treatment.  His white blood cell counts have dropped quickly this time; in fact, this is five days early for his fever to hit.  He was admitted late Thursday with a fever of 101 and has been on broad-based antibiotics since then.  Rickey is doing well and they did get his fever to break last night.  His morning counts show that he has started to gain his white blood cells back already and he is resting comfortably for a 7-10 days stay at Bethesda.  Each round is a little different, and this one came on quicker than expected, but we were ready!  One more round after this one and we are done with consolidation treatments and on to recovery.  This new state of normal isn’t always so normal, but we have our eyes set on the future which looks very bright!  A BIG thank you to all for your continued support and prayers…we could not do this without you.  Love and bear hugs to all, PJ

March 18, 203 10:36 AM

PJ writes: Rickey’s Condition - Just a note on our daily adventure this round. Rickey’s fever keeps coming back and now they say he has a third bug, the fecal one like last time that goes to his blood.  He is continually rolling on his fever, normal to 101 to normal every day.  They finally decided to take his triple lumen line out of his chest just this morning, and then continue to monitor his vital signs.  He is in good spirits, but tends to fade later in the day.  Please pray for his recovery this week; I really want him home before too long. 

March 28, 2003 5:42 PM

Rickey writes: How Things are Going Right Now - Howdy, well, after the Drs. convinced me that I should only have 3 consolidation therapies because of the risk of infection, they did a complete reversal and said I was young enough to handle the risk and that it was no greater risk than before.  Also, they believe 4 are better than 3 therapies now.  I wonder if they listened to me, boy that would be scary!

Living with leukemia makes you understand there really are no rules to what is right or wrong, it’s all about what works.  This is representative of a “normal” routine… we started off thinking one thing, but because the infections were so numerous and this round was so rough on Rickey’s health, the doctors decided this would be Rickey’s last round of consolidation therapy.  The doctors had to rethink the rules, and then change the rules again.  Rickey asked for one more round of consolation therapy not knowing what was really causing his fevers; the fourth round would prove to be the roughest round yet.  When you expect one thing based on the rules, but life serves you up something unexpected; how do you deal with change? 

Until our next blog – remember life is an adventure, embrace the journey.  You can make a difference one day at a time. 

Share your adventure with us!

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