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I was a thirty-three year old stay-at- home mom of a two-year old boy when I was diagnosed with HCL. 

In late April 2003, I was eleven weeks pregnant with my second child when a routine blood test revealed a low platelet count of  97K.  When a second blood test came back even lower my OB/GYN referred me to a hematologist.  Since I was exhibiting no other symptoms, we all suspected ITP (Idiopathetic thrombocytopenia) possibly induced by the pregnancy.  Leukemia/lymphoma was not even on the radar, but my hematologist wanted to follow me closely throughout the pregnancy to monitor my counts. 

In July of 2003, as my platelets continued to progress downward, my WBC and RBC also began to decline and my doctor decided it was time to perform a bone marrow biopsy.  Due to the fact that I was late in my second trimester of pregnancy I was unable to be sedated or properly lying on my stomach for the procedure.  All I had for comfort was my husband’s hand and gentle voice.  The procedure was really not that bad without sedation and the nurses and doctor joked at the fact that I was smiling and talking through the entire thing.  A week later the news came, HCL with about 30% marrow infiltration.

Immediately my pregnancy was deemed high-risk as there really was no information available about the effects of HCL on a pregnancy.  I was referred to several specialists – perinatologists, oncologists, etc.… and although my hematologist had treated HCL patients before, he felt it better to send me to one of the most specialized cancer centers in the country. Fortunately I live in the same city where the facility is located.  The doctors there (my treating doctors) all concurred that I did not need immediate treatment and that priority number one was the birth of my child. Once the shock of the diagnosis had settled the only thing to do was wait.  This can be quite frustrating when you are not used to hearing the words “wait” and “cancer” in the same sentence.  But my family and I turned to prayer and human resolve to get us through the next few months.

I am happy to report that the pregnancy went off without a hitch even though my counts continued to plummet.  On November 20, 2003 my husband and I welcomed our second son into the world.  The doctors took him ten days early by cesarean and he was a healthy 8 pounds even.  Unfortunately I was not able to be awake during the procedure, as my platelet count was only 38 K.  I was transfused before the procedure but it only pumped them up to the mid-sixties, too low for an epidural.

After the birth it was home to heal from the procedure.  I was in great spirits and felt better than I had for months before.  My doctors think it was because I was no longer trying to physically sustain a pregnancy.  My counts still hovered below normal and we were talking about beginning treatment in March or so when the unexpected happened.  I began experiencing back pain that I took to be muscular in nature.  Even though I had lost certain range of motion, I could avoid the pain if I didn’t do certain activities.  However, a tell tale sign that it wasn’t muscular was that it always felt worse in the morning when I first got up.  After three weeks of escalating pain, my husband and I decided it was time to see a doctor about it.  That morning, February 16 2004 , as I picked my baby up from the crib I felt a sharp tinge of pain in a new location in my back.  I was only able to walk about 15 feet before something gave and brought my whole body crashing to the ground, baby and all.

In intense pain and unable to stand, my husband was finally forced to call for emergency help.  I was rushed to the ER where I underwent an MRI that revealed compression fractures in my vertebra.  My back was broken and I was no longer able to support my own body weight.  I was immediately transferred to the Cancer Center where I was to be treated and what followed were seven days of the most excruciating pain I had ever been in.  For the first five days I underwent massive testing – multiple MRIs, CT Scans, Bone Scans, X-Rays, ultrasounds, etc.…  When the MRIs confirmed the fractures and the bone scan revealed extreme osteoporosis, I underwent another bone marrow biopsy to rule out a double malignancy.  This time the biopsy came back straight HCL with 85% infiltration.  Conclusion, although HCL is not known for bone degeneration, when coupled with a pregnancy and breast feeding the possibility certainly exists.

The doctors decided I would be treated with cladribine (2cDA) immediately, but first we must fix the back. An orthopaedic surgeon specializing in spinal injuries was called in and I underwent a lapriscopical surgical procedure known as kyphoplasty to repair two of my vertebrae.  It was supposed to be miraculous in its pain relief.  The day after my surgery I began chemo through a double PIC line in my arm.  After three more days of what seemed to be no relief from the back surgery and excruciating physical therapy I went back into the MRI only to reveal two more broken vertebrae that were obscured by the first two.  Four days into chemo, with my white counts rapidly dropping, they wheeled me back into the OR for my second kyphoplasty.  They never even stopped chemo.

After the second surgery, it was miraculous.  The excruciating pain I had been in was virtually gone.  Now I was just sore, weak, and suffering from flu-like symptoms.  I had bone pain, no appetite, and a moderate fever for a few days.  The early days during and after chemo are a blur to me due to the pain meds and the cruddy feelings, but all in all, it was not as difficult as I had imagined or as others on my floor were enduring.  I had very little nausea and in about four days after the treatment was able to walk the floor without my walker and begin eating food again although I could barely taste anything. 

Unfortunately, I was not going home anytime soon.  My white cells dropped to .02 (nonexistent) where they stayed for the next three weeks.  My other counts weren’t so great either and I underwent a couple of transfusions.  Because I was already on high dose antibiotics from the surgeries the doctors had no line of defense should I contract a secondary infection.  I was trapped, quarantined to the hospital floor and unable to see my two young boys for five weeks. 

About three and a half weeks after my arrival I began nupogen shots to kick-start the WBC production.  They didn’t work as quickly as hoped for.  I also developed an unbelievable rash that began on my torso and spread throughout my entire body, except my face.  My skin turned bright red and even purple in some places.  Although it didn’t itch too badly it would at times feel like extreme sunburn.  The doctors speculated I was having an allergic reaction to a medication, but which of the fifteen I was on, was impossible to tell.  The rash subsided in about two weeks.

Five weeks after I was admitted (and three days before my firstborn son’s third birthday), with a WBC count of .03 I finally convinced the doctors to let me go home.  I gave myself nuepogen shots for two weeks that followed and reported back to the hospital every three days, but I was at home and nothing felt better in the entire world.  And instantaneously from the moment I came home, my WBC count began to rebound.  The months to follow were obviously a slow recovery as I not only had to rebuild my immune system but also had to regain my strength and muscle mass that deterioted from lying in a hospital bed for five weeks.  But I never contracted an infection or was ever re-admitted to the hospital. 

In hindsight, the time seemed to fly by and by the summer I was feeling strong and rejuvenated.  I was seeing the doctor once a month for counts and Zometa infusions to help my bones.  In June 2004 a third biopsy revealed I was clean – complete remission.  I kicked it into overdrive then and began to exercise regularly, eat right, and focus on my family.  By August I felt nearly 100%.  Then we received some more unexpected news.  In September, six months after my chemotherapy and still undergoing Zometa infusions we found out that we were pregnant with our third child.

In previous conversations with the doctors, none were ever able to speculate too much on Cladribine's effects on fertility due to the fact that not too many women of childbearing age were ever exposed to it.  Although we were fairly certain that I was not infertile from the treatment, my husband and I had decided, in light of the disease, that we would not take the chance on more children and were taking the appropriate precautions.  But, if there is anything I have learned through this whole experience it is that sometimes God has a different plan for us.

The pregnancy was closely watched as not only were we concerned about the baby’s health but the strength of my bones as well.  I stopped the Zometa treatments and was unable to undergo a Bone Density Scan while pregnant so all we could do was pray that I was strong enough to sustain a pregnancy.  As each day progressed we grew more and more confident that I was.  My counts remained consistent.  My reds and whites were healthy and my platelets hovered around 100K. 

My amniotic fluid continued to steadily decrease in the last weeks of pregnancy, but I made it to exactly 38 weeks before the doctors decided to take the baby.  On May 14^th, 2005 I gave birth via cesarean to a beautiful healthy baby girl who weighed in at 6 lbs. 5 ozs.  God had truly blessed me again!

Now here it is almost three months later and I feel great.  Katie has grown tremendously and is the perfect picture of health.  I have healed well from the delivery and am now waiting to see an endocrinologist who will decide where to go from here as far as my bones are concerned.  Most importantly however, is that there is no sign of cancer anywhere and for the first time since my diagnosis, my platelets reached a normal level on July 7^th when my labs revealed a count of 159K. 

Now, I certainly don’t profess to know the true secret to life, but I do know that we all have no control over what may finally take us in the end, or more important, when the end may be.   And I do know that, whether you go by a car accident tomorrow, leukemia in ten years, or quietly in your sleep at age 99, the days spent are not worth your breath if they are not filled with love and joy.  In many ways HCL has been a gift to me, yes, a gift, in that I truly no longer go through a single day without realizing the true gift of life I have been given. And I am now able to close my eyes at night and simply listen to nothing else but the sound of my breath and know that in the very simple act of taking in air the monumental blessing I have been given.  How lucky I am!

Kristin Brenneman    Jbrenneman@mindspring.com