Mixed Lineage Leukemia

Tests now confirm that Kate has Mixed Lineage Leukemia Rearrangement (MLL-R).  Chromosome 11 has an irregular gene ("leukemia gene") that has attached itself to another irregular gene.  Infant MLL is an aggressive cancer and survival rates are close to 40 percent.  This type of leukemia has characteristics of both Acute Lymphoid Leukemia and Acute Myeloid Leukemia, but she is being treated with the ALL protocol.  Kate is on day 22 of a 33 day "induction," another term for her first round of chemotherapy.  After this induction phase has ended and Kate's blood and platelet count have recovered, she will have a bone marrow draw to test her response to treatment.

Kate is a little superstar!  She never ceases to amaze me with her patient endurance.  She has tolerated the first round of chemotherapy considerably well.  She is taking six medications for her chemotherapy and will receive her third spinal tap at the end of this round.  She also takes several other medications to counteract symptoms (three antibiotics, anti fungal, high blood pressure meds, pain meds, anti nausea, Benadryl...am I forgetting any?)  Even though the chemo is highly toxic, she seems to suffer the most from the steroids.  She had a little temper for a few days, but its leveled off and sweet Kate is back.  One of the doctors told me she's never seen a baby so happy on steroids.

Luckily, we haven't seen any mouth sores or nausea.  Unfortunately, Kate has the worst diaper rash in history.  Since she doesn't have any immune system, it won't heal until she finishes up this round of chemo.  In the meantime, we are doing all we can just to keep her little bum happy.  Yesterday, I noticed hair falling out.  It's all over her crib and my clothes.  Tonight when I gave her a bath and washed her head, hair kept coming out in my hands.  Her pretty eyelashes are starting to fall out, too.

We are counting our blessings and continue to be hopeful about Kate's outcome.  Kate is a wonderful little baby and reminds us daily what's most important in this life.  Chris and I love our two daughters!  We are grateful for the gospel and the peace it brings.  Our prayers are being answered and we have seen many miracles over the past few weeks.

Leukemia

On August 1, I took Kate to the doctor (for the third time) thinking a virus had turned into an infection.  Kate had been sick for over a week with a fever. She was very pale and lethargic and seemed to be experiencing a lot of pain and discomfort.  She would only sleep about 20 minutes at a time.  During this visit, her hematocrit levels were checked and came back very low.  She was admitted to Utah Valley Regional Medical Center.  Further blood tests showed low red and white blood cells and platelets.  She had some ugly abnormalities in her WBC.  She was then admitted to Primary Children's hospital where our fears were confirmed.  Our 7-month-old was diagnosed with leukemia.

Kate was immediately given several blood and platelet transfusions, which seemed to really bring life back into her little body.  Initial tests showed Kate had Acute Myeloid Leukemia but pathologists were having a difficult time finding all the markers in her blood to keep her in this category.  The doctors are now categorizing Kate's leukemia as "Ambiguous."  This just makes chemotherpy a little more unsure, since there is no set treatment for this category.

On August 3, she had surgery...a central line put in her chest, a spinal tap (chemo) and a bone marrow draw.  Two days later, we discovered the central line had a leak and Kate had to go back to surgery for a replacement.  Kate will be hospitalized for about five weeks during her first round of chemotherapy.  Afterwards, she will be allowed to go home for about a week to rest and recover before being admitted to the hospital for her second round of chemo.  She will repeat this process four times.  After this period of treatment, she will go home, but continue medication for another year and a half.  She will keep her central line in for the entire two years.  

August 5 was the first day of chemo.  She was started on steroids for the first week.  During this time, Kate was in so much pain any movement made her moan and cry out.  The hospital finally put her on a PCA...patient controlled analgesia which gives her a continuous dose of morphine and also allows us to administer extra doses if needed.  This made a huge difference in her level of comfort and Kate, for the most part, has been acting like her happy, playful self.  Two days ago, the hospital added four new drugs to the cocktail (Vincristine, Doxorubicin, Ara-c and Dexamethasone) and we are noticing more side affects...fatigue, serious diaper rash, and throwing up today.  We are continually doing all we can to keep Kate as comfortable as possible.  

Kate has endured these past two weeks with incredible patience.  She gives her big smile to all the nurses and doctors.  She still loves to kick and blow bubbles and talks up a storm.  We are continually amazed at our little baby's courage.  This experience has given great perspective to life and we are learning many lessons from her.  We are also incredibly grateful for our family and friends who have been an unconditional support to us.