Round Two

Kate was finally able to come home after finishing her "Induction" phase of chemotherapy.  Thirty-nine days in the hospital!  It was a strange experience to walk out with her in my arms.  We spent almost two weeks at home waiting for her blood counts to recover, and enjoyed every moment.  

Kate was admitted back to the hospital on Tuesday, September 23.  She had a bone marrow aspirate and a lumbar puncture.  The doctors took bone marrow to test Kate's Minimal Residual Disease.  This is a test to show how many leukemic cells are left after Kate's first treatment.  It gives us a good idea on how she is responding to the treatment and is a good prediction on the possibility of her needing a bone marrow transplant in the future.  The test came back negative.  This is a incredible miracle.  It is very rare to see a patient with no MRD after only one treatment.  This also means that Kate will not be getting a bone marrow transplant.  (Hurray!)  Unfortunately, the cancer cells like to hide out and there is no possible way to test with 100% certainty that all her leukemia cells are gone.  In past studies, if a patient doesn't continue with the full treatment (even with good MRD numbers) the cancer almost always returns.  Kate will continue with the full two years of chemotherpy, but we are moving forward with confidence to our goal of full remission.

Kate is currently in the hospital receiving her second round of chemotherapy.  One of the chemotherapy drugs administered during the "Induction Intesification" phase is a high dose of Methotrexate.  This runs through IV for 24 hours, and is followed up with a rescue drug to clear the chemo from her body as fast as possible.  If it doesn't clear quickly, she will get burns and blisters on her hands and feet.  Another infamous side effect of Methotrexate is Mucositis, inflammation and sores in the mouth and digestive tract.  So far, she's been able to clear the Methotrexate and we haven't seen any signs of Mucositis.  

Kate continues to be a little, happy soldier.  She hasn't been in too much pain during the past two weeks, and we are hoping she will get through round two without too many major side effects.  She's starting to roll around and wants to be on the move more and more each day, which is fun to see but a challenge keeping her entertained in a little hospital room all day.  The hospital is currently on Winter Alert because of respiratory virus, and no visitors under 14 years old are allowed.  Maren is anxious to see Kate, and Kate adores her sister.  We are hopeful to be together soon.        

Kindergarten

First day of Kindergarten

A few days later...

I can't believe Maren is in Kindergarten!  Time flies with these little girls.  Maren was a little stressed the first day.  Now, when I drop her off in the morning, she walks into school all by her self with all the other big kids.  The hospital came around this week with Pillow Pets for all the patients and their siblings.  I thought she would love it, but Maren was ecstatic!  She has not parted with that thing since.  She even took him to Show and Tell this week.

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.