Molly's first hospital stay, Pt 2

Wed, Nov 21st, at about 6am one of the many wonderful nurses that took care of Molly during our stay at PCMC told us that Molly was scheduled to go into the OR at 7:30am. We were pretty excited about that because it meant Molly didn't have to go all day without food. The nurse had me take Molly's earrings out and we wheeled her bed through the halls and down to the 2nd floor where they put us and her bed into a room to wait for the anesthesiologist to come get her.
 

In the pre-operating room. She's smiling under that mask.

We didn't tell her what was happening because I know how awful anticipation can be, so when the anesthesiologist came to get her, we told her he was going to take her into another room and told her to have fun. We made sure not to make a big deal of it, and we also made sure the anesthesiologist knew that Molly loves her frog blankie, and to say "frog blankie" and "pink blankie" not like it's a description of the blanket, but like it's the blanket's name.

We were directed to the parent waiting room, where we checked in and told the front desk that we'd be going up to our room to eat breakfast instead of waiting downstairs for the 2 hours Molly would be in surgery. For the next 2 hours we pretty much relaxed. We ate breakfast in Molly's room, then I grabbed my cell phone charger and we went down to the waiting room. The surgeon who was placing the port came in shortly after we got there and told us he was finished... which surprised us, because it had only been about 30 minutes. But then we found out they had not done the lumbar puncture or bone marrow biopsy yet. So we waited in that room for the remaining time and right around the 2 hour mark the front desk called for "one parent for Molly" and James went to sit with Molly as she woke up from the anesthesia. I waited for what seemed like forever before the front desk called "Molly's mom to the front desk."

The halls on the 2nd floor have pictures of things like kites or hot air balloons on the floor, and I was told to walk down the hall to the hot air balloon and wait there where they'll bring Molly out. In a couple of minutes the doors opened there and Daddy and Molly came out. She didn't look miserable or anything, so I said hi, and I love you, and how are you, and we walked back up to her room.

When we got back to the room, we were told that her spinal fluid test was negative for cancer cells, so that tells us that the cancer hasn't traveled to her brain. They'll be testing her spinal fluid periodically throughout the treatment to make sure it remains negative. We were given an outline for the treatment Molly will be getting.

Quick lesson: Molly's chemo treatment schedule

• First phase: Remission Induction Chemotherapy. The goal of induction therapy is to bring the disease into remission. Remission is when the patient's blood counts return to normal and bone marrow samples show no sign of disease. 4 weeks long.
  
  • 2x/day chemo steroids by mouth (dexamethasone or DECADRON) (Side effects: increased appetite, insomnia, irritability, water retention in face and other possible areas of body, weakness, increased stomach acid)
  • 2x/day antacid by mouth (ranitidine or ZANTAC) (Side effects: no common side effects)
  • 2x/day on Mon and Tue preventative antibiotic for pneumonia by mouth (trimethoprim and sulfamethoxazole or SEPTRA) (Side effects: no common side effects)
  • 1x/week chemo drug through the port implant (vincristine or ONCOVIN) (Side effects: hair loss)
  • 1x/month chemo drug through the port implant (pegaspargase or PEG L-asparaginase) (Side effects: nausea, weakness, poor appetite, stomach pain)

•  Second phase: Consolidation Chemotherapy. The goal of consolidation therapy is to reduce the number of disease cells left in the body. The drugs and doses used during consolidation therapy depend on the patient's risk factors. 4 to 8 months long.
  
  • We don't have the treatment schedule for this yet. 

•  Third phase: Maintenance Chemotherapy. If a patient stays in remission after induction and consolidation therapy, maintenance therapy begins. The goal is to destroy any disease cells that remain so that the leukemia is completely gone. 2 to 3 years long.
  
  • We don't have the treatment schedule for this yet.

• Ongoing treatment: Central Nervous System (CNS) Prophylaxis Chemotherapy. During all three phases of chemotherapy treatment, many patients receive extra chemotherapy to destroy leukemia cells that may have spread to the central nervous system (the brain and spinal cord). This chemotherapy is injected right into the spinal fluid using a lumbar puncture (spinal tap) or an Omaya reservoir (a device placed under the scalp). It is called intrathecal chemotherapy.
  
  • Day 1 of Induction - lumbar puncture and chemotherapy administration
  • Day 8 of Induction - lumbar puncture and chemotherapy administration
  • Day 29 of Induction - lumbar puncture and chemotherapy administration
  • We don't have the treatment schedule for any after this yet. 

 
The bone marrow biopsy was to test further what classification of ALL Molly has; and the results came back as Early pre-B cell ALL.

Quick lesson: Classification of childhood leukemia
Doctors have found that lab tests provide more detailed information about the subtype of ALL. These tests help divide ALL into groups based on the immunophenotype of the leukemia, which takes into account:

• The type of a kind of white blood cell (lymphocyte) (B-cell or T-cell) the leukemia cells come from

• How mature these leukemia cells are 

There are 4 main subtypes of ALL, as shown below

• Early pre-B cell; 60%-65% frequency

• Pre-B cell; 20%-25% frequency

• Mature B cell; 2%-3% frequency

• T cell; 15%-18% frequency

B-cell ALL is the most common. T-cell ALL affects boys more often than girls and it affects older children more than does B-cell.

Quick lesson: (Source: http://www.cancer.org/cancer/leukemiainchildren/detailedguide/childhood-leukemia-prognostic-factors)

Prognostic factors for children with ALL
Different systems are used to classify childhood ALL risk. In one of the more common systems, children with ALL are divided into standard-risk, high-risk, or very high-risk groups, with more intensive treatment given for higher risk patients. Generally, children at low risk have a better outlook than those at very high risk.

While all of the following are prognostic factors, only certain ones are used to determine which risk group a child falls into. (The first 2 factors – age at diagnosis and initial white blood cell count – are generally considered the most important.) It's important to know that many children with one or more poor prognostic factors can still be cured.

• Age at diagnosis: Children with B-cell ALL between the ages of 1 and 9 tend to have better cure rates. Children younger than 1 year and children 10 years or older are considered high-risk patients. The outlook in T-cell ALL isn't affected much by age.

• White blood cell (WBC) count: Children with ALL who have especially high WBC counts (greater than 50,000 cells per cubic millileter) when they are diagnosed are classified as high risk and need more intensive treatment.

• Subtype of ALL: Children with pre-B or early pre-B-cell ALL generally do better than those with mature B-cell (Burkitt) leukemia. The outlook for T-cell ALL seems to be about the same as that for B-cell ALL as long as treatment is intense enough.

• Gender: Girls with ALL may have a slightly higher chance of being cured than do boys. As treatments have improved in recent years, this difference has shrunk.

• Race/ethnicity: African-American and Hispanic children with ALL tend to have a lower cure rate than children of other races.

• Spread to certain organs: Spread of the leukemia into the spinal fluid, or the testicles in boys, increases the chance of a poor outcome. Enlargement of the spleen and liver is usually linked to a high WBC count, but some doctors view this as a separate sign that the outlook is not as favorable.

• Number of chromosomes: Patients are more likely to be cured if their leukemia cells have more than 50 chromosomes (called hyperdiploidy), especially if there is an extra chromosome 4, 10, or 17. Hyperdiploidy can also be expressed as a "DNA index" of more than 1.16. Children whose leukemia cells have fewer chromosomes than the normal 46 (hypodiploidy) have a less favorable outlook.

• Chromosome translocations: Translocations result from the swapping of genetic material (DNA) between chromosomes. Children whose leukemia cells have a translocation between chromosomes 12 and 21 are more likely to be cured. Those with a translocation between chromosomes 9 and 22 (the Philadelphia chromosome), 1 and 19, or 4 and 11 tend to have a less favorable prognosis. Some of these "poor" prognostic factors have become less important in recent years as treatment has improved.

• Response to treatment: Children whose leukemia responds completely (major reduction of cancer cells in the bone marrow) within 1 to 2 weeks of chemotherapy have a better outlook than those whose leukemia does not. Children whose cancer does not respond may be given more intensive chemotherapy.

Molly is a low risk patient. She was 1 week away from her 2nd birthday at diagnoses, her white blood cell count was 6,200 per cubic milliliter, she has early pre-b cell ALL, she's a female, and the cancer hasn't spread to her spinal fluid.

Just out of surgery! It went very well.

Molly and Big Sis doing some coloring. It's much easier now that the hand IV is out!

This is a video of Molly hooking her cords up again after a trip to the bathroom. She insisted she do the task herself... if we even presumed to do it for her, she would get very upset!

All the family visited again, and since Nana was in town for Thanksgiving the next day, she came to visit and brought gifts and get-well cards from family up in Idaho. Daddy and I decided to take Big Sis home to our house for the rest of the week, so I went home Wednesday night to clean up the house, shower and get some rest while Daddy was at the hospital with Molly, and the next day Big Sis and I went back to the hospital.

To be continued, of course...

P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.