Interim Maintenance II - A MOTHER'S REVIEW

Day 56 of 56 – Interim Maintenance II
Oct 11th- Dec 9th

Interim Maintenance II is 56 days long and it is the fifth phase of frontline treatment. Frontline is the initial portion of the 3.5 year treatment for acute lymphoblastic leukemia.

Chemo Holds:
1 week for a low ANC - so no spinal

Days Spent Impatient:
NONE! Expect one ER visit for a Nursemaids Elbow

Medical Details:
• 2 intrathecal chemo doses via lumbar puncture
• 5 doses of IV chemo, Vincristine and Methotrexate
• The IV Methotrexate is escalated based on blood results, beginning at 2/3 the highest dose reached during IM1, so Lukas began at 250mg, and escalated through too 450mg.
• 5 clinic visits, 5 lab blood draws, and numerous phone calls to clinic

Medication Given:
• methotrexate (IT MTX), IT
• vincristine (VCR), IV
• methotrexate (MTX), IV

Symptoms we had:

• Fever- Always scared and nervous about getting a fever and having to be inpatient. We did get a fever during IM2, but it was easily brought down by a couple doses of Tylenol and we thankfully dodged going to the ER.
• Hair Growth- I think it is finally happening -- maybe – possibly?!? We are starting to get some hair growth. There is some cute little peach-fuzz growing on my little man’s head. It is so soft and there are a few pieces of hair that are getting really long.

Symptoms we missed:
Mouth sores, infection, nausea

Hardest part:
After the roller-coaster ride we were on in DI, I was super worried that we were going to have the some problems with IM2. I get so worked up about each phase and what to expect. The constant worry is the hardest part. We are finishing up IM2 with the start of flu and cold season, so adding that into my worry about his lower counts and catching something make us not leave the house too much.

Biggest Surprise:
With his escalated MTX at each lumbar puncture I was worried that he was going to be nauseous. With each escalation, he felt fine and once he dropped the sedation for his Lumber Punctures, you would never even have thought he was receiving chemo. He did just fine, without any side effects. The last two LPs that he had the doctors decided that they were not going to give him the Versed before the spinal to see if that made a difference on how he felt. He did awesome and the crummy feeling afterwards was so much better. He would run out of clinic down the hall to the trains!

We are coming to an end of ANOTHER milestone, we made it through the fifth phase of treatment. We got a TWO week break of no chemo and no clinic. We will be going back to clinic this Monday to check counts again to see if Lukas is able to start our next phase - Maintenance with a spinal tap. 

Lukas' numbers were a bit lower than normal two weeks ago. They were not in the "normal" range for him, but he was high enough that he didn’t need to have any transfusions of blood or platelets. 

To put some perspective on what all this means here are his numbers with the normal levels in parentheses: As of 11/21
• Platelets: 148 (normal 150-400)
• Hemoglobin: 11.0 (12-16)
• ANC: 1000 (1200-8000)

IF his number are good this week, we are on to Maintenance! This is the final stage of treatment that will last for the next 910 days! He will go to clinic once a month for count checks and every 12 weeks he will receive chemo and a spinal. He will also be taking oral chemo pills for the remainder of his treatment each day!

To start the next phase:
Platelets need to be 75
ANC needs to be 750 

If they are not, we will have to wait another week and try again hoping his numbers will increase in that time being.

Interim Maintenance II is over. THANK GOD!
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(This phase my mom took Lukas a lot to clinic as Jeff and I have been very busy at work and couldn't take many days off - Lukas is one lucky kid to get to go with his Yiayia!