Delayed Intensification - A Mother's Review

Day 63 of 56 - Delayed Intensification

Delayed Intensification is 56 days long and it is the fourth phase of frontline treatment. Frontline is the initial portion of the 3.5 year treatment for acute lymphoblastic leukemia.

Chemo Holds:
1 (added an extra week on to the treatment)

Days Spent Impatient:
Days 4-5
Days 48-52

Medical Details:
• 2 intrathecal chemo doses via lumbar puncture
• 8 doses of IV chemo, Vincristine, Pegaspargase, Cyclophosphamide, Doxorubicin.
• 8 at home doses of chemo, Cytarabine (ARA-C)
• 14 Days of oral chemo, Thioguanine.
• 2 weeks spent neutropenic (ANC 0 +/-)
• 8 clinic visits, 13 lab blood draws

Medication Given:
• methotrexate (MTX), IT
• doxorubicin (DOXO), IV
• vincristine (VCR), IV
• pegaspargase (PED-ASP), IV
• cyclophosphamide (CPM), IV
• cytarabine (ARA-C), IV
• thioguamine (TG), PO
• dexamethasone (DEX), PO

Symptoms we had:

• Fever- One of my biggest fears was how low the counts were going to get and how susceptible to germs and illness he was. The first half of DI was not as intense as the second half of DI where it is known to tank counts. Having a low ANC means that he is at a risk of infection. Infections mean fevers, and fevers mean a trip to the hospital. During weeks 6-8, Lukas received over 25 doses of chemo either by mouth, IV, or LP. Week 7 Lukas developed a fever of 103 and we were in patient for 5 days.
• Hair Loss- I think it finally happened -- maybe -- possibly?!? Lukas basically still has the same 'do that he was born with; nothing more, maybe less. His hair has gotten blonder so it is very hard to tell if he is missing anything or if any has "really" fallen out. I am going to say that even if he didn't loose all of his hair, it has halted in the growth aspect. 
• Allergic Reaction to PEG- on Day 4 of DI we had our second (and final!) dose of Pegaspargase (PEG) chemo. It is known to cause reaction in 2/3 of patients. Lukas had a reaction immediately, not even 10 seconds after PEG was administered. He started to cough and then within seconds, he was in full anaphylaxis shock. Seconds later, he was given his epi-pen, a high dose of Benadryl and a solu-medrol bolus, they were able to stop the reaction. Minutes later, I got to hear my baby's voice say, "I fine, I fine Mommy." Because of the reaction, we had to be admitted into the hospital for monitoring.
  

​You can see my post about the reaction here: 

Symptoms we missed:

• Fatigue- Those steroids are supposed to take a toll on your body. They really didn't effect Lukas that much during his 2, 5-day steroid pulses. He was still a little jumping bean, running and playing all over the place. Nothing can hold him down. Maybe he did scream a little more than usual.
• Nausea- Lukas didn't vomit at all from any of the chemo meds he was given. We kept being told that all the medicine that he was getting was going to make him so sick. I was petrified of DI. We did around the clock doses of nausea medicine to help combat the feelings. However, he did have a lack of appetite some days and sometimes thought to be nausea. Our team told us that young kids like Lukas do not even know that "nauseas" is, but the sensation they are having keeps them from eating is what adults would call nausea.

Hardest part:
The waiting and the anxiety for Lukas to go home accessed so he could get his four doses of ARA-C at home from a home health care nurse that came two weeks in a row. Also, knowing that his counts are going to drop and that we could be put on a hold at some point or be hospitalized (and we were--twice). After our first hospital stay, where he was access and running around like the Mayor of the floor, it eased my nerves of spending FOUR days accessed at home. Being on a chemo hold is a double-edge sword. As much as you welcome a nice break for the body to recover, you are also fearful that he is not getting his treatment and hoping that it will not effect the outcome.

Biggest Surprise:
I spend most of the first three phases incredibly worried and nervous for DI. I read so many posts on FB about how hard, scary, and terrible it was going to be, that I set myself up for it to be just downright miserable. Everyone had a story about their reaction to PEG. I was extremely worried that was going to happen to me (and it did). Most of my questions to our nurses and oncologist revolved around DI--you could tell I was dreading it. It was hard and exhausting, mainly from an anxiety-ridden standpoint as detailed above. It was long and tiresome and I am just glad its over. But if I have to search out a surprise it would be how well Lukas did with the Cytarabine (ARA-C) chemo that was administered via infusion at home. He was a champ when it came to taking all of his medicine each night and even started to give it to himself. He was so proud of himself that he was able to take it and push the syringe of medicine into his little mouth. He would turn to me with a huge grin on his face saying, "I did it!"

We are coming to an end of ANOTHER milestone, we made it through the fourth phase of treatment. We are on day 63 of 56, we got a TWO week break of no chemo, but had to have counts checked each week. We will be going back to clinic this Friday to check counts again to see if Lukas is able to start our next phase - Interim Maintenance #2 with a spinal tap. 

Lukas' numbers were a bit higher this week than the previous weeks hospital stay. 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:
• Platelets: 88 (normal 150-400)
• Hemoglobin: 9.3 (12-16)
• ANC: 390 (1200-8000)

For Lukas to have a blood transfusion, his hemoglobin needs to be under 7.0 (which he was while impatient at the hospital last week and got 2 transfusions). To receive platelets, he needs to be at/under 10 (his platelets were at 2 during his hospital stay and he got 2 transfusions ).

If his number are good this week, we are on to the Interim Maintenance #2 phase!

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.

Delayed Intensification is over. THANK GOD!