Hi All, Matt worked late last night and isn’t feeling well. I’m going to do my best to do the update for yesterday and today. First off some positives. Sally’s counts have recovered.  The team would like to start the next step tomorrow instead of waiting the the full 28 days of this cycle which would have been Monday (I expected this might happen). Sweet little sunshine was playful and energetic the past two days. Sally got to meet Scarlett’s brother Ryan and Cami’s sister Olivia. Seeing friends at MSK is the closest thing we have to meeting up at the playground. Brings a smile to both of our faces. Today the kids and I were home for the first time together 23 or 24 days. It was pleasantly normal and uneventful.

Many have asked about Sally’s treatment praying she stays in remission. I’m going to do my best to explain it to the best of my understanding. In a typical 2 year chemo alone protocal the first cycle is Induction (28 days), Consolidation 1 (28days), Consolidation 2 (60days), Maintenance 1 x5cycles (60days each), Maintenance 2 x5 cycles (84 days each, ) = 2years of treatment. We learned 2 weeks ago that due to Sally’s age and risk instead of Maintenance 2 Sally would receive 10 60 day cycles of Maintenance 1. Induction and consolidation are complete. Next should be  Consolidation 2 and Maintenance 1. They are very similar, except in the first 4 weeks of Consolidation 2  she will have a spinal tap with intrathecal chemo (in the spine) once a week. In Maintenance 1 she will only have a tap and marrow in the beginning. I’ll explain consolidation 2,

day 1 marrow aspiration, spinal tap and intrathecal methotrexate

days 1-4 oral chemo at home (thioguanine)

day 4  IV chemo cyclophosphamide and pegaspargase

day 7 spinal tap and intrathecal methotrexate

day 11 IV vincristine, prednisone (steroid)

days 11-18 high dose prednisone

day 14  spinal tap and intrathecal methotrexate

day 18 IV vincristine

day  21  spinal tap and intrathecal methotrexate

day 25 IV vincristine and methotrexate

day 34 IV pegaspargase

day 39 -40 IV 48 hr Daunorubicin

day 41  IV Cytarabine and oral Thioguanine

day 42 till next cycle depends on how long it takes her blood counts to recover. Also we will have outpatient visits in between to check her counts and get transfusions.

We were set and prep to start the above cycle when our team decided to do a pre treatment add on. Instead on Monday the 9th she will have a very high dose Methotrexate (they want this drug to stay in her system for 24hrs) followed by 3-4 days of flushing her system to get rid of it. So on Mon-Thursday, possibly Friday, Sally and I will be at MSK from 9-5 and then will repeat this again the following week. They need to do labs and monitor her during the flushing process. We will also be sent home with IV fluids. The purpose of this add on is to prevent the leukemia from entering the central nervous system. Our plan to return for the initial tap and spinal tomorrow remains as well as a feeding tube. The feeding tube will not be a permanent one so she can pull it out. For two weeks we have struggled to try and get her to eat and drink on her own. She is traumatized and resistant to bottles, cups and most anything by her mouth. Though she did start eating some solids the past two days it is not enough to sustain her. She has been feeling great so Matt and I know when the treatment starts and she doesn’t feel good the lack of eating will only get worse. Sally’s Dr.’s will put a permanent tube in when the appointment to do so opens up in two or three weeks. Some of her oral medicines can also be administered in the tube which will be helpful with getting her to make nice with eating and drinking again.

That was the most brain power I’ve used in awhile. I’m feeling tuckered and am ready to snuggle my sweet baby girl. We have to be at MSK at 7 tomorrow so have to be up early. Good night all.

Please keep Sally in your prayers

Mama Bear (Nicole)