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)
You’ll be able to have the M>D> after your name when all this is over Thanks for keeping us informed.
We are praying continuously. Today is my prayer group. Hopefully Sally will feel our prayers directly. May God bless you all. +
Wow. Seeing it all put out there like that is more than a little mind boggling, even after reading all the posts and everything that has happened so far.
God Bless the Kabel family.
Mamabear and papabear…you guys rock and it’s easy to see where Sally gets it from. Positive thoughts and prayers going out every day to you guys!
Hello Kabels… I’ve been following Your updates since you guys started this blog. You are all in my thoughts all the time, especially little Sally. I thought I might add a comment now as i’m familiar with the feeding issues, tube placements and everything that goes along with it… I know that making the decision to get the tube is a tough one for any family, and I hope it will ease the stress you all must be feeling with trying to help Sally get all the calories that she needs. I don’t know if you’ve seen anyone already, but during your time at MSK it may be beneficial to ask to touch base with a speech pathologist. Speech pathologists work with kiddos when issues arise with feeding. I’m not saying they will be able to get her to eat more, but they may be able to give you some tips to ease her aversion to anything going near her mouth and keep her skills up for when she does start to eat again. Because they specialize in feeding I know they can be a helpful resource to have even if it’s just for questions and problem solving. Hope this helps 🙂
So much medicine for such a small body 🙁 God bless her to keep her healthy and strong and to remain in remission. My thoughts and prayers go out to ALL of you. xoxoxo…..
God Bless you all… <3 <3
Scarlett will be excited to see Sally next week. You should be enjoying the boys first week of school instead. I am sorry. Wow, her treatment is overwhelming. Thinking of you guys always.
All I can say is – God bless all of you!
I am so very proud of you two for the way you, Matt and Nicole, are taking care of our little Sunshine. You have learned much and are able to use that knowledge to really help out Sally. My prayers are always with your family.grampa kabel