Bring it on: day#2

Hi everyone I wanted to first share a great video of my bi sister and brother. They are the best, they are keeping my daddy and Ayeya busy at the house. Oh yes, they make sure to feed Stella our dog!

Check it out, love Mac!

Praise God for sleep. This little guy rocked out the the beginning of cycle 2: Cytarabine (he had this during 1st cycle, difference is higher dose over a 3 hour infusion).

They gave  Mac second dose this morning, but today is going to be a doozy! So I’m not sure if you recall that the protocol Dr. V initiated with did not include Daunorubicin, which can cause cardiomyopathy along with other cancer issues. Well this go round with the thought that Emerson could have a bi-phenotypic leukemia we are doing a different cocktail. This will include:

✅Daunorubicin-infused over 6 hours

  *Zinecard-cardio protective medication will be given 15 minutes prior to starting 

✅Etoposide-also infused over 6 hours

Concern obviously for the laundry list of side effects with all the new medications, so I’m planning for a long day. There are two other major topics that we will be working on hopefully by Monday:

✅wound care: remember that port that had to be removed, well there is a fairly significant opening to Mac’s right chest wall. With all the chemo destroying his good cells along with bad, I am worried that the would won’t heal. So there is a care team that just deals with wound healing. 

✅nutrition: now up until now, even with his weight loss, Emerson has eaten very well. With this new combo, there are uncertainty on how his body will react. Hence why we got the g-tube placed (tube directly into stomach). My hope is to continued to breastfeed, and possibly get him breast milk fortified (my milk with some additional calories) through the g-tube, via a pump overnight. 

Extra! Extra! Read all about it!

So our oncologist is part of a team, and this weekend Dr. F is working. He lets me know this morning that the bone marrow biopsy from last week appears to be free of any blast cells ( signs of leukemia). So now what we are dealing with is praying this cycle will penetrate the the CNS (central nervous system). So though I’m elated that Mac’s bone marrow is great, I’m hopeful these medications will go and cross the blood-brain barrier and kick some cancer butt!

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We are at a conundrum...

So many of you know that I like control and I’m a bit of a worrier. Well elvin has his schools winter formal this evening. Now truth be told I have not been out with the hubby since prior to Mac’s birth. He has been understanding with all that has been happening. I’m concerned that the new medications will put this little guy in a funk, and of course I’m the only one who can calm and pacify him. There is constantly loved ones asking to help, by coming to stay with Mac. Call me delusional, as I admit to my lack of sleep, but I just don’t want to leave him. Though you all know that Emerson does not take a pacifier, nor does he like bottles (despite attempt of several kinds). Thank the Lord for the g-tube, because he can be fed through that. 

Just nervous...what shall I do.

✅go to gathering: potentially worrying about Mac

✅not go to gathering: worrying about sharing a short moment with the hubby

I’m sure many of you who have kids would be in the same dilemma.

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By this time it is  6pm, and we are approaching the last 1.5 hours of the second chemo drug for the day. It looks like TANG, for anyone who has never tried it, this drink is bright orange. Now remember prior to it’s start the cardio protective medication was given. At this time Mac has had a temperature and vomited all over me, so what comes next was bath time! Well more like warm wipe me down, with a massage that included lavender oil. And he has managed to fall asleep. 

I’m praying that with the upcoming third chemo med he will do well. 

Again I go back to my conundrum of stepping away for a small time. I know that it’s just ‘mom guilt’, but I love this little guy, and I don’t desire to be away for a second. So I take time to go to God’s word. And the following words just gave me a sense of peace. 

“There are three things that amaze me—no, four things that I don't understand: how an eagle glides through the sky, how a snake slithers on a rock, how a ship navigates the ocean, how a man loves a woman." 

Proverbs 30:18-19

"Can a woman forget her nursing child, that she should have no compassion on the son of her womb? Even these may forget, yet I will not forget you."

Isaiah‬ ‭49:15‬‬

Father God I thank you for help. Though I don’t often desire to accept it, I don’t love Emerson, Emelia or Emmanuel less when I’m away from them. Lord thank you for granting strength for Mac today, as he is not yet receiving all chemo for the day. May your Holy Spirit be present in this place. Thank you for the reminder that spouses and children are blessings and that we should not take either for granted. Amen