Intrathecal: into the spine

  

  So today I’m preparing myself for a long day. Despite my own personal inability to sleep last night, this little guy slept fairly well and arose with a smile. It appears that Mac is a high commodity on

the floor with the nurses eager to be able to have him on their list. I mean I’m a bit bias obviously, but he just loves the attention, well most of the time. You wouldn’t be able to tell as he tends to have a scowl appearance on his face. I often say that’s his happy face as he is not crying or whining. I will admit that his smile does light up a room. Which makes me think about Manny and Mia when I ask them to smile for me. Often times it is this forced appearance as if they are trying to pass gas, while other moments are flawless. It’s in those moments I can never get my camera option opened quick enough. Ironically Emerson appears more aware when you put the camera to him, and even more when it’s in self portrait mode as he can see himself. 

  Mac is once again getting platelets, which if you ask my husband looks llike a bag of apple cider.  This will be followed by a numbing patch to his lower spine, to prepare him for his second dose of intrathecal chemo. Dr. V chose to only do one round last week, based on protocol and dosages. However he will be receiving them twice this week, today and Thursday. 

  So I have been asked repetitively ‘How are you doing?’, and my response often is ‘I am doing okay’. 

I mean there is part of me that feels like I should be falling apart, though I’m not sure that would be helpful to anyone, especially Mac. But I also know that it’s okay for me to have those moments of weakness, knowing that I don’t have to hold it all together. 

“God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.”

‭‭Psalms‬ ‭46:1-3‬ ‭ESV‬‬

  Truth is that despite the physical intensity that this diagnosis and treatment will have on my child, there will be emotional and spiritual needs that need to be met. So I’ve been doing my best to just go for walks about the hospital and outside. It has truly been a nice change of pace, often being in the quiet. I’m often working on the blog during this time. The idea to walk by faith, not knowing what is to come, is a true test of your faith. As human beings we like tangible things, understanding what we can see and touch. You see in my reality whah I rely on often I cannot see, but I just trust God to do his part and finishing the work. 

  Mac did amazing today with the intrathecal chemo, despite him moving a bit more than the doctor would have liked. This may mean sedation for the next round, I’m hoping to use the cuteness of Mac to my advantage in that we can avoid sedation. As he has had a long day he bids you goodnight. 

Father God thank you for the strength that you poor into me, when I have none. Thank you for the loved ones you have surrounded my family with. Lord I pray for those who are reading and do not know you or ma my be questioning about you. May your Holy Spirit move through this blog and fill their lives and make the truth known. Watch over my husband as he is with the children tonight. Protect their hearts as I am away, and may they not remember the hard times. Amen

(Thanks for sharing Mrs. K)

https://youtu.be/JNZte3IdpZo