Cycle 1 of 5...ENOUGH

Sleep! This little guy has not been very fond of his bed or any form of a bed. He does enjoy a nice comfy spot on someone. Yet each day he surprises me, like last night sleeping about 60% of the night in the crib. Happy mama!

Michelin tire commercials watch out

Last night, as we do regularly his weight is checked. He gained an entire 1kg. The reality is that he is third spacing

  *occurs when too much fluid moves from the intravascular space (blood vessels) into the interstitial or "third" space-the nonfunctional area between cells. This can cause potentially serious problems such as edema, reduced cardiac output, and hypotension. 

So decision to stop fluids temporarily. Mac is eating just fine, with an episode of what I think is reflux, where he spits up. The concern is that with the leukemia process and even after getting chemotherapy the possibility of tumor lysis syndrome can occur. https://en.wikipedia.org/wiki/Tumor_lysis_syndrome

This morning labs were drawn, as he received a blood transfusion. Of course it took some time but just about all the cell lines affected by AML are low, including his platelets. 

Trend as follows: 104➡️107 ➡️72 ➡️40 ➡️13. So another transfusion, but specifically platelets, which actually looks like freshly pressed apple cider. 

Again we speak about immunizations, which I am still not buying as his system will be wiped out. However there is a slight push for pneumonia and flu (of which currently Louisiana is #1 in cases).

Our plan is to get platelets going and get the LP (lumbar puncture) competed. 

https://en.wikipedia.org/wiki/Lumbar_puncture

My poor little guy was squeezed like an accordion (shout out to my uncle/parrain Jake). Samples were taken, and first dose of intrathecal chemo given. 

A team from radiation oncology came in to speak with Dr. V about plan for the mass in his groin. He will have to receive radiation there, for systemic chemotherapy will not be enough

Our first diaper change status post chemo: gloves, sterile water and a banana colored disposable bin. Let’s just say it looks like an assembly line at a chicken factory. 

Weary agreement for pneumonia and flu vaccines were completed today. I asked that they be given about half an hour apart. I know you may be thinking but you gave vaccinations to your other kids, and you advocated for them with your pediatric patients. Yes, I would agree with all of that. Yet I have been placed in a different situations,  my under 6 month un-vaccinated recently diagnosed with leukemia son’s immune system is about to be shot, should I try to help his immune system as much as possible? 

The following two will be infused over two hours, separately. 

Clofarabine

Cytarabine : causes irritation to eyes so steroid drops will be used every 6 hours. 

The first medication  has been running and he is pretty happy. Now I say this with reservation. I mean kids are so resilient but he cannot speak so it worries me when he can’t tell me that he is feeling something because of the medication. 

Now on to the second...well It’s happen. My emotions are filled. Mostly with anger and frustration as for the entire 2 hours my child has screamed to the top of his lungs, with small moments of quiet when he literally cried himself to sleep. If I could transfer his pain and agony I would.

So as his advocate and a very emotional mama, I spoke up and they are going to get him some better medication for pain. I say this because again I’m the one administering his oral medication and the poor kid is choking and spitting up most of the medication. 

Icing on the cake is daddy is here singing Spanish ballads which he knows his sweet little boy loves.

Cutest carrot I’ve ever seen. 

At this point he has passed out, mostly due to exhaustion and some added Benadryl. In this moment it makes me think of: "I will both lie down and sleep in peace, for You alone, Lord, make me live in safety."-‭‭Psalms‬ ‭4:8‬‬
Does Mac even realize this? This talk of peace, in its truest form, is only found in Jesus. I mean despite me feeling like I was spinning out of control due to the pain that my child had to have been experiencing to now just lay in PEACE. 

  Father God thank you for today and the blessings that you have outpoured onto our family from loved ones. Though we may not have sought out any aid outside of our hope in you, your provisions are always right on time (being moved to a bigger room, or fuzzy slippers that were being inquired about). May Emerson sleep without pain, as tomorrow is a continuation of the journey that you have called him to. Protect his immune system. Amen