This may be the first day we have an hour to catch our breath. It is a regular party in this room with all the visits from medical staff. The few precious quiet 30 minute breaks we get are spent checking in with all of you warriors, praying and (once) showering! Napping isn’t an option because hey- I’m a mom. The rule about putting your head down and kids immediately crying is still true here, except that a silent call button that brings staff running to my room is hidden in the pillow. I’m sure of it. Sadly, the disruptions are necessary and very well done.
We also met a speech therapist and occupational therapy team today. We had a blast, said “Bubbles!” for the first time and got to play outside of the crib.
We also took a fun ride around the “block” in one of the hall wagons.
Time for some Q & A:
1) What is happening today?
Today we began our first chemotherapy treatment. It is an IV bag that hangs and drips continuously for 96 hours, along with other fluids to flush his system and protect his kidneys. How long does it take?
He is also getting good nutrition boosters along with his usual baby foods. There are 5 different medicines that will go into him at various times, but we are starting slowly. One is a red fluid, and “the red devil” causes sensitivity to skin. It causes sensitivity to skin, so we are changing diapers and slathering on protective cream while wearing gloves as if he were a newborn. His levels are checked constantly and the nurses are giving him lots of extra attention.
2) What is the treatment schedule like?
For the next 96 hours chemotherapy will be dripped into his system. This kills off all the bad and yes, good stuff too. Then his system will stabilize and the white counts will slowly rise as the good stuff remains. This happens over about a 30 day cycle. The first week is the hardest on him. If he is feeling well and his levels are good, he may be able to come home for a week. It all depends on how strong his immune system is.
3) What is the “central line” and what does it do?
A central line is type of catheter that puts a tiny tube from a central vein between the heart and collar bone. It has a small white tube that comes directly out of his chest and connects to an IV attachment. This allows everything to go directly into the blood stream.
We’re a bit wired…
4) Can I donate bone marrow to help?
I LOVE the offers to help! You absolutely can donate blood and especially plasma, but it is best for it to go into central populations. PLEASE do that if you want to! It helps! Sadly, this is not a problem a bone marrow transplant can fix.
The “sick marrow” is being made– it is in his inmost being. What is bad and imperfect in him must be utterly destroyed and he must be infused with new blood and restoratives. Without the shedding and cleansing of his blood there can be no remission. Yes, I did just medically preach the gospel to you. Our sin and imperfection is in our inmost being and can only be healed with the perfect blood of Christ and continual cleansing that saves and sanctifies us. I tell you, Christ is in every step of this process.
5) Does The Conqueror understand that he is sick? Does he feel unwell?
Yes. Obviously, he can’t comprehend all the details of AML (sometimes I really can’t understand it all!) but as always, he understands more than we give him credit for. Now that he can hear and is speaking in small words, I realize he can interact and answer questions quickly. He never ceases to amaze me.
He is used to hospitals but he seems ready to leave; he has rarely stayed in this setting for so long. He is wanting to get out of the crib and to play. To put it plainly, he is in pain. The spinal tap and putting a tube through the chest hurts for a few days. We are managing his pain as best as possible with medication and extra hugs. He is acting a lot like a kid who is teething or has a fever– just lethargic and fussy. The next few days will be challenging for him physically but his spirit and spunk are at full level! I am so proud of my Conqueror. He is still dancing but his smile has faded a bit.
6) Are we sleeping?
Yes, like a mom of a newborn. When we get to sleep, we crash hard. There are a lot of interruptions and NO free time yet. It has been hard to connect with those outside the hospital but we are trying! We love you! We are comfortable in our surroundings although we should have a new room this month. We get 2-4 hours of sleep a night without interruption and another hour from 10:00-11:00.
What other questions do you have?