Mac's Adventures

Is that possible? To be nervous and elated as well. Yesterday was a calm day, filled with discontinuing medicine from the port, and watching for fevers. Mac is still a bit congested and has a cough, but otherwise he has no other symptoms. He has managed to feed for time on end, and yet he still is losing weight. I’m grateful that his appetite is still normal, as he does have an aversion to medicines but not to my milk! His counts, blood count that is; has been recuperating. There is concern for continued elevation of monocytees, which Emerson’s type of leukemia has a high proportion of. Per Dr.V that will not keep us from going home. Manny and Mia are excited to have both mom and baby back home. I am excited that they will enjoy a few days of normalcy. The medications that we need to go home with have been written and will be sent up by pharmacy. The room has been packed up. I will have to say that I don’t recall coming in with half of what we left with. Plan is to keep most

Good early morning. As I write Mac is falling back asleep as his labs were drawn.  Emerson had a wonderful thanksgiving. I will admit that he has been a bit fussy, but who could blame him. His poor little bum is very sensitive, even with us changing his diaper frequently.    As you can imagine with anything that you consume, including medication, it’s got to make its way out.  So many people cooked and labored and traveled to come and share in the day with us at the hospital. I mean you could smell the gumbo and various dressing and fixings, as I tried to offer other families come and join. I had not thought that this thanksgiving would be spent in a hospital, but I was going to give thanks and praise because of all that God has done. I mean despite this diagnosis, my child is breathing, eating on his own, and not needing to be connected to a bunch of tubes and wiring.  To be honest, while we stay in this room, I have no idea what is going on in the rooms next door and a

Good morning everyone. Today is Thanksgiving, and since I have so many things to be thankful for I will be writing today, as mom does all the spell checks. I want to first give you an update and then let you know all about being thankful. So yesterday my lumbar puncture was performed, without me having to be put to sleep. We are still awaiting to find out those results, as if they are negative, I will not have to get another until my next cycle of chemo. Which if I understand correctly will follow after some    repeat testing that will happen in the next week. I really wasn’t a happy camper yesterday. I mean mom and I didn’t sleep that great the night before. Despite me not having any fevers which is AMAZING! I did have a lot of  💩 , which has left my bum a bit sensitive.  I had some visitors come to see me, including my great-aunt (tante Dany) all the way from Miami. Oh and did I mention that my other great-aunt(tia Juana), made tamales earlier this week. I tried my fir

  Good morning. As you might have noticed we didn’t write yesterday. As you may have read Mac’s weekend was not much fun. Filled with fevers and lots of vomiting.  The planned chemo and lumbar puncture (LP), were put on hold. The plan now is for it to occur this morning, pending lab results and the fact that Emerson didn’t have any fevers yesterday.  It was a pretty great day overall. They have changed some things up ✅ put zofran (for nausea) as needed, and placed him on reglan  *does make his tummy more uncomfortable and he has got the  💩 ✅ stopping vancomycin (antibiotic) since he has had no fever       *well temperature has been hanging out at 99.5 ✅ still on fluids through his port ✅ checking weights, twice a day (currently @6.93 kg) ✅ lots of yelling in discomfort: not sure why ➡️ tummy or physical pain I will admit when Mac was crying inconsolably earlier this morning it was almost unbearable. I sat and pleaded with the Lord to remove whatever was aili

What is your faith anchored in? Well his Jesus has some disciples, whom he hand picked, and still doubted at times. Now Jesus could have just kicked him out of the crew? No he just continued to do God’s work, because Christ new who would truly be faithful to him. We have had some storm days so to speak. As you recall Emerson allowed you all to peak into the days as he experienced it. Well I can say this, me as his mother, though I may not be experiencing the physical struggles that Mac is going through, these past days have been an ordeal. I know for many of you reading I have been optimistic, and standing ground on my faith. Don’t get me wrong that has not wavered. I would say that my moments are when my flesh is weak: ✔️ I’m tired, and just want to sleep ✔️ I’m hungry, wishing I had 1 more arm (mostly to get a cup of coffee) ✔️ moments when I would love to sit with another adult and talk about taking Christmas pictures with my kids, and not what the plan

Good morning everyone. So it is pretty early in the morning. I figure I, Emerson, would right to you today. To be honest with you, which I pray I will always be, I’m exhausted. Now I am sure my mommy is too, she is the best, as I am sure I’ve told you. She is currently drinking a cup of this thing called coffee, some sort of juice from a brown bean. I’m hanging out in my rocking chair, playing with my activity scarf and watching Daniel Tiger. You do remember that Daniel is my middle name, and that Daniel in the Old Testament was a prophet.  I wanted to share with you my last 24 hours. Let’s just say they have not been very pleasant. One of the hardest things is not being able to speak. Now I do babble, but that is totally just to look cute. Well if you remember I received my 3rd intrathecal chemo session of Thursday with Cytarabine, that is the one that really just gives me the blues. It really does a work to my little body. Often symptoms are seen shortly after or maybe the d

I wasn’t able to write yesterday’s but I want to share the following between this post and next: my older kids and their experience, and the harsh reality of cancer.  Praying these days will be a blessing for you  ————————  Yesterday had been much anticipated. Grandparents Day! There was a schedule in place and everything: mass, slide show, visiting classrooms, and a final prayer.  The lucky participants my father Pere-pere and my mother-in-law Ayeya. Now I had my own feelings about all this, as I recalled special days like this growing up. I mean getting to have my grandmother come to school was like the best thing ever. So of course the kids made some wearable art pieces and put on a show. My father and mother-in-law enjoyed themselves.  So the kids were able to come and see Mac, and to have another adventure with mom. I can only hope that they will think of this time I get to spend with them as just that. Despite the gloom of the hospital I want them to still

Can I tell you that not a moment goes by that I have not come to loathe cancer and all of it’s wickedness. Though I’m not to fond of the medications that are used to treat, I can at least say that some things despite the effects are meant to do good.  *side note: it’s like you sitting there with the slice of cake or cup of ice cream, it taste delicious but you forget the cost to your health (sugar issues, weight gain)  I’ve been given this enormous binder with all sorts of information about AML, the process of diagnosis, treatment, recovery etc. I even have this app, called epocrates, I use it at work all the time, it’s basically a source to search medications (use, effects, way its processed etc). Our social worker is getting our information out to different foundations so that we can have an even larger net thrown for support.  Now you can look back on previous post that Emerson’s first week was rough. I had such high hopes with these past few days of Mac doing well. Well

  Today Emerson had a scheduled intrathecal, into the spine, chemo session, along with removal of spinal fluid, for some testing. This would technically be his third injection. The tricky part is that his previous procedures were medically considered ‘traumatic tap’. This basically means that when the needle was inserted, the fluid that was retrieved had blood present. Now that doesn’t stop them from testing the fluid and giving Mac his chemo. Dr. V basically wanted a ‘clean tap’, so that there was no blood present. Now in order to to do that, Emerson needs to be really still. Now how exactly do you get a 5 month old, whom your squeezing and folding to arch his back (like an accordion) to lay still? The request to sedate him was made, and with that means that I would have to give a final feeding to him, early morning until the procedure was complete.   If you can believe starving my little guy is not hard enough, but I hadn’t anyone coming in, until later. That meant I was solo, tr

  Hello everybody. So since we are dealing with some quiet days I figured I try to give my mom a break from writing. So here I am in all my 5 months on earth in a hospital room, connected to plastic tubing running into a button in my chest. What I keep hearing is that I’ve been diagnosed with ‘c’ word. Ssssshhhhh   It’s called Acute Myeloid Leukemia . From what I understand my bone marrow has way too much immature white blood cells. I had not heard about that before. I mean don’t get me wrong, I heard all sorts of medical terminology while God was busy putting me together in my mother’s womb. I am sure you may know my mommy is a doctor. So I have heard her talk a lot of talk about sugar problem (diabetes), pressure (hypertension), obesity (what is the rave on Takis?), oh yes and eat infections. I don’t know if anyone has told you but my mom is a rock star. I mean her patients love her, so much that they were willing to wait for her to return before seeing someone else. I am a bit

  Almost made it...we had been fever free since about last Thursday evening. With no warning this morning during the 4 am lab draw, it appeared that the dreaded fever was back. Well what does that mean exactly? Okay so I will start off with this, does this look like a face of a little guy who isn’t feeling well?   So the nurses and resident came back to evaluate him. Cultures are drawn, which is a specific lab to make sure that no infection is growing in his blood. I mean his immune system is basically obliterated as the chemo does is work. So that means he is susceptible to infections. They did re-swab his nose for those viral infections he managed to acquire last week, and they are still positive. Concern is that since he is so small he is obviously more at risk for infections overall.    So with all the checking and re-assessing this little guy was up sitting and babbling at 4:30 this morning. Could I make a suggestion in a situation like this: a single serve keurig in

     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 getti