Showing posts from 2019


The world keeps moving forward as time stands still for me, I am the kid with Cancer, locked in battle to be free. For all us kids on chemo our lives are put on hold, As we fight to stay alive, our chances good were told. Our attitude is courage we live this life each day, Just waiting for tomorrow, praying cancer goes away. Walking on the edge of life We're never looking down, United here in front of you, until a cure is found.  By: Lorna Mahan & Sinjin Andrukates So I have been writing for going on 2 months, and I have shared many pictures but I thought I would leave with you these images. Rather than posting each one, I figured making a collage would be less gruesome, but I wanted you to see what the reality of our little Mac fighting leukemia like a champ. So sit DOWN! Get tissues out, and maybe don’t look on by yourself.

Where is the light

Have you ever gone through a tunnel? Well if you haven’t it’s a great architectural effect. I mean often times a tunnel not only goes underground, but underwater. No matter how long the tunnel is, often times your radio will get interrupted due to the obstruction of the cement    that surrounds the tunnel. Often times there is the fun trick to see how long you can hold your breath until you come out on the other side. There is often a light, literally at the other end. That may look like the sun but it may be the moon, or the highway lights. " Your word is a lamp to my feet and a light to my path." -‭‭Psalms‬ ‭119:105‬‬ This past week I have felt like I have been in a tunnel, and as soon as I think I see light, it grows dim. Though my heart knows that at those dim moments to cling on to Jesus, it’s hard sometimes when my brain is led into temptation to think ‘just give up, God is not going to help your son.’ Of course my heart quickly jumps in to remind me that:

Our little Christmas

Hello everyone. Well although many of you may consider me to be a super mom, this mama crashed yesterday.  Let first get through the yucky part of it all, and then I want to share with you what a wonderful non-traditional Christmas I was able to spend with my family. So if you haven’t figured out by now Emerson is still in the hospital. He has completed the second cycle of chemo, which had a total of 3 medications via his semi-permanent line, for 5 days. This also included twice/week spinal taps (fluid being removed for testing, along with infusion of three chemos). Those infusions still occurr, twice a week, as the involvement in the brain had not quite resolved from first cycle.  Well this beginning this past weekend it was like we hit a brick wall ✅ no pee-pee diaper     *started on fluids, which at this point has caused 3rd spacing (rather than the blood vessels, enters non-functional space inbetween cells). It is day #6, and finally we got good diap

Christmas Eve thoughts

Many of you may not know this but I just love Christmas. Even as a child it was one of my favorite holidays. I mean 2 week vacation, which meant holiday camp at our school. The best part my aunt, Tante Dany, my mom’s sister, and her two boy’s Greg and George. Mind you they were quite a few years older than my sister and I, but they treated us like their sisters. I mean never did I not feel included. We had our typical    activities:  ✅ bowling,  ✅ watching movies late  ✅ basketball tournaments (me or my sister)  ✅ riding bikes ✅ midnight mass ✅ Christmas mass, where my sister and I sang ✅ the boys eating the last bit of everything in site ✅ yelling over the  🛁 It was the best of times! I don’t ever truly recall being fixated on the ‘stuff’. Although I distinctly recall getting under clothing as part of my Christmas gifts, of which I was so embarrassed! I also wondered why my mom and tante Dang stayed up pretty late the night before (wrapping presents). Boy were

Extended stay @ Ocshner

Good morning. It’s pretty early in the morning and well since my mom says it’s okay I’m going to write.  This SUCKS! I’m officially over being sick and this leukemia has got to find some other place to reside. I am fascinated at the fact that in my tiny little body it decided to come and create havoc.  My mom and the nurses have for the past almost 24 hours tried to figure out a way to keep me hydrated. I mean after speaking with the resident doctors, very calmly, without bossing, I was started on fluids as I have VOMITED so many times. I’m pretty sure my mom ran out of fingers and toes to count on. Even worse is that feeling of wrenching. I’m for sure that many of you have had the experience. The sensation to need to vomit, and it’s like a jerking in/out movement of your belly. I’m so over that! And then suddenly without warning here it comes, out of the mouth and the nose! Initially it was the color of big bird  🐥 , currently we are at Oscar the grouch. Yes I know I’m usin

Prayer warriors: unite

Top of the morning to you...oh my I sound like one of the Christmas movies I’ve been watching. It is currently 01:21 and all is not well in our humble abode of our room. Today was planned for a discharge, as Emerson was reciting his intrathecal (into the spine), chemo, and yesterday was day 6/6 for round two.  Of course my gut: wether that was mama or doctor or combination, I felt uneasy going home. I felt the need of staying at least overnight to see if all the  🤮🤢  would subside. Well the procedure took longer than they wanted as Emerson is just so strong  💪🏾  (even had to call in another physician to help hold this guy down). For them to complete the puncture along with injection of chemo, a medicine called ‘Ativan’ had to be given. So to say the least my little guy was ‘snowed’ which basically is equated to being sedated. So he slept for a long time, and by the time he did wake up, he was vomiting. Of course he wanted to eat right away, but that didn’t last too long, beca

Healing for Christmas

Good evening everyone. I hope you all enjoyed the meaning of Christmas from Emerson. He is such a smart kid for his realization.  Now I must say hallelujah as yesterday was day 6 of our cycle. That means today after Mac’s lumbar puncture with chemo, there is a possibility of us going home. Now set back from yesterday was that Emerson needed blood transfusion, which he received early yesterday morning. Now remember that not of the medicine he is getting is just given like an injection. Most of the medications run between 3-6 hours. That means his last chemo of yesterday ran into the early morning of today, followed by that blood transfusion.  Yesterday had been a bit rough to start. Emerson has vomited twice, one including nothing but bile (it’s the yucky stuff in your gut helping to break down food). On top of that he has a rash that almost looks like whelps. Otherwise he is one happy little guy. I’m trying myself to stay hydrated as I have had an upset stomach myself, a

From the desk of: Emerson

Good evening    everyone. Today is a new day of me kicking this leukemia’s butt. My mom is allowing me to write to you today and I’m so excited. Primarily because I’m feeling well, which may not be for much longer. I have managed to not have any fever or be on any sort of precautions. Let me tell you those yellow gowns and mask, I did not like. We still remain in a normal room, I’m waiting to see if we will be moved to the executive suite. It’s okay if I don’t because that means I should be home for Christmas.  Now word on the street is that there is a gentleman named Santa Clause, who you can ask for anything and he will bring it to you. Don’t you think it’s a bit silly that a random man would travel all over the world, basically sneaking into your home and leaving presents? Don’t forget eating a snack that you often had to labor over, those cookies.  Well let me let you in on the true story of Saint Nicholas. St Nick: learn about me by clicking Now I share this with y

A new day:: REJOICE

Good morning everyone. I will do my best to keep you all updated daily’. Currently if your subscribed to this blog you should get an email reminder when there is an update. For whatever reason that option is not working. So I currently have a little over 100 people in a group what’s app chat. Now for many of you who know how this application works. It appears the issue is when your notifications are on, as your phone is constantly chiming. Now I have suggested turning off notifications; and if there are messages you want to share directly with me, send privately, Rather than in the whole group. I understand it can be overwhelming.  I’m saying all this, in hopes for those of you without it; may download it so I can update you. I do not have any social media accounts so this blog has served as such a blessing to share in our journey.  ===•=== So like I was saying I am doing my best to write daily, but between me being physically tired, and dozing off mid-sentence, I would rath

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

Round 2: TKO

Today will include a play by play. Now for those of you who may not understand, well it’s going to a be a long post. So sit down and take your time to read. Once again here we sit awaiting to be called back to a room. "Whoever is slow to anger is better than the mighty, and he who rules his spirit than he who takes a city." - ‭‭Proverbs‬ ‭16:32‬‬ That is my hearts desire. As this is about the 6-7th time of starving my child who is solely breastfed, and this mama turns into a bear when her little guy is crying. I don’t desire to be rude to the medical staff. It’s just I feel it’s so cruel to starve the little guy.  Courtesy of our neighbor E.V. To catch you up, if you don’t already know: we are back at the hospital for a planned second cycle of chemo. My current feeling at the moment is  😴 . Honestly! I mean if you haven’t figured it out by now I’m pretty transparent about what’s been going on, especially with all my feelings and thought. No  🍭🍬🧁  coating

Make that a combo please

🥶 That is how we are feeling down here in New Orleans. I mean it went from like low 70s to upper 40s. We are not use to this sort of weather. The kids are all bundled up, and I can’t seem to put on enough layers in order to keep warm. Emerson, Ayeya and I are at clinic today. Mac has already had his blood drawn, and we are waiting to get our numbing patch placed. It will hopefully help decrease the pain of the lumbar puncture. Our hope is to get more than 1ml so that some can be sent for flow cytometry again. The thought is that Mac may have a bi-phenotype of leukemia, which means there is a combination rather than one focal type. This also means additional medication may be warranted to get rid of the bad cells.  We are currently waiting for the chemo medications to arrive in order to place the numbing patch. Poor guys, will once again be scrunched like an accordion. There are moments that I am grateful he is still so small that he won’t remember all of this:   ✔️ poking