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Sam's Leukemia Journey, Memphis, TN (2026)

09/21/2021

We received the best news last week. Sam had his labs done and all of his levels are back to normal. His CBC and ANC are both within normal ranges. It's been a long time since he has felt this good.

We are setting up his vaccine appointment, after he turns 12, in October. All of his oncologists, here and in Memphis, highly recommend the Covid vaccine. All of their patients, either currently getting chemo or having completed it, have been vaccinated. Neither Dr has reported any issues with their patients. This will allow him to go back to school during a global pandemic. What crazy times we are living through.

Sam continues to go in person to 1 class per day. He is loving being in school and cannot wait to go full time. He and I are completing all of his other work at home. We have found our groove, finally. It took a hot minute to get his head in the game. 7 months without school, or a set schedule, was a hard habit to break.

I am so proud of him. He went to hell and back yet continues to be positive and loving. His energy isn't what it used to be yet but slowly he is returning to normal.

Watching your child go through something like this changes you. I suppose watching anyone you love struggle through chemo would change you.

All of the kids and I raided my jewelry box the other day. I have lots of pretty things that were sitting in a box. Why? Not anymore! The kids now have their bling, and I get to see the happiness these things bring them. Why wait until I am dead to enjoy my pretty jewelry? It's a little thing, but it's also everything.

Live in the now. Wear your fancy jewelry, dye your hair, take that trip, say the things in your heart. You don't always get another day. Don't sweat the small stuff. These clichés never ring true until you face death. I am thankful we had this experience and we came through it.

We also got a dog! We scoured the shelters for days. We found our girl on Saturday. My last chemo promise has been fulfilled, and there were quite a few of them. We still don't have a fence, but Galaxy is a great big sister dog and is helping Mocha learn the boundaries.

We know his cancer story may not yet be over. There are lots of medical issues we anticipate for him in the future. Chemo is a poison. His heart and liver may have suffered some damage. We are monitoring these things closely. But we are not dwelling. Tomorrow isn't promised to any of us. Enjoy today. Keep your eyes open but don't be afraid. It doesn't do any good to worry.

We love and appreciate you all. Thank you for your prayers and love.

08/27/2021

We're home! It's been a little over a week. We are so happy to be home. It is wonderful to be with family again. 7 months was a long time to be away, but a shorter time than some children spend fighting cancer. We are lucky.

Surviving cancer during a global pandemic is crazy. All the typical concerns are exacerbated. Nothing really makes sense, but we are plugging along and getting back to normal.

We were advised not to send Sam back to school until he can be vaccinated in October. However, his younger sisters are going back to school and then obviously coming home, maybe with covid cooties. (Lily is fully vaccinated) Considering Sam is in advanced math, we decided to start a hybrid return to school. Sam will only attend school for his math period, I will teach him his other subjects. Western Pines Middle has been amazing. At every turn, they are supportive and flexible. We are thrilled with every staff member there. We could not have accomplished so much without their support. We are so grateful.

Sam loves going to school! His favorite subject is math. We feel very fortunate to be able to continue his education in a safe way. Once he is fully vaccinated, and his immune system numbers are up, Sam will dive in to full time school.

He is going to PT to gain his strength back. He is playing with his sisters and cousins and making up for lost time. It's been awesome to watch. For so long, Sam was not able to be a normal child. It's beautiful to watch him run and laugh and just forget all the pain he went through.

That may be the difference between a child fighting a disease versus an adult. Children forget so easily. They move on so quickly. Adults dwell and worry. That is not to say Sam has no lingering fears, we sure do. Until we reach 5 years cancer free, the likeliness of relapse remains high. Despite this, Sam has managed to focus on school and return to being a kid.

Sam will get labs drawn at 1 month, 2 months, 4 months and 8 months post treatment. Then we will return to St. Jude at 1 year for a bone marrow draw. I've already been notified of his annual appointment in the St. Jude app. While in FL, Sam will be seen by the doctor that identified his AML first. We feel confident he is in good hands.

It's hard not knowing what's going on inside of his body right now. We were so used to labs being drawn every 2 days. Now we wait until September.

All signs point to him being healthy and strong. We just focus on what we can see. The things he can do now that he could not do just weeks ago. He is cooking and riding his four wheeler. He is jumping on trampolines and playing lots of video games. Life is good.

Here's a pic of our boy coming out of class after his first day of math.

08/03/2021

We just got the best news! Today's labs show that Sam is officially beginning his recovery! He has enough of a functioning immune system to stop the prophylactic antibiotics and antifungals he was receiving daily. His body will heal even faster without this added stress.

Sam has gained weight and met his goal of 40kg. He was actually 39.95 but they round up hehe. He is eating, drinking and using his wheelchair less and less.

I have coordinated with his new school and the discharge team at St. Jude and a plan is being created for his safe return to our new normal.

Labs will be redrawn Friday the 6th, in order to confirm his recovery. If all is still on the upswing, he will then be scheduled for a bone marrow biopsy and his last chemo injection into his spinal fluid and brain on Tuesday the 10th. If the marrow draw still shows remission he will then get his port removed Thursday the 12th, leaving us able to return home Friday August 13th. Lucky number 13!!

Sam's care will be taken over by Drs in WPB and he will only be required to return to St. Jude once a year for a bone marrow biopsy. He will have labs drawn every 2-4 months in WPB and the results will be sent to St. Jude. Only if there is an issue, will we be required to come back to Memphis before the 1 year mark.

Needless to say, we are beyond thrilled to see the end in sight. This has been the worst and best experience of my life. Staring into the precipice only to be pulled back, and be ok, changes the way you see things. We have learned so much.

Thank you for being on this journey with us. Thank you for your prayers and love. Even though we truly were in this alone, we did not feel alone. Each and every one of you helped us along.

07/02/2021

Some pics along the way 😍

07/02/2021

These last few weeks have been a whirlwind of activity. I compose a letter to you all each night, as I wait to fall asleep. We are in the homestretch!

After round 3 completed, it was very difficult for Sam to eat and drink enough to stay healthy. His heart rate was up over 175 and he was very weak. We were admitted and he was given an NG tube. An NG tube is a feeding tube that runs up your nose and into your stomach. All of his nutrition was given through the tube. He improved tremendously, in just a few short days, and they removed it just in time for the family to visit.

The downside of an NG tube is that you can feel it in your throat. Sam refused to speak at all with it in. It was tough but necessary to get him well. Cue a visit with family and he had a full week of great food and fun. Matt, the girls and Gramma and Papa we able to lift his spirits in time for round 4 to start.

We were admitted for round 4 three days after family left. The NG tube was re-inserted and the heavy chemo began. He was stable for 3 days, then puked up the tube. Inserting an NG tube is awful. Sam receives light sedation but the process requires him to swallow as they thread it into his stomach. We made it through the 5 days of heavy chemo and home for a day before he puked it up again in our apartment. Being a pro now, he just pulled it out and threw it away. The nutrition staff gave him a 2 day trial to see if he could gain weight on his own. He gained .5kg and the tube is still out as of today. For 3 days he has been trying very hard to eat and drink enough to stay tube free.

Sam's ANC (immune system markers) are now at 0 as of yesterday. He received a platelet infusion yesterday and today we began the 3 IV antibiotics and 1 IV antifungal prophylactics. It will become increasingly difficult to eat and drink with all of the meds on board but Sam is determined. I'm just happy to hear his voice again. It was a eerily quiet week for me with no one here to talk to. Sam used hand signals and grunts. It was 24hr charades and I suck at that game!

So we plug along, hopeful things will go smoothly and we will be heading home soon. Our life will look a bit different. I've decided I am not going to return to teaching this school year. I am devastated and excited. Selfishly, I feel like I've missed too much of my girls lives these last few months, now I want full immersion. Going back to work full time would leave me feeling guilty. Sam was unable to participate in school after his diagnosis. There will be a lot of catch up to do. I plan to be there every step of the way. Middle school here we come!

I absolutely loved teaching. I felt like I had found my groove and I was pretty good at it. I will miss teaching but I know I've made the right choice. Although our time in Memphis is coming to a close, school starts early in August and we need to be ready. Mentally, I am not ready to be teaching again. I do not think I can give my all to it when my family needs me more now. Sam will be weak for a while. His body will take some time to recover and get back to normal. And I need to make up for lost time with Matt and my girls. I am looking forward to being a SAHM for a little while.

We are 4 days post his final round of chemo. The hard work begins now. You'd think the actual chemo infusions would be the worst part but truly it is how chemo works that takes it out of you. Little by little it shuts your cells down, the healthy and the diseased. It is Sam's job to build back up from 0 one step at a time.

We are hopeful that he will recover in 5-6 weeks. Here's hoping!

Love you all! Thank you for your prayers and encouragement.

06/04/2021

Hello all,

There is a child here at St. Jude who may not be getting the "happy ending" we all hope for. He has deep sea fishing on his bucket list.

Please let me know if you know someone or can refer a good company for a family fishing trip.

Another parent and I would like to help this family fulfill this dream.

Thank you.

05/09/2021

Happy Mother's Day ❤️

Today looks a little different from past mother's days, but I am beyond grateful for where life has taken us. Yes, some days are really hard. Yes, there are no guarantees. But I am here with my son, full time, no distractions. Our goal is to get him well and get home.

We are lucky. We don't have to worry that we won't be able to pay the mortgage, once medical bills begin to pile up. We have insurance and yet it still would have cost a fortune. Sam is on meds 24/7. Oh, and I don't have a job. Haha.

St. Jude has been a blessing. My husband, Matt, who I don't mention often, has taken the reins and become super Dad. This experience has taught him so much too. He's a full-time "single" Dad to 3 girls at the moment. (I do not want to incorrectly compare our experience to a true single parent, I know we have each other and that's different. Hence the quotes ;) ) It's been awesome to see him step up and know that we're going to be ok. We're going to get Sam healed and home and we are going to live more than we have ever before.

If you know me you know I live life pretty loudly. Like that saying, “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!” by Hunter Thompson.

I believe this now more than ever. Of course, I want to feel good, eat healthy and stay strong, but I want to make sure we all dive headfirst into life and really live. Enjoy every moment, especially the small ones. That's what I miss the most right now. Seeing my girls ratted up hair when they crawl out of bed in the morning. Gardening and building fairy gardens. RIding bikes around the neighborhood. The beach. God everything about the beach!! But mostly those memories are nothing without the people in them. Time goes by so quickly. Hang on. Enjoy the ride. Say yes more often.

Love you all and may you all enjoy your day with family and friends, celebrating those around you that make it all worth it.

05/04/2021

When your kid wants crawfish, and has never had them before, you have a crawfish boil! It was soooo good! We drove over the Mississippi to Arkansas to a little dive dish market.

04/29/2021

Day 3 of Round 3 inpatient.

So far Sam is tolerating this round of chemo very well. He is tired and feeling yucky, but he isn't vomiting and he's generally in a good mood.

The chemo this round is not as heavy as round 2. He is getting 2 kinds of chemo drugs. One of them is the same as round 2 but the dosage is lower. The drug name is Cytarabine and it was given every 12 hours at a dose of 2900mg each time. This round it is still every 12 hours but only 1400mg. The other chemo drug that he is receiving this time is Etoposide. Generally it is a well tolerated in children.

Other than a lack of sleep, our hospital stay has been going smoothly. We are definitely ready to be back in our apartment and not woken up every 2 hours.

I am hopeful that Sam's recovery will be better this round. Sam was very anxious coming into the hospital, anticipating a long and hard recovery. It seems his body has adapted some. 6 weeks of puking every couple of hours certainly took its toll.

We are also looking forward to seeing the whole family in June. Matt and the girls are flying in and Matt's parents are joining us. It is so nice to have something positive to look forward to.

We love you all and can't wait for this part of our journey to be complete and for real healing to begin back at home with our whole family.

04/23/2021

We just got word that Sam's latest bone marrow sample shows NO leukemia!! Last sample was slated at less than 1%. Now it looks like 0!

Your love and light and prayers are working! Higher powers are working through the hands of our Drs and nurses and the cleaning staff and everyone else here at St Jude to heal Sam and send him home with me.

Today is a yucky day for Sam but this is the best news. And Dr. Inaba calls personally with these results. He is the best 💖

04/22/2021

Tracy came to visit! We had the best weekend. Sam refused photos but I promise he was there 🙂 we got Jerry's Snow Cones. The best in Tennessee!!

04/22/2021

Round 3 has begun.

Our day started with labs to check Sam's levels before heading into Procedures. Today's menu was a lumbar puncture with methotrexate injection, bone marrow aspirate and iv chemo. It was a long day! We are back at the apartment resting now. I poured myself a stiff drink.

Sam woke and recovered well from surgery. The nurse had a snack and beverage ready for him, his order having been taken before lights out. He was so cute when he went under today. Usually there are a few tears once the propofol is hooked up. His anxiety creeps in. Today he was watching something funny on tik tok and smiling as the infusion began. He drifted off for a minute then popped his eyes open, giggled, and announced "you all sound like robots" before promptly falling back asleep with a big non-crooked grin. It was so cute! I hate the tears. This was way better. And he only has to go through this one more time, hopefully.

After the spinal chemo and the iv chemo Sam feels pretty gross. He vomited when we arrived at the apartment, in the bushes. Now he's relaxing on the couch, trying not to puke any more.

We hit a rough patch a few days ago when Sam suddenly developed diarrhea and nausea. After half a day of frequent bathroom trips that culminated in vomiting, I called the hospital. They answer almost immediately every time, day or night. It's amazing. I described, noted the times and frequencies, took his temp and the wonderful nurse on the line assured me we should wait it out for 24 hours. No need to rush him in. Sam had no fever and was still drinking well and nibbling on snacks. Not terribly alarming. By 24 hrs, and at our scheduled appointment, he still was not 100% so they took some blood and stool samples and sent us on our way. Turns out he has a C. Diff. infection. It's very common in hospitals, in cancer patients and in people on antibiotics for a long period of time. Check. Check. Check.

C. Diff lives in the bowls of 1 out of 30 healthy people. Good bacteria usually keeps it in check. Que the medically-induced low immune system coupled with 3 months of 24 hours a day antibiotics and POW, C. Diff is set free.

You all know how much Sam loves to take by mouth meds. So we get sent away with a lovely concoction he must take by mouth 3 times a day for 7 days. It's like some sort of sick joke. Give a kid who is nauseous and has diarrhea and who has a very real medicine phobia something his must voluntarily drink 3 times a day for 7 days. Nope. Sam broke down. Crying, shaking, refusing, pleading. So I let him not take the meds. We had appointments the next day and as a team he and I explained it all. He is totally freaked out and refuses, we need intervention. We will get help from the Psychology department to treat his phobia.

We skipped the meds, googled the hell out of pre and probiotic rich foods and we dove in to natural treatment. Natural treatment during heavy duty chemotherapy. It's ironic. But it worked. His normal flora has flourished, symptoms are improving and we were ready to begin round 3 today. Prop him up to knock him down. It's a wicked roller coaster.

Sam and I are now obsessed with miso soup. Miso is a wonderful probiotic rich food, so Sam and I are eating homemade miso soup daily. Dr. Inaba was thrilled! He eats miso soup every day too. We actually high fived! A real, hands-touching, pre-covid freak out high five. Then we sanitized like crazy but it really meant something to Sam to be able to connect with his Dr. and share a laugh.

It is terribly hard to know that I have to make choices for Sam and with Sam that go against the Drs recommendations. Not taking prescribed meds for a very real medical issue is terrifying for me. I felt helpless. There is so much uncertainty. So much that can go wrong. That is an every day feeling. Every damn day. No one feels good while going through chemo and watching your son struggle with it is infuriating and devastating.

But there are good days. We are able to carve out fun and special moments. We have great meals together, when Sam can eat, and we play games and watch movies. We are working our way through so many anime series that my mind is boggled. FYI One Punch Man is hilarious!!

There is always that worry at the back of my skull and in the pit of my stomach but I am hopeful that everything will turn out ok. Sam is so strong. He is so funny and kind. Cancer didn't teach me this, I knew how amazing he was all along. I don't want the world to miss out on all he has to offer once he gets out into the big wide world. He's just begun. His mind works in the most beautiful way. I know every parent here feels the way I do about their own sick child. I know not every parent will leave here with their child. We are hopeful that we will be among the lucky ones. We pray and we cry. We laugh and we sit sullenly. It's a bumpy road and full of uncertainties and sharp turns. We're hanging on and doing everything we can to get Sam healed and home.

We love you all and appreciate your continued prayers and love and support. Thank you so much for being on this journey with us. It is lonely doing this during covid but it is reassuring to know you are all there and that you keep Sam in your hearts.

Sam's Leukemia Journey

09/21/2021

08/27/2021

08/03/2021

07/02/2021

07/02/2021

06/04/2021

05/09/2021

05/04/2021

04/29/2021

04/23/2021

04/22/2021

04/22/2021

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