MRD Results Part Deux

On Wednesday, Tash spiked a fever so Mom and I packed our bags and headed to the hospital. We figured we would be admitted and we were right. He battled some vomiting and nausea on Wednesday and Thursday. His CRP had peaked at a 19 so they were debating on moving forward with his Spinal Tap (LPIT) and Bone Marrow Aspiration (BMA). Ultimately, they decided to proceed. Yet again he was NPO’ed at 4AM, but to our surprise they took him to the OR a bit early at 8:30AM. This “should” be his last LPIT for 2 weeks - YAY!! We do love our OR/Anesthesia team but I hate that he is put under so frequently and honestly he doesn’t need another hole in his back. 

The Dreaded Sign

Dr. Gruber came by the room around 6:30pm Friday with the BMA results. His MRD has decreased further to a 1.437%. Yet again, I was a bit bummed, I was so sure it was going to be negative. However, I am THRILLED that it is continuing to decrease which means the treatment IS working. Dr. Gruber was happy with his progress and called Tash a superstar! Well yeaaaahhhhh he is ;) She is confident that this next round of intense chemo will knock out the remaining leukemia cells. Since being admitted on Wednesday, his fever has not returned and his cultures came back negative for any infection, with that, let the next round of chemo begin! We were going to be admitted into the hospital on Friday anyway as Tash is beginning Day 22-26 of his protocol. This is a intense round of chemo that he will receive daily for the following 5 days. They had warned us that a common side affect would be discomfort making the babies fussy, along with some swelling. They began administering the chemo at 11pm (its a 5 hour cycle) so Mom and I prepared for a long night. I would feed him and Mom would walk with Tash in between feedings, to keep him quiet and comfortable. Its such a blessing to have her here, Lord knows I couldn't do this alone. Finally around 4am he fell asleep for the night and slept until 8am. Mom and I laughed when we woke up we felt GREAT - ha, just like college, its amazing what a block of 4 hours of sleep can do. Thankfully, he did better than we had expected Friday night. They haven’t seen how fussy a hangry baby boy  can be ;) 

We noticed Friday afternoon, prior to receiving chemo, his cheeks were beginning to swell (even more than they already were). When we woke Saturday morning, he couldn’t even open his eyes...it was awful. His mouth was swollen on the inside as well, making it difficult to nurse. After reviewing his counts, Jenn our NP figured out his albumin was low making him “leaky”. Leaky meaning the fluids were leaking from his vessels and not exiting the body via urine. They gave him some albumin and lasix (a diuretic) and his swelling was vastly reduced. He was even able to open those beautiful eyes. Poor kiddo, I kept trying to lay him down to nap but he was actually awake I just couldn’t tell because his eyes were swollen shut. Mother of year over here. 

BEFORE

AFTER

We spoke with Jenn about the timing of his chemo, overnight is not ideal as they have to change out the drugs and take vitals every 20 minutes to every hour. It never fails every time we get him to fall asleep there is a monitor going off or its time for vitals. Vitals being blood pressure cuff (which is awesome - said no.one.ever.), temperature and respiratory count. I completely understand they need to do it but it would be easier for us if those things happened during the day and not at 1AM, 2AM, 3AM, etc. So we are going to bump up his chemo regimen by 2 hours each day, so hopefully we can be discharged early evening on Tuesday. 

Bath Time with Ms. Tiffany

Patient services called on Thursday, a room at Target House had opened and they were ready for us to move. Mom went back and forth on Friday between the hospital and RMH packing our belongings for the move on Saturday. Mom and Seltzer moved our stuff to the Target House  yesterday afternoon so we have new digs for Tash this week! Our new address will be listed on the TashTuff Facebook page. We are movin' on up! 

Last night was a rough one. He slept in 45 minute increments, and he did not want to be put down. Again it probably did not help that his chemo ran into the wee hours. Tonight we will start at 7pm,  let’s pray he gets some rest today and starting earlier will help ALL of us sleep a little better tonight. His swelling is coming back so we will try the albumin/lasix again but before we do that the poor boy needs a blood transfusion. It just amazes the amount of fluid that goes in and comes out of his body on a daily basis. 

Midnight with the fishes

One day closer, one day closer, one day closer.....

We are #TASHTUFF!!

P.S. Thank you to everyone that sent texts, notes, and packages for my birthday. It has been a very emotional few days for me. Your positivity, prayers and support are so uplifting in these trying times. All things considered it was a lovely day. The only thing would have made it any better was being with my husband and my girls. Here is a video of the girls singing Happy Birthday. I am SO blessed.

DAY 19 - Birthmarks & Blood Transfusions

After a reallllly long night, we had a good day on Tuesday. Tash didn't go down until about 2:30am, he really wanted to be held all night. It's actually quite funny, he falls asleep in my arms, right when I go to lay him down one eye pops open and he gives me this look. He's non verbally telling me, don't do it woman, don't put me down. So I don't ;)

Check out my new bib! ROAR

He had his port dressings changed on Tuesday. Thankfully the triage nurse notices how red his skin was when they removed the original dressing. She called in some friends (line nurses) and they brought us some new tape and made the dressing considerably smaller. Along that note we noticed a hint of the Lontz birthmark. Say whhhhaaaaaa?!?! Neither one of the girls has the birthmark so we thought it may have become a thing of the past. But boom, the boy has a birthmark. I'm curious to see where all he has it but right now we see a hint of it on his stomach and legs. Pictures to come at a later date.

Is that a belly birthmark?!?!

The ladies love him :)

We met with Jennifer today so I could learn some alternative pain management methods (aka massage therapy). She introduced some simple techniques I can use on Tash to help soothe him. Of course I love the idea of non-medicinal pain management and look forward to the bonding time with him. The techniques she showed me can be used multiple times a day, not just when he is in pain. As if this child wasn't going to be spoiled anyway now he gets massages on demand throughout the day ;) 

Massage Therapy School

Unfortunately, he also needed a blood transfusion. His hemoglobin was down and he was looking pretty pale. With sisters in tow we hung out in the medicine room all afternoon. Wa-La 2 hours later and we're on our way.

Here's to an off day tomorrow!! We have lots of things planned as we need to get a box of goodies off to his sisters. We have some arts and crafts planned for Tash, let's hope he's on board with a little Crafty Cathy action.

WE ARE #TASHTUFF!!

DAY 18 - MRD Results & The Godfather

Apologies to leave you hanging, it was a roller coaster of a weekend. We were automatically admitted to the hospital for 48 hours due to his ANC being zero, combined with his fever. ANC = Absolute Neutrophil Count. Neutrophils are the key componets in the body’s defense against infection. A safe or “normal” ANC would be 500-1500. Tash’s ANC count is zero. Yes, ZERO, ZILCH, NADA. He basically has NO defense against any virus or infection. It amazes me how many things your body naturally fights on a daily basis and those of us with a healthy white blood cell count can fight. But these kiddos, undergoing chemo don’t have the ability to fight things like the common cold, its TERR-I-FYING. His cultures came back negative for an infection (YAY!) so they aren’t really sure what spiked the fever but glad it wasn’t anything too serious. 

We were hopeful for a negative MRD report (negative is .01% or less) but that wasn’t the case this time. Tash’s bone marrow results came back and his MRD is 2.8%. The doctors were also hopeful for a negative result and they definitely wanted it to be under 5%, which we were....but I was still crushed. I just knew it was going to come back negative......Tash received more chemo, including the extra dose of PEG (a chemo drug) on Friday. The Day 15 dose of PEG is the trial part of his treatment. His doctors are researching the likelihood of relapse with his particular form of leukemia. If your MRD results are greater then 1% on Day 15 then you receive the extra dose of PEG in hopes of lowering the chance of relapse in the future. So I am going to try and stay positive and think that that extra dose is just going to help lower his chances of relapse.

PEG & PAP

Dr. Pui, the head of Oncology at St. Jude, was on over the weekend so we had the pleasure of visiting with him while we were inpatient. Around here they refer to him as the “Godfather”....when he walks in to the room people stop talking, and it feels like time stops. The man is smart, like super duper genius smart...and here he was reviewing Tash’s case and eventually telling me it was going to be okay. After the nurse practitioner gave us the results of his bone marrow test, Dr. Pui popped his head in to our room and told me not to worry.....Tash was doing well and he expects his MRD to be below 1% next Friday. (Praise the Lord) It was comforting to hear that (especially from the Godfather himself) and I am glad he has that confidence but I’d be lying if I said I wasn’t worried. 

"The Godfather"

We had a clinic visit yesterday, Tash’s counts were low so he received a platelet transfusion. Its amazing how quickly you learn the patterns/routines. Mom and I knew he would need platelets before they even drew his blood. We had the pleasure of meeting a new nurse in the Medicine Room, Mr. Ron. We’ve seen Mr. Ron in the Medicine Room before, he has HUNDREDS of bracelets that his patients have given him over the years. He currently has about 360, and that does not include the 260 he had stolen from his truck a few years ago. I mean what kind of person steals bracelets....sheesh. Anywho, Mr. Ron has been a nurse at St. Jude for 20 years, he was such a sweet man and took great care of our boy. I’m sure he’ll be our nurse again and we can’t wait to give him a #TEAMTASH bracelet to add to his collection.

Nurse Ron

I was in a bit of a funk through the weekend....between the bone marrow results and missing Sloane’s birthday party, I’m sure I was a bit of a pill. BUT, today is a new day. Its Monday, the beginning of a new week and one day closer to remission. We were also “off” today, no clinic or doctor visits. Having an off day is much like a Saturday or Sunday for us. We have the opportunity to relax, refresh and rejuvenate. All of which are needed in this process. It also happens to be Pap’s birthday, so Happy Birthday Pap, we love you to infinity and beyond!! 

Cheers to a new week, a better week, with positive results ahead of us! 

We are #TASHTUFF!!

DAY 14 - FEVER & FEELINGS

It’s been a crazy 24 hours! About 10 minutes after I hit send for my last post, we were on the phone with the medicine room, and packing our bags to head to the hospital. Tash had not been himself for the previous 24 hours....we were hoping after his transfusion he would gain some energy (and color). His color came back but he never really got the energy we were hoping for. He also began vomiting and then the icing on the cake was the low grade fever. So, we were admitted to the hospital at 1am yesterday morning. It’s an automatic 48 hour stay, which is fine by me, I just want to make sure he is okay. On the bright side, the couch/bed in our room this time is pretty comfy :) He was able to rest from about 7:30-9AM this morning. He has been vomiting throughout the day so we have him on continual Zofran and Benadryl, alternating much like Tylenol/Motrin for all those parents out there that have been down that road. 

They sent his blood off to test for a bacterial infection, it takes 48 hours for the cultures so we should have an answer late tomorrow/early Saturday morning. They have been ruling out other things, the fever could also be from the LPIT (spinal tap) and transfusions. He is very sensitive to light and loud noise, if I didn’t know any better I would think the poor guy had a migraine. I am hopeful that he is able to rest tonight, his LPIT and BMA (bone marrow aspiration) is scheduled for 7:30am. Which means he is NPO’ed at 2:30am and they will take us to pre-op at 6:30AM. BIG DAY tomorrow, praying for positive results!

Today has been filled with a lot of emotion, worry for my sweet boy, and longing for my girls. It’s Sloane’s 3rd birthday. I never imagined I would miss a birthday let alone such a young one. I mean let’s be honest my kids won’t ALWAYS be with me to celebrate birthdays but I certainly thought I would be present for at least the first 21 (okay more likely to be 18, but a Mom can dream that they will still want me around until 21). FaceTime is a wonderful thing but it’s not enough, especially on days like today. Sloane is 3 so she has what we call “squirrel syndrome”. She can be having a full on conversation with you and something will catch her eye or she will hear a noise somewhere in the house and BOOM, she’s gone. Just like that she’s off to investigate and you are old news. So imagine me trying to keep her attention on FaceTime when she has people singing, presents to open, and new toys to play with.....yeeeaaahhhhh you can guess how that call went tonight ;) So again, thankful for the opportunity to see her and those taking care of her but DANG I miss my girls. I wish I could have been there to open her blinds and sing Happy Birthday this morning, help her pick out a pretty birthday outfit, take cupcakes to her and her school friends, have a special birthday dinner, sing happy birthday and watch her open presents. Most of all I want to be there to kiss her good night and ask her her favorite moment of her birthday. I can’t be there to do those things this year and she most likely won’t remember that I wasn’t there so I am grateful that she is surrounded by people that love her and did do all of those things with her today. I’ve never wanted to be in 2 places more than today. As I sit here and watch Tash, I will envision Sloane’s 4th birthday and know we will all be together. HEALTHY and TOGETHER. 

DAY 13-Becoming Regulars

Tash had another spinal tap yesterday. It took him a little longer than normal to come out of anesthesia, frankly I was becoming concerned. Finally, the nurse called the waiting room, he was awake and hungry hangry. As we turned the corner into post-op I could hear him crying, it was a relieving feeling at that moment. 

Whale-y Cute

We are becoming regulars in anesthesia. The "older" children have their spinal taps done in procedures but due to Tash's age all of his procedures are done in the operating room (OR). So we are making friends with the crew in the OR. Miss Lisa is our normal post-op nurse. She is a hoot and loves her some Tash, even though everytime she sees him he is hangry. Very. Hangry. (He gets it honestly ;)) He had a calm afternoon in observation after his procedure. 

Pap's Monkey

We headed in today for routine lab work. The results from his spinal tap were in, GREAT news, spinal fluid is clear of leukemia cells!! We will rejoice in this good news, but I want to explain this is just his spinal fluid. We will be checking bone marrow on Friday. Yes, his bone marrow aspiration and next spinal tap have been pushed to Friday. His platelets and hemoglobin were low today so routine blood work turned into an extra 6 hours at the medicine room. Platelet and blood transfusion. Luckily his sisters were here with him.

He seems to be inching closer to his old sleeping routine. (As I knock on wood) He had a good routine prior to diagnosis and then just like our life his sleep pattern did a complete 180. His days and nights were mixed up, his long naps  were in the morning and he wanted to cluster feed from 1-5AM. His rest is super important so we let him sleep when he wants and we alter our sleeping patterns. He is having difficulty with one of his oral antibiotics, in fact it made him vomit both times we administered today. I am hoping when we chat with his team tomorrow there is an alternate way to administer. He takes one of his other antibiotics in what they call an "eclipse ball" so we hook it up to his port, and we don't have to worry about giving it to him orally. Fingers crossed that is an option for his Levofloxacin. 

Pray for his comfort so he can rest tonight (Us too!)

We are #TASHTUFF!!

P.S. It's cold here. Like really, really, really cold.

DAY - MEET THE FLAT SULLIVANS

Flat Sully's

We've had busy couple of days, with long hours at clinic. A few folks warned us that a simple clinic visit for blood work can turn into a full day. They. Were. Right. We went in Thursday for lab work before his spinal tap on Friday. His platelets were low so he needed a transfusion. It only takes about 30 minutes for this particular transfusion, however we have to stay for 6 hours of observation after that. Just to give you an idea imagine sitting in an 8 x8 room with a hospital bed and two chairs for 8 hours - super fun right?! Mom and I take turns holding Tash as he's not super fond of laying in the hospital bed all day. Thankfully Mom is here and we have a TV in the room. It could definitely be worse....he could be an active 2 year old. Oy.

Tash had a spinal tap/chemo on Friday which meant he was NPO'ed at 4am, his procedure did not start until 10am but he was a trooper and stayed relatively calm. Mom walked with him for 2 hours in pre-op which kept him content. He was accompanied by the FLAT versions of his sisters (THANK YOU CHARLES, RACHEL, MAX and OLIVIA) We are very excited that the flat versions of Sloane and Scout will be able to join brother on his journey. The Stuarts also sent a flat version of Tash that we will send to the girls so he can be there for their adventures as well. First up, Sloane's 3rd birthday :)

Tash & Mimi

Happy Baby

Pre-Op with Mommy

In Recovery

Pap arrived on Saturday and is already re-organizing the room and making lists of things we need. Thankful to have him and his skills here with us. Tash is also excited to have another male around here ;)

iPad time with Pap

We have a big week ahead of us, another spinal tap on Tuesday, and bone marrow aspiration on Thursday (Day 15).  On Day 15, they will check his MRD status (MRD=minimal residual disease). MRD is the measurement of very small amounts of leukemia cells in the blood and bone marrow. If he still has leukemia cells in the bone marrow on Day 15, he will receive an extra dose of PEG (another chemo therapy drug).

Please keep the prayers a comin'!

We are #TASHTUFF!

DAY SEVEN - DAY OF REST

SLEEPY BOY

Good news from Tash's spinal tap, the presence of his leukemic cells went from 11% to 3% (YAAAAYYYYYYY!!!) in his spinal fluid. The power of prayer. Thank you to EVERYONE that has said even one prayer for our sweet boy, it IS working. Unfortunately, we did notice some abnormal swelling during his last diaper change at the hospital, he has a hernia, (I mean seriously?!) The doctors did some prodding and say it's not "emergent" at this time. He may need to have surgery to repair the hernia but right now they are hoping avoid it. It looks painful to me but they assure me its not, and as long as that part of his intestine is receiving blood flow, the surgery can wait.

MARSHMALLOW MAN (AKA DADDY)

EVICTION NOTICE ;) (DISCHARGE)

With the good news yesterday also came a large dose of our new reality, which was hard for me. We moved out of the hospital and in to outpatient housing. We are at the Ronald McDonald house right now, waiting for a spot to open up at the Target House. Most people may not know this but St. Jude has around 100 beds in the actual hospital. They operate mainly as an outpatient clinic. Which means we will shuttle to the hospital daily for "clinic". Clinic could be anything from visiting with our medical team, drawing lab work, blood, receiving chemo, etc. Our medical team gave us the day off (thankfully) to get settled and prepared for the upcoming days. Jonathan had to head back to Florida today. I had a daydream yesterday that we all went to the airport together and went home, like everything was fine and this was all over. Wouldn't that be nice?! ;) Jonathan is more than my husband. He is my partner, my best friend and my rock, I am selfishly saddened that he is leaving but also so thrilled for our girls. They NEED their Daddy. It gives me great comfort knowing they will have him home. Thankfully, Mimi is here in Memphis with me and Tash and Pap will be here this weekend. I truly do not know what we would do without our parents. No matter how old we get, we will always need our parents.

Mimi & Tash

Tash has chemo and spinal taps on Friday and Monday. Say a prayer for his strength, that he stays healthy and we receive more positive results.

KNOCK OUT CANCER

We are #TASHTUFF! 

PAIN MANAGEMENT

It's 3:04am and we just gave him his 2nd dose of morphine for the night. For those that know me well, you know I'm not a big fan of medicine. Listen, I vaccinate my children but I'm not quick to give myself or my kids medicine for every small thing that comes up. I had to be convinced by the pediatrician to give the girls the flu shot, heck the only time I've ever had the flu shot myself is when I'm pregnant because they practically force it on you. So to sit here day in and day out and force feed my child medicine continously is hard to swallow. I completely understand these drugs are going to heal his body but it doesn't make it any easier. I say that but at the same time I can't think of anything more excruciating than holding your screaming child and not be able to comfort them. I've always taken a little bit of selfish pride in the fact that when my kids are crying my touch will bring them comfort. Not the case with cancer. It is causing my boy pain and even my touch cannot ease that pain. I am shattered by this. So morphine it is. Sleep sweet boy we will fight this beast again in the morning.

DAY FOUR - DIAPER DUTY

We had a much better night last night! Our night nurse, Marcus was fantastic, he made our boy comfortable, shared his incredible story and helped us cheer on the Steelers, he's all good in our book :) I was also able to meet another Mom, who is here with her 14 week-old baby(who was diagnosed at 6 weeks). Her daughter has the same diagnosis as Tash. We actually met through a Facebook group for infants with leukemia (its a small network but an amazing resource for us). It was nice to meet another person who is in a similar situation, although I would never wish this on another soul on this Earth but again grateful to have another person walking the path with us. She gave me some tips on the coming weeks as we are still "rookies" amongst the folks here. Daddy and Tash had a dance party in the room to NEEDTOBREATHE. They have good taste in music ;)

His counts came back pretty good today so we are hopeful for a calm today as he has another spinal tap tomorrow. He is NPO again tonight so hopefully we can keep him comfortable while he is hungry and unable to eat. Poor kid, the steroids increase his appetite and then we starve him out. He's all Hey, I'm a growing boy over here....FEED ME.

Every time he falls asleep its time for more oral meds or he needs a diaper change. Newsflash for kiddos on chemo in diapers, it creates what they call "bottom breakdown" essentially a bad diaper rash. We have to use gloves to change his diapers and they need to be changed every 2 hours so he's not sitting in the chemicals. We lather him up pretty good with Desitin and we have special wipes to use. We are going to go through both of those like crazy.

One of the PCA's likes Daddy, she brought him a new throne ;) 

Pray for his comfort tonight and positive news after his spinal tap tomorrow!

DAY THREE - SASH & STEELERS

Last night (Friday night) was another rough night....he is uncomfortable and wants to be held all night long. He would nurse for minute and fall asleep, I would try to lay him in his bed and he would wake up, scream then cry and repeat. The combination of drugs he is on will make him irritable (amongst a thousand other things), he's in pain and is nauseous. They can't give him tylenol as it will mask a fever and the biggest risk for him right now is infection. I shudder just typing the word. I thought we were germ a phobes prior to him getting sick, but we had nothing on our new selves. I finally put him down successfully at 7am and slept until 8am. Que shift change and more meds.....Thankfully I was able to take a nap this afternoon, its amazing how 2 hours of sleep can restart your body. I guess that's how we survived college now that I think about it. We gave him a bit of morphine today to get him to calm down. He rested for awhile and had a good nursing session. Thumbs up for that. It's the little things these days.

I received my first crash course in giving him meds today. Yet another situation I never dreamed to find myself in....giving my child medication intravenously through a port in their chest. But again this our path to walk and we will find our way through. Our day nurse was Uh-Maz-Ing. It takes a special person to become a nurse...and to be a pediatric nurse that specializes in cancer patients is just plain divine. Christina walked me through the process....SASH. Saline, Administer, Saline, Hep. Boom. Easy right?! She sure made it seem doable and hey let's face it, I don't have a choice once we are outpatient. If everything continues to go smoothly, we will be discharged on Monday. That is a scary thought for me, we'll be on our own during the day and return to the hospital for what they call "clinic", which is when he will receive the chemo. St. Jude is beyond amazing for many reasons and one of them is they will put us in a room/apartment at the Tri Delta house for the first few weeks and then move us to long term housing for the duration of his treatment here in Memphis.

They gave him some Zofran (for nausea) this afternoon which has seemed to help tremendously....we watched the Steelers win tonight - WHOOP WHOOP! Here's to a good night!

GO STEELERS (Pre-Diagnosis)

Sweet Boy

DAY ONE (January 7, 2016)

Tash had what I would consider a great night, last night, he ate and seemed to rest comfortably.  A night that resembled a “normal" night in our house before our life was flipped upside down….except here he is in a hospital bed, with monitors running, fluids being pumped into his body and nurses in and out checking on him. If I close my eyes for a minute maybe I can pretend like we are back home.

Today is Day One of treatment. Words I never thought I would be using to describe the life of one of my children. Dr. Gruber (his primary doctor at St. Jude) confirmed the diagnosis from FL Hospital yesterday afternoon, Infant Leukemia, B-Cell ALL. Honestly, there was a part of me (a large part of me) that was still holding out hope that we were mis-diagnosed in Florida. I just couldn’t understand how this could happen to such a tiny person. He is just a BABY...a brand new BABY....MY BABY….but I have learned first hand cancer does not care about age, gender, if you are a good person or a bad one. It is savage and we will fight it.

I kept going back to his initial blood counts in FL. His blood count had changed so drastically while we were at FL Hospital, were they sure this leukemia?? Did the pathologist read the blood count wrong?? How could it go from 125,000 WBC to 17,000 (a much more "normal" number) just by pushing fluids....I didn't know it at the time but it wasn't abnormal for the counts to swing like that. I kept thinking its just a serious virus and it was a fluke blood result. This SERIOUSLY could not be happening to my sweet boy. I wanted more proof that this was really happening. I don't know what more proof looked like but its what I wanted. Yet another part of me was scared that if it wasn’t leukemia - WHAT was it? Would they fly us back to Orlando?? How many more tests would he need?? What if it was something worse than leukemia?? Which oddly enough was even a bit more worrisome. But that’s another story for another day. Today is Day One. 

#TASHTUFF