PT & NG Tube

I HEART MOM ;)

My First Valentine's Day

Picking up where we left off.....we were pleasantly surprised to be released Tuesday afternoon. Tash’s CRP continued to decline and he appeared to be feeling well. I always have mixed feelings to be inpatient, our 2nd floor nurses love Tash, the feeling is mutual, and we love them. They take great care of us inpatient, he is monitored closely, and we know the doctors are reviewing his counts daily. However, all of that comes with poking and prodding from the doctors, a jacked schedule for him, and sleepless nights for all of us. I swear he can sense when the blood pressure cuff is coming for him, its instant sad face. After a couple rough nights at home, we settled in to more of a routine. Pap arrived on Friday and worked to get us organized at the Target House. Mom and I truly hadn’t been here much to prepare for his arrival so he had his hands full this time. 

When Jonathan was here he noticed that Tash wasn’t moving his legs any more. When you change his diaper his legs are lifeless. He does move his feet so we were not fearful of a paralysis situation but are concerned in terms of physical development. In addition to no leg movement he no longer has any strength in his neck (aka Bobblehead - for real). We voiced our concern to the team here and they immediately set us up with the folks in Physical Therapy. The PT team agreed this is a pivotal time in his development and we are now scheduled for PT three times a week to work on strengthening his muscles again. The chemo had truly done a number on his body and any strength he had when we came in was gone. The team mentioned that with the older infants/toddlers they often stop walking during treatment and are referred to PT as well. Yet another reminder of how potent these drugs are that we are pumping into our children to heal them. 

PHYSICAL THERAPY

I was a bit down a couple of days this past week. We met with our nutritionist, Tash’s weight and height are not aligned and he is in the 3rd percentile of children his age. I wanted to say, yeah, well how many of those children are battling cancer, taking chemo, and vomiting multiple times a day?!?! But yet again I refrained. Up to that point he had maintained his baseline weight, frankly I was thrilled that his weight wasn’t declining. The nutritionist briefly mentioned an NG tube (A nasogastric tube is a narrow bore tube passed into the stomach via the nose. It is used for short- or medium-term nutritional support) and I think she could see the horror on my face. Not only is that another foreign object inserted into his body creating another source of infection but I felt solely responsible for his lack of growth. After all I am his single source of nutrition. No one tells you how difficult breastfeeding is when you have a baby. I take great pride in the fact I was able to nurse each of my children, it was not easy, it is not easy but I wouldn’t change a thing. So while the nutritionist meant nothing offensive (her focus is his nutritional supply and growth) I was offended. Again, my issue....not theirs. I spoke with Dr. Gruber she seemed to be in agreement with me, if he is maintaining his baseline weight then he’s okay. He is not a “normal” infant and his growth curve is going to look different. But, as the week progressed outpatient his weight began to decline. Mom and I knew it was coming, we were coming off the Ativant experience and honestly he still isn’t anywhere near feeling better. His better days just have less vomiting and fussiness then the bad days. He was looking frail and we could see it. I was crushed when his weight dropped to 4.5kg (9.9lbs). He was 8.5 lbs at birth and he’s 3 months old. I had a moment where I was looking down at him, between his weight loss and lack of muscle development, my boy had reverted back to a newborn. I don’t know why but this broke.my.heart. I suppose its because you imagine your children to be thriving and growing strong, and mine was going backwards and I don’t know what I can do to help him.  

On Friday we had clinic visit with Dr. Gruber, Sarah and April (our Dream Team). Dr. Gruber said Tash looked "perfect" and "this is as good as its gets". Meaning he had only a few mouth sores, his bottom breakdown was minimal and he was in good spirits. I constantly wondering how he compares to other infants on the same protocol, so its always nice to hear a good report from his primary doctor. Tash did need a blood transfusion and platelets, getting both of those on Friday would allow us to have the weekend off. Hallelujah! So we loaded him up with blood and platelets and headed home for a quiet weekend. 

Quick update from today (Monday): Tash's weight has increased back to 4.7kg, he is trending the right way. Praise God. His ANC is still zero, but hemoglobin looks good. He will need platelets tomorrow. We are hoping for a good week so his body can recover and we can begin the next phase of treatment. We savor these good days and thank everyone for the continual prayers and love. 

Walkin' with Mimi

Rockin' with Pap

Visit from Ms. Hayley

My Valentine

We are #TASHTUFF!

PAPA BEAR & MAMA BEAR

Its amazing how fast a week can fly by here. Apologies for going MIA, as always its been a roller coaster over here. Last Monday, Jonathan arrived and was able to stay through Friday, which was SO nice. Tash was so thrilled to have another male around here. Poor kid is surrounded by women ALL the time. One day he will like those odds but right now I'm sure he would like some extra testosterone around the place. Jonathan and I are one of those couples/family that does everything together so being apart for weeks a time is something new for us. We are learning to navigate through it but that doesn’t make it any easier. We were still inpatient when Jonathan arrived...One night he made me get out of the room, so we took T-man out for a walk once it appeared calm on the floor. Tash had to wear a mask, it looks more like a duck bill on his tiny face :) 

Tuesday was Tash's last day of that round of chemo. It was a very strong round of chemo, we pray it knocked out the last bit of leukemia in his body. He will be weak for the next few weeks while his body is recovering. On Wednesday we were discharged, our first stop - Young Avenue Deli. This was a weekly spot for Jonathan and myself when we lived here. We cruised through downtown and midtown like tourists gawking at the things that have changed (and the ones that haven’t) since we left Memphis almost 4 years ago. For a few moments it felt like life pre-diagnosis, a brief escape from hospitals, medicines, appointments, blood counts, the sun was shining and we were smiling. 

Ms. Christina - Discharge Day

Back at the Target House, we had a rough few nights. In addition to having his days and nights mixed up, Tash was super uncomfortable and nauseous. It’s a timing game to make sure you get his nausea medicine in him, feed him, and get his additional oral meds down at exactly the right time. If he throws up the food, he won’t gain weight or have the nourishment he needs. If he throws up the meds we have to re-dose and the vicious cycle begins again. It is trial and error on the timing but after a couple of days we were getting a hang of it. We had some fun moments as well, we ventured out and explored the Target House. Tash had his first Tula ride, he fell asleep in the Tula so he must have found it somewhat comfortable. Mommy spotted the craft room and all its glory. Anyone that knows me knows my love for all things crafty. Bring on the construction paper, paint and stickers. Jonathan just looked at me with the side eye but he knew....we WERE doing this! Daddy & Tash were troopers and entertained Mommy in the craft room. 

Home Sweet Home @ Target House

Tula Time w/ Tash

Daddy rocking the crafting smock

Twinsies

Handsome Boy

Friday came fast and was a busy day, Mimi arrived right on cue :) Daddy had to head back to Orlando, we had a great visit with him and look forward to his return. There is even talk of bringing the girls here when Tash’s counts are higher. I cannot contain my excitement at the pure idea of holding my girls again. 

We did receive an update in terms of his treatment and our upcoming road map. He is ending the “induction” phase of his protocol, which will be the next 2-3 weeks. They are allowing his body time to recover from the aggressive chemo with hopes that his counts will increase over the coming weeks. Once his counts hit specific parameters they will perform another bone marrow aspiration and spinal tap. Then we begin the “consolidation” phase of protocol. February 18th would be the absolute earliest this would happen, although realistically it will be closer to the end of February before we are there. Tash also needed platelets on Friday and his clinic team was brainstorming on ways to help with his nausea. We tried a new drug called Ativan to assist with his nausea and to see how he handled it. It definitely helped his nausea but it also knocked the kid smooth out. Like to the point that Mimi and I took turns sleeping because I was afraid he was going to stop breathing. NO JOKE. I was also concerned because he had never taken it before and I was afraid he would  have a reaction. His reaction was sleep, HARD sleep. It was like he was coming out of anesthesia, he couldn’t open his eyes and his whole body was limp. We had to wake him to eat, needless to say we won’t be using Ativan again, if I can help it. 

Sleepy Heads

We also had an appointment with Podiatry while we were in clinic on Friday. Tash had what we thought was an ingrown fingernail the week prior. They put him on some antibiotics for skin infections. Then we noticed skin around his nail beds was red on his fingers and toes. Long story short, we found out this was happening from the swelling he was having from the chemo and steroids. Now, I was a bit hesitant to clip his fingernails/toe nails as a skin infection could be very bad for him. The doctors referred us to Podiatry and said let’s have the podiatrist clip his nails to prevent any knicks since his ANC is still zero. Fast forward to our visit with the podiatrist. Mimi, Jonathan, myself, a nurse, a wound nurse and the podiatrist were all in a tiny room. Dr. Podiatrist comes in and lets us know the smallest patient he has had was a 2 week old. So here I am thinking oh, he’s got this then, nooooo worries right?!?! WRONG. The first clip, yes FIRST clip he cuts Tash’s toe. 

THE Wound

OH. MY. WORD. Seriously, did that just happen?! SER-IOU-SLY?!?!? You could have heard a pin drop in that room, no one uttered a word. He very calmly asked the wound nurse for some medicine that stops the bleeding. (Reference my note above, Tash was on his way to get platelets which means his blood won’t be clotting any time soon). Now in my head I went all “Bear on Leonardo DiCaprio in the Revenant previews” on this doctor. Or if you have seen the movie Mean Girls the scene where Lindsay Lohan goes primal on Regina in the cafeteria. Yep. That. Was. Me. 

 

Well, that's how it went it my head. It took everything I had not to act those scenes out but decided not to embarrass myself or my family. After all, this man did not mean to cut my baby. But damn that’s why we came to see him, so this wouldn’t happen. Dr. P kind of hovered over Tash I think to block JR and I from seeing what had happened but we could see the bloody gauze they kept switching out. It still makes me mad just thinking about it so let’s move on. Some ointment and gauze and we were on our way. Time for platelets....

Platelets with my seesters

On Saturday we came in for routine labs, it was a ghost town around here so we hoped to be in and out. We did talk to the doctor about the antibiotic he was on for skin infections. Prior to Friday we were about to ween off of that medicine since his finger had healed. But now after the toe incident we knew we would be on it for at least another 7-10 days. Oy Vey. Tash has a lot of trouble with the oral antibiotics, he can’t keep them down. Luckily the can put this one in an eclipse ball as well. PTL. So an eclipse ball later and we were on our way. 

So I'm going to need you to come in on Saaatttuurrrdaaayyy...

Tash slept well Saturday night, when I woke to nurse him around 5AM, he felt warm. Boo. When we first came to St. Jude I remember thinking how will I know if he has a fever of 99.4 unless I’m taking his temperature every hour. But you know. I knew the minute I picked him up out of his cradle, we were going to the Medicine Room. I took his temperature, 99.8, we packed our bags and headed in. Dr. Thomas was on Sunday morning, he was great. He told us he really wanted us to be able to enjoy the good days outpatient and Tash looked good and his fever had subsided. He was just coming off of 2 relatively good days. But this is also a critical time in their protocol because all of their counts are SO LOW ZERO. They were on the fence about admitting him but ultimately when his CRP came back elevated to 14 decided it was best to monitor him for 48 hours. So here we sit back inpatient, waiting for his CRP to come down, hoping the fevers stay away and cultures stay negative for infection. With any luck we will be out tomorrow but likely to be Wednesday. The attending that is on this week is conservative with the babies because they are so little and can “turn fast” as he says. I don’t mind the extra observation but it is nice to be “home” so he can relax a bit more. Good thing about being inpatient, the word is out on the 2nd floor about our handsome boy :) His nurses love him and we love them. 

Medicine Room with Mimi

Handsome Fella

We are #TASHTUFF!!

Our Journey to St. Jude

A month in review....exactly 4 weeks ago yesterday Jonathan and I were dealt devastating news....our 8 week old baby had leukemia. Some of you may not know the story of how we ended up in Memphis. Let me tell you how it began...

A few days before Christmas Tash began vomitting at night. It started out just once a night, we didn’t think too much about it. I thought maybe he had a burp that we didn’t get out or maybe he was overeating. Then it turned into 2 times a night, on Christmas Day the urine in his diaper was a rust color, he wouldn’t eat, and had a temp of 100.00. Technically not a fever in newborns (100.4 is the fever mark), but all of these things combined were unsettling to us. After opening presents we left the girls with my parents and headed to a pediatric urgent care. There was nothing urgent about our visit to their office, and quite frankly we were frustrated with the staff that did not appear to know how to handle a newborn. They took a urine sample which came back clear of infection and told us it was probably uric aid build up which can be normal in newborns. They also tried numerous times to draw blood, after fishing around in my boys arms and feet they were unsuccessful (insert angry emoticon here). We left thinking this would pass and it wasn't anything serious, hoping maybe the antibiotic I was on was causing the nausea/vomiting. A few days later we had his 8 week well baby visit at our pediatrician's office. He had started to act a little more normal and his diapers did not appear as discolored. Our pediatrician (who we adore) looked him over and said he looked okay, probably had a cold, and if he wasn't feeling better in a few days to come back. She also mentioned that he didn't look sick, and she didn't want to put him through extensive testing at that time (the marks form urgent care were VERY visible). I remember pointing out to her that his color wasn't normal, he was pale, like really pale. He wasn't pale at birth, in fact his skin was vibrant and full of color. I should have known. I should have pushed harder and followed my instinct - something wasn't right. Instead I felt goofy, was I that crazy mother that thinks something is wrong when everyone is telling me he is "fine". I even made a comment to my sister-in-law that our pediatrician unknowingly made me feel silly, she sees extremely sick kids every day and Tash looked relatively well to her. Kristi brought over her girls on Friday and we sat in my living room, discussing how blessed we were with healthy children. I had no idea in 24 hours my life would be drastically changed. Fast forward to Saturday night, Tash vomited 3 times...we called our pediatrician's after hours line, I could hear the concern in the nurses voice, get him to the ER immediately. We called Lauren to watch the girls, packed our bags and headed to the emergency room. 

Saturday Evening

We arrived at Florida Hospital around midnight...whenever you walk in with a sick newborn things tend to happen fast. Within minutes we were in Triage and they trying to draw blood. We've learned that Tash is not a good stick so yet again it took numerous tries to get a blood draw. The next thing we knew the ER doctor told us we were being admitted and started throwing medical jargon at us, we had no idea at the time what was ahead of us. Thats when they began to explain the reference range (normal counts) for his blood work. A normal person would have a white blood count of 10,000-14,000, he count was 125,000. A normal person would have a hemoglobin of around 10, his was a 5. You get where this is going. I vividly remember one of the nurses bringing me a hot blanket to wrap Tash in, she looked me square in the eyes and said, "You're son is very sick." I knew at that moment, it wasn't good. I will never forget her face or the tone in her voice, she wasn't trying to alarm me but it was as if she knew the battle ahead of us and was praying for us at that exact moment.  I wish I could find her and hug her. 

They immediately moved us upstairs to inpatient, I remember them pushing his crib down a hallway, that's when I saw the sign. Hematology/Oncology. Panicked I asked our nurse WHY are we on the oncology floor. But I knew, deep down in my soul, I knew. She mumbled something about sharing floors with other departments but I knew. I knew my boy was sick.....really, really sick. The floor doctor came in and told us they were moving us up to the PICU as she did not have the nursing staff on duty to give Tash the care he needed. I am grateful she sent us upstairs, we met some amazing doctors that were very good to us. 

We moved upstairs and met Dr. Avin, he was sweet and calm. I needed calm at that moment because I was freaking out on the inside. He let us know they were running additional tests to rule out a severe infection. If it wasn't a severe infection then we were possibly looking at cancer/leukemia. I tried to convince myself this was an infection, just a bad infection, they would pump him full of antibiotics and this nightmare would be over. I was wrong. 

Early Sunday morning, Jonathan ran home to check on the girls and pick up some more clothes, we were going to be there longer than expected.  While he was away a nephrology doctor came by and started spewing words like stress on the kidneys, dialysis, renal failure...honestly its a bit of a blur...my mid was racing, what is he talking about...this is my baby. My newborn baby why are you talking about these things.....after all I was still hoping this was a nasty infection. Next came the oncologist. I knew, I knew when I saw the look on his face. This isn't good. Yet again someone was trying to comfort me, but NO ONE was saying it. NO ONE was telling me what was wrong with my baby. He had leukemia, why wouldn't they tell me that. I just needed someone to SAY IT. Otherwise I kept holding out hope this was something else, anything else. Finally, I asked Dr. Barerro, are you SURE this is what we are looking at...his eyes were sad and he nodded his head yes. I frantically called Jonathan, telling him to get here NOW, they are using words like cancer, leukemia, etc. THIS. WAS. HAPPENING. 

That evening we met a wonderful hospitalist, Bernadette (attending doctor on the PICU floor). She came to our room and told Jonathan to wake me up, he knew it wasn't good. Tash's CT scan had come back and there was an "event". I remember thinking they make it sound like a normal thing when in fact it was the complete opposite. Now they were using the term brain damage. Wait, what?!? I thought he had leukemia, now you're telling me has potentially irreversible brain damage....this IS NOT HAPPENING! But for some reason I went into mode, fine he has brain damage what do we need to do to prevent anymore from happening. My whole world went dark and I had tunnel vision. They were immediately going to start dialysis on his blood to try and remove some of the leukemia cells. We needed to prepare ourselves that this effort may not work. We were devastated. We thought we were devastated when they told us leukemia, that was the least of our worries at this point. We just sat there staring at each, not saying anything, taking turns crying, watching them bring in equipment to begin the procedure.  An hour later the doctor came back, good news, the scan was originally read by an adult radiologist, she sent it for a second read and this time a pediatric radiologist read the scan. It was NOT a brain event. The scan was "normal" for an infant and he appeared to be fine, no brain damage. We went from our lowest low to the highest high. At that moment I literally felt like I was jumping joy, its amazing how now the diagnosis of leukemia ONLY didn't seem so bad in fact it was great. We could beat leukemia. 

After the roller coaster of emotions that night, I had a melt down. How did this happen? How is this our life? Why is this happening to my sweet child? Did I do this? Was it something I did while I was pregnant? How could I have prevented this? Did I do something horrible in my past to bring this on my family? Your mind goes everywhere and anywhere in those moments in the dark. Jonathan held me, assured me it was nothing I had done and we would get through this. Tash WILL beat this. I am grateful for my husband for so many, MANY reasons but one thing I cherish about our marriage, we are strong for each other when the other needs it most. Thankfully we are never weak at the same moments. We are both competitive, focused, task oriented and driven. You give us a mission we will complete it, albeit we will not take the same route to get there but we will both get there :) So we CAN do this. We WILL do this. TOGETHER.

We asked the head of pediatric oncology at Florida Hospital how many cases of infant leukemia had they seen....he responded, "Two". Two?!?! Are you kidding me?! That can't be right....but it was, this is a rare diagnosis. That's when our wheels starting turning and we knew in our hearts we needed to be somewhere else. As we sat there that night, we started to talk about St. Jude's. As most of you know Jonathan and I met in Memphis, just steps away from St. Jude. We had volunteered here together and even dressed up for their big Halloween event. With Jonathan dressed as Spiderman, we had walked these halls trying to bring a smile to the face of young patients. I never dreamed we would be on the other side of that door one day. We asked Bernadette that night, should we stay in FL? Should we go to Memphis? She was being vague and beating around the bush a bit. I finally looked her in the eye and said, If this was your child what would you do? She replied, "St. Jude's is the best, I would go to Memphis." Jonathan and I looked at each other and we knew in that moment, we were going back to Memphis. 

The next day is a complete blur, we reached out to friends, past business associates, anyone that could connect us to the folks at St. Jude. Jonathan was relentless. We always joke he is an operator, he likes to execute, after all he puts out fires all day. Looking back I am so grateful he handled EVERYTHING and just let me be with my boy. Tash was my focus and Jonathan knew that. While Jonathan worked feverishly to get us accepted at St. Jude, our oncologist at Florida Hospital was making calls too. Oddly enough he is on the Board of Governors at St. Jude (there are only 35 doctors in the U.S. on the Board). He was in our corner and was going to do what he could to get us here as well. Back at home, the troops had arrived, Jonathan's parents and my Mom were there within hours. They jumped to take care of the girls and help explain where Mommy, Daddy and Tash were. They made sure the girls stayed in routine, dropping them at daycare and then coming to the hospital to support us. We are eternally grateful for every ounce of help we have received. Thank You just sounds silly as it doesn't begin to cover the gratitude we feel. 

Later that day, Tash and I were on a plane to Memphis, with Jonathan not far behind us. I met the critical care team that would be flying us to St. Jude. They live in Arkansas and had the southern twang I had missed so much. As soon as I met them, I knew we were going to the right place, with the right people. I felt at peace in that scary moment.They could see the worry on my face, we talked the entire flight. We talked about their kids, their dogs, their job, anything and everything except for how sick Tash was. A 2 hour flight felt like 20 minutes, I hope to one day be able to thank them in person for knowing what I needed at that moment. As we descended on to Memphis, the view was so familiar to me. I had flown in and out of Memphis more times than I can count over the course of the 7 years in which I lived here. But this time it was different. 

First Flight

First Class Seats

They took us straight from the tarmac to an ambulance which dropped us into St. Jude. We were bombarded by the most amazing people. Everyone and I truly mean EVERYONE is caring, compassionate and positive. Positive that they WILL cure our boy. Our sweet boy. Their attitude is contagious and flows throughout the air here. So that is the short version of journey to St. Jude. I'm sure some of you are thinking short version?!?!? Whaaaa?!?!?! That's okay if you ever want the long version, give me a call ;) 

We have had many firsts/highlights over the course of the past 4 weeks here are a few:

Swole.

Beanie Caps..we don't have those in Florida!

A spoonful of sugar helps the medicine go down...

Mom & Mimi forced him to watch the Bachelor ;)

For our NOLA peeps...he got the baby!

Checking out the fake fishies

Ladies Man

Craft Time - He LOVES it ;) 

We are #TASHTUFF!!