Teethin & Travelin

Well Tash's lab results came back and they look great! For a few weeks now we have tried planning a trip to Atlanta, the halfway point between Memphis and Orlando, and where my parents live. The past few times, the girls were healthy but Tash's counts weren't high enough to be able to travel. There are a ton of logistics going into these plans and everything has to work out perfectly for us to be able to execute this grand plan of all of us being TOGETHER for a couple of days. This time Tash's counts look great and were high enough for him to travel. Unfortunately God has another plan for us as both girls came down with a virus and are now on breathing treatments. Needless to say there is no way Tash can be anywhere near them...to say I am disappointed is an understatement. I haven't held my girls since January 4th....100 days to be exact. I trust that God has a plan for us to reunite (I sure hope he has that penciled in pretty soon!) I keep telling myself there is a reason we aren't able to see each other this weekend maybe it's preventing us from being involved in a car accident, or Tash spiking a fever when we are away from our doctors, or worse him catching something from the girls that would delay his treatment. So we will focus on the positive, his counts look good so we will start his HDMTX #4 on Tuesday. This will be his final HDMTX before we move into the next phase of his treatment. 

 I mean...does it get any cuter than this? 

Little man has been fussy this past week because he's TEETHING! This child is chewing (yes chewing) on his fingers non-stop. We've tried to give him a proper teether but he spits it out. He loves to shove his stuffed toys in his mouth or if you give him a blanket, he's good for about 2-3 minutes then we start the cycle again. Poor baby was neutropenic all week so we weren't able to give him Tylenol as it would mask a fever if he had one. So orajel and morphine it is (eek). We’ve only administered the morphine twice when he was just completely unconsolable. But more good news, today his ANC is 600 so as long as he isn't running a fever we can give him Tylenol if he needs it. Please pray that he doesn't run a fever so we can help alleviate his teething pain. 

Fingers are SO yummy!

His weekly therapy sessions are going great! He's SOOO close to rolling over on his own, which I'm still not sure that I'm excited about. There is something to be said for being able to put him down and know he's not going anywhere. Lord knows the girls were mobile way early and it has been working in our favor that he is NOT. Buuuuut I know we need to keep his development moving forward so we do practice tummy time multiple times a day (thank you Mimi). He loves watching himself in the mirror so he had a blast in therapy on Tuesday with the ginormous mirror. 

Seeing Double

One last good note....our Cubbies are looking fantastic! 

GO CUBS GO

A little Blue Plate action

 WE ARE #TASHTUFF!!

Count Recovery

Just a quick update, Tash is in count recovery right now, we go in tomorrow for labs and the plan is for him to have a spinal tap Friday morning followed by his 3rd round of HDMTX (high dose methotrexate). Tash will be admitted after his procedure, we’re praying that his MTX levels stay where they should be and we have a short stay inpatient.  

We had a great time with Daddy last week, we were hoping to make a trip to Atlanta for Easter so Tash and I could see the girls. Unfortunately, Tash’s ANC was too low, making his risk of infection high, so we couldn’t make the trip :( We will try again in April, fingers crossed he is healthy, the girls are healthy and we can all be together for at least a few hours. What I wouldn’t give for just one hug from them. 

GG came to visit us this week, we hadn’t seen her since the beginning of January and we are enjoying her company :) We picked up a Bumbo chair for Tash as he is growing restless in his bouncy seat. The new chair will be good for his core and back muscles which will make our friends in PT very happy. Tash had a few appointments yesterday one of them being physical therapy, they are very happy with his progress! Developmentally he is on course for his age in most areas...Yay for small victories! God is good. 

We were very spoiled this Easter, thank you to everyone that sent Easter goodies to us in Memphis and the girls in Florida. We are constantly overwhelmed with the kindness that is shown to all of us. We truly have the most amazing friends and family. If you are reading this, that means YOU. So thank YOU. We love YOU. 

We are #TASHTUFF!! 

THANKFUL

Well, we are still inpatient, they just hooked Tash up for a blood transfusion. But the good news is, we should be able to head home in about 3.5 hours. We came in Tuesday morning hoping to be discharged on Wednesday, four days later we're still here. He took a bit longer to clear the chemo which is why we haven’t been discharged yet. Tonight we will go home on fluids, and we will be back early in the morning for another reading of his levels but we will get to go home (YAY!). This will also be our first night alone. Mimi had to head back to Atlanta for the week. Jonathan will be here tomorrow afternoon so until then its just me and my boy. I know we will be fine but I have to admit I’m a bit nervous...

As I sit here staring out the window at this beautiful day I can’t help but have an overwhelming feeling of being thankful. I am thankful for so many things in life on a daily basis but today its like my heart is bursting. I am thankful that my son is healing. I am thankful that he can still continue to smile in between the aches, pain and vomiting. I am thankful that his doctors are fully confident that they will rid his body of the disease. I am thankful that we are here amongst the most brilliant minds in the pediatric oncology world. I am thankful for the sweetest, most caring nurses and doctors you could ever dream of taking care of your children. I am thankful for a loving husband who is raising our 2 daughters without their momma around and never once complains. I am thankful for in laws that other people only wish they had. They have moved in with said husband to help manage the day to day ins and outs of life for a single dad with 2 toddlers. I am thankful for my parents who have set aside their lives and plans of retirement to care for myself and Tash. They go weeks without seeing each other so my mom can be here with me and my Dad can take care of other out of state family members. I am thankful for the MOST supportive family and friends. I am thankful for friends that have become family and strangers that have become friends. I am overwhelmed each day with the love that is shown to us. It comes in so many different forms and fashions, I will spend a lifetime trying to pay that forward. I am thankful this opportunity has allowed me to grow closer to God. This last one is important.  Never in my life have I felt as helpless and vulnerable as I have since Tash was diagnosed...but each day my relationship with God grows and is strengthened, for that I am thankful.  

Well, I better start gathering up our belongings, you would have thought we’d been in here a month. I can’t deny it, we pack heavy. I’m sure the shuttle driver will get a kick out of me and all of my bags when I roll up. I bet she’s thankful I don’t always take the shuttle ;) 

We are #TASHTUFF! 

MTX Round 2

Just a quick update, we will be inpatient for another night. Tash isn't excreting the chemo as quickly as they would like. They discontinued his chemo about 2 hours early today, bumped up his fluids and gave him a diuretic in hopes of flushing the chemo out. The doctors are conservative with the babies and want to keep us another night and monitor his MTX (methotrexate) level again in the morning. Hopefully, his levels will be good and we can head back to Target House. We are looking forward to getting out and enjoying this beautiful weather before his counts plummet again. We all needed some fresh air so we snuck out to roam the halls with Tash for bit this evening. We ran into Dr. Pui, Tash was covered up in his stroller, Dr. Pui stopped in his tracks came over and said Hello to Tash.....it was such a sweet moment. 

Earlier this week, we had a couple special visits...my sweet friend, and sorority sister from NSU, Mandy Jo and her husband Dustin stopped by to see us on their way to Nashville. We are so thankful they took the time to visit us!! We also had the opportunity to meet Kristin & Chase. Chase is also a patient at St. Jude, he and his Momma live in Tampa and are friends with my sister-in-law, who connected us when we were diagnosed. It's such a small world! 

Mandy Jo & Dustin made a pit stop in Memphis :) 

Mimi & Tashy

Kristin & Chase - so happy to meet fellow Floridians

Post-Op with Ms. Lisa and "her baby" :) 

Sweet Boy

Roamin' the Halls

A Great Week

Happy Sunday! Its hard to believe one week ago, Jonathan was here and we were coming off of a wonderful weekend. I was so thankful they pushed Tash’s procedures until Monday (2/29). Usually when Jonathan is here we are inpatient and he doesn’t get to see Tash when he’s feeling “good”. But this time was different, we went for a walk through the park on Saturday and even hit our favorite spot for lunch, Young Avenue Deli. We had a "normal" weekend. On Sunday evening, we headed to the Medicine Room for pre-procedure fluids. We were anxious for Tash’s spinal tap and bone marrow aspirate the next morning. EVERYTHING was hinging on the results from his BMA. We were also anxious for his next round of chemo, this was a new chemo drug for him and I had read vicious stories about the side effects. As a parent its our instinct to prevent anything from hurting our children and here we are, pumping him full of chemicals that will heal him AND hurt him simultanesouly. 

I want to apologize for the lapse in blog updates. In the 2 weeks prior to last Sunday, we received the devastating news that a family at St. Jude had lost their infant daughter. I met the family on Facebook originally, I was drawn to them from the beginning, their daughter wasn't much older then Tash and had the same diagnosis. They had been here a bit longer than we had so I had reached out to them for advice and to show my support of their precious daughter. It breaks my heart to think of the pain they are in. Please pray for comfort and understanding for the Hardy family. 

In addition, I had also been consumed by support groups for parents of children with cancer. Some are targeted specifically to our diagnosis (infant leukemia), others are more general...these groups are intended to be a place for us to ask questions, vent, cry etc.  As I would wake in the middle of the night to feed Tash I would pull them up and scroll through. I was becoming increasingly more depressed and anxiety ridden about his diagnosis. It felt like every time I opened up a group I was reading another story about a child gaining his/her angel wings. I was terrified that would be us one day. Our primary doctors and my family kept telling me to quit reading them and comparing Tash to the other children, every child has their own journey...I wasn’t listening. I felt like if I didn’t do every ounce of research possible I was doing an injustice to my son.  So I would read all of the statistics, documented trials, every bit of literature on his diagnosis that I could. Those that know me well, know I like to research everything and be prepared for ALL scenarios. I am not spontaneous and I do not like surprises. I like a plan. I like to know every possible outcome and then I can make a plan for every possible outcome.  

Then last Sunday, I met Terri. Terri is Tripp’s Mom and an inspirational soul. Tripp is a beautiful boy that is also a patient at St. Jude. He’s a few years older then Tash, wears boots and is honestly the cutest cowboy I’ve ever met. Terri spoke of Tripp's testimony, I watched in her in awe. According to statistics Tripp is not supposed to be here with us, but here he is in front us, playing with toys and wait for it.....they recently found out he is MRD Negative. Terri frankly told me to quit looking around and look up at God. She was right. I needed to ask God for specific prayers and trust in Him. Trust that he will take care of my boy. Trust that He will heal him. Trust that he has paired us with the right doctors for Tash. Trust that he has provided them with the knowledge needed to find the right combination of medicine to beat this disease. I am so thankful that Terri flagged us down in the parking lot that evening. God put that meeting in place at the exact right time. I needed her. She didn’t know it but I needed her and His word in that very moment. I felt hopeful again.   

We had a late night in the Medicine Room on Sunday as Tash needed a blood transfusion before procedures the next morning. We headed back to Target House at 1AM and tried rest as best we could. We went in for procedures at 6:30AM Monday morning, it was 10AM before his procedure actually started, everything went fine as usual. They admitted us directly from recovery and we headed upstairs to 2 North (with our favorite nurses) to begin his chemo. We were surprised when we got to our room everything was up there from pharmacy (usually it takes a few hours) and they were ready to start chemo once they had a urine sample from Tash. Now with this new chemo they check his methotrexate level at 2 hours, 6 hours and 21 hours. This will help tell the doctors the level of chemo in his body and they can alter the rate at which it is administered. They wanted his level to be at 65, his 2 hour draw came back at 110. Which meant his body was not excreting the chemo faster then it was coming in. So they lowered his rate from 5.7 to 3.4. Now this is important to know because had Tash continued receiving the chemo at the original rate overnight his side effects would have been extreme because essentially he would have received double the amount of chemo his body needed. After talking with a few of the staff they said most times they don’t get the 2 hour draw because they start the chemo late in the day and there isn’t anyone there to read the results during the night. Just to note the doctors have to tailor the amount of chemo they receive during this particular round because each child metabolizes the chemo differently. When Dr. Gruber came in the next morning and said the “stars had aligned for Tash”. His chemo had to be delivered on time, we had to get the clean urine sample when we did, our nurse had to go ahead and get the 2 hour draw hoping someone would be there to read it before the end of the day, someone had to be there to read the level and alter the rate, all of this little things had to happen. And. They. Did.  It was more than stars aligning....God is Good. 

Tash slept most of the day Monday, which is typical after his procedures, I think he’s still coming off the anesthesia and his body is sore. I was happy he was comfortable enough to sleep through the chemo as well. Jonathan headed off to the airport to get back to the girls in Orlando and Mimi arrived to take over. Tash slept well Monday night. I was anxious for the results but was oddly calm at the same time. I knew, just KNEW his MRD was going to be negative. I just needed to hear the words from our team. Tuesday morning Sarah and April came in the room, I was sitting on the couch feeding Tash....I will never forget the look on their faces. Their eyes were smiling and they yelled, his MRD is NEGATIVE!!! We all smiled, cried, and said thanks to the Lord. It was a beautiful moment.  Mom and I spent the entire day thanking God, making phone calls to family members and just looking at Tash in awe. We had been waiting 2 months for this positive results. And now we had them. We had asked for specific prayers and He responded specifically. 

Overall, Tash handled the new chemo like a champ. His counts have dropped again but they are not wiped out so he will spend this week gaining strength for his chemo on Friday (3/11). They de-accessed him as well, so he can take a bath. A real bath! We’ve been giving him wipe downs since we arrived here in January. Because he is de-accessed we can actually put him in a baby bath. It’s the small things folks :) Cheers to a Sunday Funday! 

We are #TASHTUFF!!

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!!