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!!