A Month in Review & What's Ahead

This post is long overdue and frankly I’m not sure where to begin. We’ve had a lot transpire the past month! We are so thankful to be in the “continuation” phase of Tash’s treatment. Originally, we anticipated being able to return home to Florida in June, that date has been pushed back to late September. If we’ve learned anything throughout this process its that we cannot plan too far ahead, we have take each day as it comes. As you know by now I have a HARD time with this...needless to say I have been praying about this and asking God to help me relax and have faith in His timing. This also means I try to make a plan for EVERY possible scenario which we know is IMPOSSIBLE. 

Let me tell you a little about this phase of his treatment and what Tash has uphead. This “continuation”phase of treatment lasts 120 weeks. Each Friday marks the beginning of the next week for Tash, we are currently in Week 5.  We received a roadmap (which is like a calendar/schedule) for the first 6 weeks of continuation. Every Friday Tash gets IV chemo (different drugs on different weeks), if his counts are high enough he takes oral chemo nightly, which we administer. He is also taking a steroid (Dex) in 5 day cycles, although the side effects last about 5 days after he stops taking it. Oy. I think most of you are caught up on my thoughts about the steroids from his Facebook page, so I won’t go into too much detail. I know the steroid is a vital part of his treatment, they help keep his counts high and fight the leukemia as well but dang I wish someone could find another option that has less side effects for these kiddos. A little side eye for the steroids....

Tash has been handling the chemo relatively well, we can control the nausea, the nerve pain and some of the bone pain. Most days he is happy, smiley and a great baby. My heart breaks at times knowing he’s spent more of his life feeling bad/being in pain from these drugs then not. But it also allows me to look forward to the day that his treatment is complete and he’s running in the backyard with this sisters, feeling like a “normal” toddler. What a glorious day that will be. 

Tash had his first big boy spinal tap on May 13th. Prior to this Tash would go to the Operating Room (OR) for his procedures (spinal taps, bone marrow aspirates, etc.) It was a lengthy process as we would sit in Pre-Op for an hour, one person was allowed into the actual operating room with him until they put him under, then I had to leave. I also had to wear head to toe protection, we call it the marshmallow suit. We would wait in the OR waiting room for 30-40 minutes, they would take him to Post-Op where he would wake in a major state of HANGRY and I could finally feed him. Well, now that he is a big boy (<6months) he can go to Procedures for his spinal taps. I was a little nervous about what to expect, we love our team in the OR and anytime we do something differently I become a little on edge. Jonathan was with me when we went to Procedures, we walked right in (no waiting in Pre-Op)! We both could stay in the room while he received anesthesia, which is nice for me to have JR there, no matter how many times they put him under it NEVER gets easier watching your childs eyes roll back in their head and their body go limp. During his spinal tap we ran to Starbucks for coffee and by the time we made it back they were calling to let us know he was in recovery. Normally in the OR they wait for him to wake up before calling us back, but in Procedures we were allowed into recovery as soon as they were done. It was so nice to be with him while he was sleeping and then as he woke. I know we will grow to love the team in Procedures as much as we love our OR team. 

The next BIG date on our schedule is Week 7-9 (June 10-24), this time frame is the first of two re-inductions Tash will have while here in Memphis.  When we spoke with Dr. Gruber on Friday, she let us know she will not begin re-induction if he still has the enterovirus/rhinovirus. This is a very serious scenario, there are numerous things that can go wrong and I try not to go there...so please just continue to pray that Tash’s body will kick this virus on its own and his body will be infection/virus free before we start re-induction. From what I know at this point re-induction is similar to the first month we were here, its an intense block of chemo and will wipe out his counts again. It will be imperative that we keep Tash infection/virus free. We will have an impatient stay during this time as well. Tash is scheduled to have another spinal tap and a bone marrow aspirate (BMA) on June 10th. We are praying diligently that his MRD will still be NEGATIVE from the BMA. Again, if his MRD is negative this means the chemo is working, there is no detectable disease and we will continue on our current course of treatment.

Tash has been very sensitive the past few days, which we believe is a combination of teething and the cold. He wants to be held constantly, takes short naps and has little interest in playing. This has been a bit of a tough week as we feel trapped, with the walls closing in in the apartment. 

On a more positive note, here are a few highlights from the past month....Daddy came to visit, we took a road trip to Atlanta to see the girls, G, and GG, Tash had his 1/2 birthday, his first tooth came through, he rolled over on his own, Pap came to visit, Pap & Mimi let him try cereal (against my will), and he tried out a sippy cup! (Pictures below)

Please continue to pray for our sweet boy. Please pray that God hear our prayers for comfort from any pain for Tash, protection from any illness that would harm his body, that the leukemia cells are gone from his body and are not taking advantage of his body during this time while he is not receiving chemo. Please pray for his entire medical team, that they have the wisdom, discernment, and God’s guidance to continue to make these life altering decisions. Please pray for all of us that are struggling right now, struggling to have control over this situation, struggling to be able to "fix" things, struggling to be able to make a plan for something ANYTHING in the future. Please pray that we continue to have faith in His plan, His timing, and His will.  

We are #TASHTUFF!

Happy Memorial Day

Sippy Cup

Walking in Memphis

Man, its been a rough few days....Tash is extremely uncomfortable and crying. A LOT. I can only imagine this is what its like to have a baby with colic. One of the hardest things about him being so little is he cannot tell us what hurts or why he is crying...we have to go through all of the possibilities...is it side effects from the chemo? Is he cutting a tooth? Is it the new steroid he’s on? Are his counts low, does he need blood? Etc. There are different solutions/medicines for each of these scenarios and we don’t want to overload him on meds all day. The only time he is calm is when we play Jesus Loves Me on the iPad or when Mom and I take him outside for a stroller ride...and we walk, and we walk, and we walk some more. I need to start tracking how many laps we do around the Target House grounds...I’d feel better about eating that cupcake earlier ;) 

Stroller Rides This Week

We attempted PT and OT today but he was not having it so they cancelled all of our appointments and we headed back to Target House as he had a complete meltdown in the car. He’s due to go in Thursday for labs and some monthly meds but if he’s still super fussy tomorrow I’ll call clinic and have them run labs tomorrow. We are tentatively planning a trip to Atlanta for Mother’s Day. Tash’s medical team is doing everything they can to make sure his levels are high enough for travel. Jonathan, G and GG are doing everything they can to keep our girls healthy. We are all praying that it will work out and for a couple of days I can be with ALL of my babies and we can be a family of 5 again. What a glorious Mother’s Day that would be. 

While I am asking for prayers if you could add two of our St. Jude friends to our list I would be most grateful. Our friend Tripp, the toughest cowboy I’ve ever met was set to return home this past weekend to his family and start life cancer free. Unfortunately, they found out Friday his cancer is back, he returned to St. Jude yesterday and started chemo today. He is a tough little dude and we know with God’s grace he will be cancer free and he will again get to go home to be with his family. Another of our friends is Gideon, he and his family live on our floor at Target House. Gideon turned one a few weeks ago and began high dose chemo today to prepare him for an upcoming bone marrow transplant. He will be inpatient for the next month as he continues his fight. Both of these young boys are tough as nails and their families are strong in Faith. We know there is power in prayer and I ask that you please lift them up with Tash. 

Please continue to pray for Tash as this hasn’t been a good week for him. Our hearts break watching him cry as we try and eliminate the possible reasons why. I pray that God gives us the insight to help Tash quickly when he's in pain. I also pray its that darn tooth trying to break through and not something more serious. More to come on Thursday once we know how his counts look! Thank you for your prayers! We are #TASHTUFF! 

Found this near the Arcade Restaurant...one of our favorites, the song and the restaurant.
Seems appropriate given the walking we've been doing.

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!!