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!!
