The Day our Life Changed...and the year that followed Part 1 Diagnosis/Induction/Consolidation

As we come to the year anniversary of Thaddeus' leukemia diagnosis, I feel the need to reflect, and look back on the past year. I also hope that at some point this may serve to help a newly diagnosed parent deal with the news, by arming them with knowledge of what the first year will hold. With that said, here is a look back on what we have experienced in the first 365 days of battle with an ugly beast called childhood cancer...

This is where I still feel strongly our journey began... I think we can pinpoint his symptoms back to our Universal Studios trip where he hit his head on the side of the pool. Call me crazy, but this is the beginning of it all for me.

I remember these days, right when school started, when I would watch him sleep because he couldn't breathe. A trip to the pediatrician diagnosed him with a sinus infection, an ENT visit a few weeks later said mono. It all made sense. He had a stuffy nose. That was his symptom. People ask me all the time, "How did you know?" Truth is; we didn't. We are not the family who had been searching for answers, or watching their child be in pain. He had a very stuffy nose. In hindsight, yes he was pale and bruised, and tired...but the reason we went to the ER that night was because Thaddeus wanted to go so the "doctors could figure out what was wrong with his nose." 
           
This was such a fun field trip the Friday before he was diagnosed on Monday. These are the hard pictures to look at...he was so sick. How could we NOT know?!
            

The weekend before our lives changed forever...still living his life! Just with a stuffy nose, or so we thought. 

 

 

He never missed a beat at school...Fall Carnival, homework, pizza with the principal...it is a testimony to how strong his spirit is that we did not know he was literally dying before our eyes. 

 

Then there are these memories...the memory of the tackle football game he played two days before being diagnosed...when he was at his sickest. The one where he got tackled and he cried and we told him to keep playing...those are the things that haunt you. We didn't know but it does not make it any easier to remember. 

Two days after this picture on October 21, 2014 Thaddy said he was too tired to go to football practice. That was VERY unusual for him. We said he could skip, but by the time his dad got home from practice he wanted to go to the ER. He said just to finally get an answer for his stuffy nose. At the time we thought it was kind of silly to "waste" the ER co pay, but he never complains so we thought we better take him. On the way there I was worried that they would question us because of how bruised he was (duh...sign of a problem?!) When we got there our amazing nurses took us right back, and the Child Life specialist came to his room, and they drew the blood that would change the course of our lives forever. The nurses I think knew what was going on. He was so sick. Within an hour the blood was back, the doctor on call took us in the snack room and delivered the news...preliminarily your son has leukemia. She said it MIGHT be an infection, which we clung to for the night, but unlikely. 

That night went by in a blur of cat scans, MRI's, more blood drawn, before finally being taken upstairs to our PICU room that would be our home for the next scary days at 4:30 AM. (Jamie crying in the background when nobody is looking kills me...so hard)

                                                   

The next day, we met our NOW beloved Dr Waseem. He came and met with us to tell us that yes, our baby had leukemia. He also had a type of leukemia that is typically harder to get into and keep in remission- T Cell Leukemia. Thaddeus also had an extremely high level of white blood cells, 124,000 at diagnosis and all of his organs were on the verge of failure. He was a very sick little boy and we needed to move immediately to save his life. There was no time for second opinions or research, we needed to start chemo the next day. We were placed on the treatment plan AALL 0434 for T cell leukemia patients. 

The Facebook post you never think you will make...

Our baby has leukemia. He begins treatment tomorrow. We are terrified and devastated. We will be in the hospital for thirty days for the induction period which is the first chemo treatments. Then Treatment will go on for the next 2-3 years. To say that our life has been turned upside down in the last 24 hours would be a massive understatement. All our hopes and dreams for our sweet baby have changed to become a day to day hope for tomorrow. We love him so much and he's so special. I know God has prepared him well in his 7 years to be ready for this battle. We are surrounded by such wonderful friends and family for support. Please pray for tomorrow and that his body responds well to the treatment and it successfully kills the leukemia in the next month. Please call us or text and see when's a good time to visit him as be will need visitors and to know he hasn't been forgotten. Text him messages of encouragement when you think about it and above all pray for his healing, comfort, strength and ours. Pray for his brother and sister who love their baby brother and for us to be able to continue giving them the lives they deserve through this time.

In hindsight I truly wonder how I wrote that. I also sort of wonder how I could learn so much in the past year. I remember the mom who wrote this and how scared and devastated she was. I was not sure if we could do it. If we were strong enough. If we were smart enough...guess what? We were. 

So scary. These were taken that next day on the 23rd at 1:00 PM. We were taken back to have his first lumbar puncture (brain and spine chemo), chemo in his line, steroid dose, and get a PICC line placed. T cell leukemia has tumors (that was what was in his nose making him not be able to breathe) and our fighter had a tumor FILLING his chest. I had to show the nurses pictures to prove that he had not been confined to his bed the past weeks! They said he should not have been able to walk let alone play football, do gymnastics; they did not know who they were talking to! They said he was not stable enough to put under and do the surgery to get his port. He would have a PICC for over a month until the chemo could melt the tumors and allow him to be safely sedated. When they took him into the surgery room, that was one of the scariest parts of the journey to this day. 

Our baby who had been playing football two days before was now getting chemo and starting his life as a child with cancer...

                                           

Sadly, it was cold and flu season when he was diagnosed and with that comes restrictions on hospital floors. One restriction is NO visitors under 16. Well his brother and sister were unable to visit him for FOUR days! That was the hardest thing for us all. We finally got approval for a visit. This is the first time they had seen him or us since we left for a "quick ER visit" those days before. I know they were nervous to see him. They were scared, and sad...but they were so strong. They amazed me! 

                                                      

Thank God for Mema, Neal, Papa, and Chris. The forces rallied and took care of things at home so Jamie and I could focus on Thaddeus. Neal even caught a flight home from Reno the day we found out. Papa was on the first flight from Colorado...we were blessed with the help we needed to be there for Thaddeus when he needed us most.

This was five days in...the nurse told me there was NO way Thaddeus wouldn't lose his hair and it would be less traumatic to just cut it (it was 8 months before he lost it, so this trauma could have waited lol!) We had a hair cutting party. I hated every second of it. I hated that I cared so much. I hated that he had even lost the choice about his hairstyle. Not a happy day. 

By October 25th his white blood cell count had fallen to 1,673...so much better! The chemo was working. The steroids also were. Our babies smile was gone, and it was replaced by this face...

I couldn't bear it at the time. I thought his smile was gone forever. I did not know the steroids were an awful, high dose for the first 15 days and then we would not have them again for MONTHS. I thought THIS was our new normal. I thought the cancer had stolen my child's innocence. I am so thankful to say that once we stopped the steroids the Thaddeus we love quickly returned. 

The first 29 days is called induction. It is the first stage in leukemia treatment. We had been told we would be in the hospital for the whole 29 days (we were only there 11 though) It is heavy doses of chemo. And there is a lot of not feeling well.

Warriors also learn that they will be asked to smile and take pictures looking happy...even when they just threw up. 

We had another lumbar puncture in the hospital a few days after the first. This one, he was stable enough to have in his room. We found out here that his tumors had all melted. SUCH a blessing as his cancer was responding to the treatment. This is us trying to wake him up (he is notorious for not waking up...like a teenager. Now we know, here I was totally freaking out on the inside). Jamie and I sat outside his room and cried together during the procedure. It was the first time we had to cry out of his sight. We spent a LOT of time in the bathroom down the hall crying in those first days but NEVER in front of him.
                                                         
We thought we would be at the hospital for the month...then on Halloween they told us we were going home! Honestly, we begged to stay, but they said we would be better at home. They were right, but it was still scary to be the ones in charge of our child without them to help. We weren't sure again we could do it...but guess what? Again, we could. 
                                                                
A few days later we went to the clinic for the first time. This would become our home away from home for the next nine months. The first day we were scared and traumatized. We got Nurse Lyn as our nurse. She was the FIRST one who did not rip Thaddeus' skin off when doing the dressing change (now I do not go ANYWHERE without adhesive remover just in case!) That right off made her our favorite! 
                                                       
                                                       
We were introduced to this bell...the end of treatment bell. I cannot wait to watch Thaddy ring you on March 18, 2018!!
                                                         
You will become very close with your nurses, doctors, child life specialists... We have the best! Her name is Sue and she blows bubbles, brings in IPADs with games, and here was explaining to Thaddy about his port that he would be getting soon. At the time we could not figure out HOW getting poked each chemo treatment would be better than the PICC...how little we knew! 

On November 3rd Thaddeus did another bone marrow biopsy to check for leukemia cells. The results were that his blood still was showing 20% leukemia cells in his blood (it had been close to 100% at diagnosis) which was good day 8 results for a t cell patient. 
                                                           
Thaddeus started his Beads of Courage. This is a great program that recognizes all our fighters have been through. He did this necklace in the first 10 days...it was a little depressing for us all and he has never gotten another bead. This was an insight into the kind of warrior he is...he does not give cancer ANYTHING. Not even his thoughts. He does not even acknowledge he has cancer. 

In the hospital I feared our days of fun were over. That things would never be the same. Even in the first stage of induction Thaddeus had fun... he climbed to the top of a mountain, went to the Las Vegas Bowl football game (where we had our first outing with a medical mask...not too bad), played TONS of catch...

We also had family clinic days daily. In this stage we were there five days a week to get chemo. There were no breaks, and it was very strenuous. 100% of our time and thoughts were devoted to leukemia. When we were not at the clinic we were reading about leukemia, talking abut leukemia, and thinking about leukemia. It was very scary and very sad. We made the commitment in the beginning to do as much of this as we could as a family. The kids were all homeschooled and that allowed us to be together more (it also kept germs out of the house) We also promised Juliette and Christian to keep their lives as close to the same as possible. They still did all of their activities and we made every effort to focus on them too. So many siblings fall through the cracks. We worked very hard to make sure ours knew that they were not forgotten or less important now that their baby brother had cancer. It was not easy, but with all of our support we were able to do it. We all grew closer during this time. We were in it together. 

Thaddeus learned skills I never thought I would be doing let alone him like flushing his PICC line (and starting to get VERY puffy from the high doses of steroids he was getting). 

On November 13th we got the results from his day 22 bone marrow biopsy...it was not good. The leukemia cells had actually gone up to 26%. At that time we were told he would be in the very high risk category and that he possibly was not responding to treatment. We were devastated. It looked like it was not possible to go to 0% MRD (minimum residual disease) at day 29 and therefore we would be looking towards a bone marrow transplant. 

The day finally came, November 20th, that he was well enough to be sedated and get his port placed. 
   
While he was in surgery the doctor found Thaddy had a blood clot from his PICC line (Thankfully I had BEGGED before surgery to put the port on the left so his throwing arm would not be effected, because of that the doctor really tried and found the clot). This led to a new, awful challenge for us all; twice daily shots of Heparin for three months administered by Jamie and I.

Unlike nurses who go to school for years to be trained to give shots and do NOT have to give them to their own kids...we got one practice shot and then we were sent home with the injections. It was NOT fun...we thought we couldn't do it...but again we did. Are you seeing a pattern? 

Thaddeus was unsure about his port being accessed, but he was such a champ! He has NEVER had a problem or experienced any pain. Thank God for whoever invented EMLA (numbing) cream! 

This is his first LP in the clinic. He has had too many since this one. I remember looking at our doctor and feeling so thankful he was the one we were given to guide us and help heal our baby.

                        

November 24th came and we got our day 29 results...MRD was 0%. God had show up and showed off mightily! What man thinks is not possible is nothing to God! We were off the transplant route. We were overjoyed. We then began the second stage of treatment: Consolidation.

We learned there are no "days off" of chemo. You stick to the schedule. A chemo day fell on Thanksgiving, so as our clinic was closed, we were off to Sunrise Hospital. No rest for a cancer fighter!

                                                       

After 39 days of tubes, Thaddeus was un-accessed and tube free for the FIRST time since diagnosis for two whole days...it was AMAZING.

December 9th... we needed to return to the hospital for a blood transfusion. Consolidation was not the easiest stage. We were fortunate to only need one blood transfusion from then until Delayed Intensification 7 month later...

December 22nd we went to the Light of the World Christmas party...little did I know these women would become my family.

                                                          

I thank God for bringing them alongside us in this journey. Only families going through this can truly understand. They have helped so much. If you do not have a support system of other parents who GET what you are going through...find your people!!

                                                  

Cancer siblings learn so much. They learn to empathize, love, worry...like you never want your children to have to. These two adore their brother and never make him "be sick" alone. EVERY single sibling in this room, at this party, was exactly the same way. So much love. That is one gift we have all gotten from this journey.

On December 29th I took to Facebook and asked our friends to pray SPECIFIC prayers. So many wanted to pray but I knew they didn't know WHAT to pray for. I prayed over each name and possible side effect and then sent the request to the person. It took such a load off my mind to have HUNDREDS of people committed to praying everyday. I stand by this as the biggest hand in Thaddeus' success.

                                                        

December 30th he was able to start the second half of consolidation, with no delays which was awesome and fairly unusual. His blood counts have been so great throughout treatment. It has made it so we do not have holds and we got through frontline quicker than most due to that.  

This was a happy and sad moment on January 16th...I had already had to go back to work (Jamie was so blessed to be able to stay home for the year...I had to return in December. His school went above and beyond in helping him stay home while keeping his job. He did not get paid during this time, but he was able to be with Thaddy) but Jamie sent me this while I was at school to tell me that the clots were gone! Again, he was responding to the treatment...

January 22nd...more lumbar punctures. 

January 26th Thaddeus went in for routine chemo, a chemo he had two previous times but is known for causing allergic reactions, well this time he proved allergic. He swelled up and it was awful.

BUT, within a few hours he was out playing again. The kid is so tough and has such heart I cannot even grasp his strength sometimes. Unfortunately, with that allergy he could no longer have that very important chemo. He now was put on another plan. For every time he was scheduled to have the PEG he now needed 12 shots of another drug called Erwinaise. Sadly, he still had 5 doses of PEG left to get. That meant 60 shots. Not just any shots...horrible shots in his muscles. This was by far the most challenging part of treatment for Thaddy. I feel bad for our nurses because they knew on this day what we were in for...we had no idea. 

Two days later Thaddy was able to go to school and accept his Hayes Hero award. I was so glad he could go. It was his first time back to school since October. He loved seeing his classmates and teacher. He had been receiving homebound services since he had returned home from the hospital. That is where a teacher comes to your home a few times a week to do school. He had a great teacher; but it wasn't HIS teacher. He ADORES Ms. Peacock and he wanted desperately to get back to her class! It was nice as he had not lost his hair, so when the kids saw him they were not scared or worried. His Summerlin Hospital Child Life Specialist Jackie had gone to his class and done a lesson and left a Monkey in His Chair. The monkey collected his work and held his spot in the class so his friends were reminded of him daily. Nobody liked that monkey though, they wanted the real Thaddy! 

Consolidation was a tough stage that lasted 78 days. MANY days were spent as a family in the clinic. The days were very hard, but we somehow made it through.

At the beginning of February we finished stage two consolidation and were ready to move to Interim Maintenance stage three of treatment...