Sharing Toby's Story....What's a Blog??

Hello Friends, Family, & Fellow Believers in Christ,

So I have decided to start a blog so that all of you who have been praying for my little man can get updates on how he is doing. First let me start out by saying this blogging thing is confusing to get started (I clearly am not as good with technology as my sister). Secondly, here you go mom hope this helps! Now let me take you to the background story, hence Toby's Journey...

As many who read this may know, Jason and I were graced with the arrival of Toby Benjamin Smith on July 4, 2013. Yes after almost 30 hours of labor our dear little son decided to join us in the world and of course decided he wanted to see the firework show! The Lord truly is amazing in his creation, it truly is amazing to see how life is born (how can anyone think a bunch of cells just so happened to come together...crazy). 

Toby's Journey began the day of his birth. Toby was born weighing 7 lbs 2 oz, totally fine no problems, completely healthy except for one spot on his left shoulder that was red and appeared like a bruise from delivery. We were discharged from the hospital and everything seemed to be going well at home until two days before our two week check-up when Jason and I were doing the bicycle kicks with his legs to help with gas and I felt a large hard area on his right thigh (kinda felt like hip out of joint) but yet he was able to kick and move his leg without pain. Two days later was our two-week checkup and I pointed this out to the doctor, as well as a little small nodule that I also had found morning before on his right bicep area. She didn't know what it was either and had another physician come into the room and both agreed we should get an ultrasound of the area. Well the ultrasound lead to an X-ray which then sent us back to the pediatrician who then referred us to a physician at Children's National Medical Center. Let me just stop to say here that being a nurse doesn't always help one when it comes to your child being sick and having to endure tests (sometimes we know too much which then leads us to think the worse possible aspects).

The specialist we were referred, specializes in tumor disorders & Oncology. The word oncologist definitely will frighten any mother but especially a nurse as my mind jumps once again to the worse scenario possible and my nursing clinical's that I underwent. So week two of Toby's life was definitely a world-wind of events, literally...we went from healthy baby boy to him having to undergo a MRI, which required sedation and him to be put to sleep and then finding out that he had several more tumors was a little overwhelming. But God is good and knows what one can handle. Let me say here that I'm not supermom, nor will I ever-be (although us mom's like to think we are strong, let's be honest we aren't truly especially when left alone with our thoughts). When you are left with your thoughts as a mom these are the verses that I was given to help by fellow friends and brothers and sisters in Christ...

Psalm 62:8- Trust in him at all times, O people, pour out your heart before him; God is a refuge for us. 

2 Corinthians 12:9- But he said to me, My grace is sufficient for you, for my power is made perfect in your weakness, therefore I will boast all the more gladly of my weaknesses so that the power of Christ may rest upon me.
...Fast forward throughout the weeks, Toby has been through many procedures since July (two biopsies-one didn't have enough tissue), he has been put to sleep with anesthesia more times then I have in my 28 years of life in just the first few months of his. The biopsies in August after the MRI concluded that these tumors he has are all benign, PRAISE THE LORD for this. So we were instructed that we would just have to watch them and he would need is to be rescanned in November for another MRI to follow the tumors and we would just watch and see at this point.

November 7 Toby had his second MRI, Jason and I were actually at the pediatrician's office for Toby's 4 month checkup when the oncologist called and told us we needed to come in and go over results of MRI on Nov. 12th.  Once again a doctor not giving info over the phone is not a good sign (my mind once again went to assuming the worse case scenario and lead to sleepless nights). We meet with the oncologist the next day and were told that the MRI showed multiple tumors but that the previous ones had shunk some, the new tumors are in multiple areas of his body mostly attached to bones such as ribs, vertebrae, femur, humerus,clavicles, and lung. They then told us that we would need to go forward with a treatment plan for Toby and that chemotherapy would be the only way to treat. Within a day our world went from somewhat normal to crashing down around us in that one little word "chemo". Jason and I were both in shock and kinda just went with the flow of the day from more xrays, to a surgical consult for placement of a central line (in which Toby would receive chemo). Novemeber 13th (the irony) was definitely not the best day ever shall I say. The weeks and days that followed were also tough for Jason & I. November 19th Toby had his mediport placed and bone marrow biopsies taken and on November 26th we came back to discuss treatment plans for Toby. The bone marrow came back normal which is another answer to prayer, concluding that he doesn't have cancer but was given the diagnosis Infantile Myofibroma (Fibromytosis).






Infantile Myofibroma is a rare pediatric tumor disorder that doesn't have a lot of research out on because it is so rare, therefore the treatment plan is based on case studies that have been shown to work and attack the tumors present. This treatment plan include two chemo drugs. Toby will receive one medication once a week and the other is every three weeks and during those weeks he receives both. He will receive a follow up MRI at week 6 then towards the end of treatment depending on what is seen on MRI.

Toby's first round of chemo was Nov 26th and let me tell you that he is one strong little man. God has never left Jason, Toby, and my side. He has stood by us and we definitely have felt his presence although at times we feel frustrated, depressed, and fearful of the events and treatments that Toby receives. God tells us to expect trials as Christians in James 1:2-12 we are told to count this as joy when we endure trials as this testing of our faith produces steadfastness. I don't believe when James wrote this that he meant that we were going to be like WOOHOO my son has to get chemo, man I'm so excited to endure this; no I think that James clearly understands that trials are hard and we would struggle through them as he says in verse 9, "let the lowly brother boast"...this shows that he knew that trials wouldn't be easy to endure but encourages us as brothers and sisters in Christ in vs 12 as it says..."Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him."

So yes, Jason and I have our rough days and sleepless nights but we know that God won't leave us and he will never forsake us as his children. Toby is in His hands and He is the ultimate HEALER. He has a plan for our son and for our family and will stand by us every minute, hour, and day as we face the weeks ahead with chemo and more imaging.



Psalm 18:30- This God his way is perfect; the word of the Lord proves true; he is a shield for all those who take refuge in him. 

Thank you for praying for our family, keeping us in your thoughts, calling us, helping out and offering help and babysitting. We truly do appreciate all our friends and family that have surrounded us with love and kindness and look forward to doing life with you in the weeks ahead.




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