Wednesday, March 30, 2016

Walking by summer

Dom has made it his goal to be walking without his cane by summer.  He had some serious stretching today at PT. Thanks Mrs. Amy!








We love that there are inspiration quotes at Dom's PT office.  He is definitely progressing much quicker than we ever thought.



Tuesday, March 29, 2016

Ombre

As predicted, Dom now has an ombre due to being off his Pazipanib for 3 weeks. His brown is starting to come through. Countdown to the reverse skunk look when his gray returns, now that he is back on the Pazoanib.

Saturday, March 12, 2016

Nothing can stop him!

This guy! Not only got himself up and went to play at his desk, but came into my room by himself because he wanted to give me a kiss. No stopping him now!

Friday, March 11, 2016

Grateful

As I lay under one roof with my family tonight, sooner than I ever thought, I am praising our Heavenly Father for His hands that cared for our son and family this week. Thanking Him for the support of family and friends through prayers, cards, gifts, flowers, words of encouragement, visits, etc. The amazing medical staff that cared for our guy. Grateful for every person that has touched our lives so far in this journey. The journey is far from over but He has carried us this far and isn't about to let us down now.

Outta here!

We are rollin out of this joint. As we were leaving, his surgeon visited and also informed us that the margins of what they took out were completely clear of cancer. So, no more radiation needed. He will just start up his Pazopanib in 3 weeks, for 12 more weeks to make sure any microscopic cells are destroyed. Great way to end the visit!



Heading Home


Praise! We are heading home today! Working with OT in daily things.


The good, bad and the ugly

This picture means drain is out. Another step to going home. We are calling it Dom's shark bite.  The top of the page his is belly.  So the scar is on part of his lower belly and thigh.



In keeping it real, not pretty. His wrap was taken off today. This reminds me of when my dermatologist sent me to a plastic surgeon for a mole removal on my face because she said "we just close, not make pretty." Dom's thigh was closed by plastics, calf closed by neuro. 



Thursday, March 10, 2016

Praise, no in patient rehab

Received word today that Dom will be able to be released and do outpatient PT, possible OT. Praise that he is doing well enough to not have to go to rehab center.

I can do all things....

Our boy this morning before getting up in the walker, he stopped and started to pray about what he desires for the day with getting around. Then after amen, he says "I can do all things through Christ who strengthens me". Love his heart and that he knows where his strength comes from and asks.

Wednesday, March 9, 2016

1-2-3 Victory

My cousin shared this song by one of our favorite artists the other day, because she thought of Dom. After today, I thought it was a great time to share. 

On the move



This picture is the first Dom got up to walk post operation. This was 2 days after surgery.  He did a great job and the therapists were so impressed, they had him try stairs the next day.  This was to prepare him when he gets home, since we currently have stairs.



Tuesday, March 8, 2016

Love his heart!

Our boy doing his thing. I just heard him say to his nurses "thank you so much for taking such good care of me". Love him!

Determined

Happy boy. Allowed to eat whatever today. Also, he should be moving to a regular room sometime today.

Battle Wounds

Dom's battle wounds. He has a wrap on his calf where they took the nerve to use for his thigh. Neurosurgeon was happy with the amount of movement he had last night.

Monday, March 7, 2016

Perfect devotion for the day

Once again, perfect for the day. Praising our Lord and Savior this evening for His hand in taking care of our boy.


Out of Surgery

I asked Dom about a pic for Dom Squad. He agreed with a smile. Proud of this guy! Dom is in the PICU and will be resting with little movement for about a day. He is still out of it, but gave a smile when he saw us all. 

Surgery Update

Dom's neurosurgeon came out for an update. He has completed his portion. He was able to remove the tumors with clean margins. He did a nerve graft from his left calf, along with a cadaver nerve in hopes of possible giving some function back to the thigh. Unfortunately, the calf nerve had some neurofibromas, so he isn't sure if it will take. It will take about a year to see if it is successful. He will be unable to bend at the knee or pulling his leg to the center. But surgeon has said he will be able to relearn to walk with the use of a knee brace to keep it from buckling. The plastic surgeon is now reconstructing his leg due to the significant work that was done. Dom is doing well and we are waiting to go back after he wakes up from anesthesia. Thank you all for your prayers, it is definitely sustaining us.

Surgery Day

Right before Dom went back.  He was ready to get the show on the road! Today is surgery day and Dom is ready. He understands it will be a long recovery but willing to endure to rid his body of the cancer and hopefully pain in his leg. I just wanted give an explanation for those that don't know about the surgery. The surgery will be long due to complexity. Since neurofibromas develop out of the nerves, they need to remove the nerve to get clear margins. Dom's is on the femoral nerve, so they will be removing the femoral nerve as well. In addition, the surgeon is going to remove another tumor that has been questionable that is on the femoral nerve as well. Finally, he will attempt to remove as much of another plexiform neurofibroma, that is on his inner thigh, without removing that nerve to hopefully eliminate the pain he has been having.


Sunday, March 6, 2016

Waiting in the Storm

Last weekend my Aunt gave me this plate. My Uncle and her bought this when he was diagnosed with his cancer as a reminder through the journey. Even though he has gone home to Heaven, i remember what great examples they were during. This gift is in our foyer and a daily reminder though our journey. Uncle Jim would be so proud of his little buddy!


You are Good

Wow! God thank you for this morning! Great message, ending with Good Good Father and You are good, which made Dom's day. His leg was bothering him this morning before and he was concerned he couldn't stand. It didn't bother him during service and he danced during You are Good. Then, as we left, he asked Pastor to pray for him tomorrow. Pastor gathered some others, prayed over Dom and our family before we left. God knew just what we needed today. Enjoy Dom's new favorite song.


Friday, March 4, 2016

Praise! No Change

PRAISE! Just got official word that the MRI and PET came back as unchanged since last scans. Yes, we would have liked to have seen it shrink, but the fact that it didn't grow nor metastasize is definitely praise worthy. Also means he can stay on the trial. Now onto Monday to get that sucker out!

PET Scan Champ

Dom doing his PET like a champ.  We should know in a couple days the results.


Thursday, March 3, 2016

Nothing is impossible

Dom asked to listen to this song this morning. He then asked me to share on Dom Squad because "it helps me not be afraid of surgery because nothing is impossible"

Wednesday, March 2, 2016

Testing continues

Last two nights, Dom's leg has been in a lot of pain. Prayers for that to calm down, especially since he has a 2 hr MRI today that he must be still during. We should also find out tonight or in the morning, tomorrow, the results. It will tell us whether or not the tumor has grown.

Monday, February 29, 2016

Praise!

Praise, Dom has gotten through his first 9 weeks of targeted chemo without major side effects. He will be off of the Pazopanib for 3 weeks, since it can affect wound healing. First day being off of it and his BP has dropped to almost normal range.

Today, his oncologist was telling him what a great job he is doing with treatments. Dom then says "thank you. Daddy told me what could happen if the tumor grew". His oncologist asked, "what will happen?". Dom says, "I will have to get traditional chemo. So, Dr Pratilas, I pray to God every day that it hasn't grown. But if it does, I am going to rock the bald head". His oncologist said, "it is my hope it hasn't grown either, Dom". I seriously look at this child who is growing so much spiritually through this trial. He is wise beyond his years. His doctors are amazed at how he is doing and what he grasps. I thank God for Dom's attitude. It makes this journey doable as his mom.

Sunday, February 28, 2016

I hear you Lord

This was read during my devotion today.  Prefect timing as we prepare for surgery and what is to come in the future.


Saturday, February 27, 2016

The big 1-0

Dom wanted to spend the day with his friend at the National Aquarium and go to Toy r us to pick out the new season of Ninjago Lego sets.  The perfect day that ended with dinner at his favorite restaurant.



BP Check - Great

Dom #DOMinated the pediatrician's office this morning with a good blood pressure. Great birthday gift! Now home to begin our day of birthday celebrations.