Save the drama

Life has been so fast going lately. We have been in and of hospitals for the last week or so. The first couple of times Nick was put back in there after Chemo he bounced back within a day now its taking days and days. Lord please protect our son during this journey. I know that he is very scared about death and I just want him to be comfortable in his skin again as a young man. Give our family the strength to keep this family together and happy. Lord give me all tools we need to drive this vehicle.

Thinker

We are amazed to know that our son Nicholas is one of a kind strong, smart and healthy other than the cancer that resides in his bones for the time being . I cannot wait until the day takes over all the bad cells in his body and he can walk cancer free. I know with the love and tender care of God our lives will meet at a much grater path in the future where we'll all chain up and get ready for another ice road to travel. I love my son so much and to see him feel this ways kills me all the time. Overall, I know the outcome could suck but I never want to believe it. He's deserves better than that. God bless out family and loved ones.

Chemotheraphy Kicked my &%@# this week!

For the most part Nicholas is a very honest, open and loving child. He typically never repeats a curse word or speaks without putting thought into what he is going to say. He is a very big free spirit and this week we got to witness what happens when you upset him and piss him off. At Sunrise when they had Nick all rolled out on Morphine and Haldol for people with serious mental issues. I am not sure if they even knew what they were doing there as far as treatment. You see Nick was accidentally scratching off his dressing in the middle of the night while trying to sleep. The nurse in the day time tried to say that he was trying to de install his port for his IV so she would  not get into trouble for strapping his butt to the bed.

After it was all said and done Nicholas was constrained to bed for over 24 hrs. for cussing and kicking a little. Nurses should be trained to take such abuse. It's a shame how as soon as they say a kid act up or cuss they think he is a disobedient son of a bitch. Well I have got one thing for crazy ass people that want to keep my son high on drugs like haldol. That is for seriously crazy people. We will never step foot into that hospital again nor will I ever speak to his first Oncologist about anything ever again having to pertain to my son. We will not put his adorable, filthy mouth little butt in a hospital where the people disrespect us and what we are going through. My son will never step foot into that hospital again.

The best thing that has happened to us this week is that Nicholas got to come home yesterday. Candice with the help of a couple great people took his room and made it more warm and inviting. We picked up a little 23 inch 1080P tube for his room and it has made a difference. He is in his room where he belongs and with 1 scoop of strawberry ice cream down the hatch and some bottled water. Nicholas willingly went to sleep at a decent time to prepare for his day of Halloween. Now mind you his favorite day of the year is tomorrow and I am just so grateful he gets to be a normal little child and run free with friends.

California Dreaming

Ever since Nicholas has been home from the LA children’s hospital he’s been admitted to the hospital. We are doing what we can to make it easy for him but it’s taking its toll on all of us. The other night he was so sick of just being there and bored that he ripped his IV tubing out of his chest and saw some blood come out. He was scared and just so tired of being in that room with his mother. Thank god for the other children in there though because it has given him a chance to relate. Last night the two had a play time they chose to play the Wii and DS together. Nicholas came back into his room where I was sitting stated “dad isn’t time for you to go home?” I was a little upset he would be so anxious to get rid of me and may have taken it hard. At times its just so hard to know what he may be going through. It’s a challenge everyday to stay calm and patient. Everyone has their own heart strings attached emotionally and mentally. I miss my family so much night after night they rest in the hospital and it is so uncomfortable and foreign to us still to this day. I pray that today his blood reading is healthier so he can come home today. We have a bike run in honor of Nicholas to attend tomorrow and I am not so sure if he will even make it. Monday I will be hopping on the plane to meet up with them at the airport in California, from there we will be heading to the Ronald McDonald house while his bone marrow extraction will be done. God bless this young and vibrant child with all your heart and love.

Roller Coaster Ride

   It's been a real roller coaster ride this last week. Nicholas had his first round of chemotherapy and ended up right back in the hospital due to his blood count being low. His strong immune system recovered within  a day without the blood transfusion that doctors informed us that he would have to have. Our lives have drastically changed in so many ways. We now realize how hard this is going to be. One fever can send you into ICU at any time. Candice was very quick at recognizing Nick's fever and getting him the hospital in time. Thank God for her instincts cause it was nearly 4 in the morning and I did not feel his head.

   I am very sick today and have not even been able to hug Nicholas once. I hope that we can get all back to our routine here shortly. For those that have asked about Nicholas and how he is doing, he's technically in good spirits. He acted out a few times after he left ICU but I think it was just because of fear. As a family we will be exploring our avenues when it comes to counseling  very soon. We need to have a good solid base when battling with this disease.
 
  Our family would like to thank all the silent donations and people that have put forth the effort to help us during this tough time. We are all very happy to know that there are some really great people out there. Some way may never get a chance to meet. Thank you again.

Miracles do happen

Thursday morning around 4:00 A.M. Nicholas caught a fever that landed him back in the hospital. His blood count/good cells had deteriorated from his first round of chemotherapy. I was at work all day wondering what was going to happen to him. Shortly after I entered the hospital after work, I was told by his mother that he would be there until Monday. I was completely shocked with the news that he'd be there so long and at the same time I found out they wanted to do a blood transfusion to bring his cell count back up to nearly 200 hundred before he could go home. Trapped in my own state of fear I broke down and cried and begged God to make him well. I felt so hopeless and sad for him as he slept in a pool of sweat with a fever of 101 degrees. I went home that night as Candice decided she wanted to stay with him for the night. Friday morning I headed off to work with only one thing on my mind...Nick's health and scheduled blood transfusion. Noon time came quickly as I received a text message from Candice stating that Nick's blood count had skyrocketed to 600 in a little over 24 hours without the transfusion. I believe in miracles and I am sure that we just witnessed one recently in our lives. Thank God for everyone praying, pushing and pulling for a fast recovery so far everything is going as planned. 

Back in the Hospital

I was under the impression that Nicholas would stay free from any hospital beds this week. So far we have been told possibly he could leave on Monday. This is so hard and I am barely able to think let alone process what's going on. I have to keep strong cause the minute I give up cancer will win. God please bless my kids body and mind. I love you Nicholas Martin Miller.

Fountain of Longevity

Today we were able to venture on out. We chose the Mirage to visit the dolphin habitat and got to visit the Siegfried and Roy garden. Nicholas had a blast and even stated that it was the happiest day of his life! As we walked by the fountain of longevity I only found it appropriate to take the opportunity and snap a photo of him touching the fountain. Nicholas was very happy and did not tire or tucker easily. He is still eating very well and very energetic. By the way when we were talking to him about cancer he insisted to us that he was not sick. You try and prepare yourself mentally for the worst case scenario but how can with a child that is so willful and resilient? God bless his spirit and mindset. I am a very proud father.

September is National Childhood Cancer Awareness Month

September is National Childhood Cancer Awareness Month

day four chemo

Short entry tonight about the day. We had no transportation today for Nick's chemo treatment. His 84 year old grandmother ended up taking the public CAT bus to his treatment with him. I was a hot mess most of the morning. I have to really give it up to the two of them as they are both very strong and hard headed. I wish I could have been there for him today more so then the last two days. Nicholas was acting very lethargic this morning and I had my worries before I even stepped foot out of the house to head to work. Overall I just think that the more rest he gets towards the end of this hell week the better off he'll be when he has the next two weeks off of chemo. He has a busy weekend scheduled ahead of him. Two birthday parties to attend. I used to say oh no, not another birthday party to attend, now I am just hoping they will never end. Some of the things I used to complain about I tend not to anymore. I wish I would have learned this lesson much earlier in life. Nick is fast asleep in bed. God bless another day down.

   Today  was a lighter day. Nick got off to a good start. He was hydrated enough to not have to sit for a few hours just doing the saline drip. He was in very high spirits today as the infusion room was calm and dimly lit. The side effects are not showing yet but I am scared of when they will begin. There are so many of them and the worst involve red tears, swollen throat/sores, vomiting etc; the list goes on and on forever. Nick has been a trooper and knows what it takes to fight this, as a matter of fact the intern working with at the cancer center is up for his second tour of Iraq set to deploy on Christmas day. Nicholas knows that he is a hero and what it takes to survive. Thank you Sidney for all your hard work and dedication. We really appreciate you and the staff are all so kind to our family.

Today was much different for me. I felt quite out of place at the cancer center today. Truthfully I was a little overwhelmed by the babies in there. The girls were just so small and happy. It broke my heart to see so many children in pain at once. They were all hooked up receiving treatment similar as our son. I wonder what the days have in store for us. It has been barely tolerable this far. I tell you what though our attitude is going to have to stay positive. When one person gets down we all seem to start that down hill slide. For the most part Nick was in good spirits and was very restless the whole time. I pray that tomorrow will go much smoother. Stella is going to be bringing us some coffee and lots of love and ideas for our family tomorrow. Nick has stated that he is no longer scared but he is horrified. I hope that I have the strength and the courage to keep him up for this. Please God give me all the right words to encourage him to get well and grow old and have a family.

Today was our sons first day of chemotherapy. We are scared but finally happy that he can get the treatment he needs to live. All I could keep thinking about was that limp that he had and that the foot doctors were telling us that he would be fine. Months later and one day he cannot walk at all. I feel so hopeless in so many ways. I should have caught this disease sooner.

Neuroblastoma, is more common than most other cancers especially in children accept that it's usually early diagnosed in the infant and toddler stages. Our hope now is that Nick's chances at survival are greater than the 40 percent I keep reading on the web. I try to block out the pain and think one day at a time. I know soon God will lead the way to rest and recovery and a vacation which is way overdue. I want to thank everyone that has offered support and time. It takes a lot to commit to something this large in magnitude but with our support team we can beat this.