“I have set before you life and death, blessing and cursing; therefore choose life, that both you and your descendants may live; that you may love the Lord your God, that you may obey His voice, and that you may cling to Him, for He is your life and the length of your days”
-Deuteronomy 30:19
Its been a few days since I’ve written…plenty has happened since my last post about the MRI. It seems the roller coaster just keeps going…um, can someone stop this ride? Please?
There was a big meeting yesterday to discuss Nitalia’s condition and her future treatment. There we were waiting for the neuro-oncologists and neurologists to come to us with some life altering recommendations. What arrived were more uncertain suggestions that come with additional risks. Don’t get me wrong, we know there is zero malice in their suggestions. They love Nitalia and want to cure her, they just don’t know how. So today we start a new “test” drug, in addition to all the others she is on.
The fact is nothing in life is black and white. Most people get through life like a feather through the breeze, content with just floating by. But for some, life picks you up and gives you a Piledriver! You can’t make arrangements, map, organize, outline, or prepare for it. The rain just comes…and it seems you cant get dry. All of the sudden you are a stranger in your own life, counting blessings that you wished you never needed. Life as we know it is a just a facade…period. I am not being bitter, nor am I trying to steal anyone’s hope. The fact is: the presumption that we “have life under control” is just a distorted, misshapen, knock kneed deception we create in our minds (ok, that sounds bitter, sorry). I had never really thought much about the great mysteries of life. I guess I figured that whoever decided they were mysteries must have known what they were talking about…now I ponder them by the minute.
Yesterday our lead doctor said to us: “The more we know, the less we understand“. She was speaking to the fact that the more they explore the human brain and its functions, the more they realize they know little of its abounding depth. Sue always tells them: “Only the One who created it, understands it“, and I think shes right. It seems to me the more intelligent you believe you are the further from wisdom you get. Wisdom comes from God, intelligence comes from books. All this time I have been trying to figure out how to beat this evil opposer in our daughter by immersing myself in scientific facts. Those weapons do not carry weight in this battle. It has taken me almost two years to understand that this is a battle beyond even the smartest scientist, doctor, surgeon, or dad. God is the ONLY way to win, and the bible is the “how to” manual. We just have to let go of what we think we know…place her in God’s hands and pray for His will. We know deep in our souls His will is to heal her.
Please Father have Mercy…
Sending all our love…
The Love Of Sisters!
It’s midnight here and we just got settled back in our room…So Im gonna keep this one brief. Nitalia continues to fight like a Gladiator beating back the enemy with each breath. We are so very proud of our girl! Sue and I continue to pray and believe that her day of miracle is right around the corner.
Tonight Nitalia had another MRI…this one in conjunction with the protocol trial she is on. Sue went into the room with her (as she always does), the girls and I sat in the waiting area.
Now we pray and wait for the news of clean scans…
We speak this blessing and believe that this is Gods will…He wants all of his children to be well. Jesus tells us it is “the thief” who comes to steal our health. Jesus says: “I come that you might have life, and that you might have it more abundantly” (John 10:10).
As usual she blew everyone away…All the woman down there in MRI know Nitalia, a sea of purple bracelets can be seen as the nurses stream by. They even have her bracelet taped to the wall in the MRI room!!! She touches the heart of EVERYONE she meets! I cant even explain how her love just spreads through the hospital. Just think about this: Nitalia has not spoken to anyone in 22 days, yet EVERYONE in this hospital knows her! Just wait until she starts talking!
She continues to respond to the Dr.’s, squeezing their hands and wiggling her toes. She actually waved goodbye to Aviona and Isabella tonight! It is a breathtaking event to watch her sisters climb up into that bed and hug her, telling her “Nitalia, it’s a good day to open your eyes!“. My heart just falls apart…
We have a good friend here that is surely sent by God to minister to us. David comes up and prays with us often. His prayers are beautiful, deep, and honest. I respect his knowledge of The Word and the humble view of his perspective. I had brought up the question “why this is happening to us?” the other day and he directed me to the Book of Job. So I read it and here is what I learned:
The Lords Sovereign purposes are much more profound then our tiny human understanding.
While we are on this earth we will never understand the “why?”, but we will not blame nor will we rebuke our Lord and Savior for this trial. What we will do is call his name, ask for his blessing, and believe that he is right here with Nitalia. We refuse to allow “the thief” to steal from our family!
(throw your hands up in the air) All Glory Is Yours Lord! Hallelujah!!
So much for being brief:)
Sending all our love…
UPDATE: We got great news this morning…The scans showed “stable disease”!!! This is a HUGE blessing. Now that it is in check, we need to hit it hard and beat it back to where it came from! Thank You Lord!! Please, Please, Please keep up the prayers. Praise God!!!
“For the word of God is quick, and powerful, and sharper than any twoedged sword, piercing even to the dividing asunder of soul and spirit, and of the joints and marrow, and is a discerner of the thoughts and intents of the heart.”
-Hebrews 4:12
Watching and waiting, praying and believing. She will just stand up and praise God for the Miracle He has placed upon her. All greatness comes direct from God… There is no greater power then His, there is no stronger army then His army of Heavenly Angels. Over the last year and a half we have watched a little girl become a gladiator. She is a GLADIATOR by its very definition:
glad·i·a·tor:
* a person, often a slave or captive, who was armed with a sword or other weapon and compelled to fight a battle in front of an audience.
She is fighting an epic battle in front of the world. Instead of Sword & Sandals, her weapons are God & Love. Together with all of us watching, she steps into the Colosseum and shows us all what it means to truly be great. We all applaud her courage and strength. If we could we would throw roses at her feet as they did in Roman times for the victorious gladiator. Sue and I know that her every breath is a testament to her faith. Nitalia REFUSES to allow her enemy to overtake her. We see it in every breath, every hand squeeze, and every low whisper that escapes her mouth. She continues to fight.
Last night her heart rate and respiratory began to steadily rise. Sue climbed into bed with her and began to whisper prayers into her ear. Holding her hand and filling her with warmth and love as only a mother can, we began to see her vital signs come down into the safe range. All of the sudden Nitalia started murmuring to Sue. Oh My…Thank you Jesus! Sue started murmuring back to her and that started a conversation that lasted all night. What they were saying, Ill never know…but I do believe I heard a “I Love Daddy the Most” in there somewhere! LOL!!!
Anyhow, She continued to speak in that low murmur, giggling and laughing at Sues silliness. She was moving her arms and legs, trying to get comfortable. When the Dr. came in Nitalia performed like she was on stage! She whispered words, followed the Dr. directions and even laughed for her. The Dr. said she is a DIVA today! We are so proud of her!
God is with our gladiator all the way…WE WILL WALK WITH HER AS SHE EXITS HER COLOSSEUM, AND WALKS THROUGH THE GATE OF LIFE!
** The Gate of Life – East Exit: The eastern exit gate of the Roman colosseum. It had direct access to the arena which was entered via the gate known as the Gate of Life (Porta Sanavivaria) for the procession of gladiators who paraded before the Emperor and the spectators prior to the beginning of the “games” and exited after a successful combat.
"Standing in the Colosseum, 2009 Rome, Italy"
Sending all our love…
“Do not put your faith in what statistics say until you have carefully considered what they do not say.”
-William W. Watt
So here we are…day 16. Sixteen days without hearing her voice. I took a video of Nitalia on my phone the day before this all started, and now I find myself sitting alone watching her tell me she “loves me more then words can say” and blowing me a kiss. Its just a 10 second video…but it means the world to me. I must have watched it a thousand times. I know she is going to wake up. I hear God telling me to believe. Sue and I sit by her bedside just looking at her beautiful face. The hours pass quickly in here. I keep telling Sue this place is like a casino, you can never tell what time it is. Its gotten so bad that they know my 2 AM fry run at the 24 hour McDonalds! When we do sleep, its a comical sight. There is a small (that’s an understatement) love seat/bench in the room. Sue and I curl up on it and grab some shut eye…I call it our marathon spooning sessions! The nurse’s crack up when they walk in the room and see us on there. They keep telling us to go home and get some sleep, but we wont walk outta here until Nitalia walks out with us! Last night Nitalia had an episode. Our hearts sank as the Dr’s came in and gave her another dose of medication to calm her mind. Crazy thing is she had calmed down even before the meds, and her heart and respiratory rate looked the best it had in weeks. The rest of the night (after that episode) was uneventful (thank you Lord). Today has been good. We have a friend here (Cheryl-Ann), she is one of Nitalia’s Nurse Aids. She comes in every morning and gives Nitalia a bath, makes her bed and gets her ready for her day. She sings and talks to Nitalia while she gets her ready. This morning she said to Nitalia, “How you doin today girl?”, and Nitalia answered her with a “GOOD”!!!!! Sue FREAKED!!!!! Of course, she would not mutter a single word to the Dr’s when they came to see her. But we know that she CAN say things when she wants to. So now we wait… with every little sound or movement, Sue and I jump up to see if she has come back to us…Hurry, We miss you!
“The Lord seems to constantly use waiting as a tool for bringing us the very best of HIS Gifts”
-At His Feet
Keep up the prayers! The good Lord hears us.
Sending all our love….
“I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.”
- Mother Teresa
Sometimes I feel like we are going through some strange cosmic hiccup, some sort of fold in reality. Steven Hawkins speaks of bends in time and space, an alternate self that exists…is this one? Can this really be happening?
I have Faith, Hope and Love. They are dear friends I lean on often. God has talked me off the ledge every time, every time I feel like i just don’t have the strength to take on another day, minute, second. He allows me to imagine the beauty of what could be, if only I stay in Faith, continue to grasp onto Hope, and never doubt his Love for us. He grants me the ability to understand the blessing of my daughter still being here with us. Does this suck in every way possible? Do I wish every day that I would just wake up from this nightmare? YES! But, in the darkness of this strange and inconceivable evil, we need to find the blessing. Its always there, we just need to open our hearts and minds.
Last night I dreamt of a woman handing out violets as friends, family, and nurses left our hospital room. They were all so happy to get this flower. I woke up and told Sue. It was so real. Crazy? No, I think it is Jesus letting me know that even in this barren oncology unit, a beautiful flower can be given. A flower that can ignite a smile in its receiver. What does the flower symbolize in my dream? I think that is for each of us to discern. I know what it speaks in my heart.
I am writing this just to say to the others that are sharing our journey, or may be starting a journey of their own….God has a plan…I know. Stay in Faith, so you may be strong enough to accept his flower when he hands it to you.
Sending all our love…
This last week has been endless meetings with teams of doctors. 24/7, they stream in and out of our “universe in a room“. We believe that ALL the doctors here at CHOP have Nitalia’s best interest in their hearts…BUT, sometimes parents have to use what people call their 6th sense (Gods Hand). If you are open to it, you will feel it in your gut like a 600 lb McDonald’s hamburger. We always go with our “gut feelings”…we know that it is God steering us.
Nitalia has been on some strong medications to try and get seizures under control. She has been hooked up to a 24 hour video EEG machine for a week. The neuro team was convinced that the activity on the EEG was seizures. They snowed her with anti-seizure drugs and ordered emergency CT scans based on the EEG results. Our gut said otherwise. We could not understand how everything that was showing on the EEG machine could have been seizure activity, but the team insisted that it was. Up to 10 seizures an hour! Sue and I were scared to death!
We were having a hard time accepting all this because she looked good, lying still in the bed showing no jerky motions or visible seizure activity. Their position was entirely based on that EEG machine and the person interpreting the wave patterns. Our gut feeling was telling us we needed time to let Nitalia come out of this drug induced stupor. We felt she was not having 10 seizures an hour…maybe the EEG was showing Nitalia just trying to wake up, or trying to scream for us to stop all this! We took a deep breath and requested that the team give us 24 hours to see what happens. The Dr.s all said that at the end of the day, it was our decision.
The sky is falling..oh wait, no it’s not.
Less then 2 hours later, the neuro team came back in to inform us that the lead EEG specialist “re-examined” the EEG, and now thinks that the activity may not be seizures at all!?! WAIT ONE SECOND, did we miss something? For a week they have been telling us Nitalia had been having dangerous seizure activity. Now they have re-considered their findings? Much to our disbelief, they moved us out of PICU a few hours later…WOW!?!
This just shows “Who” is in charge:)
We have the utmost faith in our Neuro-Oncologist here at CHOP. Dr. Lange is a superb Dr. with 40 years of neuro-oncology experience. We looked to her for answers to this bizarre situation. She said she will get to the bottom of this, it makes absolutely no sense. We believe it is ALL GOD working his miracle.
“For assuredly, I say to you, if you have faith as a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.”
So the good news is that we are out of PICU and in a regular room. Now we wait for Nitalia to open her eyes. We rejoice in His mercy, and continue to believe in his Divine Goodness!
Nitalia will get up and walk outta here, you just watch! (ain’t that right Leroy)
Tuesday night was a restless one for Nitalia. She did not sleep for five minutes. The entire night was spent trying to ease her mind. At about 9:30AM, she began to have a strong seizure. Words cannot describe the horror of watching as our precious girl lost all control. We waited the suggested amount of time (as we were taught at CHOP the week prior) and called the Dr.’s as Nitalia continued to seize. Sue and I administered the medicine to stop the seizure, it only worked for a few minutes. We called 911.
As four men stormed the upstairs bedroom attending to Nitalia, Sue and I gathered our minds and our medical records. The decision was made to take her directly to CHOP, instead of the local hospital…Thank You to those men that decided to use their “better” judgment and took us directly to the hospital she needed to get to. Nitalia began to seize again and again as the emergency team worked to get her stabilized. Sue and I were holding strong to “Hope” as our hearts were being smashed with every convulsion.
So here we are back in PICU…a few days of freedom and we are back in the thick of battle. cancer does not stop to take a break, nor does it respect the hopes and dreams of the lives it affects…it just keeps grasping for more. It’s an ugly, greedy monster, evil in the form of a cell.
Sue and I prayed last night (as we do every night) that the Lord would send down all of His Angels to be posted by Nitalia’s bedside. We called upon Michael the Archangel to post up in our room, and we asked that Jesus himself would make a visit to our room to make our daughter whole again. We hold tight to the truth that the Lord will take us through this Valley.
Better days are ahead…I just know it.
Please keep the heavens flowing with prayers for Nitalia…
“Fear is a reaction. Courage is a decision.”
– Sir Winston Churchill
Sending All Our Love!
We have been out of the hospital for a a few days now. The weekend was uneventful (thank God), we rested the entire time. Nitalia had her second round of treatment Yesterday (Tuesday)…She handled it well. She even ate during the treatment and watched her favorite show, sunny with a chance. She never ceases to amaze us! We have road ahead to deal with, but we will do it by faith, not by sight. We continue to lean on Gods word to get us through the hard times.
Over the last year and a half this trial has taken us all over the map…and emotionally drained our entire family. If not for the faith of my wife, Sue, I don’t think we could have made it this far. She continues to be our “Rock”.
We continue to search for the way home. The life we had seems to have left us, and this new reality is in it’s place. I can only compare it to being in a war zone. I tell Sue all the time, we are in a war, and we have to let go of “normal” and embrace the mindset of a soldier. “For the weapons of our warfare are not carnal, but mighty through God to the pulling down of strongholds; Casting down imaginations, and every high thing that exalteth itself against the knowledge of God, and bringing into captivity every thought to the obedience of Christ.” (Second Corinthians 10:4,5)
As hard as it is to put thoughts of the world behind, it is what the Lord asks of us. When the leper came to Christ he asked “Lord, if You are willing, You can make me clean.” This is a very hard thing to do…put the healing in Gods hands, His will to be done. Not ours…we can only ask and believe in His Greatness and Mercy. We don’t know the why’s in this trial…What we do know that through this, Nitalia has brought many people together in front of God. Through this, many have agreed in prayer… Through this many have been drawn closer to God… Through this, we have all become one.
We have all become a member of Nitalia’s army in God. Thank you for continuing to stand with us, strong and unshakable, to defeat our enemy.
“Be strong in the Lords power. Put on His armor to fight for his healing…Put on the whole armor of God, that you may be be able to stand against the wiles of the devil.” (Ephesians 6:10-13)
Sending you all our love…
Nitalia took her first treatment at 11AM and then she had to have labs drawn every 2 hours until 8PM to check the saturation of the trial drug. She handled it perfectly! We know that Jesus is with her, and the medicine that was placed into her yesterday was his. She actually slept through the session! She is so unbelievable!!!
So you could imagine our surprise when the oncology team came in and told us that Nitalia is doing so well and gaining ground so quickly that they feel it would be ok for her to go home!!!! Nitalia had a smile from ear to ear…Sue and I were so happy that we did a jig around the hospital room. If anyone would have seen us, they for sure would have sent us to the funny farm! We packed up (I have no clue how we got so much stuff in this little room) and headed home at 10 PM! We arrived back at Sue’s moms house at around 11PM to hugs and kisses from the family. Once we settled in we went out cold like we had been punched by Mike Tyson. The sleep went waaaaay into the afternoon (check out the sleepers).
Well today was a day of rest, and I think the rest of the weekend will probably follow suit. We are all exhausted.
Please keep up the prayers. Nitalia will be getting her treatments every Monday and Thursday at CHOP, and will be in therapy the rest of the weekdays. We need to get our second wind…we are in the 5th round of a 12 round fight…and we plan to come out champions! (cue “we are the champions”, Queen)
“Champions know that success is inevitable; that there is no such thing as failure, only feedback. They know that the best way to forecast the future is to create it. (Michael J. Gelb)”
“I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)”
Sending each and every one of you our love and hugs!
Hi All,
Today was a good day.
It started with Nitalia (and Sue) sleeping until 10AM! She was beat from the surgery. She was NPO all day yesterday, so she woke up with the appetite of a 450lb lineman. She ate pancakes, french toast sticks, scrambled eggs with cheese, and cream of wheat! She washed that all down with a cranberry juice and a pumpkin spice muffin! It was hilarious! Sue and I just watched as she devoured this breakfast of champions!
The day continued with a bath and a quick escape from the room…we hot footed it over to the play/craft area (Nitalia wanted to paint). On the elevator over to that area we met up with two Navy officers dressed in their Navy best. One of the officers said to the other, “We got us a fighter here”! “This one is a real soldier!”
Nitalia smiled and I took the purple bracelet off of my wrist and gave it to him, asking him to keep Nitalia in his Prayers. He responded with a “Yes Sir”…Then he reached into his pocket and proceeded to kneel down next to Nitalia, handing her a coin about the size of a half dollar. He said: “Nitalia, this is my Chief Petty Officer Coin. This was given to me when I became Chief Petty Officer. Its been in my pocket since 2005, and I want you to have it. Your a soldier, and your gonna be ok…In fact, I’ll be at your wedding!”
It took all of me to hold back the tears…Sue lost it. Tears were just streaming down her face. What a gesture of love. This was such a special moment.
Say hello to two more of Nitalia’ angels, Chief Petty Officer Garrett Milo and Chief Petty Officer Walter L. Evens Jr.
God Bless You Both! What you gave my daughter today was much more then a Chief’s coin, You gave her a boost of courage from one solider to another! I thank you from the bottom of my heart.
Nitalia was so much stronger today. She walked with some help from PT, She spoke with some help from Speech and she ate waterice with some help from Rita’s (Thanks Aunt Meesi). There are so many stories to tell about our days here at CHOP. and I plan to post them all on this site. The Dr’s, Nurse’s, and Staff are all incredibly caring. They all know our girl by name. It’s funny, we will be going down a hallway and a nurse will say “Hi Nitalia”. Even though we never met her. A look to her wrist revels a purple bracelet! They are all over the hospital, from Dr’s to Janitors…They all are sporting her bracelet which says:
“TRUST IN JESUS, THERE IS NO DECEIT IN HIM”
God is here with us, we can just feel Him. Praise The LORD!!!!