Sorry, we have not had as many updates lately. Things are slowing down to a regular pace now so news isn't as readily available. We will continue to update as new information comes in.
Here is the latest from Dana.
"We have been playing a little bit of a waiting game lately. Each time Natalie receives chemo, the treatment makes her blood counts go down (as it is suppose to) but then, we must wait for the counts to come back up for her next treatment. She was suppose to receive chemo this last Monday but her counts were low, so we moved it to Wednesday and still, low so now we will have her blood count done again Thursday to see if we can go in on Friday. We are told that this is common, but it's a bummer to see Natalie having to get her port accessed soooo often. She really does not like it.
We are finally receiving the carpet that we are replacing this Friday. It will be nice to get our surroundings back in some order and for Natalie and Nicole to be able to play freely on the floor with their toys.
Overall, Natalie is still happy and playful. Nicole is growing fast, soon I think she will pass up Dominick!"
nat update
In chemotherapy when the drugs are given there is an absolute low point called the Nadir. This low point represents when most of the individual components of the blood are low. Natalie for the next 2 weeks is at that low point because of a heavy drug called Cytarabein. If you remember this is the drug that Dana and I have had to administer through her central line (a chest tube used to deliver non oral meds and for drawing blood labs) for the last few weeks. Being at this low point we need to be especially careful around germs, fungi and bacteria. This is the point of chemotherapy. Since there is no one drug that will only kill Leukemia cells in her blood we have to use drugs that will kill most all of the cells, then let them regenerate and do it again.
Though this is a common procedure for cancer patients, Dana and I are a bit nervous because cold and flu season is now here. Natalie is still sleeping a lot. Just yesterday she took a 5+ hr nap. Every Monday we have outpatient hospital appointments at Stanford. This week and last we've had to make an additional special trip to get transfused (get blood) because here levels (AKA: Counts) have been so low.
I would like to encourage everyone to consider giving blood. I always thought it was for emergency surgeries but it's not. In our case it is a part of our normal everyday life. Since this is cancer awareness month consider helping someone in need. The Red Cross is a great organization to find an area near you visit www.givelife.org.
From DOM
Today we had a wonderful surprise from John L. Coble Elementary School's 6th grade class in Georgia. They each sent letters with little written prayers written directly to Natalie. It was sweet gesture to see each card, with a picture of a pair of praying hands, accompanied by their personal note. We've decided to include some of their words in our blog entry below. Even though we could not list every prayer, we thank you boys and girls for your love and prayers. Here are some examples:
"Dear Natalie I do not know who you are but I have heard a lot about you. I hope you get better. Dear Lord help she's about 6-months, help her. - Amen"
"Natalie, God is still with you. Parents, God is with her He has a plan. - Simon"
"Natalie, I want you to know about God. God is able to heal you. I know how bad you feel. We pray for you. - Love Cameron'
'P.S. Here is what you need to do. Pray, Read the Bible and love Him."
"Dear Natalie I am praying for you. - Love Olivia"
"Dear Natalie, you're small but God is Big I'm praying for you - Peyton''
P.S. I have been to Tahoe a lot!"
"Dear Natalie, my name is the same. I hope you get better. God loves you and we do to. - Love Natalie"
We would like to thank the John L. Coble Elementary school sixth grade class for your kind words. You have encouraged us and brought a beam of sunshine into our lives today.
We pray that God blesses you for your kind thoughts and words. - The Orlando's
With the announcement of my daughter (Natalie Orlando's) Leukemia diagnosis, 51 days ago my life took a turn unlike any I could ever imagine. One day I was working, doing my usual things and within a few minutes, I would drive away not knowing if I'd ever return. Nearly everything I had thought was important had quickly atrophied. I had one focus -- securing of the best medical care for my little girl.
To be honest, the first weeks I felt so broken, my heart was as heavy as it has ever been in my whole life. Sometimes not even able to stand because of the gravity of the situation. I became the advocate for my daughter who couldn't speak because she was so young. I immersed myself into her disease so I could fight for her every benefit. Feeling the stretch and taxation in my marriage, family and my faith, I regularly received bad news only to receive worse and worse news after that. BUT out of all of it I knew (and still know) God is good He desires the best for my family. This even has scared me but it has given me even more reason to hunker down in his love. God is my rock and my shield. He has the keys to life and death and even after death we are still secure in His grip. I know that this life will bring trouble but the LORD will strengthen us and equip us to do His work where ever it leads.
I am witting out of gratitude for your incredible prayers and gifts you've showered us. Your prayers have warded off the evil ones plans and have lifted us up when we could hardly holds ourselves together. Your presence has truly made us feel like we are not alone even when I felt like I had the weight of the deepest ocean on my shoulders. The incredible out pour of love and support through this initial stage of Natalie's treatment has truly allowed us to better bear this burden.
We have seen so much support there were actual times where I've felt guilty that so many people have supported us when other families hadn't even had a visitor in six weeks. The monetary support, the encouraging letters, phone calls, emails and the visitors have not simply encouraged us but have spoken to others families and hospital staff too. The prayers have extinguished the fiery arrows of the evil one and have fought back so many undesirables. Your support has given us courage to face our darkest fears head on and has given us the strength to press on with power, persistence and endurance.
At best we have 788 days left of chemotherapy so our fight is truly just beginning, but I will always be indebted to all of you who've lit the walking path for our darkest hour. You are truly the hands and feet of God.
With much love,
Dominick, Dana, Natalie, Nicole and Daisy the dog too
Hello all,
To save us travel time the doctors have agreed to train us how to give some of the more frequent heavy chemo meds directly at home. Monday's typically start with a trip to Sanford for Natalie's weekly Spinal Tap. Medicines are injected (intrathecally) into her spine, and the fluid evaluated. This 15 minute procedure takes about 8hrs from leaving to returning home. By the time we leave the hospital Natalie's Port is "Accessed." This means there's a needle and tube present in her chest port for the delivery of medicines. Each week we have been trained at regular intervals to administer a mind-numbing number of medicines, one of which though her chest port. If you try to imagine, it's a fairly odd to suit up in protective gear and inject a bio hazardous substance into human being, let alone your daughter. But still you press on because as a parent you know it's her best chance at beating this disease.
Natalie is such a trooper. Don't get us wrong, she really doesn't like her treatments, but she handles them with courage; honestly better than Dana or I would. I am so proud of her. Her courage and strength is monumentally amazing to me. I continually grow more fond of her daily. Though this time has been immeasurably tough, I've truly treasured spending countless hours by her side. It has been such a treat to get to know her more completely (than I think I would have normally). I will always treasure all of the little moments like our little gibberish talks, having her fall asleep in my arms, and holding her hand at the bed side nearly all night.
Sometimes I feel like she is telling me that everything will be alright. I don't know how she does it but she has managed to touch so many lives with her amazing (I don't even know what you call it) it's like an aura. Something about her little spirit, people gravitate to her. I really feel she is being used by God in so many ways. It is truly amazing how someone so young can teach so much.
Your prayers are hard at work,
The Orlando's