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

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

We are working hard to get the house really clean for Natalie. Since Natalie is susceptible to mold and mildew we are repainting and re-carpeting the house. We are also installing two HEPA filters to recycle the air. Doctors say all of our work is a great precautionary measure to keep emergency hospital visits to a minimum, however the true risk is the bacteria already present in Natalie's body.

Doctors say we all have bacteria in our bodies but we don't get sick because of our strong immune systems. It is somewhat of a counter intuitive thought but to kill the Leukemia we have to kill all types of cells one of which protects against sickness. So to work to cure her we need to compromise here immune defense...

Since the test results returned that Natalie is now in the higher risk group we are still asking everyone to pray that she handles the drugs. We are entering a whole new round of intense Chemo. Many of these new drugs cause nausea, fevers (requiring hospitalization) and other things like extreme need for rest. Dana and I thank you for your continued uplifting prayer. And as we progress we will work to update the blog 1x-2x per week as things develop.

Don't forget this is cancer awareness month, we are not alone. There are thousands upon thousands of people suffering from this disease all over this country. Maybe this month we can turn our thoughts towards the sufferers and their families as the holidays approach. Just a thought.

We love you all,

The Orlando's

The Orlandos will be returning to Stanford this weekend for Natalie's next round of treatment. This will be hopefully only a weekend stay.

Since Natalie is going to have a new treatment schedule, please pray for the potential affects of the new medications. Also please pray for Natalie to respond to this medication.

Update from Dominick on Saturday:

Our first outpatient (out of the hospital) meeting was a bit hard to be mentally present for. The results of her final bone marrow count are back and unfortunately Natalie had some Leukemia cells still present, so she did not pass. This bone marrow scan "MRD SCAN" is a new tool on the cancer scene and is accurate within .001%. Previously the test only consisted of scanning for Leukemia cells with the naked eye. Natalie has so few cancer cells that she passed this "naked eye" test but then failed the MRD Scan.

Therefore, Natalie has been placed in the High-Risk/Slow Responder category even though she was considered an Early Responder after the previous count. However, because she has Down Syndrome and because of some extremely favorable research at St. Jude Children's Hospital, we all feel that this treatment plan will be significantly better for Natalie.

To expand a bit further, Natalie is participating in a national research study. The study has specific treatment plans for each individual depending on many factors (one being the MRD Scan). The Low and Medium-Risk categories each have about 4 treatments plans. What happens is a computer randomly picks one of those plans depending on the category that the patient is in, then they evaluate the data to see if the treatment works better or worse for the patient. If Natalie passed the MRD scan the computer could have chosen one of the less aggressive treatment plans for her. Now, considering some of her initial numbers and some favorable research at St. Jude Children's Hospital, all of us feel a more aggressive treatment plan is best though this means more side effects and possibly longer chemo treatments. We are trusting God with this outcome and have found some comfort in knowing that the most is being done for her and we will never have to wonder if we should have done more.

Even still, I felt overwhelmed yesterday with this prognosis. I immediately felt nauseous and almost passed out right in front of the doctors (not usual for me at all). Both Dana and I prayed last night for about an hour or so. I want you to know, it felt so good to simply lay in his lap and ask for His will not ours. We specifically asked God to sustain us for this coming year and to give us the spiritual strength of warriors. This is a hard time but we know that this is only a season in the big picture.

Thanks for your prayers of strength.
We love you all so very much!
The Orlando's

Everyone, Now that we are home, Dana and I wanted to write a note to express our overflowing appreciation we feel toward everyone who has been faithful during our recent battle with Leukemia. Words can't begin to mirror the gratitude we've felt over the last 36 days. Each of you has given of yourself to our struggle. We have been humbled by your love and incredible generosity.

Your thoughts and prayers has truly been the binding agent that's sustained us during this time. Though this battle is far from over, we beg you to keep praying for the welfare of our little girl. To date her treatment has thrown us a few curves, but let me encourage you that God is listening to your prayers! Dana and I know whatever the outcome God has secured the future of our family.

Your support has allowed us to face this reality not as two but as many -- for that we are exceedingly indebted. In the midst of this event know God is working. He has allowed us to share some of the darkest hours with a few other parents.

We're reminded that, believer or not, God has breathed life into some incredible people. Though this reality is not a desirable place to be, there is some great work to be done. And though it might sound odd we're thankful God has seen us fit to wrestle through this terrible disease.

From the bottom of our hearts we sincerely thank you for all of you're continued prayer and support. The strength we've seen exhibited through your love and prayer has truly allowed us to see daylight from the depths.

We love you all so very much!

Today is Day 29 of Natalie's treatment and the Orlando's stay at Stanford. It is hard to believe it has been a month now.

**Dom texted me and told me Natalie is having a surgical procedure today. He also indicated they expect to go home tonight!

Nothing yet on tests.

Update: 8:35pm

The Orlandos are home! They went home tonight for the first time in a month.

Natalie had a port placed today surgically so she can receive mediation directly. It resides under her skin and is sealed so she can take baths or swim. They have a follow up appointment this coming Friday, but for now things are as good as could be expected.

The results of the tests for her Leukemia cell levels will not come back for a week, so we will keep you posted as to the progress.

Dom's voice on the phone sounded alive and lifted.

They are so thankful for everyone's prayers and encouragement and financial gifts.

This is a great milestone to go home!

Natalie Orlando

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