Last night was an emotional roller coaster. After laying the girls down for the night we soon discovered that Natalie was beginning to get a little warm. Within a small handful of hours we were only a degree away from having to go to the emergency room. A fever is a serious condition for anyone with Leukemia. They are a potential sign of something bigger - and they only seem to show up at night! I tell you there is no feeling like living a full day only to have to stay up the whole night dreading traveling to the "germ infested" emergency room. About 3am my dad got up to go to the restroom and I asked him to pray for Natalie. Wouldn't you believe (I am not exaggerating) that within 10 minutes any sign of a fever was gone!

I think sometimes my faith is so small. It is so easy to think about yourself in times of stress and trouble. But God was after something else. Perhaps He wanted my dad to know that his voice is heard. I don't know either way, but I am thankful that God wanted to use him in that way.

Even upon writing this, my feelings of stress are surfacing. It is in my experience that once Natalie gets a mild fever, it will come back for a few days following. Wouldn't you believe it that even after experiencing last night that I am beginning to get afraid of another crazy night again. I feel so stripped of myself when I am brought this low. I would ask for your prayers that we would be able to shoulder this load.

I was telling a good friend of mine today that this battle seems to be so much more spiritual that I would have expected. Sometimes, Dana or I don't have anything left to give and only to find out we still have a mountain climb. In a vacuum, fighting cancer seems pretty straight forward but it takes you to your limits, and beyond. Life ever-rushing demand can be brutally relentless. Your prayers are our sustaining bond. Both Dana and I are thankful for your intercessions. MUCH LOVE TO YOU ALL...


There are so many great things that have come from this season of our lives. Perhaps the highlight has been that lives have been changed. There is something about a hard illness that causes people to look hard into their lives. One example is my Father. He has been mad a God for many years. I wouldn't say he deny's Him but he finally made peace with God about a month ago.

My dad (pictured left) will grow in God's goodness in his own time and own pace. My dad has been hurt by church before and he has always said "you don't have to go to church to believe in God." He is right, 100% right. However, he has been struggling with anger towards God for a long time now, especially since Natalie (his granddaughter, my daughter) was diagnosed with Leukemia.

Well, the other day my friend and pastor Andy Lewis felt that God had told him to come over and chat with my dad. Both of us were able to spend some quality time with him out in his workshop. When it was time to leave Andy told my dad that the reason he came over was he felt God has been asking him to pray for one person these past few months. He said that God is reaching out to you and He is not done with you. Andy asked Dom (my dad) to carefully consider to be baptized. Well, he did but it took a whole 3 minutes of thought. His words were "I would like that a lot."

By the end of our conversation everything was set for a winter back yard baptism in the spa! Well I am happy to say that the ceremony was wonderful. And just look at the peace that is radiating from my dads eyes. I tell you, it was a sight to remember for the rest of my life.

It's been 37 years since he as left the church behind (or they left him, if you hear the real story). All of that is in the past and it's time to now pray that all of us can provide a safe place for my dad to be able to work thought those hurts. I also pray that his commitment to "follow Jesus all the days of his life" would become a living and breathing part of him. Praise God, He is good. He is the Faithful One!

DomSr Baptism WebAlbum

P.S. My dad invited his Neice to be baptized too, so it was a double baptism.

Just today a wonderful family who's affiliated with Jacobs Heart stopped buy to drop off some holiday gifts for us. It is such a nice feeling to know that others are thinking about you. Both Dana and I would like to send a special message of appreciation for everyone who's lent us your kindness this past season. Your kindness and goodness is a credit to you and your families.

This year we are thankful for many things. It is an added bonus knowing that there are still good people in the world -- and all of you reading this are among the finest we've met.

From our heart to yours we would like to extend to you our very best this holiday season.

With much love, The Orlando's


If you get a chance look into "Jacob's Heart" it is a great organization to get involved with. (http://jacobsheart.org/facts.php)



Well with much anticipation all was canceled the day before Natalie's procedure. This is the name of the game. The chemo knocks down her ANC (white cell count or immunity) then it rebounds to then deliver more chemo.

What's interesting about this scenario is that a week after her last chemo therapy her ANC did not drop. In fact it held steady and rather high (about 1500). Questioning this, I asked our doctors and they weren't concerned. Well if you can imagine our surprise the day before her treatment the doctor called with the results and her immunity was ZERO! So, everything was canceled. That hasn't happened since our hospital stay.

It may take a week or two to get back to a score of 750 (what's required to proceed). However, what is becoming a growing concern is Natalie in a house where some of us are developing colds. I was in bed all day trying to "sleep it off," and I feel much better.


Thanks for all your prayers. I have to say that I really appreciate all that you guys are doing for us. I can really feel the presence of your intercessions. I know daily this is the hands of our Good God!

Psalm 56:4 (New International Version)

4 In God, whose word I praise,
in God I trust; I will not be afraid.
What can mortal man do to me?

With all our love, The Orlando's



This is a special week for prayer for Natalie. Primarily because she is close to day 57 of her treatment. Day 57 is a substantial milestone in her treatment. If you remember back to day 29 when Natalie failed her MRD scan and was placed into the high risk category. Remember how God used it for good. You can read all about it by clicking the link below (Posting: October 8th)

Disappointed but Trusting in the LORD's Goodness

Taking place this Friday December 14th -- Day 57 chemo is exactly the same as Day 29 which contaings another (week long wait) MRD scan. I am asking everyone to pray that there is not one Leukemia cell present in her little body. She will have a bone marrow coring in her hip, and a special spinal injection to deliver a chemo to keep any disease from growing in her spine and brain.

I would also ask that you allow us to have peace that God is in control and everything will be alright -- in His hands.

The Orlando's

I am in a constant state of amazement how prayers are keeping Natalie from sickness. Here we are in the middle of winter and God has allowed sickness to be kept at bay. Natalie is such a strong little girl with an incredibly strong will. It's almost funny how being held down for medicine is often harder for her than any treatment or the medicine itself. She wants to do what she wants to do, when she wants to do it. I think to myself that is both a blessing and a curse. A curse that I will have to work with her to help her understand that her way is not always the right way. Conversely, however, this is what gives her the fight not to give up and to keep going. I am always happy to see her uppity spirit because I know that may keep my worst fears at bay.

As Thanksgiving passed this year both Dana and I have much to feel thankful for. Beyond the obvious, we have so many supporting family and friends. I am still amazed how many people are continually rooting for us and looking out for our best interests. I knew early-on that fighting Leukemia would be a long term battle (I didn't think quite as long as 2.5 years) but we are thankful for all the love and support that everyone has and is still lending to us.

This Thanksgiving we had a wonderful time at my Grandmother's house. She had some friends over and we all went around the table sharing what we were thankful for. It was such a sense of joy to hear people sharing things from the bottom of their hearts. During our share time 4 people teared up thanking God for his goodness. This year I will always remember how important family and friends have become.

To all of you outside our area. Thanks for being faithful to check back with us. Please know that your prayers have rescued us too many times to count. To that we are eternally Thankful. happy Thanksgiving everyone!

A miracle is when God intervenes in our lives in inexplicable ways. This week our family saw a miracle from God. It all started this last Sunday when a couple members of our Church felt a strong need to pray for Natalie. They wanted to arrange a time where they could come over an pray for her in person. We are they type of people to always welcome prayer and yet sometimes God even surprises us after we have seen so many prayers answered.

Throughout the diagnosis of Natalie's Leukemia, we have been working at slowly getting our lives back to where it was before (or as close as we can). There are many who have prayed to heal her of her disease (and we have no doubt that God can heal her) but we always have wanted to keep a rounded perspective that God is God and He can do what He wants. We didn't want to be let down if it wasn't in God's will to heal her. So when some people came to pray for Natalie, I just assumed it was for healing of her disease.

Over the previous few days Natalie developed a deep chest raspy-ness in her breathing. When she would cough her pour little lungs and throat would make a horrible croup-like sound -- similar to a seal barking. When they arrived we had no furniture in our living room except two chairs. Dana was not home yet and I was holding Nicole (who was crying). When they started praying they were praying for her little body being able to recover from her disease. They also prayed that they imagined someday that when all of this is behind us a day when Natalie could share how faithful God has been to her throughout this trial.

We socialized a little bit more and just like that they had gone. For one reason or another my Dad kept checking on Natalie through the night. My mom must have told me he got up nearly 10 times throughout the night. He told us that around 4:00AM in the morning the raspy breathing just went away! Gone. The next day, day after that, and the day after that there was and is no sign of the deep chest infection. Totally gone. Now a week later and she is still running strong. She was just dancing to Jingle Bells (with some impressive vigor I might add) this morning.

God works in amazing ways through those who are obedient to Him. Who knows why God did what He did. I stopped guessing why many years ago. But for us Dad & Mom and Grandma & Grandpa, we are glad He showed up that winter night in November.

Special Note:Sometimes we get feelings that in retrospect turn out to be significant. It can be as simple as checking in with someone or maybe being obedient to pray for someone for reasons you don't even know why. But, when you respond to God's call (making sure the call is from God), I think it brings God Joy to see the beautiful reflection of your obedience.

It's an incredible thought that God is working to draw us together as a community. How He is not leaving the dealings of our our daily lives up to us alone. He is calling on family, friends, loved ones, and sometimes vague acquaintances to build into each other. To look at each other with respect and dignity. Not to see what we see from a condemning perspective but a loving and patient perspective. It is truly amazing how if we just softly listen to His (sometimes whispers), He will heal our brokenness and the brokenness of others. All we need is the love of Jesus in our hearts and we will be able to stand strong together.

Special Sidebar:As an aside to be clear there are many acts claimed in the name of God. In any event we will be held liable for our actions, that's why the Bible is clear that we are to test the spirits because the Bible says not all spirits are from God. A few verses later in 1 John chapter 4 gives us clues as to what types of acts (in Jesus' name) are from God.

"7 Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 8 Whoever does not love does not know God, because God is love."

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

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!

Here is an update.

Natalie's tests have come back negative meaning that she doesn't have a bug. This is good news.

they are currently in a private room until the need arises for them to share or move to another room. There was a possibity that they could have gone home this week, but due to Natalie still having Diarrhea, they will wait till next week. They actually may get to go home on Monday!

Day 29 is Monday and when they will perform a final bone marrow (MRD) scan test. It will take a week to get results.

If she is below 5% she is early responder, if not then she is high risk. We are hoping for less than 1%.

They are also giving Natalie a port so she will have a surgical procedure on Monday as well.

But the best news is the potential for them to come home Monday or Tuesday.

Dom notified me this weekend that the doctors think Natalie may have contracted a bug of some sort in here GI tract.

This resulted in them being quarentined to an isolation room. Dom and Dana now have to where smocks and rubber gloves etc. If you have ever seen the TV show, House MD, you can imagine it.

Hopefully, Natalie will be ok and the tests will come back negative for any "bug."

If she has contracted a bug, they will be in isolation (to protect other patients) for awhile.

Please pray for them. It is just one thing after another. A real rollercoaster for the emotions.

Dom called me and told me they got back the results from Natalie's recent bone marrow test.

They are extremelly encouraging. Here is the background. When Natalie was first tested, her leukemia cells in her bone marrow were 50%. Part of the importance of Day 29, is that will be the next test to determine whether Natalie is a rapid responder and placed into a lower risk category or not.

Day 15 was the in between test and the results are... (imagine a drum roll here)

2%! Yes, they are down to 2%. This immediately puts her in the rapid responder category (she had to be below 5%). This is extremely good news and Dominicks voice on the phone sounded so encouraged. He sounded like someone had injected him with new life. Again, thanks be to God!

So after 2 weeks of treatment, things are looking great! But we are not out of the dark yet. We still have to get through Day 29. Hopefully with further treatment we will see the leukemia cells go to ZERO%.

So please continue to pray and thank you for all you have done so far! Thanks to those who have given money so generously. Especially those strangers who have never met the Orlandos, but showed the generosity of Christ. And thank you to all who have prayed, visited, thought, wept with, and loved this humble family. I know I can speak confidently for Dom and Dana that they do not feel alone.

Keep it up! Continue to pray for DAY 29 (Oct 1)

Sorry this news is a bit late, I was travelling and didn't have access to the computer.

Things have taken a turn for the better.

Dom called Wednesday and said that the doctors have cleared Natalie to eat. She had a CT scan sometime back and apparently it took some time to interperet. After reviewing it, they cleared Natalie to eat liquids on Tuesday, and Wednesday Natalie got to eat food! Yay. We have a happy little girl now! Thanks be to God for hearing our prayers.

Natalie is still not to happy about all the poking and proding, but at least her little belly is full.

I often assume many people know about Natalie's condition and the Orlando's fight. But this isn't always the case. I just ran into someone who didn't even know Natalie was diagnosed with Leukemia.

So far 185 different people have viewed this site.


If you haven't already, spread the word about this site.

Anyone who knows the Orlandos, knows they desire prayer above anything else. Tell you friends, neighbors, churches, and groups.

You can get up to date information and leave messages for the Orlandos.

The more people who know, the more people can help, pray, encourage.

Thanks!

From Dom:

We are exploring further tests to see if the Intestinal wall is due to (Teflitious) the splitting of the intestinal wall because of trapped air. Tonight we are scheduled for a CAT Scan to explore deeper. We need her to be very still and cannot fully sedate her because of the rush (a doctor (anesthesiologist ?) will not be present). If all is good they may allow her to eat tonight but if not her white blood cell counts are at zero and it will be a long time before we can feed her.

Natalie is crying almost every moment. It is becoming madning. Then we feel guilty that we are mad at our daughter who we are starving. It really is emotionally brutal.

If Natalie moves during the 20 min scan we may have to redo tomorrow, under full anesthesia

We will probably hear tomorrow on the results of her day 15 lumbar puncture (spinal). This will determine more accurately if she will be a mid level - early responder.

Clarification on Natalie's condition and more:

from DOM--
Housing is good for now, don't have any idea when they are going to release us or ask for more time. My feeling is max 2 weeks more from now.

There is no obstruction since all the food in her system is passed - we are not feeding her except by IV nutrition (like my previous email reads)

Since her white cell count is low (what aids healing) and (Because of the chemo) the intestinal wall has not healed. There is no perforation (that means air would be spilling into her abdomen) which would be extreme pain and hard belly. Not feeding her is a precaution. Which makes it even harder. The paper thin wall is split in two with air trapped between it. When her White blood cells rise, it will heal rapidly.

Hi Everyone,

As you can guess, we get little time to get on the computers here. I'm (Dana) finally getting a chance to look at the blog again and I have been back-tracking reading through the days. I can't beleive how far we have come and still to go. As I've been reading the comments I am moved to tears. We are so encouraged by the ammount of love and concern that our friends have for us.

Thank you!

People we don't even know are contacting us. God's family is so HUGE! It expands past names and faces, it is a relationship of the heart and of the spirit.

Looking forward to eternity with all of you! -Dana Orlando

Last night was extremely difficult for Natalie and the Orlandos.
Natalie cried all but one hour yesterday. Here is what is going on.


Natalie has had a bowel obstruction and this has prevented her from eating for the last three days. The doctors put her on an intravenous food diet so she is getting the nutrients she needs, but this doesn't subside her hunger. So we have a hungry little girl!


To compound the issue, Natalie is receiving steroids as part of the chemo. The side effect of steroids is an insatiable hunger. We have therefore a VERY hungry little girl.


According to Dom, the obstruction is clear now, but there is air perforating the wall of her bowel and this can be dangerous if the air moves to her chest. So they are still preventing her from eating normally. Please pray that the air doesn't move up.
The chemo is lowering Natalie's white blood cell count. White blood cells help with healing and are needed to address the issue of her bowel obstruction/perforation.

This is going to be a big week for Natalie and the Orlandos:

On Monday (Day 15) they are going to be doing another lumbar puncture to check for leukemia cells in Natalie's spinal fluid. This test is determining the progress of the treatment. If there are no leukemia cells that is good, if they are present that means more treatment and potentially moving Natalie to a higher risk category.

More importantly, the doctors are going to run more tests on Day 29 (OCT 1). This will be the most important test she has and will be the determining factor on her progress. We are hoping she will be in a 5 year survival rate (90%) referred to by Dom as "rapid responder" If by Day 29, Natalie still has Leukemia cells in her spinal fluid, she will be most likely placed in the "high risk" category with a lower 5 year survival rate (84%)

Dom & Dana asked that we all pray fervently for DAY 29.

Pray for her white count to go up before Day 29
Pray for her bowel obstruction/perforation to heal (so she can eat)
Pray for her spinal fluid to be free from Leukemia cells by Day 29
Pray for Natalie's comfort.

With Natalie there has been a new development:
Her stomach pain seems to be attributed the slowing down of her intestinal wall movement from her chemo drugs. This slowing down has caused the processing of her food to take longer and have built up gasses (from the drugs too) that are having trouble moving through her bowels. Because of this semi-blockage, her risk of intestinal infection has raised so Natalie is now receiving new antibiotics to shield the possibility of any intestinal infection. The now difficult challenge is that Natalie has been placed on a limited diet. She has to refrain from eating or drinking for up to 2 days. In extreme conditions we can wet a sponge and moisten her lips. This is particularly difficult because the chemo steroids really make her exceedingly hungry. Please pray that this slowing down (blockage) clears quickly and her fasting is limited to a minimum).

Also

This is also a good link from the The Leukemia & Lymphoma Society. It is accurate and informative.
http://www.leukemia-lymphoma.org/all_page?item_id=7049

Today's Update:

DOM/DANA/HOUSING:
Dom and Dana had to leave their hotel. Unfortunately, there was a conference coming in and they needed the space and since Dom and Dana are going day to day on how long they are staying, they didn't have prearranged reservations. So they are literally driving around to find new accomodations as I type this. Fortunately, someone from their church found a place they can stay. I believe they will be checking into that motel tonight. Please pray for their upcoming nights and accomodations. Also, if you know about housing options for them, it looks like they will be up for a month or more now.

We are hoping to find something long term for them like a short term rental in the Palo Alto area. If you know of anything, please let me know.

NATALIE
Natalie is having a second bone marrow aspiration today. This is a common procedure for leukemia patients. The doctors make Natalie comfortable for the procedure, but afterward she is sore.

Natlie now has one doctor who will oversee her treatment. Dr. O'Brien is overseeing all the other aspects of her treatment, e.g., Endocrinology, Vascular team, Oncology. Please pray for Dr. O'Brien and for God to grant her wisdom.

Natalie is experiencing some discomfort in relation to a number of things. Here is the list:

  • The PIC line needs to be adjusted or replaced
  • High Blood Sugar (causing temperature fluxuations, discomfort and need for Insulin shots)
  • Insulin shots every 2 hours and pin pricks on fingers. This is very very difficult for a 2 year old
  • Her Stomach is distended and uncomfortable
  • Natalie is receiving hormone treatment as part of her Chemo Therapy, this is cause her alot of discomfort
  • Constipation due to pain meds

Friday night, Dom and Dana got to go out for a few hours together. I think they even caught a movie. This connection time was a much needed relief. Thanks Jeff and Lee!

Just spoke with Dom.

Last night was very hard for the Orlando's.

Everything is really starting to wear on them: Fatigue, stress, seeing their precious daughter hurting, etc. Dom & Dana are just overwhelmed right now. They need connection time as a team together, but aren't getting it. Dana is sleeping at the hotel. Dom is sleeping at the hospital (and not getting much sleep due to interruptions, etc.) They really could use your continued prayers.



New Info today on Natalie's condition:

Natalie's blood sugar is high, so they are administering insulin. This results in monitoring the blood sugar hourly, e.g., finger pricks for a 2 year old every hour. This is very unpleasant.

Natalie also have very low platelets. Doctors can give her more, but they are hesitant to give her too much as her body can build an immunity to them. Find out more about what platelets are and what they do here.

Natalie is also having stomach/gas pains, which can be very uncomfortable for a 2 year old. She needs to eat regularly but has a low appetite and the combination of pain meds can make her constipated. So the result is an uncomforatble little girl who is probably scared, not knowing what is happening to her.

Dana & Dom are definately in need of your prayers today!

They ask that you would pray for 2 very specific things:

  • Endurance
  • Sensitivity with each other

They are getting hit with fatigue, mixed with not getting any relational time to spend together, and the stress of this entire situation.

Special Thanks to Grandmas and Grandpas who have regularly been up helping and to Lee Danzler who has been going up regualary to give them assistance. There may be others I haven't named, but thank you to all who have helped.

New info in today. I spoke with Dominick on the phone yesterday to clarify about Natalie's treatment. It turns out she has had her first round of treatments. There are several different drugs that they are giving Natalie, with the most intense being the chemo therapy, make you nauseated, potentially lose your hair kind. Nat will probably be getting that drug on weekends, and as I understand, on Saturdays. But we will see, things may change depending on Natalie's response to the therapy.

She responded pretty well to this first round. She didn't even throw up. That is certainly a praise.

As the treatment continues, please pray for little Natalie. Being poked and proded is no fun, and if you can imagine a 2 year old trying to understand the strange feelings certain drugs may bring on, then you know how disorienting it is for her.

All this leads to the next area of need. Dom said he found out today that Natalie's white cell count is low, so it looks like they will be in for at least 2 more weeks. Dom and Dana are both super tired and as you can imagine, there is strain on their relationship with all the stress.

  • Please pray for Dom and Dana to be united and to get time together.
  • Please pray for Nicole to continue sleeping well (as she has been.)
  • Please pray for Endurance for their families.
  • Please pray for Natalie to respond to the therapy well.
  • Please pray for continued financial help or consider helping since they will have to secure housing and daily food for another 2 weeks.
  • Please pray for Natalie's roomate. Another child going through therapy. That little one was throwing up all night last night. This keeps the Orlandos up all night with nurses, etc. coming in and turning on the lights and talking at normal levels.

I am going to add a donation link on this site soon for those of you who want to donate to Natalie's care. It will be serviced through PayPal and go directly to Natalie's bank account. More on that soon. In the meantime, you can contact Heather Hughes about financial donations.

Lastly, Please remember to post your comments, questions, or prayers to Dom and Dana. As they get time, they will get your messages of care and that is such a huge encouragement to them. And tell your friends about this site. The more people who know and pray the better.

Just got a call from Dominick. Here is the update.

The last couple of nights were on and off rough. Natalie has had a fever, and it is unconfirmed if it has subsided as of yet. Dominick didn't mention it on the message.

He did mention that the doctors have inserted a "PIC line" into Natalie's chest. The purpose of the pic line is to be a direct delivery system. You can find out more by following the link.

Unfortunately there was a complication with the PIC line. According to Dom, it went up toward her neck instead of directly into her heart, meaning that the line may not serve as a direct line any longer. This is yet to be determined by the doctors. As a result, Natalie has not received any Chemo treatments yet to my knowledge.

Additionally, Natalie received some pain medication (I assume due to the procedure), and it has caused her to be a bit grumpy and in Dom's words "tripped out."

It is a frustrating waiting game for Dom and Dana as the hospital is short staffed due to the holiday. Please pray for this situation. Dom described it as things "are not firing on all cylinders."

However, to end on an up note:

A great praise from Dom is that they did a spinal tap to check for Leukemia cells in Natalies spinal fluid and brain. They expect there will be some, but the core they tested revealed none.

This is wonderful, becauase it means that the cancer is not as advanced and it places Natalie into a lower risk category.

Thank you Jesus!

Today is Dana Orlando's birthday! Leave a birthday wish for Dana in the comments section.

Dana, may you day be filled with life and hope!

Here is an email from Andy Lewis, Pastor of Faith Community Church:

Dearest Faith Family,Dom, Dana, Natalie and Nicole have been overwhelmed by the outpouring of prayer and amazing support provided by our family! God has already used us to be a huge support and encouragement to them in their time of need.Yesterday Natalie was confirmed to have ALL leukemia which is apparently a very treatable if not curable form of leukemia. We thank God Natalie is considered by the doctors to be a low risk patient who will not have to face the prospect of a bone marrow transplant! They will all be at Stanford over the course of this next week to get treatment started. The good news is Natalie's treatment will not be nearly as difficult as it could have been. Dom tells me that as soon as Natalie is stable she will be able to come home and then in the first month they will be going to Stanford once a week.

In the second stage of treatment they will be going once a month and then over the course of the next two years they will be able to administer chemo-therapy drugs themselves at home. Dom and Dana are both relieved by this news.

As of today we can pray for Natalie as she fights a fever. With her suppressed immune system the fever is not a surprise but it is a setback in her treatment. Dom and Dana are now checked into a great hotel that's paid in full for the next seven days and is only five miles from the hospital! They also have received many visits already and they are so appreciative of all the love they've received. One additional thought. Dana's birthday is tomorrow. If any of you want to send her a card or a thoughtful gift, Heather and Jonathan Hughes will be delivering all of our gifts on Sunday afternoon after worship. If you would still like to send something you can
drop it off at the church office, contact Heather at 419-5355 or give Heather your gift this Sunday morning.Once again our God is proving Himself faithful even in the face of events we would not choose for our lives!

Thanks for your prayers and concern.

Andy

A couple of challenges that the Orlando's are facing right now have to do with housing.

The accommodations at Stanford Children's hospital are booked. This has forced the Orlando's to stay at a hotel - finance here is the challenge since their stay at Stanford may be as short as a couple of weeks to months.

The second challenge is caring for Nicole, their newborn, in the midst of this. Nicole, being a newborn, is putting her mommy & daddy through an intense sleep deprivation course. As a parent of three, I have been through this course and can tell you it is quite intense. The best thing for a baby to learn sleep is a consistent routine, and trips back and forth to Stanford hinder that routine.

Here is a praise: An anonymous donor has generously afforded the Orlandos housing at a Holiday Inn Express near Stanford for a week. This is a great example of the Lord's provision through his body.

Secondly, I know from Andy Lewis, the Orlando's Pastor, other individuals have contributed to the Orlando's financial needs by giving cash. Yet again, God is working to care for his kids.

Here is how you can help:

Pray for God's provision in housing.
If you feel compelled, offer to help financially to help them have a consistent place to sleep.
If you know of a housing option in the Stanford area, please contact me.


Heather Hughes is coordinating all financial gifts to the Orlando's and her information can be found on the August 29th update or you can email her.

Over the past few days, Natalie Orlando has undergone various tests to diagnose if she has Leukemia. She and her family are at the Lucille Packard Children's Hospital at Stanford.

Today it was confirmed that Natalie does have Leukemia. Here is an excerpt on the type HERE:

Acute lymphocytic leukemia (ALL) is a type of blood cancer. Other names for ALL are acute lymphoblastic leukemia and acute lymphoid leukemia. About 5,200 people in the United States are expected to be diagnosed with ALL in 2007. It is the most common type of leukemia in children under age 15. The risk of getting ALL increases in people ages 45 and older. However, people can get ALL at any age. Most children with ALL are cured of their disease after treatment.

I spoke with Dominick today (Natalie's dad), who asked for prayer that the treatment go as smoothly as possible. As you can imagine, this is extremely difficult and both Dom & Dana need all the help they can. They just gave birth to their second daughter last month!

Here is a list of prayer requests from their church:
  • Pray for miraculous healing for Natalie
  • Pray that Dom and Dana will be sustained by God's peace
  • Pray Dana will be able to continue feeding their new baby Nicole with all this stress.
  • Pray for the right housing accommodations while they are at Stanford. For now Ronald McDonald house is full
  • Pray for the financial means to pay for hotels and food.
More updates and information will be added soon with ways you can help. In the meantime, If God moves in your heart to help out in some way please contact:

Heather Hughes:
heatherhughes2@juno.com
cell 831-419-5355

Or

Rob Namba
robertnamba@gmail.com
Cell 831-818-7724

Heather will be coordinating visits for them and any financial assistance. Rob Namba manages this site.

Lastly, if you would like to express your prayers and thoughts with Dominick and Dana for Natalie, please feel free to post them here by leaving a comment.

Natalie Orlando

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