Since Natalie's birthday 4th birthday is soon approaching I was digging through some old-ish photos. I fuound this one of Nicole 365 days ago (6 months old). Now Nicole is 1.5able to say three word sentences, climb stairs, jump off the couch, walk around in mom's shoes and throw a fit (she's not too old to stand in the corner though!).

I am amazed and reminded how fast they grow up. I keep telling myself to savor every moment. because a moment can turn into a week, and a week can slip into a month, and so on...

Anyway happy birthday little sweet Natalie. Mommy and Daddy are so proud of you and love you more that we can share!

Well it's official! Natalie took her first steps all by herself this evening. There were rumors (from the grandparents sector a week ago) but you never know about those people. They're always looking for the edge. Heck, according to my mom Natalie and Nicole are multidisciplinary genius' in 10 industries and counting :).

Natalie took FIVE LARGE STEPS directly toward her mom(Dana) tonight. I'll leave out the part that she was totally buck naked...you didn't hear it from me! Well I guess there's nothing left for her to accomplish but to get a job. It's a heck of a time to enter the job market strong into the recession, only 3 years old... But, I guess everyone has to start somewhere.

Missing ya'll -- Dominick

Hey all!

The latest on Natalie is that we are praying that her IV lasts the till Tuesday. This is highly unlikely but since Surgery is moving departments when they are available it doesn't' make much sense to put in something better than and IV if it's only going to be in for a few days.

If we can get the IV's to last till Tue (and we are able to have consecutive Negative blood cultures) we can put in her new port. She has to get poked every morning to draw labs, cultures and misc other tests. This is not fun and her arm is rather black and blue. She's tough though and we are enjoying our time together. Lots of Elmo, video games, hard boiled eggs and coloring.

Specific Requests:

  • IV doesn't dry up, make it till Tuesday
  • New port goes in on time
  • Multiple negative cultures in a row
  • Her little right ankle does not become sore because it's in a cast-like brace (keeping her foot pointed) in effort to keep IV flowing smoothly

Praises:
  • Her counts are up and her immune system is full steam ahead at 2,000+
  • Natalie is in great spirits (too good to be true)
  • No fevers have surfaced for a long time
Thanks for fighting with us. I have had at least 10 good talks with people about God during our stay. It's been so Good. He's using this situation in mighty ways.

--Dominick

Hello everyone!

It's been a long time since there has been anything to report about Natalie but we could use your prayers as she is sick. We actually have (maybe wrongly so) allowed ourselves to think things are pretty much back to normal. Well to our surprise Natalie just recently has been admitted to the hospital again. But we are all doing pretty well now.

The serious condition of a bacterial blood infection is what the doctors feared Tuesday 11/18/08. Because of a fever rushed from home to the local ER. After a night there we thought we'd be heading home but we found out her immune system was nearly zero from this bacteria. This being the case we were taken by ambulance to Santa Clara Valley Medical instead of Stanford because a lack of available beds.

Also pray for Nicole who misses us. She has a cold so we are not able to see her because of the risk of getting Natalie sick. My mom has been taking care of her at her house for nearly a week.

Natalie is doing so well now. You wouldn't even know she was sick! She plays her instruments (cat piano) and the shakers, takes rides waving to the staff in her little wagon, and enjoys only the company of a bag of pretzels these days. The doctors have done a stellar job at targeting the bacteria and being thorough in her care. We are praying for:

  1. Two negative blood cultures (making sure no bacteria is present in her blood.
  2. An immune system rating of 500 (she's 200 now and you and I are 5,000)
  3. Two consecutive days without fever.
After a tiresome and scary start we are in a great place however, we are reminded (for all of us) that we only have today. Make the most of it.

Love you all,

Dominick

Well, it has been a full year since Natalie's diagnosis. Last year at this time (on Dana's birthday) our lives were turned upside down with the news of cancer. I remember perched by her bed side crying a lot. In retrospect, I feel so thankful we've made it so far. We have 1 year and 4 months left of treatment then another 5 years of checkups to be considered healed from this terrible disease. But, there will never be a time as hard as those first 30 days (I pray).

This Labor Day we are heading up to celebrate our anniversary of our great battle, just north of Sacramento to a town called Berry Falls. Camp Okizu will be the site of where we we will get to reflect on this years journey. I can say that it's been the grace of God that has delivered our hearts this far. He is good and there is no end to His great love for all of us.

Looking back I can think of two lessons that have stood out to me. First, our lives are temporary here on earth and we should never grow tired to fighting against the less important things that try to dominate over our precious relationships. Second, and maybe most importantly, "God is good in even the hardest of times." -- Until next time...

Thanks for standing by our side,


The Orlando's

Dana and I wanted four our family and friends to be the first to know that we are officially now HOMEOWNERS!

After an exhausting battle we can now consider ourselves officially strapped for the next 30 years. But it's a welcome addition to the family. I have to thank so many people, from Tax people, to Business partners to most of all our Realtor Genie Lawless has faught tooth & nail for every square centimeter, she has been the best agent anyone could ask for. Not to mention really sharing the burden with us from a Godly perspective. There is something about going through trials with other like-minded believers. All of us really knew if we were going to get this place it would only be by the grace of God, who deserves the ultimate thanks!

I wrote earlier:
"We have been praying for this house and if the loan funds, it will only be by the grace of God. So, we feel if it's God's will it will only be by Him. Just a few bumpy road highlights have been:
Kidney surgery (key player - out for a month), Signatures from 5 county "Government" officials hours before leaving for vacation, 30 days of physical therapy from a sciatic back injury (loan officer), 3 "nail biting" law firm contract reviews, nearly lost the loan for $125 appraisal mistake, 2 company closures, 8 extensions, 450 faxed sheets, countless PDFing and a dead cell phone (that got upgraded)
"

....and a partridge in a pear tree! :)

Now the tough part begins - the remodel. All I have to say is BRING IT!

Thanks for all your prayers!

--Dominick & Dana Orlando

Thank you Everyone for your prayers!!! Praise our God for His many blessings!!!!!
We have all been praying for Natalie's platelet count to increase. Well, she has increased up to
85, which is awesome so far. Keep praying for it to continue. With this increase happening and her feeling so good, the doctor's feel that it was the medication that caused it to lower in the first place and that she is not in a relapse. PRAISE YOU JESUS !!!!!
She, Mommy, Daddy and Nicole went to spend the day with Auntie Stacie, Uncle Chris, Cousins, Christopher and Cailiegh. Natalie had a blast, playing with her cousins, which is so great that she is able to participate in the playing, instead of sitting on the side watching.
Thanks again for all the prayers and please keep them up and prayer for the family, to empower them with God's peace and strength.
Blessings to All


There really hasn't been any news for Natalie for a while and we have really been enjoying just being (more of) a normal family again. Since we are in the last phase "Maintenance" of her treatment (2 years long of less intense and spread out chemo) we are down to 1x per month Stanford visits.

I am witting because a few days ago the Doctors saw that Natalie's blood platelets were falling for no apparent reason. Doctors are a bit concerned. SO, PLEASE BE PRAYING THIS WEEK! We are going to have another blood test to see if the blood platelets (clogging part of the blood) count is rising falling or holding.

We want the count to rise but if the test doesn't reveal them risen 5x what they are currently, the Doctors are going to give Natalie a spinal tap later in the week. This test will verify if it's just a scare or if the cancer has returned. If the cancer has returned we'll need to start Natalie's treatment over from the beginning. Then there will be discussions of a bone marrow transplant (this is 50x more brutal than anything we went though already). I don't think my heart can handle bear that weight again.

However we are trying not to panic and keep calm. There are a lot of factors in our favor: First, Natalie's looked like she's had a cold (and her sister has one). This has the potential of knocking down her platelets. Second, they stopped all oral chemo and her platelets still fell...But one of the other Non-chemo meds Natalie's taking may (in some cases) lower platelets. This being the case we have stopped that med too. And for good measure, she looks so healthy and vibrant. None of her internal organs are swollen and all her other counts (hemoglobin, ANC immune system, red blood cells, etc) are at good levels.

So, we should just keep a cool head and see how things turn out:

  • Pray for 5x the platelets
  • That the doctors would feel confident about their decision
  • All of us would have peace

Initially, I have a good feeling that she is doing fine, but it's just another one of those scary things! I really think this is God showing us that He's in control no matter what the outcome. We had a "word" this week that when it's impossible for mankind to work, He works. God has been so good to us and we can't forget that. He is faithful no matter what good or bad comes our way.

Thanks for all your prayers and thoughts.

The Orlando's

What a wonderful day!!! Dana & Dominick had a party for Nicole, Natalie's little sister, She turned 1 year old on July 3rd. Nicole & Natalie had a great time. They Laughed, smiled, played and just plain enjoyed themselves. Nicole shared her new toys with her big sister. Good job Nicole!!
Natalie is doing well right now. Seeing her laugh and giggle is such a blessing. She is eating good at this time and starting to put on a little weight. Keep praying for her to increase the variety of food that she will eat and to keep the effects of the medications at a minimum.

I just have to say Thank You to our Lord and Savior for special times like today. Thank you, Thank you, Thank you. (birthday photos)

video

It's been such a long time! Things have been so busy. A few weeks back we were actually hospitalized for nearly 2.5 weeks. Natalie is doing great and we're looking forward to starting summer school when she is up to it.

The real reason I'm writing is... we're excited to announce we've put an offer in on a little house of our own. Actually a condo, much like the one in the video. We are asking for prayer because the temptation to commit too much financially. We figure there's never a good time to spend 1-billion dollars (not really but it feels like it).

God has done a steller job navigating our family so far, so we thought, why kick Him off the job now?. We feel there are so many variables, we are asking God to go before us because He really knows us best.

The house will need a lot of work (especially to make it ready and super clean for Natalie) but we are willing and eager. We love the location. It is so central to a ton of the things we love to do. And of course, it is not 100% perfect, but we hope God says YES! but if not we know He's got something better for us -- maybe something on wheels?

THANKS FOR YOUR THOUGHTS AND PRAYERS :)
video


Tonight I lay beside Natalie - keeping her company as she drifts off to sleep. Her little hands move about me - a reassurance that I am still there, since it is dark and she cannot see me. I have been wondering why, encroaching upon the end of this intensive phase of chemo, I have been so nervous, afraid somehow of the end. Then it hits me - I have been holding my breath... waiting for these final weeks of this phase. Some how "maintenance" (the easier phase of chemo ahead) being "the light at the end of the tunnel." But as I see the end coming I realize, it is not the end. There is still so long and far ahead. Even after two years of this next "maintenance phase" we will have 5 years of remission before she is declared healed. I just don't know if I can "hold my breath" that long. God, how do I "breath"throughout this next phase of chemo? How do I learn to live as if I am not bracing myself for great challenges, always on guard for the possibilities of what can go wrong? How does our family get through these next many years without fear of cancer? God, you are our peace, our hope, our comfort, our shield... we need you to get though every "today"

As I lay there next to Natalie, crying as I grieve the consequences of cancer, I feel small. Instead if felling like her mom or the adult, I feel small - just like her. Almost like I was just her little friend and I was spending the night with her. I felt like a little girl crying out to God. It was strange - I don't think I've ever felt that way before crying out to Him, yet somehow it was familiar. It reminded me that I am still His child. I am not expected to know everything or be everything (in other words be God). I am His little girl and He loves me. I then spoke out loud and told Him how much I love this little girl (Natalie) He put in my life.

I had memories of seeing her for the first time in the operating room (above) as they brought her to me all bundled up. I could only see her little face. And then, flashing over her life to this night laying beside her, I realized how much she is a little extension of who I am... and that is why we are so attached- that I love her so. And then I realized that WE are all extension of God... created in His image. And that is why He loves us.

"Natalie got to come home Tuesday night. Her immune system cell count went from 38 to 500 in just a few days, which usually takes a week or two. So we got a little miracle from God for Natalie.Natalie still has the chemo treatments on going and she is uncomfortable, has bad sores in her mouth and throat, difficult to eat, gets agitated sometimes too. Lets please continue to pray for more miracles for Natalie. I pray that the medicine will work against the cancer, but that God will make the side effects be very minimal and will heal her sores and let her be more comfortable and of course that the cell count would be reasonable to the medicine but not at the super low numbers that takes her to the hospital." - Jean M.

Dominick had to take her back to Stanford on Friday. It was long day (8AM to 9PM) Natalie and her Dad were getting another Chemo treatment. This time she again got medication that caused a severe skin reaction, she cried for a few long hours and her face and eyes became very red. The Chemo she received required that she be extremely hydrated so after 4 hours of fluids, Natalie's eyes became really puffy. Her mouth sores and other symptoms have mostly subsided but this new medicine threatens the same. We ask you to continue praying for the next two weeks as this represents the last of the really heavy treatments. - Ruth O.

These next two weeks are going to be hard as we may travel to Stanford 2-3 times
to receive blood transfusions in addition to our regular weekly visits. We are continually amazed how situations are presenting themselves in many of the people we meet. Just yesterday we chatted to a three people about God (some believers and some not) and shared how God has been the center of comfort though this time. I really believe because of your prayers, we are truly seeing the movement of God's hand in many of the people we meet. Praise God for Yu'All (that was for our southerners readers! :) - Dominick O.

This is Nicole's "Your not going to give me what I want?" face. I confess, it works pretty much every time!



Well we recently we were informed that there have been some ladies who have been making blankets in Natalie's name. They have initially made 11 blankets and plan on donating them in Natalie's name at Stanford's Children's Hospital. We are continually amazed how people are joining arms (in this case fabric) to support us in our fight.

Please continue to pray for us as we are in the middle of heavy chemo drugs. Natalie recently had to head to the ER because of a bout of diarrhea (causing dehydration). She spends most of her days crying and whining because she is so uncomfortable. We have to just hold on till Thursday (maybe a few days after) till we can stop administering this horrible drug Dexamethasone.

Working to make the best of our hospital visit we pretended we were heading out on a picnic. Complete with Sandwiches, oranges and pickles we had a wonderful lunch and a great little nap (all in the comfort of an isolated contaminant free room at our local hospital. When we look ahead to how far we have come we are in awe. It is a daily prayer fight and our support staff is truly amazing. If you are reading this you are part of the fight too. Thank you so much for your prayers. They truly mean the world to us.

The Orlando's

My Mom Wrote this morning:
Yesterday was the most challenging day, since Natalie has been home. The steroids she is taking every day this week are causing her blood sugar to rise. She is constantly upset and restlessness. Wednesday she will be given another medication that will intensify her frustration even more (so please pray for that). We've all felt your prayer cover from moment to moment; God's indescribable peace lifted our spirits.

At one point in the day Natalie's annoyance was dramatically, exhausting. I just cried out loud "Jesus give us some peace" and Natalie just laughed right out loud, then snuggled into my arms and drifted off to sleep. In my helplessness, I had called out and God showed up. Thankfully I'm on familiar terms with God showing up… at that point I knew He would get us through this. I can't say it enough. God is good!

-Ruth

Today went well. No surprises. It is always hard when we start a new treatment phase. Learning all of the meds and all the pecularities that sometimes follow the adiministration. Natalie is on a few new drugs this round and some older ones have come back. The most notorious return is Dexamethasone (steroids). This is the drug that will cause the remainder of her hair to fall out amoung other things like intense hunger and irritability.

Last time she took the steroid she had a few issues. One, her Blood sugar shot through the roof. There was one time that the machine didn't even register it was so high. That was scary. Though it is better to be higher than lower, it was concerning when we had to give insuline injections every few hours. The second was her intense irritability and hunger. If we fed her constantly she would have been in a tough predicament. So we ended up feeding her 2-3 cheerios every 3-5 seconds. We have a week on with this drug and a week off before we jump back on for the last remaining week, so we are hoping that things don't get too out of control (which might put us in the hospital).

Both Dana and I have been so thankful for all of your prayers. I know this is a cancer battle but I really believe that a large portion of this fight is spiritual. I see it as all of us going to battle together. We are fighting to win this battle physically yes but Spiritually too. This Spiritual battle is raging all the time and we have truly seen the fruits of all of your prayers. Incidences have happened too numerous where Natalie began getting sick and it just went away. All to say Glory to our good God. And bless all of you for your faithfulness, our debt to you is great and our appreciation is even greater. Love you all - The Orlando's

P.S. The next two months things will slow down considerably for us. Most of Nat's treatments will be home and Stanford trips will be held to a minimum. Please, please, please pray as we may be making some significant judgment calls to the med schedule (due to her last seizure). We think Natalie's body my be reaching a very low point with all the unrelenting treatments. It's in sight - 2 months will be here before we know it... (that will be a glorious day!)

Last night some of the Twin Lakes Church college students sent sweet "get well soon" cards to our House. Natalie (A.K.A. Nat, Natalia, Natty, Nattles and Little Goose) had a great time rolling around in all her beautiful cards - soaking them up. She wanted to read them over and over, she might of even taken a few to sleep with her. Thanks for your encouraging words and prayers and most of all your hearts. May God bless you for your kindness!
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Since we were a was a last minute fit-in, we were scheduled for the last slot on the last day of the week (Friday)! Because, there was a chance we could have claimed a cancellation slot, Natalie was not allowed to eat since midnight the night before (that didn't happen). Since she goes to bed early, her last meal was 8pm and we didn't get home till 8pm, so Natalie didn't eat any food for 24hrs!

I can say with confidence that, it was by prayer that Natalie did so well. She only lost it toward the last 15 minutes. I knew this would be the case, so that's why I emailed or called every person that I could. It was difficult, but it could have been so much worse. Dana and I know from experience. If you remember back when Nat was diagnosed, in the hospital she didn't eat or drink for 6 days! What's worse, they were providing IV nutrition, which gave her all the energy but felt all the effects of being starved the entire time. In case your wondering she cried for 6 days! We were not looking forward to that again, but this was hard but easy at the same time.

We have not heard much back yet from Radiology yet, but our Dr. preliminarily said noting looked out of the ordinary.

Again, we are thankful for all of your prayers. You are all fighters, thanks for not loosing heart!

Love the Orlando's

P.S. if you haven't checked out the RSS feed to this page, you can find the link in the top right of this page. Simply click it and the RSS will be added to your Google homepage. Anytime, there is a new post you'll see it on that Homepage page. You may want to try it, everyones doing it :)

Well, It has been an eventful week - to say the least. In our last posting Natalie was beginning to run a fever but swift prayers took it away very quickly. Unfortunately, the next day she had one again. We had to make the decision on our own to go directly to Dominican, because it came on quick. We blew passed the warning temperature 100.3 and quickly shot up to the "go to the hospital" 101.3 degree mark.

We called Stanford right away and were not able to get in touch with any of the "on call" doctors. It's imperative to get a hold of a Stanford Dr. so that they're able to guide Dominican doctors in the exact treatment path. It was a very stressful for both Dana and I. I was constantly on the phone (an essential tool) with the after hours Stanford operator working every angle to connect Dominican with Stanford. It was a full hour at Dominican before we got things rolling. I don't know what was going on!

Time is so important since, when we made our first initial call within 15 min Natalie's temp shot up to 102 degrees (almost a full degree higher than ER emergency temperature levels). This means that if she had an infection, it was that much closer to causing severe (and perhaps irrevocable)damage to our little girl.

Since the securing of Natalie's medical treatments needs to be so specific, both Dana and I had to do everything in our power to really make sure the ER staff were doing everything correctly. Stanford has educated us well. The depth of our knowledge is pretty solid. However, the agony of waiting seemed to stretch on for eternity, as Natalie's fever kept climbing and any treatment hadn't begun yet.

Well in the end all worked out well and we were able to go home. It was only a few days later that we witnessed (what we think to be) Natalie experiencing a minor Seizure at the breakfast table. Her eyes crossed and she became limp. I was freaking out inside. This was seemingly caused by a reaction to some of the Spinal Chemo injections that are in full swing now. Praise God she had high platelet's levels which calmed nerves about any possibility of her brain bleeding and not being able to clot as a result.

I know it sounds weird but the truth is Natalie is outwardly doing great! We are keeping a very close eye on her as her counts begin to fall (which is expected). We are heading up to Stanford for a checkup today, just to dig a little deeper into the seizure event and cover our bases.

I was thinking to myself the other day and I really feel that since so many of you have become an active part in Natalie's lives, it's as if she has a whole bunch of parents. How powerful of a thought to know that we are all fighting this together. And together we stand with open arms, asking for Gods grace and mercy. We miss all of you. -- Dominick and Dana

I am glad to report in a matter of hours Natalie's temp has come down to a normal level. Other than the decline of Natalie's temp, perhaps the great work here is the "flooding of peace." that came after we had asked for prayer.

I imagine this is how the great saints of the Bible advanced forward even during times of extreme torment. For those who have experienced this unique peace even in difficult times, one can only look back at the the mountain traversed only (out of dumbfounded shock)give the credit to God -- and that's what I am doing now...

Philippians 4:7
"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

I cannot guarantee tomorrow, but I know my God has rescued me today. I am ashamed at how many times this lifeboat has delivered me, and yet in the face of adversity my knees still quake.

Since God is not bound to time and date, maybe God even responded to the hearts of those who called out to Him, even after the this event has come and gone.

Great are the mysteries of our God! And Great is the grace of His hand. Thank you for your faithfulness. For right now we are well, and that's enough for me...

We're reminded that we have been getting a little too comfortable in the security of Natalie's care. Yesterday we received word that there were 3 children (participating in the Leukemia study with down syndrome) who have passed away because of bacteria and fungus exposure. Since most leukemic patients don't have strong immune systems we have to keep an eye out for rising body temperatures so as to hit any sickness with mega doses of antibiotics and other kinds of meds.

As we speak my heart is heavy because Natalie's temp is climbing. I try to put it all in the LORD's hands but it's so hard. I need to remember that God makes everything good even though we don't understand -- but I am afraid. I am witting to ask you to pray that God intervenes and keeps the sickness away.

Dana and I thank you all for your support. The next two months are going to be (what we anticipate as) the hardest phase of her treatment. From now till March or April Natalie will be really battling nausea and toxicity levels in her little body. After this phase it will be more of a low key time (2 years) of oral medicines. But for now I am a bit anxious and can't seem to feel peace.

Thanks for your prayers :)

Dominick and Family

Hi Everyone,
This is Dana. I've been wanting to write an entry since Natalie's birthday..... well, you know how that goes! But at least it is still January! Natalie's THIRD BIRTHDAY was on Jan 2nd and boy, did we CELEBRATE! We put together a Music Together music class with several of Natalie's little friends at a local Music Together classroom. If you know how much Natalie loves music, you can just imagine how much fun she had.



She had such a blast being around other little kids (something that doesn't happen much lately!). And God really answered prayer... Natalie's counts were excellent that day and her spirits were high. I think a total of 8 kids were there. Thanks to Elizabeth for conducting a great, interactive class for us all and kudos to the parents for doing an amazing job participating too!

I didn't anticipate what an emotional day that would be for me. Not emotional in a gloomy way, but in a grateful, overflowing with appreciation kind of way. As I looked back over Natalie's short 3 years on earth, I was overwhelmed with the many trials and triumphs... the mountains and the valleys that we have traveled as a family.

Anyhow, I've attached some pictures for you. Hope you enjoy!

-Dana

It seems like we've been waiting forever to hear the results of this second MRD test (like the one we did on day 30 of chemo which gives a count of any remaining Leukemic cells). Come to find out, this test is only done for research purposes behind the scenes and it is not a test intended to be shared with the family. So, that is why we will not hear back from the lab conducting the test this time.

I think we heard the results of first MRD b/c one of the doctors on Natalie's team was also part of the research team (?). Anyhow, long story short... we will not hear the results of the MRD, BUT our oncologist did tell us that when she looked over the sample of cells herself through her instrumentation, that it looked completely clear of any Leukemic cells to her naked eye! So, we are on the right path! Thanks for waiting and praying with us. We are trusting that the chemo is doing exactly what it is suppose to.

We are sill in the midst of waiting for the results from her (3 week ago) MRD scan. If they come back favorable, we will know we are on the right path for treatment. I have to say that I am quite impressed with Stanford Children's Hospital. Though there are a lot of scheduling coordination, I have never felt more part of a medical cause like this one. Since it's so well known, all of the good hearted people nearby seem to flock. World class musicians and vocalists, firemen, sports icons and the like are always seen connecting with kids. It almost feels like we belong to an elite club or special group. During the holiday season or Halloween you can't get out the doors without someone passing some good cheer with a gift or special holiday memento. And wouldn't you know it the Dr.'s are pretty good too (good enough to carry a world renown title).

Thanks for everyone who reads this who's helped us. We are truly better people because of you! :)
test vide #1 from dominick on Vimeo.

Natalie Orlando

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