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!

Natalie Orlando

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