Friday, May 29, 2009

We're Really Home For Good!

What a day! We were told yesterday that Friday is out for going home since counts dropped and then this morning everything changed again. It's the story of our life- unpredictable, surprises at every corner, and emotional. Got up at 9:00 am and the first question on my mind was what Natalie's ANC is. The nurse smiles and says, "It's at 1,240."

"Are you serious?" I leap out of bed so surprised at the huge jump in numbers.
"Does that mean we can go home?"

Natalie is still asleep and upset that we are stirring her from her sweet slumber. She doesn't want to go home and doesn't want to talk about it because of the huge ordeal with taking a big, stinky pill last night. Since they are trying to transition Natalie from IV antibiotics to oral, she had to begin taking her antibiotic by mouth last night. What a fight that was. She had the biggest fit ever because the pill smells like poo poo to her. She doesn't want to go home if it means taking the poo poo pill by mouth. She finally choked it down after much tears last night.

The doctors confirm what I want to hear this morning- We can go home! They don't know how Natalie made her counts jump so high, but counts are so high that they feel good with discharging her. The bad news is that on top of taking the antibiotic orally, they want to take the pick line out before she goes home.

My emotions are all over the map. I'm too tired to battle with Natalie over the pill and I definitely do not want to even let her know about the pick line removal. I call Grant to pass on the good news and ask him to come immediately for support because Natalie is having a big fit about going home because of the pill. They wanted her to take the pill again this morning. I spot Eileen, Natalie's child life specialist by the door. I've never been so happy to see Eileen. She's trained to talk to kids when they are anxious about procedures and she has a great relationship with Natalie. I send her to Natalie's room as I email everybody the confirmation that we are going home.

When I get back to Natalie's room, she is happy as a clam. She's laughing and talking with Eileen. Eileen has worked her magic. She understands that Natalie is overwhelmed and she is so patient with her.

Good news-they can change the pill to liquid form and just push it through a syringe through Natalie's NG tube. She can keep the tube in until June 9. Only 3 more days of the stinky antibiotic and Natalie does not have to deal with swallowing it after all.

The next battle is letting know her pick line needs to come out. Of course, she is not happy. The nurses and doctors are extremely patient with her and wait the entire 2 1/2 hours for Natalie to remove the tape dressing from her pick line. It took 2 minutes to remove the line after Natalie took 2 1/2 hours to remove the dressing herself.

At 3 pm, we are ready to go. There's a gathering, banner, clapping, and some tears. Natalie and I can't cry. We are so overwhelmed and shocked. We can't believe this is really happening. My body is in some state of emotional shock. Why can't I cry? I normally cry so easily at anything. Is it because I've cried almost every day for the last 6 months that the well broke? The nurses are crying and Grant is crying. I'm just so happy to go home, but I can't cry. I am worried that something is wrong with me.

We get home and Natale is so happy to see the beautiful banner and balloons for her in front of our house. She is happy to see more beautiful decorations in our house and her room. It's perfect and exactly what we wanted.

We eat, and the kids watch a movie. I fall asleep for 2 hours. When I wake up, my emotions kick in. I am crying now as I type this. What a relief to know that the well is working again.

We are so happy to be home and done with Natalie's treatment. I am so happy to see Natalie and Sean playing together again. We are so happy to have wonderful friend and family. We love you all.

We'll continue to keep this blog up until Natalie's considered cured in five years. Thank you all who have supported us on our scary journey. We move on to transitioning Natalie back to normal life and clinic visits. We hope bigger and better things are in store for us around the corner.

Thursday, May 28, 2009

Just a Couple More Days

Natalie's counts dropped a little today to 470, so they want to keep her here to make sure it stabilizes before discharging her. This is typical for Natalie- her trend is to go up and down. They said MAYBE Saturday before we can go home. Nothing is predictable with the counts. All we know is that we have learned to go with the flow of things and that it is impossible to plan anything in this situation. It's still good news for us if we go home in a couple of days. We're just so happy that Natalie is doing better.

We don't really want anything big for Natalie when she does go home. We're thinking balloons, a banner, and a cake with our immediate family just to celebrate this milestone. We'll plan a big celebration for her down the road when she is ready to handle the crowd and has a hearty appetite to eat. All of you who have shared this journey with us will definitely be invited.

So Happy Can't Sleep

Natalie's counts jumped up to 530 today! We are so happy and amazed. Sorry that I wasn't able to share the good news with all of you earlier. The internet connection in our hospital room is really bad so I was only able to quickly send out an email to a list of people that are in my blackberry.

The doctors said we should plan to go home this Friday. Yes, in two days. Can you believe it? I am beyond happy just thinking about all the things Natalie can do again and having our family back together under one roof after months of enduring through so much.

We were just in ICU last week, and then the pneumonia ordeal. We were told to expect to stay at the hospital for a couple of weeks after getting out of ICU. I am still in shock that we may be able to go home on Friday.

I never got to share with all of you how scary it was when Natalie went down to ICU. It was the scariest experience in my entire life as the ICU doctors were pacing anxiously back and forth staring intensely at the numbers on her vitals tracking monitor, and then making a quick decision to operate and take out her broviac line. I never felt so helpless or experienced so much distress as I waited outside the room during the procedure. Then, after the procedure, being told that the next 12 hours are critical for Natalie. "She could get better or get way worse," was what we were told after the broviac line came out. She couldn't eat anything for two days because they wanted to be able to intervene if her condition got worse. It was nerve wrecking as her numbers did not jump as high as they wanted them to the following day and thinking that any moment something scarier could happen.

So going from the depths of despair to incredible news is so surreal to us right now. We will probably cry on Friday. They will be different tears from the tears that were shed when Natalie was in ICU, but we will probably be a teary mess just the same.

Tuesday, May 26, 2009

Counts Are Up

Guess what? Natalie's counts jumped up to 80 this weekend and then up to 160 today! They said that if she continues going up, it is possible that she may be able to go home next week. As Sean would say, "forever and ever." The thought of being completely done with this is so unbelievable to us. I am sure we will cry as much as we will celebrate with all of you.

Of course, Natalie's trend is that she has a tendency to go down a little and then bounce up again for a bit. We are hoping it doesn't go down too much and bounces up really high.

Sunday, May 24, 2009

Standing Up and Holding On

This has probably been one of the toughest weeks for us. We're relying on so many for help to get us through. Never thought we would also be relying on Beyonce and Avril Lavigne to help get us through too. I'm talking about their music of course. A couple of months ago, my friend Margo gave me a cd she put together of songs to help in the crazy journey we are on. On the cd is "Just Stand Up" and "Keep Holding On". Both great songs that are fitting for our circumstances. Natalie loves the cd too.

I just listened to the songs this morning again and they made me cry. Thankfully, nobody came in.

I am reminded that we can get through this and we are stronger than we think.

The good news is that Natalie has not had a fever since Friday night. She has also been pretty active. She wanted Sean and her Po Po to visit yesterday and she also wanted to take a shower. Both good signs that she is feeling better. They took her off one of the antibiotics today and said if she continues to do better, they will start taking more off. She is on so many right now. They are what the medical team refer to as "the big guns".

The challenging thing is that her nose feeding tube got clogged yesterday. They tried squirting cola into it as well as put the guide wire through it to unclog it. No luck. One of the doctors want it out today for fear it may cause an infection. Grant just called to say hold off because he has an idea how to unclog it. We'll see... The nurses said that as long as she eats, she doesn't need it. Natalie ate half a hotdog and some cheese crackers yesterday. She asked for a Costco hotdog and smoothie today. Robin, the only nurse that Natalie will let put a nose tube down her, is not here today unfortunately. It's her daughter's birthday.

Also, with all the events of this week, everyone forgot that the gauze that is on the site of where they removed her broviac should've been removed days ago. The rule here is that a bandage can't stay on longer than 24 hours because of possible bacteria infection. So,last night it took us almost over 1 1/2 hours to get Natalie to remove the gauze so the doctors could take a look at the site. She was crying and wanted her papa. We finally got it off. Actually, Natalie got if off because she wouldn't let anyone do it. The site looks really good. Jenny, the nurse, was going to put a sad face band-aid on it. Natalie stopped her and said, "I want a happy face band-aid." She's such a funny girl. I'm glad she wants her papa though because he is spending the night tonight and she will have to remove the happy face band-aid tonight to let it air again. She has to do this every night until the site completely heals.

We need everybody to please pray for Natalie's counts to start going way up! We've been told that once her counts come, she will be less prone to getting another infection and be able to recover from her pneumonia easier too. The good thing is that her strep seems to be gone. The pneumonia is also really small and in one lobe of her lungs only right now. They think it's the same bacteria that was in her blood that caused the pneumonia.

That's it for now. Here are some of the lyrics for the two songs I mentioned ealier.

"Just Stand Up"- Beyonce
"Everything'll be alright again
alright again, alright again

The heart is stronger than you think
LIke it could go through anything
And even when you think it can't
It finds a way to still push on through

Sometimes you wanna run away
Ain't got the patience for the pain
And if you don't believe it look into your heart
The beat goes on

I'm telling you things get better through whatever
If you fall, dust if off, don't let up
Don't you know you can be your own miracle
You need to know

If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.

It's like we all had better days
Problems getting all up in your face
Just because you go through it
Don't mean it gotta take control, no

If the mind keeps thinking you've had enough
But the heart keeps telling you don't give up
Who are we to be questioning, wondering what is what
Don't give up, through it all, just stand up.

"Keep Holding On"-Avril Lavigne

You're not alone, together we stand
I'll be by your side, you know I'll take your hand
When it gets cold and it feels like the end
There's no place to go, you know I won't give in

No I won't give in
Keep holding on
'Cause you know we'll make it through, we'll make it through
Just stay strong
'Cause you know I'm here for you, I'm here for you

Friday, May 22, 2009

Doctor Just Came In

and the results of her scan shows Natalie has pneumonia. Please pray hard for Natalie again and for us that we can overcome this. We are so tired.

Thursday, May 21, 2009

Roller Coaster

We seem to be on a roller coaster these days with Natalie's health. We experienced a scary plunge on Sunday when she had to go down to ICU, then rose up to a beautiful height Tuesday when we got out of ICU. We've had dips the past few days. She still has a fever that she can't seem to shake. She'll be okay during the entire day, and then get a fever at night. They did a CAT scan on her today and the doctors are looking over the results this very moment as I am typing this. We are hoping that there is nothing serious going on with Natalie and that she can get over these dips and her stomach problems.

Natalie said to me today, "Just a couple more weeks and we'll be done with this mommy."

She has the sweetest voice that melts my heart.

I want to be done with this today. I want to see Natalie laugh, play, and create art. I want to see her run with her little brother and her friends. I want to see her run into our room like she's done almost every morning for years, and jump into our bed. I want to cook with her. I want to go to the Hello Kitty store with her and watch her rummage through every item in that store trying to figure out how to best spend the $5.00 she just got from the tooth fairy.

Natalie has been sleeping a lot the past two days. She gets up for a couple of hours though to laugh, talk, and play. Yesterday, she painted some butterflies from the stained art book that Art and Terry Wise gave her. Today, she played bingo. We also did the "Decoding the Color Mystery" science experiment from the science kit that Grant gave her. She is not listless. She is just trying to get through her tummy pain by sleeping.

We are hanging in there as best we can and hoping that we can come up from this dip soon.

Wednesday, May 20, 2009

We're Out of ICU!

They let us out of ICU last night so we are back on the 7th Floor. We're so happy! Natalie's blood pressure is looking good. Natalie and I both slept through the night last night. We were so tired. We had an incredible nurse last night. Her name is My. She is one of Natalie's favorite nurses and she got to all the beeps on the machines before they woke us up. She's pretty incredible because I didn't hear one beep at all last night.

Natalie is pretty tired and overwhelmed from the whole ICU experience. Her stomach is bothering her still so we are hoping that the antacid they give her will resolve that today.

Tuesday, May 19, 2009

Hoping To Get Out of ICU Today

We have a very nice nurse today in ICU. She is very positive and hopeful that Natalie may be able to get out of ICU today. She is the nicest nurse we've had since Natalie has been down here.

The ICU and the team here is so different from 7Long. They are trained to respond immediately to emergency situations so they don't tolerate any negotiations with Natalie. On Sunday, when Natalie asked if she could wait a little on the IV poke, the ICU doctor said to the nurses on 7Long "You let her negotiate?" One of the nurses said, "Yes, because it helps her feel better." They know Natalie so well up there on 7Long. They know that she doesn't like the procedures and pain that comes with her treatment, but she will ultimately cooperate if you give her a little control. Some things are not up for discussion, but the things that she can control (when she wants to take her medicine, who does she want to do the procedure, who she wants to be her nurse for the day, etc.) they let her decide. When Natalie had to come down to ICU, most of the nurses were heartbroken and felt as distressed as we did. It's great how they have become so much a part of our family through the past months and how much they love Natalie.

In ICU today, they took Natalie off of docamine (the medicine they were using to help get her blood pressure up)in hopes to see her body manage to maintain a good blood pressure on its own. They want to see her blood pressure above 85/50. They also started giving her some nutrition through her nose tube today after two days of not letting her eat anything. They gave her some blood as well and have scheduled a dentist to come out to check the cavity she has to make sure that is not another source of infection besides the strep that has been confirmed.

We appreciate all of you who have been praying for Natalie and those who have stayed up the past few nights praying for Natalie. Please continue to pray that she recovers from this infection and that we can leave ICU.

Monday, May 18, 2009

Infection and ICU

We had one of the most scariest days yesterday since Natalie's treatment. Natalie got a strep infection and had to be moved to the Intensive Care Unit Sunday night because her blood pressure was low all day. They said her body was in shock because of the overwhelming infection and her low counts. They removed her broviac line last night after not being able to get her blood pressure to go up in ICU. They suspect that might be the source of infection and wanted it out immediately. They also inserted a pick line in her for medicine. It was a hard night for us until all the procedures were done. Natalie was so brave through it all though. The night was good for her as her blood pressure seemed stabilized. Of course, she had so many people praying for her that night as well. She was doing so well that they thought she might be able to get out of ICU.

However, this morning, her blood pressure dropped again and they haven't been able to stablize it all day. We are concerned and need as many prayers as we can to get Natalie and us through this. Please pray for us and for Natalie to recover by tomorrow morning so she can go back to 7Long.

Sunday, May 17, 2009


Natalie woke up with a fever of 103 this morning. We've been here before, but it still does not make it any easier. Please pray that it is not a serious infection and that the antibiotics they started on her will get whatever she has.

Wednesday, May 13, 2009

Tummy Trouble

Natalie's counts are low and she is having a hard time tolerating the liquid boost that they normally feed her with. She has vomited at least 3 times in the last two days from the nutritional boost. All three times, her nose/feeding tube came up, but Natalie managed to put it back down her tummy all by herself. The nurses and doctors were really impressed with that. I am not sure how she did today. When I called the hospital, Natalie was asleep and I didn't want to wake her up with too much talking. Grant's parents are with her tonight. They have spent the night with her practically every other night since they've been here. Natalie is sad on the nights they are not with her because she loves doing art and playing with them. They leave on Monday so we are tryig to let her spend as much time as she can with them. We are also trying to get some rest, although both our jobs have been pretty busy.

Just want to put it out there for prayers for Natalie's tummy to be able to tolerate the feeds, or that she regains her appetite so she doesn't have to deal with the feeds. She's been able to take the boost the last 4 rounds, but her body has also been hit so hard with chemo that everything seems harder this round.

Thursday, May 7, 2009

Done With Chemo

We went back to the hospital on Tuesday to continue Natalie's last round of chemo treatment. Today was her last chemo infusion.

Now, we go through a couple of weeks where it gets scary as her counts hit zero again. This is really the part we hate- the blood transfusions, no immunity, and low energy. Natalie's marrow is really tired from all the chemo hits so we've been told that she is not going to bounce back as quickly as her first few rounds.

We are asking for specific prayers for her body to recover quickly and for her little body to be protected from illnesses and infections. Please also pray for us to not get sick either.

Everyone here is trying to help Natalie get through her last round in good spirits. One of the nurses brought in an Easy Bake Oven so Natalie can bake while she is recovering. Another nurse is trying to think of a new craft project for Natalie to do that will keep her entertained. We are all basically trying to think of new things for Natalie to do since she's done practically every arts and crafts project possible.

We are also trying to limit visitors though for this last round because of all the different sicknesses that are out there right now- swine flu, strep, etc. If people would like to write and send her letters/cards, we feel great about that. It would be great for Natalie to finish off her last round of chemo with lots of love. You can send letters directly to the hospital. We are in Room L731.

The Nakatanis

Friday, May 1, 2009


We are home for a couple of days to rest before we continue two more days of chemo. It's been a crazy couple of days for us since Tuesday. Natalie started chemo at 11pm on Tuesday and ended 11 am on Thursday. She didn't eat or drink anything for two days once the medicine started. It was a little scary to see her go from energetic and bubbly to being lethargic. She just wanted to sleep all the time and didn't really want to talk.

She got her shot at 5 pm last night and did really well with it. We definitely have to give a star to Nurse Jane who gave her the shot. She was so quick and good. She was so fast that Natalie did't even have a chance to feel the shot and cry. We numbed her thigh area right before with some ice.

We got home at 7:30 pm and Natalie started having an appetite again at 8:30 pm. It's strange how a change in environment turns her around. She wanted waffles with pure maple syrup for dinner and a glass of milk. Sean and her watched a Pokemon movie together. He was making her smile and laugh by acting out the various scenes in the movie. Nobody lifts up her spirits as much as Sean does. He is good medicine for her and for us. He is pure joy and sunshine.

Natalie woke up happy this morning. She ate a bowl of Honey Nut Cheerios with milk. We are hoping that she continues to eat and get some good rest before we go back to the hospital on Tuesday to repeat what we just did this past week.