Day +30

Wow, what a good day!!! Hallelujah :). I can't even describe how good it has been... I am smiling from ear to ear as I write this because for the first time today I saw my girl feel GOOD!!!  So amazing!! I even got a kiss on the lips... I am in heaven!!!  Praise God!!! 

Addie was taken off of the ventilator this morning without any complications!!  She was in a great mood... Talking, playing with her sisters and being Addie :). How incredible it was to hear that sweet voice and see that one of a kind personality!!  I actually got to hear that Momma, momma, momma stutter that she does... Melts my heart!!!

They have been weaning her oxygen throughout the day and she has been tolerating it very well!  Her chest X-ray improved some this morning and surprisingly her platelets have maintained... First day in over 3 weeks Addie has not required platelets!  Praise Jesus... Praying that her numbers will look even better tomorrow!!  So far all the cultures and tests from the bronchoscopy have been negative.  We are still waiting on the bacterial cultures!!  In some ways it would be nice to have a diagnosis so we could treat whatever is causing this, only then could we know it would be definitely be gone.  I just don't think that is going to happen... I really think Addie prefers to keep us guessing!!  I am not convinced we will ever have an explanation for any of this and frankly, I really don't care!!  What does it matter if in the end my baby girl is healed and all is as it should be... It will only be that much more miraculous and let's be honest, she is MIRACULOUS!! It appears that she is doing better?!  We never really know with her as she likes to knock our socks off and then make miraculous recoveries, little stinker... But today she is better, FAR better!!

Today I really heard the Lord saying, "Mandie, TRUST me!! Trust in My time; she will heal." His time being the key... I got a real sense of clarity about that tonight after reading my devotional!!  My devotional (Jesus Calling, Enjoying Peace in His Presence by Sarah Young) said that hurry is not in His nature and that often the longer we wait the more our enjoyment intensifies!!  I have learned that waiting and watching is not something the medical profession is overly comfortable with.  Hurry and treat is more their comfort zone!!  I really believe The Lord is telling us to just breathe, step back and give Addie time.  Her body needs rest without being pushed or driven!!  That amount of time is unclear and completely out of our control!  She will heal in His time... 

Thank you Jesus for your presence and for your peace, once again you comfort my anxiety and hug my heart!!  Thank you for giving us this day... this beautiful day with Addie feeling good!!  She only had one episode of nausea, truly a miracle!!  She was taken off of the ventilator and the next hour she was blowing bubbles with her sisters, sitting in her princess chair and coloring... Amazing is an understatement!! 

With all of this being said, I still don't trust my little GUSTO girl!  Thankfully what I do trust is far more powerful!! Addie may still have a few tricks up her sleeve... Maybe she is paying me back for something?!  She did hate that NG tube I made her get :) joking!!  

Addie, sugar cakes... Mommy has had enough of these ups and downs, I am ready for you to come home!!  

Go Team Addie!!  Prayers for continued improvement and her feeling good... total HEALING!!  

"Let your hope make you glad.  Be patient in time of trouble and never stop praying."

Romans 12:12

"Have patience, God isn't finished yet."

Philippians 1:6

We went from this...

To this... I have to say it again, God is so good!!!

The tiger twins... Addie sitting in her princess chair showing Sissy how to breathe into the spirometer!! 

Our Christmas tree... Decorations made by Gracie and Grandma!! Absolutely perfect!!! 

Day +29

Today was another trying day, filled with more I don't knows?! And uncertainties... The story of our life this past month.  

Why did this happen and why is it continuing to happen?!  What caused her heart to not function properly and can it make a full recovery?!  These are the questions being asked for which there are no answers. Some clarity would be awesome.  I know the doctors want to find a cause and solution so badly... I think it is beyond their realm of thinking that this could just appear without cause and disappear without reason.  I don't think the doctors feel it is impossible, I just don't think they believe it will happen... But we know that miracles do happen and Addie has got this :).  I will continue to believe my theory until proven otherwise and I will continue to believe with a 100% certainty that Addie will make a full recovery... That is what my Momma's instinct is telling me!  I still feel that "ulcer" nagging my stomach here and there throughout the day, that chronic uneasy feeling in the pit of my stomach... I don't know when that will go away?!   I wish I could describe it better, anyone who has gone through something similiar to this knows exactly the feeling I am speaking of.  I should name it... I just call it my ulcer and continually pray it away!!  I really feel that the cause of this will not be clear but pray that the resolution is great.  That Addie will be HEALED and free from all of it... heart failure (diastlic dysfunction), respiratory distress, kidney damage and CANCER!!  In Jesus name I pray!!!! 

My devotional tonight was unbelievable... I can't wait to read it each night because I know His words will give my heart exactly what it is looking for!!!  It is incredible how He always finds a way to center me, to put everything in its place and to give me peace.  He continually  reminds me that it isn't my job to figure this out and that it isn't in my control!!!  He always lets me know that He is here and that it is going to be OK, she is going to be OK... Better than ok!!  My only job is to love her and trust Him, He will take care of the rest!!  Thank you Jesus!  

I know it is hard to read but I had to share... Don't feel obligated to read it and sorry for the poor picture.  For those that take the time to read it, I pray it gives you the comfort it has given me!  

On a high note... This morning before Addie had to undergo her bronchoscopy she was feeling and acting better than we have seen her in a long time!!  We enjoyed her sweet voice and precious smile!!  Her breathing was better than it had been and she just appeared to be feeling better!

Her bronchoscopy and GI evaluation went well.  She did come back from the OR intubated because they were worried that due to the fluid that was injected into her lungs for the bronchoscopy she could have increased respiratory distress.   They felt it safest to leave Addie intubated for the night!  The plan is to extubate her first thing tomorrow morning!  Prayers for this and that all will go well!! Prayers that we will never again have to see our sweet girl on a ventilator!! As scary as the ventilator is, it is so nice to see Addie rest peacefully tonight!  Her body worked so hard the past two days to breathe and I think a little break will hopefully only make it better for her!!  Even ventilated Addie still managed to help me decorate the room, pointing to where she wanted things hung up!  She was also able to get and give a few Frozen tattoos :)!  

Please Jesus make Addie well again... Please don't ever let us be in this place again, let her continue to climb that hill to recovery!!  

Go Team Addie!

From a card we opened today (thank you for the sweet and amazingly thoughtful gift)...

Every day God thinks of you.

Psalm 68:19

Every hour God looks after you.

2 Thessalonians 3:3

Every minute God cares for you.

1 Peter 5:7

Because every second He loves you.

Jeremiah 31:3

Day +28

One minute you are nearing the edge of the woods and the next you find yourself in the heart of it!  Seriously, when is this roller coaster going to end?!  It gets harder and harder to witness Addie struggling on this road to recovery! Praise Jesus for my little fighter and her strong will!!  Watching Addie lie here working to breathe is a reminder of how tough she is... She just pushes through it, refusing to let anything overtake her!!  It makes my heart hurt that I can't help her, physically help her!!  I feel at times so helpless... We as Mothers are designed to protect our children!!  We are supposed to comfort them when they are sick and make everything ALL better!!  The moment that child is born you will do anything for it, sacrifice everything... And here I sit in a hospital room watching my baby girl struggle and there is nothing I can physically do to help her!!  Talk about feeling helpless... But then the Lord steps in and reminds me that I am not alone and I am far from defenseless, with Him all things are possible!!!  What I have the power to do is pray... Pray that He will heal her, comfort her and continue to breathe strength into her little body!!  

When I am weak, He is strong... Thank heavens for this!!  Please Jesus get Addie past this, get her HOME with us... Allow me to be her mother, to raise her and to LOVE her endlessly!! 

Lots of prayers for tonite and into tomorrow... Prayers that her lung function will improve and the fluid in her chest to vanish!!  Prayers that her body will once again be able to maintain itself and regulate the fluid it requires!!  Tomorrow if Addie's lung function has not improved she will have to have a bronchoscopy... This procedure in itself is pretty minimal but because Addie is not a "average" patient everything comes with a heightened risk!!  It will take place in the OR and she will likely have to be intubated once again!  They will get a sample of the fluid in her lungs and determine of there is an infectious component causing all of this!  Everyone is searching for answers and I am just praying it will all go away... That once again He will make her well!!  Please Jesus give these doctors your wisdom, please don't allow there to be anything missed.  Please give us clarity as to what is causing this and what needs to happen to make her better!!  Thank you for always listening Lord Jesus and for the peace you place in my heart!! 

Thank you all for walking along this road with us... For your continual prayers!!  Your loving words fill my heart with hope and love!!! I will say it again... Hands down, best team in town!!  Go Team Addie!

"Do not fear, for I am with you; do not be afraid, for I am your God.  I will strengthen you; I will help you; I will hold on to you with my righteous right hand."

Isaiah 41:10

"I have heard your prayer; I have seen your tears.  Look, I will heal you."

2 Kings 20:5

Day +27

Well team we find ourselves back in the PICU room #5!  The place we have called home for the past 21 days!  Our time on 3J was short lived this go around!  Fortunately, our move here was not emergent but merely precautionary!  After a very good morning of seeing Addie awake, having our favorite nurse and having fun in the bath, things started heading a bit south!  Around 11:30 this morning, Addie's oxygen saturation levels started decreasing and her respiratory rate began increasing!  She started requiring oxygen to keep her SATs above 90 and it was pretty obvious that she was working harder to breath.  I immediately became concerned because the symptoms were similiar to what sent us to the PICU the first time!  The oncology team also showed immediate concern and got the right people involved  stat!  Our doctors ordered an eccocardiogram, a chest x-ray and blood tests to check for multiple infectious processes. In addition to the sudden respiratory distress, Addie also started running a fever last night.  She almost made it 48 hours fever free!  It remains unclear as to why she continues to run fevers and it is a major concern for the oncology team!  They have thrown around the idea of needing to do a CT scan to see if they can determine a source of infection...  They refer to it as a fishing expedition.  Doesn't that sound reassuring?! Not!!! I don't love to fish!!

The chest x-ray today showed that Addie once again had fluid in/around her lungs.  This explained the sudden difficulty in breathing.  It is questionable at this point if she is retaining fluid or if there is a possible lung infection of some kind causing the fluid?!  The doctors so badly want a reason for all of this so they can do something about it, or at least have an explanation!!  I just continue to pray that no infections are present and that this too will go away as quickly as it came!!  

Great news came with Addie's eccocardiogram, it looked good!! Praise Jesus!!!  Mommy's tummy was in knots awaiting the cardiology fellow to share the results!  As of right now, Addie's heart is functioning as it should... Hallelujah!!  Another positive that deserves praise is Addie's kidneys are functioning well and she is responding nicely to diuretics!  I would say at this point we are in a better place than where we were the first time we found ourselves in the PICU!!  

Thank you Jesus for the PICU... We got up here and a sudden calm came over me!!  I am comforted knowing that Addie is being watched closely by so many!!! 

The plan right now is to give Addie diuretics through the night and pull off as much fluid as possible.  A new X-ray will be taken tomorrow morning.  If the x-ray remains suspicious the doctors will likely do a bronchoscopy to check Addie's lungs for a viral or bacterial infection.  

Reed and I are definitely on red alert and I definitely feel like we are overdue for some good news... News that will answer our questions and give us peace for Addie's future!!  I know Addie will be victorious in the end... I feel that, He has reassured me of this but the road to get there is still pretty cloudy, that is the area in which I pray for clarity!!  I just continue to pray that He would ease our anxieties and in those stressful moments that He would give us a gentle reminder to look up and breathe. 

Addie's body remains extremely reactive to the slightest changes or fluid shifts.  She can swing in a positive or negative direction at any given moment!  Addie needed another platelet and blood transfusion today, her hemoglobin (red blood cells) had a large drop from yesterday... I am beyond ready for her bone marrow to recover!  I continue to pray for total healing for my sweet girl... Prayers for her to feel better and for her body to be able to once again self regulate!!  She is one miraculous little babe and Jesus has shown that He is fighting this battle right along side of her... He isn't going to let anything get in her way of beating this!!  She is definitely keeping us on our toes and me on my knees in prayer!!  That girl is always giving us a run for our money... She couldn't do anything half way!  I am beyond ready for this to be done and for Addie to feel better... I so badly wish I could just make her feel good again, but amazingly I don't hear her complaining... Not ever!  That is our girl :).

Prayers Team Addie, we need them!! Lets get our girl home!

Day +25

Today is a GREAT day... Addie moved back down to 3 JCP!!! Rejoice and give praise to Jesus!!!  

We will definitely miss the wonderful doctors and nurses in the PICU... They took such wonderful care of all of us, I really can't say enough good things about their team!!  We were in such great hands, thank you Jesus for the wonderful care we received!!!  Prayers for all the patients and families that remain in the PICU... May The Lord heal and spread His strength, peace and comfort to all!!! 

God is so good. Addie is doing much better... Her organs continue to heal and grow stronger each day!!  Her kidneys and liver are stable.  We should have another eccocardiogram in the near future to recheck her heart but as far as the doctors are concerned her heart is doing great!!  All of her organs are doing better and the doctors appear to be very pleased.  Her blood pressure is high and she is on a couple of BP medicines.  This is likely do to her kidney function and her body getting reaculmated to kidneys that work but it is alarming and we would love to see that go back to normal!  

I have learned that doctors in general are all fairly pessimistic (they say realistic) and rarely give very much reassurance but as far as I can tell by my constant prying and questioning Addie is doing great.  She is definitely doing better than any of our doctors dreamed she would be, especially considering how bad she was!!  I think Addie has shocked the socks off of most of the doctors in more than one way... She definitely made believers out of those that weren't already!!  That is what life is all about... Bringing people to Team Jesus and I think Addie is doing a pretty good job at recruiting!! :) 

We are back in the big room... It is even more amazing after being in that shoe box for 21 days!!  I am hoping to put up a Christmas Tree and bring some Christmas cheer to my little sweetheart!  Addie continues to feel really cruddy and I am praying that this will just disappear as everything else has... I really want more than anything for her to just feel better!! Please pray that she would begin to feel good!!  Please continue to pray that her organs would make a full recovery and lastly that she have a long cancer free life!!  

We will likely start radiation next week, more on that later!!  I have to get back into that Momcologist role... I had a slight vacation from Neuroblastoma!!  Ha, a vacation full of life threatening events!! Praying hard that was our first and last experience with life threatening events!!! 

I pray that God continues to work miracles in my sweet child's life and that glory will come to Him in her survival and magnificent defeat of this awful cancer!!!  Addie can do all things through Christ who gives her strength... My version of Philippians 4:13. 

Go Team Addie 

Day +23

What day is it?!  Haha... That is honestly how it feels?!  I rarely know the time, day of the week or the actual date... But what does that matter anyways?! :)

I would say today was definitely a good day!!  Addie is still having blood in her stool but it has slowed down quite a bit, praying that it will soon be gone!  She tested positive for the rotavirus, a virus that attacks the intestines and causes vomiting and diarrhea.  It is a self-limiting virus and Addie will be able to fight it off on her own, it may just take her a bit longer than the average person!  It is unlikely that the virus alone caused the large amounts of blood in her stool but it definitely didn't help matters!  The doctors don't seem overly concerned about the blood as long as it continues to slow... It is likely still her body trying to heal from the chemotherapy!  All of Addie's blood cultures remain negative but she continues to sporadically run fevers.  It is unclear as to why this is happening but it is possible her fevers are from the virus her body is fighting (I am praying that is the case and that no terrible infection is lurking somewhere)!

When I say that it is day by day here I really mean that... One day we think all is well and the next day we get bombarded with bloody diarrhea!  Yikes!!  The good news is that Addie is far better than she was last week and the week before!  She looks more like herself and I even got some real smiles today and a few games of "I spy" out of her!  She is pretty reluctant to talk and sleeps most of the day!  She is off of all of her IV sedation medicines and is now only on oral medications.  They will continue to taper her oral sedation meds over the next week or so!  I am hoping that the less sedatives she gets the more Addie I will see :).  She is still feeling pretty crummy but I would say today was better than yesterday, not as much vomiting!  It was so good to see that smile tonight, a real smile!!  I also got to see that ornery little glint in her eye... Slowly but surely my baby girl is coming back to me!!  

The longer we are apart as a family the harder it is, especially for my Gracie girl.   She really misses her Mommy and her little sister.  We all miss our family time and our life at home.  However, despite the 31 days we have been away from home, I continue to feel connected and thinking positively!  This truly is the power of prayer... He gives you what you need and what I need is to feel close to my husband and to my girls!!!  I definitely long to be under the same roof as all three of my babies again... We aren't designed to be apart!!!  I praise Jesus for keeping my heart full, full of wonderful memories of when we were together and full of hope for our future together with Addie HEALTHY!! 

Here is some advice from a girl who was basically stripped of every coping mechanism she had...  I realized my coping mechanisms only worked if the end result was in my favor and my daughter getting stage 4 Neuroblastoma was definitely NOT in my favor!! 

Enjoy the time you have with your family... It is so easy to get caught up in work, cleaning the house, and all of those tasks of daily life that sometimes the really important things are missed and taken for granted!!  Each moment spent together is precious, and those little things that we stress about take our eyes off of what is truly important... Him!! The more we direct our eyes to Him the more He opens our eyes to the wonderful blessings He has given us here!!  It isn't about the quantity of time we spend together it is about the quality of that time!!  I have said that for years as a working Mother and that statement reigns even truer in this place I find myself now!  The chores can wait, the house can stay dirty, to heck with exercising (who likes that anyways) because Momma needs to enjoy her family... That is how I wish to spend the rest of my life!  I may have to seek therapy to rid myself of this OCD and clean house obsession (for those that know me and see my crazy anxiety in messiness) but I am going to actively try to never let life blur what is really important!!!  It isn't that I took life for granted before it is just that I didn't realize how precious the life I had was!!  I see now that there is no point in worrying and having anxiety over things we can't control... How liberating to give up that control!!!  What we can control, for those control freaks like myself, is the time we spend with HIM and the energy we put into building our relationship with Christ!!  Here is to a new coping mechanism, Jesus!!!

Go Team Addie... Prayers for clear stools, no more fevers, no infections, healthy blood pressures, a healthy heart, happy kidneys and a HAPPY Addie Bean!! 

Addie enjoying music therapy 

Day +21

What a day... I swear this roller coaster we are riding up here can send a Mom to the Loony Bin :).  I am going to say all in all today has been a win... We definitely had a bump in the road but overall still climbing that hill to recovery!!  The bump... Addie is having blood in her stool.  I'm not talking about a tinge of blood in her stool, it is straight blood (sorry for that visual)!! It is quite alarming and it is unclear as to why it is happening!!  As of right now, the doctors are chalking it up to intestinal mucositis and I'm praying that is the case.  I don't know why that would still be the culprit but it would definitely be the best case explanation!!  Please pray that whatever is causing this bleeding will subside and that her blood counts would begin to maintain themselves!!  I would really love to not have any more bumps in the road... I feel like Addie has overcome enough for this round and she is more than deserving of a red carpet to finish!!!  Please Jesus lay out that red carpet and let my girl sail through the rest of this cancer treatment business... Thank you Father for continuing to support us through this, for your continual strength and your unconditional love!!! 

They continue to wean Addie off of her sedation medicines and once that is done it sounds like we will be able to go back downstairs!  I am not sure what the time frame is for us to be able to come home?!  I think there are still too many unknowns at this point to discuss that!! Her fever has been better this afternoon!! Yay!!! :) Thank you Jesus!! I am praying that her fevers would stay away for good... Fevers are scary and usually mean something bad is happening so it would be great if they could just go away.

My Addie girl loves to keep the doctors on their toes!! It seems that she doesn't really like any of her symptoms to have a cause she just likes them to appear and then miraculously disappear :). Praise Jesus for the disappearing part!!! 

Addie is definitely dealing with a pretty bad tummy ache and has thrown up quite a bit!! I am told this is normal post transplant for Neuroblastoma patients and it could stay this way for months... I pray that is not the case for Addie!!  She has been through the ringer and I would love for her to start feeling better... I seriously can't describe how incredibly strong and resilient she is... She is such an inspiration!!  

Addie  is definitely back to her old bossy ways and is making sure she keeps me in line... I have heard far more yells than I love yous but I will take anything :) I love that gusto and that fight!!!  Daddy came to visit and he was showered with kisses and I love yous... I know mine are coming!!  It is Mommy who tortures her and makes her do everything the doctors and nurses want her to do... I just remind her that Mommy is only trying to make her better!!  I did get to hold her for a bit today which was so nice... I miss that so much, being able to hold her and carry her!!  I just love her so much!! 

She decided that she loves apple juice today... Uh oh, juice is a big no-no for us dental folk :)  I suppose I can let it slide for now!!  

She has yet to ask for her paci... I haven't brought it up even though there is a part of me that wants to see her with it again!!  For the longest time that paci has brought her so much comfort!  When I think of my Addie Bean I see that paci and her special blanket!!  Just last month Addie told me she was taking it to kindergarten with her :).  I just keep reminding myself that she is 3 and 1/2 and absolutely should NOT be sucking on a paci... Maybe this is the end for paci?!  

Tomorrow is a new day... Praying it is a great one and thanking Jesus for this one!!! Each day spent with this girl is a WIN... No matter how it was spent!!  

I love this... 

The ultimate protection against sinking during life's storms is devoting time to develop your friendship with Me! 

And what a friendship it is!!! 

Go Team Addie!