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!

Fever

I just wanted to ask for a few special prayer requests... I just spoke with Addie's oncology team and they are concerned that she is still spiking fevers, it is a definite possibility that something is hiding somewhere!  Please pray that she doesn't have an infection and if she does that we are treating it with the right medicines!!  Also please pray that her platelets would begin to support themselves!!  And lastly please pray that here organs will make a full recovery so that she will be able to stay on protocol and undergo antibody therapy!  

Thank you for your prayers... I so appreciate them!!! 

Please God continue to heal my sweet baby... Cancer free for an eternity with healthy organs!!

Go Team Addie!

Day +19

Today is a good day... Addie has officially turned the corner and is headed down the road to recovery!!  She is doing so much better, still exhausted and sedated, but is doing miraculously well!!  She is off of her BIPAP mask and is breathing perfectly on her own!  They have her on a little bit of oxygen just to give her heart some extra help!  She has not needed dialysis for the past three days and her kidney numbers have not worsened!!  She is making urine and we have been doing lots of potty dances!!  They removed her urine catheter today, which I was ecstatic to see go!!  It was convenient but a definite risk for infection!!!  She is shedding her skin :) which is a normal part of transplant but otherwise looks great!!  She is very weak and still sleeps most of the day!  They are allowing her to drink water and suck on Popsicles which she enjoys!!  They continue to feed her through a tube in her nose and intravenously and she is tolerating all of that very well!! 

Addie has another eccocardiogram tomorrow... Please pray that her heart has made a full recovery and that she can be off of the heart medicine!!  Her BP has been a little finicky the past few days and the doctors feel it is mainly due to her kidney function... Praying that those kidneys continue to improve!! Pending her heart and her kidneys, we may be able to move downstairs very soon... I don't like to get ahead of myself because you never know what the day will bring but we are definitely closer today than we were yesterday :) she is definitely moving in the right direction!! 

I can not describe how incredibly thankful I am that my precious baby is healing!!  It really is a miracle that she is here today and doing as good as she is!!  I have heard multiple nurses tell me that it isn't often that they see a transplant child go back downstairs after being in the PICU. I just had a nurse tell me that it is truly amazing that Addie was extubated (taken off the ventilator).  She told me that the majority of transplant patients that are intubated do not survive!!  Wow, did that make my heart shake... It made me sad, scared and unbelievably happy all at the same time!!  I am saddened for those families that have to say goodbye to their precious children.  I am scared that Addie could still regress but I am so incredibly happy that she is still here with me today!!  I just said to Reed that I almost feel more anxious now... Scared that once again the floor will drop out from beneath us and that we will once again be close to losing our baby girl!!  But then I step back and remind myself to not fear but REJOICE in this moment!!! I push the fear and worry out and instead fill my heart with gratitude to Him, thanksgiving for saving my sweet Addie Bean!!  He is the reason that she is here right now... I felt Him in this room with us, healing her and comforting me!!  Thank you Jesus, for your unfailing love and your miraculous healing power!!  Thank you for these wonderful doctors and nurses and for giving them the wisdom to save my child!!  I hate that I feel nervous at my excitement and happiness and I hate that my tummy is rumbling right now writing this post.  I hate that the devil puts fear in our minds and is whispering to me right now, "Mandie, don't be happy in this moment because Addie may still not make it!"  I say forget that nonsense, I will trust my heart where Jesus resides and I will push those fears aside and give thanks for this moment!! 

Each day brings us closer to recovery and closer to Him!  Please continue to pray for Addie's body and her fragile organs.  She continues to run fevers sporadically, please say a prayer that she will NOT get an infection and it is merely her body recovering and working to support itself... Please Jesus NO infections!  Addie still faces a long journey to conquer this but I know that she can do it... No doubts that my baby will be victorious!! 

Go Team Addie

“But Jesus looked at them and said to them, ‘With men this is impossible, but with God all things are possible.’”

Matthew 19:26

Addie in her squishy bandages to make her mask more comfortable, taking a break from her BIPAP to see how those lungs would do on their own!

Daddy wasn't going to shave his beard until Addie came home but the second she woke up and saw that furry mess she put an end to that... Thank you Addie!!!  She is the boss of the family!!

Smiles Today

God is so good!!  Look what we got to see this morning...

That smile is back, our little Addie is doing so much better... Praise Jesus!!!  At about 1:30 AM she turned the corner and her lungs started doing better!!  Her chest X-ray this morning looked much better and her kidney numbers are stable, which is miraculous considering how much diuretics they gave her through the night!!  The diuretics are working and she may not have to have dialysis today!!!  The swings in either direction up here are intense but this swing brought lots of happiness to room 5!!! 

Big win for Team Addie 

Day +16

"A life full of praises and thankfulness becomes a life filled with miracles.  Instead of trying to be in control, you focus on Me and what I am doing." 

Thankfulness in times of trial is not an easy task.  However, the more I find myself thanking him the more peace and reassurance I feel!!  Even the simplest of thank yous brings happiness to Him!!!  No matter what we face and no matter how hard the day seems, if we open our eyes and our hearts wide enough we will see the many blessings our Heavenly Father bestows upon us!!!  

Today has been one of those days full of doubt... Did we make the right decisions?! Is Addie going to recover, can her organs be healthy once again?! Is this going to set us back in her cancer treatment?!  So many fears and so many unknowns... Every day I have to force these thoughts out of mind.   I remind myself to look to Him for the answers, I tell myself that tomorrow doesn't matter, to enjoy today and I reassure myself that He will never forsake me!!! I have to continuously tell myself that His will for Addie is great and perfect, I have to contine to trust in His plan for her!!  I force out the fear, swallow my anxiety and I give thanks... Thanks for another day with my beautiful girl, for my family and my three wonderful girls, for the amazing people who continue to pour out their love and support upon us and to Him for never leaving my side, for holding my hand and hugging my heart!!  Honestly, if I were walking this path alone I would have given up long ago, it is hard, so hard and it hurts... But He is there!!! 

Addie was taken off her ventilator today!!! We were so anxious to get that tube out and to have our girl back!!  Unfortunately, getting that tube out did not make for an easy day, quite the opposite actually! Addie's body is so responsive to any little imbalances, especially her lungs!! She continues to have an issue with pulmonary edema (fluid in her lungs) which is what made her coming off of the ventilator a little tricky!!  It is still very unclear as to what is causing Addie to retain fluid, why it happened and why it continues to happen. Please pray for this, pray for clarity and for healing!! Pray that Addie will continue to improve and the fluid will diurese and never return!!!

Currently Addie's lungs are being supported by a BIPAP machine.  The BIPAP works by forcing air into Addie's mouth and down into her lungs!!!  She looks like Darth Vader :) and I am told it makes her feel like she is sticking her head out of a car window going about 20 mph.  She is tolerating it very well and so far it has kept her from needing to be re-intubated!!  I have heard multiple times tonite... "Addie is one tough girl, I can't believe how well she is tolerating that mask!! And I can't believe she is breathing so effortlessly despite how bad her lungs look!" (Both reassuring and nauseating all at the same time!)  This is the first time the PICU has really been able to see that Addie Brenden gusto, they are definitely seeing who is the boss!!!  I thank Jesus that Addie is tolerating the mask and that it is helping her... It was very touch and go as to if it was going to work but so far so good!!! Praying, praying that continues!! 

Each minute up here feels so uncertain and at any given moment things change!!  I am so thankful that Addie continues to improve but there are definite moments throughout the day that I worry she may regress... Praise God this has not been the case!!!  I am so hesitant to say we are past things when there are still so many unknown factors but what I do know for now is that Addie's heart is improving and the doctors are extremely happy.  She doesn't have VOD yet and hopefully never will!!  She is off of the ventilator with significant help from the BIPAP.  Her kidneys remain on the outs and are being helped with a three hour hemodialysis treatment each day.  The kidney doctors hope that her kidneys will make a full recovery and the ICU doctors are hopeful that her lungs will eventually heal.  The doctors tell me these things take time and of course nothing is certain!!  I can't say that we have an over abundance of time because of Addie's cancer protocol but we can only do what Addie's body will allow!!  

Today I am incredibly thankful she is here, holding my hand and saying "momma"... Thank you Jesus so much for allowing me to hear that sweet voice!!! I pray that Addie continues to improve each day!!  I pray that she stays hopeful!!  Soon enough it won't matter why this happened because it will all be gone... A miracle in the making AKA, Addie Lynn Brenden! 

Happy Thanksgiving Team Addie.

Getting some much needed sister love before her vent was removed! 

Goosie and our little Darth Vader!  :)

Thank you to Jannelle Wilks at Main Street Sweets for making these for our family and the staff here at the hospital... Hands down BEST cookies ever!!

Also thank you to the Mudd Group, their wonderful employees, Ashley Thompson, and the Zimmerman family for the amazing thanksgiving meals we received!!! 

Also thanks MerriLee for the beautiful quilt and for visiting!  What a thoughtful and meaningful gift!  

This Thanksgiving was something special because of all of you and because of the wonderful people we shared it with! 

Day +14

My devotional has continued to be about thankfulness and tonight it said...  Draw near to me with a grateful heart, and My Presence will fill you with joy and peace.  It also said if you practice thankfulness consistently, negative thought patterns will grow weaker and weaker, and if you are busy being thankful you don't have time for worry or fear... Thank you Jesus for these words, for putting exactly what I need to hear in front of me!  I could sit all day and worry... There are so many things to fear and stress about as Addie's future remains so unclear!!  Oddly, I continue to find myself at peace, and not consumed with worry!!  My former self would not have been so... I was that girl who worried about everything and anything!!  I was that mother that felt like I had control over everything, the text book satellite Mom.  I felt that if I were near nothing could harm my babies.  Well here I lay in the PICU on day 22 post transplant with my precious baby on a ventilator... How is that for a loss of control?!  It was control that I never had, that never belonged to me!!  Talk about a reality check... I thank God for that reality check... Would I have preferred it in a less tragic way, not the punch in the gut that I received?! Absolutely!!  But I was blind and perhaps a suddle slap in the face wouldn't have done the trick!!!  As awful as this is and as much as it hurts to see my baby sick, I am so thankful for this new awareness, for His Presence! It is so true that when we need Him, He is there!!  He is always there!!  It is a feeling that is indescribable, to have so much hurt and feel so much love all at the same time!!  I have NO control over anything but what I do have is the ability to pray and trust in Him.  I trust that his control is far better than mine, he loves Addie even more than I!!

Tonight I am incredibly thankful for the knowledge and technology that we possess and for the amazing doctors and nurses that care for my sweet Addie Bean!!  I am so grateful for this machine that saved my daughters life...

Praise Jesus for these things... Thank you Lord for giving my baby another chance at life!  I continue to pray that I will watch her grow.  That I will be able to walk her to kindergarten and enjoy her sporting events.  That I will see her in her beautiful prom dress and some day move her into college!  I pray that someday she makes me loads of grandbabies!!  I pray for these things almost daily... There will be no greater gift to me than for me to raise my babies, and watch them grow into beautiful women, women of God!!  I know Addie's journey will bring glory to God and our team is making His wonderful name known!!  

Hallelujah for another good day... A great day!!  Addie was taken off of her dialysis machine today to see what those little kidneys of hers will do!! Praying for pee, pee and more pee :). If her kidneys do well and the fluid balance is regulated than we should hear that sweet voice again in a day or two!!  I can't wait to hear that voice, see that smile and kiss those big lips!!

Please continue to pray that her liver stays unharmed... Today was a good liver day!  Also pray that her platelets will take hold.  She has been burning through her platelets (1-2 transfusions/day).  Historically, platelets are the last to take residence in the bone marrow so it isn't uncommon what Addie is experiencing. However, platelet wasting can also sometimes be an indicator of liver injury and VOD, praying that will not be the case!! 

Please Jesus let us see that smile soon...

Go Team Addie!