Check Mark

Radiation is DONE, hallelujah!!  Another check off of the list!!  Addie breezed right through the treatments and the last 5 she actually did without any sedation :). She seriously is the bravest girl I know... If she sets her mind to it she can do anything!!  To set the scene... Addie was in an enormous room by herself, no windows, with a huge machine (we called the camera) that moved around her, and her only contact with me was through an intercom system!  Her treatments took about 10 minutes and her hands were strapped above her head, her chin was taped up, she laid on a very rigid pillow, and her feet and hips were belted.  She passed the time listening to me read books or tell her mommy's made up stories through the intercom... Thank goodness I had the world's greatest Mom who told the best stories, I am able to dig deep and remember that once vast imagination I had... My Mom to this day can still tell the best stories!!  I am sure the radiation and sedation teams got a kick out of Addie's requests for naughty monkey stories and stories of dragons with tooth aches!!  I was able to watch her through a camera and did my best to read her lips and understand her demands :). 

I don't know why I doubted her, I really thought she would need sedation for all of the treatments because of her intense separation anxiety but she rocked it!! She said she was going to do it and she DID, without a tear or hesitation, that is my girl!! 

Other than the driving, which Addie tolerated far better than me, radiation was definitely the easiest part of this whole process!! Praise God that she was able to get the lower amount of radiation required and only a few treatments!  The effects of radiation are long term and it can really do some nasty stuff but we are hopeful that because she had a lower dosage that she will not be affected... Please Jesus let that be so!!  Our radiation oncologist, Dr. Buatti, is a very nice man, so knowledgable and extremely calm and reassuring.... Once again the Lord provided us with a wonderful medical team.  The entire radiation and anesthesia crew were a delight to work with and did such a nice job making us all feel comfortable!  Addie graduated with honors :).  Praying hard that the radiation knocked out any lurking Neuroblastoma cells... 

Home continues to be great.  It is so nice to just be...be a family in our own home with our daughter who minus her adorable bald head and a few extra tubes is PERFECT!!  I continue to struggle with anxiety and fear in what lies ahead... But it has been far less than what it was at my last post!  At night when it is just her and I, (I don't think she is ever giving Daddy his spot back in bed) she always wants me to rub her back and as I rub her back, where the awful tumor was that started this nightmare, I can't help but worry and doubt... But of course the devil would try and rob me of these perfect moments.  Two months ago we found ourselves in a spot where we didn't know if Addie would survive the day and now here she is, lying next to me, telling me she loves me to the heavens, in no pain and perfectly "healthy" and I am going to worry... No, no... I am going to REJOICE and be glad in this moment and give so many THANKS!!  Thank you Jesus for these moments and for this precious time you have given Addie to heal and for us to reconnect and refuel!!  Please fill this time with peace, hope and LOVE and continue to block out the worry and doubt... I read in my devotional to give thanks for what lies ahead, even before it happens and even if what lies ahead appears to be rough!  By always giving thanks it allows us to see the blessings that He is continuously pouring out upon us!!  This is another page out of my devotional that spoke directly to my heart... So encouraging!! 

Thank you Jesus for always giving me what I need to keep going, for the constant encouragement and strength!! Thank you Jesus for my precious baby girl... I love her to the heavens!!  

We are currently enjoying a little time off... Addie will visit the clinic every two weeks and she remains on her heart medicine and diuretics.  She was able to get the feeding tube out on Weds... Yay, praise Jesus!!  Her blood pressure is still on the high end of normal and we will be meeting with the cardiologists to re-evaluate her heart health at her next clinic appointment.  Our main squeeze and my number one girl, Mary, thinks it is best to give Addie as much time as possible to heal before we start the next step (antibody therapy).  The protocol allows 200 days post transplant to start antibody therapy, we will likely begin evaluating Addie around day 100.  Antibody therapy is a BEAST and extremely intense, it is done in the PICU because of the possible adverse side effects.  Due to Addie's reaction with transplant, our team is a little more anxious about her going through antibody therapy!  Antibody therapy is a must... It drastically improves Addie's long term survival rate!  I will be sitting down soon with Mary to discuss all of the details of antibody therapy.  One thing I need your help with over this next month is praying for clarity for Reed and I on the upcoming decisions we will be making for Addie's treatment needs.... Also pray for total healing for her sweet body (heart and kidneys) so that she is ready for the next step!  Thank you for your amazing support and love!! As always we appreciate you all so much!!  Please keep the prayers coming for my sweet girl!!  

Breaking a few rules here... But sister baths are the best!!

Celebrating sister's pinkk... She loves to ask Grace as soon as she comes home from school what color she got on and then insist on seeing it... Just to make sure she is telling the truth :)

Our little Moonchild... One of her faves, Neverending Story! 

What we would do to pass the time... Shooting baskets!

I so missed that other cheek :) I love seeing her without that feeding tube!! Not a tear was shed when that baby came out, and she has been taking all of her medicines like a champ!

Nothing like a big sister massage!!

And as you may have noticed... The paci is back in full force!!  Definitely my fault, but I swear it was an accident!

Life Lately

Life is good... So good!!  It is crazy how the good moments can almost bring as much anxiety as the life changing ones!!  There is a battle going on inside of me at all times... I am constantly fighting off the worry, anxiety and fear!!  It is safe to say that I would be a HOT mess without Jesus... I honestly don't know what I would do if He didn't walk with me, if He wasn't there to boost me up when I felt depleted and to encourage me when I was sad!!  It is truly amazing to know that we are never alone, never forgotten and loved more than we can even fathom... That brings me hope in my darkest moments!!  

I have been struggling a bit more than usual lately with worry... I really think it is because things have been so good!!  It is like I am waiting for everything to once again drop out from beneath me!!  I also think it is because I am home and home is busy!  The hospital is hectic but there is usually downtime, where as being home there is zero downtime... There are always things that I can find that "need" to be done!  This gives me far less time to sit and be with Him... to pray, to read, and to learn.  I really think that is why lately I have been feeling a bit more down... Life sneaks in and pushes Him out!!  I read in my devotional that it is so easy to see Him in your most needy moments, in those life altering times. It is in those "normal" everyday moments that He is often forgotten... And that is so true!!  He is never forgotten with me but He definitely takes the back seat at times to my role as a mother and a wife.  That is consistent with who I am, never taking time for myself!  I view my time with Him as precious time to myself but time that I unfortunately fail to take some days!!  I need to take that time, because time with Him should be my number ONE priorty, that time makes me a better mother and wife, it makes all aspects of me better!!  He shouldn't receive the used up and tired me or get the leftover time when everything else has been done... He should get the fresh, eyes open and ready to rock Mandie, that is what He deserves!!!  I am sorry Jesus.  I am sorry that there are days when You are the last on my list and that I don't take the time to just sit and be with You... please forgive me.  I want so badly to think of you in every moment and to see You in all that I do!!  I am so thankful for this time at Home... This time to be a family, but I pray that it will also be a time to grow in You! 

Where are we at with things... We are knee deep in radiation!  We go every working day to Iowa City for radiation!  Addie has 12 treatments and we just completed her sixth treatment today... Yay to being half done!  They really have been uneventful, it takes about 10 minutes total but because Addie needs to be sedated we are usually there for about two hours!  We leave here around 6:30 AM and we are typically home by lunchtime!  The drive is definitely tiring and Addie and I both do NOT love it, but it is better to be home... Worth the three hour drive to sleep in our own bed (yep, just our bed... I don't know if she will ever sleep without me again, someday maybe :)).  It is crazy how something as major as radiation seems so minor.  It is this huge, scary, cell altering process and it is completely uneventful... You don't even know anything is occurring!  Addie has a few sharpie marks and stickers on her body but otherwise you would have no idea anything is happening!!  Another example of how truly amazing she is... She has underwent now 6 cycles of chemotherapy, 3 surgeries, a stem cell transplant, and 6 cycles of radiation and she is still my Addie... She comes home and wants to play, dance and sing her music!!  Wow, is our God good!!  What this 3 year old has been through is truly remarkable, she has endured what no one should have to and she does it without a second thought!!  Thank you Addie Lynn Brenden for being so brave, so strong and so perfect!!  I can't say it enough how blessed I am to be your Mother!!  I get to hold you and kiss you every single day... I get to rub your tickle spot, tell you stories of dragons and naughty witches, play Candyland, sleep with you, rub your soft bald head, dance with you and listen to your beautiful voice tell me you love me to the heavens...   Wow, am I lucky!!!  

We have more to come but it is unclear at this time what that will entail and if her body will allow it...  As always the future for Miss Addie Bean is uncertain and she is going to have to fight every day of her life, luckily with Him there is no doubt she can do it!!  The future will forever be unclear and I am doing my best to TRUST that what lies ahead is what is right!!  What He has planned for us is perfect...  Great relief and comfort comes in trusting that!!

Prayer requests... Please pray that Addie's heart is healing and will make a full recovery!  Please pray the same for her kidneys!!  She continues to be on medications for both of these things!  No one knows if her heart will be "normal" again but I am praying that it will!!  

Please pray that her body will fully recover, remain cancer free and be able to protect itself for the rest of her LONG healthy life!  

Please pray that the next step of treatment will go smoothly for Addie... That she will tolerate it well and that we won't face the same obstacles we did after transplant!

Please pray for clarity for Reed and I... Pray that He would show us the right choices to make in regards to her medical care!! Pray that those choices would be obvious!  Pray that we would always know what The Lord wants from us as her parents and earthly advocates!  

Please pray that the side effects from all of this horrific treatment are minimal and no long term side effects will cloud this sweet girl's future!!  

And lastly... Pray for safe travels as we drive back and forth to Iowa City!! 

Thank you everyone for your continued support and prayers!!

Go Team Addie!!

"As for God, His way is perfect; the word of The Lord is proven; He is a shield to all who trust in Him."

2 Samuel 22:31

Loving on Grandpa... Wearing his glasses!

Her and Daddy making protein shakes with the new Ninja :)

She still thinks it is summer out... Always asking to go outside and play :) She keeps asking me when it will be warm again!!  

Enjoying a healthy snack :) after radiation!

Fun in the waiting room... We have played a lot of "I spy" in there!

Thanks Liz and Kyle for the NYE stuff... The girls loved it!, such a great idea!! So sweet of you :)

Showing off her big muscles!

Some much needed family time... Mommy and Daddy made a last minute decision to go for family dinner... Making sure every Brenden family member was healthy of course and her mask was on!   The benefits greatly out weighed the risks!! 

First shower... This girl was a shower addict before those tubes were placed!!  This was her first shower in 7 months and she LOVED it... She has showered every day since!   She has finely made peace with cling wrap, who knew it had this use too?!

Just beautiful :)

So Much to be Thankful for

We had some pretty amazing people make this holiday so special!!!  Addie coming home was the best possible gift ever... A gift straight from Him!!  We had some amazing people make our best gift ever even better... As I have said in the past, there is no possible way that I could thank everyone enough for their incredible generosity to our family!  It makes me want to be such a better person... I see people go above and beyond for us and I so badly want to return those favors!! I wish there was someway I could show my thankfulness more... My heart overflows again and again!!  

Thank you to everyone who sent gifts, letters, cards, money, gift cards, and food to the hospital and to our home!!!  Thank you to everyone for the inspiring comments and love!! 

Thank you to the Regis Middle School 8th graders for the special gifts... I left the room for five minutes to get food and I came back to Addie covered in bows and opening a huge box of presents!!  She was in heaven!! 

Another thank you to Oelwein's FFA... They brought around gifts to the children in the hospital, boxes of them!  What a sweet group of kids, thank you so much!!!

A special thank you to the Children's Cancer Connection for helping make our Christmas that much more special... The gifts and gift cards were just perfect for our family!!  Thank you to the families who sponsored us... I felt like you knew our family personally by how perfect the gifts we received were!!  

A huge thank you to the Black Hawk County Sherrif's Department for sponsoring our family this Christmas and getting all of us such amazing gifts!!  What an amazing site walking into my house and seeing our tree overflowing with gifts from the amazing people who keep our community safe... We should be the ones getting you all gifts! So special!!  The girls loved everything they received and the smiles that morning and giggles were unforgettable!!  

A very special thank you to the wonderful people here at the Hospital who nursed my baby back to health... Thank you for going above and beyond and for loving our Addie Bean!!  You truly help make us feel at home, and we always feel so taken care of by you!!  

Jessica (Jekika) we love you so much... I always feel right at home when you are our nurse!!  You make that home sick feeling go right away!! Thanks for loving our baby and taking such good care of her and us!!  You are a wonderful nurse and we feel so blessed to call you ours!!

Naughty Veronica... We love you and don't know what we would do without you!! The hospital wouldn't be the same without our Naughty Veronica!  You became a part of this crazy family the second you found Addie's green bike, you didn't know what you were getting yourself into :)

Erika... Our beloved night nurse!!  Thank you for bringing such fun to the long nights in the hospital!!  You are a wonderful nurse... Thanks for taking such good care of our Addie Bean!

Dr. Kate... Our ICU resident!!  We will forever remember you and the ICU team, you saved our sweetheart's life!!  There will never be words to tell you how much we appreciated all of you and what you did!!  Dr. Kate you will do great things, the love and passion you have for medicine is so amazing... Many lives will be saved by you!!  

Kayla, our physical therapist!  You were so persistent and so sweet... Always patient and never rushed or irritated by Addie's demanding ways!!  Thank you for helping our girl walk again!

Dr. Potter... No picture yet :). You are number one in my book!!  I would be having an anxious moment and you would enter the room and make it all go away!!  Thank you for your calming presence and your caring spirit!!  We feel truly blessed to have had you as our surgeon... It was you who removed that awful tumor that was killing our baby!!  You are a hero in our book and the best surgeon around!!  

Mary (Murray).. I love you Mary!!  We aren't done with you yet :)  There will be many pictures of this wonderful woman to come!!  Without you I don't believe I could make it through this whole process!!  It was you who we wanted during our toughest moments, you bring such peace to our hearts and I feel that you truly love our little girl!!  It was you who said, just look at her... She will make it through, and praise Jesus she did and she will continue to!  You are such an amazing woman!  I honestly don't know what I would do if I didn't have you to go through this process with!!  I missed your calming and caring presence during transplant and I am anxious to get back underneath your umbrella of expertise!!  Thank you for continuing to check in on us and for always making yourself available... You are one special lady and we love you!!

We have been touched by so many wonderful doctors, nurse practitioners, nurses and other medical professionals during our stays at the U, I wish I could have a picture of all of them!!  We can't thank you all enough... You will forever hold a special place in our hearts!! 

We are truly blessed to be surrounded by such amazing people both at home and at the hospital!!  It was a remarkable Christmas, one that we will never forget!!  Thank you from the bottom of our hearts!!

Go Team Addie... This team inspires me to be the best Mom I can be.  You bring me hope when I feel down and you show me day in and day out that this world is full of remarkable people!!  

"I thank God every time I remember you. In all my prayers for all of you, I always pray with joy."

Philippians 1:3-4