Good with the Bad

We got some really good news this morning about Addie's biopsy... The mass and other biopsies taken were 95% dead!! That is amazing, really positive!! I haven't had a chance to speak with oncologist yet about what that means but it is definitely positive news!! She is still draining too much, spoke with surgeon this morning and it would likely heal on its own eventually but it is unclear if we have the time to wait... He said something was probably cut during surgery and that going in could be like finding a needle in a haystack! We need to do her chemo soon, while the tumor is still responsive, can't wait very long or it can grow again and metastisize!  Our surgeon was going to speak with our oncologists and see what the time frame was and determine if she needs surgery or if we can wait longer!! 

Thank you God for the wonderful news about her tumor and for the chemotherapy working!!  Please let the drainage stop and let there not be a need for surgery!! Please let our time frame be favorable for killing the rest of this awful cancer!!!

Addie got to meet a few Iowa football players this morning and was filmed by ESPN U... They said it will be on TV next Wednesday!  

We got to see the rest of our family yesterday... So much better when we are all together!! Addie perked right up and it was a great visit, they can sometimes be more stressful than positive!! The Lord knew we needed some sister and Daddy time, especially Mommy!  

The girls got some great Frozen hats made by one of a Aunt Sherri's friends, Nicki!! Thanks girl, they absolutely loved them!! So sweet of you!!

And one last selfie Addie took last night!!! 

Complication

There was a complication with Addie's surgery that was discovered Monday night.  She is having lymphatic leakage likely due to the lymph nodes that were removed, but it is unclear exactly what the cause is.  She had a chest tube placed for drainage and it has not been working properly and today her x-Ray showed that she was collecting fluid in her chest.  Today she is getting a new chest tube placed.  The doctor is hoping this will collect the fluid adequately and will allow them to better gauge the amount she is losing.  If she continues to lose fluid she will have to have another surgery to locate the problem.  Many prayers are needed... Please pray that the drainage will stop on its own and that she will not require surgery.  Also please continue to pray that she stays infection free.  Pray that her chest tube placement is smooth and without complication.  Thank you!

Surgery

We said goodbye to Naughty Randall today... Now we are praying that someday very soon we can say goodbye to Neuroblastoma and have our baby girl free from all of this!! 

Surgery today went very well!! The surgeon said he had to look for the mass when he got in there... A drastic difference from the first time he saw it!! He was aggressive in the removal of the mass and felt that he was able to get most of it!! There was an area that went into her vertebral foramen that he wasn't able to aggressively remove for fear of damaging her spinal lining.  He took a biopsy of that area and said it could have just been normal nerve tissue.  We are praying that is the case!! She recovered from anesthesia very well, not angry and not sick!!! The instant we got to our room she wanted to eat and eat she did, NONSTOP until she fell asleep just now!!  So far her pain is being managed well with the pain meds, please pray that continues!  We will be here until at least Wednesday and then hopefully home for a few days to recover before her 6th round of chemotherapy!  

Please pray that her pain stays managed and that she doesn't get an infection!  Also please pray that her biopsies show that the tumor was dead and no active cancer cells were present!! 

We come to a crossroads very soon in her treatment! There is a lot of anxiety and fear in all of that but I am so thankful for today and having her primary tumor gone!! I am so thankful for the way she has responded to treatment and for how faithful Our Heavenly Father has been in all of this!!! Please God let her scans show that she is 95% cancer free, or better yet show no evidence of disease!! Please let us stay on protocol!!  Praise God for my sweet Addie Lynn, for her strength and her courage... She can beat this and we will rejoice in His name when she does!!! 

Thank you everyone for your continued support and prayers!

Patiently waiting... Glad to have my family with us for distraction and for good company!! Thankful that Grandma Carol and Grandpa Darwin were able to take care of everyone back home!!! Thank you Jesus for our amazing families!!!

One tough girl... We love you Addie Bean, keep fighting little sweetheart!!! 

Go Team Addie!

Life is Good

How amazing have the last three weeks been?! Unbelievably!! 

-We received wonderful news about Addie's MRI!

-Addie didn't get a fever and we have been home since last discharge... Even with us all coming down with terrible colds and her having a UTI!! Praise The Lord!!

-Addie is feeling good and didn't lose any weight this round!  She hardly threw up!! 

-Her counts are up which means no more shots!! She can resume a "normal" but not so normal life :) We of course went straight to HuHot (Thank you Brad and Marie for the gift card... So sweet and the perfect gift for Addie!)

-We were able to go to Clear Lake for the first time this summer!!  That is typically our summer getaway and with everything that has been going on we haven't been there at all!! It is extra special for Addie... She was up there four days after she was born and basically every weekend after!!  It is our home away from home and it was nice to be able to go and enjoy!!

-We were blessed with the amazing Kris Walters' Golf Tournament... Marie you truly are an amazing woman and I can't thank you enough for what you did for our family!  A special thanks to Melissa and Heather and all others involved in organizing and funding the tournament!! Also thank you to all who participated in honour of Addie!  We are truly blessed, our hearts overflow!! 

-We received the funds raised at the Pleasantville benefit... Unbelievable!! I can't believe that my little home town of Pleasantville, IA was able to raise that amount of money!! Thank you to all who donated and gave money to our Addie Bean!! Thank you for supporting our family through this with your love and prayers! I am so proud to have been raised with such kind and generous people!  Go Trojans!! 

-We were again blessed by two little sweethearts that had a bake sale for Team Addie!! A big thank you to Ella and Audrey for all your hard work at the bake sale and for your sweet hearts for wanting to support Addie!!  That is the second bake sale in Addie's honour... Jake and Zach were the first, sweetest boys in town!! 

I am once again overwhelmed at the outpouring of love we continue to receive!  We are so incredibly thankful for everyone's generosity and support!!! I want to thank everyone who has fed us over the past three months... The meals have been such a blessing and so delicious!!!  I continue to be in awe of how giving and kind people have been to our family!!! Thank you... XOXO

We have a lot of things coming up in the near future!  Unfortunately, we enter reality once again on September 8, when Addie has her surgery!  The surgeon is hoping for a minimally invasive procedure and feels confident he will be able to remove all of Addie's primary tumor!! It is likely a minimum of three days in the hospital and that all depends on the outcome of surgery and how Addie is feeling!  Her hemoglobin and platelets as of Monday were low, so it is still unclear if her body will be 100% ready for surgery on Monday.

As usual I have quite a few prayer requests and I appreciate all who continue to pray for Addie!! I believe that our prayers and faith in our Heavenly Father is the sole reason Addie has tolerated treatment so well and her cancer has responded so positively!! Please Jesus let this continue!! I pray daily that His will for her is to LIVE and to grow!!! I pray that glory is brought to Him through her battle and victory over cancer!! 

-please pray that her body produces plenty of hemoglobin and platelets and come surgery day she is healthy and her body is prepared to mend itself!

-please pray that surgery is minimal and that there are no complications!! Pray for our surgeon, Dr. Potter.

-pray that all of the tumor is removed and that it is dead, no live cells remain or are present!

-pray for a quick and speedy recovery!! No infections and no pain!

-pray that after round 6 of chemo she is cancer free and her scans all show a "normal," healthy 3 year old... No evidence of disease!!! Those are the four words I want to hear for the next 8 years until it is changed to, she is CURED! 

-pray that we can go straight to stem cell transplant following round 6 and Addie will never fall off of protocol!! Pray that her cancer always responds to treatment and no resistant cells remain and no new cells develop!!

-as always... Pray for complete Healing!!! And pray that He breaths strength into her body and shields it from any damage!! 

Thank you everyone!!!

Go Team Addie

She has been very into dresses lately... The fancier the better and she adores her rain boots, even if it is 100 degrees outside! 

Ella and Audrey at the bake sale.

Motorcycle ride with PapaCycle!! 

Playing school with her big sister!  She loves to right her name and then tries to write others!! 

Wearing her hat like Buckwheat... She just loves Little Rascals!

Good News

Once again God is so good!!! We received amazing news yesterday better than I could have imagined!!! The original plan was that we would have the scan yesterday and then meet with the doctors today but thanks to a great recovery room nurse we were able to meet with our surgeon yesterday!! That was such a blessing :) I was anxious about having to go all night without knowing what the scan showed!! 

The scan was very positive, her tumor was again smaller! So small in fact that the surgeon said he had to look for it :) that is a drastic difference from her original presentation!!  Her spinal canal is untouched and he said it appeared to be in an easily accessible area!!! He is expecting to do the surgery in the next week or so... Depending on her counts!! 

More details to come... Crazy day today being a Momma!! 

Addie has been feeling so good today... Please keep praying her counts rise and she stays fever free! Thanks for all you prayers!!!

God is so good!!! We are so thankful for the response Addie has had to treatment!! We feel truly blessed!! Praise God!!

Go team Addie!!!

Big Day

We are in the car and on our way to Iowa City for Addie's MRI.  There are a lot of nerves circulating the car but we are hopeful that once again we will receive positive news about Addie's cancer.  God has been so good to us throughout treatment, praise Him!! 

Addie gets better everyday, yesterday she really started to perk up.... Lots more smiles!! I miss that smile and spunk but when it returns boy does it feel good!!! Her counts were checked yesterday and everything is low!! She is getting a blood transfusion today following her scan.  The biggest prayer with that is that the antibiotic is taking care of her UTI, with no immune system her body can't fight anything!  Please God fight it for her!  I pray we caught everything in time and she will be able to remain home and fever free! 

Funny story if you all don't mind a little TMI... Addie as we all know is incredibly stubborn, which I am so thankful for (most days)! :) She hasn't gone poo for over a week and I told the nurse that yesterday.  I have been giving her medicine with no success so the Dr. said we would have to stay overnight today to receive some medicine that would definitely get the job done!!  I told Little Miss that and in no more than ten minutes she was in the bathroom going!!! Yay, praise the Lord!!!  

On a more serious note... Prayers in this area would be nice for her!  She has struggled with constipation since infancy and it can be quite painful for her, which explains why she avoids it!

Lots to pray for as always... Biggest thing today and right now is that her scans show improvement, miraculous improvement!!! A tumor so small they have to hunt for it in the scans, so small perhaps surgery won't even be needed!! Please pray that treatment is continuing to kill this awful cancer!! Pray that surgery is minimal with few risks and complications!! And last but not least please pray that her infection is gone and we are in the clear with all of that!! Pray her counts rise quickly!

Please Lord continue to shield and protect my baby from this torturous treatment!! Gracious God heal her... Please kill every cell in her body and let her be free from all of this!!  Please give us all positive attitudes and help us to keep our eyes directed at You!!! 

Prayers Please

Addie has a little something going on with her urine... Going to doctor now, please pray that they will determine what it is and it will be easily treatable!! Also please pray that she begins to feel better, she has felt pretty cruddy since being home!!

Also pray for this rain to stop so all those golfers can have fun!! Marie and Melissa you girls are amazing!!! I can't tell you how thankful I am for you and everything you are doing for our family!  Thank you for everyone who is supporting our little Addie Bean!! 

Go Team Addie