Round 6

Round 6 is in the books!!! This completes what they call the induction phase.  Addie did very well, definitely dealt with an upset stomach but overall good spirits!  Reed and I split the time at the hospital which was good again for all parties involved... Definitely a struggle being separated, as a family we aren't suppose to be apart, it isn't natural and my heart feels that! 

What is to follow?!  Scans, scans and tests!  On October 9 and 10th Addie will undergo a full work up to re-evaluate where she is with her cancer!! We are praying hard for NED... No evidence of disease!! That would be a miracle!!  She will have an MIBG scan (scan specific for Neuroblastoma cells), an MRI, an eccocardiogram (to evaluate her heart health... Praying for no damage), another bone marrow biopsy, a hearing test, and a kidney test.  Her MIBG scan must be 95% clear to stay on protocol and advance on to a stem cell transplant. 

It sounds like if her scans are good we will have her stem cell transplant the beginning of November.  It typically takes a minimum of thirty days and she will be sick, very sick from what we have heard!  Addie's stem cell transplant is different from the normal... from what most people think it is!  She is having a stem cell transplant because she needs toxic levels of chemotherapy, so much that if they didn't give her stem cells, her body would not recover and she would die.  The more common reason for a bone marrow or stem cell transplant is because the individual has bad bone marrow or it is infected with cancer cells. Addie's bone marrow has been clear since her second round of chemo and we are praying that it has remained clear.  Addie's stem cell transplant will be with her own cells, this is advantageous.  She won't have the added risk of graft vs host disease and her body should welcome the new cells rather than fight them!  There are obviously still lots of risks and possible complications with this process and we will sit down with a team that specializes in transplants prior to her stay to go over all of them.  This all is up in the air until we see what her scans show!  

This is a very anxious time for us and we have had some increased anxiety because of the longer time between treatments and Addie having some mild back pain... Likely just do to her surgeries but it still gives us a very uneasy feeling that her cancer could be growing!

We have a very long road ahead of us where we will deal with a lot of very scary and nerve racking things.  I continue to pray for God's wisdom to understand the things that we face and I pray for continual strength and protection for our little Addie Bean!!  I will always pray for total healing and a cancer free life for our sweetheart and I pray that I can trust in His will for Addie.  I pray that His will is for her to live. No child should have to have cancer or be sick but He has a plan for all of us, the hard part is seeing that plan and trusting it is what is right!!  Addie is strong and a child of God she will continue to fight this and He will continue to walk by her side, I trust this with all my heart!! 

Please pray that the scans next week are clear!! Pray that Addie can stay on protocol and move on to the stem cell transplant!  Also pray that her back pain would subside to alleviate her discomfort and our anxiety, pray that it is merely a side effect of surgery and not her tumor!  Pray for the doctors and researchers who are working toward a cure for cancer... Pray that the cure is found so no one would have to suffer from this awful disease!!  Pray for funding for cancer research so that way better treatments are developed and implemented! 

And lastly please pray that Addie avoids mucositis this round.  She had it terribly after these medications last time and it would be wonderful to avoid this and to have some much needed time at home!! 

Thank you everyone for your continued love and support!  We feel so blessed and comforted by all of you!!  Thank you Jesus for my sweet Addie Bean and the treatment thus far!! 

Go Team Addie

Two blankets... Can't believe it!! She was so excited!! Thank you again to everyone involved with that!!

She loves to play naughty green witch... She also loves bedtime stories that involve naughty green witches :)

Her pretty prayer shawl that was given to her!

Finally learned to drive the Mini Cooper!!

 

Addie's Blanket

This is random but I had to share!

My sister, Yetti (manages the Facebook page), was here on Monday for Addie's surgery and was really studying Addie's special blanket... The blanket she has had since her first Christmas that she takes everywhere!! It is her prized possession and she is obsessed with it!! She hates to have it washed and usually cries on wash day!! She sleeps with it and smells it... We call it her sniffing blanket!! She does this cute thing where she holds it up to her nose!!  

This blanket was a very random purchase by me for Addie's first Christmas.  Right around that time Addie had started liking to be put to sleep with a blankie by her face.  This blanket was a clearanced item from the Gap and I had no idea at the time of purchase that it would be the ONE... Because it was a clearanced item and because Addie didn't really cling to it until she was a little older there was no chance in my head I would be able to get another copy! 

Aunt Yetti, without me knowing because I don't have Facebook, posted something about Addie's special blanket!  Thanks to some very special people we have know found a few more copies of this precious item! 

I had to share this post with you that she just sent me...

 

How amazing is this?!  Aaron is married to a classmate of mine from dental school who I was basically side by side with all four years, Megan is her name!! I believe there were two others found in Canada one by Michelle Bleimehl, the little sister to one of my good friends from high school, Amanda! And the other was found by Staci Klobnak, one of my sister Sherri's best friends!  

This is another amazing example of the kindness and generosity that we have received!! My heart continues to overflow with gratitude and love for everyone!! I can't tell you all enough how much I appreciate your support of our sweet girl!! 

Addie is doing to be so excited when she sees multiple copies of her special blanket and there will be no more tears on wash day!!!  

Thank you everyone and thank you Gap, quite amazing!!

Her two prized possessions... Blankie and Paci!

Home Soon

It looks like we are finally going to be able to come home :) yay!!!

Addie's surgery on Monday went well, it was long and our Doctor had to work his magic to get the leak fixed but he did it!!! He found the severed duct right away but had a hard time ligating it!! He said he could have easily done it if he would have opened her up completely but didn't want to do that.  He went ahead and ligated her thoracic duct instead, which appears to have solved our problem!!! Praise Jesus!

Since Monday Addie has been perking up, she had a small fever after surgery but since has been fever free and feeling good! We got to spend some time with Grandpa Darwin, Daddy, Emma and Grace which is always wonderful!!

This morning Dr. Potter removed her chest tube and she was unhooked from her tower... FREEDOM!! They will take an x-ray this afternoon and if all looks good we should be able to come home tomorrow!!

It is crazy to say but I am ready for more chemotherapy... Ready to kill the rest of this awful cancer! I have definitely been anxious with the lag between these last rounds!! Please pray that everything has sat dormant and her cancer hasn't grown and it never will again!!! I have also been a little concerned with her hearing lately, she has done a few things that have alarmed me just a bit, please pray that her hearing is NOT affected and it never will be!!

Please continue to pray that all of her cancer is killed and the scans coming up after her last round of chemotherapy will show that she is at least 95% cancer free... Or better yet, 100% cancer free!!!

Thanks to everyone for your continued support!!! Thank you to our wonderful surgeon Dr. Potter, the great nursing staff and the anesthesia team for taking such good care of us!! Thank you Lord for Addie's postive response and for the care she is receiving her at the University of Iowa Children's Hospital!!  

Go Team Addie

Surgery Take 2

Addie just went in for another surgery to try and correct the leaking lymphatic duct.  It was a hot mess around here this morning, communication between the surgery staff (not our surgeon) and the nurses was all over the place!! She is at an increase risk for aspiration due to all of that but still a minimal risk... Please pray that her surgery goes well, NO complications and definitely NO aspirating!! Please pray that Dr. Potter easily finds the leak and can ligate it!! Please pray surgery is quick and she has minimal pain following!! 

I am extra anxious this round of surgery, definitely need your prayers for my sweet baby girl!! I just want to be done with this part and on to our next round of chemotherapy... The lag in time makes me incredibly anxious that her cancer will begin to grow again, prayers that is not the case and it is dead forever!!! 

Thank you all for your support!!

I will so my best at updating as soon as possible!!  Until then pray, pray, pray!! 

Go Team Addie!

An Airhead selfie :)

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!