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 

Round 5

Here we are, round 5 is underway!! So far Addie is doing really well, this round has some delayed nausea so when we go home we may see her get sick!  This round last time she lost 2 pounds and just felt pretty cruddy when we got home!  She seems to be tolerating this treatment better than the last round of the same regimen.

We are nearing a crossroads in Addie's treatment... I have asked a few more questions this round which has brought a lot more fear and worry!! This is why I have avoided any knowledge thus far! For me, ignorance has been bliss!! With knowledge about Neuroblastoma brings a LOT of fear.  It is an awful cancer that brings more death than life, at least in the stage and markers that Addie has!  I believe for her to survive it will be a miracle!  That is why through all of this we have to trust and have faith!! It is His will for her, I just pray that His will is for her to live!  

There are a lot of things coming up for our little sweetie pie!  We have her MRI scheduled for the 26th, this MRI is solely for surgery.  It will show our surgeon what he is up against, which is hopefully a very small and easily removed, dead tumor!  We meet with one of our oncologists and our surgeon the following day, the 27th, and her surgery will be scheduled.  The surgery will likely be the first week of September!  I don't have any details of what this surgery will bring yet.  Following her surgery, she has her last scheduled round of chemotherapy.  However, the end of chemotherapy is nowhere near the end of treatment for Addie, it is merely just the beginning!  After round 6, Addie will have a full work up, all new scans and another bone marrow biopsy!  The scan specific to Neuroblastoma, the MIBG scan, has to be 95% clear in order for us to proceed to her stem cell transplant!  I questioned our oncologist what the biggest concern for Addie was and she said it was the disease present in her bone, mainly her vertebrae!  This will be the hardest area to penetrate and to kill!  If the scans show that substantial disease remains then we will have to go to New York for radiation.  We want to go straight into her stem cell transplant, that is the best case scenario... Please pray for this!!! Please pray that her bone lesions have been killed!! The stem cell transplant is intense but it is also us moving forward and in the right direction for her treatment!  We will be in the hospital for a minimum of 30 days for her stem cell transplant, much more information about this lies in our future!!  

I also questioned our oncologist if she had seen children survive what Addie has.  She said it is very hard and they don't use the cure word until you are 8 years post treatment, but she has one child who had the same presentation that Addie has who is 6 years out!  She said you would never know anything had ever happened to him! Here are a few statistics...They typically only see 2-3 cases per year of Neuroblastoma at the University and it is all varying stages!  Currently, they are only treating 2 active cases of Neuroblastoma and Addie is one of them!  There are roughly only 500 new diagnoses/year of Neuroblastoma in the United States. So to have one survivor that was stage 4 and n-myc is actually hopeful, not discouraging! 

Our biggest struggle is n-myc... It is an awful mutation that makes her cancer cells far more resistant than normal Neuroblastoma cells!! Praise God that up to this point Addie has responded to treatment!! With all the knowledge I have received I just see more and more that Addie's life lies with God... It is His will for her, her life is not in our control!! As scary as that is I have to continue to reassure myself to trust in His will for her!! 

I have a lot of prayer requests, as I always do... 

-Please pray that she has minimal sickness and weight loss following this round.  Also pray that she doesn't get a fever and we can be home as long as possible. Pray that her chemotherapy this round will not bring kidney damage or hearing loss!

-Please pray that the disease in her bone is being killed and that all of her cancer cells contiue to respond to therapy.  Pray that her scans show the disease is gone!!! Pray that all cells are active, not resistant to therapy and are being killed!

-Please pray that her body continues to stay strong and unharmed by the treatment!

-Please pray that our family continues to weather this storm together!! Pray for faithful attitudes and let us not be broken down by fear and worry! 

-Please pray that my baby will someday be free from this and allowed to live a "normal" and healthy life!! 

-Please pray that she is HEALED!

On a very positive and very thankful note... Her kidney function test and hearing test went very well!! Both were PERFECT!  Praise Jesus for that!! Praise God for how amazing her treatment has been and for how well her cancer has been responding!! Praise Him for all the love and support we have received and for the comfort He gives us every day!!

"Normal" Life

Home again... it has been so good! So good in fact, that I have been too busy to update, sorry for that!!  We got home on Thursday.  Addie's counts went way up, way fast :) which we were all quite surprised about, her body has done beautifully at repairing and refueling itself... Thank God for that!!

It took a few days until Addie really started to be Addie again.  Her tongue and mouth were sore for another two days and her attitude was pretty sore also!  WOW, can this little Miss be volatile... I suppose I can't be upset or frustrated, I pray for patience and tolerance... Which the Lord continues to give me, praise Him for that!!  I can't even imagine going through what Addie is and she does it with such grace.  Are all times good and happy? absolutely NOT!  But she is doing far better than I could ever imagine myself doing... she is one tough cookie and I thank God daily for her spunk and that internal fire that she has!!
This last stay in the hospital was very tiring for all of us.  It was a realization of what Addie is going through.  I almost forgot, because life has been so good, that Addie is sick.  She is really sick and the treatment she is going through is torture, literally it is poison!  I am so thankful that things have been so good for so long and I have never been happier than when that naughty little personality came back.  I missed her silly faces, her cute dancing, her sweet voice and all the I love you Mommys... praise the Lord that she is back, I can tolerate her naughtiness when it is mixed in with all of her sweetness :)
I realized how hard it is for both Addie and I to be apart from our family... I knew it was hard on me, aside from seeing Addie sick and the fear associated with that, it is the hardest thing for me to deal with.  I LOVE being a Mom and I love being with my girls, all of them.  It is what brings me joy; where I get my happiness.  When I am separated from them it is awful.  I realized this time in the hospital that Addie too has a very hard time being away from the rest of her family.  Her mood is drastically different when her sisters are around... I love how much they love eachother.

The time at home has been great, as it always is.  There is so much healing in being home :)  We have spent our time just being a family and enjoying eachothers company.  Addie did get to take a trip to Target, her first one... her counts were 10x's that of a healthy persons so I figured it was an okay time to venture out.  However, she was covered in santizer :)  It was like she was at Disney World, she was so excited to be there.  Reed and I spoiled her a little!

I wanted to share a small victory that occurred today... We got Addie a little bounce house last year for her birthday and have not had it out this year.  We have asked her a few times if she wanted to set it up and she would say, "No, bouncy house hurt my back!"  Well today the bouncy house is out and she jumped and jumped and not a word about her back :)  God is so GOOD!!

The treatment is working and she is responding.  I find myself getting scared that the treatment will stop working and Addie will once again be in pain or that the scans will show her tumors have started growing... I have so much fear, I hate it... I pray and I pray and most days it is very well managed, always there but NOT affecting me. I consider this  miraculous because of how much of a worrier I am.  Please help me pray these fears away... Prayer requests for our sweet Addie Bean

-Pray that after this fifth round her scans show MIRACULOUS shrinkage of her tumor
-Pray that her surgery would be minimal and that all tumor cells are REMOVED and dead.
-Pray that her body continues to be strong and impermeable to the toxic chemotheraphy... her urine has been cloudy, please pray that her kidneys are functioning properly.  Her heart rate has also been slightly elevated at times, please pray that her heart stays strong.
-Pray that she feels good this round of chemo... this is the harsh one again (they all are, but this one is most nauseating), please pray that her attitude stays positive despite all the negative she has to incur.

We have scans after this round of chemo for surgery, which would be in the beginning of September if all is well.  She also has another hearing test and a kidney test.  Please pray that ALL tests yield good results.   This round of chemo is the one that can affect her hearing, also damaging to kidneys. PLEASE Lord let her scans show that her cancer has shrunk MORE!
And as always... PRAY for COMPLETE healing, pray that all cancer cells are killed so that they may never come back.
Today I was talking to Grace about riding her bike in the street, she asked when she could.  I said when your 13 or so?! ( that sounded like an ok age?!) and Addie said, "Mom, when I 13 I ride my bike in street too!"  Lord, please let my little GIRL grow up, please let her LIVE!!

Go TEAM ADDIE!!

I had the pleasure of having a spa day at Addie and Gracie's Salon... They do great work :)

Please no judgements for the song she is singing...  I had to share because it shows her personality so well!