Update

We are still at Covenant and Addie is still pretty miserable with this mucositis!  Her counts are still low but are slowly coming up!  Her scans and tests are Thursday and Friday this week.  I spoke with Iowa City today and they would like to try and get them done if we can and I agreed, I just want to have them done and know where Addie stands with her cancer involvement!! Praying so hard... Please Lord let this cancer be gone and let us stay on protocol!!!  Praying also that her tests are all normal and no damage has been done to her precious little body!! Her back continues to bother her at times and I can't help but worry... I hate that I worry, I continue to try and pray it all away!!!  I have to trust in Him fully, He is and will always take care of her!

It is unclear as of right now if we will be able to have her scans Friday because of the mucositis, it may be too risky to sedate her with the sores.  The plan is to get transported to Iowa City tomorrow and have her tests completed on Thursday.  The sedation team will evaluate her and determine if it is safe to sedate her on Friday for the scans!  She has never had any complications thus far with sedation but we definitely don't want to take any chances!  

Covenant has been wonderful, they treat us so good here!! The staff really goes above and beyond to make us all comfortable!! We appreciate them and Dr. Van Sickle greatly, so thankful!! 

Gracie's 6th birthday is tomorrow... Such a bummer we will be separated but we are doing our best to still make it a wonderful day for her... She is so deserving of a special day, just for her!! She has been amazing through all of this!! All of our worlds were turned upside down and she has handled it wonderfully... Praise Jesus for that and so many other things!! 

Please pray for those counts to rise and the sores to disappear as quickly as they came!  Please pray that she will be HEALED!! 

Go Team Addie

A few smiles yesterday!! 

Mucositis Round 2

Addie started running a fever yesterday morning so we are currently at Covenant.  She definitely has another bad case of mucositis and the fever is likely due to the fact that her counts are obsolete!! Once her counts rise, her sores will go away and we will be home once again!!  She is such a tough little girl, makes my heart hurt to see her suffer like this but she is tolerating it like a champ... Like she always does!!  They are taking good care of us here at Covenant!! Praying for a speedy count recovery, no infections and home by Gracie's birthday on Wednesday!!  

Then we will head back to Iowa City on Thursday and Friday for tests and scans... Just want that to be over with!!  Please continue to pray for good news and good results!! 

Thanks everyone for your prayers!!!  Lots of Love!!

Even in pain she can still show us that sweet smile!!! You are precious Addie Lynn Brenden!

Prayers

Little Miss has a sore mouth... She woke up this morning complaining of her tongue hurting!  Please pray that this will resolve quickly and a fever will not coincide with it!! It is highly likely that a fever will develop in the next 24 hours (if history repeats itself)!  She was miserable after this round of chemo last time, I was/am praying that she would avoid the really awful mucositis this time!! Her counts are very low and until they rise the sores will persist!! Please pray that it is a mild case of mucositis this time and that her counts rise quicker than ever!!

Thank you everyone!!

Insisted on dressing fancy... Looking beautiful but definitely not feeling like herself!!

Anchored in Hope

We received a very special package in the mail today from Regis Middle School in Cedar Rapids!  It melted my heart and brought tears to my eyes! I want to say thank you to each and everyone of those sweet 8th graders that took the time to make Addie a card, write those sweet messages and pray for her!! And a very special thank you to their teacher and my cousin, Merri Lea.  That was so kind of you all and it meant so much to all of us!! 

will forever be anchored in hope!! 

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