The Next Step

We are nearing the next major step on the protocol... Stem cell transplant!  Praise Jesus that we are on protocol, I don't know if I fully appreciated that until I just wrote those words!  Praise Him for so many things... The cancer is responding and here we are six months into treatment with NO EVIDENCE OF DISEASE and home enjoying being a family.  

What lies ahead is quite intense for all of us and especially little Miss!  She is going to be bombarded with intense chemotherapy, it is going to blast any remaining cancer cells and unfortunately also her normal cells.  We are going to watch her get very ill and stay that way for some time.  There are many risks both short term and long term with a stem cell transplant, risks that unfortunately we have to take.  Addie's radiation doctor said it best... Addie's biggest risk is the cancer she has currently and it could kill her long before the risks associated with treatment could.  We are exposing her to multiple things that cause secondary cancers (certain chemotherapy medicines and radiation) but those exposures are necessary in order to kill the awful cancer she is fighting now... Neuroblastoma doesn't mess around, it hits with a vengeance and is in it to win, unfortunately for Neuroblastoma we are too and we will NOT be defeated!!!  Addie is strong and her body has shown that it is resilient and can bounce back, she wants to LIVE and LIVE she will!

We go to Iowa City on this coming Monday (November 3) and will be checking into the bone marrow unit for at least 30 days!  Addie will undergo a weeks worth of intense chemotherapy which will cause her counts to plummet to a point of no recovery.  On November 10 (my birthday) Addie will be given her saved stem cells back (they were harvested and froze after her second round of chemotherapy) which starts what is called the stem cell transplant/bone marrow transplant!  Her cells are given to her in order for her body to recover, her body would never recover on its own from the intense chemotherapy!  Addie's type of transplant is "easier" in the sense that they are her own cells (autologous) so she won't have to deal with Graft vs Host Disease which can be brutal and have intense side effects and complications!  Addie is still going to face some pretty scary side effects and will be very sick from the chemotherapy but it is a blessing to not have that added risk of rejection!  Addie's stem cell transplant is needed because of the amount of chemotherapy they need to give her not because her bone marrow is cancerous or infected... This is different from the typical reasons bone marrow transplants are given!  Some patients celebrate the day they get their new stem cells or bone marrow because at that point they get a new cancer free system, likely from their brother, sister or a random donor that they matched with!  In Addie's case we don't get that exciting "yay, new cancer free bone marrow!" but we are comforted that her body will be able to mend itself after the brutal chemotherapy and that she doesn't face the risks associated with rejection!  The protocol Addie is currently on recommends stem cell transplant to kill any microscopic disease remaining and the research shows that it improves her 5 year survival rate, without this and later radiation treatments, her chance of survival was pretty bleak! Both of these treatment protocols come with a heavy set of precautions but we are urged by doctors to follow through with the recommended protocol to give Addie the best chance of survival!  

Many prayer requests for Addie and our family as we face this next step... We will be in the hospital basically the whole month of November.  Reed and I will be dividing our time between the hospital and taking care of our other two little sweethearts!  This is going to be a very trying time for all of us but I know with lots of prayers, faith and positive attitudes we will make it through this! 

The prayer requests...

1) No life threatening complications or infections... Addie will be at a very increased risk for infection and because she will have no immune system.  A common infection to us could be life threatening to her!  It is also possible for her to get something called VOD, which is a deadly liver toxicity that there is no treatment for.

Also pray that the chemotherapy would not cause secondary cancer... One of the types of medication she will get increases her chance for AML by 10-15% 3-5 years post transplant!  Another medicine also causes additional hearing loss, please pray that her hearing doesn't get any worse!

2) minimal side effects and a speedy count recovery... Please pray that her side effects will be minimal and short lived!  It is likely she will be sick for at least 2 weeks but sometimes kids are sick for more than 4 weeks!  She will face severe mucositis, nausea, diarrhea, other GI troubles and others!! Please pray that her body welcomes her new cells and they integrate quickly so that she can recover!! She will likely have a feeding tube and we were told some kids struggle to eat months after transplant, please pray this is not the case for Addie!

3) Pray that we will stay positive and hopeful... Pray that we will always feel united even though we may be apart physically!  Pray that the time apart would strengthen us.  Pray specifically for Grace and Addie... Pray that they would always feel eachothers love and that the separation would not cause sadness and despair!  Grace is already having a difficult time with what is to come, please pray for comfort and peace upon her, pray that He would give her wisdom beyond her years to understand that this is just temporary, please take her fears away!

4) Pray for good weather and safe travels, as we will be in the car quite often over the next month! 

5) and lastly for now... Pray that we would all stay healthy so we can be around Addie!! 

Thanks for all your love, prayers and continued support!! We would love to receive letters from you or pictures that your children have drawn while we are in the hospital, we would love books or hand written stories... Anything to pass the time!! I am sure grace would be delighted to recieve these too while she is at home!!  It would be great to decorate Addie's hospital room with encouraging words and drawings by those supporting her!!!  I'm not sure of our hospital address but once I have it I will let you all know... Our home address is 5115 Addison Drive, Cedar Falls, IA 50613.

We are truly blessed to have such an amazing support system!! 

Go Team Addie!

Life

Life at the Brenden house has been incredible...  It is so good to be home and having Addie feel so good!!!  Addie has been in great spirits, it is so good to see her... The real her!! It is such a blessing to see her happy and healthy!!  It is so hard when she isn't acting good to know whether it is the cancer and it's side effects or if it is her being a naughty three year old!! This past week has shown that it is at least 95% the cancer and it's side effects (that other 5% is all her :))!  She is so happy, content to play with her sisters and herself, happy to spend time with her family and just adores being home!!  When she isn't feeling good it is all Mommy and nobody else is allowed in or near her!!  It has been good for all of us to see this Addie and it brings me such hope in what lies ahead... I am going to have this Addie ALL the time when this is over and I can't wait for that day to come!!  Her personality is one of a kind, that giggle and smile just melt my heart!! Her cheeks... So soft and kissable and kisses she gets!!  Her head, so soft... Just can't rub it enough!!  I love every little piece of her and most of the time I look at her with joy and thankfulness, thankful that I get to be her Mommy!!  There are times that the fear sneaks in and tries to rob me of those happy moments... Moments where I think what if I don't get to have this little girl in my life forever, what if I don't get to raise her and watch her grow?!  There will always be "what ifs" and fear is something that I will forever combat... I know that with Jesus, the fear will never consume me and I can rest in the fact that He is always with me... He gives me peace and strength!!  It is Him that opens my eyes and heart so I can 100% enjoy and appreciate all of the amazing moments that I experience with my girls!!! It is Him who has blessed me with this amazing life and these three beautiful girls that I get to raise!!  Thank you Jesus for this time at home and for allowing me to enjoy all the little moments in life!!!  I pray that forever my eyes and heart will be open!! 

News is in...

The scans are done and the news is in... There was NO EVIDENCE OF DISEASE on her MIBG scan!! This is the best possible news we could have received!!! The MIBG scan is the scan specific to Neuroblastoma and if there are cancerous cells present they light up on this scan (very dulled down details)!! Addie's scans showed nothing... No cells present!! God is so GOOD and we are singing his praise and rejoicing in His promises!!! He is with her/us and we are so thankful!!! 

Is this the end of Addie's struggle with Neuroblastoma, is she cured, is treatment done?! No, no and far from it!! But we are rejoicing in the victory today!! We are taking this fight one day at a time and today Addie is victorious!!! 

I have heard parents of children with Neuroblastoma say, "we are as cancer free as it gets with Neuroblastoma!"  And what that means is that with this particular cancer you never really know with 100% certainty that this cancer is gone... It can hide and lie dormant and the recurrence rate is large.  The scans we have to detect disease are not full proof and that is where FAITH and HOPE in Our Heavenly Father comes in!!! We can worry, worry and worry each day away; it is our choice to LIVE each day to its fullest and be happy in the gifts He has bestowed upon us!! I am overwhelmed at the blessings we have and continue to receive through this!! I am going to enjoy my gifts (my family, my babies) everyday and never forget how precious our lives are!!! 

I can't believe we are here and Addie has reached a point where her scans are clear... I pray from this day forward they will never be anything but clear!!! I pray that we can find comfort and peace in this and not anxiety in the fear of its possible return!!  Please Lord let your healing continue and protect my baby girl from this awful cancer and the treatment we have to kill it!!!   

If every Neuroblastoma cell is killed, it can NEVER come back!!!  We got this... Naughty Randall doesn't stand a chance against TEAM ADDIE!! 

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!!