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!

Praise Him

Praise The Lord... The repair worked :) and I got a, "I love you so much, mom!" They put her on a morphine drip and she is feeling so much better!! She has been awake since we got here, and for the last few hours hasn't complained of her throat or her tongue, thank you Jesus!! She has also been fever free!  She still won't eat or drink, so please continue to pray for that!! 

I ran into our surgeon in the hall who is a Godsend!!  He asked right away how Addie was doing!  I asked him if he had a chance to see her scans after round 2 and he hadn't, he sat down with me in the clinic and reviewed them!  It was the first time I saw them, I have been too scared to see them because I was so overwhelmed by diagnosis week!!  They were incredible, the difference is unbelievable!! So wonderful to see that, especially with the rough few days we have had!  He also spoke with me a bit about N-MYC, I can't say that I felt better about what he said but I definitely felt more informed and it didn't make me more scared!!  I don't think I will ever feel warm and fuzzy about that piece of her diagnosis or any part of her diagnosis for that matter!! But what I do feel good about is her response to treatment!!  I pray that this continues!!  Our surgeon said he saw a girl once go through treatment and her tumor never shrank, it just continued to grow, thank you Jesus for Addie's positive response to treatment and for doctors and researchers who specialize in this!! Just a few years ago there really would have been little hope of Addie surviving!! We still have a long haul but there is definitely more hope for recovery!!!  We all just need to have FAITH, the single most important factor in Addie's healing!!! 

She is currently getting a platelet transfusion.  Thank God for blood donations... Thank you to anyone who has done that!! I have never appreciated or realized how important that was until all of this!! One of the many things I now appreciate so much more!! Donate, Donate, Donate... It really does save lives!! 

Okay counts... Let's rise!!! 

Go Team Addie!!

Ambulance Ride

Crazy Monday morning... Yikes!!  Addie's line broke this morning following labs... I am pretty sure my blood pressure was at least 200/100!! It was scary, fortunately I am a quick responder and we got it clamped and had no issues!! However, we did have to take an ambulance ride to Iowa City to have the line repaired.  Addie did wonderful for the ride, slept most of the way!  Myself on the other hand, not so good... So car sick, thanks for that Mom!!  

They repaired her line, love you Mary, she is so incredible!  She is the central line nurse, specialized in all things central line!! We have to wait four hours to use her line and at the point we will be able to see if the repair worked.  If the repair doesn't work we will have to do surgery and have an entire new catheter placed! We would love to avoid this, please pray that the repair works and Addie will not need surgery!! Also please pray that this is the last repair we will have with her lines... They have been a bit finicky for her!!

Addie is still really sick, her throat continues to bother her and she is still running a low grade fever!  She has not eaten anything or really drank anything since Friday.  She is also a bit swollen around her eyes!! Please pray that the swelling is nothing and has nothing to do with her kidney function!  Also please pray that she begins to feel better and resumes eating and drinking!!

We are here in Iowa City until she perks up!  I am definitely missing my girls and my husband but so thankful to be able to be here with Addie, taking care of her!! I have gotten quite a few dirty looks from her and haven't heard too many "I love you so much" but I know she does, it just hurts too bad to tell me... Poor baby!!! 

This too shall past!! And before too long I won't be able to get her to stop talking or eating :) 

Prayers please!!!

She can't suck on her paci because her mouth is so sore... But there is no chance she is letting it out of her sight!

Hospital

I had a feeling this was coming...
Addie started running a fever around 6 AM and here we are at Covenant.  She is absolutely miserable, her throat is so sore!
Praying for a speedy recovery and that all this pain will soon be gone!  Mucositis can be dangerous and increases your risk for some bad infections, so please pray that The Lord will shield her from these!  Also pray that her counts would rise quickly so her body could begin to repair and heal itself!

I can't be at the benefit today but I am wearing this great shirt!  Love it, thank you!

These are from the last time we were at Covenant... Just came across them while writing this post! Love that smile

Prayers Please

Little Miss has come down with some throat sores... A very common side effect of the chemotherapy that she received!! She started complaining today after nap and it has progressed from there!  It definitely is limiting what she can eat and also what she wants to do!!  When the pain hits, it is substantial and it puts her on the floor in tears!! Luckily, Tylenol helps and she was able to play outside for a bit and eat some very heathy Cheetohs.

It is both a blessing and a curse that she doesn't understand all of this... It is heartbreaking when she is suffering, any degree of pain for Addie makes this all so much more of a reality!!  

I understand that these mouth sores can get really severe and they usually last until her counts rise, which can take awhile!

Please pray that the sores will not worsen nor spread!  Also pray that the medicines would alleviate her pain!  Pray that this is in fact mucositis and nothing more severe!! And lastly, please pray that her counts would rise quickly so she can be free from this!!

I want to apologize in advance for not being able to attend the benefit that Pleasantiville is having!!  I was planning on driving down for a few hours tomorrow but with Addie not feeling good it just isn't in her best interest for Mommy to leave! I can't say how much I appreciate everything and everyone for what they have done for this benefit!! I also can't begin to tell you how much it means to me that everyone has been so supportive of Addie and her fight, and to my family in Pleasantville!  It makes my heart so happy that my hometown, whom I have unfortunately been quite detached from since I graduated, would all come together and do such amazing things for myself and my family!!! Thank you, thank you!!  I wish there was a way I could show you how much I truly appreciate everything you are doing!! I pray someday soon Addie and I can come to Pleasantville, cancer free, and thank all of you personally!!! We are truly blessed to be supported by those like you!!

Go Team Addie!