As Parents...

This is a bit raw tonight, because our hearts are hurting badly!

We all have to make a lot of decisions as parents, a lot! When you get pregnant there isn't a guideline on what to do and there isn't a handbook that tells you decisions you may or may not have to make! Prior to coming a parent, no one tells you just how many decisions come into having to be made? From small decisions to big decisions... Decisions that are easy to make and some that are hard to make! Some that could change ones life and some that could change the family's life!

But as parents with a child with cancer or other illnesses parents have to make decisions that no parent ever wants to make and no parent even wants to sit through and listen to have to make them later! When your child is diagnosed your life changes forever and you realize that you are now signing papers allowing the hospitals to give fucking toxic medicines in your child's veins! You are watching these toxics drip by drip going into your child's body and now making sure the hospital is doing everything right because you are in a fight mode! Fight this damn disease that is invading your child! Your signing papers to do surgeries knowing side effects could be life altering to your child or even worse death! Yes you have to sign these papers and each time yo sign these papers your heart breaks because it just reminds you that your child has a disease that you are trying to rid of their body so they have a fighting chance to attend grade school, middle school, have their first dance, high school, homecoming and prom , their first boyfriend and their first breakup and getting married! Fuck it hurts to even fathom the thought they may not get any or all of these firsts and just events! It scares my every being to think that Emily may not be in that rear view mirror and hurts to think that "daddy's girl"...

Today we came to the realization that the fight we once had is not the fight we have now!! The fight is no longer about trying to cure Emily, the fight is about keeping this disease at bay and keeping her comfortable and with a good quality of life! Yes really that was our conversation a conversation that no parent wants to have and to have about their child! Realization that this damn disease has a grip that we have to get our hands on!! Our hearts hurt, it js pounding with fear, sadness and worry and the heartache is painful!! It is getting harder and harder to talk about! People ask about Emily or how things are going and I've come to realize it is harder to talk about anymore to anyone, it's as if we are back at the beginning when it was hard to talk about but now it's different, our hearts hurt, they are bursting at the seams and just want to rip open and scream out!

So as parents Doug and I are forced to figure out what is next for Emily and as parents we have to talk to Emily and tell her what is going on! We have to tell her we are not almost done with treatment, but that now we have to fight harder and hit this freaking disease again! As parents we are still looking at trials and trying to decide what to do !! As parents...

Today was hard, hard to talk about what the doctor here feels that we should do and watch as these doctors and nurses that we have spent the last 2 years with have more emotion about our daughter that we all had tears in our eyes! Emily has started to talk more to Dr Gowda and loves Elaine, something that we all take notice with! Not a dry eye in that room, talking about Emily who is progressing from a damn disease that should never even be in her body! A disease (damn cancer) that should never be in any of our children's body, that we don't even know what is happening! This disease can become so aggressive that we won't even know what hit us!

Just know that we still have our big guns on and we are not ready to give up this fight, but we are bursting at the seams that we are about to blow! I would be lying if I didn't say we are not scared, because we are scared of everything! Scared of EVERYTHING!!

We haven't made any decisions just still talking them through again as parents! Waiting in scans to be scheduled in Michigan or early January!

I Don't Have a Post Title Tonight...

Our Beautiful Christmas Baby Girl

Sorry...

Right before the 3rd round of Antibodies, we learned that Doug's best friend was diagnosed with lung cancer. The day before Emily went inpatient, we made Thanksgiving Dinner and I made an extra meal for Doug's best friend and wife whom had already been in the hospital for a week for Doug to take over. Doug has been visiting with him and checking in on him and helping him with questions.  Tom is an amazing man, a father, an amazing husband and doesn't deserve this, he takes great care of hisself and always works out and eats well, so please send some love for him. We are walking the journey with him and his wife as well. (This was random but I was thinking about him and really wanted to share)

So today...today...today was a long day, longer than what we expected it to be. Counts were checked this morning and Emily's platelets dropped again, this time to 19.  So, they dropped from 29 to 19 in two days. Certainly not what we wanted to hear and we were asking nurse Julie why she thought they were dropping.  We really don't have an answer, but she had to get a transfusion. Once the platelets were just about done Dr Sholler and the Nurse Practioner Shannon came in.

I can't remember what we were saying but I think it had something to do with the platelets and Dr. Sholler was standing there, and said "Well there is progression."  WHAT? WTF you have to be kidding me?  Im sorry you said what?  She indicated she has some more spots in her spine and some on her head.  Im sorry I can't be technical here and tell you were because this honestly wasn't the news we were expecting to hear.  We didn't want to look at the scans, and didn't even look at the report, because once again like 2 years ago everything seemed blurry again.  Tears began to flow and everything around us just seemed to stop.

Emily has true progression these are spots that she has never had before.  I know that Dr. Sholler said they are only in the bone, so no soft tissue just cortical bone. She has been taken off the CH14.18 trial so no more inpatient at this time and all medicines such as GM-CSF and accutane have been stopped. Its not working because the disease is spreading. IT'S NOT WORKING DAMN IT.  We really thought the damn antibodies would clear us, what happened.  How?  Why? 

Because of the concern of the platelets dropping, they are worried about her bone marrow, so tomorrow at 8AM we we will meet with the nurse to have another CBC done and then have a bone marrow biopsy done. The biopsy was not planned, so this had to be placed in last minute. We should have a preliminary by end of the day of the results on her bone marrow.  We will talk with Dr. Sholler about DFMO, she thinks we should put her on this and let Emily's enjoy the holidays and we can discuss from there what our next steps will be. We think this is a good idea, Emily deserves to be home for the holidays with her sisters and have a wonderful day. We do already have Dr. Gowda searching for what other trials may be available to us and Dr. Sholler is looking and we as well will be looking. The Bone Marrow results will give us more of an idea of the way we need to go as well.  If we have bone marrow disease,we are playing with something more messy.. But we are both are even more scared because Emily has not had any bone marrow disease since she was diagnosed 2 years ago.

2 years to the damn day Emily had scans and there is growth.  What the hell? We are both at a lost here, both feeling sort of not together, just not understanding how this happened. Doug and I both went in seriously believing some of the spots had gone away and that we were well on our well of acheiving that clear that we have been wanting. Emily deserves to be clear, she really does.  Emily DESERVES THIS.  Our Christmas wish didn't come true and our hearts are broken and we are both scared. Emily is not in any pain right now, nor has she complained of any at this time and we hope it continues to stay that way and that this disease will go away.

Im sorry I write this, but I am.  Randomly today tears have fallen for both Doug and I. Neither of us can fathom the thoughts that something ever happen to Emily and have our 3 girls, 3 girls together.  We can't fathom the thought of Emily not being here to celebrate her birthdays and Christmas and Holidays. We can't fathom the thought of being in our vehicles and looking in our rear view mirror and she not be there, so we continue to fight.And we honestly don't how we could handle it... Seriously this disease is a monster, a monster that invades our children and there is no understanding it.

We haven't yet explained this to Emily, we really have to find the right way to explain it. Emily is so ready to be done with treatment, so we really need to find the words to talk to her and really have her understand. I know that many of you have been waiting for an update, but we really are still trying to swallow all of this. If we don't respond to text messages, emails or phone calls, please know right now we are still learning to deal with this in our way.  We are still trying to figure out everything and moving forward.

Today we went and picked up purple and yellow chalk for Teddy's mom, for Teddy, for Emily and all the other children fighting neuroblastoma. If the roads are not wet and covered with snow, we will be stopping every so often to write on the road..  We will draw a big yellow ribbon for pediatric cancer and in purple we will write cancer kills children too.

2 beautiful girls fight Neuroblastoma and they are both amazing.

Today we also went to visit Brooke who is inpatient neutrapenic and bring her some Christmas cheer. It was nice. Nice to finally meet Brooke's dad and see Brooke's Mommy. The love that both Brooke's dad has for Brooke and the love that Doug has for Emily can be seen everywhere.  Daddy's girls...



Daddy's girls. 

Please continue to think of Emily and that her bone marrow is clear and that mom and dad conitnue to have the strength to get Emily through this and that we make the decisions that we need to make.

Rollercoaster Ride

Our stomachs are in knots, our hearts are heavy and our fear is high!

It feels like in the past week and a half we have been on a major roller coaster ride one where when it rains it pours! Ups and downs and never knowing when it will just stay level.

Emily had clinic today and the visit didn't go as I thought it would. So much so that after clinic I asked my boss if I could work the rest of the day at home! I was just expecting a normal visit to check counts and then take Emily home and then head to work. The past few days Emily has had some (4 to be exact) red/purple nodules develop on her skin on different parts of her body. I explained them to the nurse and she told Dr. Gowda about them, who came and looked at them Emily says they don't itch, they hurt when you touch them. Some of them since we have been watching them have gotten bigger and some are lookinh darker! Dr. Gowda also looked closely at her leg where it has been hurting to touch. She is still complaining it hurts to touch, but other than that, she is walking ok. He thinks that the leg hurting, the headache and ears could just be from the Zometa, because it does cause bone pain, but it still makes him wonder some. He is showing some concern about the 4 spots that we showed him this morning. As of yesterday she had 3 spots on the skin that are redish purple and a new one showed this morning before we left for clinic.

Dr Gowda said this could be one of 3 things...
1. an infection that is causing the bump and once her counts go up these spots should go away (but he said normally if it was an infection a fever would be accompanied with it)
2. Blood clotting and bc of that it is causing bumps
3. Progression...these spots could be what they call "blueberry muffin" spots!
He said all of these could be painful to touch!

Our minds are all over the place right now! Emily didn't need any blood products today so Dr gowda took us out of the fish bowl and into a room! This really scared me, but he wanted to get a closer look at Emily's spots and also see If there was any others! He also said that he has requested an Mibg scan next week so we can see what is going on and showed me what a "blueberry muffin" spot lioks like! He said if the spots are gone we can cancel the scan but he wanted to have it scheduled! Elaine, our nurse also drew more blood to do a d-dimer test! This is to check for blood clotting and he would be able to see by the number if that is causing the bumps but this was the lowest of concerns on his list but he also couldnt put it aside!

We know that Dr Gowda is concerned because he said before I left if you have any concerns or any other spots show up or problems, please email me directly and I will call you!

Dr Gowda emailed tonight and said the d dimer was negative and that the Mibg had been scheduled for Tuesday and Wednesday! No affirmative time until we hear from radiology! He did email Dr Sholler this morning to advise her of what has transpired at this point and that he had requested for a Mibg here in va unless she wants us to come there! We have not heard a response back from her yet!

So our biggest concern is that these spots are NB! We have taken Emily back off the nifurtimox for now because if she is progressing they will pull her from the trial anyway! We are stopping everything else until we know what is going on!

If there are any NB moms, dads or grandparents that have had any experience with this, please let us know! We are beyond scared and worried and the anxiety is taking the best of us!

This brings our talks of where she would go for treatment if this is our worst nightmare for the 3rd time! Our hope is that these spots go away as her counts go up! Today WBC was only 500 and her ANC is only 200 so we were told Emily is still neutrapenic so to still watch for fevers and because platelets were 20 to watch for any bleeding or bruising!

Please send your love and thoughts that this is just an infection! Remember to hug and kiss your kids every night and tell them how much you love them because you never know when things can change!

We will continue to keep you updated! Im sorry if we don't answer calls or texts but right now we are just taking all this information in and trying to understand! We have no idea where things can be next week!