Last Day/Dose of Avastin Ever

Today Emily had clinic, day 15, Avastin. This was her last day/dose of Avastin that she will ever have.  It seemed kind of weird that it was her last ever and that we had 12 total rounds of it. Honestly it was almost a bittersweet moment knowing that we have depending on this the last year and it has kept her stable. I even took a picture of it, I know weird but I did. 

Emilys platelets were at 27 today, so she required another transfusion, hemoglobin had dropped again to 9.9, but hopefully that will pop back up. We did notice that she had some bruising going on so we figured she would need platelets. They did take blood today to check for HAMA positive. We should have the results of that in 7-10 days, so that can be reported back to Texas. Dr Gowda also let them know she didn't have any allergic reactions, so now we just wait for this. Once it comes back we can sign the consent form and send the blood so they can start working on the T cells for Emily. 

We did let Dr Gowda know that we have chosen not to go the ICE/high dose chemo route right now (unless scans show us progression) and that we would like to have Emily on the metronomics. So, there are 2 lose dose chemos involved with that as well as some other medicines, so as long as they hold her stable we will keep her on that until the Texas trial is available. This regimen should also allow her platelets to start coming back up, and that is what we want, give her bone marrow a break, but continue on something. Dr Gowda is going to start working on insurance approvals, and we know one of them normally takes a while from insurance. 

We still have not gotten a confirmation yet on scans, which has been frustrated. So hopefully we will know soon.

On the way home Emily had a really bad nose bleed. It was literally 10 minutes after getting into the car to head home, I had to pull over twice to take care of her and was thankful when we arrive to Brianna's daycare that they helped me with baby wipes and napkins, because Emily has blood everywhere, Emily ended up throwing up blood because it was in her throat. When we got home it started again while she was taking a tub. She looked very pale, and the nose bleed was concerning, daddy finally got it to slow down by using a nose spray and she only had a little bit after that. Thank goodness.

So she will head back to clinic next week to check counts and see how she is doing with platelets. Hopefully she will be on the up and up, but if today's nose bleeds are any sign, we may need them next week too.

Please continue to keep Emily in your thoughts and love and that her platelets go up and this disease is leaving her body. This disease is horrible and continues to show its ugliness with is many children. Remember to hug and kiss your children and tell them how much you love them.

                                                     

Day 15 Avastin of Round 11

In the clinic today, and Emily isn't quite herself today. Her temp was 99.9 (ack) and she just seems exhausted!  She was sent home from school yesterday morning after only being there for about 20 minutes because she said her eye hurt and the clinic was worried she had pink eye.  Thankfully her eye didn't bother her all day, so she must have gotten something inher eye but she has picked up something along the way Her WBC is pretty high too which suggests she is trying to fight something. Still waiting for the doctor to see if she may possibly need an antibiotic after her IV avastin finishes. Today is day 15, so her avastin just started about 10 minutes ago. Thankfully her platelets at at 35, so while they are still low, she doesn't require a transfusion. She is sleeping now from the Benadryl. 

Did hear from Dr Sholler about the trial in Texas, so next week we will provide a tube of blood to send to Texas, but we have to go over the consent with Dr Crystal Louis over the phone first.  We just want to have this ready in case we decide on that being the next move. Dr Sholler said Emilys ANC has to be Over 1000 if possible ands that it will take a few months for Chrystals tam to grow and bind to antibody. QWe are also thinking about NYC possibly 3F8, but we are still trying to make the best sound decision. The other thought would be a higher dose of chemo where she would lose her hair, but we just haven't made the best sound decision yet.

At this point we just want to make it through the holidays so she can at least hope to feel her best and then decide what is the absolutely best. This round 11 has been hard on her with eating, she hasn't been eating as much and she is still very picky about what to eat and the foods she likes changes often, but hopefully that will pick back up.

Thank you to everyone on the Text to Donate day, hopefully it was very successful. Also the gofundme is still open for anyone that wants to help and I promise it means very much to us, www.gofundme.com/emilysjourney... You can also still make a donation on Emilys webpage or send gas/grocery gift cards to help. We continue to think everyone as we continue on with this journey.

I found a picture of our family dated 12/5/2010 this was just 18 days before she was diagnosed and 13 days before she went into the hospital because we didn't know what was going on, 

What's Happening?

Today we are in the clinic waiting for Emily to get her treatment. Right now she is starting round 11 of the Avastin/temodar/irenotecan trial. We know that it is holding her stable, but we also know that we have run her course with this because her spots are no longer changing and two of them are brighter. At this time, it does give us time to review and reach out to other doctors on what is the next best course.  We have a few options that we are looking into.  Our goal as it has always been, is NED,with that goal in mind it's trying to make the next best path.  If we decide on the route of chemo and she has to lose her hair again, we are continuing to talk to her and tell her this can happen. But we have also told her that if it has to happen, Mom and Dad both will shave our heads to support her in having to lose her hair.  Thank you for many of you asking about hats, please know we may still be in touch with you on the hats, and we are very thankful.  With that goal in mind too, we are still looking for data to back what she maybe going into, but because she is no longer in the frontline therapy, all of her options are phase 1 and phase 2 trials, so numbers and facts are harder at this point. We are still looking into the vaccine trials which is the one in Texas, so there is a lot more traveling involved it's that, but we know we have to get her immune system up again, her platelets.  Today they are at 33, so still very low, so with the start of avastin and the chemo starting Saturday they are going to drop again, so she will need to be back Monday or Tuesday to check counts.  We continue to be very thankful for those who make donations, they are very helpful with Emilys travels, medicine and expenses. So thank you. The gofundme is also still available, http://www.gofundme.com/emilysjourney ...

So right now, our plan is round 11, this gives us 28 days to hopefully find the best direction. We will be back in Michigan for scans in January.  Just know It's hard to make the best decisions,  but today we are thankful that Emily is here with us for another Thanksgiving and thankful for everyday she is here and can continue the fight with her beautiful smile. 

#neuroblastoma

#neuroblastomasucks

#emilysjourney

Thank you Binkeez for Comfort for sending this wonderful blanket to Emily, she loves it, it is so soft.

EMILYS 2ND ANNUAL BANDAID DRIVE

November 30 is the last day to use the "Emily10" code on smilemakers.com to get 10%off bandaids and free shipping.  We are able to continue to receive bandaids up through December 5th, because our plan is to present them to VCU about the 2nd or 3rd week in December. As of last night, we are almost at 2000! Our goal is over 3000, so keep ordering and sending them in. You guys are doing amazing. Address is PO Box 5383, Midlothian, VA 23112! 

Shout out: 

OB Gates Elementary for collecting over 350 bandaids

Crenshaw Elementary for collecting over 400

Manchester High School for collecting over 1000

Smilemakers for not only making a donation of bandaids at the beginning but for the coworkers for doing a drive

Coworkers at Dominion in Cleveland, OH and the 8th and Main Building in Richmond, VA for helping

Churches and Apartment complexes and all the many others 

The list could go on and on and we don't want to forget anyone, because even one box brings a smile to the kids here in the clinic!!!!!! THANK YOU!!!!!

Happy Thanksgiving. Remember to hug and kiss your kids and tell them how much you love them!

#emilysbandaiddrive 

#emilyhubbeldotcom

Round 4 of Avastin Trial

Tomorrow Emily is scheduled to start Round 4 of the Avastin Trial that she has been on.  She has clinic to check counts to make sure she is good to start, and if she is good to start, she will get pre-meds and then the Avastin that runs over hour and half. She continues to mostly eat pretty well, play and run around and just have a good time. 

We really have been enjoying home together as a family and enjoying one another.  Dad and I even have date night Saturday evening and enjoyed having time with one another while my mom stayed with the girls.

Last weekend, we had a weird day where Emily was throwing up, but there was no explanation as to what was causing it or why it was happening.  This past weekend, Emily wasn't eating much Saturday and Saturday night she was running low grade fevers and then over night she had some pretty high fevers.  Sunday low grade fevers and if she had any more high fevers, we were going to take her to the ER.  Thankfully she didn't, but again all of this happening with no explanation as to why. She also complained of her toes hurting, knees hurting and her head. All of which throws her dad and I to worry.  Its just a reality for us...to worry, to think and then worry some more, we worry about the little things. Even when things are good and she is happy and running around, we still worry.  We can't help it. Its the reality we live in... Why is she getting sick?  Why is she having fevers?  Is something happening in her body that we can't see?  However we take the days when she is feeling up and enjoy and play and have fun, we will never allow the worry to take us down.

I don't update often, because we often have these thoughts in our minds and they are hard to just not think about.  I try to update when big milestones are coming up or are happening so people who don't follow facebook, know what is going on.

Today we emailed the doctors and nurses in Michigan to let them know Emily is starting Round 4 tomorrow and to go ahead and schedule scans after day 15, which will be April 30th. We also explained about what had been happening and that while we hope it is all just normal things, we still worry.  The nurse replied and said Emily was slated to come for scans May 20th, which will delay Round 5 starting should everything be ok to move forward.  I explained that and she emailed back that Dr. Sholler moved some things around so that we could come for scans during the week of May 6th.  So now we just wait for emails with the times and actual dates during that week.  We are thankful that Dr Sholler understands that us families worry when unexplained things happen as they have and that we worry it could mean the worse.

Emily overall besides the unexplained things happening, has been doing great.  Honestly she has been doing awesome, always has the great smile. She is enjoying camping with Dad and I and family, has been doing really well with the Homebound teacher and just enjoying time with family and close friends.  Dad and I have noticed Emily has gotten very clingy to us, but it really is just Emily's nature! She is gaining weight and doing awesome.  We are proud of the fight that she continues to fight on a daily basis and the smile that she always carries and the love that she has for her family.  

We do ask that you think about the families who lost loved ones or were hurt in Boston.  Its a shame that we live in a world that we have to worry about these things happening, but something I have learned when bad things happen like this, there are some people in this world that you are so happy to have met and have such great people in your life.

Hug your little ones and tell them how much you love them

Round 3 Started

Updating...copying from Facebook to update those who don't have facebook....

March 18th...Emily's platelets needed to be at least 30 to start. Got a bit nervous because she had a little nosebleed. They were 29, Dr Gowda approved her to start, but that Emily will have to start coming twice a week to check counts. Premeds are done and Avastin just started about 10 minutes ago and this takes hour and half then fluids behind, so almost 2 hours...another long day!

March 21st...Emily had clinic today and today started Day 1 of chemo of irenotecan and temodar. 

March 22nd...Clinic went well yesterday! Daddy and Emily were not there that long since she didn't need a platelet transfusion. However her platelets are still low, so we are constantly telling her to be careful bc of her platelets! Yesterday started the 1st day of chemo on day 4 for this round. Emily is a just a bit more clingy and emotional we noticed quite a bit last night! Chemo will go through Monday! Just a quick update!

March 24th...Today was day 4 of chemo and it started off pretty rough... Emily just wasn't feeling herself and not feeling well. She said her tummy was upset. After she laid down mid day for a little while she felt better. Tomorrow is last day of chemo and she will go back Wednesday to check her counts!

TEAM EMILY gear on sale!! Tees and hoodies. Adult and kid sizes.
Tees 15$ + 6 if you need it shipped
Hoodies 22$ + 6 if you need it shipped
(Xxl +2$)
PayPal fulltothetop4@verizon.net
Put order info in memo box- include address!
Local orders will be delivered to Wholesale Guitars aka Steve Bryant as well as delivered by Amy Gordy
ALL proceeds go to help Emily with medical needs and travel needs!!!!
Order window closes 3/30

Chemo Delayed Again

Emily was so thankful to have her BFF, Lilly, camping with her this past weekend. The two together are so good together and they had a lot of fun. However, Emily had nose bleeds (that we were able to control) all weekend, and bruising on her legs, so we knew come Monday that she wouldn't make counts.

Come Monday, took Emily to the clinic and she started to get petechia on her chest, so I knew her platelets were low...after waiting a while counts came back and her platelets were 14... 14 meaning can't start round 3 with Day 1 of Avastin and on day 4 chemo. 14 meaning she needed a transfusion. After a long day in the clinic, Emily received platelets after the premeds and we headed home. We were scheduled to come Thursday for counts and to meet with Dr Gowda for plans.

Clinic was quick today, which was great... Emily had her counts checked and while we waited, we met with Dr Gowda. Platelets are becoming an issue because it will become linger and longer between each round that we may wait longer to have her platelets recover on their own. We knew that the Avastin could do this, however with the last round, we are finally seeing some improvement and with that we want to move forward. But platelets may not allow us to move forward, because they need to be at least 35 to start. Dr Gowda went over a trial for resistant neuroblastoma for patients whose platelets aren't recovering and are needing their stem cells. We are not sure that we are interested in this at this time just to receive her stem cells, but we will look it over and also send it to Dr Sholler and get her take on it. This trial consists of 5 different Chemos and "It was designed to maximize cytoreduction via high dosing of synergistically interacting agents, while minimizing morbidity in patients with resistant neuroblastoma (NB) and ineligible for clinical trials due to myelosuppression from previous therapy." While at this point we don't want to give Emily 5 different Chemos, but we also at weighing options to make sure that Emily can continue with this trial.

Today's platelets were 42, which we know most of those platelets are from the transfusion, so we don't know how much they are recovering on their own. Dr Gowda gave us the opportunity to start the next round if we wanted too, but that he recommended we waited until Monday. As long as Monday they are 30 and above, he will allow her to start the next round, knowing that this next round is going to drop them even more. So, Monday I will take Emily back into clinic and hope that her platelets have maintained to recovery on their own. If they are 30 and above, she will get day 1 of Avastin running over the hour and half along with premeds before hand, and the. Day 4 starting the two oral Chemos at home. We did make the decision today that after the chemo that we would not like Emily to get the GCSF (Neupagen shot) that she received the last two rounds because there has been a study down that the growth hormones in the shot may cause progression.

The fear is allowing to much time in between each round and allowing neuroblastoma to take over. Neuroblastoma is once again making dad and I make decisions that are hard to make, and we know that we need to figure out something to help her platelets. We are still figuring out when we will be back in Michigan for scans to see how things are looking, but at this point we still need to get this next round started.

Please send your love and thoughts that the 3rd round will start Monday. Make sure you hug and kiss your kids and tell them how much you love them.

Didn't make Counts, Chemo on Hold...

Snowy drive in (yes I was stopped)

Wednesday Emily had clinic to check her counts and the expectation was to start Round 3 of the IV Avastin and home oral chemo of irenotecan and temador.

630AM, my phone rang to the County Schools saying school was closed because the snowy weather was moving in faster than what expected (when the night before we were not supposed to get anything). I looked outside and it was pouring down raining. Left around 9 once Daddy got home from work and it looked like it had been snowing for a while. It was a long trek into the clinic, but we made it safely.

It was busy in the clinic, so Emily was accessed and we waited back in the waiting room until a room became available. Emily's nurse came out after a while and said Emily doesn't make countys, her platelets are 21 and need to be 35 to start the next round. I certainly wasn't expecting to hear that.

The waiting game, for platelets to recover, makes me nervous. Nervous to wait, nervous that we are letting NB come back in, when this seems to be working.

After talking with the nurse practioner, Dr. Gowda feels confident with this regimen that Emily is on, and that he doesn't want her to move forward without the Avastin. That is great to hear from him... The avastin goes in and attacks the tumor cells that are in Emily's body and then the chemo that comes after attacks the remaining ones. Emily still has such a long way to go, and many tumors in her bones that we want the Avastin and chemo to take care of.

Plan is to wait until Monday, and bring Emily back in and have her counts checked. We are having her eat plenty of greens, and trying anything we can to get her counts back up to where they are supposed to be so that we can start the next round.

While we are nervous about the wait, at the same token it is nice that Emily has a little bit of a break and this weekend we are taking the girls camping and going to meet with Navid who started Projekt 3000. We look forward to meeting with him. Emily is even more excited because her best friend, Lilly from school is coming with her sister who is also friends with Jessie. So, they are all excited and we are excited about seeing them happy. Emily really deserves this and we are thankful to their parents, good friends, who are letting them come along with us.

Please send your love, hugs and thoughts to Danny Nardi's family whom Danny lost his fight to neuroblastoma and AML. Danny and family, we are thinking of your during this unimaginable time. While we never met, I know we have seen Danny's name on the door in Michigan while we have been there! Thinking of you! http://www.caringbridge.org/visit/dannynardi

Please make sure you hug and kiss your kids and tell them how much you love them. The most wonderful thing is hearing your kids telling you that they love you out of no where. Have a good weekend!

Scans Complete with Update

Emily waiting in the clinic today

We have had a busy two weeks, so sorry for the lack of updates.  I try to keep facebook updated as much as possible.  Last weekend, a fundraiser was put on for our family for travel, medical expenses and Emily's chemo by Steve from Wholesale Guitars and it was an amazing night. Emily originally didn't want to go and the only way we could get her out the door is to let her wear her night clothes. (she lives in them).  Once we got there, she didn't want to leave, her best friend, Lilly, from school was there and they have such a bond and a true friendship that is so great to see at such a young age.  Everyone had so much fun, Jessie and Brianna did and it was such a great night. Steve thank you for all of your hard work for the fundraiser, it was an amazing night.  Thank you to Amy for getting the shirts made and tank you to all of the bands and especially to Hali Hicks and her husband Trey Cordle.  Emily didn't want to leave until she saw them play! Thank you for everyone's hard work and a wonderful night and thank you to the friends and family and people that we didn't know who come to support Emily and our family!  THANK YOU!!!!

We are on the road traveling en route back to Virginia, so if I have spelling anything incorrectly, I apologize in advance.  Probably won't be home until tomorrow sometime, but we are en route.  Its a long drive, but even longer for the kids with long periods in the van.

We left Sunday afternoon heading toward Michigan and arrived late Monday night. Emily had clinic Tuesday morning with counts and injection.  All of her counts remain ok, with platelets at 29.  They wanted her to have her counts checked again on Wednesday before scans just to see if she was maintaining her own platelets.  Anxiety for this scan has been pretty intense, mainly just because we changed up the treatment from the DFMO to the chemo on our own from research. Emily's counts still remained ok, but her platelets dropped to 19, so she needed platelets.  She ended up having a weird reaction to the platelets of coughing like crazy, but once they stopped them and the coughing subsided, they started them back up again, just slower. This definitely helped just took so much longer, so we had a long day in the clinic. Long days have been a normally lately, but the positive from that is that we aren't spending as much time in the hospital.and mainly only one day a week.

Today we met with Dr. Sholler about the results.  We waited and watched many nurses and doctors walk by our room, and each time we heard footsteps, anxiety was building. We feared the wait meant the worse, we feared the room we were in, meant the worse, we feared it all. Finally after waiting about an hour, Dr. Sholler came in and said "Things look better!" Sign of relief and thankfully she didn't make us wait to go over things..  She showed us the scans and things definitely look better. She has two spots that have mild uptake, we originally thought it was one, but after review, it was two, and two spots on her spine are resolved and all of her other spots are mildly decreasing. This is great news, 

Thank you to everyone who for the past two days and days before have shown their support by sporting the Emily gear and leaving their love and support on Emily's page.  It means so much, and it helped. The last two rounds of chemo and Avastin have helped along with the homeopathic things that we are doing at home and only organic. 

Dr Sholler recommended with the positive results of the scans, to do two more rounds of the same chemo and Avastin, except that instead of doing 21 day cycle for the round, make it 28 days.  Both Dr. Gowda and Dr. Sholler are both agreeing with this because of her platelets and hopefully this will give them more time to recover. We too are ok with this and will start looking into some other homeopathic stuff to add into the mix here. After the 2 rounds we will go back for scans and see how things look.  The 28 day cycle should also give some more free time in the mix as well, so we are definitely ok with proceeding.  The hope is still for CR (Complete Remission) and putting her back on the DFMO to either keep her in Complete Remission or at least stable (partial remission).  

Thank you for continued love and support and sending all of your thoughts, because they means so much and we are so hopeful to still get Emily into remission and this nasty disease gone and out of her. She is ready for treatment to be done, but she is handling this so well and we are so proud of her.

Alright the kids are calling in the backseat, so that is my que. Remember to hug and kiss your kids and tell them you love them everyday!  

Emily Update

Tomorrow marks Day 15 of round 2 of this trial. Emily finished the 5 days of chemo last Wednesday and then she had clinic on Thursday. We had thought it was going to be another quick visit, but Emily ended up needed platelets since they had dropped to 24 and was having a nosebleed. She hasn't had to get any transfusions for a while, so that was her first in a bit and she did well with it. Her weight also showed that she had dropped two pounds.

Emily was doing amazing...the girls had a blast at the Yo Gabba Gabba show on Wednesday evening. This was their first time ever doing something like this, so it was really great that they got to enjoy a night out. Thank you Laura for the tickets. Valentines Day was really sweet, and Emily was so excited to go out with daddy to get mommy a gift. she picked it out by herself from all the girls and she was so proud. It was really sweet, but mommy felt bad for not doing anything for daddy. I love you babe. By time weekend hit, Emily's energy levels completely dropped and she wasn't eating. Emily is back to the couch again and sleeping a lot. Enough to where the teacher has not been here Monday and Tuesday because Emily has been sleeping. She has daddy and I really concerned and worried....it's hard not to worry, but we are. She has complained of pains here and there, where we have given her Tylenol and it has helped. She has also complained of ear pain first in left ear and next night right ear and has continued to be right ear for a the past couple of days. We are hoping that the ear pain is just an ear infection. But we are also hoping that the sleeping a lot, low energy and not eating is from the chemo (even tho it is low dose and shouldn't affect her "quality of life" in this way) or a virus/cold.

Anxiety is definitely building with traveling to Michigan on Monday coming up. It's hard not to think about it and not worry about it. Wings of Mercy will be taking us Monday to Michigan and we will be home Thursday evening. The anxiety is extremely high with so many children who have passed in the last couple of weeks from neuroblastoma.

Like I said tomorrow (Wednesday) marks day 15. Emily will have clinic to check her counts and see how things look there and also receive the IV Avastin. These days tend to last all day in the clinic, so I'm hoping that today will be different. Also hoping that her platelets have come up.

So, in not thinking about the fears, the worries, and the traveling coming up, it's been a busy week and a very busy weekend coming up. We have been working really hard in organizing the house, cleaning and just getting it together...this weekend will be a busy weekend, we have Sue and Jojo coming into town, date night for daddy and Emily (In hopes she feels well enough to do so), making "Team Emily" bags for VCU newly diagnosed families, Saturday night the fundraiser for our family, and then Sunday Doug and I will be married for 6 years.

Sorry for not updating regularly but life has been busy. I really just wanted to give a quick update of how things are and where we are. Make sure you tell your kids you love them and hug them. Good night!

New Plan

Emily wearing her wig that she put n the other night.

It's been awhile since I have updated but really more because we have been trying to wrap our head around everything that is happening and information we have been told. We still haven't wrapped our heads around anything.

We met with Dr Gowda on Friday afternoon of last week and talked over a trial that he thought may benefit Emily! It's a trial that is done at Sloan Ketterling however we are going to do the trial here at the home hospital, and do scans in Michigan. The trial consists of 3 different drugs with Day 1 and Day 15 of Avastin. Day 4-9 will include irinotecan and temolazide Avastin is done at the clinic and the other two are done at home! Emily will have 2 rounds of this regimen and then head back to Michigan for scans. If the scans show improvement, then Emily will move into 4 more rounds of just the irinotecan and temolazide.

When talking with Dr Gowda he really put some harsh reality into play for us. The harsh reality is when Dr Gowda said, "something you all really to need think about is that if the scans show no change, to think about giving Emily a good quality of life and stop treatment!" It's not what we expected to hear, but after 2 years of trying many different Chemos, antibodies, radiation, MIBG therapy and nothing is working. So after two rounds of chemo regimen have scans, and no change we really need to think about things!

Fuck we hate cancer, but we hate neuroblastoma even more. This put a hole in our heart and has really been pretty devastating. We want Emily here longer than we are and see her doing all those things that she should be doing!! we want her to celebrate her 6th, 7th, 8th and so on birthdays and be here for Christmas for years to come. For someone to make it real and smack you in the face that you need to give this up, really breaks you apart. When Dr Gowda said this I felt my heart drop to the floor and Doug just look at me and look at him. Ok pick your heart back up, baby girl can fight this. She has always been a fighter, and always does it with her amazing smiles and dimples that you just want to pinch her face and love her like there is no tomorrow! I've become pretty quiet as I call it in my own world and been in a hole trying to wrap my head around what is really happening here while at the same time trying to move forward with life and everything going on around it... Doug is really messed up about all of this too, trying to recover and find hisself again. But Its scary and It's a harsh reality, harsh reality that breaks a parent into pieces and brings you to the floor hurting and crying. Wheres the rock you want go throw and break something! I honestly never knew what my heart hurts meant until this. My heart hurts and I know that Doug's is hurting too. There was something that I recalled today in my thinking ( we do this a lot lately) but at the beginning someone told us "this gets easier with time," I wish I remember who told us that because I would really go back and tell them they have no idea, because this has not gotten easier , actually it's gotten worse and harder. The decisions are beyond painful and hard to make. I can still recall when the first chemo was being hung, I couldn't stop the tears...the tears today are much deeper and more painful. I remember the first day of radiation and having to walk out of that after laying her on the hard table and seeing the laser beams on my daughters body, and crying. The tears today are still much more painful. I recall MIBG therapy and crying because she was crying because all she wanted was her mom or her dad and couldn't because of the radiation in her body. The tears today are much more painful. Starting nifurtimox with chemo and hoping with all my heart that the treatment would work and the highs and lows of it. Again much more painful knowing today we are not looking for a cure and it could become a possibility that we are not even looking to keep is stable, but to allow her to have a good quality of life.

Anyway, Tomorrow will be day 1, however a CBC has to be done first and if her platelets aren't at a level he is comfortable with he may ask that Emily not use the Avastin at this time, because it could be hard on her platelets to recover. Last Wednesday Emily's platelets were 47 and for this trial you need to have 35. Dr Gowda feels her platelets need to be at a comfortable amount. If CBC shows platelets are still recovering Emily will start Avastin tomorrow marking day 1. Monday will be day 4 and at home Emily will start the two Chemos again i said at home. They will go over how these need to be taken and timing and all. We've had to make calls to get these drugs at home and not many places cover them, and when I finally found one, he came back with a crazy high price, however it was the price. Our awesome nurse was able to get one of them through the oncology clinic for almost 70% price cheaper, but not the other one, so we are really thankful for at least one of them being cheaper and paying a huge out of pocket expense is not as much, but still expensive. Thank you Elaine (Emily's nurse since she was diagnosed) for all the hard work you do. She will go back for count checks probably once a week for this 21 day course regimen and day 15 go back to clinic to get the second Avastin.

I need to end this because it's bringing me to tears which have been a many lately just thinking about everything. But on a happy note, Emily is still doing amazing. She is so full of life and even went to school today, although we fear the flu outbreak right now and all the germs. (Never thought I would be a germophobe, but the germs right now are horrible.) The picture attached is of Emily putting her wig on the other night.

I ask that you all make sure you hug and kiss your kids every night and tell them how much you love them. Please always tell them how much you love them.