Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

Emily's Journey's Most Recent Facebook Post

Wednesday, June 29, 2011

Wednesday, June 29, 2011

Life has been busy with working, taking Emily to scans, and just the day to day life.  So, every night I think I will update Caringbridge tonight, and I fall asleep laying the girls down to bed.  I guess that means I am exhausted.

The past 2 weeks have been filled with getting Emily's scan post "induction" period.  Scanxiety has definitly played a role during this time and one where we are just ready to have all the results and move forward. Here is where we currently stand.  The MIBG didn't show anything where Emily's tumor bed was, which is great, however the part that I had a hard time with is learning that the 6 rounds of chemo hasn't touched the 4 sites on her iliac bones and her femur.  For me, I was hoping for NED and just hearing this, put a damper.  I did ask,so can it still spread?  The answer was "Yes!"  again not what I was expecting to hear.  The CT scan showed the the tumor was completed removed and it showed a collection of fluids around the kidney from where the tumor was removed.  The oncologist indicated this was normal and nothing to be concerned about. This week Emily has had her Bone Marrow Biopsy as well as the Bone Scan.  We have not heard anything back on the Bone Marrow which is the other one that concerns me.  I remember Dr. Bagatell from CHOP telling us don't be surprised if one shows Bone Marrow shows you clear  and the next one does not.   The Bone Scan from today from a pre-liminary stand point, looked clear, however we haven't gotten a definite fron the oncologist.  

So at this point, Emily is free from the hospital, clinic, in that vicinity after today for 2 weeks.   She had a clinic visit today as well to check her counts and everything is on the way up up.  So she is safe to head to Disney World. 

Tomorrow we have family coming in from Massachussetts, they come down every July 4th and we spend time with them.  We are looking forward to a calm relaxing weekend and spending some time with the family.  We are in search of a campground for the weekend though, I think we waited to long and now we are having a hard time trying to find a place for the weekend.   Hopefully we will find something to take the girls for the weekend and just enjoy some time away.  Wednesday morning the Love Limo will come to pick us up at home to take us to the airport and then we will head to the airport to be taken to Disney.  The kids are very excited and we are all looking forward to taking time away from "C" and just enjoying time together as a family!

Here are a few people that Doug and I have heavily on our minds and we hope that you will stop by and leave them lots of love and we sent you there! 
Meesha is such a sweet and kind girl, and so is her mom and dad.  We know them because they are local and Meesha also goes to VCU Health Systems where Emily goes. However last week they were away and were called to come back for some extra scans...please leave them some love and peace as they go through this time ... http://www.caringbridge.org/visit/meeshajoshua
Brooke, oh how she reminds me so much of Emily, in just how her mom writes about her and how she is.  Emily would really like to meet Brooke one day and Brooke would also like to meet Emily one day. Hopefully one day something can be worked out so that they girls can meet.  Jessica, her mom, is also a very sweet women, we talk through emails or what have you ... however right now they are going through a hard time ... they are very far from home, from dad while Brooke has to endure extra chemo at Sloan Ketterling in New York.  Please also stop by Brooke's page and leave her some thoughts and love during this time away from home.  http://www.caringbridge.org/visit/brookehester

We think about all the families that are having to endure this nasty mess and wish it could be taken away and never be seen again, but its a reality of one that we all have to face and hope that it will go away and never come back.  Its been a hard reality for us to face.  We sat in the clinic with Emily the other day when she was having to do a bone marrow and all we could think about was "Why are we here?" "is this real?"  At times it feels like this should be a nightmare, because really it should be, but then you wake up or a doctor walks in or reality faces that this is all real.  

Please send lots of thoughts Emily's way that the Bone Marrow is clear and that we will be moving forward to Stem cell Transplant come July 18th now. 

Thank you again for everyones love, prayers, and thoughts, they mean so much.  Our family in Massachussetts held a benefit for Emily on Sunday and it was great success, we were able to watch what was going on at the restaurant and somewhat be with them, although we couldn't actually be there with them (there isn't a hospital real close to them in case we should need one) At the end, they called and we were able to watch them as they said a prayer for Emily and us.  It brought tears to both Doug and my faces.  It was really a very special moment and we can't think you all enough for just thinking of sweet Emily during the time and doing something so amazing for our family.  It means so much!!!

Thank you again to everyone.  Love and kiss your kids and hold them tight!

Also please be sure that you guys are following Emily's Facebook Page, I tend to update tid bits of information there when I can do it quickly to let people know how things are going or whats going on when I can't update caringbridge so quickly!!

Sunday, June 26, 2011

Fundraiser Today

I know I have some blog posting to do to update you all on things, but life has been busy, but I did want to let you know about an amazing fundraiser that Doug and mine's family is putting on today in the Berkshires.  So, if you have family in Massachussetts, let them know, and have them head on over there!  

Click here to find out more about the event, but here are the details:

Sunday, June 26 @ Chameleon's 12 - 4 pm, Please join us to raise money for Emily’s medical expenses. DJ Teti & DJ Fritz, Food, Raffles, Silent Auctions, Face Painting & Bowey the Clown $20 a ticket includes pasta dinner.

DJ ...Food, Raffles, Silent Auctions, Face Painting & Bowey the Clown FUN FOR ALL

Pulsar Watch doanted from Charland Jewlers
Authentic NFL football signed by Joe Montana
Voucher for 2 to any show at Colonial Theater
2 Six Flags day passes,
Golf for 4 18 holes with cart GEAA
Red Sox/ Rangers Tickets at Fenway in August
Cranwell 1/2 hour golf lesson with director
$100.00 Gift Certificate to Zabians Jewlers
Twlight New moon Saga Movie with autographed pictures from Taylor Lautner and Robert Pattison
2 movie reel canisters from Desperate Housewives and Castle
Framed and matted picture of Stockbridge
Many more items for raffle Gift Certificates to local restaurants and other businesses.

$20.00 donation which includes a pasta dinner.

You may follow her journey or send wishes at:

Here is the address to Chamelons:
1350 east St
Pittsfield, MA

Saturday, June 25, 2011

Emily Singing Justin Bieber

Just wanted to share a sweet video Emily singing Justin Bieber, she is so passionate.

Tuesday, June 21, 2011

Emily is Home

Just a quick update to let you all know that Emily got home yesterday! She is happy to be home after having to get platelets and a blood transfusion bc her hemoglobin was 5.4! The lowest I had ever seen it and platelets 5! 

I wanted to update last night but sheer exhaustion set in from stress, anxiety, scanxiety and just overall things that bother you, we all fell asleep! 

We are happy to have Emily home!

Monday, June 20, 2011

In the Hospital Again

Well I guess the fever didn't want to stay away for Emily.  Friday evening, her temperature was 101.7 under the arm and just before we left to head to the hospital, it was 102.2.  So we woke up Jessie and Brianna who was fighting sleep, so she hadn't gone to sleep yet and we headed on about 1130PM.  Doug and I thought we had this one and we were in the clear of the fever.  We really did.  We knew this time, it was going to land her a visit for the weekend of admission. Emily hates the hospital, and so do we.  We were trying everything in our power to keep her out of the hospital, but to no avail.   It was bound to happen and we knew it would when we left finishing up Round 6 just last week telling everyone we would see them in a few days.  I have to be honest though, I took this admission rather emotionally.  Emily didn't have a temperature when we got here, but because she had a temperature before we left, they had to admit her.  Emily had fallen asleep while we waited for her counts to come back.  When they came back, her WBC was less than .1 like it was in Round 4 and everything else was decreasing also.  Of course this is expected during chemo treatment, but the reality of it just sucks. Emily was admitted and honestly I feared her waking up, because I knew when she did she would be so upset about the stay here.  Well she woke up when we got to the room and she flipped out. Finally I get her calmed down and then the room we were put in wasn't the right one because something was wrong with the bathroom, so she got moved again.  Which meant she got upset again.   Finally got her calmed down and we were off to sleep.

I really hate that she has to deal with this. She has done everything that we have asked her too, taking tubby's every night, being very careful about everything, taking her vitamins every day and the fever still came on.  Something else that Emily has been doing really well at doing, is swishing and taking her glutamin during Roung 6, and awesome news, Emily still doesn't have mouthsores and if she was going to have them, she would have had them by now,  So come transplant, she will be using both Traumeel and Glutamin.  We are so happy to hear about this and not having to worry about that part of it, so this stay here she is eating.

The reality of cancer sucks, we stay pretty positive most of the time and really try to look at all the good things most of the time.  But, we are not always positive.  Its hard to be that way all the time, especially when you are in the hospital and you are sick.   And when you have to be away from home in a hospital, this place where has become our second home, really sucks.  This hospital is just not a hospital where a child would want to come and stay.  Children's Hospital of Richmond, is really not like a Childnen's Hospital and this place has a lot of work.  Ran into a mom today that we see here quite often and she said, "There isn't much to do here huh, besides walk around?"  I said, "No, and it is actually quite boring here. The rooms are small, they are not decorated to appease a child and they are just not Children's Hospital Oriented.

Like I said earlier, this admission was not only hard on Emily emotionally, but also on myself.  Sunday (today) was Fathers Day and I was looking forward to doing somethings for Dougie with the girls.  Father's day was coming and like on Mother's Day Emily was home, and I so wanted that to be the case that Emily be home for her dad and help me make a nice dinner for her dad and do some pretty poses with Emily that we could do a card. It just didn't turn out that way.  I know we can celebrate it next weekend and Dad is fine with that, however it was just another one of those things...Life isn't normal for us..  It possibly could have been the reality of things, however last night at midnight she had a fever of 100.7.  So, blood cultures were drawn again, CBC done and that meant another 24 hours of no fever.  During the day we do well with no fevers, it when nights nears and/or over night. CBC last night still showed less that .1 and everything was still dropping.

These stays get harder and harder, Daddy comes to visit with the girls and goes home at night, no one else visits, and mostly we get texts of "Hows Emily doing?"  These stays are hard on Emily, because she just wants a normal life (whats normal anymore??) but that of staying at home and going to school, but they are also hard on Doug and I. Daddy does a lot of running, since we eat organic of going home and making meals and coming back with meals, keeping the girls at home, keeping up with the house while we are here and just trying to maintain home and all that needs to be done, while I am here with Emily.  Watching Emily fight, we fight with her! She amazes us in how strong she is, and all that she does.   I've found myself to not be much of a phone talker these days (probably months) and a lot of what I feel and think are pushed out on Doug and/or through the blog.  I've come to the realization that my kettle pot is full and it is going to boil over sooner or later, because my fuses are short, I can only handle but so much and my emotions are even more now than they have been in a long time.  I cry so much easier these days.  I try to be strong, I don't like to get upset, because it makes it hard on Doug, and I want to be strong for him to.  Doug thank you for being a rock and for being the person that you are.  Doug and I have been there a lot for each other. We have had the \wooden swingset for a bit now, but there hasn't been time to put it up. Doug really wants to get it up for Emily and the girls, but we aren't home.  Prior to admission he had planned to work on it Saturday, unfortunately that didn't happen and we were here. So, for now it sits..

Emily has had a good day today, no fevers, we have played cards, played with Brianna and Jessie, walked the halls, painted her nails and toenails, played games and eat.   As the night has come, temperatures are starting to go up.  Last was 100.2 and 100.4 is a temperature.  She is supposed to go home tomorrow in the morning if she remains fever free, so please hope that the temp goes back down and WBC and ANC goes back up.

Some other news...we are quite busy coming up with all that is going on.   We have all of Emily's scans coming up, and I saw someone use the word scanxiety, and you know this word is definitly a great word to use, because I definilty can feel the anxiety about the upcoming scans, because I just want to see everything gone.  Clear, NED!   Some of the scans are starting this week.  She has a 24 hour urine test that she is currently doing now to test her kidney function for the Stem Cell Transplant coming.  Stem Cell Transplant is scheduled for July 15th.

Prior to Emily's admission for Stem Cell, we received the best news last week that Emily's Make a Wish to Disney World had been approved and we were scheduled to go on July 6 through the 12th.  I can't tell you how excited we all are about this trip and how we are looking forward to forget about that word "C" that has been so much consumed of our lives and have a good time, is needed.  We are all looking forward to this and Emily is overly excited about it as well.

Happy Father's Day to Emily's wonderful dad.  He would do anything for us and has definitly showed that throughout this.  Doug, we love you very much.

I'm beyond exhausted and heading to work tomorrow morning, so I need to get a little bit of sleep and I know the nurses will be in soon to do a CBC and possibly a blood culture.  And if platelets are still very low, they will need to do a transfusion.  So, I should really try to get some rest now.

Have a good rest of the night and hug and kiss your babies and love them.

Love to all,

Thursday, June 16, 2011

Almost done at the clinic...Thursday, June 16, 2011

It's been a very long day in the clinic! I'm exhausted and my head is killing me! Emily is sleeping! We have been here since 1030 this morning and talked with Dr Gowda about the evening before and where he felt things were! He checked Emily out and everything looked good!! Still no fever and also looked in mouth and still no mouth sores! So looks like for stem cell we will be using both glutamin and traumeel!  Dr Gowda ordered blood for Emily since her hemoglobin was so low last night, another round of antibiotics and more blood cultures!   Thankfully at this point we are just waiting for the blood transfusion to finish which should be about 530pm and we will put her on some more fluids at home just to keep her hydrated!  Hopefully she stays fever free!

We should be leaving the clinic in about another half hour and then will be off to pick up the girls! And then off to make some dinner and spend some time with the girls!  

Please send your thoughts for a quiet and relaxing weekend with the family and no more fevers! Hug and kiss your babies and love them with all your heart!

Thursday, June 16, 2011

Well we got home at 415 am last night and needless to say we are exhausted! It means no sleep hardly! But last night when we arrived at the ER Emily did not have a temperature! But they went ahead and did blood cultures on both lines and then did a CBC to see where her counts stand at that point! It wasn't until 230 am that we found out her WBC was .1, hemoglobin was 7.4 and platelets were 94. So everything pretty much bottomed out!  They then wanted to keep her overnight which at that point mommy and daddy were not happy and spoke up! Emily didn't have a fever, we had conflicting readings just like we explained upon arrival with no temp while being there the entire time!  I didn't feel it was necessary Emily stay and they worried something could happen to her and I explained if I was worried I would never suggest to take my daughter home unless I truly felt it was necessary!  Finally they were in agreeance but also becAuse Emily has clinic this morning so she would be heading right back! So they gave her a dosage of antibiotics and sent us on our way home!

This morning no fever! All of us are just exhausted!! And heading to clinic shortly to see where she stands!

Thank you so much for all of your love and support last night!

Much love!

Sitting in the ER...Waiting...June 16, 2011

So, no sleep for tonight yet, its 1230 AM and we left for the hospital about hour and half ago.  Here we sit in the Pediatric ER.  Emily has had a very conflicting temperature between mouth and under the arm.  The last was 101 in her mouth and then 97.7 under her arm.  But we would rather be safe than sorry and brought her to the ER after talking to the Oncology team. When we got her her temp was 97.4, so 98.4 since they add 1.  So, here we sit just waiting for the CBC to come back and they did go ahead do blood cultures to get those out.  Doug and I both sit here exhausted and hungry.  Thanks to pop for coming out to the house to sit with Brianna and Jessie.  

Will keep you guys up to date.  Hopefully we will know something soon!  Hopefully it will be hey lets go ahead and give her antibiotics, counts are low, but temperature is fine and send her on her merry way.  That doesn't ever happen for us, but maybe it will tonight.

Send all the positive vibes you have....

Tuesday, June 14, 2011

Tuesday, June 14, 2011

hank you everyone for you sweet messages for Emily and saying have a good weekend camping.  We read every message, so again thank you!
Its Monday and we had a great weekend. But the weekend is over and it is now back to the real world.  I would have to be honest and say you would never know that Emily had chemo last week because she is just so happy and eating and doing great.  However, remembering this is exactly how she was after Round 4, it still worries us that she will get a fever and land herself in the world of hospital for another 9 days or so.  So, we are just being extra careful and trying to keep her away from the nasty ol germs.  Being so careful to make sure that she doesn’t get sick, Jessie has the sniffles, runny nose bit that last night I took her to Kid Med, just to make sure she didn’t have anything.  They showed her right ear was swimmers ear and that her she had a red throat, but the red throat could be from the runny nose or the swimmers ear and she most likely had that of common cold.  Unfortunately they couldn’t give her an antibiotic since she wasn’t diagnosed with anything, they did check for strept and right now it shows negative, but the doctor said if she has a fever to bring her back.  So, we are in high mode of making sure that Emily and Jessie don’t have a lot of contact right now to make sure Emily doesn’t get sick and to make sure that really none of us get sick to get Emily sick.  I think what worries us the most is that when Emily’s counts are zero, getting sick could be fatal and that is what worries us the most and we just have to be extra careful!
 Like I said, today was back to work and honestly it is hard to adjust being back and worrying will my phone ring that she has a fever, but it is just one of those things, a parents worry.  A worry to add into the mix of all the other worries that a parent may have.  And while I was worrying if my phone would ring with the fever, my phone did ring today while I was in a meeting and it was Emily’s, oncologist, Dr. Gowda.  He called to report that he received the percentage rates back on Emily’s tumor from the pathology and honestly it wasn’t the phone call that I expected and wasn’t the results that I expected.  He indicated that 30% of it was active neuroblastoma cells, 30% of it was ganglioneuroma and the rest of it was ganglioneuroblastoma.  Of course this wasn’t devastating news, but the 30% active cells isn’t what I was expecting, I understand that the chemo is what has been attacking this tumor, I get that and Dr. Gowda even explained that. For me, it was a bit devastating because it blew me down from where I was just moments before that phone call.   I did call and update Doug and I think we both really thought all of it was no longer with no active cells from the chemo and it worries us that it may mean possibly that there could be some in the bone marrow.   He did indicate that the tissue on the outside of the tumor was clear, which again is a good thing, but of course still worries the hell out of us.  Like I said it wasn’t the call I was expecting and it kind of threw me off.  We start all the rounds of scans and everything next week, and Dr. Gowda did indicate that we should know by July 1st whether Emily is NED (No evidence of Disease) or not before going into the stem cell transplant.  Stem Cell Transplant is not an easy task, so we are just a bit worried about it.  At this time, I'm in such a different place about the scans now that the 6 rounds of chemo are completed, I am getting nervous about the scans that she has to go through.  I want her to be NED before going into this stem cell, so I’m just at the point now where my nerves are starting to eat at me knowing they are coming up.  Over the weekend I had a  lot of unexplained anxiety and honestly I didn’t know what was causing it, today it just all came to light because when I got the call I felt one coming on.
 You know I’ve said this before and I will say it again, I hate cancer.  NO ONE will ever know how we feel on a day to day basis and what we are going through, no one, except for those who have walked or are walking in this journey.  It’s a hard journey and everyday brings on something new and while Doug and I try to stay strong for Emily and the girls, there are just some days that are really hard.  Yes there are days that Doug and I cry, there are days that Doug and I laugh with the kids.  But just overall, its hard to handle any stress of other things when this is enough stress, we just don’t need the added stress and honestly neither does Emily. We are Emily’s biggest advocate and would do anything to take care of her and make sure she is safe from any infection, no matter how small or big.  She is a strong little girl (“big girl” to her) and she amazes us every day in what she can handle and just how well she handles it.  I look at her and she makes me smile just knowing how amazing that she is.   But I have to thank my husband for just being there for me, because today I just had a rough day after finding those results out.  It just kind of of overcame me and really bothered me along with some other things.  Its Doug and I against cancer and we will be there for each other like we have been since the beginning... Overall I love seeing Emily fight, but if you were to ask her what she was fighting for, she would not have any idea.  Emily is strong and I am happy that she doesn't know what cancer is, because we just think the word cancer is too big for her, honestly its too big for many of us.  She is so innocent to all of this and she just fights to be her and honestly we love it.  She is one amazing girl.  Doug and I look at her and she makes this house complete, she may not be our last born because of course that would be Brianna, but Emily really does make this house complete.  She has taught Doug and I so much, and I love what she has done for us!!
 This weekend while we were camping, my friend Penny and her husband and kids came in on Sunday camping at the same place we were at.  I haven’t seen Penny in so long, it was great to see her and to meet the kids.  Her youngest, Ella was 4 and the oldest, Ely was 6.  But they both know all about Emily and hadn’t even met her.  She loved her and it was just so cute.  Emily met Ella at the camp store when they were coming in and honestly it was cute because after they left Emily was just so sweet that she wanted something for her friend Ella.  She always thinks of everyone else before her and at the age of 4 it just amazes me how she is.  She misses Jessie when she is gone and gets upset and Emily and Brianna, they are just so close.  Even Penny commented on them holding hands and Brianna is only 20 months, just amazing.  Emily is really good with Brianna and they are so funny together.  But she is like that at the store, she wants to get something for all of her sisters, and not just herself.  That is just how she is.  Emily has talked about Ely and Ella since we have left.  She bonded with them in that short period of time, but she just felt so comfortable with them.  My hope is that we can get together more with Penny and the kids.
Its time to end this for tonight, I have to get some sleep and head off to work tomorrow.  I'm exhausted and just still just a bit emotional.  Doug and I really just want to say thank you so much for what many of you do for us, thank you can never be said enough.  THANK YOU!  Thank you for just your comments because they mean so much to us.  So again, thank you!
Please remember to love and hold your kids tight.

Friday, June 10, 2011

Friday, June 10, 2011

Emily is home tonight after she was released about 230 pm today! Emily did well today and has done well with this round so far! We are doing 3 nights of home fluids just to make sure all the chemo is out and also to get her fluids in since she doesnt drink all that much! She is happy to be home so happy that she wanted another camping weekend! So we are at yogi bear for the weekend!

Good night and continue to think of her and hope she doesn't land herself back in the hospital with a fever!

Almost done with Round 6

Its pretty early in the morning, but I just finished working so I thought I would update before I went to bed while my eyes are still open.  

It was a pretty sad day around VCU 7th floor today.  Emily had me walking laps upon laps up laps around the 7th floor today, while she rode the IV pole sitting on her Princess Throne (see picture).  At one point we walked past the PICU and a woman came around the corner screaming and crying saying, "He's gone!".  There was several men and woman and children that were in the lounge area there all day, but my heart goes out to that family today and tonight and we are thinking about them.  I wasn't really sure what Emily took of it, however she really didn't pay much attention to it, so that was at least a plus.  Emily and I walked around so many times that we walked by people probably a good 10 to 20 times.  Emily and I ran into Astrid, which is Allison Rippy's mom (Allison is going to BMT at the North Building right now) and we were talking about how things were going and what she thought of BMT.  While we were talking a man walked up to me and had money in his hand and held it out to me.  I thought he thought I dropped it and I replied, oh that is not mine.  And he said oh no, I would like to give this to you so that you can go and get a toy for your daughter.  My reply was no thank you, but he wanted to give it to us and all I could say was, Are you sure?  I thanked him several times and thought what an amazing man who behind him was a woman and a child which I would assume was waiting for him that would do something like that.  So, thank you so much so the man who went out of his way, our family really appreciates your kindness. Like I said I was pretty shocked that it happened, but very appreciative and we are still very appreciative.
Riding around on the IV Pole sitting on her Princess throne

Thursday went well with Emily.  She had a pretty good day, no more getting sick, however mostly I noticed she was more tired yesterday than she has been all week.  She is still doing very well and taking her Life Mel Honey, Glutamin and Traumeel and she is still eating, just not eating as much.  So, we are doing pretty good so far.  Dr. Goddar did request to have her counts checked just to make sure she didn't need any transfusions and if she needed anything at least we could have gotten it done yesterday instead of waiting until the Friday when she was to be released.  Her counts came back still very good, so she didn't need any transfusions and she just keeps ticking along.

Emily is still on track to go home Friday.  Chemo should be finished around 130 so we were told that we should be able to head home no later than 3ish.  Last night Emily had a melt down while Daddy and Brianna was here crying to go home.  This was the first time all week Emily actually cried to go home, so she did really well on that.  We were able to calm her down and I was rubbing her head, but she was ready for daddy to take Brianna home because Emily was tired and ready to go to sleep for the night.  

Looking forward to getting back home and spending some time with our family.  We miss a lot of family time while we are here and the rooms are so small, you really don't have a lot of room for visiting and stuff, so it makes it difficult.  But we enjoy the time that Daddy and Brianna are here with us because we do miss them so much.l  Thank you Daddy for Dinner tonight. 

I love her!
Today I was a bit on edge because we had student nurses here all day. I woke up to 2 nurses (or whom I thought were two nurses) holding the chemo that was hanging up discussing it and I realized it wasn't red anymore.  So, I was a bit freaked out and started asking questions when then I was told she was only a student nurse and the other nurse was the instructor.   I just felt on edge today while they were there, watching their every move and making sure they are doing things right, but they came in here an awful lot to clear the pump.  I mean it was every hour on the hour, which was a bit overboard.  Anyway, I spoke to our actually nurse and told her I didn't feel comfortable that the student nurse actually do the blood draw (and mess with Emily's line especially while on chemo when her counts are going to be dropping soon...I would rather be safe than sorry) but our nurse understood and told the instructor and the instructor actually did the blood draw and as you know I watched every moment.  I just can't chance a student nurse not doing something they are supposed to do and it be on Emily.  But there was several times that they got me all nervous, so needless to say at the end of the night I was happy that they were going home and we would only have Emily's night nurse.

Well that is all I have for tonight, eyes are starting to get very heavy now.  Thinking of all those family who have lost their children and all the children who are fighting childhood cancer. Please make sure you love and hug your babies!  Good night. 

Wednesday, June 8, 2011

Wednesday, June 8, 2011

Emily this morning riding indian style on the  IV Pole.

Its Wednesday night, and we are two days into Chemo and tomorrow at 1230PM, Emily will have only 24 hours left of Chemo of Round 6 and Emily should be released by no later than 3PM on Friday, as long as all goes well.  

Tonight I am laying here with Emily rubbing my arm and watching TV. She had a good day but by 3 pm she said her stomach was hurting. She hadn't had a BM in 2 days so I was thinking maybe it was that.  By 6ish she had her Zofran and a hour and a half later she was eating chicken noodle and then got sick.  I hate watching her get sick, but she seemed to feel better afterward. Jessica and her "friend" Seth came by to visit about the same time Daddy and Brianna got here and it was right before Emily got sick.  Emily had some good laughs with daddy before he left to take take Brianna home to go to bed.

We still hadn't gotten news of what the pathology was from Emily's surgery so when I emailed Dr. Gowda he said he hadn't heard anything, so I emailed Dr. Mattei and he later in the day he replied with the report and also asked how Emily was doing.  That is amazing.  I replied and told him I was very happy that we found him and that we are very happy with what he did and how well he took care of Emily.  I told him the only thing that we regret was not getting a picture of him and Emily together. He even replied to my thanking him and said Thank you for your kind words.  I am honored to be a part of "Team Emily". and to please tell her he said HI!  So, tell me friends and family is that not an amazing man or what?  The pathology report came back showing that the Chemo is doing what it is supposed to do.  The report indicated, "The current specimen, post-chemotherapy, shows maturational changes typical of treated neuroblastoma, with fields of ganglioneuroma, ganglionueroblastoma and neuroblastoma differential."  The only information that Dr. Gowda didn't see was the percentage of what was neuroblastoma and what was ganglio.  So he is going to see if he can get that information.  We are thankful that Dr. Mattei was able to get all of the tumor and Emily was safe and sound and she is doing great today post surgery.  I am anxious to get these post Round 6 scans done to see if she is NED (No evidence of disease), honestly I'm pretty nervous about it but Emily is kicking butt and I know she will be just fine, it is just getting through all of this. Dr. Gowda said this doesn't change the protocol, which we didn't think it would, but that it shows that the chemo is doing exactly what we want it to do.  So, that is positive. Doug and I are confident that Emily will beat this, however I can tell you that I am still nervous about it all!  

Where are we going after Round 6?  Emily has to go through all of her scans, we have a 24 hour urine test, she also has to have her kidney check, EKG, hearing test, bone marrow aspiration and everything else. So she has a busy schedule about 2 weeks after this chemo and our hope is that 4 days after she is finished she doesn't land herself back in the hospital for 9 days like she did before.  And guess what? When Emily is released on Friday, that will be the end of Round 6 and end the Induction Phase of the protocol.  We will then move into the next part of the protocol after the scans and be in the Consolidation part of the Protocol. Consolidation part is where she will do the Stem Cell Transplant which is receiving her own stem cells (autologus) after 5 days of extremely high doses of chemo and that will all be done in the BMT unit of the hospital so it will be a different location and nurses than what we are used to.  So, we are not far from that, but we have a lot going on in the next coming weeks.

Thank you to Child Life for wrapping a present for Emily's birthday and bringing it to Emily. It was really sweet to think of Emily for her birthday even though she wasn't in the hospital.  Thank you so much. Belle the Princess Doll, such a cute doll and she evens sings.  Dad and I told her she will get to meet Belle in Disney World when we go.

Closing out for the night so I can do a little bit more work tonight.Goodnight and make sure you kiss your babies.

Tuesday, June 7, 2011

Tuesday, June 7, 2011 Part 2

Just a quick update, as I am exhausted from working late last night and then trying to update caringbridge and I would like to work a little bit tonight as well!

Emily really amazes us, because today she has been in an absolutely great mood.  She has been smiling and talking and just having a very good day. At 1010AM this morning they ended up having to give her a bolus (a large dose of fluids over 30 minutes) to get her to potty and see where her specific gravity was.  The last check was at 630 AM and she still was not there.  Emily was awake from 5 to 7 this morning and then fell back to sleep. So by 11AM, Emily woke up saying, "I have to pee!" She finally made her counts and they could get the chemo started, started finally by 1230 after the medicines and all were given.  Not that I really wanted to get them started, but they needed to get started so that she can leave by Friday.  

But if you ask why I say she amazes us is because she always does what we want her to do.  She may give a little fight sometimes, but she always does it.  Today she gave no fight, she took her Life Mel Honey and she did everything else each time she needed to take it for me. We are still using the Traumeel and this round we are trying Glutamin, so we are using both and our hope is that it will cut out those nasty sores she had in Round 4.  I know so many others have gotten them worse and hers were at a minimal, but none at all would even be better.  So we will test how this goes and see what happens.  If they are even more minimal than they were from Round 4, we will be using both during Stem Cell.  Emily had me walking a lot today, many rounds around the 7th floor halls.  Tonight I am feeling it on my foot with the broken toe, but if it makes her happy we will do it.

Daddy came tonight with Brianna and brought Pizza, this is Emily's new fav for the moment, so she was very happy about the pizza from her favorite Whole Foods and enjoyed walking the halls with dad and Brianna tonight.

So far things are going as well as to be expected while we are here, Emily just continues to amaze us as she does so well with what we thought was going to be a really hard time on her.  We can just never tell with her.

Tuesday, June 7, 2011

Update to an update. LOL.

Emily was released within 48 hours of being at CHOP, with the condition that we stayed close until Tuesday,May 30th to make sure all was ok.  Doug went home Saturday to pick up the camper and when he got back into town, Emily was already released and we were ready to go by 5PM.  She was so happy to be leaving and be staying in the camper for a few days.  I have to tell you all that CHOP was an absolutely amazing hospital. It really was, there was so many things that CHOP had that stood outside of the box for Doug and I compared to what we are used to from here.  But mostly, the care that was given to Emily while she was there just above and beyond and they always made sure we had what we needed, and was always there when we needed them.  Dr. Mattei met our expectations and more, he is an amazing man, surgeon and like I said before his compassion was not like most surgeons.  While there we tried to see if we saw any of the others that we had read about, but what was different about CHOP, is that each floor is separated and separated by certain things.  So one floor was Surgery, such as the floor we were on, one was Oncology, but there was other floors as well.  It was awesome place, but we didn't see anyone that we knew by reading.  There was a few that we were on the lookout for, but none that we had seen. 

Children's Hospital of Philly
This is the emergency room.  Emily was on the 4th floor and this was the view in the middle.
This was the Resource center, the library. 
Information board in Emily's room

Like I said Emily was release Saturday night and we headed to the campground to wait things out until Tuesday to be checked.  Emily had a great weekend.  The next day it was amazing, it was the relaxation that we needed and that was to be able to lay in the bed until 2 in the afternoon and never made it outside of the camper until dinner time.  That's right that is what we did.  It was an amazing and relaxing weekend.  

Emily at her birthday at the campground after surgery
Monday was Emily's birthday, she was turning 4 and she was just so excited to be having a birthday.  We were not expecting her to be home because we had expected to still be in the hospital not be back in the camper after 2 days.  Thats right, 2 days. Emily was still in a bit of pain the next couple of days and we went through a container of tylenol after her surgery, but after a few days we noticed it was becoming less and less of that amount of Tylenol that she needed.  But she was doing great.  She  was doing so well that on her Birthday, May 30th (or course we were able to celebrate her birthday) and have her best friend,, Nakeyah there with us. We had cake and ice cream and just enjoyed having Regina, Nakeyah and Tay with us to celebrate Emily's turning 4. Emily is doing great.

Miss Hollywood Emily.  The pink 4wheeler was a birthday present from Nakeyah and Emily just loves it.
After coming home and have a little scare that Emily had bruises around her surgery area and it was a bit swollen, we waited overnight just to make sure that it wasn't anything and also told Emily that she really needed to slow down.  Thankfully telling her that she needed to slow down seemed to help with the swelling and the bruising didn't seem as bad. Things went back to normal for the rest of the week and it had seemed like so long since we had been back at VCU.  

The following weekend, this past weekend, we were having a birthday party for Emily with her friends,, both of her sisters were there.  The hard part was since it is hard to really get to plan things like this with low counts and not knowing when she will have to go in, it is hard to get her friends there.  However, we were able to have a good turnout.  We asked her where she wanted to go and she wanted go to the State Park close to us with the camper and have her friends come there and play on the playset.  Thanks to a great auction, we did get the swing set for the house ordered and we are just waiting for that to come in, so we are excited about that coming in. Nakeyah also came to spend the weekend with Emily and Emily was just so happy to have her there, they re so cute together.  Doug went to pick up Emily Friday evening, while Jessie and Brianna and I got the camper settled in.  It was awesome having nice high counts and Emily being able to have fun and not having to worry about a mask.  It was great.  The birthday party was a lot of fun, Emily enjoyed having one of her friends from school come and a few other people, and it was really a nice turnout for her.  I am really happy that she got to enjoy a beautiful day outside with close friends and family.  THANK YOU all so much for coming out last minute to enjoy the day with Emily, it really meant so much to her.  (She has been telling her nurses that she has had two birthdays, cute). 
Camper all decorated, waiting for friends to come
Happy 4th Birthday

Emily blowing out candles 
So to end the weekend, Nakeyah had to go back home for school, so Daddy had to take her back to meet her mom.  Emily didn't want her to go, she loves Nakeyah, they are so cute. Nakeyah is really good with Emily and she is always watching Emily to make sure she is ok and just enjoying her and they laugh and have fun.  Its cute. I spent some time with Jessie and Brianna while Daddy and Emily were gone and got things ready for the next day, meaning packing for the hospital.  I don't like packing for the hospital and I know Emily doesn't like going.  So, Daddy was trying to prepare her for the next day. 

Emily waiting in the clinic
Emily was admitted today to start Round 6 chemo of the induction phase.  Its a bittersweet that she is almost done with this part of treatment, but also the reminder of what she has went through and what she still has to go through. She has been through so much, but honestly she has taken all of this very well and everyday she shocks her dad and I more and more.  Its amazing how strong she is. We were worried that it was going to be a crying ordeal in the clinic, however Emily was amazing.  I took her to the bathroom and she said, Mommy I am going to be grown up and be a big girl and not cry.  Wow, Emily you go girl.  And she did just that, she didn't cry. Amazing little girl, her daddy and I are just so proud of her.  When we came up to the room, we played with her little friend Bailey for a little while and they rode around the halls on their poles.  I should have taken a picture, but the thought was passed me at the time.  Now  we are just waiting for her urine specific gravity to be ready and get things together for starting.  Its pretty exciting, but also a little bit nervous about what is to come and what it may bring with side effects and things like that. We were hoping that the chemo would have started last night so that she would be heading home on Thursday evening, but her specific gravity is still not where it should be yet.  It is 7 AM and they just checked it a half hour ago and we are still waiting.  In several ways I am not in a hurry, but I hate having to see this horrible stuff go into her body, but at the same time, I want it to hurry so that we can get this over with.  Once this is done we move forward with her scans, all of the scans to see where she is at and then we move into Stem Cell.  Stem Cell is honestly not one we are looking forward to at all.  Thankfully it is her own stem cells, but they still have so much to go through with that.

I want to send out a huge thank you to so many of you, and I tried to explain this to someone yesterday, we truly appreciate everything that you all do for us.  Sometimes I feel like I can't say thank you enough, I really don't, but I try to in all the many ways that I can.  So thank you all so much for just being an amazing community.  You truly find out who you friends and family really are when you go through something like this and I really want to thank those who have just been so amazing to us.  

Don't forget that we have Team Emily Magnets, if anyone wants any.  Great way to support Emily and also a great way to tell everyone about her.  

Well, I am going to end it there, Emily and I were exhausted last night since the night before Brianna thought keeping me up all night was a great idea.  Emily was asleep last night before I even was close and then when I went to update caring bridge I woke up this morning with a million P's on this page.  HAHA.

I am going to post this on http://www.emilyhubbel.com and it will have lots of pictures. Enjoy!

Saturday, June 4, 2011

Saturday june 4, 2011

Doug and i want to send out a huge thanks to our good friends and Family who came out to the campground today to have Emilys 4th birthday party!  We had a great time, thank you! 

Also want to send out a huge thanks to Dougs cousin Mike in Massachusetts
For having a prayer said at Lebanon Valley speedway with thousands if people there! How Awesome is that so many are thinking if amazing Emily! Mike you have been amazing, thank you!  Race car driver 87 also has had a Emily magnet painted on his racecar! AMAZING! Thank you all we love you guys so much!

Thank you in more ways than we can ever say thank you!

Please love your babies and kiss them and hug them!

Thursday, June 2, 2011

"Team Emily" Car Magnets are HERE!

"Team Emily" Magnets are in!!

Click the link above to make a purchase. We are selling these for $6.00!!. We would love for your to support us at the same time while supporting Emily on your automobiles. We want to get the news out about her. So, please share these and tell everyone about them.

Thank you so much for your amazing support!!!!

Thursday, June 2, 2011 (Day of Surgery and After)

I know this update comes to you all late, and I apologize for that, however life has been very busy and with limited access to internet service except through my iPhone or iPad makes it hard.

Wednesday and Thursday was a pretty rough day for Doug and I! We never told Emily what she was going to have to go through the next day because we knew she would be upset about the stay at the hospital and would cry about it and we just wanted her to be happy up until the time she had to go. So, we told her that we were going to the hospital but left it at that. Our ride to the Ronald McDonald house was interested, the GPS took us through the worst part of Philly and the longer we were driving through the area, the more uncomfortable we got. The Ronald McDonald (RMH) was beautiful and amazing however it was the prettiest place in the worst part of town. It also wasnt the RMH that was connected to CHOP, it was connected to the other hospital in the area. Emily was crying and didnt want to be there, all she wanted was to get something to eat, so after arriving there at 810PM and checking the place out and hearing Emily more upset of the time we were there, we decided not to stay there and find a hotel. We knew once we left RMH we wouldn’t be able to come back, because they only bring people in up until 8PM, but what we didnt know was just how expensive the hotels were in the area. However we found a place to stay, stopped to eat dinner at Whole Foods and made it a night at the hotel for only 10 hours. A really good friend of the family, Regina (more like a sister to Doug, since he grew up with her) came out that night as well and met us at the hotel and spent the next day with us.

That night Doug or I didnt sleep well at all, but honestly who would knowing that their child would have to go through a major surgery the next day. We got up and got ready and after taking a shower, I walked into the bathroom and fell and my toe got caught underneath the door. From the shower the water sprayed all over the floor and it was wet. Needless to say on a day that was really important, I broke my toe. NICE. And I woke up Emily from crying out about my foot. Emily did very well about having to get up and get ready.

Emily loving on Mommy!

Emily loving on Daddy!
That morning we were beyond nervous and scared. However I can tell you all that Doug and I definitely knew we chose the right place to take Emily and have surgery. Dr Mattei is an amazing Doctor and we could tell this before the surgery was even done. His bedside manner was not that of a doctor, it was of a very compassionate man who looked at each child as if they were his own. I cant tell you what that means to us and for any other parent. He met us back at the room as soon as Emily was taken to the room and started to talk to us and tell us what to expect, the anesthesia doctors came in and also did the same. While we were waiting Emily fell asleep on me which actually worked out nicely. Because they normally give the kids giggle juice and then they give them an iv in the arm but they didn't have to since she was asleep.  After I laid her down and she was out, Doug and I both kissed her as the tears were rolling down our faces! This day reminded me back on December 23rd when Emily was going through her very first surgery and we cried because we didn’t want them to take her. The anesthesiologist looked at both Doug and I and said she would be well taken care of...we both cried and held onto each other for a minute and then got ourselves together and then came out to meet up with Regina.  We left Emily at at 845 AM and tried to keep our minds on the task at hand. We received our first update at about 1030AM, we were told that Dr Mattei had just started working on Emily about 950AM and so far she was doing great, she wasn't having any problems.  The IV's were placed in both of her hands with no problems and she was doing great.  She had to receive both platelets and blood because they were both low, but her WBC was still great.  She was not eligible to get the epidural since her platelets were so low and it could cause problems, so they gave her morphine. Doug and I both worried about her and worried about the recovery and very worried she would be mad that we didn't tell her about this. At 1110AM, Dr Mattei came walking through the doors and said, "we removed all of the tumor and Emily is doing great.  We are now closing the cut back up with the stiches underneath and using the glue. Emily was also a bit dehydrated when she came back to them, so they were going to keep an eye on that"  Doug and I were both very happy to hear they were able to remove it all, and everything went well.  He did tell us that the tumor was a little difficult to remove off of the kidney and the aerta and that it looked like the tumor was very stiff because it appeared it was dying off.  That was the first we had heard it was even touching the kidney, so that was news to us.  Dr. Mattei did remove the adrenal gland, but we had already known he was going to do so. That wait for them to call us back to Emily, seemed like another eternity.  Finally at 1230PM, we were called back to see her.  We couldn't wait.  

We both cried when we saw her, not because she didn't look good, but because knowing what she had just gone through and just wanting to talk with her.  The nurse was talking us through everything and letting us know her numbers and everything looked great.  They said they would be moving Emily to a single room on the Surgery Inpatient.

Emily slept most of the day Thursday.  When we talked to her she would hear us and answer by nodding her head or whispering, but that was really it.  Emily was laying on her side when we came to her and we had to move her to her back since she had been laying on her side for so long, and I move her to her back.  She had IV's in both of her arms and the frustrating thing about that is that she just wanted to rub my arm and couldn't. I even tried to the bandage off thinking it would help, but the IV was in the way and she was afraid it would hurt.  She she would have to tilt her arm and could only touch with her fingers.  

It was a hard day for Doug and I, I didn't answer any phone calls because I just felt crummy and cried off and on all day.  I would look at Emily and cry and then Doug would remind me that they got it all and she is in a great hospital and they are taking great care of her. It was just really hard to see her in pain when she would have to move around or even be scared when the doctors would come and have to pull up her shirt and look at the incision.  She would flip out and get scared and cry out, but then would realize they are not going to touch her. 

Friday she was still very sore, but much more awake.  She actually woke me up early in the morning and asked me why they put two IV's in her arms.  We laid on her bed and talked for about an hour and then she wanted Daddy to come and lay with her.  It was cute.  So he layed with her and then about an hour later, she wanted mommy to come back and lay with her.  Friday morning she had to actually sit up and at one point when they took the foley out she would need to get up and go potty.  Emily sat up with Doug and mines assistance and did amazing just like she did before back in December.  We only gave her the medicine that was like Tylenol, but no Morphine and we knew we would use it if we needed it.  But she didn't appear to show that she needed it.  

I have been holding this post forever trying to get it all finished, so I thought I would go ahead and post this and post the rest later.  I still have more to talk about.  Emily is doing great though and she is home and resting and recovering.  Emily is one strong and amazing kid, Doug and I are so proud of her.  More to come later.