Surgery Update

Emily went back about 845AM and surgery started at 950 AM, at this point we are just waiting.


Please continue to send all your love and thoughts. Dad and I are both beside ourselves. Just wanting the time to pass quickly so we can see her.

Mom

Wednesday, May 25, 2011 (day before surgery)

Mondays visit to CHOP was comforting to Doug and I...meaning we definitely feel like we made the right decision on taking Emily to Dr Mattei! We arrived late a little worried that we would have missed him since he was flying out, but he was still there! We were able to meet with him and he walk us through the surgery! He seems to feel confident that he can remove all of the tumor and while there he will look at the lymph nodes as well just to make sure that there isn't anything there. He did state he was 99% sure he would be removing the adrenal gland because most oncologists want it gone so there is hopefully not a chance of relapsing! We also met with the anesthesia area and the nurse practitioner came to meet with us and go over questions that they had and questions we had! Then we went to the oncology department to get Emilys counts checked! By time we finished all that it was 430pm! We all still needed to eat, so afterwards off to Whole Foods! Obviously after that it was a long ride back to Virginia! Brianna came with us so it was a bit overwhelming because she was fussy here and there but overall Doug and I feel like we have made the right decision on taking Emily to CHOP for surgery!

Yesterday we prepared for getting ready for our trip to Philly! We checked with Ronald McDonald house and were told we would need to call about 10am to see if they would have any rooms for us to stay in! That makes it hard because we were already debating on if we should bring the camper! There was so much that needed to be done , I was able to prep a few meals, make dinner, wash clothes and start packing!  Doug and I have been exhausted, so exhausted mentally, physically and emotional! The past few nights we have just passed out! Last night we were laying down in the living room and fell asleep until 630 this morning!

Today and right now we are heading to the Ronald McDonald house to stay the night and then be at the hospital at 715 am for surgery!  We are both nervous and anxious about the next day ahead of us but also ready to get this part of this protocol over!  We are very thankful to my dad who is taking care of Brianna until Saturday for us and for Regina who is going to meet us at tonight and be there for us for surgery to support us! It really means a lot to us! 

Doug and I are asking that you send lots of love and thoughts our way and be thinking of Emily during this time! It really means a lot to us! I will try to update tomorrow once Emily is doing well! 

Remember to love and kiss your children as often as possible!

Monday, May 23, 2011

This will be the 3rd time trying to get this entry in hopefully I won't accidentily hit the cancel button again.

Friday morning Emily had count checks at the clinic! It was great to see her counts went from .3 to 1.6 WBC and she was just a little but greater than 1000 for her ANC! So Dr Gowda okayed her for surgery!

This past weekend we enjoyed the weekend away...away from our house and away from the hospital in our camper at a campground! We headed to VA Beach after work to take some time away from our new "normalcy" and just have a good time! So we let the girls ride bikes, play ball and just have fun! It was different to go camping and the pool now be open and we didn't get in the pool. However no one made mention of it! We drove the golf cart around the campground and looked at campers and just had a good time! Saturday night we took the girls over to the gameroom to play some games and right outside the door of the gameroom they had a DJ and a party for all the campers! Emily was having a great time playing games, dancing and smiling and it was great to see her smile! Jessie and Brianna were having a good time as well so it was nice to get that time away! Emily even talked to auntie Tricia and uncle Glenn on the phone, which it has been a while since she has done that! We were thankful for that bit of time together as a family away from hospital!

Today we are back to reality away from camping and driving to CHOP! Emily has pre-op today and we have done nothing but hit traffic along the way which means we will be late! I have called the nurse to see if we can move the appointment to a couple hours later but I haven't heard back at this time! Today is a day that we prepare for what is to come with surgery and I can't say that I or Doug is not nervous about it but we also want to get this part done and over with! It's also something that we haven't told Emily about because all it will do is get her scared and cry! She is done with all of this and so are we...but we also want to get all of this out and hope that it never comes back!

We want to continue to thank our amazing community and family and friends who walk along with us! Thanks to Melissa for working on the auction online on facebook so that we can have a swingset for the girls, thankful to friends who do things to help and thankful to organic meals that are brought from time to time and thankful to family in Massachusetts who is working on a fundraiser in Doug's hometown! It is amazing how family and friends pickup to help during a time like this and we can't say thank you enough, but it does mean a lot to us! So a huge thank you!

Well I made it through what I wanted to get out...my hope is to update more tonight after we meet with Dr. Mattei and get the answers to what is to come and after we make the haul back from Philly!

Friday, May 20, 2011

This past visit to the hospital was probably our shortest visit that we have ever had, which was nice, however it would have been nice had we not even had to stay at all.  Tuesday I went to work and when I got back to the hospital, Emily has spiked another fever after having gone over 24 hours of not having a fever. We thought we were in the clear and would be able to go home right after the CT scan at 1230 on Wednesday, but she spiked to 101.6 at 8PM, so they did blood cultures, urine cultures and another CBC to see where her counts where. Tuesday evening her WBC was 2000 (.2) and her hemoglobin was 6.8.  So, Dr Massey got called at home and she wanted Emily to get a blood transfusion which started around midnight. Emily didn't have another fever over night.  She woke very early Wednesday morning and of course she had been MPO'd (which means no foods after a certain time) and was starving at 5 AM.   I was able to hold her until about 630 AM and then she just let loose.  It was a very long morning because she cried about everything, but most of it stemmed from not being able to eat and she was starving and wanted to eat "NOW".  There was nothing that I could do to calm her, so she used her lungs, her legs, her arms to say how she felt.  Needless to say it was a long 5 hours until it was time for the CT scan and honestly nothing I did could get her mind off of eating.  However she gave me about an hour for us to watch Justin Bieber and talk about how much of a hunk he is and his heiny, she laughed for about an hour and then after that, she started again.  This time asking for home, wanting to eat chicken nuggets, I want to go home, I don't want to do the scan and just in general irritated.They were nothing that I could do to calm her, so we ended up having to get her benadryl and while I didn't like doing that, she was screaming bloody murder and her scream could be heard all through the halls....all I wanted to do was to hold her and tell her I was sorry I couldn't let her eat and sorry she had to be put through this hell in general, but nothing worked not evening the lovings and hugs.  I felt so bad and yet she had every right to get upset about not being able to eat.  She has lost weight from the chemo, she had every right to get upset, because she needs to eat.

We did get the CT scan done, and then had a another CBC and Emilys WBC was 3000 (.3), hemoglobin was going up, but platelets went down again.  So, she had to get another transfusion of platelets and after that she would need another dose of antibiotic and then she would be set to go home, as long as no fever.  Emily went home around 7PM, she was so happy to go home.

Plans moving forward, 

Friday Emily has a count check to see how her counts are.  

Weekend, We are taking the girls camping to Va Beach for the weekend for some time away from hospital, time away from choas and just to enjoy to be with family and have a good time.  

Monday, Emily has a Pre-op appointment at CHOP at 1015 and to talk about whats going on, what to expect, where to go and all of that.  We will drive up and then drive back later that night. 

We are not sure if leaving Tuesday night or Wednesday night, but...

Thursday, Emily has surgery.  

I'm not looking forward to the surgery and the birthday of where she will be in the hospital, but we will celebrate a wonderful Happy Birthday when we get back.  Please make sure if you know Emily, don't talk about her birthday face to face on her birthday, just because we don't want her to get upset about it.  She won't know that May 30th isn't May 30th, which means any day could be May 30th based on what we tell her.  We just want her to enjoy her day whenever we are able to celebrate it.  Our hope is still to have the Playset up for her, she will be so excited.

Well, it is after 2AM and I have to work in the AM and then Emily's appt, so I'm exhausted, its bed time.  Got a lot on my mind with processes moving forward, but I think all of that is just normal.

There is an auction going on over on facebook -- Funds for Emily Hubbel, just like the page and check out the auction photos that have been posted. Auctions have started already and it will end May 23rd, so hurry over, for a great cause!!. If you are interested in donating an item, please contact fundsforemily@gmail.com, still accepting items.  Check out theAuction here

Monday, May 16th update

I'm trying to look at the positive side of things but it is hard to when all I want to do is be a big baby and lay on the floor and scream, kick, punch someone or something because we just found out she is being admitted! When we got here her fever had gone down to 101.6 and the doctor noticed her left ear was red! It was our thought that she might have an ear infection and that be the culprit! But can't say for sure because her WBC is 1000 (.1) not yet able to register a ANC! This means she won't be ready for surgery this week!  My heart aches as this morning she was crying no fever I don't want to stay at the hospital! It's like being on eggshells shhhh don't say upstairs she may hear! Again o fear it will be benedryl again! 

Right now we wait for platelets because they were 7000 (.7) so she needs to get a transfusion! Then she will be admitted to a room and get another dose of antibiotics! She has received one here in clinic! Let's hope that this fever breaks and she will only be here for a few days!

Now the part that kills me is knowing next weekend is a holiday weekend and Emilys birthday on may 30th! Emily will now be scheduled for surgery on may 26th it sounds like! Which means she will be in hospital on her birthday! Several things suck for that.... Her wooden swingset will not be up and the birthday party for 4 gets old will not happen! I'm trying to be strong and hold together but it's hard to! Where is the wall that I can put a hole in, where is the tissue I want to cry in and Emily will not see! I know that things could be worse but this is hard on us!  Sorry for being upset but this is hard, hard on us, hard on Emily!

Will keep it updated on what's going on! They dis blood coultures also so those take 24 to 48 hours! Please send hood vibes for short time here, good vibes that dad and I hold it together and good vibes that Emilys counts rise quickly!

Monday, May 16, 2011

Today we sit in the clinic earlier than expected because Emilys appointment was not until 1030 am! Woke up this morning and Emily was burning up! Took her temperature and it was 103! I woke Doug up to show him and he saw it too! So we got the girls ready, gave Emily a luke warm tubby and the temperature went down! Emily was screaming no fever I don't want to stay there! No fever!! 

So we got here to clinic and instead of being in the fishbowl we are in a room away from others! They checked her temp and it was 101.6!!!! My second thought for this morning Fxxx!  Yeah that is what I am thinking! We have been so careful, Emily has gone no where since she was released from the hospital on the 6th except here...no where! So Emily is asleep on my lap while i wrote this here waiting for counts to come back! My hope is that her WBC and ANC are up and they put her on an antibiotic and send her on her merry way! Because if not she will have another scene which will cause benedryl again and I dont want to be there! 

So please send your positive thoughts that all is good! 

Friday, May 13, 2011

Its been a while since my last update here, but just a lot happening and just trying to keep up with day to day!

Doug and I used to feel that we were both normal people, normal parents, normal laid back people that were leading normal lives. We, Doug and Shannon, met and we fell in love with each other and decided to get married, like normal people do and have children together like normal people do.  Both Emily and Brianna were early (Emily being 5 weeks early and Brianna being 6 weeks early), but both were very healthy and loving girls.   People who see us walking down the street, see us out in the world anywhere, stop by the house, we appear to be just like normal people that lead normal lives, but until you take a walk inside of our lives, our minds, our world... or unless you know us personally, you know the Hubbel House doesn’t live a normal life.  Back on December 23, 2010, that day changed our lives forever from being normal.   We aren’t happy with what we have been handed, but we will deal with it the best way we know how and as well as to be expected.  We are overwhelmed with all that is coming our way and what gets thrown at us on a day to day basis, we are stressed with knowing what we know, we are scared of anything and everything that could happen, will happen and may happen.  We are both hurting terribly and worried sick about what our daughter has had to endure and what she has coming up to deal with.   Everyday that I am able to work, I worry that my phone will rang and that Emily will have a fever and we will have to go and get her to take her to this hospital.  Sorry for the little vent here, but Doug and I both are having a very hard time with this and just trying to grasp what is going on in our lives and what Emily's sisters have to deal and overall what Emily has to deal with. We just wish that we could go back to our normal life that we once had and enjoy time non cancer. I know that it will never be that way again, because we will worry for the rest of our lives, we will be anal about germs and who comes around our children and our house, its just something that is now part of us that now we have to learn to deal with.  We read along with so many journey's of other families who are also dealing with this and feel the ups and downs that they do, and its just scary to know how horrible this disease is.  Its wrong that 4 that we know of have lost their lives to this disease within the last 4 weeks, I'm sorry but I can't understand why a child has to be put through that, it isn't fair and isn't fair that a parent has to lose their child.  I can't sit here and lie and say that Doug and I have never thought about that, because again I would be lying, it scares the crap out of us, but it is reality of this disease, however we know that Emily is strong and she will beat this.  She will beat them and show them who wears the pants in this house and that she can win. Doug and I both say, we HATE CANCER.  Hate is a strong word, and hate isn't a word that we use in this house, but we use it when it comes to cancer.  We honestly don't even like to say cancer, because those words, just seem ... seem ...  a word that I can't put into a sentence...

This week at home with Emily has been nice to be at home and no interruptions of a fever (knock on wood) so far to take her back in the hospital.   Emily was feeling pretty lousy upon getting home, still exhausted and sleeping most of the day and getting up a few times to get sick, however nothing like round 3.  Mothers Day she did have a few more ups but still overall was exhausted, by Monday she was somewhat getting back to herself except for the eating and drinking.  We had her on fluids over the weekend and requested to have them a few more days because of her not eating and drinking a lot.  By Thursday we had a meeting with Dr. Goddar and after the meeting, her energy had diminished big time and all she wanted to do was to sleep again.  All day Friday she slept and was up here and there.  We did ask for fluids again for 3 days because she is still not eating and just seeing her exhausted, we know she needs to eat to get some energy and gain some weight. Even the babysitter can see that she needs to gain some weight, but we are trying. 

Tonight we got the movie "Never Say Never" with Justin Bieber and was hopeful that Emily would have enough energy to watch it and maybe even have some popcorn.  After Brianna went down to bed, Emily was asleep and I went to get her and bring her in the kitchen to start her fluids for the night and she said, "I want popcorn" and was ready to watch Justin Bieber.  She tried to stay up for the most of it, and it was great to see her watch it and even sing some in a very light tone.

We got word from CHOP that they could schedule surgery on Monday, May 16^th, but we were not so sure that she would make those counts being that it would only be a week off from Round 5 chemo.  We knew would we find out when we took her in on Thursday to meet with Goddar about Stem Cell Transplant talk. So we tentatively had then put in on the schedule, so we could leave over the weekend.  However, Emily's counts had other plans, which is what we thought would happen, that they would be too low to move forward.   As we had guessed, they were too low to move forward to leave over the weekend.   Dr. Gowda felt that her counts may even bottom out more over the weekend.  So, now we sit and wait and see what happens when we take her back  on Monday to have her counts checked. 

Since her counts are still low, we lay low and enjoy time together as a family and stay away from the germs...just to help you all see what we try to keep Emily away from, here are some precautions:

Steps to help prevent infection when neutropenic (low counts):

• Hand washing, hand washing, hand washing! This includes the patient and those around the patient.
• Avoid large crowds where you may come into contact with germs, such as shopping malls, church, or public transportation. If need be, go at off peak hours to avoid the crowds.
• Avoid anyone who is sick (including colds), including other people in their household are sick.
• Avoid children or adults who have recently received vaccines.
• If you have a central catheter (PICC, Port, Hickman), use caution to keep it clean and dry. Check the area for redness or tenderness (soreness) daily.
• Follow an oral care regimen.
• Wear sunscreen (SPF 15 or higher) to prevent sunburn.
• Use only electric razors to prevent cuts.
• Use caution to avoid any cuts or injuries. (avoid contact sports, wear gloves for household chores)
• Do not use rectal suppositories.
• Do not eat raw or fresh vegetables
• Stay away from constructions sites
• Stay clear of flowers which have fungus
• Take a bath daily to rid of germs on your body
• (There are many more, but here are just a major few)

Well, I'm exhausted, so love to you all, kiss your kids, hold them tight and tell them you love them.  Remember don't complain about the small things, enjoy life because things can change so easily!  

Good Night.

Saturday, May 7, 2011

This was Emily in her outfit going home that Daddy got her. 

We got home about 10PM est last night. We probably would have been out of the hospital earlier than that, but we had a very unorganized discharge.  However, we had a really great nurse, Diana, it was our first time having her over on Central, but she was great and took care of us. And even made sure that we had everything that we needed, which was great and very much appreciated.

Emily had her counts checked Friday morning, which was before her last bit of cisplatin (last day of chemo) was given and her hemoglobin was 7.6 which is relatively low, Platelets were good and WBC was 2.7.   Emily slept most of the day Friday, so as the day went on, I started thinking she needs to get blood before we go home, or it is going to be horribly low on Monday. I asked Doug what he thought and he agreed, so we got the doctor to agree also.  It just made sense, so that we were not worried about this over the weekend and not driving to the ER and sitting in ER forever.  

Emily did get sick a couple of times yesterday at the hospital and also on the way home.  After getting home, changing the sheets, getting the fluids started, everyone eating dinner at almost 11PM at night, we got everyone to bed.  Emily still hasn't had any energy, daddy took a picture of her last night (right before time to go home) and she looked great, but wasn't feeling great.  She has also gotten sick a couple of times today and basically just laid around.  I hate to see her just laying around because that is not Emily.  It tares me up and I can't stand what this chemo is doing to her.  

This morning, I was going to get up earlier and head to Trader Joes and Whole Foods, but going to bed at 2AM, Daddy and I spending some time together just talking,  to get groceries it didn't happen.  I did wake up...but laid in the bed, I looked at Brianna, I looked at Emily, got up and checked on Jessie and then went back and laid down and looked at the Brianna and then Emily again and asked myself, "WHY?"  I just wanted to know why?  Some pictures popped up on my facebook of Emily when she had hair and everything seemed normal and I had just stared at them yesterday, wishing there was a way to go back.  I kept thinking to myself, there must have been something that Doug and I did to cause this and wondering what it is/was...do we need to worry about our other kids?  We have asked this question to the doctors and they also start with well statistics/rates show...yea well we know about those.

Today is my stepdaughter, Elyssa's 10th birthday.  Lots of birthdays this month...my half brother has a birthday and then Emily's birthday is May 30th.  We really want to make this a very special day for her.  Our hopes is that she is home and not at the hospital or even have to be close to one.  We are working on an auction to get funds together for a swingset and our hopes is to have a nice wooden playset up by May 30th that all the girls can enjoy and something for Emily to really enjoy. 

Monday we head back for counts check and to see where she is.  Initially she did really well with this round, and we didn't stay as long as we thought in the hospital which was great, but she really isn't up to anything or feeling good.  I must apologize, but we are going to be rather anal about germs and everything else.  But 9 days in the hospital is for the birds, and if we can stop that from happening, it would be nice.

Tomorrow is Mother's Day.  I am just happy we are all home and to be home with my girls and the hubby.  Enjoy your day mommies and remember just hold your babies tight and kiss them as many time as you can.  :)

Please make sure you all leave lots of love, thoughts and care for Ronan and his parents, because they really need it right now.

Good Night.

Thursday, May 5, 2011

Emily on the Monday night after realizing she has to be here!

So I thought I was going to update last night the last few nights, but just didn't.

Monday evening Emily should have started her 5th round of chemo, wow....5th.  Scary that I am talking about what toxic chemicals my daughter should be receiving.   However she wasn't able to start because her urine specific gravity hadn't quite made it to its levels to start.  So, overnight she just received fluids to get her specific gravity to where it needed to be.  

Monday afternoon, I was able to meet Lisa from Connor's Heroes.  Emily was passed out asleep when she got here from the benedryl. She is such an amazing woman and I appreciate all that you do for the families in Richmond.  Emily really enjoyed the gifts that you left for her. Again such a pleasure to meet you!  She also has this program called Sidekicks (or you might know it as Big Brothers, Big Sisters) that we can sign the girls up for.  I would definitly like to get someone for Emily, because I think it would really help and maybe someone for Jessie.  

Once Emily woke up, she was in a much better mood (see picture on http://www.emilyhubbel.com) and she said to daddy and I, I flipped out earlier, huh? 

Well Tuesday morning, Emily's urine specific gravity was finally where it needed to be and she was ready to start chemo.  ACK!

Today was the 3rd day of Round 5...  This round was just like Round 3 and honestly so far, it hasn't been as bad as it was during Round 3.  Emily has been handling it well, which we are very happy about and still eating. Something different we tried this time as well is some aromatherapy (ginger mint, peppermint lotions, and ginger oils) and they really seem to be helping.  Earlier tonight was the first time she didn't really eat much for dinner because she complained that her stomach hurt. We were outside on the playdeck for dinner and she pushed her plate away and said I am not going to throw up Mommy!  I knew then that her stomach hurt, and I asked her, and she said it did.  Daddy asked her if she wanted to go back to the room and and she was ready to go back.  Thankfully Emily didn't get sick and again has been doing as well as to be expected.  However we can tell that the chemo is starting to affect her because her skin color is changing and her demeanor is changing (meaning very aggitated again) and really tired.

Doug has been doing a lot of running this week and taking care of us.  He has been amazing though taking care of food for us, while all the while doing all the other normal things that has to be done during the day, thank goodness we have a sitter to keep the girls.  When dad brings the girls up at night, he brings dinner and at least two of these nights we have been able to go outside on the playdeck and eat dinner as a family, which has been awesome and really nice to have dinner all together. Gotta tell you, Doug has been doing a great job with dinner, I told him that he can take on those duties at home.  :)  Doug is such a great man and really cares about his family and being with us, so I treasure all the lovely things that he does for us, it really means a lot.

Thanks for the visitors while we have been here this time.  I really appreciate, Kira (my Richmond Mommy friend), Jessica and my mom and of course daddy and the girls for visiting.  Emily enjoys the visits.  Sometimes she is up for it and then other times she is not.

Doug and I talked for a very long time the other night over the phone just about our situation, family, friends or the lack there of and life in general.  First Doug is an amazing man, father, husband and just in general wonderful for all that he does. He also told me how he felt about me and how he loves what I do for our family and of taking care of Emily.  But it is hard for both of us, we cry, we are sad, we smile, we laugh, but all the while there is a lot of worry for both of us behind the scenes that we share with each other, but we are dealing with the cards that are dealt to us and never ask for sympathy, but just consideration.  This is hard, and for all those parents who have children with cancer knows exactly what I am talking about.  Its a journey that you never want someone to deal with and when its you own journey to deal with, you just learn to make things work and learn to make everything work out.  We have met many parents along the journey and along the way try to meet more parents to get better understanding about this life we now have. From one cancer parent to another, this journey stinks or for better terms IT SUCKS. I read Rockstar Ronan's Journey, who also has neuroblastoma, and this is scary as hell. Within the past week, two other families lost their child to neuroblastoma and we have been reading along with their journey and sharing along their journey), but this whole things just SUCKS and all I can say is I HATE IT.  There are so many decisions that are made, there is a lot of crying, there is ups and downs, there is worrying, there is a lot of time away from family, lots of hospital stays and just honestly lots of lots of things.   This journey has been especially hard on both of us, and then hard on our kids.  We take each other, and learn to live on a day to day basis and all the extra added things, it is really hard to deal with, but we do it.  This has been hard because we lean on each other a lot and we are both learning to deal with this life and each day we just try to take it in stride. I do have other mom's, whom I've never met that I talk to who also has gone through or is going through this neuroblastoma journey with their child, Stephanie (sonKaden) and Rachel (son Ethan), whom we text or email.  And they are both great with anytime of the day or night, you guys are amazing, so thank you for being there. I just want you to know that it is great having you!.  And then my local momma, Sarah, whose son, Wilson just finished his treatment!  I know, this is hard and we all have life's problems, but you know I look at it like this, put your big girl/boy panties/underwear on and deal with it.  I can tell you when this is said and done, Doug and I will be there for others and definitly help with this journey, we will be there for them 24/7 because this is a journey that you need a support system and without that support system, it makes life hard.!  Our families both try to help as much as they can, but its hard for them too, to see Emily going through this, seeing us go through this and then also having their own life to deal with, but we still thank you all for all that you do for us, but Doug and I have found ourselves mainly going through this journey with Emily, ourselves along with the girls. Its hard and honestly, it sucks !  Along this journey there are so many things that you realize, life is too short to complain about the littlest things, because as cancer parents....you know what I am talking about, you also realize life is too short to talk about one another, instead realize that why can't everyone be friends, whether it be from one parent to another parent, from one mom to another mom, from one dad to another dad, but life isn't like that.  It just sucks.  what I really can't stand is someone being nice to you when it is just you, but when they are around other people they act like they don't even know who you are.  Really. We are the same people that you just talked to.  REALLY?   Anyway.  I HATE CANCER, I hate that our family was chosen, but as I said before...we will deal with it and we will learn to make it through...with the ups and downs and Doug and I holding each others hands along the way.  We dont want to be away from each other, we spend enough time away from each other with the hospital visits as it is, so when we are home, it is important to spend all the time we have together as a family!  This journey is about Emily and making sure we do whatever we have to do for her and keeping the rest of the family together and happy as much as we can.    Sorry again for another venting session, just needed to vent.

We also learned that CHOP never received the CT Scan that was supposed to be sent 2 weeks ago, so we had to get a copy of that and Doug had to overnight it to CHOP.  However, CHOP wants us to get another CT scan prior to us heading there.  Dr. Gowda has told them she should be ready in about 2 weeks for her surgery.  Doug and I are pretty nervous about it, but we know with Dr. Mattei she is in great hands.   They want us to come out a few days prior to the day of surgery so that we can have a meeting for a pre-op to discuss the surgery and also meet and talk about Stem Cell Transplant.  (Any CHOP parents reading this, please feel free to comment here and let us know anything you know about CHOP and Stem Cell Transplant).  Some of the things that we are worried about with having the Stem Cell Transplant here at VCU is that they don't have pediatric nurses that directly deal with pediatric patients 24/7 like the 7th floor does.  They have only 3 nurses that work with pediatric, however if they are not there, you are left to deal with the other nurses.  This worries us because of many of the steps that need to be taken for the Stem Cell.  We have a meeting scheduled with Dr. Goddar (who handles all of the stem cell transplant here at VCU) Thursday, May 12 to talk about the stem cell transplant and also have Emily's counts checked.  VCU is one of the only hospitals that doesn't have a Free Standing Children's Hospital.   But we wonder if the Stem Cell Transplant is different with hospitals that actually have a Childrens Hospitals and if they are dealing with only pediatric nurses.  Honestly that is really important when it comes to dealing with a child, because they need to be handled so much differently and with care. As for VCU, a lot of that bothers Doug and I because the hospital is not very child friendly.  Child Life could really be around a lot more, but they are not, we don't hear from them or do they even come around.  (you hear from them, when you tell them to come by) and then you feel as if you bothered them.  Anyway, just another vent session.  I don't mean to make these post about venting, but sometimes just getting out those things that Doug and I feel, it feels a little better about just getting them out there and in the open.

Overall Emily is doing better than we expected with this round. Which is awesome.  As of right now, we are expected to go home tomorrow evening (with tomorrow being the last day of Round 5's chemo) and go home with fluids for the next three nights and we have Periactin should we need to use it.  That is the plan.

We did talk with Dr. Gowda today for probably about an hour and had questions upon questions, upon questions.  What we thought of her having all scans after round 5 (it was more of an misunderstanding on our part), but only a CT scan and then all scans after Round 6 to see where she stands and if she is ready for Stem Cell Transplants.    

Please send lots of love and thoughts that Friday (last day of chemo during Round 5) that she continues to handle it just as well as she has and that she will be going home tomorrow night.

Thank you all for all that you do and all of you that support us, it really means a lot to us as we go along this journey.  Thank you again! 

Emily loving on her bear that she got from Lisa at Connor's Heroes

Monday, May 2, 2011 admission

Today has been a very "F That!" kind of a day, so please don't mind as I vent because I very much need to release!  And if you mind, then....

As with each round, things get harder and harder for us, the girls and mostly Emily! I can't remember who told us at the beginning that with each hospital stay that it will get easier for her! Well they were wrong and it gets harder on us! Each time we dread what is to come and what we have to encounter!  Emily wasn't ready for a stay for this round of chemo and honestly we were not either! Yesterday Emily was so loving!  The week before Jessie was at her dads and she cried and screamed saying she wanted her back! So she was so happy she was home yesterday and was so loving with Jessie and Brianna and even moreso with us yesterday! 

Today at the clinic which we were there forever which is absolutely ridiculous!  Heard from several others that it could be so much more organized there, it is horrible!  So much time is spent sitting there waiting and waiting!  When they said they were working on a room, Emily lost it!!! Ever see your child have a temper tantrum? This was worse and much like what I encounter during her fever stay not too long ago! Doug had a hard time seeing Emily fall to the ground screaming, crying, kicking, hitting and pleading just to take her home! We tried to reason with her and talk with her but nothing was working!  Doug broke down and hell I was well on my way!  Nothing was working!  Doug was at that point where he just wanted to say,"f it, we are taking her home!" and I was too! What made it worse is there was no one there to try to talk with her or anything!  She screamed so loud you could hear her! It was horrible to see her that way, and all she wanted was home!  So mom and dad after daddy saying we should just give her something to calm her down, so we can get her to the 7th floor!  We ended up having to give her benadryl!  But sometimes I think people need to think about what they are saying before they say it!  "awe I wish we could let her go home!" seriously why do you have go say home! Doug and I saucer need go come up with a code name for "home"!  So we take her to the truck to let her fall asleep and pick up her stuff! Both of us break down!  It's all the why's and all the can we take this away from her and the hurt! It's painful to watch, to partake in it, and live it!  Its painful all around! 

Emily just started her fluids no more than an hour ago and chemo will start once she meets levels!  She actually just woke from the benadryl and she wants go play with play doh!  Send lots of love for Emily as she endures this next round

Love Shannon

Monday, May 2, 2011

Again another post that I have been trying to write for about 4 days now, and I write and lose my way or I get into something else.

Emily got to meet Cindy Bear whom came right to our site on a Golf Cart

Friday afternoon Emily and dad and I had an interview with the Make A Wish Foundation.  I think this is a wonderful foundation, but it really seems weird to think that Emily is going to be granted a wish.  However at the same moment I think it is fantastic that they grant wishes for the "Wish Child" and their family.  Just as the interviewers indicate, it is not only the child going through, but so is the rest of the family!  After the interview, we figured since Emily starts chemo on Monday, we left to head out of town for the weekend to head to Yogi Bear Campground.  This Yogi Bear Campground was great and the area was nice.  They even had Cindy Bear take a ride on the back of a Golf Cart and come by and meet Emily at our site.  How awesome is that, right?  We enjoyed the time camping together with each other and just having a good time.  While we didn't do much, it was still nice to be together and it was so nice to see Emily smile, be happy and eat.  It really was.  She was having a good time.  Dad and I even got to have some time where we sat out by the fire after the girls were in bed and have some time to talk, which was nice as well.

Tomorrow, Monday we head back in for Round 5 of chemo.  This round includes the cisplatin that we had such a hard time with during Round 3, so we expect the same of which she went through before, but this time even more since it is an accumulative affect.  Once this round is over and her counts head back up, Emily will be heading to CHOP for her surgery.  I am trying to work with CHOP on that now because we will need to head out a few days before the actual day of the surgery for pre-op and to see where Emily will be after the surgery during recovery.  Our hope is that the surgery be scheduled toward the end of the week, so that during recovery family can come and visit if they would like.  At least that is what we are hoping. We are very nervous about the upcoming events and what Emily will have to endure.  i think the hardest part is to finally see her back to herself (this round took a long time for that to happen) to only have to undergo another round of chemo and watch it happen all over again!

Nick Franca lost his battle and I can't tell you, how devasting it is to know that he lost his battle.  What makes it hard is to know that they can lose their battle not just from the cancer itself, but from the what happens in between.  We worry about this.  Germs are a huge thing to worry about, and all that other that comes along with this.  Another NB family son, Ronan, his parents were told that there was nothing else that they could do for his son.  I feel much of what his mom writes, and while we are not even remotely in the same situation where she is with Ro and where we are, I can totally respect what she is feeling and have felt the same way at one point or another myself.

Cancer is not a joke and I never want someone else to endure all that a cancer family deals with.  Its scary, not just the chemo, but like I said above, because what can happen in between. It puts a lot on a family and all we want to do is make sure that Emily is happy and not in pain.  I feel like we are doing that and more.  We try and I think she deserves that. 

Please send lots of love and support that Round 5 is much easier than it was during Round 3.  During Round 3 what was supposed to be a 4 day stay at the hospital, turned into an 8 day last time.  Our hope is that it doesn't happen this time.   Please send lots of love and support that Emily just sails through this round while Mom and Dad are there to support her.

Thank you again for all of your love and support that many of you leave, they mean a lot to us and I can't tell you how much they mean to us.

Good Night all!

Emily being cute in one of the hats at Yogi Bear.

THURSDAY, APRIL 28, 2011

THURSDAY, APRIL 28, 2011 6:48 PM, CDT

Please go to Nick Franca's page and leave him and his family lots of prayers because the doctors have given them news no one wants to hear! 

http://www.caringbridge.org/visit/francafamily

My heart is heavy from the news and I'm hurting! This bothers me so much about neuroblastoma and the side effects!

Lots of prayers for the Franca Family

Sent from CaringBridge iPhone app

WEDNESDAY, APRIL 27, 2011

WEDNESDAY, APRIL 27, 2011 11:50 PM, EDT

I hope everyone had a great Easter and got to spend time with their family!  This is exactly what we did.  We woke up and the girls enjoyed going through their baskets and playing with things. This was the first Easter with no candy and it was actually not so hard at all.  Dad and I got to head out Friday night to get the girls Easter stuff, so it was nice to get that done.

Monday Emily had clinic to check her counts and to talk with the doctor about her weight loss that dad and I were worried about. Emily's counts were up so we were able to stop giving her the GCSF at home via her lines, which is great. Emily did lose a few more pounds which was concerning to dad and I. So total she has lost almost 5 pounds.  Doug and I went ahead and placed her back on the appetite stimulant to stimulate her to be hungry.  Before it seemed to work so quickly, even though they said it would be 48 to 72 hours, well I think the 72 is more accurate.  It took her a while to get her self back to being Emily because Friday and Saturday and some of Sunday she was still very tired and groggy and very whiney, however Sunday afternoon and definitly Monday she really started to come around.  The doctors have Emily starting her next round of chemo on Monday, so Emily has some time at home to try to gain some of the weight she lost.  I doubt that we will be able to get that back before we head back, but at least we can try to see if she can get a pound or so back.  

Overall, we are all happy to be home together and enjoy the Easter Holiday together and spending time with family!  We have enjoyed the family time, something that is hard to enjoy while at the hospital.

Hope everyone is doing well, Mommy is exhausted tonight and is having a hard time keeping her eyes open tonight.  Make sure you hug and love your kiddoes and hold them tight.

I will try to update more tomorrow night, I'm just exhausted tonight to no end.  

Good Night!!!