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

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Monday, February 28, 2011

Monday, February 28, 2011

It was a long 28 hours or so at the hospital over the weekend and frustrating to see Emily have to go through the pain that she went through just to get the stem cell harvest.  I know that all this is in good for her to get better, but it is hard to see your child go through more pain that you ever have in your entire life. 

Friday because we were not prepared for staying at the hospital overnight (meaning no food, no clothes, no nothing)! Emily was crying in the fishbowl (the main room where they have the common room to check counts) and other patients are in there about wanting to go home.  Our nurse moved us to a private room.  I asked Dr. Gowda if we could go home at least to pick up our clothes, and her food and then come back.  I cried to Dr. Gowda about having to go through all this and Dr. Gowda even cried with me. He understood that no one there understands what parents go through because they themselves have never gone through this, and I can tell you it is very frustrating as a parent and then Dad and I have other kids at home that need care too!

So we headed home to pick up our stuff and then headed back to the PICU.  We have never been in the PICU and this is a place for children who really need to have more attention and more aid.  They placed Emily in the end room, which was great because she said they were only two rooms of 14 that have bathrooms.  Which was thankful, because Emily uses the bathroom, and not a diaper.  As soon as we got there, they were ready and waiting.  She had the line placed in her leg and she did well and this time she didn't get sick from the anesthesia, which I was very thankful for.  When she woke up, the nurse came back to get me in the waiting room and when I got back she was awake and she was starving since she didn't get to eat anything all day and all she wanted to do was to eat.  So, she ate some food that I had brought.   She cried that the leg hurt and that all she wanted to do was to go home.   She did get up to go to the bathroom and she said it hurt to walk on her leg, so she was on her tiptoes.  Dad and I are not into using a lot of medicine and most definitly the stronger ones, so we just used Tylenol just because we didn't want anything stronger, unless she really needed it.  And she did well with the Tylenol.  The link was pretty much like another hickman just shorter lines and there wasn't a bridge behind the line so that it wouldn't come out, which was one of the reasons for not being able to go home with it.  Dad came by to visit and Jessica stayed with Jessie and Brianna at home since Brianna was sick and she really didn't need to be around the hospital. Thanks Jessica for last minute.  Dad brought Emily some fruit (organic still and it is going very well, and even Dad and I are losing weight.) and other food so that Emily could eat.  And he was going to get up early Saturday morning to make steak and eggs for us.  Yes Emily loves steak, which was quite interesting to us.  No hormone and antibiotics into the meats, are so good and taste so much better, and even the kids love the meats more now.

Emily did well over night with it, and all the extra stuff that PICU does that we were not used to.  Saturday morning Emily and I woke up at 4 AM when the nurse came in to take her labs to get her counts since Friday night she had to get another dose of double dose of GCSF and then a triple dose about 730AM, so they wanted to see where she was before getting the triple dose.   So I let her eat a cereal bar because she was hungry.  The nurses said she should not have eaten in case she needed anesthesia for the harvesting, since it would take about 3 to 4 hours.  I explained she would not need it, since I would be laying in the bed with her, and that she would be fine.  They were adament that she would need it and I was adament that she would not.  Her counts came back and her WBC was up to 18.6 and she was ready for harvesting.  I was nervous that they would not get the 10 million that they need (enough to do two stem cell harvests) and she would have to stay another night.  She stilled cried overnight and even in the morning!  She would get a bit antsy and I would explain that if she didn't calm down, they would have to give her medicine and that would mean she couldn't eat when dad got there.   

Harvesting Machine
The only part she had a hard time with is them placing the lines from the machine to her line that they put in the night before because she said it hurt.  But once it got connected she was fine.   She did great during the process, she had one moment of her stomach hurting and she said her stomach hurt, so they upped her fluids ( her blood pressure was a little low as well) and then she was fine, she said she felt better.  The lady from BMT said she should have eaten a full breakfast, I explained to her they wouldn't let her because they thought she would need the anesthesia.  1230 PM, they were done and they took the stem cells to be counted and then frozen.

We got notification about 3PM that they had gotten the amount that they needed, but that her Platelets were low.  So she needed to have a platelet transfusion before they could remove the line because without the platelets it would bleed more than usual.  So she got the transfusion, got up for the bathroom and they removed it.  The worst part of removing it was the dressing that was on it.   

I was getting her dressed for home, because she was ready and noticed her dressing needed to be changed because it was having air get into it, so she had to have another one.  She did well with it again, only once cried. 

Dad went home and got the girls with Jessica to come back to pick us up.  But 530 PM she was ready to be back home.  Yeah. Dr. Gowda said since her counts were high to take advantage and let her get out some.  So we went home to take one of the cars home and then headed out to Whole Foods to get groceries and to eat there. 

More update later.  We need to get ready for a day of scans at the hospital.  

Friday, February 25, 2011

Friday, February 25, 2011 Part 2

Well we are back in the hospital! Emily was admitted today because her counts were so high and her CD34 was up she is ready for stem cell harvesting but what sucks is that they had to put another line in her leg where the main artery is like her other line except this one will not stay in!

This is really frustrating because we were looking forward to a relaxing weekend with the girls! And on top of that we have had enough after one week! 

Today I had to walk out the room for them to put in the line and I just cried because it really bothered me putting her under again and her having to have another "ouchie" and she is crying it hurts!

So what we want to know is can someone tell us that the nightmare is over because we are done! We just can't take anymore! Its been a trying week!
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Friday, February 25, 2011 Part 1

Well its been a while, and I know I haven't updated.  I'm sorry but honestly it has been a very crazy week to say the least.  

Monday the results came back the Emily was RSV positive. The only place that she could have gotten it would have been from either the clinic or the hospital because other than that she hasn't been around anyone that has RSV so its really bothersome that she got that.  I knew Friday when we went in to have counts checked that she was sick, but they couldn't do anything until she had a fever.   GAH.  Since RSV is highly contagious and everyone on the 7th floor pretty much had it, nurses, doctors and child life people or volunteers had to come in with gowns and gloves on. 

Emily also had to have a lot of blood checked while we were there to get a baseline for the stem cell harvest and to check for anything that was in her blood so they had a baseline.  

We were at the hospital until Wednesday afternoon.  Everything went well, had a few frustrations with nurses but we were able to get that straight thanks to talking to one of the other nurses.  Emily also had a rough time staying there because all she wanted to do was go home and get some rest that was all she wanted.  She didn't want to be there. I can't blame her, because her whole life has been uprooted as well as everyones in the family!

Tuesday she didn't run a fever all day, but they had her stay to give her the antibiotics and then for the next day when she needed to do the bone marrow aspiration.  Her counts were still .1 and her hemoglobin was 6.8 so she had to have another transfusion this go round.  I don't like these things at all.  I wish she didn't have to have them at all.

I won't go into crazy detail but the next day was a busy and rough day for us all.  Emily had to have her bone marrow aspiration and they allowed me to come into the room.  I for reasons of WOW won't explain about it, but I will say it was probably something that I should have never stayed in the room for because it was just horrible.  I couldn't believe that she had to endure that horrible pain and all she really got was a little bit of medicine for pain and anastasia.  I cried watching it and wish seriously I had never stayed in there.  Afterwards they gave her some tylenol and then the nurse said her Vitamin K levels were off.  So, I talked to Dr. Godder and she explained that Vitamin K helps with your blood clotting and if the levels are off it can cause more bleeding.  They noticed during the Bone marrow that she had a little more bleeding than she should have had.  So they had to run an IV for Vitamin K, and she was ready and waiting for Pop to come and pick us up.  She was sitting in the stroller waiting and she started to cough (so I thought) but it was dry heaving.  She was complaining her stomach was hurting.  So, she got out of the stroller and hugged the toilet.  I felt so bad, she was in such pain on her back and was very sore and then she was getting sick!  She did finally throw up, and all she wanted to do was to go to sleep.  So, pop go there when she was going through that and then she laid down and took a little nap and then we gave her some zofran after the Vitamin K.  But after that she was ready.

From the anastesia she got sick and her face was swollen.   Get home Wednesday and Brianna was getting sick.   So we were trying to keep the girls separated from getting sick.  Jessie also came home Wednesday night, so it was so nice that we were all home together with each other and it was great to be with everyone.  We left Wednesday with her white blood counts at .3. 

Yesterday was Doug and mine's 4 year anniversary.  We didn't really have any plans to do anything, but Doug got out of work earlier yesterday than normal, and the night before Brianna kept me up until 4 AM crying.  She wasn't feeling good.  When Doug got home yesterday he took her temp and she had a temp.  So Doug took her to the doctor and she had a ear infection and same thing that Emily has.  WHAT A PAIN IN THE BUTT.  EEK.  So, now we are trying really hard to keep the two away from each other so that they don't get sick.  We are also keeping up the GCSF with Emily everyday at home to get her white blood counts back up so that she can have the stem cell harvest done.  We did find out while in the hospital that her line wasn't strong enough to do the stem cell harvest, so she will have to have a line put in to get it done. 

Its nice to be home, but prior to the next chemo round starting Emily has a lot of scans and harvesting that needs to be done.  So next week is full of CT scans, MIBG and whole body scan, so we are a little stressed about the upcoming scans, but we are praying that we see a big difference.

I am writing this update here today, because we are at the clinic to have her counts checked.  And oddly enough her counts for her white blood count came back as 11.5.  OMG.  That is higher than when we started out all of this, but they said it is normal with the GCFS.   We are still waiting for the CD34 to come to see if she ready for the stem cell harvest.  

Please continue to pray for Emily and all the other families who are going through this horrible mess.  This has been a really stressful week and time and just a little much going on for us.  We are just trying to take one day at a time and just make it through, but wow.  This has been a trying time.

Thanks again for all of your wonderful messages, because they really mean a lot to us and we love to read them.  We are going to hold off on the party at Diva's And Dudes because of Emily being sick and also Brianna, plus we are hoping to have a nice quiet weekend of rest and relaxation.  


Monday, February 21, 2011

Monday, February 21, 2011

So yesterday the fever was persistent and continued all day!  It was so weird to see Emily only be in and out of sleep.  She did eat yesterday, not much, but she did eat and she drink a lot of fluids, so I was happy to see that.  She held onto me most of the day.   She was complaining her throat her, so I did ask them to do a strep test and they were adament to wait until today, however I felt it wasn't necessary to wait until today because waiting wasn't going to do anything, so I requested that they do it yesterday.  We should be hearing today if she has RSV or Flu and we should be getting something back on the 24 hour cultures and know what the stat on those are.  

They checked her fever about half an hour ago and it was 102.1 so the temperature is still up.  However overnight, she didn't have anything.  So, she is fighting something.  She also stated that they are going to have to do cultures again since her temperature is still up. 

Dad is going to come and stay with Emily today and I am going to go to work.  It is going to be hard to do this, because I am going to worry all day, but he has the day off so it seems like the right thing to do!   However if anything is going to happen, he will let me know and I will head right over.

We are still waiting for the overnight counts they did at 4AM to come back this morning.  They checked them yesterday at the ER and they were 0.1 for her WBC, so she is still getting the GCSF at the lower dose.  They will not double the dosage until they see that her counts are going up.  We are also waiting on her cultures to come back. at 704AM, her WBC results are still .1.  So we are still trying to get those to come up. I hate seeing her like this.  I really do!

I will update later, as soon as dad gets here, I will be heading to work.

Sunday, February 20, 2011

Sunday, February 20, 2011

Emily on Saturday posing with her headband with the letter "E" on the flower. 

Saturday was a great day, Emily was having a blast, playing and having a good day.  We just hung low.  I did go out for groceries at Whole Foods, but I went alone since Emily can't go anywhere. We had dinner and things seem to be going well! About 1030 the girls were tired, so I laid down with them and stayed awake until 1130, Doug ran to Wal-Mart because Emily was going through tissues like crazy.  She still has the cough, runny nose. I fell asleep after 1130 and at 1230 Doug woke me up and said we had a problem.  I was still in a daze, but I was like...Emily has a temp of 104.1.  Wow, come on... so she got up and had something to drink and we tried to see if her temp would go down on its own.  Before we left for the hospital it was 102.

So, yes it was off to the ER at 2AM in the morning after talking to the on call doctor and she telling us to head on. Anyways once we got to the hospital her temp was 99.2 and the doctor there was feeling pretty comfortable that Emily would be able to go home after they did her counts and checked her temp again, however....that was not the case.  It was the longest night in the ER ever.  Seriously.  By 6AM, he was telling us that because her temp was 104 at home, she will need to be admitted, and they would be back in to check her temp.  By 720 AM it was 102. I think the night in ER was so long because about an hour after arriving, they had an emergency come in.  It seriously broke our hearts and we were praying and had our fingers crossed for this little girl.  I know later they said it still wasn't looking good, but she is only 2 months old and there was police, doctors and nurses everywhere.  We don't really know what was going on, but we were definitly saying some prayers for her.
So yes, Emily is back in the hospital.  Everyone was asleep this morning when they told me that and I just cried for Emily and for us.  You know after chemo, you come home and get back to normal life and enjoying having the family together and then all the sudden, this crappy temperature changes everything. Jessie was supposed to come home from her dad's today, and all of us would be home together.  So, although I guess I knew that this would be a possibility, I was just hoping and praying she wouldn't get it again especially with doing the GCSF everyday.  I can't tell you how much this (excuse me) sucked to hear. On top of that, we weren't prepared at all, meaning food wise. So that just makes things a bit harder on the situation and a bit more work on Doug.

Now Emily on the other hand is totally not taking this well at all. She does not want to be here, she has cried off and on and not just a cry, but a cry that breaks your  heart and you just want to cry right there with her.  I can't tell you guys how hard this is on her, on mom and dad (us) and her sisters.  It does disrupt everything and while we will do whatever we have to do for her, it still makes life hard. 

I didn't sleep in the ER last night, couldn't in the chair and Brianna wasn't about going to sleep, until about 530AM.   So I was exhausted.  We got to the room, Doug went to get our stuff out of the truck and Emily wanted a tubby. While she was getting a tubby, they did a RSV and Flu test, but later told me it takes 24 hours to come back.  That is crazy. Doug and Brianna went home to get food.  Thanks honey. Then Emily and I laid down for a nap, I was woken up by the doctor, but Emily is still sleeping!

Needless to say its been a long night and day!  Say prayers for Emily that she will be fever free for 24 hours and so she can go home. As always hold your kids tightly and love them with all you have!

Friday, February 18, 2011

Friday, February 18, 2011 Part 2

Emily all ready for her clinic appointment

Today's appointment went well!  Emily had to get her counts check and they went from Tuesday 2.5 to 1.2.  Our hope is that she doesn't hit rock bottom, we are trying the Life Mel Honey which is chemo support and Emily likes the taste of it.  We hope to see her counts not go rock bottom, but we just started it yesterday.  The doctor was surprised to see that she didn't have any mouth sores yet, so good job honey on the traumeel s, we are going to see if she hits rock bottom and if she does how her mouth does and if she restains the sores.  Our hope is that she restains them.

However Emily seems that she is starting to get sick.  She has a runny nose, she sounded hoarse this morning and coughing and sneezing, but the doctors said we needed to wait its course since she didn't have a fever.  So, lets pray it is nothing. Hope iti s just the drastic change in the weather, 75 degrees today!

Again we are trying to get her counts up so that she can get the Stem Cell Harvest done, so we are still doing the GCSF daily and then on Monday they will double the dosage!   We were told once they double the dosage we should start to see them increase quickly!  So Monday morning we will go and have her counts checked again and see where she is.

Wednesday she has her bone marrow test scheduled.  So she will need to have anastesia (sp) for that.

So we just ask that you guys say lots of prayers for us as we go into the next week or so!

We are hanging low this weekend since we are told to stay home and not have her around a lot of people.  So, have a good weekend.

Hold your kids tight and love them with all you have. 

Friday, February 18, 2011

Nanny, Brianna, Justin Bieber, Mommy and Emily
Good morning!  I guess it has been since Monday since I posted and I have to say I'm sorry!  Its been a long week and just trying to stay awake at night to post is hard.  Its funny, maybe not, at home, I can go right to sleep, but at the hospital, I can't sleep.  I think a lot of it has to do with just making sure that Emily is ok and checking on the nurses who are coming in and out during the night.

Monday Emily had a great day! Daddy brought two special boxes from the house that were left there, one from Aunt Lynn and Brittany and then another from Tiara's and Trucks.  Emily had a blast opening the boxes and seeing what was in them.   There was one thing in the box from Aunt Lynn and Brittany that Emily just had a blast with was the life size Justin Bieber. As you can see we took a picture. She got a beautiful purse that had her name on it with a crayon roll set that Emily loved too!

The doctor came in and told us that Emily had an innocent heart murmur.  She had never had one before.  He explained that it wasn't a bad that and that a lot of children get them when they are on chemo.  However, that was the first time I had ever heard of that.  It was and still is a bit concerning to me.  However during this whole week of chemo, even the day she started last Friday and was getting hydrated and she had a low blood pressure.  Which was abnormal for Emily and was a bit concerning to both Doug and I.  However when checking her blood pressure, it was low, her heart rate was still normal and wasn't working harder, so they were not as concerned.  So when the doctor said she had a bit of a heart murmur and it had to do with the hemoglobin, the nurse said it all made since now why her blood pressure was normal.  We were told that it would go away after chemo is done, I hope that is the case.

Nanny came to stay the night at the hospital with Emily on Monday night just to enjoy some time with her.  And Emily enjoyed that.  Nanny was able to give her a bath and play with Emily.  I don't think Nanny was used to staying up late at night. Emily also tends to stay up later when we are at the hospital also.

Tuesday was a day that Emily knew she got to go home, but it was after her chemo and after she had a little bit more of hydration.  her last chemo was done about 330.  But she had to have hydration and a dressing change before we heading home. She still hates these more anyone can imagine.  You can't even talk about it or she will start screaming and crying.  I can only imagine, she is only 3 and having to go through so much for a 3 year old and honestly it isn't fair that she has to endure this much.  Seriously.  Anyway, Emily was rather tired on Tuesday and pretty much just played with nanny and then rest of the day she just laid around wanting to go home.  It wasn't coming fast enough.  On top of that mommy left her light on in her car on Saturday in the parking deck and drained the battery, so we had to wait for Doug to come and help us.  He got there the same time we were walking down to put the stuff in the car around 630 and thought once the car was starting we would be good to go home.  However with the way the parking is, Doug couldn't get his truck by my car and we had to go and get a cordless one.  Well it was dead and needed to be charged to charge my battery.  It was just one thing after another.  We get it started get out of the deck and she died again!  This time it was harder to get started again and the car needed to be running for a bit of time to hold the charge.  Finally about 8 or so (time is very distant) we got it running and Doug drove it home.  He was frustrated, sorry honey!.  I felt so bad though Brianna was at the sitters house and the sitter was exhausted and wanted to go to bed, since is normally in bed early and was ready to go bed and we still were not there to get her.  I called my friend, Kira and she went to get her.  Thanks Kira, you are a lifesaver. Finally we got home a little bit after 9PM.  Emily was exhausted and hungry, nobody had eaten and all she wanted to do was eat and go home.

Please say a prayer for our friends, Jerusha and Moses whom their daughter has the same thing as Emily and is undergoing her stem cell transplant.  My heart has been with them and praying for them.  Stop by and leave them some prayers if you have a moment. 
Again sorry the delay in posting, however it has just been busy.  Since we have been home, we have been giving her every 24 hours her GCSF (I think that is right) IV which is supposed to help get her counts back up so that she can get her Stem Cell Harvest done.  Monday her counts were 3.3 and Tuesday they were 2.5.  So a big jump in counts within one day.  We had back today to see where she is with her counts.  I just hope that they don't get as low as they were before, because I hated them being that low.

Girlfriends of Emily's at CCDC we are looking to have the party at Diva's and Dudes on March 5 from 2-4...this is tentative that her counts are up and she is doing well!  If you are interested in bringing your daughter, please email me at Shannonh@couponmommyof3.com so I can give you details.  Emily is very excited and hopes that we can have it next week.

Well, off to wake the princess so we leave at 830 to head downtown to the clinic.  Hope you guys have a great Friday and please continue to say a prayer for Little Emily and all those others. Hold your kids tightly and love them with all your hearts. 

Just another Thank you very much to all of those wonderful people out there who have been such a blessing to us and doing all the wonderful things that you have been doing.  Doug and I can't express in words easily how amazing you all have been.  Thank you again, over and over again!

Monday, February 14, 2011

Monday, February 14, 2011

Auntie April, Emily with her Justin Bieber pjs. Erin
Yesterday Emily had a great day!  She was full of energy and just enjoying life.   It was great to see her so full of energy. Auntie April and Erin came by to spend some time with Emily, which Emily enjoyed playing computer games with them.  Then Jessica and Will stopped by and brought Emily some finger paint and stickers and Emily had a blast finger paiting and Erin cutting out stick figures. Doug brought Brianna over and some great lunch that came right in time when Emily was starving and she ate it right on up.  It was the first time we had tried the organic hamburger and it was yummy!

So, far so good Emily has not experienced any vomitting, and she only seems to have a stomach ache in the morning.  She is doing great though.

She is still crying for home, but mostly at night time, during the day she just makes comments about wanting to be at home and play with her own toys. 

Doug has been doing a lot of running for us to make sure that Emily and I have the food that we need to eat and to make sure we have everything that we need.  Thank you honey, it means a lot to us.

Last night Emily wanted to play air hockey in the room next to us and the nurse even gave Emily about 45 minutes to play off the IV, and Emily was just off the wall, she was running, jumping and going crazy. 

Emily had an accident last night and I woke up in a wet bed. The nurse just happen to come in at the time I woke up and was going to check her counts.  So we should have those back in a few hours. Emily woke up thinking she was sweating again, but did well when I told her what happened.  Thank you to the Nurse for cleaning the bed while I got Emily and I dressed in clean clothes and she could go back to sleep.

Emily has 2 more days of chemo and hopefully she should be home Wednesday sometime.


Doug, Happy Valentine's Day to you, to the one I love and will spend the rest of my life with.  I am so happy to have you and you are such a wonderful husband and father.  I am even happier to be going through life with you!

Doug and I will also be celebrating our 4 year anniversary on the 24th of this month. I LOVE YOU!

Love Shannon 
Happy Valentine's Day to the rest of you! Hold your kids tightly and love them with all your heart.


I just wanted to share some pictures from when Emily cut Daddy's hair and the finished hairdo.  We all love it.  

Emily cutting Daddy's hair.

Daddy's new hairdo

Sunday, February 13, 2011

Sunday, February 13, 2011

Emily is sleeping and Mommy is awake.  I can't sleep tonight. Its been a long few days, Emily is still wanting to be home pretty badly, but she is hanging in there.

Jessica and Emily (Jessica loves Emily so much
We got here Friday afternoon after the nurse called around 10AM to let me know that a room was ready!  My mom came over to the house to come with Emily and I to the hospital. When we got here, we had a really nice room, I have never seen any of the rooms like it before.  It had a beautiful painted picture on the wall and a sofa and it was beautiful.  Anyway.  The day started and Emily had to get her 2 hours of dehydration to make sure she was hydrated enough to start chemo. All those horrible feelings and wishing Emily didn't have to have any of this, and the thoughts of the first round came back.  I am scared because I'm just not sure how this round is going to affect her compared to the first.  Anyway,  IV fluids started about 2PM and everything was looking good her urine specific gravity was good and they checked her blood pressure and it was low around 4 PM.  They tried the other leg and arm, and still had very low readings.  She was sleeping, but it was lower than normal from when she was sleeping before.  So, the doctor recommended that she have more fluids before she started. They checked back quite a few times and she continued to have low blood pressure even once she was up.  They checked again about 8PM and she was ready, so chemo started at 810PM. Jessica came by Friday night to check on Emily and bring her a bunch of Justin Bieber goodies.  She was pretty excited and now the room is decorated in JB and she is wearing his necklace.  I keep saying and her sitter has been trying to reach someone who she can talk to about seeing that Emily can meet Justin Bieber and he sing her a song. Oh how she would love that.

Emily's I <3 JB Necklace from Jessica

Emily's Justin Bieber poster from Jessica.  He kept staring at Emily, Emily said.  It was so cute.
Emily and I were watching TV and the nurse came in, and said "mama we are going to have to move Emily to another room across the hall, because another family needs this room for pallative care!"  I had never heard of pallative care and was also making sure she wouldn't have to share a room. The nurse explained pallative is for a patient who is end of life and Emily wouldn't be sharing a room. Oh wow, was all I could think and it was just really hard to think that the room that we were in was used for children who are at end of life and that is why the room was done up more than any other room to make things more comfortable.

Emily and Uncle Austin.  He loves his Emily and is very protective of her.
This morning Emily's stomach was really bothering her and she wasn't feeling well. She said she couldn't eat because her stomach was upset and that she might throw up.  Emily had quite a few visitors today from both of her sisters, cousin Jessica, Nanny, Pop and Austin, Uncle Ben.  So far, she has done well with Day 2 of Round 2 chemo.  When this part of chemo is done she has to do Stem Cell Harvest and also re-evalution of how the chemo has done with the tumor, the spots on her legs and bone marrow.  I understand that they normally give Nulasta shot after the chemo, however this time they are going to give her GCFS, which she says is a faster release to have her WBC come up whereas the Nulasta is a slower release.  She also explained that if Emily doesn't have a good blood pull on her hickman port that they may have to place an IV in to do the Stem Cell Harvest, because we don't want the hickman line to fail, or then she would have to have a new one put in.  We are positive that this has just got to attack what she had and be gone.  That is what we are hoping for. So, we have quite a bit coming up for us and what makes these even harder is that all Emily wants to do is just be home.  She cries for home and it just is so hard to hear her cry, because the crying has gotten worse than what it used to be.  And just knowing what is ahead is really hard to think.  While I know One day at a time, it is still hard to think of what is coming.

However today has been a little difficult, we are still close to the room where we were before and the room Emily is right beside the teenagers room to hang out and all of the family has been around all day today with the family in that room, of the child that is close to end of life.  I have thought about that family all day, and praying for them, but wow it was so hard to see tears in the hall way, family coming in and out of the room and just the thought.  I seriously can't faithom the thought, and it just sucks. 

We are using the Traumeel S 4 times a day with her swishing it and then swallowing it and she is doing well with that.  We are really hopeful that this helps with the sores that she had before and we hope that she doesn't get them this time around.  

Well I should probably try to get some sleep, not sure how tomorrow will go.

Saturday, February 12, 2011

Saturday, February 12, 2011

Its Saturday morning and its been a while since I updated, so I must apologize, just seems like lots going on and then I fall asleep or something.

Wednesday evening, the girls and I were headed to Kroger since dad was working late, to pick up some organic foods and while on the way there,  I received a call from Tiffany from Diva's and Dudes. First I must say these woman at Diva's and Dude's are just an amazing group of woman.   AMAZING.  I told Tiffany, we would just stop by and talk to her since we were literally on our way that way and she was excited. Emily was excited, she loves Diva's and Dudes. We stopped by and Tiffany told me that Emily really left an impression on them and they wanted to do an event for Emily one day to have a certain amount of the proceeds go to Emily.  I was amazed, but you know Emily has always left something behind to everyone even before all this started! Also they want to give Emily a party at Diva's and Dudes and Emily is excited about this one.  Hopefully in a couple of weeks, her counts are up and she can head over and have her and all her girlfriends be glamoured away!  This is amazing.  So, all of Emily's girlfriends at CCDC if you are interested in being invited, please let me know (email me at Shannonh@couponmommyof3.com) so that I can let you know exactly when it will be.  Emily is super excited about this. :) Doug and I later want to do something when we can have all of her friends from CCDC do something with her, because she loves all of her friends from school.  Diva's and Dudes, you are guys are just an amazing group of people and we just want to say thank you for making our daughter so special. 

Thursday Emily needed to head back to the clinic to have her counts check and make sure she is ready for Round 2.  But before we headed there, I wanted to take her by her school to see her friends.  I wish I would have taken a picture, but I didn't because when we got there there was a sign outside that said, "We Love You Emily!" and everyone was waiting to see her.  We brought her Valentine Day Cards that she did for her friends and came in to see all of her friends.   To all of you mom's and dad's of CCDC's I just want to send a huge Thank you for all of the amazing things that you are doing to benefit Emily.  I can't tell you all how much everything means to us and just puts a huge smile on our face to know that everyone is standing behind our daughter. Thank you!  Thank you!  Emily enjoyed spending a little bit of time with her friends (I thought she wasn't going to want to wear a mask, but she did great and had no problem) and everyone was amazing with her. Thank you!

Since we still had a little bit of time after that, I decided we will stop by mommy's work and see mommy's friends at work and then head to the clinic.  I called to make sure everyone was in and they were, except for my supervisor (but I knew he wouldn't be, but we missed you!).  Emily was shy, but that was normal, but it was nice to see everyone and everyone that is supporting Emily.  So, thank you!  Then we headed to see Miss Marty, (also through my work), and Emilly just loves Miss Marty. Miss Marty was in a conference, but I knew even if I didn't stop by she would be upset.  Miss Marty, I know it made your day to see Emily and it made her day to see you! 

This is Emily at the Clinic waiting for her counts to come back. 

We headed on to the clinic and she cried on the way there.  She didn't want to be there, we tried to prepare her all week that we were going for a couple of days to the hospital,  but it didn't really help much.  We thought it might help.  She cried all the way!  Everything looked good at the clinic, her counts were great, went from  Friday, 2/4 of 1.1 WBC to Thursday, 2/10 up to 3.4.  So, it was great to see her counts up.  However they were still not normal when the 1st day of chemo they were 5.9.  After all of that, they gave her a room and we headed to get our stuff.  I had asked if it was a shared room and she said it was, but that no one was in there.  After we got our stuff and headed up to 7th floor, we found it was a shared room. I was pretty upset, but remained calm.  We saw Lauren, one of our favorite nurses and explained that we didn't want a shared room. Someone else was our nurse and she explained since her counts were fine it was hospital policy that she could share a room. I explained to her, while you say that her counts are fine, they are only fine in Chemo World, because her counts are still low considering normal and that she should not be sharing a room with anyone.  So, they called the other part of the floor and they didn't have any private rooms open. So they had the head nurse come talk to us.  I explained to her, "We had to pull her out of school, because it wasn't safe.  I asked if we sent her to school with no mask, would it be safe to say she wouldn't get sick?" She couldn't garantee that.  I explained to her, we have done a lot of research and research shows that children on chemo or any patient on chemo should not be sharing a room. You don't know the parents and family friends that are visiting the other patient and with her counts still being low she could still be in danger to get sick.  She understood and said the only other thing they could do was to see if there would any any other disharges for Friday and get her a room that way..  She came back and said they had 4 discharges for Central (children 5 and up) and could hold her a private froom for Friday.  So we decided to take that route.  You know, its interesting from reading and doing all the research that they still have patients undergoing chemo sharing rooms.  I understand that this is high time for RSV, Flu and other things, but also with chemo and counts it is dangerous if they get sick and their counts get seriously to low, so I stood up for Emily, since she could not.  While I hope I didn't make anyone upset, but I think I did...I just want my daughter to be safe and this is something that I will make sure the whole way through.  She already gets sick easily, so I don't want to see her get sick because of other people coming in and out of room that we don't know and may be sick.  Thank you for respecting our wishes.

So we headed home and spent time with the family until Friday came to head back to the hospital.

I will write more later, Emily's tummy is upset!  

(don't forget to follow www.emilyhubbel.com because eventually, I will move everything there!) 

Wednesday, February 9, 2011

Wednesday, February 9, 2011

Morning, another early update here.  Its the day before we head back to the hospital for Round 2 of Chemo and I have to say although we are somewhat prepared for what is going to happen, I am still nervous about it.  I am nervous that we may have to share a room and we have gotten really big about germs, so I'm not sure what I will think about that.  I am nervous about the side effects.  i think everything will work out. But I'm just nervous.  Doug has been doing a lot of research so he found some herbal stuff called Traumeel that is supposed to prevent the sores in her mouth.  He picked it up yesterday from Elwoods and we are going to do it 4 times a day.  I hope it works and those sores don't show their ugly head, because they were awful and the doctor said the sores get worse.  ACK. Anyway.  Doug and I are trying quite a few things and I am happy with the things that we are going to try to not only keep her happy, but in hopes to keep her counts up, continue eating and nothing that will hurt her.

I forgot to tell you guys that over the weekend Emily shaved Doug's hair. At first for a couple of days she wasn't about doing it, but after he got the stuff out she was ready to do it.  She told Nanny the next day she shaved daddy's head to look like hers.  It was cute.  For a little bit she stared at Doug and said he looked weird, but I think it is pretty cute!

Looks like they are calling for snow tonight.  We don't get much here and the past few times that we have gotten it, Emily has been in the hospital so she really hasn't been able to enjoy any of it.  

Well I hope you all have a good Wednesday, the next update probably won't be until after we are in the hospital.  We are going to stop by her daycare tomorrow morning and visit her friends and then head on over to the hospital to the clinic.

Love your kiddos and hold them tight. 

(My intention is to keep writing on CaringBridge, but to eventually change over to to her page here that I have made her and my husband and I will both be working on.  So for right now, I will post them in both places, but make sure you are following so that you will be updated when we update the page.)

Tuesday, February 8, 2011

Tuesday, February 08, 2011

Just a quick update before work today, everything has been going great here with Emily. She went Friday for a count check and her counts are going up. Which is awesome news. We left the hopsital Wednesday at .4 and when she went Friday her white blood count was 1.1, so we were pretty happy with that. Her ANC was also .5 so she is ready for the next round of chemo which will start on Thursday. Emily needed that break and it has been nice to all be home together as a family!

We did get the house all to organic food and that has been going really well! We visited Whole Foods over the weekend, what a great experience and we loved the place (or maybe just I did). We did have to make another trip, but this time I went with a list and that really helped. I have been making meals since Sunday to prepare for the hospital so that when Doug comes up tot he hospital he can make them and bring them on. Some of breakfast and lunch, could probably be more like fruits and then veggies with a sandwich or something at lunch. The change to organic really hasn't been that hard, it actually feels good to eat healthy. Doug has been working on research. He has been researching what is good and bad with nueroblastoma and we are going to work with some of the things that he has found!

Since Thursday we head back and have to be there at 10AM, I was thinking if I can get the girls out of the house by 7AM and drop Brianna off at the sitters, I will bring Emily by her daycare for a little bit (since her counts should be completly back by this point but with a mask) to see her friends that she misses. So tonight we are giong to go and get her some Valentine Day Cards to work on during the day tomorrow so that she can bring them to her friends on Thursday morning. we told her and she is pretty excited, but she wants to bring her friends to the house. :)

Everything has been great here with no fevers, everyone is very happy, so I just wanted to give you guys an update.

Again I want to thank all of the wonderful people out there who have just been amazing to us. It really means a lot. Thank you again for all of your wonderful help and love.

Oh for all those in the local area here, I did see that Emily's daycare is doing a Cici's fundraiser for Emily on 2/16 from 5 PM to 8PM, if you would like to head out their and support her. I can also tell you that there is going to be another fundraiser on April the 8th at Home Team grill in Downtown, Richmond from 6PM to 1130 with live music and proceeds to go to Emily. Again, our heart reaches out to all those wonderful people who are doing these wonderful things, because they really mean a lot to us!

Thank you so much! Virtual hugs to all of you! And please pray for all of those who have to deal with this awful disease.

(my intention is to start posting the same thing that I post on CaringBridge here and then eventuatlly only use this as means of telling you all about Emily!, I like Caring Bridge, but I also want to have something just for Emily!