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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Saturday, April 23, 2011

Saturday, April 23, 2011

Emily waiting to go home and for the IV to finish

Thank you everyone for your wonderful wishes and your sweet thoughts of getting us home together as a family for Easter!  It is absolutely wonderful to be home all together!

Thursday we left the hospital about 130 pm after Emily getting one more double dose of GCSF and platelets. On the way home, we received a call from the sitter that Brianna had a temperature of 101.5! GREAT! Doug and I quickly got Emily home and I went to pick up Jessie and Brianna and take Brianna to the doctor! Thankful it was just an ear infection in the right ear and she has two teeth coming in on the top.  Awesome, it was nothing major and something that we dont have to keep the girls seperated. While I was gone with jessie and brianna, Emily was on the front porch with daddy waiting for me! As soon as I got home Emily was on me and wouldnt let me do anything, I was holding her and she was laying on me! Daddy even fixed dinner because Emily wouldn't let me get up and do anything!

Emily still doesn't have any energy and still sleeping a lot! She is easily irritated and upset quickly, actually Doug and I were talking and wondering if possibly she could be a bit down!  She is a mommy and daddy's girl and is all about us, but she just doesn't seem happy! We don't like to see her this way, it actually breaks our heart! We are still trying to get her to eat!  Dr. Kahn said she should be ready to start 5th round of chemo on Wednesday, I told him no it needed to at least wait until Friday! Emily has lost entirely way too much wait, she is a serious twig, we can see her ribcage and backbones and no way is she going to start round 5 which is the same as round 3 where she didn't eat for days and was throwing up constantly! They are crazy! So we started her back on periactin to get her appetite back while she is also taking single IV doses of GCSF and diflucan at home! She complained still a lot about her gums hurting, we also think she got some in her esophagus so we are going to do the Traumeel a little bit different this time! Still do it on the days of chemo 4 times a day and then 2 days after chemo since it is still in her body for at least 48 hours after chemo pump has stopped!  She did get another bleeding from the mouth the first night home, but I think it was where the one popped in her mouth and the next morning we didnt see any sores except for a little one! So Emily ate some eggs yesterday and lots of Organic Rice Dream milk and a little bit of macaroni and cheese organic last night!  (did I tell you it was so nice to have a home cooked meal last night? Doug and I really need to figure out stem cell transplant (bc Emily could be there from anywhere from 15 to 30 days)!

So again thank you all for the wishes of being home together!  Emily doesn't have enough energy to go camping this weekend so we are staying home and just enjoying each other!  It is a lil too much on Emily to go anywhere!

Thank you to my parents, nanny and pop for coming out for a few hours last night so that Doug and I could go out Easter shopping!  With all that has been going on we haven't been able to get the girls anything for Easter! So we went out last night and pretended   To be the Easter bunny! I think the girls will be happy and it wi be a great Easter! Nanny did call me after being gone about 2.5 hours that Emily had woke up crying for mommy! So we hurried home!

Please continue to pray for all those having to deal with this! Cancer is no joke and not fair to place such a burden on any child or adult! This has been a life changing ordeal that I dont wish on anyone! Please continue to pray!

Love this quote: "always kiss your children goodnight, even if they are already asleep!" by H. Jackson Brown

Happy Easter

Thursday, April 21, 2011

Thursday, April 21, 2011

I have been trying to write this post for 3 days now.  I have been working at night time and then when I'm tired and ready to go to sleep, I pass out!

While this has been really hard on our family that Emily is here in the hospital and fighting a fever, there is always someone who is fighting and dealing with so much more.  Please stop over to Nick Franca's page and please leave some love and prayers for Nick and his family. Nick's family received some news about Nick that is a lot for them to deal with! Nick we are thinking about you!

Tuesday night marked 7 full days of being at the hospital and Tuesday night also marked 7 full days of having a fever.   Tuesday night at 730PM Emily had a fever of 102.6 and I feared that she wasn't going to shake this and the time here just seemed like it was going to add on.   So since she had another fever, they had to do blood coultures again.  Blood cultures have to be done every 24 hours that she has a fever to see if she has any bacteria going on.  The labs test them and they are reviewed at the 24 hour mark and 48 hour mark, but a computer is constantly checking them every hour and alerts someone to look at them if they see something wrong.  They also then hold them to see if they have any fungus growing. It has been very hard here because Emily hasn't wanted to deal with anyone but me.  Dad and I have asked her several times if Dad could stay here and she freaked out.  We know how the night would turn out that mommy would be packing up the girls and coming in the middle of the night to be here at the hospital with Emily and then daddy taking the girls back home to hope to get them back to sleep.  She really hasn't talked to anyone else while being here this time either except for me.   One of our nurses told us when she was younger and in the hospital a lot , she didn't want to deal with anyone else either but her mom, so what is Emily is doing wasn't abnormal, but I also know we are doing the right thing for her.  We are trying to not put as much on her as possible.

After being fed up with still being here, I was finally able to get the doctor to add in a medicine for fungus and they moved her CT scan from Friday up to as soon as possible so that they could look for fungus and also do the CT scan to send to Philadelphia.  So, they did her CT scan on Tuesday night around 7pm.  I must tell you all it was one of the quickest CT Scans Emily has ever done before.  EVER.

I will tell you all this has been really hard on me.  Emily has been very clingy to me (such as right now as I type this, she is holding on tightly to my arm), which honestly I love that my girls want to hang on me, however what I am having a really hard time with is that she hasn't eaten now in 3 days and she cries about everything because just about everything upsets her.  And the cry is kind of a quiet painful cry and she is having a very hard time. Wow what am I talking about, I am having a hard time and so is Doug and the girls.  I watch her and she has been crying over her sores in her mouth and every time she tries to drink or even try to eat, it hurts her.    We also think it went down into her esophogus this time because Emily doesn't drool much and since we have been here, Emily hasn't been swallowing much, so she has a pool of drool and when she goes to swallow water, she holds it in her mouth for awhile and then swallows it and it looks painful.  We have been trying to get her to eat anything and Tuesday night and Wednesday night the only thing we could get her to eat was half a thing of jello.  Hey it is something so something is better than nothing and we are ok with that.   Early Wednesday morning about 4AM she woke up to go to the bathroom and I noticed she has fresh blood on her leg.  So, I wiped it to see if she cut herself and there was no cut anywhere on it.  I then saw blood drip from her binky that was in her mouth and pulled her binky out to see blood lined in her binky, and her teeth were covered in blood.  So freaking out I called the nurse and then had her start to swish so I could figure out where it was coming from.  From one of her sores on the top of her mouth you could see the skin over her teeth, so I was getting qtips trying to clean it up.  She wasn't crying with me touching her which was awesome, because for at least 3 days straight we used so much trivalent and baby orajel to get the pain in her mouth settled. She would even hold the sponges in her mouth with the trivalent on it it hurt so badly.

Wednesday morning things were starting to look up, because by 730 AM Emily had gone 12 hours fever free and her counts moved from <0.1 to 0.2,  Woo hoo.  We were not in the clear by any means because Emily had to hold 24 hours fever free and counts continue to go up. By Wednesday night at 730 PM when the nurse came to take her temperature, I was on pins and needles worried.  Worried she would have a fever again, however Emily did not.  She made it to the 24 hour fever free mark.  Although she made it to 24 hours, Emily still isn't herself. Its hard to see her this way because we have never seen her this way.  Doug got here at 830 last night because he took Jessie out to get her some clothes so when he got here last night I just broke down.  I really try not to break down often, but just watching Emily and see how she has been it just finally hit me.  It was all the last straw effect.  Emily always amazes us, but honestly seeing her feel so down and blah, it really upsets me.   Last night at 1215, Emily said she was hungry. Wait, really?  She ate half a cup of jello and ice water.  She looked exhausted while eating it and you could tell it hurt her mouth to do so, but I really think she was hungry.  However as her counts continue to rise, the sores will go away.  Thank goodness! Emily was up until about almost 2AM last night which was surprising being that normally the IV benadryl that she had gotten around 10 would affect her, but it didn't seem to last night.  It was nice to have her awake, we walked Daddy and the girls to the door and then walked the halls for a bit and then even went to the playroom.

From the site of the tumor on the CT scan, Emily hasn't had much change from after Round 2.  I was really bothered by this when Dr. Kahn was telling me about this, however I think he saw my look of disappointment and told me not to worry that this was not unusual and most likely means that it is benign. He also indicated that those that have major changes means that the cells are dividing faster and also that you can see the mass of the tumor until they actually go in to do the surgery. While this is good to hear, I'm still nervous about it, but will have a positive outlook on everything will be ok.   The CT scan needs to be sent off to Philadelphia, Dr. Mattei for review so that he can see about how long he thinks it will take him and then schedule a date (that can always changed based on Emily's state of well being, counts and feeling and just in general...5th round is back to the cysplatin) with our doctors here.

Emily was previously scheduled to start the 5th round of chemo on Monday, however Dr. Kahn indicated her counts won't be ready for start on Monday, so he will have her come back and be checked next week and see about maybe Friday admission to start the next round.  Wow, the next round.  Am I really talking about the next round.  Yes, Emily only had about 4 days at home and then it was back in the hospital for 10 days.

Doug and I were talking though because the accumulative chemo has really given her the accumulative effect  of side effects has really gotten her.  We are going to be so much more careful, we have already been very cautious, but I think we are really going to be so much more cautious in hopes to keep her out in between rounds.  Its not fair to her to have be back in the hospital in between rounds, so stepping up and even being more cautious.  So friends and family sorry if we annoy you, but we gotta keep her healthy and out of this hospital, so things are going to be a lot more cautious about things.  I will be honest 10 days in the hospital, I'm ready for a bit of normalcy and going back to work and being with our family.  I worked at night time here at the hospital, but its not the same as being in the office with my co-workers.

So, it looks like Emily will be able to go home later today. Her counts are still considerably low, 0.9 to be honest.  Her platelets were low so she will be getting her 2nd platelet transfusion this week (2 blood transfusions in 10 days and 2 platelet transfusions in 10 days, thats all new territory for us also).  So, we have to be very careful that Emily doesn't get sick again! Easter is Sunday and my parents invited us to the house for Easter where the whole rest of the family will be, however I don't think we are going to be there.  For many reasons...to many people and I think we just have to be careful and not put Emily around too many people anymore, plus she still isn't herself...will she be by Sunday, can't push it...and if she is feeling at all ok we are going to take the girls camping, its Spring Break week, the kids need some time and going camping we don't have to be around anyone but us.  

So, we wait for Platelet transfusion and the doctor to come around and then hopefully Emily will be disharged before 3PM our nurse said.  Boy would that be nice!  I don't even know what the weather is like outside.  I miss my girls.  Doug brought them here to the hospital everyday in the evening but it was still hard to get some time with them here in the hospital because Emily was attached to me.  There were days that Doug would come in and Emily was laying on top of me and I was holding her like a baby.  I miss Doug a lot and just being with him. So I look forward to this weekend with our family.  Emily is kind of used to being here at the hospital, but I think it is all the drugs that she is on and the IV Benadryl, but I'm ready for her to get back to herself too. Doug I must really thank you, sometimes I don't feel like I don't it enough, but you did an amazing job this week just keeping the girls together at home and having to do all the running around and making sure they are fed and also making sure we (mostly myself since Emily hasn't really been eating) are fed.   You are an amazing father, stepfather, and husband and I really appreciate all that you do for our family!  Brianna and Jessie, I miss you girls so much.

So, as we head into Easter, I wish you all a Happy Easter, not sure that I will be updating again until next week because I plan to spend all the time with our family because I have missed them so much.   We are now just waiting for platelets and the doctor and hope to be out of here before 3 today!

Thank you everyone for all of your well wishes for Emily to get back to healthly and for just being there with well supportive thoughts and wishes.  Thank you!!! 

Monday, April 18, 2011

Sunday, April 17, 2011 at 1254PM

SUNDAY, APRIL 17, 2011 12:54 PM, CDT
Emily finally showing some energy and playing with legos before the Tylenol wears off and the next round of fever hits.
Fevers are still persistent actually this morning she had the highest one since we have been here of 103.9 and that was underneath the arm so it probably would have been higher orally!

Yesterday I called Children's hospital of philadelphia to get another opinion and to make sure if there was something that were missing or if we should have them do something else! Dr. Sullivan called me back and walked me through what their normal process is and pretty much VCU is on target except for the stop in the vancomycin, he said they wouldnt have stopped altogether for one day, they would have done a slower infusion which is what they decided to do yesterday and do it over 3 hours! Which Emily has been able to tolerate and not get the redmans again! The only other new piece of information that dr. Sullivan gave me was after day 5 they should be starting to check for fungus! So I mentioned this to the after hours doctor but we really didn't get far with it bc she said we need 48 hours of vancomycin! Saturday was 5 days!

Yesterday Emily also had a serious meltdown, one which I have never seen her do before...the screaming and crying wasn't out of the norm it was the hitting and kicking me! I cried with her! What do you do? I couldn't calm her and all she screamed and cried was "let me go home!" and "tell them I want to go home!" and "leave me alone I want to go home!" it broke my heart but I let her scream it out, the nurse was in here giving her IV benedryl to start the Vancomycin and as soon as she started to calm down the nurse said,"awe she just wants to go home!". And as soon as she said that Emily started again! Geez! She finally calmed down after an hour and a half and went to sleep!

Yesterday I had had enough with everything! It was momma on a road rage because I told the doctor I was done sitting here watching her crying bc of the sores and having persistent fevers which keep in her in and out of sleep! We need to do something this is crazy! Who wants to watch their child like this and what sucks the most is that there is nothing I can do! NOTHING! What I wanted to do was to take her out of here and somewhere else, but more afraid of what that would do to her! So that is why I called CHOP! We can't tell you how hard this is! Its hard that Doug can't be here or even be here over night with her and he is having a tough time with this! We have tried that route of doug staying here and Emily just won't have it! We were hoping that Doug could have stayed here last night with us but it didn't work out that way! I'm just tired of this! These fevers are persistent but all the other blood cultures have come back negative so they think the one was contaminated which CHOP thought that too! But seriously let's get the fevers gone! She wants to go home and round 5 starts in Another week! We dont have a date yet, but if her counts are right she will be ready! Will we? Round 5 is the cisplatin again the one where she was supposed to be there for 4 days and it turned into 8 bc of getting sick! WTF? Sorry this is hard to watch, hard to not take it from her and make it all go away! Why can't we take it away? I would take this away from her or any of my other children, but you can't! We still have go get a CT Scan so it can be sent go CHOP!

We have noticed that her eyebrows are pretty much gone and she only has a few eye lashes left! Her hair has been growing back, but after this last round I have noticed they are starting to come out again! Its starting to get warmer out too so Doug and I have to start thinking about sun hats because since she is on chemo she can burn very easily!

Anyway so tomorrow if no change in fevers which doesn't seem to be changing since 1 hour ago it was 102.2 I told dr sisler we need to start thinking fungus and doing something about it! She isn't here tomorrow but said she would leave a note for dr Kahn! Hey he didn't do anything for us on Friday so we should see how that goes! will he tomorrow? 

Please leave lots of love and thoughts for Emily and hope that this fever goes away! I'm not sure how much more our hearts can take of this! We miss our family together! We miss seeing Emily or even have the energy to do anything! 

This morning she had to get another blood transfusion (2nd one) this week and platelets! We figured she would need the platelets and they were at 5 this morning! Thankfully she didnt have the bruises but I guess since she hasnt had the energy would be why! Just surprised of the 2 blood transfusions in one week and I hate to see her get someone else's blood! 

As for now their is no end in sight as to when to gets to go home! Blood counts were still less than .1 this morning!

Doug has been amazing as he continues to hold down the fort at home and making us meals and just maintaining the normal of what he can! We continue on our organic journey and we feel so much better! I wish we would have started this route earlier! But we are there now! Thank you honey for doing all the running around and holding down the fort with the girls! Hard to believe Easter is next week and we are not ready for it! Jessie starts spring break Monday! We are thankful to having a wonderful sitter who takes care of the girls!

Please love and hold your babies and make sure you tell them as often as you can you love them!
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Saturday, April 16, 2011

Saturday, April 16, 2011

Emily on Wednesday at the start of stays at the hospital.  While she looks happy, she does a good job of taking the binky out of her mouth and smiling for you.
Still no update on what the bacteria was/is. At this point it is lets just treat it and get the fever gone, however I would love to know what it is that has caused this fever that Emily has had for the past 4 days, because it would make it so much easier knowing what is causing it.  Dr. Kahn didn't want to start Emily on another antibiotic after the Vancomycin because she was already on the Cefepime (which is a broad spectrum type of antibiotic).  

This stay in the hospital has been especially hard on all of us. Emily especially, because she just wants to be home or she wants to be camping.   I think instead of crying to go home now (which she has done for the past 3 days), she isn't happy about being here, but she is just trying really hard for us to be understanding as to why she has to be here.  She knows it is because of her fever and that it has to go away, but she is also in pain.  She has a few mouth sores (nothing like the amount she did after the first round, but she still has a few) that are really causing her some heartache.  These pesky sores won't go away until her counts start going up, so that is a real PIA.  

Do you ever meet someone and think what an amazing person they are and the compassion they have, is unbelievable.  I have never met another child like Emily.  All of my children are very special in their own ways, they really are.  But Emily just amazes me and she has this way about her, that other people immediately see as well and I am not just saying this because she is my daughter, but it is true....Emily will be 4 on May 30th and just the sincere compassion she has and the love that she has for other people is just amazing.  Emily always thinks about everyone else before her self and when she gets something she always wants her sisters to get something too. It just amazes me the type of person she is, and I hate, we hate that this mess had to happen to her.  I watch her and when one of her sisters are crying about something, she wants to give them something so that they don't cry.  Isn't that amazing?  I just hate that Emily has to go through this.

Doug and I really want her to have a very special birthday, again our hope is that she won't be in the hospital on May 30th, however it is really hard to calculate since we have round 5 coming by and then surgery so I am not really sure where she will be at.  Just amazing that she will be 4 years old on May 30th.  I can still remember the day she was born, what a very special day. 

Emily in her bed tent to take place of camping or at least to help it
Anyway, so since we are not camping this weekend and we are at the hospital dad went to 5 different stores and found a Princess Tent to put on the bed so we could go camping at the hospital.  It is by no mean the same, but she was happy (as well as to be expected) and you can see that she is trying to put the happy face on, but not overly happy!  I put clean sheets on the bed and then dad put it together.  Its pretty cute and it is even big enough that dad or I can get in with her.  It is not quite as long as we are, but we will make do.  Emily was very worried that I wasn't going to sleep in the bed with her and I told her that I would make do and would sleep with her. Its actually not that bad and if I could take a picture of myself, Emily and the tent I would, but I can't.  (check the blog, I did take a picture of Dad and Emily in the tent though, www.emilyhubbel.com)

Emily and Dad hanging out in the tent

From our understanding it still looks as if Sunday will be the day we hope to go home, we haven't heard any different and we just hope that things are in a upward spriral right now and not a downward.  This long period of having a temperature and the counts being low worry us because of the cumulative effect of chemo.  Dr Kahn did exlain today that there is a reason that there is 21 days for each cycle because her body gets knocked down with the chemo, the period in between will give it chance to come back up a bit, but not completely stand up and he said you don't want it too because you want to be able to kick this and get all the cells gone.  it makes sense, but the periods in between litterly suck because it is such a small period of time and then she right back in for another round of chemo!  UGH. But of course we are very worried about her surgery and the stem cell transplants because they do really worry us and the effect they have on her.  

Anyway, I am exhausted again and am going to head to sleep. 2AM again, it really kicks me in the but for the next day!   I miss the girls and my husband and am ready for some time at home with the kids and Doug!

Thank you so much for all your love and continued support, it means so much!!!  Hold your kids tight and love them with all your heart!  I love you my girls!

I love the picture of Doug and I, so I had to share.  But this is a picture of Doug and I at the end of the night at Home Team Grill for the fundraiser..  I LOVE HIM

Friday's Update: April 15, 2011

FRIDAY, APRIL 15, 2011 4:18 PM, CDT
I will update more later tonight, but wanted to let you all know we are still here and don't know anymore information about the bacteria that was growing! We are still wanting to hear!

It SUCKS because we were going to take the girls camping for the weekend instead we are spending it here! A good friend of mine Rachel whom I have never met is amazing and tries to always give positive advise! She said bring s tent for the bed! So Doug went to 5 stores today looking for a tent and he finally found one! Rachel always tells me don't let cancer get us, we will get cancer! While we agree with this whole heartily it is so hard for a almost 4 year old to understand! Emily will be 4 on may 30th, our hopes is that she won't be near a hospital! 

Hope to update you all with more later!

Thank you for the continued support please make sure to keep it up!
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Wednesday's Update: April 13, 2011

WEDNESDAY, APRIL 13, 2011 9:22 PM, EDT
Things have been very busy for us....and it all started Thursday evening when Emily went home. She was super happy to go home and be with her family, and wanted to await for family to arrive from Massachussetts! For us having everyone home and happy is what is the best. It was a very crazy time when we got home, because there was so much to do before family arrived. Family arrived and Friday was another busy day. By the way, I got my hair cut at Divas and Dudes on Friday as well and gave 11 inches of my hair to Locks of Love. I would really love to shave it off for St. Baldricks, but being that I work in the Corporate World, I am really not so sure how that would work out, so I decided to give the 11 inches to Locks of Love. Friday we had a lot of running around to do to prepare for the evening and at this point we still hadn't decided on whether or not we were going to take Emily to the fundraiser. By lunch time we had decided it was best to leave Emily home and not have her around all the germs that we couldn't control and thanks to Aunt Lynn we were able to leave the girls home with her. We also had family come in from Baltimore so we had a busy time.

Friday night for the fundraiser came faster than I ever thought it would. Leslie, my coworker, called me early Friday to see if we would be interested in saying something in front of the crowd. We declined mainly because it was a little much for us both and we knew we were both already pretty nervous about the night. So, hopefully we didn't bother anyone by not speaking but it was quite an overwhelming night for us. The night turned out amazing, we seriously want to say this: (I posted this on the fundraising event page)

The Hubbel family wants to thank the amazing response we received from family, dominion family, friends and everyone else who supported us! Doug and I were both very overwhelmed and super nervous about the event, but if was amazing what you all did for us! We are thankful to Leslie for the above and beyond job she did, thankful to family from all over coming to be there, aunt Lynn for keeping the girls at home while doug and I thanked everyone, thankful to VCU for the generous donation, thankful to the Richmond Mommies that stopped by, thankful for the beautiful magnets that were donated to us, thankful to David for taking the photos and just overall thankful! 

This had been very hard on Emily, the family and the support we receive is just amazing of the community out there! THANK YOU 

The turnout was amazing and it did really well, so a huge THANK YOU to everyone, thank you very much. Doug and I decided we made the right decision to leave Emily home, the night was so overwhelming it would have been a bit much to watch the girls and handle the night. As for myself, I don't think I have been that nervous like that in a very long time. What was also nice this was the first night since Emily was born that Doug and I have been out alone without the kids, so it was also nice to enjoy each other for the night and attend to one anothers needs with all that was going on that night. The magnets that were donated were just amazing and I can't tell you how much they were appreciated to Doug and I and to the rest of our family that we can tell everyone about our daughter. So, thank you. I will be coming back to you all soon because we are going to need more magnets and I couldn't imagine going anywhere else to get them, but it is important to us to share her name. I'm not sure if I told you all or not, but the reason why it is so important to share Emily's page is because when all this is said and done, it will turn into an Non Profit Organization where we give back to families in need after Emily is done. So that is what is important to us. So, please share my daughter's page and tell everyone about Emily! 

It was great to spend much needed time with family on Saturday and enjoy everyone's time together.. So I really want to send some love to our family in Massachussetts and Baltimore, thank you all for your love and care and for being there with us. 

Monday Emily had a hearing test and counts check. Hearing test went better than expected and we are very happy with that,. Thank goodness, I don't want us to deal with deafness so we will do what we need to do to make sure she doesn't loose that. Emilys counts, esepcially her white blood counts were .2, which is very low especieclly for the amoutn of time in between. Counts are dropping much more quickier this timewso we will see how this will work.

This is a quick update, but as of right now Emily is back in the hospital. Doug and I brought her Tuesday night because Tuesday she seemed to have a fever off and on all day and giving tylenol once, it should have helped bring the fever down. We are still here and as of right now we dont have an indicted time of when we will go back home. Emily has had a fever off and on for 3 days now which has been unexplained. Yesterday (Wednesday) the doctors came by and said that they found a organism growing on the culture which is also why it could be showing positive! they called it gram positive cocci.

Anyway, I have more to update with, but I'm so exhausted. I will try to get more information out to you all tomorrow, but as for now we are here and from what we can see it doesn't appear that it will be anytime soon. She had a fever of 103 last night at 1145 and had a reaction to the medication that she was prescribed for the bacteria. She got redmans twice! At this point, like I said, we are here and all she wants to do is be home and be with family! I miss my girls and husband and really just want to be home with them also. Thank you Doug for being an amazing husband, and taking care of us while we are here and also taking care of things at home with the girls. 

Good night all! Update you all again soon! Please leave Emily some love and thoughts that she will be going home soon and out of here!!

Thursday, April 7, 2011

Thursday, April 7, 2011

I know many of you are coming by looking for an update and I apologize, however its been a busy week.  We knew it was going to be a busy one with Emily being here at the hospital and then my being at work and just taking care of everything else. 

Emily has been doing great this week actually, as well as to be expected.   She has maintained the chemo without throwing up and not a lot of nausea which is great.  The part she has been having the most difficulty with is being here at the hospital.  She didn't want to come here from the get go, and I guess from being gone for almost 3 weeks, it really made it harder and I must admit it was actually kind of difficult for myself as well to get back into the groove of being here.  

By tomorrow morning, some of our family from Massachussetts will be arriving into town and helping us get things squared away and then for the fundraiser.  Doug and I still haven't made the decision on whether we will bring Emily or not, I'm more leaning to not.  but just honestly not sure.  I did talk with Dr. Gowda today on what his thoughts were and he indicated either way.  His thoughts of taking her that we shouldn't have her there long, she needs to wear a mask and when she gets home change and then his thoughts of taking her there are a lot of germs to worry about.  So, its one of those things that we really haven't made the complete decision on.   

Speaking of the fundraiser, my co-worker, Leslie has done an amazing job getting this all together.  I have told her everyday this week what a great job you have done and I am just amazed at what she has done.  Thank you Leslie. 

As for the fundraiser here is the information:

Friday, April 8th from 6PM to 10PM:  Home Team Grill, Main and Vine Streets in The Fan, Downtown Richmond This fundraising event is to benefit Emily H., the beautiful 3 year old daughter of my co-worker, Shannon. Emily was diagnosed with cancer (neuroblastoma) on December 23, 2010. She recently finished her first round of chemotherapy but has several more to endure. Proceeds will help the family pay for medical expenses, medically related travel, and other expenses directly related to Emily's treatment.

This event will feature free live entertainment by "Aftershock", silent auctions for a Gibson guitar signed by Brooks and Dunn and a Virginia Tech football signed by Coach Frank Beamer. Raffles will be drawn for: 

A signed Brooks and Dunn tour jacket, 2 signed and framed Brooks and Dunn posters, signed Tim McGraw Southern Voice CD, signed Tim McGraw poster, certificate for automobile detailing, (2) Dinner for 4 at Arby's, a Birthday Bash at Romp n Roll, and several tour jackets from Brooks and Dunn. Additional items are pending or in transit. Once they are received, they will be listed. Check back for updates.

Home Team Grill will donate 10% of all food and non-alcoholic beverage sales. Cash donations will also be accepted.

Please join us for this event and support Emily and her family!

If you come please wear RED to show you are there to support Emily, that would be great!  Also, I want to give a huge shout out to Keith Fabry Reprographic Solutions, who went so far for us to make Team Emily Car Magnets and donated them to us.  They started working on them yesterday and will have them done by tomorrow before the benefit.  Tuesday I posted that I was looking for a company that makes car magnets and for a little bit cheaper than what I was originally quoted and a girl, Jennifer that works at Dominion with me contacted me and said her husband works for Keith Fabry, let me check with him and see what they can do.  A couple of hours later, she sent me a message and said the company would like to donate them to your family!  I WAS IN TOTAL SHOCK.  So, I really want to give a huge shout out to this company for going above and beyond for us, it really means a lot.  Thank you!

The car magnets will be available for sale at the Fundraiser on Friday night for $3 if you are interested in getting one. (you can see a picture of it above)

As for now, we have about 1 hour left here at the hospital and then she will be done.  This morning when they checked her urine overnight her glucose was a little bit high in her urine, so they changed the IV fluids back to Sodium Chloride. I worked this morning and came back at 1pm so that I could be here when the doctor got here since I haven't seen him all week. Emily's calcium was a little low, but nothing concerning, but there are things that we can do at home to get that back up.  Also he told me that based on national average of weight, Emily's percentile is about 3%, so he is not concerned either however if it hits 10% then he will look into doing other measures, such as feeding tubes, so we are going to do what we can at home to make sure we don't hit that.  Overall she did well and Dr. Gowda didn't seem concerned.  Emily has an appointment Monday morning at 9AM for a hearing test and then after that we are to head to the clinic to have her counts checked.  We are going to be doing the GCSF (to get her counts back up) at home, so at least she doesn't have to get a shot.  The GCSF is a daily IV dose for 14 days, so we are going to try this and see if it helps her counts.   Overall, Emily did well this round and the next round is back to the rough round again!  In about 1 week she will have a CT scan so that it can be reviewed and then sent off to Philadelphia to be reviewed and have a surgery set up. 

Also my grandfather underwent surgery yesterday to remove the tumor found in his colon.  All I could do was think about him and how he was doing.  My cousin Jessica was there and was giving me updates on how he was doing.  Grandpa did great and is resting.  

Thank you for all of the wonderful people out there who are doing all of the amazing things for us.  Thank you to all of our family who is there for us!  Thank you for all the love, support and care and mostly just THANK YOU!

Monday, April 4, 2011

Monday, April 4, 2011

Its 230AM, and I really should be sleeping, however I can't.

First and foremost, please stop by Jenna's CaringBridge Pageand leave condolences for Jenna's family who lost their daughter to NB.  Doug and I have been following them for quite sometime now and I cried when I read this.  

Anyway, just an update to let you know where we are and how things are.  Friday Emily was scheduled to start chemo, however her counts were still low, so we are to bring her back in the morning and see where she stands to start. 

This week is a really busy week for us.  Since chemo is starting tomorrow, hopefully, Doug and I will be Emily tomorrow and he has taken the next few days off to be with Emily at the hospital so that I can go to work and still be off Friday and get done all the milion things that need to be done on Friday. So while I am going to return to work on Tuesday, it is going to be really hard for me to do so.  I hate to leave Emily at the hospital, however she is in good hands, Daddy! Obviously we also don't know if Emily will even be able to make an entrance to the fundraiser, because everything is all up in the air.  However I know everyone will understand.  Emily just can't be around the germs.  So, we will take things one day at a time and see how things go.

You know, I thought a lot about Jenna today and then all the other families who are going through this mess.  Its not fair that any child has to deal with this, any child.  And it is certainly not fair that our child has to deal with this.   Doug and I try to remain strong and every day is different with that, but we do try.  But what also isn't fair is that everyone else who has to deal with it.  The side effects of this is hard on everyone else to, but we all have to make due and just try to make Emily as happy as we possibly can and that is what we are doing.   While we know that this situation is old to many, its not old to us, because everyday brings on a new day and everything is something that we haven't had to deal with before.  And this situation will continue to be something new for us.  

As we walk into a journey of another round of chemo, then surgery, another round of chemo and then two stem cell transplants with extremely high dose chemo.  This is all scary and something that we just be there for each other and show Emily has strong she is being and taking this.   With the stem cells coming up, this summer will be only home and not out and about.  Our plan is to get our backyard cleaned up and hope to get the girls a swingset, sandbox in the backyard.  There won't be the pool this year, lake or water this year since Emily can't get her lines wet or there is the worry of infection. While we won't be leaving the house much, we need to have something for the girls.  They can't just sit up in the house, they need to have something, so we are going to need to work on that.  

Well I should at least try to get an hour of sleep before I need to be up and finish getting everything back together again to head to the hospital.  Mommy is nervous about what this new round of chemo brings.  Please le