Thursday, March 31, 2011

Here is the link to check out Emily's song done by Songs of Love.  Check it out and let us know what you think.

Emily's Song -- Songs of Love

Tomorrow we head in for Round 4 of Chemo.  I am a little nervous again, just because it is a different round and the side effects are different.  We have enjoyed not having been hospitilized all this time and being at home together, which was really nice, so going into this new rounds brings the all that worrying again!

Obviously everything has changed and its a new world for us. Everything has changed, and we are walking that new change as best as we can.  Its one of those things that of course I wish we could leave it and turn back and say it never happened, but we can't.  We just enjoy the times now, spend the time with each other that we can and have fun.  But when we say everything has changed, it has not just this, but everything else in our life, and sometimes that is hard to swallow.  Doug and I hold on to each other and just walk through this the best we can.

Enjoy your day!  Give your babies hugs and kisses! 

Songs of Love -- Emily Hubbel

Lunch break, so I thought I would post...Here is the song that was made by Songs of Love Foundation for Emily. If you know of anyone who could use a song, make sure to check it out.

Tuesday, March 29, 2011

Emily very happy to be camping

Its been a week since our last update and I truly apologize, as life has been very busy! Lots of things going on and just truly busy!  I need to get better as to keeping up with this, but sorry!  As one of those things to keep up with, my previous email Shannonh@couponmommyof3.com, has been canceled because I didn't have the expiration date on my credit card correct to automatically come out and I haven't been able to figure out how to get it to update, and get it back.  So, my email address is shannonhubbel@hotmail.com, so if you have emailed me and I haven't responded, I am truly sorry however I haven't had access to a personal email account in a couple of weeks.

We got home Tuesday evening from Phillyfrom camping and from the hospital and come home to get Doug ready to head to Massachusetts to be with family.  While I knew he needed to be there with family, it was hard for me while he was gone.  I truly love Doug and missed him while he was gone and just during this time even made it a little harder.  Emily too has a hard time because she doesn’t like when we are all not together, she likes us all to be together.  She doesn’t even like when Jessie goes to her dad’s house, because she likes us all together.  So, it is truly one of those things and I also wanted to be there to support family!

This week we had a couple of visits to the clinic for count checks.  We knew her platelets were very low because she literally would just brush by the couch and she would get a bruise on her.  Her legs were just one big bruise, her back had quite a few bruises on them.  We were very careful to make sure that the girls didn’t rough house so she wouldn’t have any problems and to make sure that she didn’t do a lot of jumping and carrying on. So Wednesday when she had a clinic visit, we were there what seemed like forever because she needed to get platelets.   Monday her WBC was .9 and Wednesday her WBC had fallen back to .5.  However we were told this was not unusual with the Cisplatin that she received during Round 3 of Chemo because it has those effects, but the Nulasta shot should have helped with her counts coming up.  Emily has also been complaining of her feet hurting, which caused some concern and the doctor had to come and check.  She did look at her feet but obviously didn’t see anything that made her wonder, and that she knows that tingling hands and feet is one of the side effects of the chemo.  So we were told to bring Emily back on Friday to see how she is doing.  Friday we went back, and it seems like it was a really busy day in the “Fish Bowl”, however Emily got to play with a friend, Eleanor in the “Fish Bowl” to pass time on.  So, it took forever for them to check her counts and to see where her counts were even at.  She is still at .5, which raised some concern that is the Nulasta shot even working for her since the last time she took the Nulasta, it never worked for her either.  So, this may be something that they review after the next round of chemo to see if she needs to get something else.   Today we had another clinic visit to check counts and in hopes to see if it was time for admission for Round 4 of chemo.  Today turned out to be another long day in clinic waiting for counts to come back.  Her WBC did finally move up to 1.2, however her ANC was only .4 and they need it greater than .8 in order to start Round 4. At first they wanted us to come back on Monday for admission for next round, however knowing that next week, (April 8th) is the Fundraiser for Emily (http://www.facebook.com/event.php?eid=128659887203582) and we both have off April 8th to have family coming in and spending time with family and if Emily went in on Monday, she would be coming home Thursday or Friday.  So, we head back Friday to check her counts and if her counts are were they need to be, then they will go ahead and start Round 4 of chemo.

This past week, I also celebrated my  33rd birthday.  The girls sent me some flowers to my work, which was really sweet and they made me some organic brownies, that Emily just had to have as soon as I got home from work.  How cute, right?

We have also really tried to get in as much camping as possible since the girls love camping so much.  Doug asked Emily what she wanted to do for Mommy's birthday and she said she wanted to go camping to Yogi Bear. So, we decided to that together as a family.  Plus it was only about an hour from UVA Hospital, and if we had any problems we would have somewhere to head to. So, when we have time we are camping and Emily is enjoying it and that is what matters.  Spending time together as a family is what matters.  And these days spending time together as a family is only limited to when we are all together at home, so we try to take advantage of that as much as possible.

One of the happy moments is that Emily has not been admitted to the hospital for a fever.  WOO HOO.  We have been very adament about making sure she keeps as germ free as possible and away from all the germs so that she doesn't have to go back for a neutrapenic fever and honestly aside from the many clinic visits, it has been nice not to have to go back for a fever and she have to be admitted for a few days.

This past Friday we also learned that my step-father’s father has cancer in his colon!  I can’t tell you all the sadness that we feel learning of this information along with our current situation and also with Grandma Connie passing. When the information was told to me, I just cried because I really hate what we are already going through and just to add more and for someone else to have to endure this mess, just makes me sick. I cried telling Doug, because its not fair, its not fair that anyone has to deal with this.

Rest in peace Grandma Connie, we will miss you!

We did get a call back from the hospital in Philly and the surgeon who reviewed both CT scans and the Bone Marrow aspirations.  I was able to talk to the surgeon and he felt very comfortable in being able to remove the tumor without a problem.  From what he could see it would probably be at least 4 hours and anywhere from 4 to 7 days for recovery.  He did recommend that we get a CT scan done after the 4th round of chemo, so that we could send off the scans to be reviewed and then be able to set up a tentative date for surgery after the 5th round of chemo.

Emily had a song that was made from Songs of Love Foundation, however gor some reason the information that they sent us to get the song off the website isn't working, so as soon as we get it working, I will post the information here for you all to listen to.  What a great song they wrote for Emily, it has a great beat to it and she loves the song.  I almost thought about posting the words to it, but then once we posted the song, you wouldn't want to visit it and listen to it.

Make sure you check out www.emilyhubbel.com because I have a few more pictures posted there. Thanks for continuing to check in and much love and thanks to all of the wonderful people out there who continue to do an amazing things for us.   Much thanks goes out to the Blackstone Volunteer Fire Department  who held a fundraiser for Emily and did an amazing job for her.  THANK YOU so much.  And thanks to everyone else again for all that you have done for Emily and our family, it really means a lot to us.

The girls and their matching hats.  I have one that matches with it also, but haven't gotten in the picture yet. Cute, right?

Mommy and Emily

Daddy and Emily

We are going to be getting family photos soon, this will be our first family photos that we have had in a very long time, so we are looking forward to that!

Make sure you hold your babies tight and tell them you love them! 

Tuesday, March 22, 2011

Today went pretty well, it went better than what I had thought it would go for many reasons.  The traffic was not bad (nothing like New York), Brianna did great for the day.  I know I was nervous that something would come back differently than what we already knew, but it didn't.  The one thing that did come back differently is that Dr. Bagatell and Dr. Shimayda both agreed it was Neuroblastoma differential instead of what VCU Health System called it as Ganglioneuroblastoma.  However when showing us on a graph where she sat, it really wasn't any different.  It didn't change anything such as being "Favorable" and "Negative" for the n-myc.

Doug and I both feel comfortable that all in all Emily is undergoing what she needs to be undergoing.  Basically saying, Chemo is chemo is chemo.  So since she is on the National COG Protocol it is the same chemo she would be on anywhere.  Basically what it would come down to is where we would get her surgery down after the 5th round of chemo.  We didn't meet with the surgeon today however Dr. Bagatell indicated it would be best to do that when we get the scan done.  She said we should do it after the 4th round and have it sent to both New York and CHOP to have the CT Scan looked it and see who feels most comfortable removing it.

What we did learn today that was great news is that although Emily's main tumor bed didn't shrink much with the first two rounds of chemo, she indicated it probably means that most of it is dead cells which chemo would not kill off.  She indicated after the 6th round of chemo there would be another re-evaluation before the stem cell too see where Emily was and that would really indicate where she sits.  Dr. Bagatell also looked at Emily's MIBG scans with another doctor, Dr. Grupp and neither felt that there was of anything to worry about with the place that VCU indicated that they saw on the base of the skull, because they couldn't really see anything.    She also explained to us about the bone marrow how the first bone marrow aspiration was positive and then this was negative and she said please don't be surprised if the next one shows them again.  She said it is not abnormal to see that since they are pulling from 2 places (2-point bone marrow aspirates).  

Overall, our experience was positive.  We did have Emily's counts checked because we felt her platelets were low because prior to going she had a nose bleed. Her white blood counts are going up 0.9 (which means no nuetrapenic fever, which means no stay in the hospital), her platelets were 22 and Dr. Bagatell said there policy is not to give platelets until at 10. She did have a few nose bleeds today but nothing that lasted over 5 minutes and we figured waiting until we were home (since she has clinic on Wednesday morning) to check her counts again to see if she needed platelets would be best in case she had a reaction at CHOP.  She spent a lot of time reviewing Emily's case and she didn't feel that what she reviewed was really anything different or abnormal from other cases that she had looked at and that she wasn't sure what was causing the confusion on Emily's case.  However how Emily was diagnosed and the treatment she is receiving is where she should be.

I am happy that Doug and I have done our research on this disease because it really helped knowing what was going on and what to ask.  It seemed as if Dr. Bagatell was surprised that we knew what we knew, however I am happy that we know what we know and happy that Doug has done as much research as he has done. We did also learn that there are other parents at CHOP that are using Traumeel and are also having positive outcome just as we are, which is definitly great to hear because no one seems to have heard of this at home.

So we head back home tomorrow and Round 4 will start on Monday.  We have enjoyed spending time together and camping.

Heading off to bed now!  


(Sorry I realized that I didn't take any pictures today!!)

Sunday, March 20, 2011

Hey guys, its been a pretty long week around here.  The beginning of the week was pretty tough as no matter what Emily tried to eat, she was either throwing it up or coming from the other end.  She was hungry, but just couldn't eat.  We only ended up using the "Little RV" one night however on Monday night and it was pretty easy to use at home.  We used the disolvable Zofran as well since she couldn't handle swallowing the meds and used Decadron through the IV to help with Nauseau.

Tuesday and Wednesday she tried to eat more food, but just continued to feel like everytime she ate that she was going throw up.  She would eat a little bit, but each time ran to the the bathroom hugging the toilet.

Thursday we had to go to the clinic to get her counts checked, and her counts were low, but she hadn't hit rock bottom yet, her White Blood Counts were .5, so it was a first time we had gone and not hit rock bottom, but she is doing great.

Emily has lost a considerable amount of weight that we are keeping a great eye on.  Even got her on some meds to get her appetite back.  We have noticed that today she did really well eating, so we are really keeping an eye on her eating and making sure she doesn't drop below her normal 30 pounds, that is very important to us.

It is with sadness that we tell you that Grandma Connie lost her fight tonight.  We received the call last night that she wasn't doing really well and packed up to go.  Grandma Connie is no longer in pain, but we really want to tell you, WE LOVE YOU! This is a part of our journey that makes it really hard because of what Emily is going through.  Doug and I both are pretty torn up about it, but we know she is in a better place. Please say some prayers for our family and all of his family in Massachussets.

Monday we have our appointment with Children Hospital of Philadelphia to get a 3rd opinion just to have them review all of the scans and everything that VCU Medical Center has done. Doug and I are not nervous about what we already know, we are nervous about is there anything that we don't know that may come up. We also will be meeting with the surgeon to help get a better knowing of what we may be doing for surgery after the 5th round of chemo.  Then Tuesdy we will be back home and then Doug will head back out again to Massachussetts to be with his family for the funeral.

Off to spend some time with Doug while the girls are sleeping. We are going to make the best of the time away before the next round of Chemo starts in another week.

I will try to update tomorrow with some pictures. 

Tuesday, March 15, 2011

Emily waiting by the window for daddy to come and pick us up on Sunday.  She is smiling but underneath not feeling great.

Well we ended up having to stay in the hospital Saturday for more hydration because Emily wasn't holding anything down, she was still throwing up and and diareah had started.  Counts on Saturday morning for her white blood count was 4.1... Saturday she couldn't hold anything down not even the Life Mel Honey...Sunday morning her counts were 2.7.  I hope that we can get her counts up and she can start taking the Life Mel Honey again because I can really see that it is working being that Monday 3/7 they checked her WBC and it was 3.2 and then on Thursday morning I believe it was her counts were 4.5. Saturday was a long day though staying in the hospital...Emily felt horrible and each time she got sick, my heart broke, it made me sick to my stomach. The saline flushes were making her sick everytime and she would immediately throw up.  Once the nurse figured out it was the quick push back up on the IV (or RV as Emily calls it) it was pushing the Saline in too quick and was making that happen.

Sunday the status hadn't changed any but she was very ready to go home.  They checked her counts and WBC was 2.7 and her hemoglobin was 7.3, so he wanted for her go get a transfusion.  It took forever just for the blood to come up and once it did get started it took 3 hours.  This was the 3rd time she has gotten blood, and everytime I hate it even more.  Emily finally got to go home later yesterday but with the deal that head back to the clinic to get her Nulasta shot and for Critical Care to come to the hospital and show me how to use home fluids if she wasn't eating or drinking.  

We picked up the girls and headed home.  It called for a late dinner, but Emily tried, she tried mashed potatoes.  It was a no go,  tried toast and it was a no go.  She woke up over night with diareah and throwing up, which she did several times at the hospital.  Needless to say this round hit her hard, harder than I thought it would.  She tries to have high spirits or smile when I take pictures, but really if you look at them, you can tell she doesn't feel good.

Emily waiting for the IV Fluids to finish so she could go home with "Little RV".  She was exhausted!

We took her today to get the Nulasta shot and I hate giving my babies shots, I really do.  She did well, it is just the initial no I don't want to and then it is over and she is fine.  The nurse practioner, Ann wanted to give her 2 hours of IV fluids and Critical Care would meet us to show me how to do the Home IV Fluids.  Emily calls it the "Little RV".  So they sent us home with IV decadron for nausea and fluids to do overnight for the next three nights. Today she hasn't had any diareah or throwing up since 10AM, but has only eaten watermelon tonight and was able to hold it down.  She tried to eat a piece of macaroni, but immediatey knew her stomach couldn't handle it and thought she was going to get sick, but she didn't, she was able to hold it down.

So tonight she has gone to bed with "Little RV".  She was exhausted. Dad and I got really worried though she turned pale and she was really cold to touch.  We checked her temperature in her ear for about 45 minutes, and it was 95.3 to 95.6 and it scared us.  I sent a text to another NB mommy friend and then we decided to call the oncall at 12AM.  She wanted us to check by other means, a low temp could also mean an infection and cause for concern.  So we checked under arm and it was 96 and then we woke her up and checked under tongue and it was 98.7.  We finally felt better.

We are so ready to have our playful Emily back who liked to giggle, because we haven't seen her in a while because this round messed her up so much, so we miss her.  We miss her a lot.  Her sisters don't really know what to think, because she hasn't been around, but we hope that she will be coming back to herself here soon.  

We have to take her back to Thursday to have her counts checked and see where she is.  Please leave lots of love and thoughts as our biggest concern is too keep her counts up so she doesn't go back until the next round starts.

Thank you everyone for your love and support as we are going through this, it really means a lot to us.  Good night to all, I gotta head to sleep to get up for work tomorrow!  

Saturday, March 12, 2011

Emily sleeping in her prayer blanket from Gayton Church

Its really been a long week and today has been a very long day! Emily has been having a hard time in several areas (meaning wanting to be home, getting sick, having peed in her pants)and so have Doug and I.  No one will ever understand what it is like to stand in our shoes unless you have been there, you just can't.  It is every parents worse nightmare to hear that your child has cancer, and it truly is devasting. As parents its hard to stand in these shoes and then feel like we have to function day to day with everything else that has to happen, going to work, keeping the house clean, change diapers, get dressed, just the day to day duties and then on top of that make sure that Emily doesn't get sick so keeping her safe from all the harmful germs out that.  This past week has been really hard and even moreso that Brianna was diagnosed on Thursday with Influenza A.   With finding that out, we haven't got to hang out with Brianna or even get to see Daddy all that much.  So, the week has been very long and hard.  I have tried to find ways to get Emily to take Tamiflu, but she hasn't been able to hold it down, so I haven't forced it.  Brianna is taking hers, dad is putting it in ice cream and she is able to take it that way.

Sorry to start the post off that way, but in all honesty, this is just hitting harder and harder as time goes.  Doug and I just try to do what is right with everything and sometimes we will never know if it was right or wrong.  It feels that this just gets old for everyone else involved but only involved not directly and to us every day is a new day, that we don't know what is going to happen and what it will bring. The past couple of nights have been filled with crying for many of reasons, but one because we miss our family being together and just being normal.  Its hard to know what is normal before, but all the things that were normal before, we all just took for granted because so quickly they were taken away.  We don't have a normal anymore, we don't know what the date is anymore, we don't even know if we were supposed to do something, because so much has been going on.   There isn't free time anymore, I keep saying I need a haircut, maybe even a highlight or just something, Dad and I need a date to have some time together, but there isn't time and if there was time, I feel that we shouldn't be away and eats at me. Dad has been wanting to get things done around the house, and it is just hard to get all those things done that we just took for granted before.

But unless you are a parent of a child with cancer, family memeber of a member with cancer or dealing with cancer yourself, you will never what it feels like.  I can't sit and say I know what Emily is feeling in her mind or even thinking or how she feels.  She is pretty good at voicing her opinion and her thoughts, but I only wish I knew what exactly she was thinking.  but Dad and I only wish for her to be happy and as pain free as possible as she can be and we will jump hoops and wholes to do that for her. 

But what makes this even harder is that I miss my husband.  I miss him. Emily misses him. He is my world, he is her world and I couldn't imagine going through this with anyone else and I could imagine Emily having any other than Doug because he is he is the best father that anyone could imagine..  But we don't have a lot of time with each other, and when we are together, life is chaos.  Keep the house clean, make sure no germs are anywhere, taking Emily to the doctor, keeping the other girls well, grocery store, , working full time, it is just there is no time and honestly I can sit here and say I took for granted the time we had together before and I wish I could take that back and have done things differently, but I can't.

Emily finally peacefully asleep after 4 rounds of sickness and then getting Ativan to settle down

So far this has been the worst round of chemo and I know it will be the same when we get to 5.  It hit Emily quick and just watching her dwindle from the effects of chemo just hit me hard.  Here it is 3 AM in the morning and Emily finally went down to sleep after having about 4 episodes of getting sick within about an hour of time.  Requested ativan and Emily is sleeping peacefully! Emily is such a sweet girl, while she is getting sick, I had her the pan to throw up in and she looks up in between throwing up and says "Thank you Mommy!"  Our days have endured at least 2-3 tubs a day because they make her body feel better she says, at least 2-3 PJ's are changed a day because she either has an accident or gets sick on her clothes, bed changes because they are wet, cuddling, potty, more cuddling because Emily has been very clingy and throwing up and trying to figure out what she can hold down.  We are still keeping up with the traumeel and Life Mel Honey and hoping that it keeps the mouth sores away and keeps the white blood counts up and trying to work that around when she is feeling ok and not throwing up.  I hate to see Emily get sick, I hate to see her sad because we are here, I hate to see her sad because she misses her family and we haven't really gotten to see anyone.  I hate to see her cry.

On other note, CHOP (Childrens Hospital of Philadelphia) should have all of Emily's information and we should have an appintment to meet with the doctor and the surgeon in another week or so.  I should be hearing from them on Monday to schedule that. We have heard some really good things about CHOP and look forward to meeting with them and getting a confirmed 2nd opinion and knowing where we are going moving forward with were we will be taking Emily for surgery after the 5th round and then just making sure that everything is diagnosed correctly and also making sure that all the spots were found and are known outloud. 

I'm sorry if this was sad, but Im not having a good day.  Ready to hear this is over and it was only a nightmare, and you can now go home.  WOO HOO, wouldn't that be nice!!

Well tomorrow is a new day and Emily gets to go home. She is very happy about that.  The vomitting could continue for another 48 to 72 hours.  Her smells are crazy, because she can smell anything and if they are strong, she will throw up,.  We never know what to cook her because she is constanlty changing in the food arena area.  Emily never used to like chicken and here as of late she likes chicken. Emily will have her counts checked about 6AM and we will know where she stands before going home.  We will have to bring her back on Monday to get her Nulasta shot and then charge on and hope that no fevers bring us back to the hospital. 

Love to babies and hold them tight.  Make sure you tell them you love them and take each day and treasure it.

Thank you all for your continued support and prayers that you all leave and say to use.

Please leave a message on the guestbook, we are always reading them and they really help.  THANK YOU!
http://www.caringbridge.org/visit/emilys/ 
http://www.emilyhubbel.com/ 
http://www.facebook.com/emilysjourney 

Wednesday, March 9, 2011

Photo of Emily on playdeck here at the hospital.  We went outside for about 15 minutes yesterday to let her walk around.

So Doug says people are waiting for you to update about Emily and honestly sometimes I know I need to update, but the words run around in my head, my thoughts go array and I don't know what the heck to say because I start to write sometimes and just get lost. 

Anyway...yesterday Dr S came by to visit Emily and I and I explained what had happened and how I was upset by what had happened.  I am starting to believe that people around here don't like me, but honestly I don't care, because I am here to make sure that my daughter is taken care of in the right way and everything is done like it is supposed to be.  I'm on top of stuff and don't like anything roll off, because I make sure that things are done right. She did explain about the levels of the HVA and VMA and the nurse practioner explained it wrong. Ugh could I say, listen lady we have already gone through enough, and already worried enough, do you need to add more with wrong information?  But she explained that the levels that NP was looking at could change daily or even hourly based off of what you eat or drink.  I also explained to Dr. S about the overnight doctor who came in demanding that Emily be put on D5 and she added Emily didn't even need to be on any fluids since she wasn't on chemo.  She did tell me that anytime I don't agree with something or something doesn't seem right or that I can't get the answer I need, that I need to tell them to page the oncall oncologist and I need to speak to them over the phone.  Trust that I will remember that next time.  We walked through Round 3 of chemo and she explained what everything was, especially the mannitol which I wasn't familiar with.  While I knew the medicines were different this time, but what I didn't realize is that that were running for longer and I knew that the Cisplatin was quite toxic.

Emily didn't do all to bad yesterday except for that she didn't want to be here, she is tired of being here and is so so ready for Home Sweet Home.  You know no matter what we do here, it doesn't help, which makes life really hard to think that in a couple of months Emily will be undergoing Stem Cell Transplant which means we will be here from anywhere to 3 to 4 weeks. She is going to go crazy!  Too bad the rooms can have change overs for when children come in to cater to their needs and their likes.  Last night she did run a low blood pressure, which the nurse was concerned about,  but after about half of hour when she rechecked it, it was normal.

So, while I already officially hate cancer, I hate it even more.  I really do.  Cancer sucks and even moreso NB sucks.  Doug and I read so much about NB and honestly a lot of it isn't good, thankfully there is positive stuff out there, which keeps us going because we know that we are going to get through this. But we OFFICIALLY HATE THIS CRAP! However what makes life hard is that Doug's step mother has cancer and isn't doing well. Grandma Connie we are thinking of you all the time and we love you more than you can ever imagine. 

Today was Day 2 of Round 3.  During the day I could start to notice the side effects settling into Emily's little body!  The grumpiness was definitly increased today and being funny with Emily I wrote a little note to put on a big sticky on the door, "NO GRUMPINESS ALLOWED".  She laughed.  During the day she started to complain of stomach pains and I noticed she wasn't eating as much, but she was still eating.   I got a call from the sitter also saying that Brianna felt warm and hadn't eaten much today.  Seriously really!  AGAIN?  She was just sick, we don't need her sick again especially with Emily coming home either late Friday night or early Saturday morning.   So Doug brought us dinner for the evening and then went to get Brianna and stayed home with her just because we dont' want to get Emily sick!

Jessica came by to visit tonight and while she was here Emily complained that her stomach hurt, she tried to drink some water to calm her stomach and then she said in a hurry I need to go to the bathroom and got off the bed.  As soon as she got off the bed, she got sick all over the floor.  Soon thereafter started to cry for home again!  I felt horrible for her, I can't even stand to get sick, much less watching someone else get sick and my daughter at that being the one.  I don't like to see my kids sick and when they are, I really hate it.   So needless to say I hope that this isn't the start of a rough time because Emily already had a pretty rough day and doesn't need anything more to make it worse, it should wait. 

We are praying for an comforting night of no getting sick and so far so good.

Tuesday, March 8, 2011

Emily and Daddy waiting in the clinic.

Mom here, Emily is still sleeping and I am awake.  I fell asleep last night with the laptop in my lap hoping to tell you about our day yesterday, but that didn't happen.

Emily playing a game on the iPad

It was a long day yesterday, especially in the clinic, because we were in the clinic a lot longer than we usually are.  Emily made counts and we found that out within an hour and her WBC are back to 3.2 which is back to chemo world counts.   We waited for the doctor to come in, but the nurse practioner came in and we discussed with her about the HVA and VMA and our nurse had stated that they had gone down, but I wanted to get what they were when we started this process.  When the Nurse Practioner came in, she said they had gone up!  WHAT?  Doug was pretty upset because there wasn't a consistent of what it really should be and he felt that shouldn't we see the levels going down since she has been on chemo? What a minute.  We were so confused, it felt like we were just getting a runaround.  We were told that Dr. Godder was going to come in and we waited what seemed like a long time and honestly it was a long time.  We got to the clinic at 11AM and didn't leave to go to the room until about 4PM.  Again we never saw the doctor.  Emily is starting Round 3 which is a new round for her and the chemo is different as well as how the protocol for her time is different.  We were told that we would see Dr. Sissler (which we haven't met her yet, and I am not sure if that is spelled correctly) in the room and we could get our questions answers and walk through the new round of chemo.

10 minutes to 7 came last night and still no Dr. Sissler, the residents and whoever else came in and we talked about the HVA and VMA, which they didn't have answers, but assured me that Dr. S would be in and we could talk with her. The nurse was starting Emily on her Fluids because they finally came in and I asked if she could talk with us about the protocol.  As she started to talk to me about it, I had questions and didn't understand some things and the doctor should have walked us through this anyway, I asked for someone to come in.  The attending came in, but she didn't have all the answers that I had asked and at that point I didn't have a reasurrance of starting a new round of chemo without the consultation of a doctor like we should have had to begin with.  Dr. Gowda explained to us with every new round (new drugs and procedures) we would be walked through what the process was and what to expect.  As a mother this also helps me to make sure that what they nurses are doing is the correct thing.

So at the point the nurse took her off the electrolytes that she needed for the protocol and I asked if she could just run saline. She brought it and hung it and said she needed to find out with the overnight doctor at what rate.  We were fine if she was going to be on IV for hydration purposes overnight, perfect being that she was going to start a very toxic round of chemo that dad and I were already super nervous about to begin with.

The oncall doctor came in about 1030ish last night and said he wanted to start Emily on D5, which the oncall doctor was someone we had met back in the ER a couple of weeks ago and he was super nice then.  I asked him what D5 was and he said Dextrose, sugar water and I told him since she is eating and drinking normally there is really no need for that and he was adament that she needed.  She doesn't need it, she is not on chemo right now and honestly she should be at home since we haven't started chemo, there is really no need for it. I also explained that Dr. Gowda or anyone else for that matter has never had a problem with just using saline IV fluids until we need to use Dextrose (D5) should she not be eating or drinking and needed that.  He seemed rather ticked at the fact that I was going back and forth with him and that I finally looked at him and said listen if you say that you have to give her D5, I will tell you we are heading home for the night and see you back tomorrow when the doctor is ready to see us and talk about the new round.  He said let me go and read the notes and I will come back. He came back and said I am just going to keep her off the IV for the night.  Not a problem, sounds ideal in my world.   I talked to Doug about it and he was pretty ticked hisself, this whole matter has been very frustrating in itself.  Both Doug and I talked to Dr. Gowda about the dextrose and he was very fine with not giving it as well as we are completely on organic food and it not to have them bring in any food here.


Obviously after the day we had yesterday, Dad and I are even more ready to have a second opinion at CHOP and go from there.  We did get the information over to the nurse in the clinic and they are already starting to work on.

At this point, we just wait for the doctor to come in so we can get this started.

I just had to share a picture of the girls over the weekend. Of course I couldn't get Brianna to look.

Friday, March 4, 2011 Part 2

Today I made a phone call to CHOP to get a second opinion.  I had to speak withs solid tumor nurse triage and she was absolutely amazing! She took all of our information and said I should receive an email with the checklist by Monday. She said I would also hear from the registration by Monday!

I must admit I was rather shocked to get the email from her as well as hear from registration! She already forwarded our information over to surgeon and the neuroblastoma doctor specialist. I explained our situation and what had occurred and she explained that "our situation" has happened several times! Seriously?? That is scary!

So we charge on and Do what we need to do to move forward and get a second opinion!  I am overly nervous about this next round of chemotherapy with the serious side effects!  One of those is hearing loss!  I also understand many have horrible reaction and throwing up! It kills me to watch a child throw up!  So we are hoping we can keep this to a minimal!

Tonight we are waiting for dad to get home and then camping tomorrow night!

Hug your kids tightly and love them with all you have!

Friday, March 4, 2011

Another long week before updating and I apologize. Just so much going on.  Did we tell you that Emily loves camping so much that Saturday night we slept in the camper right in our own driveway. She has been asking every night since if we can sleep in the camper.  This week has been a nerve racking week with all the scans and preparing for round 3 of chemo.

Emily before the scans on Monday

Its been a long week, but Emily is doing well! Monday we had two scans, Emily had her CT scan and bone scan that she had scheduled.  Doug and I were so proud of her, so so proud of her.  She needed to drink the contrast and the lady said if she couldn't drink the contrast they could put a tube in her nose to get the contrast down and Emily was not about a tube in her nose and drink the contrast down in 1 huge gulp.  The lady was shocked. After a half an hour she was on her way to get the CT scan done. She laid there and let them take the picture and she was done.  The bone scan was a little longer, so we were worried that she wouldn't be able to sit still, however Emily did great she just complained that her feet hurt and daddy rubbed them for her.  But she did great and she did it without any anastesia which was what we wanted.  We were very proud of her and she couldn't wait for the scans to be over on Monday, so we could take her to Whole Foods to get some food.  

The picture is of Emily at Whole Foods so excited to be there to get some food and still on a high of great counts and not needing to wear a mask.

Tuesday she had to get the injection for the MIBG and we received notification that the Bone Marrow came back CLEAN.  We were very happy to hear this.  VERY HAPPY. We also got the results back on the CT scan that Emily's CT scan done during the first round was 3.4 X 2, and after the 2nd round it was 3.4 X 1.8.  So we are making some progress and it is decreasing in size.  They indicated that the bone scan came back with the same uptake in the upper legs that we were familiar with before.  And to wait for the MIBG to get final results.  They also wanted Emily to do a urine sampe to check her catacolomines on Wednesday when she comes in.  They checked this previously and her levels were elevated for neuroblastoma markers.

Wednesday Emily had her MIBG scan and we knew this scan would take 45 minutes and that Emily wouldn't be able to sit still that long. So, while we didn't want to use the anastesia, we went ahead and let them do it, because we knew she wouldn't sit still.  Once it was over, she asked if they were going to take her picture.  I told her they did it already, she fell asleep.

So we received notification today that the MIBG showed that the lesion that she had in her knee was gone.  Um yes, I said KNEE...  Doug and I were upset because there was no talk of the knee before and the only thing that was every brought up to us was about the 2 places on both legs that were adjacent to each other.  There is still showing the 4 places in her legs, but that the markers aren't as bright on them.  He also indicated that the bone scan done back in December showed uptake in her skull and it still showed that uptake from the bone scan she had done on Monday.  Again, WHAT?  That's right another spot that were not made aware of.  Dr. Gowda indicated that the place in the skull only shows in the bone scan and not on the MIBG scan and that it could be nothing. He said that he could be something she was born with, something that happened during the birth canal or something that she hit her head or something.  

I talked to Doug about this and while we will still move forward with Round 3 which starts Monday, we both feel like we want to get a 2nd opinion on the scans.  We were both bothered that we were not made aware of those places and we both felt it was of important information and is there anything else missing that we need to know about.  While one would think that maybe we missed them telling us that information during a stressful crazy time, but not both of us would have missed them talking to us about this information, so we know it was not told to us.  So, Doug found that we could have our information sent for a second opinion to CHOP, so I think we are going to send them our information and have them check over everything. 

Today Emily and I also stopped by Diva's and Dudes to see Tiffany.  Someone had made some organic cookies for Emily that looked like flowers and put them in a pot.  They made Emily smile and they also took a picture of her with them there. Once I get it, I will post it.  Emily loves Diva and Dudes and it seems love her too.  They do such an amazing job.

Emily told Dougie tonight that she really misses her friends at school.  That is really the first time that she has ever said that and it really made us both feel bad knowing that she misses them and that she can't go to school.  

I think we are going to go camping for the weekend or at least one night to get away.  Emily starts Round 3 of chemo and we just want her to have some time away from the house and have happy thoughts before heading into the next round.  Please say prayers for Emily as we head into a new round with new chemo medicines that we are unsure of and we are nervous about.  We are happy to report that she didn't get any mouth sores during Round 2 like she did with Round 1 with using the Traumeel, so our hope is that it continues during Round 3.

Again thank you to everyone who has been so amazing to our family during this time in need, it really means more than you could every imagine.  Our hearts go out to each of you and we truly appreciate your kindness, your support, your love and comments!  Thank you


Also make sure you say some prayers:
--Max lost his battle in neuroblastoma, please head over and let his parents know we are thinking about them during this time. http://www.caringbridge.org/visit/maxwellbulman .
--Meesha just finished her transplant and is doing well.  They are working on getting her counts up, we are always thinking about you Meesha... 
http://www.caringbridge.org/visit/meeshajoshua. 
--Also Sarah and her husband's son, Wilson (Biggie) is currently in PICU at VCU undergoing ch14.18 antibodies for neuroblastoma. http://www.caringbridge.org/visit/wilson

Has anyone seen this video, "Pray" by Justin Bieber?  I ask because for one it hits so close to home and for two, Emily loves this song.  She listens to this song only about 50 times a day and each time sings a long.  She even watches the video. It is amazing because of the closeness it hits for home.