Almost done with Round 6

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

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

Riding around on the IV Pole sitting on her Princess throne

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

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

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

I love her!

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

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

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!
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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.