Wednesday, June 29, 2011

Life has been busy with working, taking Emily to scans, and just the day to day life.  So, every night I think I will update Caringbridge tonight, and I fall asleep laying the girls down to bed.  I guess that means I am exhausted.

The past 2 weeks have been filled with getting Emily's scan post "induction" period.  Scanxiety has definitly played a role during this time and one where we are just ready to have all the results and move forward. Here is where we currently stand.  The MIBG didn't show anything where Emily's tumor bed was, which is great, however the part that I had a hard time with is learning that the 6 rounds of chemo hasn't touched the 4 sites on her iliac bones and her femur.  For me, I was hoping for NED and just hearing this, put a damper.  I did ask,so can it still spread?  The answer was "Yes!"  again not what I was expecting to hear.  The CT scan showed the the tumor was completed removed and it showed a collection of fluids around the kidney from where the tumor was removed.  The oncologist indicated this was normal and nothing to be concerned about. This week Emily has had her Bone Marrow Biopsy as well as the Bone Scan.  We have not heard anything back on the Bone Marrow which is the other one that concerns me.  I remember Dr. Bagatell from CHOP telling us don't be surprised if one shows Bone Marrow shows you clear  and the next one does not.   The Bone Scan from today from a pre-liminary stand point, looked clear, however we haven't gotten a definite fron the oncologist.  

So at this point, Emily is free from the hospital, clinic, in that vicinity after today for 2 weeks.   She had a clinic visit today as well to check her counts and everything is on the way up up.  So she is safe to head to Disney World. 

Tomorrow we have family coming in from Massachussetts, they come down every July 4th and we spend time with them.  We are looking forward to a calm relaxing weekend and spending some time with the family.  We are in search of a campground for the weekend though, I think we waited to long and now we are having a hard time trying to find a place for the weekend.   Hopefully we will find something to take the girls for the weekend and just enjoy some time away.  Wednesday morning the Love Limo will come to pick us up at home to take us to the airport and then we will head to the airport to be taken to Disney.  The kids are very excited and we are all looking forward to taking time away from "C" and just enjoying time together as a family!

Here are a few people that Doug and I have heavily on our minds and we hope that you will stop by and leave them lots of love and we sent you there! 

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Meesha is such a sweet and kind girl, and so is her mom and dad.  We know them because they are local and Meesha also goes to VCU Health Systems where Emily goes. However last week they were away and were called to come back for some extra scans...please leave them some love and peace as they go through this time ... http://www.caringbridge.org/visit/meeshajoshua

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Brooke, oh how she reminds me so much of Emily, in just how her mom writes about her and how she is.  Emily would really like to meet Brooke one day and Brooke would also like to meet Emily one day. Hopefully one day something can be worked out so that they girls can meet.  Jessica, her mom, is also a very sweet women, we talk through emails or what have you ... however right now they are going through a hard time ... they are very far from home, from dad while Brooke has to endure extra chemo at Sloan Ketterling in New York.  Please also stop by Brooke's page and leave her some thoughts and love during this time away from home.  http://www.caringbridge.org/visit/brookehester

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We think about all the families that are having to endure this nasty mess and wish it could be taken away and never be seen again, but its a reality of one that we all have to face and hope that it will go away and never come back.  Its been a hard reality for us to face.  We sat in the clinic with Emily the other day when she was having to do a bone marrow and all we could think about was "Why are we here?" "is this real?"  At times it feels like this should be a nightmare, because really it should be, but then you wake up or a doctor walks in or reality faces that this is all real.  

Please send lots of thoughts Emily's way that the Bone Marrow is clear and that we will be moving forward to Stem cell Transplant come July 18th now. 

Thank you again for everyones love, prayers, and thoughts, they mean so much.  Our family in Massachussetts held a benefit for Emily on Sunday and it was great success, we were able to watch what was going on at the restaurant and somewhat be with them, although we couldn't actually be there with them (there isn't a hospital real close to them in case we should need one) At the end, they called and we were able to watch them as they said a prayer for Emily and us.  It brought tears to both Doug and my faces.  It was really a very special moment and we can't think you all enough for just thinking of sweet Emily during the time and doing something so amazing for our family.  It means so much!!!

Thank you again to everyone.  Love and kiss your kids and hold them tight!

Also please be sure that you guys are following Emily's Facebook Page, I tend to update tid bits of information there when I can do it quickly to let people know how things are going or whats going on when I can't update caringbridge so quickly!!

Fundraiser Today

I know I have some blog posting to do to update you all on things, but life has been busy, but I did want to let you know about an amazing fundraiser that Doug and mine's family is putting on today in the Berkshires.  So, if you have family in Massachussetts, let them know, and have them head on over there!  

Click here to find out more about the event, but here are the details:

Sunday, June 26 @ Chameleon's 12 - 4 pm, Please join us to raise money for Emily’s medical expenses. DJ Teti & DJ Fritz, Food, Raffles, Silent Auctions, Face Painting & Bowey the Clown $20 a ticket includes pasta dinner.

DJ ...Food, Raffles, Silent Auctions, Face Painting & Bowey the Clown FUN FOR ALL

SILENT AUCTION ITEMS
Pulsar Watch doanted from Charland Jewlers
Authentic NFL football signed by Joe Montana
Voucher for 2 to any show at Colonial Theater
2 Six Flags day passes,
Golf for 4 18 holes with cart GEAA
Red Sox/ Rangers Tickets at Fenway in August
Cranwell 1/2 hour golf lesson with director
$100.00 Gift Certificate to Zabians Jewlers
Twlight New moon Saga Movie with autographed pictures from Taylor Lautner and Robert Pattison
2 movie reel canisters from Desperate Housewives and Castle
Framed and matted picture of Stockbridge
Many more items for raffle Gift Certificates to local restaurants and other businesses.

$20.00 donation which includes a pasta dinner.

You may follow her journey or send wishes at:
www.emilyhubbel.com

Here is the address to Chamelons:

1350 east St

Pittsfield, MA

Emily Singing Justin Bieber

Just wanted to share a sweet video Emily singing Justin Bieber, she is so passionate.

Emily is Home

Just a quick update to let you all know that Emily got home yesterday! She is happy to be home after having to get platelets and a blood transfusion bc her hemoglobin was 5.4! The lowest I had ever seen it and platelets 5! 

I wanted to update last night but sheer exhaustion set in from stress, anxiety, scanxiety and just overall things that bother you, we all fell asleep! 

We are happy to have Emily home!

In the Hospital Again

Well I guess the fever didn't want to stay away for Emily.  Friday evening, her temperature was 101.7 under the arm and just before we left to head to the hospital, it was 102.2.  So we woke up Jessie and Brianna who was fighting sleep, so she hadn't gone to sleep yet and we headed on about 1130PM.  Doug and I thought we had this one and we were in the clear of the fever.  We really did.  We knew this time, it was going to land her a visit for the weekend of admission. Emily hates the hospital, and so do we.  We were trying everything in our power to keep her out of the hospital, but to no avail.   It was bound to happen and we knew it would when we left finishing up Round 6 just last week telling everyone we would see them in a few days.  I have to be honest though, I took this admission rather emotionally.  Emily didn't have a temperature when we got here, but because she had a temperature before we left, they had to admit her.  Emily had fallen asleep while we waited for her counts to come back.  When they came back, her WBC was less than .1 like it was in Round 4 and everything else was decreasing also.  Of course this is expected during chemo treatment, but the reality of it just sucks. Emily was admitted and honestly I feared her waking up, because I knew when she did she would be so upset about the stay here.  Well she woke up when we got to the room and she flipped out. Finally I get her calmed down and then the room we were put in wasn't the right one because something was wrong with the bathroom, so she got moved again.  Which meant she got upset again.   Finally got her calmed down and we were off to sleep.

I really hate that she has to deal with this. She has done everything that we have asked her too, taking tubby's every night, being very careful about everything, taking her vitamins every day and the fever still came on.  Something else that Emily has been doing really well at doing, is swishing and taking her glutamin during Roung 6, and awesome news, Emily still doesn't have mouthsores and if she was going to have them, she would have had them by now,  So come transplant, she will be using both Traumeel and Glutamin.  We are so happy to hear about this and not having to worry about that part of it, so this stay here she is eating.

The reality of cancer sucks, we stay pretty positive most of the time and really try to look at all the good things most of the time.  But, we are not always positive.  Its hard to be that way all the time, especially when you are in the hospital and you are sick.   And when you have to be away from home in a hospital, this place where has become our second home, really sucks.  This hospital is just not a hospital where a child would want to come and stay.  Children's Hospital of Richmond, is really not like a Childnen's Hospital and this place has a lot of work.  Ran into a mom today that we see here quite often and she said, "There isn't much to do here huh, besides walk around?"  I said, "No, and it is actually quite boring here. The rooms are small, they are not decorated to appease a child and they are just not Children's Hospital Oriented.

Like I said earlier, this admission was not only hard on Emily emotionally, but also on myself.  Sunday (today) was Fathers Day and I was looking forward to doing somethings for Dougie with the girls.  Father's day was coming and like on Mother's Day Emily was home, and I so wanted that to be the case that Emily be home for her dad and help me make a nice dinner for her dad and do some pretty poses with Emily that we could do a card. It just didn't turn out that way.  I know we can celebrate it next weekend and Dad is fine with that, however it was just another one of those things...Life isn't normal for us..  It possibly could have been the reality of things, however last night at midnight she had a fever of 100.7.  So, blood cultures were drawn again, CBC done and that meant another 24 hours of no fever.  During the day we do well with no fevers, it when nights nears and/or over night. CBC last night still showed less that .1 and everything was still dropping.

These stays get harder and harder, Daddy comes to visit with the girls and goes home at night, no one else visits, and mostly we get texts of "Hows Emily doing?"  These stays are hard on Emily, because she just wants a normal life (whats normal anymore??) but that of staying at home and going to school, but they are also hard on Doug and I. Daddy does a lot of running, since we eat organic of going home and making meals and coming back with meals, keeping the girls at home, keeping up with the house while we are here and just trying to maintain home and all that needs to be done, while I am here with Emily.  Watching Emily fight, we fight with her! She amazes us in how strong she is, and all that she does.   I've found myself to not be much of a phone talker these days (probably months) and a lot of what I feel and think are pushed out on Doug and/or through the blog.  I've come to the realization that my kettle pot is full and it is going to boil over sooner or later, because my fuses are short, I can only handle but so much and my emotions are even more now than they have been in a long time.  I cry so much easier these days.  I try to be strong, I don't like to get upset, because it makes it hard on Doug, and I want to be strong for him to.  Doug thank you for being a rock and for being the person that you are.  Doug and I have been there a lot for each other. We have had the \wooden swingset for a bit now, but there hasn't been time to put it up. Doug really wants to get it up for Emily and the girls, but we aren't home.  Prior to admission he had planned to work on it Saturday, unfortunately that didn't happen and we were here. So, for now it sits..

Emily has had a good day today, no fevers, we have played cards, played with Brianna and Jessie, walked the halls, painted her nails and toenails, played games and eat.   As the night has come, temperatures are starting to go up.  Last was 100.2 and 100.4 is a temperature.  She is supposed to go home tomorrow in the morning if she remains fever free, so please hope that the temp goes back down and WBC and ANC goes back up.

Some other news...we are quite busy coming up with all that is going on.   We have all of Emily's scans coming up, and I saw someone use the word scanxiety, and you know this word is definitly a great word to use, because I definilty can feel the anxiety about the upcoming scans, because I just want to see everything gone.  Clear, NED!   Some of the scans are starting this week.  She has a 24 hour urine test that she is currently doing now to test her kidney function for the Stem Cell Transplant coming.  Stem Cell Transplant is scheduled for July 15th.

Prior to Emily's admission for Stem Cell, we received the best news last week that Emily's Make a Wish to Disney World had been approved and we were scheduled to go on July 6 through the 12th.  I can't tell you how excited we all are about this trip and how we are looking forward to forget about that word "C" that has been so much consumed of our lives and have a good time, is needed.  We are all looking forward to this and Emily is overly excited about it as well.

Happy Father's Day to Emily's wonderful dad.  He would do anything for us and has definitly showed that throughout this.  Doug, we love you very much.

I'm beyond exhausted and heading to work tomorrow morning, so I need to get a little bit of sleep and I know the nurses will be in soon to do a CBC and possibly a blood culture.  And if platelets are still very low, they will need to do a transfusion.  So, I should really try to get some rest now.

Have a good rest of the night and hug and kiss your babies and love them.

Love to all,
Shannon

Almost done at the clinic...Thursday, June 16, 2011

It's been a very long day in the clinic! I'm exhausted and my head is killing me! Emily is sleeping! We have been here since 1030 this morning and talked with Dr Gowda about the evening before and where he felt things were! He checked Emily out and everything looked good!! Still no fever and also looked in mouth and still no mouth sores! So looks like for stem cell we will be using both glutamin and traumeel!  Dr Gowda ordered blood for Emily since her hemoglobin was so low last night, another round of antibiotics and more blood cultures!   Thankfully at this point we are just waiting for the blood transfusion to finish which should be about 530pm and we will put her on some more fluids at home just to keep her hydrated!  Hopefully she stays fever free!

We should be leaving the clinic in about another half hour and then will be off to pick up the girls! And then off to make some dinner and spend some time with the girls!  

Please send your thoughts for a quiet and relaxing weekend with the family and no more fevers! Hug and kiss your babies and love them with all your heart!

Thursday, June 16, 2011

Well we got home at 415 am last night and needless to say we are exhausted! It means no sleep hardly! But last night when we arrived at the ER Emily did not have a temperature! But they went ahead and did blood cultures on both lines and then did a CBC to see where her counts stand at that point! It wasn't until 230 am that we found out her WBC was .1, hemoglobin was 7.4 and platelets were 94. So everything pretty much bottomed out!  They then wanted to keep her overnight which at that point mommy and daddy were not happy and spoke up! Emily didn't have a fever, we had conflicting readings just like we explained upon arrival with no temp while being there the entire time!  I didn't feel it was necessary Emily stay and they worried something could happen to her and I explained if I was worried I would never suggest to take my daughter home unless I truly felt it was necessary!  Finally they were in agreeance but also becAuse Emily has clinic this morning so she would be heading right back! So they gave her a dosage of antibiotics and sent us on our way home!

This morning no fever! All of us are just exhausted!! And heading to clinic shortly to see where she stands!

Thank you so much for all of your love and support last night!

Much love!