Surgery Update

Emily went back about 845AM and surgery started at 950 AM, at this point we are just waiting.


Please continue to send all your love and thoughts. Dad and I are both beside ourselves. Just wanting the time to pass quickly so we can see her.

Mom

Wednesday, May 25, 2011 (day before surgery)

Mondays visit to CHOP was comforting to Doug and I...meaning we definitely feel like we made the right decision on taking Emily to Dr Mattei! We arrived late a little worried that we would have missed him since he was flying out, but he was still there! We were able to meet with him and he walk us through the surgery! He seems to feel confident that he can remove all of the tumor and while there he will look at the lymph nodes as well just to make sure that there isn't anything there. He did state he was 99% sure he would be removing the adrenal gland because most oncologists want it gone so there is hopefully not a chance of relapsing! We also met with the anesthesia area and the nurse practitioner came to meet with us and go over questions that they had and questions we had! Then we went to the oncology department to get Emilys counts checked! By time we finished all that it was 430pm! We all still needed to eat, so afterwards off to Whole Foods! Obviously after that it was a long ride back to Virginia! Brianna came with us so it was a bit overwhelming because she was fussy here and there but overall Doug and I feel like we have made the right decision on taking Emily to CHOP for surgery!

Yesterday we prepared for getting ready for our trip to Philly! We checked with Ronald McDonald house and were told we would need to call about 10am to see if they would have any rooms for us to stay in! That makes it hard because we were already debating on if we should bring the camper! There was so much that needed to be done , I was able to prep a few meals, make dinner, wash clothes and start packing!  Doug and I have been exhausted, so exhausted mentally, physically and emotional! The past few nights we have just passed out! Last night we were laying down in the living room and fell asleep until 630 this morning!

Today and right now we are heading to the Ronald McDonald house to stay the night and then be at the hospital at 715 am for surgery!  We are both nervous and anxious about the next day ahead of us but also ready to get this part of this protocol over!  We are very thankful to my dad who is taking care of Brianna until Saturday for us and for Regina who is going to meet us at tonight and be there for us for surgery to support us! It really means a lot to us! 

Doug and I are asking that you send lots of love and thoughts our way and be thinking of Emily during this time! It really means a lot to us! I will try to update tomorrow once Emily is doing well! 

Remember to love and kiss your children as often as possible!

Monday, May 23, 2011

This will be the 3rd time trying to get this entry in hopefully I won't accidentily hit the cancel button again.

Friday morning Emily had count checks at the clinic! It was great to see her counts went from .3 to 1.6 WBC and she was just a little but greater than 1000 for her ANC! So Dr Gowda okayed her for surgery!

This past weekend we enjoyed the weekend away...away from our house and away from the hospital in our camper at a campground! We headed to VA Beach after work to take some time away from our new "normalcy" and just have a good time! So we let the girls ride bikes, play ball and just have fun! It was different to go camping and the pool now be open and we didn't get in the pool. However no one made mention of it! We drove the golf cart around the campground and looked at campers and just had a good time! Saturday night we took the girls over to the gameroom to play some games and right outside the door of the gameroom they had a DJ and a party for all the campers! Emily was having a great time playing games, dancing and smiling and it was great to see her smile! Jessie and Brianna were having a good time as well so it was nice to get that time away! Emily even talked to auntie Tricia and uncle Glenn on the phone, which it has been a while since she has done that! We were thankful for that bit of time together as a family away from hospital!

Today we are back to reality away from camping and driving to CHOP! Emily has pre-op today and we have done nothing but hit traffic along the way which means we will be late! I have called the nurse to see if we can move the appointment to a couple hours later but I haven't heard back at this time! Today is a day that we prepare for what is to come with surgery and I can't say that I or Doug is not nervous about it but we also want to get this part done and over with! It's also something that we haven't told Emily about because all it will do is get her scared and cry! She is done with all of this and so are we...but we also want to get all of this out and hope that it never comes back!

We want to continue to thank our amazing community and family and friends who walk along with us! Thanks to Melissa for working on the auction online on facebook so that we can have a swingset for the girls, thankful to friends who do things to help and thankful to organic meals that are brought from time to time and thankful to family in Massachusetts who is working on a fundraiser in Doug's hometown! It is amazing how family and friends pickup to help during a time like this and we can't say thank you enough, but it does mean a lot to us! So a huge thank you!

Well I made it through what I wanted to get out...my hope is to update more tonight after we meet with Dr. Mattei and get the answers to what is to come and after we make the haul back from Philly!

Friday, May 20, 2011

This past visit to the hospital was probably our shortest visit that we have ever had, which was nice, however it would have been nice had we not even had to stay at all.  Tuesday I went to work and when I got back to the hospital, Emily has spiked another fever after having gone over 24 hours of not having a fever. We thought we were in the clear and would be able to go home right after the CT scan at 1230 on Wednesday, but she spiked to 101.6 at 8PM, so they did blood cultures, urine cultures and another CBC to see where her counts where. Tuesday evening her WBC was 2000 (.2) and her hemoglobin was 6.8.  So, Dr Massey got called at home and she wanted Emily to get a blood transfusion which started around midnight. Emily didn't have another fever over night.  She woke very early Wednesday morning and of course she had been MPO'd (which means no foods after a certain time) and was starving at 5 AM.   I was able to hold her until about 630 AM and then she just let loose.  It was a very long morning because she cried about everything, but most of it stemmed from not being able to eat and she was starving and wanted to eat "NOW".  There was nothing that I could do to calm her, so she used her lungs, her legs, her arms to say how she felt.  Needless to say it was a long 5 hours until it was time for the CT scan and honestly nothing I did could get her mind off of eating.  However she gave me about an hour for us to watch Justin Bieber and talk about how much of a hunk he is and his heiny, she laughed for about an hour and then after that, she started again.  This time asking for home, wanting to eat chicken nuggets, I want to go home, I don't want to do the scan and just in general irritated.They were nothing that I could do to calm her, so we ended up having to get her benadryl and while I didn't like doing that, she was screaming bloody murder and her scream could be heard all through the halls....all I wanted to do was to hold her and tell her I was sorry I couldn't let her eat and sorry she had to be put through this hell in general, but nothing worked not evening the lovings and hugs.  I felt so bad and yet she had every right to get upset about not being able to eat.  She has lost weight from the chemo, she had every right to get upset, because she needs to eat.

We did get the CT scan done, and then had a another CBC and Emilys WBC was 3000 (.3), hemoglobin was going up, but platelets went down again.  So, she had to get another transfusion of platelets and after that she would need another dose of antibiotic and then she would be set to go home, as long as no fever.  Emily went home around 7PM, she was so happy to go home.

Plans moving forward, 

Friday Emily has a count check to see how her counts are.  

Weekend, We are taking the girls camping to Va Beach for the weekend for some time away from hospital, time away from choas and just to enjoy to be with family and have a good time.  

Monday, Emily has a Pre-op appointment at CHOP at 1015 and to talk about whats going on, what to expect, where to go and all of that.  We will drive up and then drive back later that night. 

We are not sure if leaving Tuesday night or Wednesday night, but...

Thursday, Emily has surgery.  

I'm not looking forward to the surgery and the birthday of where she will be in the hospital, but we will celebrate a wonderful Happy Birthday when we get back.  Please make sure if you know Emily, don't talk about her birthday face to face on her birthday, just because we don't want her to get upset about it.  She won't know that May 30th isn't May 30th, which means any day could be May 30th based on what we tell her.  We just want her to enjoy her day whenever we are able to celebrate it.  Our hope is still to have the Playset up for her, she will be so excited.

Well, it is after 2AM and I have to work in the AM and then Emily's appt, so I'm exhausted, its bed time.  Got a lot on my mind with processes moving forward, but I think all of that is just normal.

There is an auction going on over on facebook -- Funds for Emily Hubbel, just like the page and check out the auction photos that have been posted. Auctions have started already and it will end May 23rd, so hurry over, for a great cause!!. If you are interested in donating an item, please contact fundsforemily@gmail.com, still accepting items.  Check out theAuction here

Monday, May 16th update

I'm trying to look at the positive side of things but it is hard to when all I want to do is be a big baby and lay on the floor and scream, kick, punch someone or something because we just found out she is being admitted! When we got here her fever had gone down to 101.6 and the doctor noticed her left ear was red! It was our thought that she might have an ear infection and that be the culprit! But can't say for sure because her WBC is 1000 (.1) not yet able to register a ANC! This means she won't be ready for surgery this week!  My heart aches as this morning she was crying no fever I don't want to stay at the hospital! It's like being on eggshells shhhh don't say upstairs she may hear! Again o fear it will be benedryl again! 

Right now we wait for platelets because they were 7000 (.7) so she needs to get a transfusion! Then she will be admitted to a room and get another dose of antibiotics! She has received one here in clinic! Let's hope that this fever breaks and she will only be here for a few days!

Now the part that kills me is knowing next weekend is a holiday weekend and Emilys birthday on may 30th! Emily will now be scheduled for surgery on may 26th it sounds like! Which means she will be in hospital on her birthday! Several things suck for that.... Her wooden swingset will not be up and the birthday party for 4 gets old will not happen! I'm trying to be strong and hold together but it's hard to! Where is the wall that I can put a hole in, where is the tissue I want to cry in and Emily will not see! I know that things could be worse but this is hard on us!  Sorry for being upset but this is hard, hard on us, hard on Emily!

Will keep it updated on what's going on! They dis blood coultures also so those take 24 to 48 hours! Please send hood vibes for short time here, good vibes that dad and I hold it together and good vibes that Emilys counts rise quickly!

Monday, May 16, 2011

Today we sit in the clinic earlier than expected because Emilys appointment was not until 1030 am! Woke up this morning and Emily was burning up! Took her temperature and it was 103! I woke Doug up to show him and he saw it too! So we got the girls ready, gave Emily a luke warm tubby and the temperature went down! Emily was screaming no fever I don't want to stay there! No fever!! 

So we got here to clinic and instead of being in the fishbowl we are in a room away from others! They checked her temp and it was 101.6!!!! My second thought for this morning Fxxx!  Yeah that is what I am thinking! We have been so careful, Emily has gone no where since she was released from the hospital on the 6th except here...no where! So Emily is asleep on my lap while i wrote this here waiting for counts to come back! My hope is that her WBC and ANC are up and they put her on an antibiotic and send her on her merry way! Because if not she will have another scene which will cause benedryl again and I dont want to be there! 

So please send your positive thoughts that all is good! 

Friday, May 13, 2011

Its been a while since my last update here, but just a lot happening and just trying to keep up with day to day!

Doug and I used to feel that we were both normal people, normal parents, normal laid back people that were leading normal lives. We, Doug and Shannon, met and we fell in love with each other and decided to get married, like normal people do and have children together like normal people do.  Both Emily and Brianna were early (Emily being 5 weeks early and Brianna being 6 weeks early), but both were very healthy and loving girls.   People who see us walking down the street, see us out in the world anywhere, stop by the house, we appear to be just like normal people that lead normal lives, but until you take a walk inside of our lives, our minds, our world... or unless you know us personally, you know the Hubbel House doesn’t live a normal life.  Back on December 23, 2010, that day changed our lives forever from being normal.   We aren’t happy with what we have been handed, but we will deal with it the best way we know how and as well as to be expected.  We are overwhelmed with all that is coming our way and what gets thrown at us on a day to day basis, we are stressed with knowing what we know, we are scared of anything and everything that could happen, will happen and may happen.  We are both hurting terribly and worried sick about what our daughter has had to endure and what she has coming up to deal with.   Everyday that I am able to work, I worry that my phone will rang and that Emily will have a fever and we will have to go and get her to take her to this hospital.  Sorry for the little vent here, but Doug and I both are having a very hard time with this and just trying to grasp what is going on in our lives and what Emily's sisters have to deal and overall what Emily has to deal with. We just wish that we could go back to our normal life that we once had and enjoy time non cancer. I know that it will never be that way again, because we will worry for the rest of our lives, we will be anal about germs and who comes around our children and our house, its just something that is now part of us that now we have to learn to deal with.  We read along with so many journey's of other families who are also dealing with this and feel the ups and downs that they do, and its just scary to know how horrible this disease is.  Its wrong that 4 that we know of have lost their lives to this disease within the last 4 weeks, I'm sorry but I can't understand why a child has to be put through that, it isn't fair and isn't fair that a parent has to lose their child.  I can't sit here and lie and say that Doug and I have never thought about that, because again I would be lying, it scares the crap out of us, but it is reality of this disease, however we know that Emily is strong and she will beat this.  She will beat them and show them who wears the pants in this house and that she can win. Doug and I both say, we HATE CANCER.  Hate is a strong word, and hate isn't a word that we use in this house, but we use it when it comes to cancer.  We honestly don't even like to say cancer, because those words, just seem ... seem ...  a word that I can't put into a sentence...

This week at home with Emily has been nice to be at home and no interruptions of a fever (knock on wood) so far to take her back in the hospital.   Emily was feeling pretty lousy upon getting home, still exhausted and sleeping most of the day and getting up a few times to get sick, however nothing like round 3.  Mothers Day she did have a few more ups but still overall was exhausted, by Monday she was somewhat getting back to herself except for the eating and drinking.  We had her on fluids over the weekend and requested to have them a few more days because of her not eating and drinking a lot.  By Thursday we had a meeting with Dr. Goddar and after the meeting, her energy had diminished big time and all she wanted to do was to sleep again.  All day Friday she slept and was up here and there.  We did ask for fluids again for 3 days because she is still not eating and just seeing her exhausted, we know she needs to eat to get some energy and gain some weight. Even the babysitter can see that she needs to gain some weight, but we are trying. 

Tonight we got the movie "Never Say Never" with Justin Bieber and was hopeful that Emily would have enough energy to watch it and maybe even have some popcorn.  After Brianna went down to bed, Emily was asleep and I went to get her and bring her in the kitchen to start her fluids for the night and she said, "I want popcorn" and was ready to watch Justin Bieber.  She tried to stay up for the most of it, and it was great to see her watch it and even sing some in a very light tone.

We got word from CHOP that they could schedule surgery on Monday, May 16^th, but we were not so sure that she would make those counts being that it would only be a week off from Round 5 chemo.  We knew would we find out when we took her in on Thursday to meet with Goddar about Stem Cell Transplant talk. So we tentatively had then put in on the schedule, so we could leave over the weekend.  However, Emily's counts had other plans, which is what we thought would happen, that they would be too low to move forward.   As we had guessed, they were too low to move forward to leave over the weekend.   Dr. Gowda felt that her counts may even bottom out more over the weekend.  So, now we sit and wait and see what happens when we take her back  on Monday to have her counts checked. 

Since her counts are still low, we lay low and enjoy time together as a family and stay away from the germs...just to help you all see what we try to keep Emily away from, here are some precautions:

Steps to help prevent infection when neutropenic (low counts):

• Hand washing, hand washing, hand washing! This includes the patient and those around the patient.
• Avoid large crowds where you may come into contact with germs, such as shopping malls, church, or public transportation. If need be, go at off peak hours to avoid the crowds.
• Avoid anyone who is sick (including colds), including other people in their household are sick.
• Avoid children or adults who have recently received vaccines.
• If you have a central catheter (PICC, Port, Hickman), use caution to keep it clean and dry. Check the area for redness or tenderness (soreness) daily.
• Follow an oral care regimen.
• Wear sunscreen (SPF 15 or higher) to prevent sunburn.
• Use only electric razors to prevent cuts.
• Use caution to avoid any cuts or injuries. (avoid contact sports, wear gloves for household chores)
• Do not use rectal suppositories.
• Do not eat raw or fresh vegetables
• Stay away from constructions sites
• Stay clear of flowers which have fungus
• Take a bath daily to rid of germs on your body
• (There are many more, but here are just a major few)

Well, I'm exhausted, so love to you all, kiss your kids, hold them tight and tell them you love them.  Remember don't complain about the small things, enjoy life because things can change so easily!  

Good Night.