Cancer...And All That Comes With It

I tend to forget to update often, and I certainly apologize for not being better at updating.

Emily is doing well and for that we are very happy.  She just finished round 7 of the Avastin/Irenotecan/Temodor trial.  Each round is 28 days.  But she handles each round and chemo really well as long as we keep up with the Zofran.   The Friday before last she had clinic and she needed platelets since they were low, her hemoglobin had dropped also, but not to the threshold.  When she had Day 15 IV Avastin last Wednesday, her platelets and hemoglobin were still low, but thankfully she didn't need any blood products.  Thankfully this chemo doesn't cause her to lose hair,  she is actually having lots of hair growing in.  Its really exciting that she has hair and she is happy that she does too, she is gaining weight.  The weight is awesome, the only negative issues is that it means that medicine doses are increased.  But again Emily handles them pretty well.

Today we are in the clinic getting counts checked and thankfully her hemoglobin has started to come up, but her platelets are 23 so she will require a transfusion. She normally requires Benadryl, but because we have her Claritin with us, we can use that.  She also has to get a steroid called solu medrol which helps with breaking out issues she has had in the past.

Lets not forget that September is "childhood cancer awareness" month, and we are trying to get our Facebook likes up, we are hoping to 8000, so help us out... www.facebook.com/emilysjourney ....

Being that we are gearing up for awareness....Many don't realize the hardship, financial difficulties, stress, fear and worry that childhood cancer treatments that families go through. Families will do anything, travel anywhere to get their child what they need, the treatment they need... Not only is the diagnoses of cancer hard, but the treatment, the longevity of treatment and travel is hard on families, but even harder on the child. Emily is so tired of treatment, and going to the hospital now gets harder and harder, because she doesn't want to be there anymore.  Im sharing this because I think it is important to make people aware of all that Childhood Cancer and what families go through. A family that we follow, recently posted on facebook that her daughter was going through surgery soon and people wanted to know how they could help.  She posted about certain diapers that her daughter uses, and what other things would help them.  While we couldn't really help monetary wise, I emailed the company to see if they could help her.  The company emailed me back and would be able to send them a little something, which is really nice. The financial difficulties makes it hard sometimes for just all the normal things that many take for granted, like with just needing diapers, groceries or simple things and now with school coming up and needing school clothes and school supplies.  So with September coming up and it is "Childhood Cancer Awareness" month and also time when many start school ( Emily will be going to first grade and Jessie 6th grade), lets remember there is more to the awareness of childhood cancer.   I know for us travel is hard, heading to Michigan and the cost the comes a long with it, and while Emily does well, she still knows why we go to Michigan and what is involved in that. But the gas and needing to eat while being out of town, is costly. But remember many don't like to ask for help, we are one of those families, so we know there are many others out there that feel the same. People always ask how they can help, and there are many things that people can do to help others!!! Anyway, But many have so many other difficulties with many other things. Just trying to spread the awareness that comes a long with cancer.

We will continue to keep you updated on Emily and how she is doing! We are really proud of her. We have noticed more as of lately that she gets upset very easily and sometimes they Get out of control. We think a lot of that is treatment related.  Also treatment related, Emily is going to need a lot of dental work. From the chemo, most of her enamel is gone on her baby teeth, and mostly we are more worried about getting any kind of infections and causing fevers. So we are going to be working with hemoc and dental to schedule an appointment and make sure her platelets are up and also to get a dose of antibiotics before going so the bacteria won't cause infections. She has also made comments here and there lately that she feels like she can't hear things as well, hopefully it is nothing, but we will see.... haven't had a hearing test in a while. So we will probably need to do that sometime coming up. It sucks what chemo can do and what some of the long term effects that it can cause.

Remember to hug and kiss your children and tell them how much you love them!!!

1 Week before Philly

Thank you so much Amazing Hats and Sue for the beautiful hat

Its Monday evening, and I just wanted to update...first Facebook updates:

February 12: Tomorrow Emily has clinic. We are thinking that her hemoglobin is low because she has had a lot more downs than ups the past two days. Just very low energy and tired and clingy to mommy!

We also have 1 week from today before we head to Philly and we prepare for a week of scans, with surgery to remove hickman line and replace it with the port and also a bone marrow biopsy.

February 13 @ 1230PM: Emily is still here at the clinic saying she is tired! It will be a long day here because Emily needs a blood transfusion! Platelets went to 59, small increase but better than decrease! ANC is still a little low but ok! Have a good day!

February 13 @ 8PM: Emily received her "super blood" (blood transfusion) and has much more energy! It was a long day at the clinic. Emily has been complaining of pain here and there, but we are hoping it is nothing!


Over the weekend, Emily had a lot of ups and downs and she was pale a lot over the weekend. We could really tell Saturday night, that she just wasn't normal, so we figured her hemoglobin must have been low. We thought we might be taking her to the ER to get a transfusion if it has gotten any worse.

Sunday afternoon Emily complained that her knee/leg hurt were she has tumor and of course Doug and I both worried. Tonight she has complained that her right hip hurts. Again both Doug and I worry, but scans are a week away from tomorrow. Our hopes of course is that it is nothing. But as a cancer parent each body pain is scary.

Yesterday I received an email from another family whose daughter has NB where they had received an email about a family whose son was diagnosed with Neuroblastoma here not far from us and if people wanted to send post cards (I am keeping this information confidential because I don't want to spread information about a family unless they would like their information out there). Doug and I were able to locate them and contacted them just to let them know that we too are a NB Family and we are here should they need anything at all, their son was at our home hospital. While I didn't hear back from them, both Doug and I thought a lot about them.

Emily had clinic this morning to have her counts checked and her thyroid levels. As we suspected, Emily did need hemoglobin, because it was low. Her platelets went up by 4 to 59, while it was a small increase it was still so much better than a decrease and ANC went up a little bit, but still low.

We knew the family was at the hospital, however we didn't know if they had left yet, Doug thought I should stop by and introduce myself and just let them know again that we are there should they need anything. I will be honest I tried to find any reason that I could to talk myself out of it, mostly because I was nervous...I was nervous knowing how overwhelmed that they would be with their son just being diagnosed of this fearful disease, being shy about meeting someone new, and then walking back on the 7th floor of the hospital where we have not been since June of 2011. Thanks to my husband, it was a nice gesture to introduce myself and afterwards I felt better letting a family know we are there to help when being introduced into a world of the unknown. The world of cancer is scary and there are so many unknowns. I walked onto the floor and the fear I was worried about, my nerves and everything that we had gone through on this floor overcame me, but I didn't turn around. My husband was right...while we didn't have anyone immediately to talk to about NB, eventually we did and even had texting friends that were there anytime of the day and they were amazing and very helpful, and I knew it would be helpful for them. I also knew if they didn't want to talk, that they would have asked us to leave the small gift and we would have been ok with that. The security people had not changed and they remembered me and said go ahead mom, and I had to let them know I don't have a child on the floor, I am here to visit another child, she was confused and of course I explained. Dad came out and I introduced myself nervous and the pain and fear was in dad's eyes, I could see it and the reality of what I was nervous about hit, everything that they were going through just hit me and were flashing in my head when Emily was diagnosed. Dad took me back to meet his wife, and happily I could see that they were getting ready to leave (for home after 11 days of being in a hospital hearing all the things that they never wanted to hear), but I did talk with mom for a little bit. Mom too, I could see the fear, the pain in her eyes for their son, all of everything that I remember Doug and I going through 14 months ago, which all of the sudden seemed like yesterday. Doug and I sat on that same floor for 12 days and heard those same words that they heard, it all flashed before me. For parents who never cried before, they cried before with fear and worry about their child and all of this flashed before me as I was walking back through that hallway. I was strong, because they were receptive to my coming, and I held myself together knowing that they needed me too. I saw the nurses, again most of them were the same, that were there before, nothing had changed except for other families (newly diagnosed or those I have never seen before) going through the same things that we had gone through and the fear and worry about their children. I was happy that Doug pushed me to do this, because at the end of the day, it was the right thing to do. Mom was receptive to my coming as I explained to her that I was really nervous and thought this might be too much for them, but she was glad that I was there and that she knew she would have lots of questions and asked a few while I was there. I saw their sweet little son and I just wanted to hold him as he was crying wanting his mommy (just because I remember our sweet Emily being this way), he was beautiful in all ways and all I wanted to do was say that I'm sorry and sorry doesn't even touch what they were/are and will be going through, or what we are going through or what any other cancer parent is going through. Mom and Dad I just want you to know that Doug and I there for you to help you in any way that we can, to answer any questions that you have, we are here 24/7, please don't ever hesitate.

After leaving the 7th floor and getting into my van, I broke down. I broke down because I was glad that I had stopped by to introduce myself and just to let them know we were there, but also because everything that flashed in front of me. Again in the long run it felt good to be available to a family going through the unknown and going home today after 11 days thinking when they went in they wouldn't be there long and everything was ok.

Please be aware that families go through this everyday and oncologists are telling parents their worst nightmares several times a day, are you aware??. Today was a day that I needed, needed to get out there (and be more open then hiding behind a computer when we want to "give back" and honestly I feel that Doug and I were able to "give back" today!

Emily received her blood transfusion, and was a totally different kid, she got super blood and she had so much energy. During clinic she also had her thyroid levels checked since the MIBG treatment can cause a lot of thyroid problems. I called to see if the results were in after Emily was already gone and Elaine called back to update she said one of the levels were a little bit higher than it should be and the other was normal. She was going to check with Dr. Gowda to see if there was anything that needed to be done or just to keep a watch on it. So this will be one more thing to add to the list of worries, but we won't worry too much. We will send an email to CHOP just to have them be aware and if they think we need to do anything different.

The pains that Emily has complained about here and there have us concerned, but we have to hold up hope that it is nothing and just those things that every child deals with or just something else so simple. We do leave Sunday to head to Philly! Scanxiety has surely started if not already been there with the pending scans coming up. CHOP doesn't have any plans for trials for Emily yet, we were told... "We will need to take things one step at a time in order to decide what is the next best step for Emily. Emily's next disease evaluation is a couple of weeks away and we will need to use all of the information we have at that time to make recommendations." (this was from a few weeks ago). So all we know is all the trials that we have read and what Sholler said that she could do for us, so we are waiting to see what CHOP can do for us and our sweet Emily. Platelets are no longer an issue, so we don't want to hit anymore roadblocks, we just want something that will help Emily! So the pending scans have us both a bit a nervous about what they will show and how we will move forward. February 24th, while we are in Philly, we will also be celebrating 5 years of marriage. Anything that we have to do for Emily we will do, ANYTHING, ANYWHERE!

Update: I am still working on getting together care packages (bags for newly diagnosed families containing things like deodorant, shampoo and conditioner, razors, lotion, toothbrushes and toothpaste, hand sanitizer among other things to help those newly diagnosed families in the hospital) and they are coming along nicely! The stash is growing and we are excited to be "giving back"! The coupons that people are sending from all over the place, are so helpful and continue to be of huge help, so please keep them coming! Like I said the stash is coming along and I think when we come back from Philly we will be able to start working on those bags to take up to VCU for the social workers to give to newly diagnosed families.

Update #2: We have people asking where to make donations since some fundraisers are getting in the motion and I just wanted to update everyone and let them know how they could make donations and where:
Emily has accounts in her names at:
--Dominion Credit Union
--Wells Fargo Bank
--First Citizen Bank
****Donations may be made at any of those locations by giving Emily Hubbel's name and they will make sure the rest is taken care of.
--Through the website at www.emilyhubbel.com
--Mailing to PO Box 5383, Midlothian, VA 23112 where gas cards can be sent as well (which is definitely very helpful with the traveling)

Make sure you hug and kiss your kids each night and tell them how much you love them! Good Night!

Check out Channel 8 News Tonight

If you are in the local Richmond, VA area, make sure you check out Channel 8 News, WRIC on http://www.wric.com,  tonight at 11pm EST, Veronica from Channel 8 came to our house tonight to talk about the Cancer Barbie Doll and to raise the awareness of childhood cancer.  Make sure you are watching it.  For those that are not local, we will get a link and post it once we have it.  Share and spread the awareness.

Also, on Sunday I posted on Facebook...I need a huge favor...today I decided that I would like to make bags for new diagnosed families that contain needs like shampoo, soaps, wipes, deodorants, toothbrushes and other things! If you would like to send things that can be a part of this bag that would be great! However what I am really looking for is coupons to get these things! I can get them free by working the coupons out at places in the area! Having these for new diagnosed families helps when families have inpatient stays and things you just tend to forget! If you could mail your coupons you don't use to 

PO Box 5383

Midlothian, VA 23112! 

This is our start to giving back and in the future we are hoping to do more and can't wait.!

I will post the link and update caringbridge and our blog later tonight. 

Day +7-9, Stem Cell #2

Today, Mass General had a meeting to review Emily's scans.  We don't know the status of the review, but we do know they were meeting as a team today to review and then next week they will review with a conference what they concluded from those scans.  According to the secretary from Mass General in the Proton area, she indicated we would hear something mid week of next week.  We also understand that MD Anderson will be reviewing Emily's scan early next week, however we have not heard anything from them.  We are anxious to hear the status so that we can move forward and at least know what we are doing.   We are anxious to hear the status because we have heard that Mass General is Top Notch hospital and we have done our research, and then when Dr. Allen Thornton from Hampton University Proton Therapy Institute referred us to them since they would not be ready for children, we knew it was the best place. A friend of mine, Rachel, whose son, Ethan (his caringbridge page),  is currently in remission from Neuroblastoma, thought I ought to check with our health insurance to see if they offer a travel and lodging policy.  She said that theirs did and it was really helpful. All I could do was try and see what would happen. The first woman I spoke to told me she would call me back before the end of the day since she wasn't really sure, and since I didn't hear anything, I called back later and the woman that answered the phone actually laughed at me and asked if I knew I was calling my health insurance provider. Um yes, I am aware that I am calling my health insurance provider. Anyway, I called back again and spoke to another woman who was really nice and indicated that it wasn't something available under our insurance, like I said before it was worth a try to see what they have for people who are undergoing treatment and have to travel.  Radiation is the next part of Emily's journey after stem cell transplant.  She will have to be sedated every day and since she is a child they are normally up first which is thankful because when you have to be sedated, you can't eat after a certain time.

Its been really busy the past few week here with Emily!  Thankfully she has been fever free for almost 2 days now, however the pain has not gone away!    2 days ago, because of the pain, the Hem Onc doctor wanted to get a CT scan of her chest and abdomen.  Per the review of the CT scan, the scan is still 100% gone and only shows calification and shows some haziness in her chest area. The haziness in her chest was of concern for the doctor because she worried it could be the early start of pneumonia.   The CT scan in her abdomen showed she has minor colitis which is causing much of her pain.   Later that evening the pulmonary specialist came in and reviewed her scans and at this time that it was not pneumonia, but that one of Emily's antibiotics were changed to something a bit stronger to help with that and that they would continue to look and make sure she was not getting pneumonia. Thankfully at this time she does not have pneumonia, but the pain in her stomach is still pretty painful.  She screams out in pain.  At night she has been on TPN and while on the TPN she has been throwing up 3-4 times a night which accompanies diarreah most often.  A few of the times she has been throwing up a lot of blood which one of those times she had to get Platelets because she lost so much blood.   The doctor didn't visit yesterday so we didn't get to ask any questions or find out more about the throwing up while on the TPN.  She did come in today and was concerned that Emily still had a lot of pain in her stomach.  She said she was thinking of having them do another x-ray, but that it probably wouldn't be today. She did decide to stop oral medicines for right now because when we gave Emily her dissolvable pill and ursodial, she threw up hard.  Dad was here when she did this and I was downstairs eating, but she screamed out in pain and threw up a lot of blood not too long after.  She doesn't want to do a lot of walking around which is when we are noticing when is crying out more. Another x-ray was done and the x-ray showed a lot of air in her intestine.  Later after the radiologist reviewed the scan and the doctor called the nurses to let us know, everything was cleared up and she only has the air in her intestines and really needs to walk to get that out.  That is great news, yes, but only if we could just get her to walk.  She doesn't want to walk, because it is either she is too tired or her stomach hurts.  The PCA pump is still being used.  Tonight they changed her TPN to start at midnight to see if she still throws up like she has been doing the nights before.  Because Emily has had so much diarrhea she has had potassium transfusions daily. 2 days ago, Emily had to get lasix (which you all know I am not a fan of) but Emily was swollen in her fingers and her face, so to get the fluids out, they had to give her lasix and that night after receiving it she urinated more fluids than fluids she received.  This morning she was pretty swollen and up 2.5 lbs from admission, however throughout the day she seemed to lose those pounds and would not need to receive lasix today. Thank goodness.  

Tonight Emily's counts came back and her White blood count is .5.  Yes, that is right .5.  Hell yea, ready for that nasty mucositis to go away and Emily to come back. I hope that this will take care of her nasty pain in her stomach.  I miss her, I miss seeing her running around and playing. So, lets hope that the nasty stomach pain will go away soon!  Seriously!! This road here has been long and we so thought that Stem Cell #2 was going to be a lot easier, and honestly it really wasn't, in terms of pain for Emily, this was a lot harder.   Monday Brianna will be 2 years old on September 26, hard to believe, but she will be. We are just all ready for us to be home together.  Doug will be celebrating his birthday on October 2nd and Jessie will be celebrating her on October 3rd, so we have a lot of birthdays coming up.  We are looking forward to having one big celebration when Emily gets out that she will be able to take part of. 

I felt like tonight was a repeat of last transplant when we were here.  She was sleeping and woke up and her nose was running (or so she thought and it didn't drip on my arm like it did last time) but her nose was bleeding.  After holding her nose to get it to stop, she then started throwing up a lot of blood.  So, she needed platelets to  help stop the bleeding and will also need a blood transfusion about 6 AM.  Hopefully tomorrow will be a happier and brighter day, and Emily will be feeling better and saying less of her tummy hurting.  This is my hope..  It already almost 3 AM, and I am going to work for part of the day while Dad comes and stays with Emily for a little while. 

This has been a long road, and I swear this road only feels like it gets longer and longer and I don't feel there is a road ending anytime soon, I just keeping looking for that final destination, and we just haven't reached it yet.  Will we ever?  No! .   As of late, I don't feel that my head is all there, and I honestly just feel lost at times and sometimes in the middle of talking, I find myself lost and can't find the simplest words, its like I just can't remember.  I find that I don't remember things that I used to remember so easily.  Doug and I are both feeling like this!  

I want to reach out to all of our supporters, we wouldn't be where we are today without you all.  We read each comment that is left onCaringbridge, Emily's Website and Emily's facebook and each one means something to us.  It is amazing the amount of support that has been out there for us and we wouldn't be where we are today without you all.  We have met some amazing people, organizations and other families going through what we are going through and I am thankful to each of them.  We are thankful to our wonderful families, who are there and they mean so much to us.  Thankful for our community of people from work, mommy's board and just the love from people we don't even know. Thank you for the cards being sent to Emily from all around the world from people we don't even know.  Each card is read.  We will be placing all of these in a very special box so that when she gets older she can read all of these cards and know how many people out there loved her and how many lives she  has touched, because I know it has been many.  We are thankful for the packages of gifts that are sent to Emily, because she gets excited with each of them.  I can't tell you all how much it means to our family.  Emily loves mail and Dad is so excited for when she gets out of the hospital that he will give her a key to the PO Box so that she can open her box and get her mail.  The love that is out there is just amazing, and we thank you all so much all over the world.  !!!

Well, I must head to sleep so that I can wake in the early morning!  Good night!  Continue to leave lots of love and care for our sweet angel.

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Its Childhood Cancer Awareness Month:

The past few weeks I have watched Emily go from running down the halls to laying in the bed. We have wiped the saliva from her mouth because she won't swallow, to changing her clothes & linens 6-7 times a day because of the diarrhea accidents from the chemo, to hearing her cry/scream of the pain she feels in her stomach from the esophagus, to pressing the pain pump to control the pain, watching her throw up blood, bloody noses or others. Emily has had to get blood, platelets, magnesium, potassium, calcium & many other transfusions because of all her body is going through, she hasn't eaten in 8 days. This is the life that we live with Emily and I wouldn't want to be anywhere else, but its hard. Its childhood cancer awareness month, are you aware? If you aren't, do something to make yourself aware, spread the awareness.

September is Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month, are you aware? Please share this video done by Stormy and Savannah, sharing awareness of children who are fighting or are survivors:

Check it out here