Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Tuesday, February 14, 2012

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!

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