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!

Week 2 Post MIBG Therapy of Round 2

Emily opening her package from Sue with a Justin Bieber Notebook! 

Two weeks have passed since Round 2 of MIBG Therapy.  We have 3 weeks left before we head back to Philly and see how this Therapy did for Emily. And yes, I am counting down, counting down because of the fear of what it will bring or that we learn.  Last time we had 6 weeks, but this time they scheduled her re-evaluation scans at 5 weeks. 

As you recall Emily had her stem cells given back to her last Monday, which this leaves her with 3 bags of stem cells left, Thursday she had clinic and needed both platelets and red blood because they were both low.  Her ANC and WBC dropped again, so still being very careful of her not getting sick.  Doug was sick for a few days, so he actually slept on the couch not to get Emily sick. However since being home from Philly this time, Emily just hasn't been herself.  She seems very tired often so much easier, she isn't eating much (where we have started the periactin again since she isn't eating much and her weight is down), and honestly just not herself.  Some days she has been very quiet, not saying much but been very whiney and she has had a few days where she has been saying her stomach hurts (which has gone away after giving her some zofran). Monday, Jan 30th will mark 7 days from when she received her stem cells back, so we should start to see them working within 10 to 14 days.

The past 2 weeks since we have been home have been really hard. Hard because we have a lot of questions, so we have been asking a lot of questions to our onc here at VCU, reading a lot anything and everything, and hearing a lot of children passing and honestly we are scared.  Scared about all of this and what it all means. Last night Doug couldn't sleep, and he was up all night reading and reading, he couldn't stop. He is again reading tonight while I am updating.

Thursday we did speak with Dr. Sholler from Michigan via phone conference, she is one amazing women and knows her stuff. Dr. Sholler told us yes we have some options, but only if Emily's platelets are at 50 or above, meaning they have to recover.  If they are not, we won't have any options anywhere, so we are very hopeful that we start to see her platelets recovering soon..  She says since Emily has never had a bone marrow issue, then her platelets and hemoglobin should recover on their own.  However, when we go back to Philly on the 20th, Emily will have her bone marrow checked again, since her last one was in November. Dr. Sholler has told us what she has available right now, but before we get too ahead of ourselves, she wants to see Emily's scans, so we will send those out to her over-nighted tomorrow.  We may be taking a trip to talk with her, but we will wait to see what comes out of her looking at Emily's scans. We are trying to stay ahead of the game and just know what we have available.  

Overall, we are all home together and enjoying our time together. However this time home compared to the last time, it so much different because our minds are not where they were before.  Right now we are just trying to keep our head above water.  Its scary, we are seeing CANCER everywhere out in the community, what is coming to this world.  We really need some awareness for Childhood Cancer and the awareness.of Neuroblastoma. To keep this post from going array, I will leave it here...but make sure you hug and kiss your kids and tell them how much you love them.

Update on somethings going on right now...

--Love For Emily Fundraiser, continued until Feb 24th. Check out www.emilyhubbel.com to learn about Emily. Click this link to help out if you wish/can.

--will have more information for some fundraisers that are being worked out right now.

--We are working a project ourselves going on right now...we are collecting (not expired) coupons for items such as; shampoo, conditioner, chapstick, deodorant (men and women), toilet paper, tissue, hand sanitizer, razors, shaving cream (men and women), womens needs and many other things.  Since we don't have the money either, but we really want to be able to give back and pay it forward, so we are using these coupons to work out the deals at several different stores to get these items for free to make bags for newly diagnosed families at the Children's Hospital of Richmond.  My sister in law, Tricia, is getting some Team Emily bags made and once we have enough to make at least 30 bags, I will be teaming up with Connor's Hero's who makes bags with different items in them for families as well. If you are interested in helping out with this cause, you can send your stuff to PO Box 5383, Midlothian, VA 23112.  

Beautiful and Bald Barbie and Week 1 Post MIBG Therapy Round 2

Beautiful and Bald...Emily is a princess, beautiful no matter how you look at her, with long blond hair or without.  So to us this Beautiful and Bald Barbie, it doesn't matter either way if Mattel makes the Barbie. However what matters to us is Childhood Cancer Awareness. and what better way to have Mattel a big company promote Childhood Cancer Awareness with a Beautiful and Bald Barbie. 

Wednesday night we met with Channel 8 news to do an interview about the Barbie.  Emily was too shy to get on camera, so it was just Doug and I. The interview was about an hour long and the clip was about a minute long. Check it out on Channel 8 News.  It turned out well, and it really got out the points that mattered.  It was a great start to The Hubbel's promoting Childhood Cancer Awareness and making people aware of Childhood Cancer and of our daughter. 

Thursday night Grey's Anatomy had a case of an inoperable neuroblastoma case.  We were thinking this is great something else to get some childhood cancer awareness out there.  While, I think it put the awareness out there, we just think personally it wasn't portrayed like it really is.  While I know we have too much time invested in this, that is different, we were hoping this would have given people the awareness of it. I was disappointed, they only said neuroblastoma once in the 1 hour show and didn't even show the boy with no hair to show that prior to surgery that they had even tried to get the tumor to shrink. I just think it was botched.  I will give it up to them, at least they tried.  

Emily had clinic Tuesday and Friday of this week and both visits required platelets transfusions because her platelets had tanked.  We were shocked that her ANC and WBC had tanked so quickly so she is already back on the GCSF to try to booth her immune system back up. Lately Emily has only seen the hospital and home with her low counts and I know she is over just being home all the time, but being hospitalized right now with a fever is so past where we were.  Emily's energy is very up and down and she is quickly tired, so we both thought both times she would need a blood transfusion, however she did not.  We were able to meet up with Dr. Gowda today and just talk about Emily and is what is happening.  He said he has received the news that Emily's scans were stable and that she went through with MIBG Round 2 and that she would need her stem cells given back to her. Dr. Gowda asked Mosse if they had a plan after Round 2 of MIBG Therapy and she indicated that there is currently no plan at to what is next until Emily has her MIBG on February 21st, and they receive the results. NO PLAN, scary. Mosse indicated to Gowda that we were advised to give Emily a good "quality of life".  We talked about options, we talked about what was out there and just really putting things out on the table. Doug and I actually felt today was the first time we actually felt like Dr. Gowda was geniune and cared.      

Doug and I have been reading a lot lately. Reading on where to go next, what to do next and what to do.  We are not stuck at staying at CHOP, we are not going to stay there if there is nothing that we can do. As for when we got the stable results, we were told as of that day we had no other nexts at the moment because she didn't qualify for anything because of her platelets. We are very interested in Sholler and I will have a call out to her next week.  Sholler has a great background and has some great things out there.  We are also interested in talking with Kushner at Sloan. When we were there for a 2nd opinion, Modak left a bad taste in our mouth, and we are still iffy on Sloan, but we can't shut it out either. I have to say that as much as Doug and I really don't want to, we don't want Emily to have to go through chemo again.  We just want her to be done with that side of things. However I think we will go with whatever will work, but as parents we just don't know where to go right now. 

Monday we head into VCU and Emily is inpatient for the day to receive her stem cells back.  We should see engraftment within 10-14 days and this is really want we need for her platelets.

That is all for tonight, I know that many of you have been waiting on the link for the Channel 8 News, so please continue to spread Childhood Cancer Awareness and about our Emily.

Give your kids lots of hugs and kisses.  NIGHT

6 Weeks Post MIBG Therapy

Emily making cupcakes with her cute apron from Sue

Tomorrow we have one week before Emily has scans to see if the MIBG Therapy was successful at CHOP. She is scheduled for MIBG Scan on Tuesday after the MIBG Injection on Monday with results from Dr. Mosse on Wednesday. Scanxiety is a severe understatement right now.

Emily had clinic today, and it was a long day at the clinic. However it was nice to be in the clinic and talk with the Joshua's while they were waiting for Meesha to have her bone marrow biopsy (http://www.caringbridge.org/visit/meeshajoshua) We had a feeling that she would probably need a blood transfusion come today since her hemoglobin had dropped so much prior, but we were hopeful that her platelets were coming back up on their own. However Saturday night, I looked over at Emily while she was sleeping and saw blood on her face. I freaked out and called Doug over. We saw some blood in her mouth, but wasn't sure where it was coming from, so we cleaned it out with a q-tip. Yesterday Doug saw a blood blister in her mouth on her tongue, but we thought maybe it was from her binky, we weren't really sure. During clinic we found that her hemoglobin had dropped considerably, so this will be her 3rd blood transfusion and we were shocked to find out that her platelets dropped from 31 to 6, so she was going to need platelets as well, 8th platelet transfusion since MIBG Therapy. Emily's ANC and WBC dropped a bit again, so we are still being very careful and making sure that Emily doesn't get sick or any germs.

Of course this brings a lot of concern for Doug and I worrying about her platelets recovering... I did bring this up with the doctor at CHOP by sending an email a couple of weeks ago. They emailed back with,
"The majority of patients treated with I-131-MIBG need frequent platelet transfusions following the therapy. Emily is now almost 4 weeks from her MIBG therapy and requiring platelet transfusions 1-2 times per week is not outside of the normal pattern. That being said, I hear and understand your concerns. Much will depend on Emily’s upcoming disease re-evaluations (as per the schedule below). We are always preparing for the “what ifs” so if indeed Emily’s MIBG scan in a few weeks shows that this therapy did not help we will have a plan for next recommended steps. If Emily’s scan is stable or better, it is likely that Dr. Mosse will recommend a second I-131-MIBG therapy and we would admit Emily to the hospital on 1/11/12 to receive that therapy on 1/12/12. We have many patients who go into a second MIBG therapy with low counts. We then re-infuse their stem cells about 10 days after completion of the therapy. If Emily is infused with her stem cells, yes that does limit some of her treatment options but is does not mean that she cannot receive any type of therapy for 6 weeks. Does all of this make sense? Please let me know if you have any additional questions or concerns."

So, at this point, we just wait to see how things go when she has clinic on Thursday and then how things are next week for scans. Right now we are working to locate a campground that is close by CHOP so that we are prepared should Emily be ready to do MIBG Therapy Round 2 and we have a place to go when she is done. This also helps with Brianna too, so we are hopeful to find a campground close by. If any of you know of campgrounds that are close by CHOP, open and relatively cheap, please email me. We also would prefer to be in our own area if we can because it leaves a lot less stress on all of us and also because of Emily's counts just to be on the safe side. Like I said if you know anything please let me know.

Otherwise Emily is doing great. She is eating well, playing and just enjoying no hospital overnight stays. We just continue to have clinic twice a week. We have noticed that Emily walks on her tiptoes and her walking has been affected by the radiation. Her hearing still seems to be fine and we really haven't noticed any other issues. She eats really well though, but not gaining any weight. She was 30 pounds when all of this started and today she is 27.8. For a 4 year old, Emily is very tiny and little, so we are always careful not to hurt her just when picking her up and things of that sort.

Send lots of love and prayers as we head into Philly next week for scans. Thank you so much for following our journey and keeping up with us as we charge on. Please give your kids hugs and kisses and tell them how much you love them.