Not Feeling Well -- Day 8, Round 2

So here we are Day 8 after the chemo started 8 days ago. We had a pretty calm weekend after the ASK 5K Walk. I did deaccess Emily Saturday afternoon. That was somewhat eventful, because it was the first time I had ever done that and our nurse we had last week, didn't give specific enough instructions. So, once the dressing tape was off, I tried to take it out and it wasn't budging and I freaked out so I had to call Critical Care who helped me and it was successful. Sunday Emily was feeling stuffy/runny nose, but still was feeling ok. She woke up several times unable to breath or from coughing too much and was up at 4AM on playing on the iPod coughing. She said her throat was sore and she was drinking lots of water.

Emily wasn't scheduled for count checks until tomorrow, however this morning when she wasn't feeling well, couldn't breath and coughing, I put a call into the clinic to see if there was an antibiotic that we can put her on to get this nipped in the bud. Instead they wanted to see her in the afternoon to do a throat swab for strep throat, check her counts and then give her the neulasta shot. This meant that Emily would need to be accessed again, and her anxiety was high and she was extremely upset knowing that she would need to be accessed. Thankfully it was done quickly.

Well Emily's counts have dropped to 0.1 which means her ANC can't be registered with no WBC. OMG they dropped quickly, Friday's WBC counts were 3.5 and today they were 0.1 WOW. At this point, its a waiting game for her to get a fever. Our hopes is that she does not, like we did last time, and we really hope she doesn't. But with this cold, we are not quite sure what she has because the strep will take 24 hours to come back and really there is nothing that we can do to prevent this. If is a cold, or strep it sucks with the fever and low counts.

Tonight since we have been home from the clinic, Emily has been sleeping on the couch not wanting to be messed with. At one point she woke up in sweats, so we put a sheet on her, but thankfully no fever so far, I think we were at 99.8. I have been sitting by her, still doing so while updating and she is rubbing my arm. Such a sweet girl, I hate to see her have to go inpatient with a fever however the thankful part she is already accessed and we won't have that added in this time.

Send your thoughts and love that we stay home like we did last round!!

We have received a few emails of people who want to send a gas gift card quickly to us for next weeks travels to Michigan. We really don't want to leave Brianna home this time because she is having a harder and harder time without us and Emily and we just don't want to do that to her again! It is so not fair to her. So, it looks like we will need to leave Monday night to be there by Wednesday morning. The address to send gas gift cards is:

The Hubbel Family

PO Box 5383

Midlothian, VA 23112

Hopefully we will not be inpatient with low counts and not be able to make the drive for her scans because I know previously she had low counts quite a long time before they started to go up. Please send your thoughts and love that she stays home and we are able to make the trip next week.

Thank you so much for you love and thoughts as we continue to fight the fight. Emily is such an amazing kid!

Round 2 New Trial Started

last week and has been completed...

Just wanted to put a quick update out there. I apologize there hasn't been an update in a good while. I have really pulled myself away from social networking as much as possible just from seeing and reading of other children passing or not doing well and from negativity that has been received.

Emily did have quite a bit of a hard time there for a bit prior to starting this next round, and it took her 2 weeks to get back where she needed to be in order to start the next round. She lost quite a bit of weight (about 5 lbs, which she didn't have to lose because she is already entirely way too small for her age), didn't want to walk from being very weak, and very fussy. Also her ANC and platelets and others were low which also contributed. They did take her off Nifurtimox for 7 days to help get her back on track. During this time she was taking megace (which is used to treat the loss of appetite) and each week we have been going up about 1ML. When the 7 days were over, we had the option to either stay off the nifurtimox or go back on, but if we wanted her to stay off of it, she would no longer be able to be on the trial. The positive that we are seeing is that Emily has had the lowest HMA & VMA levels that she has ever had since being diagnosed and are now within normal ranges, so we honestly feel like what we are doing is the right thing.

With the help of megace, Emily is eating well and has gained 2.7 pounds and is now at 27 almost 28 pounds, so the megace is doing its job. This past Monday Emily ANC and platelets were where they needed to be and she was able to start Round 2 of the Nifurtimox trial. So the chemo started. Emily's sister from Massachussetts was also able to be here and visit and helped with clinic during the chemo this week which was extremely helpful.

Chemo completed Friday after an extremely long week with long days at the clinic every day and each night Emily was exhausted and ready for sleep. She had moments twice this week where we thought she was going to sick, but she did not thankfully! So far her counts have not tanked and for that we are thankful, but we are being very careful to keep a close eye on her and making sure that she stays around healthy and feels as healthy as possible with no fever. As we all know fevers mean inpatient stays.

Scans have already been scheduled for the week of May 7th at Helen DeVos in Michigan, but we are just waiting on the final dates and times. Our hope would be just to drive our own van since last time we had to leave on the weekend and be there 3 days before the scans and couldn't take our youngest with us and stay in the Renucci House, however with gas prices that probably won't be possible. So if any of you are interested in sending gas cards, we would love that because they would be extremely helpful to make a trip from VA to MI.. If not we will be looking into seeing what either PALS or Wings of Mercy can do.

Top: Jessica (BF), Myself, Jessica (Cousin),
April (sister), Elyssa (daughter), Jessie (daughter)
mine Lana and Sheree (RM Friends)

Lastly yesterday a group of 8 of us did the 5K ASK Walk for the ASK Organization which helps the clinic where Emily and many other children are treated and also helps the school where Emily goes when her counts are well. "Team Emily" ended up making $695 and without the help of all our fans and friends, we would have never made that. I was very happy with the outcome and next year hope to make a bigger "Team Emily" and make more donations! Again thank you so much family, friends and fans for helping making this possible. It means so much.

I want to continue to say thank you to everyone for your continued support, because it totally makes things possible for us and I just want to say thank you! Thank you! Thank you!

Remember to hug and love your hugs and tell them how much you love them. Please also send your love and thoughts to Krysten Nicole Collins who is fighting Neuroblastoma as well and not doing well right now.