I haven't updated here in a while, so I wanted to update everyone that doesn't read facebook or doesn't have facebook, so I am going to copy and paste to update you all...
Monday, February 10
Update on Emily...today is 7 days that she has been on with her 2 daily chemos. The first night she tossed and turned and her tummy hurt but she hasn't complained of anymore tummy pain anymore since the first night. The biggest issue we are seeing is the lack of eating and she isn't eating much so we are trying to find what she wants and likes now and then the past couple of mornings she has had bloody gums in the morning. Thursday of last week she had clinic and platelets were at 26 and they decided not to transfuse and just see how she does. If she continues with the bloody gums we will take her in before her appointment on Thursday this week. 15 more days of these 2 chemos and then she will start the other 2!
Both of Emilys sister's are sick, one with the fever and just tired and the other with stomach virus, so hopefully Emily will remain sickfree from either and we are hoping that they both feel better soon!
#emilysjourney #emilyhubbeldotcom #neuroblastomasucks #emilyupdate
Wednesday, February 12
Emily had clinic changed to today since the snow storm that is coming.
We came in and met with the dr to sign paperwork for the thalidomide that she will be on and check counts.
Platelets took a nose dive from 26 to 15 and her WBC is dropping also!
Pre-medicated her with steroids, Tylenol and Claritin ... Platelets were about 2/3 done and Emily broke out with a hive on her face and within a few minutes she started to feel funny, lips and eyes swelling and red all over!! Her anxiety started to go crazy which caused her nose to start bleeding and we couldn't stop it and she was throwing up blood ...Within minutes the room was filled with doctors and epi pin was given and Emily was being transported to ER!
We are now in ER under observation!! We hope once the meds wear off there is no other reaction bc they want her to wait for 4-6 hours!
Please send your thoughts and love that they don't keep her and we can go home!
Wednesday, February 12 (another update)
We are home!!
I will be honest and share with you, we were very scared today... The reaction Emily had today is not one she has ever had before and when her lips and tongue were swelling we were scared! Emily in true fashion was a true fighter today and she handled everything very well. Our nurse, Mrs Kathy, and the doctors and many other nurses were very fast in action and took care of Emily without showing fear and were great with Emily! Emily was scared but they were talking to her in calm voices and trying to keep her calm! She made me cry when she had to get the epi pen and it's horrible to have to hold your own child down to put her in more pain but knowing in the end it will help her. But still!
We had to wait 6 hours from the time of giving the epi pin, she still has petechia and is swollen but is ok. The ER wanted her to stay overnight but after talking to Dr Gowda he knows us well enough that we will not do anything to danger her and he talked with the ER doctors! Her hemoglobin was low and platelets were ok but still low but she has to come back Monday! We were instructed to give her Benadryl as needed and head to the ER if she has any allergic reactions immediately!
We are so happy that Emily is ok because today truly scared us!
Thank you all for the messages and texts and all those that checked in! Thank you so much for caring! The roads were a mess on the way home but we are home!
Thursday, February 13
Long night with Emily. About 3 am she starting with a few hives on her stomach and on her leg. I gave her some children's allergy... After 30 minutes it was spreading and I was getting nervous especially since the roads are a mess and dad was working! After another half hour her stomach ones were starting to go away and her leg had not! I kept checking her every half hour making sure she was ok and they were not spreading by 530am the hives were almost gone. My biggest worry was on her face getting any hives and her lips and tongue swelling again, thankfully that did not happen.
As of right now she doesn't have any hives, just looks like she has bloody gums again this morning. I will be keeping an eye on her today and hoping no more hives!
The roads here are a mess and they are calling for more snow later today. Be safe and thank you guys for checking in on Emily.
Thursday, February 13 (another update)
We are back in the hospital. About 1030am Emily started having a nosebleed and then throwing up. The throwing up didn't stop and she was very pale and lethargic. The 2nd time she went to get sick throwing up blood she could hardly make it to the bathroom her body was so tired. I quickly dressed her, stopped working at home and got her to the hospital!
Her hemoglobin dropped last night from 7.8 to 5.6 today! Extreme drop which is causing the extreme exhaustion, low blood pressure, low temp and high heart rate and high WBC and ANC! So now we wait for blood and wait for the blood to be given which will take a good 3-4 hours.
As for the nosebleeds and throwing up, they want to have someone from ENT look at her. Hopefully today but if not we will be scheduled!
Thank you for continuing to send your love and thoughts for Emily! It's been a long couple of days!
February 13 (another update)
We just got home about half hour ago after another long and stressful day at the hospital..Blood transfusion finished after 4 hours and no reactions! We are home with a few medicines that she needs to take along with her chemos as well as an epi pin in case we have any allergic reactions again!
We are hopeful for a calm evening and rest of the weekend. Dad will be home with the girls tomorrow and will be keeping an eye on Emily. She needs to be back in clinic on Monday to check to see how she is doing!
Thank you again for keeping up with Emily and checking in on her and all the messages of love and thoughts! We thank you!
Thank you for all the wonderful friends who offered rides if we needed them, offered to help at home, offered to keep me company at the hospital and all the love!!!! Thank you
Saturday, February 15
Emily kind of had a rough day today... She was pretty exhausted most of the day, did throw up some blood again today and hardly ate anything. Mid day she even needed some zofran which we really haven't had to do yet only at night before chemo. At this point we are not sure if these are the side effects of the chemo or what. She really has had a rough week, hopefully tomorrow she has a better day.
Today, Emily slept until noon today, so she must have needed the rest, she still seems to be quite exhausted still and not eating much yet. I am hoping she will turn around today and gain some more energy and feel better and eat more. Wednesday she was already down a pound, so we are hopeful that this turns around since she hasn't been eating much. We can't afford her to lose a lot of weight since we have been working so hard to get her weight up over the last year. Tomorrow she has clinic to check counts in the morning and see how she is doing. Tomorrow will also mark that she has 1 week left on the etoposide and cyclophosphamide. After that she will start 21 days of thalidomide and Celebrex. Those are two new drugs that Emily has not ever had before so we have no idea how these will react with her.
Please continue to keep Emily in your thoughts as she continues through this.
Remember to hug and kiss your kids and tell them how much you love them!