Clinic Visit

Emily had a clinic visit today!!

They did a count check for labs, checked urine markers and vitals. Emily gained almost another pound which is great! Her blood pressure was up today and we haven't seen a high blood pressure in a while. Dr Gowda wants Emily to have an echo within the next month to see if anything has changed since we have not had one in 2 years! Labs came back and WBC, platelets and ANC have all dropped a little bit, nothing of huge concern, just gotta watch the trends and see what is happening. It is odd that they have dropped but they are all still in good numbers that Emily is fine.

We did talk about ferritin levels which are high but he explained that they are most likely high from many transfusions and some of the chemo she had he said if they continued to go up he would need to give her medication so it would not affect the liver.

HMA/VMA will be back next week sometime so we wil be able to see her urine numbers and how they are looking!

Next week is Thanksgiving and we look forward to spending time with family! It will be nice to have family time. We hope all of you have a wonderful Thanksgiving!

Don't forget you have until November 30th to collect bandaids for Emilys 3rd Annual bandaid drive! She was so excited to see Frozen Bandaids because we know so many girls love Frozen. After talking with the clinic today we heard that they don't see a lot of boy brand bandalds and horses. So if you want to help out you have until the 30th to send to our PO Box.

We leave Monday, December 1st for scans!! Don't forget to wear your Emily gear on December 4th the day Emily has her scans and we get results.. Continue to keep Emily in your thoughts!

Remember to hug and kiss your kids and tell them how much you love them.

Today's Clinic Visit

Emily had clinic today and thankfully today she didn't need any transfusions. Platelets are still low at 42 (they were 32 on Thursday of last week so didn't go up much with platelets on Friday)!

After counts she had her First Pass Scan (nuclear heart scan) which was pretty easy and she did well. Pic is of Emily waiting for the heart scan. Hopefully we will have results tomorrow on the heart scan of how things are looking.

Please continue to keep Emily in your thoughts and love. She is doing well though. She goes back Friday for counts!

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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.

Happy New Year

2011 has proved to be a year that we don't ever want to repeat, however we have grown so much in this past year. We learned more in one year than we have ever learned all together. We learned who our true friends and family were and are and those that left our side. But most of all we watched our daughter go through complete torture and smile through it all. Emily is our hero and she is so strong. Emily we love you so much! But most of all, for the year of 2011, we learned... "You never know how strong you are until being strong is the only choice you have."

This past week a family that we met while in Philadelphia that also lives in Virginia whose daughter has Neuroblastoma, The Kudro's, Hayley lost her fight to neuroblastoma. Karen and Eric, Doug and I just want you to know you are amazing parents and Hayley is a beautiful little girl. All we remember is the night we drove to the RMH and you two were waiting outside for us and she was waving her hands all over and just so excited. We are sending lots of love and prayers to you!

This year was also one of the hardest year that we have ever had. December 18th marked one year since this journey began and December 23rd marked one year since we learned that our daughter, Emily, has (that dreaded word) cancer, neuroblastoma to be exact. A cancer that is hard to beat. The loss of Hayley was a lot harder on us than we ever imagined, because it just feels so close to home. But we also know that Hayley is no longer in pain and for that we are grateful.! This past year has been a journey that Doug and I have learned to do many things on our own because there hasn't been much help, learned to cope with something that I never thought we would have to deal with and continue to move forward with the rest of our family while working.

While I don't want to bring a sad post tonight, I just want to say we are thankful that we were all home together as a family for Christmas Eve and Christmas Day and here we are, its New Years Eve and we are all home together again. For that we are very thankful!

Right now we head back to CHOP on January 9th for an MIBG on the 10th and results on the 11th. The results we are hopeful that they are showing improvement and if they are, then we move forward and will be placed inpatient to start Round 2 of MIBG Therapy. If the scans do no show improvement, they have some other thoughts for us. Scanxiety is surely in our minds, but we are remaining positive that there is improvement.. Emily has had 7 platelets transfusions since we have been home and 2 blood transfusions. For the first time, Thursday, Emily did not need to have a platelet transfusion and we are hopeful that they are coming up and staying up on their own. Emily has clinic Monday morning, so we will see how things are.

As the year comes to a close, and we start 2012, we are looking for a much brighter, happier and healthy with CLEAN scans!

Happy New Years to all!

(I also wanted to post Coles Pages, with Emily's page... http://www.colespages.org/EmilysJourney/pages/visit and you can actually purchase stuff with Emily on it. Check it out!)