Feeling GREAT!

emaleekate — Wed, 14 Dec 2011 16:44:05 +0000

Emalee has been feeling great! She was able to go to Disney on her make a wish trip and had an amazing time!!! Give Kids The World was such a wonderful place to stay and she loved all of the theme parks, rides and meeting the characters! We are very grateful to Make A Wish for making it all possible for Emalee and our family…they are an amazing organization!

Since we have been home from our trip to Disney, Emalee has been back to Sloan Kettering for another round of rituxamab and chemo to help lower her HAMA levels. So far they have not dropped enough to be able to go back onto the original 3F8 antibody trial she started yet, but they are hopeful that they will drop and she will get another dose of 3F8 soon! Otherwise they will continue with another dose of the rituximab and chemo in a few more weeks! She is also back on her second round of accutane now too! She has been taking it a lot better this time, but the side effects are about the same! A lot of very dry, peeling skin on her face and some major mood swings and meltdowns, but at least she is not fighting taking it like before!!

We are now headed back to NYC tomorrow for Emalee to get all of her scans on Thurs. & Fri. of this week! She will be having a CT, MRI, MIBG and Bone Marrow done and then we will be headed back home to celebrate Christmas with our family! I am getting a little nervous about the results and wish they weren’t being done so close to Christmas, but I am praying there is no evidence of disease and everything goes well! Please keep her in your prayers and I will update as soon as we hear the results! Thanks so much!

We would also like to wish everyone that has been following Emalee’s journey and keeping her in their prayers a Very Merry Christmas and a Happy and Healthy New Year!

Update: Feeling better and DISNEY!

emaleekate — Thu, 27 Oct 2011 04:14:28 +0000

Emalee is feeling a lot better this week!!! The diareah has all stopped and her c-diff test actually came back negative, even though we had started her on the antibiotic just in case! I guess it was better to on the safe side by starting it though just in case it was c-diff! We actually just got back from NYC last night! She went to the hospital for blood work and to have her temporary line removed! She did ok with getting her port out….well i say ok because its out now, but she screamed bloody murder the whole time they were doing it! I don’t think it actually “hurt” as bad as it was just the fear of knowing they were going to pull it out while she was awake! She is happy now though and will be able to swim while we are in Disney for her Make a Wish trip…. so that is a bonus!!! Sloan did decide to go with a new antibody treatment after we get home from her make a wish trip. It is called rituxan. They said it will attack her b cells, making her hama level hopefully drop and then she would be able to go back onto the other 3f8 antibody trial that she did one cycle of when it does. We will go back to Sloan to start the first dose on Nov. 15th and then again on Nov. 29th. for the second dose and on the 30th they will give her a different type of low dose chemo call cyclophosphimide (sp?). Then we wait and retest the blood for a hama level and they will continue to test that for up to 3 months. If it does not come down within that time, they will repeat the same cylce of rituxan and chemo again and if it does come down she will be able to go back on the 3f8! She will also have to begin her accutane again on Nov. 14th! This is done for 2 weeks on 2 weeks off 2 times a day for a total of 6 cycles they said. Ugh…this is just like before when she was on it….it should be a “fun” as last time I’m guessing! Anyway….everything else in her blood worked looked good yesterday and we are now getting packed and ready to leave for Disney on Sunday! She is sooooo excited you would not believe it! I am praying she stays feeling well and has an amazing time there! I just cant believe her trip is finally here…Nov. will be over in a flash with going to Disney until Nov. 9th and then starting this new treatment at Sloan…and then thanksgiving in between….the month will just fly by…gosh we’ll be right into Christmas in a flash….unbelievable! Well please keep her in your prayers that she has a safe and fun-filled make a wish trip to Disney and that the next part of her treatment is successful! I will post pictures when we return!

Thanks again for all of the prayers!

Emalee Halloween (1)

emaleekate — Thu, 27 Oct 2011 04:13:48 +0000

Cycle 1…DONE! Keep Praying!

emaleekate — Sat, 22 Oct 2011 14:05:05 +0000

Emalee completed cycle 1 of her 3f8 treatment at Sloan Kettering in NYC during the first week of Oct. It had to be the most horrific of all the treatments she has had so far! The pain was so intense and awful, she had bad allergic reactions to it with lots of swelling and hives….it was just terrible to physically watch her going through it! It was literally like taking the whole week of the CH1418 antibody treatment she had a year ago and packing it into a 30 minute drip….meaning she just had a lot of the same symptoms that happened over a weeks time with the ch1418 antibody happen in 5 minutes flat with the 3F8 antibody! It was very scary to watch her go through it! Needless to say she managed to finish the week of 3f8 and come home on Saturday! She continued to have residual pain in her arms, legs and belly throughout the whole week when she came home. They say its like a peripheral neuropathy that their body is feeling! Then she had a bad attack of hives covering her entire body from Tues. through Fri.that week as well. And she has had constant diareah since we finished the antibody too! So really, the past two weeks have been pretty rough on her poor little body! God Bless her!

Now the plan is to test her blood for a HAMA level 10 days after the end of the 3f8 treatment. This will determine whether or not she can begin cycle 2 or not! We went back to Sloan on Oct. 17th for the HAMA test and found out on Oct.19th that her HAMA blood work test came back positive so she had to stop the 3f8 antibody for now until the blood comes back negative! Now this means she will start a new antibody called rituxan which will be infused over one day, 14 days later she will get another infusion of the rituxan infused over one day and then on the very next day she will be getting a low dose chemo infusion. This will hopefully reverse the positive results of the HAMA for her to be able to restart the 3f8 again. They will wait a little while and retest her blood for the HAMA level. If it comes down she can continue with the 3f8 antibody again, if it doesn’t we wait again another month and retest the blood again…..continuing until it goes down under 1000. Her level right now is at 11025….so they said it may take awhile to come down under a 1000. She will also begin to take accutane 2x a day for 2 weeks on and then 2 weeks off…repeated over the next several months too! Man i dread that one again, she was very nasty & mean on that stuff before!!! So now we are going back to Sloan this Tues to have her temporary broviac line removed, discuss when she will be starting the next part of the treatment with the docs and pick up her new meds!

Right now she is finally feeling a little better pain wise from the 3f8 and all of the hives are gone, but she still continues to have this horrible diarrhea! When I finally talked to someone at the hospital on Thursday, they said it is probably coming from C-Diff…some type of bacterial infection, not as a result of the 3f8 since it has lasted so long! I had to take her for a test to check it yesterday and we will get the results on Mon. They called in the prescription and told us to start just in case….i really hope it helps….she has been going to the bathroom about 6 to 10 times a day, its crazy!

On a happier note……Emalee decided few months ago that she wanted to make her “Make-A-Wish” Wish….she wants to go to Disney for Halloween! We decided to let her do it since this has been the first time she has been NED since last Feb. 2010 when she was diagnosed! So what better way to celebrate the good news that she is currently cancer free but to take her to Disney! We officially leave on Oct. 30th for her make a wish trip and are staying at Give Kids the World!!!! I cant wait for all of us to have a much needed break from hospital life and let Emalee have some well deserved fun and enjoy being a kid for once!!! It will be nice too that she will have her broviac out too and can even get to swim while we are there!!! So look for lots of pictures to come when we get back!

Please continue to keep her in your prayers and I will let you know when she will be starting her new treatment and post some pictures from her Make-A-Wish trip when we get home!

Scans Complete! Onward!

emaleekate — Mon, 03 Oct 2011 00:27:12 +0000

Emalee has completed all of her scans at Sloan Kettering and they came back clean….she is still N.E.D.!!! We are so very thankful and happy for the news! After a long discussion with her neuroblastoma team of doctors at Sloan Kettering last week, they decided that it would be in Emalee’s best interest medically to continue on with more treatment! They feel that since the tumor that was removed in June by Dr. LaQuaglia was still live, active neuroblastoma even after she had completed over a year & a 1/2 of chemo, transplant, radiation and ch14-18/IL2/Accutane antibody therapy, that they do not want to take any chances with leaving anything behind that could not be detected by scans because it would most likely be viable neuroblastoma! So the plan is now to start a 3F8 antibody trial this coming Monday Oct. 3, 2011 at Sloan Kettering in NYC. Em has already started the trial by getting GMCSF shots which began this past Wed. and she will contiue getting them through the week of the 3F8 antibodies. They last for a total of 10 days during each round of antibodies. The 3F8 treatment will all be done on an outpatient basis M-F at Sloan with a 2 to 4 week break in between cycles and is known to be extremely painful for the kids! I am praying her little body tolerates the treatment and that she is not in too much pain! We have been told it is very similar to the antibodies she had once before and they were very painful for her then, so needless to say I am somewhat anxious for her to begin this trial knowing what she has already went through with the other antibodies! They doctors also said that because she has not had a very high dose chemo in awhile, that she may “HAMA” rather quickly (which basically means that her body will produce an antibody towards the antibody they are giving her and will pretty much make what they are giving her ineffective) so then they will have to make a decision whether to keep her on it or not, but if she doesn’t “HAMA” they said they will continue with the 3F8 antibodies for a period of 2 years or until she does. So this means we will be traveling regularly to NYC and staying at the Ronald McDonald house while we are there. She will also have to start taking accutane again as well. It was practically impossible to get it in her last time and it made her rather mean as well, so I am praying it goes a lot better this time too! Please keep her in your prayers that this 3F8 anitbody trial is effective at getting rid of any neurblastoma cells that are left undetected in her body and that she is not in too much pain while getting the antibodies and everything goes well for her as she continues her battle against neurblastoma with this next phase of treatment! I will keep you all updated as to how she does though cycle 1 of 3F8! Thanks so much!

UPDATE: Keep Praying

emaleekate — Tue, 13 Sep 2011 11:57:38 +0000

Emalee has completed her third and hopefully her last round of chemo at Sloan! She did really well again with it other than the normal diareah and not really eating much of anything for a few weeks! But now she is back to feeling more like herself and is getting ready to have a full set of scans & tests done this coming week. She will be doing a 4 hour urine collection, an eye exam, an echo, MRI, CT, MIBG and a bone marrow test. After the doctors review all of the test results, they will finally make a decision on what they next course of treatment will be! We are praying for all good results and trusting in the doctors to make the right decisions for emalee’s care!

Thanks for all of the love & support and please continue to keep her in your prayers! I will post more when we get the final results!

P.S. The girls had an amazing time at the Joe Jonas concert & did get to meet him! Check out the picture from their meet & greet!

Emalee Update! :-)

emaleekate — Wed, 17 Aug 2011 21:06:32 +0000

Em has completed two rounds of chemo so far at Sloan Kettering. She did pretty well with them and has only one more left to go next week. Hopefully after that last round we will find out what they want to do next. She is very anxious to get back home, i think shes had enough of the Ronald McDonald house for awhile and misses her own bed and friends & family! We are hoping to get home in September sometime if everything goes well! Last week she went for her audiology exam and did really well! She’s only missing one high frequency pitch in the right ear and two in the left…..the doc said that was actually great for the types of chemo she’s been through! Yeah for all of these miracles she is receiving. This week she is going for a ct scan on Thursday…it’s going to be her first time trying it without anesthesia…..fingers crossed! Please keep her in your prayers that it is still clear and she makes it without being put to sleep!

On a fun note…..I was able to get Emalee and big sister Kaylee onto a VIP list to go see Joe Jonas this wed. Night at a place TriBeCa where he is performing for only 200 people! They are both super excited and are hopefully going to get to meet him at a meet n greet after the show! This is like a dream come true, especially for Kaylee, since she’s been infatuated with him forever! I’ll definitely post a picture if they do meet him & I will update when we her more news on emalee’s scan! Thanks for all of your prayers and support!

FINALLY! Neuroblastoma is GONE!

emaleekate — Sun, 31 Jul 2011 20:00:11 +0000

We got great news yesterday. Finally what we have been praying for. NED. No evidence of disease. The Neuroblastoma is gone in the bone marrow, is not lighting up on mibg and the MRI looks good too. We r so happy. She is gonna stay in NYC and do two more rounds of chemo and then they will decide on the antibodies after that but they are leaning towards not doin them since she already had a different kind at Geisinger. But we will know for sure after chemo. It is just amazing and we are so thankful.

After we got the great news the RMDH gave us four tickets to a Yankees game last night. It was a great celebration for our family. It was First class all the way in the legends suite which included second row seats behind the dugout, a dinner buffet before the game, in seat service of whatever else u wanted to eat or drink during the game brought to by a waitress and the works. Em even got a ball from Robinson Cano. His mom was sitting in front of us too. It was amazing. Then kaylee also got to meet Kenan Thompson, he is on Saturday night live and played in the fat Albert movie and he used to be on nickelodeon when kaylee was younger. He was a few rows away from us at the game and she got pics with him and an autograph. She was thrilled. We also saw Denise Richards, Charlie sheens’s x wife earlier that day when we were shopping. Kay always finds a way to meet celebs in NYC. It’s funny. we just had an awesome day for once!

Well I hope u are well and staying cool. Still terribly hot here in NYC. Ttys luv Tara

UPDATE: MRI Results

emaleekate — Mon, 25 Jul 2011 23:08:20 +0000

Em is feeling a lot better today. The diareah has slowed down and the bone marrow pain is easing up and she is acting a little more like herself. We also got the MRI results today. They saw gallstones, which is prob what he felt in the pancreas during surgery he said. They also found two small lesions on her liver, but he said they have seen this before in kids that have gotten high dose chemo so he said they would just watch it closely and they also saw something on her t12, which I believe is on the spine, but he feels that it could just be a benign cyst. They will review the results more at their tumor review board meeting tomorrow and let us know more on her appt on thursday. So overall I guess it was good news from the way Dr. LaQuaglia sounded…..no new masses or tumors were seen…..so we are happy with that! I will post more after our meeting thursday.

Thanks for all of the prayers and support!

UPDATE: Results are CLEAR!

emaleekate — Fri, 22 Jul 2011 17:47:00 +0000

We got the results of the mibg test from yesterday and it came back clear! YEAH…..finally some good news for once! It is the first time it’s ever come back clear…..mainly thanks to Dr. LaQuaglia for getting the rest of that tumor out! We are pretty excited about the results! Now we still have to wait for the results of the MRI of the pancreas that she had today and the bone marrow test. Praying they are ok too. She is still pretty sore from the bone marrow…..man she’s had them before but this time was awful. Ugh poor kiddo can barely walk! Then they said they will be discussing her at their tumor review board meeting next week n let us know what they want to try next, possibly another round of chemo and then 3f8 antibodies, but they aren’t sure yet!