Another Sloan Trip with GREAT News

We are back from our trip to Sloan Kettering in NYC for scan week  & Emalee did all of her scans, expect the bone marrow of course, without sedation this time! She was soooo brave….it was really loud and long and she stayed still even though I could tell she was a little nervous! We were very proud of her!

We did get two of the test results back before we left…..the first one was the mri of the brain and the second was the ct of the chest, abdomen and pelvic and they both were CLEAN…YEAH!!!!  We are still awaiting the mibg scan results and the bone marrow now and will hopefully hear something next week about them!  We also got to meet with the new hematologist at Cornell, who by the way was great, and she ordered blood work and also got the results of the mri of the blood clot and has decided that Em should continue the Lovenox injections twice a day until Aug. and then they will rescan and at that time she will make a decision whether to do more or stop it or try something else!  So even though that still stinks for Em having to get those shots, we are overjoyed about the results of no new disease on her scans and are also very hopeful  that the other two scans will be great as well when hear the results!  The team is meeting next week as well to decide more on whether or not to put her back into the 3F8 antibody trial yet or not!  So we are also anxious to hear what they have to say about that!

We had a real nice trip this time …..we got to attend a yankees game, VIP style I must say too….Row 1 right behind home plate, we could reach out and touch Jeter right in front of us….a big thank you to the generous person that donated those tickets to the Ronald McDonald house that is for sure….the seats were absolutely amazing and then we (kaylee and my friend and I) went to see Mamma Mia on broadway one night too!  It was a wonderful play and nice to spend some time with Kaylee!  And Emalee was also treated to a princess shopping spree with another little girl from the Ronald House by a great person named Barbara from Candlelighters and Almar of NYC!!  They got to go to a showroom and pick out anything they wanted….wow did she have a blast and she is certainly set with “bling” for awhile lol!

 The only horrible part of the trip was that Emalee’s Ipad2 fell off of the couch at the ronald house and onto the floor and when we opened it up the next day it was shattered to pieces!!!  I just couldnt believe it…..it had a case on it and it was closed and didnt even fall hard or very far down….i actually didnt even notice it until the next day because I never even checked it when it happened, thats how lightly it fell!! UGHHHHH  so now she has nothing to keep her occupied on these dreadful trips to the hospital and during all of the time spent in there too….This ipad was an absolute life saver for her over the past year, I am soooooo upset for her!!! She played games and watched movies and read books, it was the best thing ever to keep her mind off of things!  I even went to the ipad store and tried to plead my case with them and even told them about her situation and they could do nothing for me 😦    I feel so bad because she will be lost without it and I just can not come up with that kind of money again to get another one at this point and time!!!  So that was the worse part of the trip, which I guess in the long run, if that was the worse thing that could’ve  happened while we were there, I should be considering myself lucky right!!!  We got good news about her and that is what is really important!!!  It’s just upsetting for her, so I feel bad!

Thanks so much for all of the prayers and love and support you all have given! We are truly blessed to have such wonderful people in our lives praying for our little girl!!!! I will post when we hear more news on the rest of the scans!!!   F.R.O.G….Fully Rely On God …. Love, Tara

Feeling Great….and on the beach! :-)

Emalee has been feeling great! She still has the blood clot and is taking Lovenox injections twice a day and she has gotten a lot better at taking the shots! She recently graduated from Preschool and went to her Kindergarten Orientation as well! She did really well with that too and loved her new teacher (which is also her godmother) and the classroom aide….I just can’t believe she will be able to start Kdg. in the fall already…we are really excited for her to have some “normal” kid routines finally!

We just got home from a little family vacation we took to Ocean City, Md. last week! We had an amazing time at the beach! We got to met 4 really nice families that were staying there and Emalee had fun playing with their kids! We got to do so many fun things too! We went parasailing, the girls took surfing lessons, Kaylee and Todd rode the segways on the boardwalk and kaylee and emalee were on a radio station and live pod cast at Seacrets and Emalee actually sang the song Call Me Maybe for everyone live on the air…it was so cute! We took a tour of the Coast Guard and went out on a boat ride with them and the girls got a chance to drive to boat, we had family photographs done on the beach, went to an amusement park and waterpark and out to eat at a couple different restaraunts! We also went to a meet and greet and met some of the Baltimore Raven football players and cheerleaders, we went to a car show and Kaylee got to meet Jeremih and Astro, some rappers that were performing there, and we also were invited to be VIP’s at the OC Air Show! It was really a fun time! We can’t wait to go back again sometime soon!

Kaylee finished up her sophmore year with honors and is now at cheerleading camp for the week and comes home Friday and then we leave again to go back to NYC for a week for Emalee to have all of her scans done again! UGH…..scananxiety is setting in already!!! This will be her first set of scans that she will have with ever being off of treatment of some kind for three months straight since she they put her trial on hold due to the blood clot they found in March! So needless to say, I am even more nervous for this set of scans since she has not had any meds for the first time ever! We are also going to Cornell Hospital across the street from Sloan Kettering to meet with a new hematologist to discuss Em’s blood clot too since it has not dissolved at all as of the last scan she had! I hope they can come up with a new plan instead of these darn shots! Better yet, I pray the clot will have dissolved on her new scan and we will be totally done with that whole thing and she can resume the 3F8 antibody trial she was enroleld in! I did finally learn how to give Em her lovenox shots though while we were on vacation! She (and I) did really well with it considering I never gave her a shot before in over 2 & 1/2 years of her treatments….I really thought it was going to be a lot worse, but she was so brave and let me do it without any problems and I managed to suck it up and be able to give them finally!!!

We would love it if everyone would please keep her in your PRAYERS for great scan results next week and better news on the blood clot issue and I will update when we have some results! Thanks so much and we hope everyone has a very safe and fun summer!

Emalee’s 5th Birthday

Emalee has been feeling well and had a great Easter at home with her family!  She even got a new bicycle from her firemen friends at the Rice Township Fire Co. She loved it so much and has been riding it ever since!!!   We finally got the results of her MRA of the blood clot from sloan kettering and they said it is stable….which I guess means it hasn’t grown any bigger but the lovenox has yet to dissolve any of it!  They said we will continue giving her 2 shots a day of the blood thinner Lovenox and they will redo the MRA again in a few weeks!  She is doing a lot better getting the shots though, esp since we were finally introduced to the numbing cream it has gotten a lot better for her!  Her poor little legs are a mess though….very black and blue and it’s getting harder to find a spot to put the next shot each day, but hopefully it will do the trick and dissolve the clot and she will not need another surgery.

Emalee has a big day coming up this week!  She will be turning 5 on April 19th….she is very excited to be able to celebrate her birthday at home with a Gymnastic Party at the Sportsplex with her new friends from school! It’s the first time she has been able to have a party and invite her friends from school…so it should be a fun day for her!  She chose “Justin Bieber” as her party theme this year and is so excited to see her cake that a lovely lady named Joy is making for her through Icing Smiles!  Look for pictures to come soon!

Please keep her in your prayers that this blood clot soon resolves and she can go back onto her antibody treatments soon and that she has a very happy and above all healthy year ahead!  Thanks so much!

It’s been a while….so let’s catch up!

Sorry it’s been awhile since I have time to update Emalee’s blog……It has been a crazy few weeks!!!   So I will go back to where we left off…. They decided to admit children for high dose 3f8 at Sloan Kettering now, so she was admitted on Feb. 26th to start her 2nd high dose of the 3f8 treatment! The treatments began on Monday and she got very sick from them and was in a lot of pain, but she made it through the first two days ok. But by Wed, her blood pressure had been very high and we also noticed that her left leg had been a lot colder than her right leg and the blood pressures were a lot lower in that leg as well….but they decided that it was still ok to continue her third day of treatment of the 3f8 antibodies. They started the 3f8 treatments and within about 15 minutes or so of the infusion Emalee had a terrible reaction. She went into a little seizure like episode and then stopped breathing on us. They had to pull the code button and a lot of doctors came to her room and we desperately tried to get her start breathing again and thankfully after she was given epinephrine and oxygen she did pull through and started to breath again! It was very scary to watch this happen to her and we were all very shook up by the situation but being the little fighter that she is, she was able to overcome this! Later that day after talking to her doctor about the whole situation and myself not feeling very comfortable about continuing the 3f8 treatment the next day, we decided to put it on hold and see how she recuperated! I also spoke to the doctor about her left leg being very cold and the low blood pressures in it as well and told him we were very concerned that maybe the cancer had come back to that same area in which she had tumors before and it was cutting off circulation or something! So they decided that they would send her for an MRA scan the next day to see if anything was wrong. By Friday we got the results and thankfully they did not see any new tumor growth, but they did find a significant blood clot on the arterial artery to her left leg which is most likely restricting the blood flow to her leg and causing it be very cold and have a loss of blood pressure! It is another bump in the road for her, but one that we can definitely deal with a blood clot versus what we thought it may be! They decided to keep Emalee in the hospital for 4 more days to monitor her and begin her on a blood thinner called Lovenox. They said she will be taking the lovenox injections twice a day for quite some time to try to dissolve the blood clot, so I learned how to give the injections through an insuflan so we could at least spare her the pinch of a needle two times a day! Emalee is very scared of the injection regardless of if it goes through the port or into her thigh, but they want to try this route first before rushing into any major surgeries they said! So we were able to then come home from the hospital for about 5 days and had to return to Sloan for scan week for the week of March 12th! She had all of her scans…..MRI of the brian, CT of the chest, abdomen and pelvic, MIBG and also a bone marrow done during that week! Things went well and she was a brave little girl getting many peripheral lines placed each day since she does not have her broviac any longer and we returned home the following weekend. She was pretty sore from her bone marrow tests and is getting very swollen and bruised from her lovenox injections, but seems to be doing well! Yesterday I finally spoke with her doctor and got the results of her tests! We are very thrilled that the bone marrow is clear, the mri of the brain is clear, the ct shows the same spots as it did before in her lymph nodes and her spine but the MIBG did not light up so they are not worried about them at this time! It was wonderful news to receive and we feel very blessed! Her doctors have now decided to put all of her 3f8 antibody treatments on hold for now…..they said that the risk now outweighs the benefit of getting the antibodies due to what happened during the last treatment and with the new formation of the blood clot. They would like to focus now on dissolving the blood clot and said it could possibly take 3 to 6 months of twice daily lovenox injections to do so! I am a bit concerned about it working though because her left leg is still staying cooler than the right and she is now saying it has pins and needles in a lot! The doctor is scheduling her for another MRA to check on the clot within the next week or so and said we will go from there! Hearing the news that we are putting her treatments on hold is bitter sweet for us ….as happy as I am that she will not have to endure the nasty treatments and side effects of the 3f8 for awhile, I am also sad because they say how wondeful the results from 3f8 can be at training the body to fight off the cancer cells and we certainly DO NOT want this return at all!!! But….We trust that God has a plan for Emalee and that he is guiding the doctors to make the best decisions for her course of treatments and pray every day that the cancer stays away and never returns! I will update as soon as we know more about the results of her MRA….until then thank you for all of your prayers and please now pray the blood clot dissolves with the help of the lovenox very soon and she will not need any other type of intervention for it! Thanks so much!

Two Years!

WOW….I guess we have been caught up in Emalee feeling so well and enjoying being a typical 4 year old over the past couple weeks, I let myself “forget” to update her web page….sorry!!!

We actually just marked Emalee’s 2 year anniversary of being diagnosed with neuroblastoma last weekend! I am sure it was the worse day of my entire life…..sitting in that hospital room and hearing those awful words…Your daughter has cancer!!!  Absolutely devastating!!!  I really can’t believe it’s been two years already, but right now with God’s grace and everyones prayers, love and support she is beating this monster, feeling well and being a typical little 4 year old girl and we couldn’t ask for anything better than that right now!!!!

I guess I will go back to Dec. when she had her scans at Sloan!  The results were all good and showed no evidence of disease at that time!  We were/are very grateful for the news and pray everyday it stays away and NEVER comes back!!! So needless to say we all had a very Merry Christmas and a Happy New Year!!!  In January Emalee went back to Sloan for more HAMA blood tests and we finally got a negative result which meant she was now eligible to go back in for her second round of 3F8 antibodies!  So before they would schedule a date, they decided they would like to test her one more time for the HAMA levels just because they were sorta borderline pos./neg and this time the results were positive, which meant she couldn’t get the 3F8!!!  UGH….so we waited again two more weeks and re-tested her and she is now officially HAMA negative and is scheduled to go back to Sloan on Feb. 19th to be admitted for round 2 of the antibodies!  I am pretty nervous about her getting the antibodies again because they were soooooo hard on her poor little body! The pain was just terrible to watch her go though, but it is what is best for her and she will get through it with everyones love and prayers!

On a really happy and exciting note….Emalee was able to begin Preschool in Jan. as well!  Her docs gave the OK, so we signed her back up at her old school that she was attending when she was diagnosed 2 years ago!!!  They have been so kind and welcoming to her there and made it a really easy transition and positive experience for her so far…..she just loves it~~~and we love seeing her going to school, learning new things and making new friends just like a typical 4 year old should be doing!!!  It is great!  Unfortunately she will be missing some time now with going back into the hospital next week, but I’m sure she will be anxious to get back as soon as possible!!!

Please keep Emalee in your prayers, esp. as the antibodies begin again next week and also my family on my father’s side as we bury my Gandfather….Emalee’s great grandfather…Pappy Jim that passed away last night!  God rest his soul!  Thanks so much and I will def. keep eveyone updated on the antibodies next week!!!

Feeling GREAT!

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!

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)

Cycle 1…DONE! Keep Praying!

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!

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!