Being Admitted to Hospital Tomorrow

Well Dr Gowda viewed the photos emailed to him and saw that the back of Emily's leg looks worse and his recommendation is for Emily to be admitted tomorrow for a biopsy! Because her ANC is low she will be there a few days on antibiotics to make sure she doesn't get an infection! The biopsy is to look to see what is going on and if this is truly progression!

Please send all your positive mojo right now that this is nothing and we can keep on trucking! We are very worried about what this is! We are also worried that she has no idea that she will be admitted to the hospital tomorrow!

MIBG Results 2-22-12

I know everyone is looking for an update on how Emily's scans turned out...we were both very nervous about the results and especially with Emily complaining of pain in her right hip! The results came back with written terms: " whole body images demonstrate multiple foci of increased tracer uptake in the following areas: the right side of the skull, the lumbar spine, pelvic bones bilaterally, proximal and mid shaft of the femurs bilaterally. Compared to the prior study of 1/10/2012 , the intensity of some lesions has decreased." This means that Emily's scans are stable and some of the lesions are not as bright. Dr Mosse seemed surprised by the results but happy.

This means Emily is not progressing and is not regressing but the intensity of some are lighter. While there is nothing to celebrate as of yet, we are ok with the results and just happy to have Emily here with us and enjoying life.

So, what's next...we still have a long road ahead of us...we don't have an end in sight (I asked) and what is next is low dose chemo. Low dose chemo until something else comes open. Currently Emily does not qualify for any trials, mainly because she is not progressing and because they don't have any clinical trials that are open. So we are on a bridge right now... Low dose chemo it is... Emily will start on a antibiotic tomorrow that is to help with the major side effect which is diarrhea and then come Monday she will start to different chemos at home. Irinotecan and temozolomide. Emily will do two rounds of this which is 21 days per cycle. So the first 5 days will be an oral liquid which is the irinotecan (but we are awaiting approval from the insurance on this one since they normally do it by IV ...if not approved then Emily will have to go to the hospital for two weeks everyday Monday thru Friday to receive the irinotecan) and the temozolomide which is in pill form. After the 5 days she will have 2 weeks of of no chemo and then start the second round. After the second round we will go back which is approximately 45 days for scans to see if the chemo is working and re-evaluate.

We are still nervous about what if this does not work... Dr Mosse said this works for some and they are on it for years but then others it does not work. We asked about hair loss and she said no but on the side effects it says the most common effects are decrease in number if red and white blood cells and platelets made in bone marrow, diarrhea and hair loss. So we are going to question that. Emily will only have to go once a week at our home hospital for count checks.

Tomorrow is surgery day...removal of broviac line and insertion of port. This will work out well with the chemo that Emily is being put on that it will not need to be accessed as much. So ready for emily to be able to enjoy the pool, taking a bath and just normal things and not be left out of the summer activities...this is why our hope would be to sometime take the girls to the great wolf lodge in Williamsburg!!! She will also have her bone marrows checked for disease while she is under tomorrow. She will not be inpatient but we have to be around for any problems and also to get the chemo to take home with us. They want the chemo to start Monday.

Doug and I are still talking about getting a second opinion, if you will, from Sholler in michigan on this and if we are going in the right direction. Doug and I want to do what is right for emily and rid her of this horrible disease and move forward. We also asked Mosse about Sloan but she didnt feel it was a good option for Emily right now.

So we charge in...we move forward... Ok with the results but our goal is still to be Ned... The thought of having to keep Emily on a chemo for long term just to not progress is not something we want...no end in sight, but we move forward and just happy she is happy and not in any pain....

Will update after surgery tomorrow on how she is doing.

We Are Here

 

Emily slept for 3 hours on the way and was so happy last night!

 So, we made it to New Jersey on Sunday evening. We ended up leaving later than we had planned to leave on Sunday and then half an hour into our ride, we realized we left our gift cards at home, and had to turn around and get them. We ended up making it to New Jersey to the campground by 7PM. We get to the campground and I run inside to get the site and pay and was shocked when she said your friend took care of it in full. I was like, what who? So a huge Thank you goes out to Sue for taking care of our week here at the campground. It means so much!


We miss the girls already, Jessie is with her dad and Brianna is with my parents. So we are missing them already! Also it snowed in VA (and we never get snow) and no snow here in Jersey/Philly area. Both of the girls got to have some snow time.

Here we are, it is Monday night at 250AM, and I have worked for the night...Emily and Doug are both asleep and here I am awake, wide awake (which is weird for me when not being in the hospital with Emily)...Emily had a visit today at CHOP for a consulation on the broviac removal / port insertion and with Anesthesia Resource Center and then the MIBG Injection. Emily doesn't really know that she will have the broviac removed and the port placed, but I somewhat think she does. We haven't talked much about it, mainly because she will get anxiety about the surgery! We are both nervous about this, obviously because of surgery but also just because of how Emily will be when it has to be accessed. While the best part of it will be, she will not have to have dressing changes and will be able to go swimming and go to school and not worry about her line being pulled. 14 months of not being able to go all the way under water, it will definitly be different. Dr Mattei did indicate that it will be sore for a few days, but then after that she would be fine. Our hope is to sometime take the girls to Great Wolf Lodge in Williamsburg, VA and let them all have a blast. After we left the hospital we came back and let Emily feed the ducks, she was a bit nervous about it, afraid they would follow her, but mainly watched us feed the ducks.

She has been very irritable lately and gets upset easily! Its heartbreaking to see her cry so easily over something that we would not have imagined her to cry about or that she wouldn't have cried about just 2 short weeks ago. Today while waiting for the MIBG Injection she wanted to play with a little girl, well the little girl left and went back to her mom and Emily cried, and it came out of nowhere and Doug picked her up and tried to get her mind off of it. The little girl realized it and then asked Emily to come and play and then Emily was fine. It was heartbreaking to watch your own child cry about her feelings being hurt! She still comments about pain in her hip when you touch it, but is walking/running around with no problem.

Tomomorrow is MIBG day, Emily will have her scan at 10AM, and I am beyond nervous and scared about this day and I know Doug is too! Emily will rock it, like she always does and be such a big girl and sit still so she does not have to have the "white stuff". I have some major scanxiety going on right now but still trying to keep up the hope, Im thinking that is why I am still awake, because my mind won't shut off! The hardest part is also not knowing what is coming next, what the treatment looks like or anything and where tomorrow will bring us. Please send us lots of love, thoughts and "HOPE" as we go through these next few days.

A big huge thank you to Burkeville Baptist Church for putting on a fundraiser for our family and to all of our family and friends who were part of such an amazing event. We have no idea what this next year will bring us with treatment, but as long as all of our family is together is all that matters.

Jessie and Brianna, I miss and love you girls both so much! Hope you both have a good week!

Make sure you hug and kiss your kids good night and tell them how much you love them!!

4 Weeks Post MIBG Therapy Round 2

Emily says "Happy early Valentines Day!"

So, I have made a lot of updates via Facebook, so I am going to copy those and paste them here and then update the rest of the information!

February 2nd: Today is day 10 after stem cell infusion and we are still waiting for her platelets to recover! Her ANC and WBC are starting to go up so we know platelets are last and longest to recover so hopefully they start to go up soon. She will be back in clinic to check!

February 5th: Emily has clinic in the morning!! Tomorrow will be 14 days since her stem cell infusion, please send lots of love and thoughts for her platelets to be up and she won't need a transfusion. Dr. Sholler was looking over all of Emily's paperwork this past weekend and we have a call with her tomorrow evening!

February 7th: Yesterday was the first time since we have been home from MIBG therapy that Emily did not need platelets! She was getting them twice a week and yesterday they were at 35! Anything under 20 they transfuse! This is great and we hope they continue to go up! We have clinic Thursday morning to see where things are! I hope to update more tonight! Thank you everyone!!

February 8th: Emily had clinic in the morning and we will see where her counts are! Hoping that no transfusions are needed and just a quick visit!

February 9th: This is our Emily with her platelets at 55 today! Do you know what that means? It means her stem cells worked and it means she will be eligible for other trials to get rid of this horrible beast NB! Woo hoo!

Thankfully Emily's platelets have recovered and we have finally gotten over 55, in order to qualify for any other trials Emily has to have 50.. We finally finally feel a huge sense of relief and that we can breath again because this is what was holding us back to be eligible for anything else.

We did talk with Dr Sholler on Monday evening. Sholler is an amazing woman and what I can tell you all that she has given us "HOPE" That is right, she has given us "HOPE".

So from here, we have one week left at home and then on Sunday, February 18th we head to Philly to stay at the campground that we previously stayed at, where there are some amazing people there! Monday Emily will have her MIBG injection along with talking with Dr. Mattei about her pending surgery on Thursday of removing her broviac/hickman line and having the central line placed and also having her bone marrow biopsy done. Tuesday Emily has her MIBG scan done (scanxiety is already here) and then we meet with Mosse on Wednesday. Right now we are keeping everything open and taking in what trials that CHOP has to offer and also we know what Sholler has to offer us. Sholler has all of our information and insurance information, so should Emily need to go there we will. We have no idea what to expect, because we have no plans, however we can breath easier knowing that her platelets are recovering and we will have options available to us.

We did have her HMA/VMA levels checked, and Dr. Gowda said there is only a small improvement from July, but its better than nothing, but they are still a bit high. These are not valid tests to go by, but it does help to see where things are.

So Emily is doing great right now. She is happy, she is eating, she is going to a school on Fridays that is through the ASK Clinic from 930 to 1230 as long as her ANC stays ok, so we are happy with that.

This is really quick tonight because I really just wanted to update, but I want to watch a movie with the hubby tonight. We have lots of HOPE, this is what matters.

Make sure you hug and kiss your kids and tell them how much you love them.

Thursday, June 2, 2011 (Day of Surgery and After)

I know this update comes to you all late, and I apologize for that, however life has been very busy and with limited access to internet service except through my iPhone or iPad makes it hard.

Wednesday and Thursday was a pretty rough day for Doug and I! We never told Emily what she was going to have to go through the next day because we knew she would be upset about the stay at the hospital and would cry about it and we just wanted her to be happy up until the time she had to go. So, we told her that we were going to the hospital but left it at that. Our ride to the Ronald McDonald house was interested, the GPS took us through the worst part of Philly and the longer we were driving through the area, the more uncomfortable we got. The Ronald McDonald (RMH) was beautiful and amazing however it was the prettiest place in the worst part of town. It also wasnt the RMH that was connected to CHOP, it was connected to the other hospital in the area. Emily was crying and didnt want to be there, all she wanted was to get something to eat, so after arriving there at 810PM and checking the place out and hearing Emily more upset of the time we were there, we decided not to stay there and find a hotel. We knew once we left RMH we wouldn’t be able to come back, because they only bring people in up until 8PM, but what we didnt know was just how expensive the hotels were in the area. However we found a place to stay, stopped to eat dinner at Whole Foods and made it a night at the hotel for only 10 hours. A really good friend of the family, Regina (more like a sister to Doug, since he grew up with her) came out that night as well and met us at the hotel and spent the next day with us.

That night Doug or I didnt sleep well at all, but honestly who would knowing that their child would have to go through a major surgery the next day. We got up and got ready and after taking a shower, I walked into the bathroom and fell and my toe got caught underneath the door. From the shower the water sprayed all over the floor and it was wet. Needless to say on a day that was really important, I broke my toe. NICE. And I woke up Emily from crying out about my foot. Emily did very well about having to get up and get ready.



Emily loving on Mommy!



Emily loving on Daddy!

That morning we were beyond nervous and scared. However I can tell you all that Doug and I definitely knew we chose the right place to take Emily and have surgery. Dr Mattei is an amazing Doctor and we could tell this before the surgery was even done. His bedside manner was not that of a doctor, it was of a very compassionate man who looked at each child as if they were his own. I cant tell you what that means to us and for any other parent. He met us back at the room as soon as Emily was taken to the room and started to talk to us and tell us what to expect, the anesthesia doctors came in and also did the same. While we were waiting Emily fell asleep on me which actually worked out nicely. Because they normally give the kids giggle juice and then they give them an iv in the arm but they didn't have to since she was asleep.  After I laid her down and she was out, Doug and I both kissed her as the tears were rolling down our faces! This day reminded me back on December 23rd when Emily was going through her very first surgery and we cried because we didn’t want them to take her. The anesthesiologist looked at both Doug and I and said she would be well taken care of...we both cried and held onto each other for a minute and then got ourselves together and then came out to meet up with Regina.  We left Emily at at 845 AM and tried to keep our minds on the task at hand. We received our first update at about 1030AM, we were told that Dr Mattei had just started working on Emily about 950AM and so far she was doing great, she wasn't having any problems.  The IV's were placed in both of her hands with no problems and she was doing great.  She had to receive both platelets and blood because they were both low, but her WBC was still great.  She was not eligible to get the epidural since her platelets were so low and it could cause problems, so they gave her morphine. Doug and I both worried about her and worried about the recovery and very worried she would be mad that we didn't tell her about this. At 1110AM, Dr Mattei came walking through the doors and said, "we removed all of the tumor and Emily is doing great.  We are now closing the cut back up with the stiches underneath and using the glue. Emily was also a bit dehydrated when she came back to them, so they were going to keep an eye on that"  Doug and I were both very happy to hear they were able to remove it all, and everything went well.  He did tell us that the tumor was a little difficult to remove off of the kidney and the aerta and that it looked like the tumor was very stiff because it appeared it was dying off.  That was the first we had heard it was even touching the kidney, so that was news to us.  Dr. Mattei did remove the adrenal gland, but we had already known he was going to do so. That wait for them to call us back to Emily, seemed like another eternity.  Finally at 1230PM, we were called back to see her.  We couldn't wait.  

We both cried when we saw her, not because she didn't look good, but because knowing what she had just gone through and just wanting to talk with her.  The nurse was talking us through everything and letting us know her numbers and everything looked great.  They said they would be moving Emily to a single room on the Surgery Inpatient.

Emily slept most of the day Thursday.  When we talked to her she would hear us and answer by nodding her head or whispering, but that was really it.  Emily was laying on her side when we came to her and we had to move her to her back since she had been laying on her side for so long, and I move her to her back.  She had IV's in both of her arms and the frustrating thing about that is that she just wanted to rub my arm and couldn't. I even tried to the bandage off thinking it would help, but the IV was in the way and she was afraid it would hurt.  She she would have to tilt her arm and could only touch with her fingers.  

It was a hard day for Doug and I, I didn't answer any phone calls because I just felt crummy and cried off and on all day.  I would look at Emily and cry and then Doug would remind me that they got it all and she is in a great hospital and they are taking great care of her. It was just really hard to see her in pain when she would have to move around or even be scared when the doctors would come and have to pull up her shirt and look at the incision.  She would flip out and get scared and cry out, but then would realize they are not going to touch her. 

Friday she was still very sore, but much more awake.  She actually woke me up early in the morning and asked me why they put two IV's in her arms.  We laid on her bed and talked for about an hour and then she wanted Daddy to come and lay with her.  It was cute.  So he layed with her and then about an hour later, she wanted mommy to come back and lay with her.  Friday morning she had to actually sit up and at one point when they took the foley out she would need to get up and go potty.  Emily sat up with Doug and mines assistance and did amazing just like she did before back in December.  We only gave her the medicine that was like Tylenol, but no Morphine and we knew we would use it if we needed it.  But she didn't appear to show that she needed it.  

I have been holding this post forever trying to get it all finished, so I thought I would go ahead and post this and post the rest later.  I still have more to talk about.  Emily is doing great though and she is home and resting and recovering.  Emily is one strong and amazing kid, Doug and I are so proud of her.  More to come later.  

Surgery Update

Emily went back about 845AM and surgery started at 950 AM, at this point we are just waiting.


Please continue to send all your love and thoughts. Dad and I are both beside ourselves. Just wanting the time to pass quickly so we can see her.

Mom

Wednesday, May 25, 2011 (day before surgery)

Mondays visit to CHOP was comforting to Doug and I...meaning we definitely feel like we made the right decision on taking Emily to Dr Mattei! We arrived late a little worried that we would have missed him since he was flying out, but he was still there! We were able to meet with him and he walk us through the surgery! He seems to feel confident that he can remove all of the tumor and while there he will look at the lymph nodes as well just to make sure that there isn't anything there. He did state he was 99% sure he would be removing the adrenal gland because most oncologists want it gone so there is hopefully not a chance of relapsing! We also met with the anesthesia area and the nurse practitioner came to meet with us and go over questions that they had and questions we had! Then we went to the oncology department to get Emilys counts checked! By time we finished all that it was 430pm! We all still needed to eat, so afterwards off to Whole Foods! Obviously after that it was a long ride back to Virginia! Brianna came with us so it was a bit overwhelming because she was fussy here and there but overall Doug and I feel like we have made the right decision on taking Emily to CHOP for surgery!

Yesterday we prepared for getting ready for our trip to Philly! We checked with Ronald McDonald house and were told we would need to call about 10am to see if they would have any rooms for us to stay in! That makes it hard because we were already debating on if we should bring the camper! There was so much that needed to be done , I was able to prep a few meals, make dinner, wash clothes and start packing!  Doug and I have been exhausted, so exhausted mentally, physically and emotional! The past few nights we have just passed out! Last night we were laying down in the living room and fell asleep until 630 this morning!

Today and right now we are heading to the Ronald McDonald house to stay the night and then be at the hospital at 715 am for surgery!  We are both nervous and anxious about the next day ahead of us but also ready to get this part of this protocol over!  We are very thankful to my dad who is taking care of Brianna until Saturday for us and for Regina who is going to meet us at tonight and be there for us for surgery to support us! It really means a lot to us! 

Doug and I are asking that you send lots of love and thoughts our way and be thinking of Emily during this time! It really means a lot to us! I will try to update tomorrow once Emily is doing well! 

Remember to love and kiss your children as often as possible!

Monday, May 23, 2011

This will be the 3rd time trying to get this entry in hopefully I won't accidentily hit the cancel button again.

Friday morning Emily had count checks at the clinic! It was great to see her counts went from .3 to 1.6 WBC and she was just a little but greater than 1000 for her ANC! So Dr Gowda okayed her for surgery!

This past weekend we enjoyed the weekend away...away from our house and away from the hospital in our camper at a campground! We headed to VA Beach after work to take some time away from our new "normalcy" and just have a good time! So we let the girls ride bikes, play ball and just have fun! It was different to go camping and the pool now be open and we didn't get in the pool. However no one made mention of it! We drove the golf cart around the campground and looked at campers and just had a good time! Saturday night we took the girls over to the gameroom to play some games and right outside the door of the gameroom they had a DJ and a party for all the campers! Emily was having a great time playing games, dancing and smiling and it was great to see her smile! Jessie and Brianna were having a good time as well so it was nice to get that time away! Emily even talked to auntie Tricia and uncle Glenn on the phone, which it has been a while since she has done that! We were thankful for that bit of time together as a family away from hospital!

Today we are back to reality away from camping and driving to CHOP! Emily has pre-op today and we have done nothing but hit traffic along the way which means we will be late! I have called the nurse to see if we can move the appointment to a couple hours later but I haven't heard back at this time! Today is a day that we prepare for what is to come with surgery and I can't say that I or Doug is not nervous about it but we also want to get this part done and over with! It's also something that we haven't told Emily about because all it will do is get her scared and cry! She is done with all of this and so are we...but we also want to get all of this out and hope that it never comes back!

We want to continue to thank our amazing community and family and friends who walk along with us! Thanks to Melissa for working on the auction online on facebook so that we can have a swingset for the girls, thankful to friends who do things to help and thankful to organic meals that are brought from time to time and thankful to family in Massachusetts who is working on a fundraiser in Doug's hometown! It is amazing how family and friends pickup to help during a time like this and we can't say thank you enough, but it does mean a lot to us! So a huge thank you!

Well I made it through what I wanted to get out...my hope is to update more tonight after we meet with Dr. Mattei and get the answers to what is to come and after we make the haul back from Philly!