It's been a busy year and keeping up with this is very hard but I'll just give a run down. Michael and Emaleigh are growing like weeds and are doing amazing developmentally. Their personalities are completely different and we're amazed at how they can have fun together and the next minute yelling at each other. Guess that's normal sibling rivalry.

Emaleigh is thankfully still in remission and we've tried a trial medicine to see if it would help Emaleigh's overgrowth. The medicine kept the overgrowth to a minimum but we've decided to go off of it for now to schedule another orthopedic surgery in November/December. Medically we've been watching in hopes that we wouldn't have to anything but her right foot just keeps growing wider and wider, so we knew it was a matter of time. Shoeing has become a nightmare and we just can't do much, so it's time to act now.

Emaleigh had a Gold Hope Photo Session. The Gold Hope Project is a non-profit org that brings photographers together to offer a free "magical" photo shoot for cancer patients and cancer survivors. Here is the link to some of her pictures: https://www.facebook.com/media/set/?set=a.10151750505031119.1073741829.756331118&type=1&l=42e2a02e04

We also just came back from Emaleigh's Make A Wish trip to Disney World where we stayed at Give Kids the World. We all had an amazing time and did not want to come home. https://www.facebook.com/media/set/?set=a.10151720257246119.1073741828.756331118&type=1&l=d3216bbd60

Emmie's story was also published in the Richmond Times - http://photo.blogs.timesdispatch.com/the-bravest-little-girl-i-know/

Will try to post another update sooner next time.

I'm sorry... It's been awhile - We've been surviving

My last post was around 11 months ago. I apologize. We've had a very rough year.

We had a wonderful 2nd birthday in October and an amazing time with our friends for Halloween last year... 2011. We actually left right around Halloween for Emaleigh's 2nd foot surgery.


After Emaleigh's 2nd foot surgery (toe amputations), during one of our routine ultrasounds, the doctors noticed tumors in Emaleigh left kidney. We managed to make it home for a week and then headed back to Cincinnati for an MRI and were told that Emaleigh actually had tumors in both kidneys. We headed home worried about what this meant. Were we talking about the big "C" word or hoped that we just dealing with cysts and strange overgrowth like many of these CLOVES kids have throughout their little bodies.
We made it home and headed back to Cincinnati a few days later for a right kidney biopsy. Emaleigh was amazing, sweet. loving, and kind with all of the poking and prodding while Michael was given very little time with mommy and daddy. We left the hospital unsure if we were dealing with cancer but knew it was a huge concern. We had a wonderful Christmas and thought this really was nothing until December 27th.

We headed back to Cincinnati to start our first dose of Chemotherapy. She had very early stages of bilateral Wilms tumor and we were devastated about more doctors, more drugs, more pain, a central line, bandages, no baths, no swimming, no hair, nausea, constipation, side effects, and no friends. This is not what a 2 year old should be doing. This was tough, tougher than I could ever explain.

Our first chemo session went off without a hitch. She did not get sick, we had a tough time getting the central (picc) line in but she made it! We headed home to spend some much needed time with Michael. All other weekly chemo visits (minus follow-ups) were done in Virginia at UVA. Our next chemo visit was tough, she had some reactions to the bandage and fought us tooth and nail with every dressing change BUT we became experts in a matter of hours with flushing that line.

The 3rd chemo visit, the day before or so, she started getting sick and then sicker and by the time of our appointment, they admitted her. She wouldn't eat or drink, her eyes were red and swollen and her counts dropped dangerously low (below 100 vs 2500). She was in the hospital for 5 days recovering.

Our next appointment we started noticing some major side effects of this drug. She had blisters in her mouth, she was chewing on her fingers, flicking her fingers, she had constipation, and hairloss. The doctor decided to reduce her level to 75% of the drug and we stayed on that dose for the remainder of her therapy with little or no side effects. Another drug was introduced every 3rd week which dropped counts and caused hairloss. Interestly enough, Emaleigh only lost some hair each appointment and did not lose all of it until the final dose.

By mid February, we found that the chemo was working. All of the massed in the right "smaller" kidney were gone. The large mass in the upper section of the left kidney was reduced by 25% but the mass at the bottom of the left kidney did not respond. This was expected since this was the mass that was biopsied.

By early April, our next 6 week evaluation in February was due and the MRI showed no masses in the right kidney but growth in both masses in the left kidney. We scheduled a right kidney nephrectomy for the following week, so back to Cincinnati we went, with Grama and Michael in tow. This surgery was tough for me, she was thirsty, so I wanted to give her ice chips (mom begged for ice when she was thirsty and we didnt do it - I felt guilty - so I was helping my kid this time around), I got in some trouble but she came off the suction and took some time to recover and get an appetite back. After a couple days we left the hospital and headed home after a day or 2 in the area.

We had 2 more chemo visits before we were finished and by Mid June we were done. Our last appointment, Chris had them remove her line and within a couple of weeks, we headed back to Cincinnati for our first MRI after finishing Chemo and found she was NED (no evidence of disease). We came back home and tried to have a good summer. The summer flew by but we had a chance to swim in the pool, go to our CLOVES conference and meet other friends like Emmie and learn more about what we're dealing with.

The end of August, we had a chance to head over to the UK and meet our friends Mandy Sellars and twin mom Tina. We also met with Dr. Semple to learn about his overgrowth research. He has been wonderful with responding to questions about Emaleigh.

I can't leave my little man Michael out. He has been doing wonderful and is starting to talk more and more. Emmie's the boss and tries to talk for him, so we've been trying to get him to ask for things. He's coming around. As far as Emmie attention, it's attention in his eyes but not attention that he would ever want. Yeah he's 2 and doesn't understand so we've been working with him to make sure he feels that he has mommy and daddy time too. We're working on it but it's tough.


We're excited for birthday number 3 that is coming up fast and continue to pray that cancer is not in our vocabulary ever again. She has enough challenges without cancer. In January, we're planning on placing them in a preschool, so we're looking around trying to find the perfect place.

Birthday number 2!

Wow, I meant to update the blog a few weeks ago. Yes, our little ones turned 2 on October 10th. Time Flies! We had a quiet party at home with the local family (grama & Granpa), the Rempfer Clan, and Uncle Buck, Courtney, and Logan. Emaleigh and Michael didnt seem to mind the small group. Of course the theme was.... you guessed it... Mickey Mouse

 

The festivities continued the following weekend with the McConnell clan and had a chance to go to a local farm and do the "corn maze" thing. I think Emaleigh and Michael loved the corn box the best. This was a sandbox with corn kernels instead. It was neat unless the ends of the corn poked you. No major injuries.

Last weekend was Jackson's birthday party at Romp n Roll, Emaleigh and Michael had a blast running around and playing with the other kids.

This weekend we have a fall festival at the local church and we're meeting up with our twin friends Libbie and Luke. Monday is Halloween. Emaleigh and Michael are going as Mickey and Minnie. We've tried on the costumes and they LOVE them. I'm super excited for Halloween.

We've been noticing a BIG change with their vocabulary. We know that Jean and her family are a big part of that. Emaleigh and Michael are both learning a lot from the older kids and they play well together.

Next month Emaleigh is scheduled for her 3rd surgery. This is an extensive orthopedic surgery to amputate her toes and metatarsals. This is our next step to help increase her quality of life. Her feet are very large for her age. Actually she wears the size that a 5 or 6 year old child would wear. To learn more about her condition and follow our progress in Cincinnati, follow her page on CaringBridge. www.caringbridge.org/visit/emaleighblankenship

Take Care!

We're almost 2!!

We had a great summer, it went by too fast but we managed to go the beach with friends and swim in our pool some. Emaleigh and Michael are reaching all of their milestones and it looks like they are on track for 2 year old toddlers.

Over the past few weeks we've noticed that Emaleigh and Michael still listen to us, we'll see how that goes over the next few weeks, since they are turning 2.

Michael has been doing wonderful developmentally but having some food issues lately and we've finally realized his issues are from his Capri Sun flavored waters. Apparently he has some digestion issues/allergies with NutraSweet. We've finally discontinued these and he is doing well. Poor guy. We think he still might be having problems with whole milk too, so in a couple of weeks we'll start introducing whole milk and see how he manages.

 Emaleigh has been doing well too. She's been amazing getting around, her drive and determination appears to be limitless. We're scheduled for surgery in November where they will be performing a transmetatarsal amputation (removal of toes and long foot bones) in both feet. She'll be in "non walking" casts for 6 weeks. This is going to be a really tough time for us and we're still discussing if this is the right time for her. The doctors recommend performing this surgery before the age of 3.

I'll be posting some pictures of their birthday  in a couple of weeks so check back. I'm also working on getting a great video of Emaleigh dancing on youtube. I'll post that soon.

A couple of cute Videos

Both Emaleigh and Michael are doing great! I'll post an update soon. I did want to post these video's now!

Michael Snorting: http://www.youtube.com/watch?v=AlERH4onv6w
Emmie trying to snap her fingers:

http://www.youtube.com/watch?v=f_wXwW-4HhQ

August - Where has the time gone?

We are doing absolutely wonderful. Mr Michael and Miss Emaleigh are growing like weeds and we love to see them grow and learn each day. These babies are our miracles and we cherish every moment!

Let's see - where do we pick up? Michael decided to escape from his crib, right after we lowered it 2 inches. He was sucessful, so within 2 days, they are BOTH in a toddler bed. They LOVE the freedom. I wont lie, the first night was pretty tough, it took about an hour of us going into the room and telling them it's night night time while laying them down in their beds, The next night was 45 minutes, then 35. We're still working on about 30 minutes but the room is safe so they can tucker themselves and fall asleep whereever they want. With that in mind, this is what we have seen this week:

They both are talking up a storm and repeating everything (we're trying to be careful). They are both running through the house and Emmie tries to keep up. Michael can drink milk again, so the allergy is gone thankfully!



Emaleigh has a surgery coming up in April to remove 1/2 of her feet and move tendons. All of the doctors recommend that this is the best thing for her right now. We'll have to manage other symptoms (right now... through surgery) as they become a problem in the future.

I finally caught Emmie on tape dancing again: http://www.youtube.com/watch?v=E3wzida4PQc (I'll post it below)



Chris and I have been super busy with the foundation and we hope to start fundraising soon.

With Love,
Adrienne

21 Months and I dont have babies any longer

I can't believe my little ones are 21 months old. It seems like yesterday they were snuggling with me. We have moved into the terrible 2's. Almost! Both Emmie and M are about 23 pounds and are really starting to get tall. We have competitions for mommy's lap and daddy's chair. It's cute until some little boy gets physical. Both are learning time-out and that seems to be working fairly well.

Vocabulary wise, it's amazing what they can say and I'm glad that I've been able to keep bad words to a minimum. Signing is good and Emmie is still doing great and moving along. M isn't very interested but we keep trying. Grama has him counting to 5 (ok...1,2,3), we'll have to work with Em on that.

M has really been wrestling lately, which is great that he wants to roll around with me BUT he is head butting me constantly, so I'll have to work with him on that because it kinda hurts.

We're doing better in the pool, it did help that the pool was 86 degrees the other day. Em and M had a great time just floating around with Grama, Mommy, and daddy. I think this weekend Em and M learned how to kick their feet, finally!

I try to play hide and seek with them every night, M is a great seeker and Em has learned to hide, it's usually the same place everytime but cute that she'll sit in the corner and wait for me.

Last night I started reading a book before bed. They were super excited to see mommy "playing" with the books. I think I was handed 5 books and then each of them grabbed a book and flipped through pages like mommy did. It was very sweet.

M is back to regular milk as of today, I hope his cow milk protein allergy is gone now. We had an episode in Cincinnati, where a full Pediasure caused hives all over his body. The good news is that he wasn't itchy. After some benedryl for a couple of days and Rice milk for 4 weeks, we hope to be back to normal.

Em's surgery is tentatively set for November 12th in Cincinnati. I'll have to follow up with them in a couple of weeks, to see how that date works out. She'll have all of her toes and metatarsals amputated and her tendons will be moved. Recovery time for this surgery is 2 to 3 months and I have no idea of how long we'll be in Cincinnati or if we can follow up with doctors here. I'm a little nervous about this surgery, not only because it's her 3rd s but it's going to be tough on her. I'm not sure how to keep her from walking or if she'll have walking casts. I just dont know, so I'm putting together a list of additional questions for Dr. McCarthy and Azizkhan. We know that we have to do this surgery sooner than later, it was very clear by both teams in Cincinnati and Boston that the surgery needs to happen before the age of 3 or 4. So that's where we are. I have nervous energy already!  We'll start talking about her right buttock when this surgery is behind us.