Sunday, May 31, 2009

5 More Days!

Let the countdown begin! 5 more days until those tubies are gone! I have this sinking feeling that something is going to get in our way of having this surgery. Perhaps the illness that just won't leave us alone? I'm sick again and now Eli spiked a fever again after dinner. He wouldn't eat and just wanted to be in his bed. It is like it has recycled itself and is starting all over again! I'm praying that God will restore health to all of us by the end of the week. I well up with tears just thinking about seeing Brady whole again!!!

This week's Brady plan: We will go to PT on Tuesday and Thursday. Also on Thursday I have to call to see what time to be at the hospital on Friday for surgery. When I made our appointment they thought he would go in later in the morning. Friday night is the Festival of Hope at Batavia Downs. I've been working on my speech that I will give that night. I'm basically just telling Brady's story and trying to use his experience to inspire hope in others (not too hard of a job!) Saturday the 6 of us are going to walk in the Walk 4 Life to raise money for All Babies Cherished. Sunday we have plans to visit some friends of ours. Looking forward to a great week!

Please keep Brady in your prayers this week! We continue to wait for the final histology reports from Sloan, for Dr. L's review of his scans, and of course for the upcoming surgery. Even though things have seemingly calmed down, this fight is far from over. I have to remind myself everday to continue to be a vigiliant prayer warrior on Brady's behalf.

Saturday, May 30, 2009

Spoiled for a Day

Ahhh yes, we are back. Back from a restful weekend, great food, relaxing, sleeping in...

We had a great time at Geneva on the Lake. A one-night-getaway is our annual anniversary gift from my in laws. We have been to some great places over the years, but this one ranks up there among the best! There was gorgeous weather both days and we were able to take our time getting there and coming home, stopping for lunch both days and doing some shopping. Thank you Ron, Sandy, and Mom for sending us away and taking care of the cherubs while we were gone!

Here are some pictures:
We had lunch here on Friday

These are a few shots from Geneva on the Lake

We got to take a private boat ride (private because no one else showed up!). Hey--it was free! The "captain" (20 something guy named John who also mowed the lawns) was terrific and showed us some sights including Belhurst Castle. We ended up driving there today and checking out their gift shop.

My favorite picture is this one of my "fruit martini" at breakfast! Delicious fresh fruit...yum!

I just thought of my new dreamjob: Blog reviewer of getaway destinations!

The kids are all starting to feel better, even though runny noses still abound! Matt and I are pretty sure we are getting sick again, we'll see. Our goal is to get everyone back to 100% so that Brady's surgery will happen as scheduled for Friday.

One more reminder: It's not to late to sponsor my friend Laura who is raising money for Golisano Children's Hospital in honor of Brady. To help with this worthy cause CLICK HERE

Thursday, May 28, 2009

Get Me Out of Here!

The 4th and final Williams monkey has succumb to the ear infection trend (well, at least I think he has). Brady woke up at 12:45am crying, very hot, and telling me to "kiss his boo boo ear." He was up several times throughout the night, totally unlike him. I decided that since the doctor had offered the antibiotic as a "just in case" measure earlier in the day, that I would go ahead and start him on it in the middle of the night. I spoke with our doctor (we saw another doctor at the appointment with Brady and Cara) later today and she wasn't too thrilled about giving him antibiotic without seeing him, but she agreed to go ahead with it. Eli is completely back to normal and Cara is doing much better. Allie is having a really hard time sleeping, is very stuffy, and has a bad cough. She smiled a lot today though and seemed a little less fussy. Brady is doing okay, but I can tell he doesn't feel well overall. My refrigerator could pass as a pharmacy right now...4 bottles of antibiotic and about 12 vials of Hep-Vanco, along with 4 drawers of medical supplies in my kitchen.

Please be praying that all the kids will feel better soon. We need to get rid of this illness so that Brady can have his surgery next Friday! I am in the beginning stages of planning a "Bye Bye Tubies" party for Saturday night:)

The reason for the title of my post is this...I'll be taking tomorrow night off! Matt and I are headed away for a 1 night belated anniversary getaway. My mom and Matt's parents will be holding down the fort. Please pray for them too! We are a little uneasy about leaving the kids not feeling well, but honestly have been couting down the minutes until we can get out of here. We totally need a 36 hour break from our world. Any guesses where we are going?


Wednesday, May 27, 2009

Another Day, Another Antibiotic

My kids really are quite healthy, other than the obvious. I'm telling you, we have only had one little cold in the fall and the stomach bug in January. Now in the past two weeks...YIKES!

So Allie was really fussy and not doing well last night. Matt finally got her to sleep and she did pretty well in the night. Today she cried most of the day, and I'm not sure if the antibiotics have kicked in yet. Mid morning Cara started acting uncharacteristically grouchy and was scratching at her ear. Here we go! Brady was also coughing a lot, so I called the doctor and got an appointment for 1:10 (have a mentioned that the doctor is 45 minutes away?) It was our choice to switch to this new office and we do love it, but weeks like these when we are driving back and forth with sick kids are tough! The kids were great at the doctor! As she was looking in Brady's ear and nose she would tell him that she saw a rooster or cow in his ear and then make the appropriate animal noise. I about fell off my chair when she finished looking in Brady's nose and said "All done" to which he replied "Quack!" Ha!

The verdict is that Cara has an ear infection and Brady has a stuffy nose and cough. We debated about whether or not to give him an antibiotic just assuming that he may also be developing something. We discussed the upcoming surgery and how anesthesia will not go ahead with the surgery if he is sick. In the end we decided to wait and see. I hate to put more into his little body than necessary. I can't imagine the toxicity going on in there as it is!

The rest of the day went on as you can expect...crying, nose wiping, Tylenol, crying, nose wiping, Tylenol... I'm so glad my mom had today off of work! Needless to say I canceled PT for tomorrow. Selfishly I just don't want to drive to Rochester again this week, and because I think we all just need to rest and hibernate tomorrow!

I wanted to let you know some exciting news! I will be speaking at the 15th Annual Festival of Hope benefiting Genesee Cancer Assistance Inc. The event takes place Friday June 5th starting at 4pm at Batavia Downs. There are many activities for the whole family all to benefit a great organization that helps local families affected by cancer. I'm scheduled to speak sometime around 8 or 8:30. I might even be singing(I'm way more comfortable singing than talking in front of a group!) My goal is to tell our story and raise awareness about pediatric cancer. I have a lot of work to do in preparation for this:) I continue to stand in awe of the ways in which God is using Brady to touch so many! I'm so blessed to be his mommy!

Tuesday, May 26, 2009

What was I saying about enjoying driving?

It figures that I would say yesterday how I enjoyed driving Brady to PT two times a week because I get all of that "thinking time." Today I spent 5 hours in the car! I took Brady to PT this morning and he had another great session! Linda, the PT, is doing a great job of taking a close look at what skills Brady is lacking and how to work specifically on improving those areas. We have determined that his left leg is quiet a bit weaker than the right. It's hard to know if this is a permanent neurologic injury due to the tumor that was compressing his spinal cord, or if he will be able to recover and build up his strength so that his gait is completely normal one day. Only time will tell, but I know Brady can do it, and I know for SURE God can do it!

After our drive home the day carried on as usual...then after nap time Grandma Sandy and I noticed that Allie was really grouchy. She rarely cries, but today she was just crying terribly and seemed to be in pain. After trying to soothe her for a few hours, we decided that maybe she had developed an ear infection since she had the family cold last week. I got a late appointment at the doctor for 7:30. But by dinner time at 5:30 she was crying so hard and was totally exhausted. I decided to pack her up and leave at 5:30 and just drive! She fell asleep and I drove around until about 6:45. I showed up early to the appointment and got in by 7:15. Sure enough, she has an ear infection. I dropped her off at home and then drove to get her antibiotic. Finally we are all home and hopefully she will start feeling better tomorrow! Poor's terrible to see my happy girl so sad!

I think I've had enough driving now :) Glad to be home in my bed!

Just thought of a few more Brady updates: His surgery will be June luck at moving up the date. The scans and reports arrived in NY today and have been passed on to Dr. to review. My new contact person at Sloan is great. She followed up on my concerns regarding the histology results we are waiting for. She isn't sure why the results aren't in and has asked that the tests be resubmitted. That's all for now!

Monday, May 25, 2009

Memorable Memorial Day

Could we have asked for a more beautiful Memorial weekend in western NY? Today we had a great time at Ontario Beach Park in Rochester. We spent some great time with my mom, my brother, and his family. Watching our 6 kids 2 and under is such a trip! We kept saying that they are like a little toddler gang and that we need to come up with a name for them:) I couldn't help but be blessed by the sunshine today and felt like God is using these sunny days to help me see the hope of brighter days ahead for our family! It was truly awesome to see Brady walking around with the rest of the crew. He chased bubbles, he played parachute, he watched Uncle Andy fly a kite, and he just walked all over that park!!!

I just thought of a name...The 6 Pack Gang. Here they are now...left to right Natalie (sleeping in the back of the stroller)

Tomorrow begins our weekly routine. Brady and I will leave at 8:30am for PT. He is too funny...when I asked him where we were going tomorrow he said, "PT with Linda!" I'm so glad he likes going! I have to admit that I really like my 45 minute ride to and from PT too! All that quiet thinking time, what a luxury!

I wanted to share some exciting news! I'm going to be doing some writing for a few blogs in the next few weeks. Today I have an article featured on my new friend Ginny's site called Make a Difference to One. You can read my article by CLICKING HERE and scrolling down.
In the next few weeks I'll be writing an article about Neuroblastoma and advocating for your child's health. I'll share that link when it is up! It's so cool how God opens new doors.

Sunday, May 24, 2009

Happy Memorial Day Everyone!

We are so grateful for our great country and the men and women who serve to protect us all!

Saturday, May 23, 2009

Beach Day

We got our minivan even more full today when all 6 of us piled in and traveled to see Grandma and Grandpa at their cottage on Sunset Bay. So, it takes about 1 1/2 hours to get there and the kids did great for the first hour. But the last 30 minutes involved a lot of one kid reaCHing over to the kid next to them. It sounded something like this:
Cara: "ehhhhh!"
Brady: "mommy????"
Eli: "NO NO CARA!"
Cara: "ehhhhhh! (followed by several minutes of crying and pouting)
Daddy: I can pull this car over you know! (ha!!!!)

I once heard of a triplet mom who put sheets of foam board in between the seats to separate the kids from each other....hmmmm....

The kids loved being at the lake. We were only there from about 11-2 but that was just enough for all of us:) As always, Allie was the best baby ever. She had a great time sitting in the shade with mommy watching Eli, Cara, and Brady explore. And yes, our hero did a lot of walking, even though the ground was unsteady and the sand was difficult to navigate!

I'm excited to share with you that our friend Laura (remember our great photographer) is raising money in honor of Brady to support Golisano Children's Hospital at Strong. They have an annual walk to raise money every year at the end of May. She has from now until May 30th to meet her goal of $1,000. Strong Hospital has played a very important role in our family! The triplets were born there and spent two weeks in the NICU and received fantastic care. Of course Brady has been inpatient there several times and had his first emergency surgery there. We are going to start off the giving and make a donation in honor of Brady and all of the wonderful people who have given so generously to our family in the last 4 months. If you would like to make a donation, please CLICK HERE

Friday, May 22, 2009

Doctor Visit, New Carseats, and Ice Cream!

We had our first chance to have Eli, Cara, and Brady all in the van at the same time today in their new car seats. We needed to get more narrow seats so that we could fit three across the back of the van. Previously we had two in the back and then Allie in one seat and Cara in the other, making NO room to maneuver in the van. With this new configuration we take out one of the captain's chairs and have all that space. Here is a picture of my three back-row Joes!

All three had their two year appointments today with the new pediatrician. Things didn't go quite as well as I had hoped, but I'm sure the new doctor was feeling a little overwhelmed with Brady's health history in the last few months. She checked out his Broviac and isn't sure it is infected. She did offer to call our oncologist and see what was happening as far as getting a sooner surgery date. Before we left, she came and told us that our NP at Strong is working on it and will call us Tuesday. In the meantime she gave me betadine swabs to use when cleaning his site next week. I read between the lines here and took that to mean that his surgery date probably won't be moving up. The other surprising news is that all 3 kids have actually lost weight in recent months. I have no explanation for this, but boy did it make a momma feel bad! We are taking them back in 3 months to check their weights.
Eli and Cara got shots today, but did a great job!

To add a little fun to our day, we took the kids to Abbotts for ice cream after the appointment. I'm somewhat embarrassed to say that they have never had ice cream out of a was the day! They had a great time!
I love this picture! Notice the drip on Brady's chin, Eli's missing shoe, and the look of pure love on Cara's face as she stares at her cone!

Thursday, May 21, 2009

Great news!

I'm so excited to share some great test results with you! We called today and got Brady's HVA and VMA levels back (urine marker for NB). His HVA is 17.9 (it was 151 back in Feb) and his VMA is 14.3 (it was 87.1 in Feb)!!! Both levels are well within normal limits. This is fantastic news and tells us that obviously there is far less NB in Brady's body. What remains is so small that it isn't even registering in his urine. This is another small step of reassurance for us. We will repeat this test in 3 weeks.

On to the doesn't look good. The site is red and irritated and it appears that there may be some discharge. Matt called this morning and we didn't hear back, so I called at 3pm. The NP said that we should bring him into the clinic to have it swabbed and tested for infection (which will take days!). I told her that we have an appt with our pediatrician tomorrow and that I will have her look at it and give us her opinion. I'm hoping to have her as an ally in advocating for removing it ASAP. I think it is ridiculous to speculate about whether or not it is infected. Let's assume it is and get it out now! Why take off the dressing, swab the site, clean the site, and apply another dressing while we wait for test results! It just seems insane to do that at this point. The NP is calling the surgical NP tomorrow to see if there is a way to get it out sooner. Frustrating...

The scans and reports are on their way to Sloan today. I sent them out myself and will follow up with my new contact there on Tuesday morning.

Brady had another great day at PT. He bops around the PT room, walking the whole time. He is becoming so bossy these days, telling us just what he wants to do when he wants to do it! He is interacting well with Linda the new PT and we are both so amazed at what he can do. Certainly his crawling days are well behind him. God is so good! I definitely think it is time for another Brady walking video to be posted on the blog. I'll get Matt to work on it over the weekend. I need to share my little miracle with all of you!

Wednesday, May 20, 2009

Forging Ahead

Okay, I continued my pity party for a while today. My frustration, fear, and fatigue have just reached a point where I guess I needed to let it out and then move on. Thank goodness for a few emails I received today and for the encouraging messages left by everyone on the blog yesterday. I got it together and tried to get something accomplished today. I sent an email to a secretary of Dr. Laquaglia at Sloan and asked her how to best get the scans and radiology reports to him so that he can review them. I also wanted to know why we still haven't heard regarding the final histology reports. Remember we are still waiting to see if the tumor that was removed still shows that Brady is in the intermediate risk category with favorable histology. This is a BIG piece of information as to how well Brady will do long term. The person I emailed returned my message within an hour telling me exactly how to send the scans to Dr. L and she also contacted the NB team personally to check regarding the test results. I feel relieved to have a direct way to contact someone who is effecient and timely. Thank you Gillian for this great tip!

An area for prayer is Brady's Broviac site. As you know we have surgery scheduled for June 5th which means we will have 2 dressing changes between now and then. I noticed his site looked kind of "gunky" tonight, so we decided to change it today. While taking off the old adhesive dressing, we noticed that there are two patches of skin that have come off leaving raw areas underneath. I am supposed to clean the area using a sterile sponge soaked with an alcohol solution. Imagine having to do this over an open sore. This was a terrible experience for me, but a horrible one for my poor Brady. We are just frustrated that this surgical date was initiated sooner and that we have to wait 2 weeks for a 15 minute procedure. Matt is going to call tomorrow to insist that our doctor does something, anything, to get this thing out sooner. The site where the tube comes out of his chest is starting to not look good, which raises concern of infection. Honestly, I don't think I can bring myself to do that one more time.

Hopefully if anyone else needs encouragement today you will find this verse as helpful as I do tonight:

Ps 62:2 He alone is my rock and my salvation; he is my fortress, I will never be shaken.
I'm so very glad I have Him to lean on :)

Tuesday, May 19, 2009

Time to Digest Things

Another busy day today! Brady and I went to his first official PT appointment in Rochester. Wasn't the PT shocked to see Brady walking down the hall to the room. We were there about 2 1/2 weeks ago for his evaluation at which time Brady was only starting to walk on carpet. He didn't walk at all during that appointment. Her mouth just hung open as he proudly walked down the hall and started exploring all the toys in the room. He has a great rapport with PT Linda. He played with her easily, let her touch him, and was easy going and silly throughout the 30 minute session. Hooray for Brady!

Okay, so after 24 hours to digest yesterday's appointment with the oncologist, our conclusion is that we are not satisfied. A fellow NB mom, one whose precious son is no longer here on this earth, emailed me after reading my post yesterday. She gently reminded me that being okay with sitting back and waiting may not be the best idea. She reminded me that NB is a sneaky and unpredictable disease. Her son had a vague area on a scan that they were told was nothing to worry about and 3 months later it had grown to be bigger than the original tumor. These are not stories meant to scare you or me, this is a reality, this is Neuroblastoma. I read about precious children who are dying everyday, children who have achieved cancer-free status only to have this terrible beast return.

Matt and I have had a chance to regroup and to talk about things. We throroughly read the radiology reports which are complicated at best. There are several sections of the report that raise questions for us. Some of what they noted on the scans just doesn't mesh with what we were told happened during surgery. For example, Dr. L told us that he only removed a piece of Brady's 4th rib, however the scan reports note some sort of involvement in the 5th and 6th ribs. This is our Brady, we cannot just sit back and trust that everything was gone over completely and that things are okay. Our plan is to send the scans (we have a copy) and the radiology reports to Dr. L at Sloan for his review and to request that their radiologist review them. This sounds easy, but if you have been following this story for a while, you know that this will take some work!

Please be praying for us. I find myself enxhausted these days and I know Matt is too! The incredible responsibility of staying on top of Brady's care is quite a job and it is taking a toll. When I start to feel like I can't go on, I think of all of the families who no longer can fight the fight, or those who have been fighting it for years. As you remember us in your prayers, please pray that all families affected by this disease will be strengthened and encouraged today.

Monday, May 18, 2009

We are back from our appointment. I wish I could tell you with great clarity the results of the scans, but I can't. Our oncologist was very laid back and somewhat vague as to the results. The scans do show "something" but nothing that wasn't expected. There are very small lesions that show up in the chest and the spine, but they are not new spots. It is likely that they are residual tumor, or they could be scar tissue from the surgery. During the appointment, the doctor basically just showed us some scans and tried to show us where the area of involvement is. MRI and CT scans are not a perfect science. They can't tell you what you are looking at. The urine results won't be in until Wednesday, so we weren't able to see if those have stabilized either. So the plan is to come in in 3 weeks, repeat a urine test. Then we rescan in August. Last week's scans will be our baseline to compare all future scans against. By using that data and the urine levels, we will be able to know if new tumor is growing. For now, we just wait and watch.

His Broviac surgery is scheduled for June 5th, the earliest appointment we could get. That is a big let down to have to wait 2 1/2 weeks, but we have no choice.

That's the news of the day. Brady did a great job and for the first time was able to get his height and weight done standing up like a big boy!!! Momma was so proud:)

Sunday, May 17, 2009

Hopefully we all are turning the corner after our week of sickness. The kids are all getting better by the day. Eli still is quite stuffy and congested, but he seems happier today:)

Tomorrow Matt, Brady, and I will leave her at about noon. Our first appointment is with a surgeon to consult about having Brady's Broviac out. We are hoping to have it out ASAP. At 2:30 we will meet with the oncologist to discuss the results of Brady's scans. The wonderful events of the weekend have been a good distration, but the ever familiar pit in my stomach is slowly coming back as we approach tomorrow's appointment.

Of course I will update as soon as I can tomorrow. Thank you all for your contiuned prayers!

Saturday, May 16, 2009

Praise Night

We are just getting home from the Praise Night at the Oakfield Methodist Church. My heart is overflowing with the love that was poured out on us from everyone there. It is not every day that your community comes together in such an awesome way. I wish I could tell you every detail of the night...but there were so many blessings it would take me all night! There were groups who sang, children who sang, people who played the piano, teen bands, choirs, soloists...all praising God with beautiful music. At the end of this amazing evening, the crowd each lit a candle as our family was asked to look out and see the "lights" and faces of all of those who have been praying. A moment I will never forget...

We were also blessed to see a slideshow of pictures of our family while the beautiful candles flickered in the crowd and the song "Go Light Your World" sung by Chris Rice was played. I managed to say a few words of thanks and felt like a sputtering mess, but hopefully my gratitude and appreciation shown through my emotion!

THANK YOU to everyone who helped organize this event, to everyone who shared their music, and to all who came to praise with us. The focus of this night was to come together to glorify He who has been with us each step of the way. I'm so overwhelmingly honored to call this community my own and to raise my family among such caring people. With great love, Megan

Friday, May 15, 2009

Goodbye Week!

You know those weeks of your life that you would just assume forget? It's been one of those...

The kids are all still suffering in one way or another from this cold. I noticed this morning that Eli was coughing more than yesterday, but his spirits were pretty good, he was just a little clingy. After his nap though I noticed he just wasn't right. He walked around the house doing his usual things, but without the Eli spunk he usually has. His temp was 102 and I noticed his eyes were glassy. He started coughing quite a bit, so I called the doctor and got an appointment for 4:50. Matt rushed home by 4:15 while I quickly prepped dinner, gave the kids a snack, and fed the baby. Eli and I made it to the doctor right on time and his diagnosis...RSV!! I was horrified because when you have premature triplets, the whole first year of their life you dread getting this illness because of how it can compromise their lung function. It certainly isn't that serious at age 2, but I was shocked none the less. Basically he has a bad cold, ear infection, and chest congestion/wheezing. My poor baby...he is on antibiotics for the infection and other than that we just wait and watch to make sure his breathing doesn't get worse.

So, at the end of this week as I think to myself, how do you pack a CT, MRI, anesthesia, heart murmur, precancerous mole, big head (ha!), 3 people with colds, and 1 boy with RSV and an ear infection all into one week? Come live with the Williams family, that's how!

If I'm not laughing about, I think I'll cry:)

Thank goodness tomorrow is the Praise Night. I certainly need to refocus myself and celebrate the miracles God has done in Brady Andrew's life. As I drove home from my 9pm trip to the grocery store I thought about what would get me back on track tomorrow morning? I know just the thing, seeing my little boy toddling across the kitchen floor while saying, "Brady walkin!" That should do the trick...
Please join us tomorrow night at Oakfield United Methodist Church for an evening of Praise at 7pm~~~~ All are invited to this free event~~~~~~~~~

Thursday, May 14, 2009

It's 9:15 and the Williams kids are all snuggled in bed. Whew...what a day! Here is a recap:
Brady and Matt were at the hospital most of the day. They were able to draw blood and collect urine without a problem. His scan was only 35 minutes behind schedule (a record for sure!). He went in at about 1pm, and Matt said he was great all day until just before the scans. Of course he hadn't eaten all day and was exhausted, so he got grouchy. The scans lasted quite a while, and Brady woke up a little out of sorts. Matt was frustrated because although they used a mask to put him out, he came out with an IV in his foot. It makes no sense at all to give him an IV when they could have easily used the Broviac! Ughh...

They got home at about 5:30 and Brady was groggy but in good spirits. We will have our meeting Monday with the oncologist to discuss the results.

Allie and I were home by 11:45 from her appointment. She is growing big and strong (in the 90th% for both height and weight). We do have to see a dermatologist for a spot on her leg that the doctor told me is a precancerous mole-type thing. She said I could take my time getting it removed, but of course we will get going on that soon. Her heart murmur is still there, but not of concern. Her head is measuring quite big, so we will go back in 6 weeks to see if her head size has leveled off. Other than those 3 things, she is the picture of health (ha!) What I wouldn't give for an "everything looks great" doctor's appointment!

I wanted to share with you all a picture I snapped yesterday. It was just one of those moments as a mom that make you stop, and thank God for what you have. I just loved the sight of three little pairs of play shoes by the back door...precious...

Wednesday, May 13, 2009

Scan Day

I caught the family cold in all of its glory. I was out of commission all day, Matt even had to stay home from work. I'm feeling 20% better tonight and am hopeful that I'll be functional tomorrow!

I'm taking Allie to her appointment at 9am. Matt and Brady are leaving at 9am also. They have to be at the pediatric oncology clinic at 10 for Brady to have blood and urine collected, then downstairs by 11:30 to check in for his scans. Please be praying for Brady because he cannot eat or drink until after his scans. The radiology department is almost always running behind, but I'm hopeful that he will get in as close to 12:30 as possible. We are also praying that between now and tomorrow Brady will not get sick with this cold. I noticed he is a little stuffy, and if he gets very sick, they won't do the scans. He will be under anesthesia, and if you remember the last time he had anesthesia at Strong he had a reaction to the Versed. Of course we are insisting that they use something else, but with any anesthesia comes risk. Please remember sweet Brady in your prayers:)

Matt and I are surprisingly at ease about the results. We are clinging to the hope that there will be no new tumor growth and that we can rest easy for the three months until the next scan date. Our God is so awesome and certainly He has allowed Brady to triumph through everything so far!

Brady is letting his silly side show more and more these days. We are having a good time "tricking" him by telling him that he has to walk because his pants are "walking pants!" He is walking without being prompted a lot more all of a sudden. He doesn't seem as scared to walk on the hard wood floors. He bends without holding on to anything to reach things on the ground.

Here are some funny pictures of Brady! I was flushing his tubies after his bath and lately he likes to take the mesh that we use to hold his tubies and put it over his head. He was giggling so hard that he couldn't talk (so was I!)

Tuesday, May 12, 2009

2 days to go

Thursday (scan day) is just two days away. What a battle I have between "best case scenario" and "worst case." Like all the other painfully long periods of waiting we have endured, I just want to fast forward to next week. We will meet with the oncologist on Monday to go over the results. I'm hoping that maybe she can call us Friday to give us any news. We also are meeting with the neurosurgeon who operated on Brady back in Januray. We are interested in discussing possible ways to stabilize Brady's spine either through surgery or bracing. Brady has PT on Tues and Thurs morning in Rochester next week. Then on Friday next week the triplets have their 2 year appointment. SO, driving to Rochester 5 days between now and next Friday!

There are some terrific events happening this week to support Brady! Tomorrow night from 4-8 the Alexander High School Builder's Club is hosting Brady night at Wendy's restaurant in Batavia. For those 4 hours, 10% of proceeds will go to support Brady! On Saturday night at 7pm the Oakfield Methodist Church is hosting a community Praise Night to honor Brady. There will be several performers from local churches participating. My community has been a tremendous source of support for us and we are looking forward to celebrating all God has done for us at this wonderful event!

Pray for our little family as all seem to be succombing to this cold that is going around.

Monday, May 11, 2009

Runny Noses

It seems my little cherubs are passing around a cold. Cara has it the worst, but she always seems to get it first! This is only our second cold since last fall, so I won't complain!

Not an awful lot of walking from Brady today. Everyone was a little whiny and I seemed to just be bouncing back and forth between them all day trying to make them happy! My dear friend Lynn was with us for the afternoon and made a delicious dinner for our family...homemade chicken and biscuits! So good.

I attempted to call the surgeon today to set up a date to have Brady's Broviac taken out. Imagine my shock when they told me he was booked for months! I did get an appointment with another surgeon for Monday as a consult appointment. Hopefully we will be able to get in with this other doctor. Remember Nathaniel, the little boy I asked you all to pray for who had his surgery 1 1/2 weeks after Brady? Well he just got home last week and had his Broviac out Friday!!! I'm truly happy for him because he is recovering so well and now tubie free! I really feel like things here at home for us need to be better coordinated. We want Brady tubie free SOON!

I got an email from another mom blogger today. She featured me on her blog today. You can check it out by clicking here and scrolling down. Thanks Melanie (my blog guru). Even I understood your directions:)

Sunday, May 10, 2009

46 Feet

Brady decided to make today a great Mother's Day for me! We went to my inlaws for dinner tonight. Brady had been doing a lot of walking today, without us prompting him. The kids were having a great time exploring Grandma and Grandpa's house and Brady decided he would walk from one end to the other. So, that is just what he did! I made Grandpa measure the length of Brady's journey and it was 46 FEET! He walked the whole way by himself without stopping, simply amazing!

I'm a proud mommy on this Mother's Day. I have 4 amazing kids who make every day an adventure. I have a terrific mom and a wonderful mother in law. For all of these reasons I feel truly blessed. Happy Mother's Day everyone.

Saturday, May 9, 2009

Lilac Festival Fun

My kids have been out in public two days in a! Seriously, it doesn't happen very often. Today we ventured with Grandma Sandy and Grandpa Ron to the Lilac Festival in Rochester for the big parade. We were one adult per child, so it was perfect! The kids had a lot of fun watching the bands, firetrucks, police cars, motorcycles...all their favorites. Then we walked up to the park and had a picnic lunch among the lilacs, just gorgeous! Even Allie had a great time as she spent the day giggling and cooing at everything around her, what a dream she is. I wanted to walk down to the pansy bed to get a picture of the triplets next to the flowers. We took a picture last year and it was one of my favorites. Unfortunately, it started to rain, and we had about a mile to walk back to the car. I got a few quick ones and then we started hustling to get out of the rain.

Of course bringing our choo choo wagon out in public means more attention than you could ever want. People thought we were part of the parade as we walked along the street afterward. I must have heard, "Look at that adorable wagon!" a million times! By far my favorite comment of the day was, "Hey mam, are all of them twins?" Huh? "No, there are three of them, so all of them are triplets!" Wow...

I hope you enjoy some pictures from our day! These are for you mom...we love you "Numma" across the miles!!! (my mom is visiting my sister in Minnesota)

Mommy's little girl

Eli and Daddy watching the firetrucks go by!

Mr. Cool relaxin' in the wagon eating his lunch!

Handsome boy!

It was hard to get a picture of Cara, she never stopped moving!

Brady's walking and bringing mommy a flower!!

Allie is pure delight!

Our quick stop at the pansy bed

Friday, May 8, 2009

Our Day with Thomas

What a beautiful day it turned out to be! It seems the weather forcasts are never quite right in Western New York! Mom, Matt, Eli, Cara, Brady, and I had a great time visiting Thomas the Train in Medina. There were very few people there, the sun was shining with a light breeze, and the kids just loved all there was to see and do. One mishap was that we forgot our wagon. Luckily we had the single stroller in the van, so one kid was able to ride while the other two walked or we carried them. It worked out really well because they wanted to explore and romp around. I was very impressed at how age appropriate things were for my kids. I always worry that because they are 2 that things like this will be over the head, but not so!

Here are some pictures from the day (I'll share more another time. My mom took more than I did...)

Cara with her new Thomas tatoo!

Eli petting a horse!

Brady boy petting a horse!

And truly, my favorite picture in a long time. Thank goodness I was wearing sunglasses to hide my tears. Our hero Brady and his daddy walking hand in hand in their blue-plaid shorts...beautiful!

That Brady walked more at Thomas than he has all week! He walked on grass, he walked on the sidewalk, he walked on this carpeted tent area. I'm telling you, I think the Brady cart that he happily pushes around this house may have to disappear! When we unloaded the kids from the van and were walking from the garage to the house, Matt put Brady down and told him to walk. Well...walk he did! He slowly toddled the 15 feet all by himself!

Thursday, May 7, 2009

Taking the Bull by the Horns

UPDATE ON BLOG CONTEST: So it seems I won 2nd place out of the Top 10! I'm honored because many (if not all) of the moms featured have VERY intricate blogs that use advertisements, product endorsements, giveaways... I just have a beautiful boy and MANY faithful friends and family members willing to support my little blog! Hooray for us! I'm pretty sure Steps for Brady will be featured on the Momlogic site and I think I also may have won a blog makeover (again, clueless here, certainly I need a makeover more than my blog?) Anyway...thanks for your help! With love, Meg

Being the impatient parents that we are, Matt and I decided to pool our resources and get a scan date TODAY! Remember our two favorite nurses in the pediatric MRI/CT department? Well, Matt called them this morning, and by noon we had our scan date and time. We were both sick of sitting back and waiting!!! There were a few more hiccups in the insurance process, but I think we are on the right track. Brady's scans will be May 14th (next Thurs) at 12:30. He will have urine and blood tests done that morning at the clinic. Allie's 6 month check up is that same morning, so I'll be taking her, and Matt will take Brady. I'm expecting paperwork from the general surgeon soon to initiate getting a date for the Broviac surgery...hooray!

We are going with Grandma to see Thomas the Train tomorrow! We have a babysitter for Allie, so we will be one adult per triplet! I'm so excited to do something fun with my three to follow!

They are announcing the winner of the blog contest at 10:30 tonight. I'll come back and share the results after that.

Wednesday, May 6, 2009

Come on Brady...walk, walk, walk!

I'm telling you, the boy can walk!!! I'm also telling you, the boy is smart, stubborn, and knows how bad we all want him to walk. That is all the motivation he needs to keep pushing his walking toy around the house! Brady continues to only walk when he is in his silly moods before nap and bedtime. He does a GREAT job too! I actually coerced him into taking a few steps on the grass today. Lately we are telling him a lot of things like "The rule outside is that you can only walk like a big boy on the grass!" Sometimes he falls for it, other times he knows full well what an idiotic rule that is and just crawls away!

My mom and I hung up the 4th and final (yes final) swing on the Williams family playground today. Allie know can proudly swing between Cara and Brady in her brand new pink swing! Check out this great pic of my funny foursome!

Another first for the kids tonight after dinner: E.L. Fudgestripe cookies! Yummy! Brady tried to close his eyes to escape this shot and notice the cookie perched on his finger; truly the only way to eat an E.L.Fudge!

Just by thinking about the past few months today, God smacked me right between the eyes with this thought. I was so quick to share scripture on this blog when things were going terribly in our life...I was so strongly trusting in God's promises when the going got tough. I notice that I have let that slip in the past weeks because things have settled down a bit. SO...I'm learning more and more that I have to be as passionate about faith even when the storms of life aren't raging. After all, God's love for me was the same on Jan 21(day of diagnosis) and April 6th (day of surgery) as it is today!! Don't I owe Him the same?
The unfailing love of the Lord never ends! Lamentations 3:22

Just a reminder: Tonight is the last night to vote for my blog in the Mother of All Bloggers contest. As of last night, the administrators were assuring everyone that all votes are counting, even though a message tells some that they have already voted. Yes, I'm skeptical too, but we have come this far!! Voting ends at 11:59 tonight!

Tuesday, May 5, 2009

Frustration and Fun

The good stuff first: I had a fun night out with my triplet mommy group in Rochester. We are a group of all triplet moms who meet once a month for dinner (usually lasting 3+ hours)! Lots of fun to just get out and gab with a bunch of girls!

The frustrating stuff: Still didn't hear back from Strong today, so I called them...again. The whole story is too long, but the short story is that our oncologist heard from Sloan a week ago after they discussed Brady at tumor board. No one from Sloan called me after tumor board, as they told me they would. My oncology team didn't call me either. I was frustrated and but at the same time I need to keep everyone on our side. Basically the tumor board recommended that Brady be followed with scans every three months. So, that is not anything we didn't already know. The frustrating part is that I've been waiting for someone to return my two phone calls in order to get the ball rolling to schedule his scans. We are hoping to have them done as close to the 18th as possible (6 weeks post op). My oncologist said she would start working on getting it scheduled. So we have been home for 4 weeks and really haven't gotten ANYWHERE!! It has become painfully obvious that Matt and I need to stay on top of EVERY aspect of Brady's care. No one else knows his whole treatment and surgical history, therefore things are constantly missed or not considered when making decisions. It is a sad reality, but more often than not we have to initiate the next step in his care.

So, I should be hearing soon from Strong regarding a scan date. We are going to do a CT of his chest and MRI of his thoracic spine. His urine and blood will also be collected. If anything looks suspicious, further tests will be done. I brought up the issue of getting his Broviac taken out. I think I mentioned that at this point it seems useless to keep it in any longer because he is no longer receiving chemotherapy or needing blood draws. Our doctor told us that once we get a scan date, we will also schedule a surgery date for Broviac removal soon after! Hooray! We are already finding things like sand from the sand box in his dressing and I can just imagine what else will find its way in there this summer!!!

Please keep us in your prayers as we continue the agonizing waiting game. Please pray for Brady's complete healing!!!
Wednesday is the last day to vote in the Mother of All Bloggers Contest! Click on the link to the right to vote for Steps for Brady! More people have been able to successfully vote and I appreciate your help so much!

Monday, May 4, 2009

His Shirt Says it All

Despite the red eyes, I love this picture of Brady. And the T shirt truly says it all!!!

I'm still waiting to hear back from Strong regarding scanning dates. I'm growing anxious by the day...I just need to know what's going on in there. I hear every day of other children with NB earning their "angel wings" and my heart continues to break for the many families who no longer have their precious children with them. Please join me in praying for the many sweet boys and girls who are suffering with Neuroblastoma. I consider us to be blessed to be where we are in this fight, even though it is still incredibly difficult.

Thank you to all who continue to support us with cards, phone calls, and prayers!!!
Only two more days to vote for me in the Mother of All Bloggers contest! The site continues to have problems with people getting a message saying they already have voted. If you have a minute, please click on the icon to the right and try to vote!

Sunday, May 3, 2009

Eating Out...Always a Good Time

So we survived our eating out adventure. I truly think this may be the first time we have gone out with the whole family since Allie has been born (6 months ago). After church we went to Kaboodles Cafe in Elba. I suggested to my mom that she call ahead and make a reservation for as many high chairs as they had. Our gang of six, as well as my mom, and my brother's fam of four descended on the place to celebrate Auntie Kristen's birthday. All together there were 6 kids and 5 adults. The kids did a really great job and I'm sure the staff at Kaboodles is more than thankful to my family for reorganizing their jelly containers, creamers, and sugar packets. It's no fun to have them sorted by color and flavor anyway!!!

They heard it was Kristen's birthday and made her wear a big birthday hat! Then, this group of four women offered to sing her "Happy Birthday." They were wearing matching jackets and all of a sudden they broke out into four part harmony! Come to find out they are a professional group called Mach Four who were in town for a competition! They were terrific...what a treat!

Some Brady news: Today Brady took 8 or so steps on the hardwood floor. I've come to the conclusion that he is totally capable, he just is STUBBORN! I love his stubbornness though, but I wish he would just stand up and take off! As I put them to bed tonight, we just walked back and forth from one end to the other in his crib. If he can maintain balance while walking on a mattress, then I know he can walk anywhere!!! Come on have a whole world to explore!

Monday means phone calls, and I'm planning on starting off the week right! I need to bug Strong about getting a scan date again. We are only 2 weeks away from when he is supposed to be scanned (6 weeks post-op). Matt and I don't want to wait a day longer than we have to. We are more than anxious to get his Broviac out...his skin is so sensitive under the dressing and I want him to be able to swim and play like everyone else this summer.

Saturday, May 2, 2009

The Great Cookie Experiment

A great day in our house today! Cara and I went to church this morning for the Ladies' Luncheon with Grandma Sandy and my mom. My mom gave her testimony and life story and it was a BIG blessing! At the end she showed pictures of each grandchild up on the screen. When Cara's picture came up, Cara just shouted "Tara (how she says her name)" and then just giggled SO LOUD! It was a cute moment for sure.

Eli, Cara, and Brady each took a 2 1/2 hour nap. Those of you with children are rejoicing right along with me on this one!! I did a few odds and ends, then just took a snooze on my couch. Allie woke up about an hour before they did, but I plopped her in the swing and she fell back to sleep. was wonderful!

After naps I put Eli, Cara, and Brady in their highchairs for snack time. I gave them each 6 little graham cookies and decided to do a little personality test. After a few minutes I asked them, "Who will give mommy a cookie?" I kind of figured I knew what would happen next, but I love to put them on the spot like this once in a while just to see their different personalities in action. I started with Eli. That little sweetie picked up a cookie so fast and said "Mommy eat one!" and put it right in my mouth. What a doll! Then it was Cara's turn. I asked her for cookie. She promptly picked one up, said, "Mommy?" and started to put the cookie in my mouth. Just as soon as it was about to touch my lips, she pulled it back, shoved it in her mouth and said, "Tara's." Huh, figures! I turned to Brady, who of course had been watching this whole thing. Before I could even ask him for a cookie, he just took both hands and covered them up and said "no!" There you have three cherubs! Don't let this experiment fool you though. They each have their moments of pure sweetness, and other moments where I wish the circus was in town so that I could sign them up!!!

Tomorrow we are attempting going out to lunch with my brother's family. It will be 5 adults and 6 kids 2 and under. I won't mention the restaurant for fear that they might lose business if people find out we will all be there!

Friday, May 1, 2009

Slacking on my Phone Calls!

As this week comes to a close, I'm feeling a like I slacked a little bit too much with keeping on top of things this week. First was the whole "misplacing the PT paperwork incident" (the paperwork, by the way, is still missing. I'm beginning to think it is somewhere in a garbage can in NYC!) This afternoon I realized that I hadn't heard back from Strong yet as to a date for scans. I called on Monday and they didn't get back to me. I'm sure they are working on it, but it is so not like me not to be bugging them every day. I also haven't called Sloan since Monday to see if the remaining results are back. I'm not sure why I haven't been more diligent this week. Honestly, I think I'm just tired and was focused more on Brady's PT appointment. So, I'm going to enjoy the weekend and then get back on top of things Monday. Here's to being a slacker once in a while!

Brady isn't napping as well as usual lately. Of course, I'm worried that the slightest change in his routine means something is wrong. Very brief naps=very grouchy Brady by about 5pm. He made it through the day and is sleeping soundly now! He didn't do much walking today...maybe he was joining me in my slacking off:)

Please continue to cast your votes for the Mother of All Bloggers Contest. Voting ends May 6th. There are a few kinks that the site is trying to work out. I guess some people have been trying to vote and it is telling them they have already voted. I'll find out more details tonight I hope. You can click on the icon to the right, or cut and paste the link below:

Thanks for your support and your votes!!!