Brady's Hemangioma

Another "Adventure"

2010-03-16T17:11:00.003-05:00

It's been a while, so here's an update on our big boy. Brady had the laser treatment done in December. The procedure only took about two minutes, he cried pretty hard but got over it quickly. We haven't seen a lot of effects from it yet, so Dr.Drolet thinks we'll wait a while before we do any more. Christmas came fast, and Brady didn't really care. He didn't know the difference between Christmas and Tuesday. Maybe that means he already had too many toys!

Jan. 1st...FINALLY Brady stopped taking his beta-blocker treatment. It was the first time since he was 5 weeks old he hadn't taken any meds. Yeah!! His hemangioma seems to be stable and slowly fading.

Now the "adventure" part...

at Brady's 15 month well-baby visit his pediatrician noticed that his feet were not growing correctly. He refered us down to an orthopedic surgeon at Children's. (really, back again!) After x-rays of both feet and his pelvis, Dr. VanValin diagnosed him with metatarsus adductus of both his feet. In most cases the babies feet correct themselves over time, of course Brady is the exception. He recommended we have Brady's feet casted to help correct them. So last week we went back to Children's and Brady's legs were put into two big blue casts. The cast will be changed every two weeks for six weeks. They go all the way up to his hips with a 90* bend because little beelers would slip right out if they were any shorter. Brady seems to be doing just fine with them on. He can crawl just as fast and makes tons of noise with it. He does get a little frustrated with not being able to stand, but he never seems to run out of trouble to get into. One week down, five to go!

Brady Turned 1!

2009-12-06T21:02:00.004-06:00

Brady now turned 1, and what a year it's been! It wasn't always easy, and it wasn't all good, but the great memories and milestones really outweigh everything. Brady has a mouth of chompers and is a spunky little boy. He isn't walking quite yet but he sure gets around, and into everything. He babbles all day and is full of slobbery smiles and kisses.

Brady is still on his beta-blocker treatment and he'll be on that until Jan 1 (that day can't come fast enough). His hemangioma is looking great. There are areas that are back to normal skin color and the rest is well on it's way. On Wednesday this week Brady will be having a laser surgery on his hemangioma. Dr. Drolet thinks the treatment will be very effective in getting rid of some of the color still left. It was a big decision for us whether or not to do this, but for Brady's sake we're going for it. Cross our fingers and say lots of prayers that it all goes well.

It's crazy to think that sooner than later our little boy won't see doctors, won't be on meds, and won't have the red little face that we love so much.

1 is just around the corner

2009-09-27T21:08:00.002-05:00

Now that summer is turning to fall, that means two big things....Brady is going to be 1 (nov. 29) and hopefully the end on taking meds. Brady is still on his beta-blocker treatment and it is still going well. We will go back to Children's in November for another appointment and Dr. Drolet will see if she thinks he can stop the treatments. We just pray and cross our fingers!

Brady is 10 months old now and getting so big. He loves to stand on everything and crawls everywhere. He has 5 teeth and eats the strangest foods...cole slaw (not the creamy kind), onions, green peppers, tacos, and everything else a normal baby wouldn't touch! He is always smiling or has a silly grin on his face. How can you say no to someone so cute?

Time flys when you're having fun

2009-08-21T21:21:00.004-05:00

Well summer is just flying by for us. Brady is now 9 months old and he is doing great. The little stinker is crawling everywhere and trouble is his new middle name....watch out Romey! Brady took a few camping trips this summer, went to a Brewer game, took a few trips to the zoo, and went to Chicago with Mommy and Auntie Bitsy. Busy little boy!

Brady went to see Dr. Drolet a few weeks ago and he is going to stay on his beta-blocker treatment for a few more weeks. Everyone is very happy with how his face is looking. The color is getting lighter, especially his ear area and down his neck. Dr. Drolet wants Brady to get a little older so that when she stops the medicine the hemangioma will be done growing...fingers crossed. Hopefully in a few months he won't need to take any medicine at all, that'll be great!! Brady went to the eye doctor today too. He no longer needs to wear his eye patch ;-) We will just have to go back every few months for follow up appointments.

Another big change for the little man is that he started daycare this week...yup, Brad is back to work. He seems to be doing well there and is adjusting like a champ. His teachers are very nice and he is making lots of little friends. Brady is still anxiously awaiting the arrival of his new baby cousin...November can't come soon enough!

Break Time

2009-07-07T21:21:00.005-05:00

These are pics from the NEW Zoo last weekend. Brady had a great time and thought the animals were funny!

We had another appointment @ Children's today. Good news...we don't have to go back for 5 whole weeks!!! That will be the longest Brady has ever gone without seeing a doctor. The plan is to keep giving him the same beta-blocker dose until he gets past 8 months (beginning of August). After that we will try to take him off and see what happens. They will be keeping a close eye on him to make sure the hemangioma doesn't keep growing. Cross our fingers, but taking him off is the only way to know when it has stoped.

Brady is doing great...he is a very happy baby and is growing so much (15# 1 oz. today). He is scooting everywhere and we think crawling is right around the corner. Pandora's box is open! We've been keeping busy with our crazy summer. Always something going on. Brady loves being outside and is turning into a little fish!

Some attitude eating dinner

2009-06-16T14:14:00.005-05:00

Just a short vid of Brady eating turkey n rice. He doesn't like it very much. I don't blame him. This is Brady's first week not having to go to Children's Hospital in like 6 months. The beta blocker seems to be working well with the hemangioma. What a relief that is. We are attending a fundraising luncheon presented by Dr. Drolet though on Thursday. Becky and I have to give a 5 minute speech at the beginning which I am nervious about. Also it was Brady's first day of swimming class yesterday. The goal is to just get him used to the pool, not to be the next Micheal Phelps when hes done.

Play Ball!

2009-05-31T20:15:00.005-05:00

Brady went to his first Brewer game today! The sun was out and they won, what more could we ask for : )

Big Week

2009-05-31T19:58:00.003-05:00

Big week for Brady...

Memorial Day weekend was his first camping trip! We had great weather and Brady loves being outside. He loved the boat ride @ uncle Matt and auntie Bitsy's & he loved the fire @ uncle Beej and Stacey's. Our nights were rough but they can only get better!

No more PICC line too! This week they pulled his line out, it was getting old. The beta-blocker treatments seem to be working well so right now we're waiting to see how he reacts to no chemo. If he is still doing good we will just continue the beta-blockers solo. Cross our fingers!

Home Sweet Home

2009-05-15T19:22:00.003-05:00

After flirting with all his nurses and doctors at Children's this week Brady got to come home (very) late Wednesday night. After they started his new medicine we stay for 2 days as an inpatient while they monitored his blood pressure. Like usual there was a snag. There was a miscommunication about Brady's dose and he was being under-dosed for 3 of his 6 treatments. It didn't cause any harm, just a bump in the road. He seems to be doing well on the meds, he's a tough little guy!

Home Sweet Home now. We'll keep up with the beta-blocker treatment for a few weeks now until we know for sure if it's working or not. Until then it's just a waiting game...so play ball!

And if you haven't already heard....Brady's going to have another cousin!!!! His auntie Bitsy and uncle Matt are expecting their first sweet baby in November. What a great birthday present for Brady. We are all SOOO excited :)

p.s. Brady loves hanging out in the kitchen. Who knew there were so many fun toys in there!

Another Adventure for Brady

2009-05-10T21:52:00.003-05:00

Brady is doing great! He is 5 1/2 months old now and really "Mr. Personality". He eats cereal like a pig; he loves pears, squash and green beans; he hates sippy cups; has a best friend, Maddix; a best stuffed friend, Jeff the Lamb; a favorite blanket for bed time; and has a silly monkey he takes in the car with him!

His ear is almost all healed and his PICC line is doing good too. Brady will be going on another adventure this week... His doctors want to try another medicine to help treat his hemangioma. It is a beta-blocker, the kind of meds used to lower someone's blood pressure. They are hoping that it will limit the blood feeding the tumor and help it start going away faster. They have not used this on a lot of babies, but on some it worked really well and on others it didn't work at all. So we're going to give it a shot. While we try this he will still get his regular chemo, we don't want to run the chance of the hemangioma growing wild again. The big down fall is that we will have to spend a couple days in the hospital so that they can monitor Brady's blood pressure. We'll be admitted Tuesday AM and hope to be going home Wednesday PM. If this works (we should know within a few weeks) then they will pull his PICC line and he will stay on the beta-blocker until they think the hemangioma is done growing (8-12 months old). If it doesn't work, then we will just stick to the chemo like planned.

We pray that no matter if it works or not, that Brady is as happy and healthy as can be! And we pray for warm weather too : )

A mini "hello"

2009-04-20T19:07:00.003-05:00

Brady gives a mini "hello" to everyone. The Easter bunny came last week (Brady was a good boy!) and brought him some toys and a Brewers t-shirt. Auntie Bitsy bought him a big singing frog puppet, it's soooo funny!!

Well we tried going every other week with the chemo and that didn't work. His hemangioma grew and ulcerated his ear again : ( It's healing now, but it's really sensitive to us putting the cream on. This proves that it is still growing very aggressively. Since we've gone back to every week treatment the swelling has gone down. So our plan for now is to keep doing chemo every week... For how long? Not sure. We're hoping that in the end we'll be able to stop by the time he's around 8 months or so. (3 1/2 months to go). Hemangiomas grow on their own schedule and every baby is different.

He sure is a happy little boy and we love watching him grow and discover the world!

Brady Means Business

2009-04-01T11:48:00.002-05:00

Yesterday was the last day of his Vincristine study. He had a MRI done in the morning and some blood drawn. Dr. Drolet wants to keep Brady on the Vincristine for a while longer but at a decreased rate. A dose every other week instead of every week to see how long he can go without needing a treatment. The chemo is doing a great job so far keeping the hemangioma from growing out of control. We are all thankful of all the great doctors and nurses that take such good care of Brady at the Children's Hospital. If they weren't doing a good job Brady would let them know because he means business. Can't you tell.

Bring on the Sun!

2009-03-24T17:29:00.002-05:00

Check out all my new hats!!

ARRRRRRG!

2009-03-24T17:18:00.005-05:00

Brady got his eye patch on Friday! The hemangioma is making the muscles around his eye weak, so he went to a pediatric eye specialist to check it out. The patch is over his good eye so it will force the bad eye to work harder and build the muscles back up. Our little pirate will wear his patch 2 hours a day for the next 2 months until we see the eye doctor again. "ARRRRRG, I love pears!"

Vincristine Trial

2009-03-12T17:45:00.001-05:00

I just wanted to post a link to Brady's trial information. It's kinda technical. http://clinicaltrials.gov/ct2/show/NCT00555464

Marching On

2009-03-09T20:38:00.004-05:00

Brady is doing great! Last week he had another PICC Line placed, this time in his left arm. This will hopefully last us through the rest of his chemo treatments. Dr. Drolet thinks we'll do about 7 more. That will bring us right into May and 5 months old! Brady has been eating like a champ and even started eating cereal (like a messy pig!). We're hoping that he'll weight at least 11# at his appointment tomorrow, that'll be a big step! These are his 3 month pics...too cute ; )

Sunday Night Scare

2009-02-25T14:42:00.003-06:00

Brady was baptised Sunday! Brady was a beast during church and he didn't like the idea of Pastor Don splashing water on his head. All of our friends and family came over for lunch at our house. It was a good day. Sunday night around 7:00 Brady was really fussy. He was running a fever of about 100.5. Becky checked his PICC line site and there was some pussy stuff around it that wasn't there earlier in the day. So she called Children's Hospital and they said we should go to Bellin ER. Bellin contacted C.H. after their findings and then we were told that we had to go down there right now. So we drove to Milwaukee Sunday night and Brady was admitted. He was put on an antibiotic IV and was closely monitored through the night. Blood cultures and cultures from the PICC site were taken. They said the results would take 48 hours to come back and recommended we stay till they do. Monday afternoon Brady's Oncologist Dr. Kelly said that we could go home if we wanted saying that he sees this all of the time where a pussiness forms around the PICC line but rarely infects the blood, so he said we could go home. Tuesday morning at 2 a.m. we got called with positive blood results of a bacterial infection so we had to drive back to the C.H. He was put back on an IV. Doctors concluded that the only way to treat the skin infection and the blood infection would be to remove the line. So they did. He recieved his Chemo treatment on Monday so it didn't matter if they took it out. When we go back next Tuesday they will put a line in his other arm and continue treatments as scheduled. In the meantime he will be on a stronger dose of antibiotics than he previously was to remove the blood infection.

Brady's Beginning

2009-02-19T10:14:00.014-06:00

Brady was born Nov 29 2008 a happy and healthy 7 lbs. 10 oz.. We can't believe that we have been so blessed with this little boy. About a week after Brady was born we noticed that the left side of his face was turning pink and a few days later it became bright red. Our family doctor refered us to Children's Hospital to a dermatologist that specialized in birthmarks. Once she saw Brady it was determined that what he had was a large facial HEMANGIOMA. We had just entered the unknown...

It Keeps Growing and Growing

As the weeks went on the hemangioma became darker red and more swollen everyday. You can't describe the feeling of seeing this happen to your baby and not being able to help him. But regardless of what was going on, our love for Brady continued to grow and grow! Everything he did was cute and milestone was celebrated.

It's Christmas!

Christmas snuck up on us...Brady was only 3 1/2 weeks old and we had already been to a dozen doctor appointments. The plan this far was to wait to start any treatment until the hemangioma was causing problems, specifically with his left eye. If the swelling closed his eye, Brady could loose his vision. We knew it wouldn't be long before something was done, it was getting bad fast. But with Christmas here it helped lift our spirits. Santa brought Brady all kinds of fun toys...he must have been good!

The "C" Word

On Jan 2 2009 Brady had another appointment at Childen's Hospital, this was the day I feared. Doctors had determined that the swelling was becoming a danger and then they dropped the C word...chemo. The plan was to begin a chemotherapy called Vincristine. It is still in the testing phase of use so Brady joined the trial.

Week 1 of Treatment

We all drove down to Milwaukee the night before his 1st day of treatment. Aunt Sandy lives only a few miles from the hospital. She made us up a room to stay in for whenever we need to crash there. On the way down we stopped at Cabela's because Brady needed a present for being so brave through this whole thing. We found a dog that looked exactly like our dog Romey. In the morning a PICC line was put into his arm. Its a cathedar that will remain inserted throughout the 12 week treatment to give him his medications and to draw blood for labs. After that was placed he had an MRI done to see how much the hemangioma grew inside compared to the first MRI we had done. He has an MRI 3 times in this trial. Then he got his first dose of Vincristine. It was a long day for Brady.

After 6 Weeks of Treatment

Every week since Bradys been born hes seen some sort of doctor. We've seen at least a dozen doctors such as oncologists, dermatologist, ENT, cardiologist, optomologist, and so on. Finally we're gettin somewhere. After being on chemo for 6 weeks the results are amazing. The swelling is almost completely gone. Brady can open his left eye normally now and his left ear is completely open. The coloring will be there for a while but will go away after about a year of age. The chemo has some minor side effects like poor appetite, constipation, and nausea. But we give him medicine to take care of that. But all this aside, Brady is a very happy baby. He's starting to laugh when I tickle him. He is very alert. His bright blue eyes are always looking around. He spends alot of time on his tummy now. Pretty soon his little baby pushups will turn into crawling. The doctors are amazed at how well this is working so far. They were blown away at his latest MRI because the stuff wrapped around his optic nerve, his ear canal, and his throat is almost completely gone.