Saturday, February 28, 2009

Bowled Over!

Once again today I was completely in awe of the generosity of my community. Our 2nd bowl a thon was held, this time in my hometown. Words will never be enough to thank my friends from Jackson school for their hard work in putting together yet another wonderful event. I stand in amazement at the way God is providing for our every need...

I wanted to share a picture of Brady minus hair! I have to say, he has still maintained his handsome charm:) He continues to be nauseous in the morning, but after his dose of Zofran, it seems to improve. He is certainly moody lately, but we just keep loving him the best we can. No other big news today. I did want to share a bible verse that we have kind of "claimed" to represent Brady and his journey:

2 Corinthians 5:7 For we walk by faith, not by sight.
Each step of this journey is a walk of faith. We had no way of seeing this coming in our lives and we have no way to predict what will happen next. We are praying continually that each day will draw us closer to Jesus, each day will bring less reliance on what we think should happen, and more faith in what God wants to happen.

Friday, February 27, 2009

What's New Today

Not too much to report from the Williams household today. Brady continues to hold his own. I think he is queasy at times, but isn't throwing up. He had a little diarrhea, but overall seems pretty happy. His appetite is fairly normal overall. The last cycle his counts didn't drop until around Day 9, so we can expect that the middle of next week he will probably be most sick.

I'm planning on stopping by the bowl a thon in Oakfield tomorrow. We continue to be in awe each day of God's provision for our family. He has placed so many wonderful people in our path along this journey. People may think they are just donating money, or dropping by with food, but truly every act of kindness that has been shown to us has been a tremendous source of encouragement on days when we really need it. We truly feel blessed..

Thursday, February 26, 2009

New Pictures

Brady is doing great on his first day home. He did throw up just a little before breakfast, but since then he has been okay. He is less active than usual, but is eating quite well. I have to share an amazing story with you! Today Matt saw Brady sitting in his rocking chair in the living room. When he and his mom went back in the room, Brady had somehow gone from his rocking chair into our large recliner. He somehow must have climbed from one chair to another. I just wish I could have been a fly on the wall. What a boy...

I heard from the oncologist today with the results of his catecholamine level tests. I guess the accurate name for these tests are HVA and VMA (I am learning so many new acronyms!) The test was done just before his 2nd round, so the results reflect the effects of only one round of chemo. BOTH LEVELS HAVE GONE DOWN!!! This is yet another sign that Brady is fighting against this cancer! The doctor said a great result would be a 25% reduction of the levels, his was a little less, but after this round they are sure to go down again! God is so good...

That is all for now. We are having fun visiting with my friend Julie. We all took a walk today and the fresh air felt wonderful! There are a few more family pictures up on Laura's blog. Her work really takes my breath away. You can check them out at

Wednesday, February 25, 2009

We're Home

We arrived home at about 3:30pm!!! Brady tolerated the chemo so well again! No nausea or vomiting so far. Brady took a nice nap all the way home. His hair had been falling out all day, all over the place. We decided to just buzz it into a really short brush cut (almost shaved). So, it's gone and we are moving on...

We had many consults with different doctors today. Here is a summary:

1. Neurosurgery came in and looked at his back incision. Everything looked good, his reflexes are better than before surgery. He is continuing to amaze us by doing new things all the time. Some are just subtle differences in the way he moves. Other times he just seems more daring, like trying to stand for a second independently.

2. The Physical Therapy department came in and we discussed what options there are for treatment for Brady's gross motor delay. There is a pediatric PT who works at a Strong PT clinic that is an option. We also contacted CP of Rochester and discussed their facility. Early Intervention is still an option as well. So we continue to try and figure out what will best suit Brady's needs.

3. We got the results of the final histology report from the tumor. This test came back negative for chromosomal defect. Basically, it is another plus in Brady's "favorable" column. This was BIG news! Praise God!

4. We had a detailed meeting with the oncologist. Today I was finally ready to see the cancer on the scans. She brought in a computer and showed us the MRI from the day of diagnosis. It was absolutely shocking to see the tumor and exactly how much his spinal cord was being compressed. If you think of his spinal column like a circle, the actual spinal cord itself was a tiny dot just pushed way over to the side of the circle by this tumor. We also were able to see the mass that extends into Brady's chest wall behind his lung. She compared the size of that mass to a golf ball to plum-size. Until today I just couldn't bring myself to look this disease in the face. I'm so glad I did today though, as I feel so much more knowledgeable about what we are dealing with.

5. We have appointments for a repeat CAT scan and MRI on March 5th at 8am. These will be done at the same time under general anesthesia. These tests will show how the tumor has changed due to chemo (We're praying for BIG change!) We will find out that evening or the next day the results of those scans.

6. Our oncologist has contacted Dr. Laquaglia at Sloan Kettering (he is the leading NB surgical expert). We are waiting to hear back, but the goal is to take our two scans down to NYC the week after they are done and meet with him. We aren't sure yet if surgery will happen in that same trip, or if it will be scheduled a few weeks later.

So, there is a lot to process today. I really like days like today though, I feel like we are getting somewhere. A week from Friday we will have our answer about what the 2 rounds of chemo have done. Our doctor is hopeful that the chemo and the upcoming surgery could be enough to get rid of the cancer, but also cautioned us that further chemo/surgery may be necessary.

My friend from New Mexico is flying in tonight to spend a few days with us. It should be a breath of fresh air for all of us and hopefully a chance for some fun!

God continues to faithfully hold us in His hand, I hope it is crystal clear that He continues to work miracles in Brady's life everyday!

Giggles and Graham Crackers

It's 8am..Brady slept on and off all night until about 7:30. He talked during his sleep all night about "socks on!" No that he is awake he is sitting here with me just being hilarious. I LOVE this boy! Everytime he notices the tubes attached to his Broviac that are giving him fluids he says " no!" He is playing with all of the medical equipment left in the room from during the night. Right now he has a paper tape measure in his mouth and a graham cracker in his hand. I tell you, this child's silly side amazes me! No signs of nausea this morning. He was moaning throughout the night quite a bit, but I decided to stick by the choice not to give the Decadron. If we had, he wouldn't be this happy boy this morning.

The rounding doctor told me that CT and MRI will be scheduled for two weeks from now (both done under sedation). A follow up meeting about results will be 1-2 days after that. Neurosurgery is stopping by this morning to look at his back. Someone from physcial therapy is coming by as well to look at him. So, a busy morning here, wanted to share some sunshine with you all this morning!

Tuesday, February 24, 2009

Thank you friends

You'll notice more blogging during hospital times. Let's just say, there's a lot of down time...too dark to read, so I have my prayers and my computer:)

Thank you all for your comments after my last post. I struggle sometime over whether or not to let it all out and be honest about how I'm feeling. I'm glad to know I can do so and be uplifted. There are so many dark emotions that come along with this journey...ones I never knew I would feel in my life. But like I keep saying over and over, through it all we continue to be blessed too! Sometimes I pray for that..."God I know today there will be trials for Brady and our family, I pray that the small blessings You send will outshine our trials on this day." Simple, maybe too simple, but sometimes that is what my heart longs for.

Matt just left:( Brady woke up upset about an hour and a half ago. We had to take the dumb bag off of him that was "collecting" his pee. Who would want to wake up to that? It took him about an hour to settle down again. He is sleeping now. One drug down, two more to go. I might stay on the computer for quite a while as the thought of climbing into my pull-out chair-bed is enough to make me want to blog all night!
ps Did I mention we have a private room? It was the only space that opened up...thank you God!

We're Here

We made it here at about 6:30 (We were half an hour late due to a stop at Mc Donald's for chicken nuggets---so worth it!) We got settled in the room for about 30 seconds before the nurses came in and wanted him stripped down to weigh him, and to do vitals. Brady really remembers this place and instantly started pointing at the door and saying "out." That was really heartbreaking. We met with one of the oncologists (not our usual one) and I feel bad for her because I just started asking all of our questions. I asked when they would be retesting his catecholamine levels (a urine test that is elevated in people with neuroblastoma--his levels should be decreased if the chemo is working). They put a bag on him to collect his urine, not sure when we will have those results. They told us they would be giving him decadron (the dreaded steroid!) and I just looked at her like she was crazy. Decadron is used as an antinausea med, last time he was taking it prior to starting chemo as a drug to help with post operative swelling. By the time the chemo started his dose was very low. They wanted to start with a small dose and increase to a huge dose tomorrow. If you remember though, he had a lot of adverse side effects (sweating, irritable, swelling, weight gain due to increased appetite). Let's just say we went back and forth on this one with her, and it was decided that he won't be getting it unless nausea is a problem. Our whole philosophy is that he did so well last time, let's just do the same drugs again. We don't want to add anything new unless we have to. I also "fessed up" that I had called Sloan about the possibility of doing the scans there. They looked surprised that we would do that and said they don't really see the benefit. I'm going to see if Sloan calls back tomorrow, if not I'll try again. I guess that decision will be ours.

I asked the doctor about hair loss. She said it would start anytime. After she left I put on Brady's pjs and I noticed hair all over me. It is Brady's hair, it all of a sudden started falling out once we got here. I just broke down at the sight of it (I left the room of course). You are probably thinking, "it's just hair, it will grow back, you knew it was going to happen, why are you so upset?" I just have a hard time knowing that he will now officially "look sick." On days he is feeling well it is so easy to let my mind forget that he has cancer. He looks like Brady, plays like Brady, smells like Brady... Now he won't look like Brady. I've seen cancer change people I love before and they don't look like themselves and it is a daily reminder of the illness inside of them. So that is why it hurts me so.

Matt is here now. He and Brady are snuggled in the chair watching basketball. Brady is getting 2 hours of fluids before the chemo will start. Matt will head home in a few hours. We are praying for a peaceful night...

No Room for Brady...YET!

We got a call from the hospital...they are full on the wing where Brady is supposed to be. They are hoping to send some kids home today and will call us later IF something opens up. I'm frustrated and annoyed that his treatment may have to wait until tomorrow. Our plan is to call our oncologist if we don't hear from them by 2pm. Can't we Brady go to another wing/floor? There are MANY kids on that wing with RSV right now, they have to be in private rooms secluded from everyone else. It is just crazy to me to think that they put cancer patients in with kids that have illnesses he can easily catch. Ughhh....

I'll update more when I can later.

UPDATE: 3:45 pm I just got a call from the bed coordinator. It looks like we will have a bed today. She is going to call around 5 and let us know if it is ready. So Brady will be able to have chemo tonight. I should be relieved but now I feel sick. Right now he is a happy boy who is playing in the sunroom like he should be. I hate knowing he will not be in his bed tonight. Yes, I know it is what has to be done, I'm just going through my mommy meltdown right now. Matt will be bringing us up and staying until Brady gets settled. Please pray for Brady tonight. This chemo NEEDS to work, it just has to be doing it's job. Pray that we will continue to lean upon our strong tower in these days few days.

I'll be updating later tonight...

Monday, February 23, 2009

Plan for Round 2

What a day! Today was a blur of activity...just trying to tie up some loose ends before we head back to Strong tomorrow. We are in the process of switching pediatricians, so I needed to write a few letters to get that process going. Brady's nurse came to change his dressing, flush the Broviac, and draw blood. That meant I needed to give him a bath ahead of time. I called Strong later in the day to get blood results and find out the plan for tomorrow. His blood levels look good to go ahead with chemo tomorrow. They will call us in the morning to tell us what time to come in. The plan is to give him 3 different drugs all tomorrow night, hopefully while he sleeps. They hang the drugs on a pole and they go directly into his system via the Broviac. I begged our NP to try and get us a private room. I can't tell you how much privacy means when dealing with something like this. She said she is going to see what she can do. I also asked when we will be able to repeat all of the scans to see how the tumor has changed due to chemotherapy. The NP is going to check with our oncologist, but she said it could be anywhere from 2-6 weeks post chemo. I can't imagine waiting a month or more, that will be agony. In the meantime I called Sloan Kettering myself. I want to know if they think it would be advantageous for us to go to them for the scans. I have heard that they have more fine-tuned scans and that their radiologists who read them are top-notch. I also wanted to know if they recommend a different timeline between chemo and scans. I'm expecting a call back tomorrow. Our plan is still to go there for any post-chemo surgery.

So it was a busy day. Thank goodness I had so much help during the day. Sometimes our house is a revolving door of people...but I wouldn't trade anyone for anything!! Thank you mom, Pam, Sandy, and Ron for your help today. I will update at least once tomorrow once we are settled at Strong.

One more thing...if you haven't already, check out Laura, our photographers blog, at She wrote some very sweet words about our family and also put up a darling picture of Brady and I. I treasure that picture already. It captures what I love most about Brady...those blue eyes and chubby hands. He is also clutching a goldfish in his hand, that is SO Brady to hang onto something like a treasure. What a treasure he is...

Sunday, February 22, 2009

Sunday Thoughts and PICTURES!!

Well, the Williams family has a picture...hooray! Our new friend Laura came to our house this morning and did a fantastic job capturing some picutes of us. She was kind enough to share some with me before they are printed and has given me permission to put them on the blog. She is an up and coming photographer, please check out her blog at to learn more about her photography. We ended up taking most of the shots in our bedroom because of the beautiful natural light and fact that there is no "kid junk" to be found! You'll notice Eli and Cara doing their silly smile in one of the pictures. I LOVE the way they turned out. It is impossible to get catalog-smiles from a family of 6 with 4 under 2, so we are more than satisfied with the more natural look.

We were done with the shoot by 10, so I packed up Cara and went to church. I've been really missing time to praise and worship, so it did my heart so much good to be there today. The teens led the service and it was a wonderful blessing to see them using their talents to the glory of God. One of the songs we sung was "Jesus, Lover of My Soul." I've always loved this song, but never more than this morning;

Jesus, Lover of my soul.
Jesus I will never let You go.
You've taken me, from the miry clay.
Set my feet upon the rock, and now I know.
I love You, I need You,
though my world may fall, I'll never let you go...

So many people say "how are you doing, how are you handling all of this." Truth be told, I feel like our world has fallen. I'm trying every day to just put one foot in the front of the other. I'm trying desperately to choose to focus on the good God is putting in our lives: the wonderful miracles I have in Eli, Cara, Brady, and Allie (Matt too), the amazing support of friends, family, and strangers, and the hope I find in God's promises. As we approach this second round of chemo, please be praying in the following areas:
1. Pray that God will comfort Brady while in the hospital.
2. Pray that the chemo will destroy this cancer beyond all expectation.
3. Pray that Matt and I will continue to find strength in God and in each other.
4. Pray for our wonderful parents and friends who are helping us take care of our precious family while we are away.
5. Pray that we will have a clear direction after this round of chemo pertaining to surgery at Sloan Kettering versus more chemo.

That's a lot of prayers, but I know God is listening if we just keep them coming!!! Love to all of you...

Saturday, February 21, 2009

Say Cheese!

Tomorrow is going to be a monumental day in the Williams family. We are having our first ever professional pictures taken of our family. Can you believe we have never ever had a professional picture taken of our children? A local photographer is coming to the house to try and capture a picture of all 6 of us and some shots of the kids. This was something that has been on my mind since Brady's diagnosis and it is amazing how God just answered this silent prayer in my heart:)

Of course trying to coordinate what all 6 of us will wear, and only making plans to do this last night, made things a bit challenging. I think we are all going to wear white shirts and jeans. I had to make a run to Batavia today and try to fill in the gaps in my plan for our white outfits. Luckily WalMart and Target came through for me as always! The baby is going to wear pink, so I have pink sweaters for Cara and I as an option too. Planning matching outfits in 24 hours was certainly a challenge, even for me! I'm just so excited to have some pictures to capture this time in our children's lives.

We are starting to make plans for Round 2 of chemo that will begin on Tuesday. The nurse is coming to the house Monday to do bloodwork and change Brady's dressing. That way we avoid having to do it in the hospital. The hospital will call us Tuesday morning to tell us when we need to arrive. I'm just hoping there will be a private room available for us. Last time was so challenging and at least we had privacy. I can't wrap my head around dealing with chemo and tyring to get Brady to sleep all while sharing a room with another child.

Hopefully I will be able to share so amazing pictures with you in the coming weeks!

Friday, February 20, 2009

Friday Update

We are so excited to be having my brother and his family over for dinner tonight. The cousins haven't hung out together since Brady's treatment began due to his counts being low. Now that they are back up, we wanted to get together knowing that next week they will go down again.

We are noticing Brady using his legs in new ways everyday. These aren't major changes, but in our eyes they are amazing! Brady has certainly regained all of the movement he had before surgery, and in many ways seems to have increased movement. He is crawling, pulling to stand, and cruising. Right before his diagnosis we noticed him dragging his legs when crawling and falling over from time to time when sitting on his knees. We have not noticed this at all since the surgery...praise God! Some people ask if he will just be able to walk now that the tumor isn't compressing his spinal cord. He is not able to just get up and walk at this point. For many months he has developed "bad habits" to support himself when cruising. In order to maintain balance he relied on his knees for stability which has caused him to have bad hyperextension in his knees. This is a very bad position for his knee joints. His leg muscles are very underdeveloped due to lack of use. He has poor balance and proprioception. All of these deficits will need to be addressed with intense physical therapy before walking will be possible. Also it is very likely that Brady will have additional spinal surgery after chemotherapy, so we will have to keep reevaluating his progress.

We asked Strong what type of therapy would be available to Brady now that he has a spinal cord injury. I still need to do more research on this, but it seems as though there is not a lot available that is covered by insurance. So we are still looking into some intensive programs that we originally considered when we thought Brady had CP. One program involves Therasuit therapy. There is even a chance that Matt could get trained in this so we could do it at home. So in the midst of cancer treatment we are also keeping our options open for helping Brady learn to walk.

We wish a safe and happy weekend to all of you:)

Thursday, February 19, 2009

My 4 Rays of Sunshine

No big news on the Brady front today. He had blood drawn, but I didn't get a call about the results. I will call in the morning just to make sure things are okay. His appetite is back to normal (cookies and all!) He is very clingy and whiny this week and I'm not sure what is up. I'm trying to find a balance between spoiling him rotten because of how sorry I feel and making sure he doesn't turn into a total brat because of all the extra attention:)

We are dealing with all sorts of new behavior at our house. The terrible 2's are fast approaching, bringing with them tantrums, hitting, crying, and overall disobedience. With all of the negatives though, come so many positives. They are saying new things constantly. They understand everything, I mean everything. Yesterday as I finished flushing Brady's Broviac, Cara yelled from other room, "Tubies all done, Hooray!" We are trying to affectionately call the Broviac, Brady's tubies. Maybe it is the fear of losing Brady, but these days I'm just loving my four sweeties more and more every day. One of my favorite things is to see Eli, Cara, and Brady watching out the window when I'm leaving to go somewhere in the van. Seeing their sweet little faces pushed up against the glass is so precious. Once in a while I get a wave or a kiss blown my way. I LOVE this part of being a mommy so much. I love seeing them from a distance, somehow I can just soak in all of their "wonderfulness" by looking at them through that window! Allie continues to be the sweetest baby I've ever seen. Her nickname in our house is Dreambaby! I wanted to give you all a smile tonight and share some pictures of my wonderful crew. From top to bottom are Eli, Cara, Brady (a little chubbier than usual---that is a pic from the hospital when he was on steroids), and Allison. Edited: I just found two great pictures that show my crew looking out the window, both from inside and outside.

Wednesday, February 18, 2009

Daily News Article

The Batavia Daily News came to the event yesterday and did a very nice job telling Brady's story. Here is the link to the article:

Update: I have the printed copy of the paper and the story that was written was excellent. The journalist did a fantastic job telling Brady's story and giving resources for people who want to know more. I have already heard from a local mom whose son is a NB survivor! My prayer is that our story can help someone else in a similar situation!

Tuesday, February 17, 2009

Bowling for Brady!

Whew! What a day today was! Today was the Bowling for Brady benefit that was organized by my friends at Jackson Elementary School. A little background my "former life" before having 4 kids in two years, I worked at Jackson as a special ed teacher. I have actually been on maternity leave for 2 years now, but the many friends I made at Jackson remain a big part of my life. This amazing group of people have stood by me through my triplet pregnancy, helping me handle my mom having cancer, helping once the triplets were born, supporting me when I lost my dad, having another baby, losing my grandma, and now dealing with Brady's cancer. I can't say enough about their dedication to my family and the great connection I feel towards the Jackson school community!

Walking into the benefit was such a humbling experience. There was a huge turnout...probably between 400-500 people throughout the whole day. It was such a fun environment and I felt like I could put a smile on my face and celebrate the wonderful generosity and caring spirit of my friends. How blessed am I to know that we have so many people behind us, whose hearts are overflowing with concern for us. THANK YOU to each and every one who helped plan this event! THANK YOU to everyone who donated something to the event! THANK YOU for everyone who came out and bowled for Brady! We just feel so blessed to be on the receiving end of such amazing generosity.

Monday, February 16, 2009

Woo Hoo

After calling and bugging the lab twice today for results, I just got the call. Great news!!!! Brady is over the hump for this round, meaning his counts are back up, way up!!! He is no longer neutropenic, which means NO MORE SHOTS for this round...yay!!! I hope you are hearing my excitement:) It's amazing that the nurse draws his blood at our house at 11am, then by 4:30 the results are at the lab at Strong. Then by 5pm I can share all of the good news with you.

Brady had a great day today and is eating a little more every day. Let's pray for an uneventful week or so before we begin Cycle #2. Praise God!

Sunday, February 15, 2009

Peace in Chaos

I love it that Matt has been home with us for most of the past 3 1/2 weeks. He is heading back to work tomorrow until Brady's next round of chemo (Feb 24th). Everyone who knows us, knows that he is an amazing daddy. He does way more than his fair share and always has. I don't have to ask, he just does. Yes we squabble about the details (anyone who knows us, knows that too!) but he is the rock of our family, and without him I just don't know how I would make it. I seem to have little break downs every few days and his strength in my weakness just amazes me. I pray every day that I can be that way for him. Where was I going with this? Oh yes, when Matt is home, he always turns the radio on in the play room in the morning. We listen mostly to K-LOVE a national Christian station. Recently we both starting talking about this song Whatever You're Doing by Sanctus Real. It's an amazing song and it just speaks to us both, right in the middle of all this. Here are just a few words:
Whatever You're doing inside of me
It feels like chaos but somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something Heavenly

I think those words can speak to so many of us, no matter our circumstance. My battle every day is surrendering to what I can't see. I can't see the cancer inside Brady, I can't see the chemo working in his body. I can't see the future for him and for our family. I just keep praying that God will give me the courage and the faith to give in to His plan, let it go, and find that peace in chaos. Somedays it is easy to find, other days I have to look a little harder.

Not too much to update on with Brady today. His appetite is still very off, he will eat a lot of some things, like graham crackes today. He does not eat a lot at mealtime. His sweet spirit continues to bless us all. The daily rituals involving his Broviac are very difficult for him, they are really the only time he cries. I went and bought he and Eli matching baseball hats today. His hair could fall out anyday and I knew all of last year's hats would be too small.

Please pray for us as Matt goes back to work tomorrow. Pray for Matt too:)

Saturday, February 14, 2009


I'm sitting here in the kitchen listening to the sweet sounds coming from the living room. In there is my family, all 5 of them. I hear the baby's swing swaying back and forth as she sleeps. And I hear the precious sounds of my three "big babies" as they watch their Praise Baby DVD and drink their milk cups with daddy. They love to name everything that they see come on the screen. I love these sounds, I hear their precious voices in my sleep. I had to step away from them because it is in these times that fear grips my heart. I guess that fear led me to write and ask you all to keep praying. Since this stomach illness began, I've been praying for everyone to have relief from it and for Brady to feel as strong as possible. For the next few days I'm going to focus on praying that this chemo is destroying this terrible tumor. I'm praying that God's mighty hand will cause this tumor to shrink beyond all expectation.

It must be clear to all of you by know the awful way that having a child with cancer changes your emotional state from day to day, even minute by minute. One day I'm talking about how great it will be when we all go to Disney someday, the next day I'm silently fearing that I'll never see Brady get on the school bus. Cancer is such an evil disease that every day tries to pull me down. It's times like these when I'm so glad I can turn to God's word for comfort and peace. That is for sure what I'll be doing tonight since I seem to be stuck on the doom and gloom:( One amazing book I just finished reading is When God and Cancer Meet. It was sent to me by Cozy Quilt Ministry from Farmersville NY. If you know someone battling cancer, it is a must read!

That's all for now, please keep praying! By the way, those sweet sounds from the living room? They just turned into "Guys, knock it off, stop throwing your cups! That's it, time for night-night!" Ha!

Friday, February 13, 2009

On the Mend

Hi all!
I see my faithful husband took over blogging duties while I was "away." I'm on the mend! I've held down two small meals and think I've seen the worst of it. Some good news to report: There was no vomiting at all, by anyone, at anytime, today in the Williams family...Hallelujah! Brady had a good day today. I can't put into words the many ways in which he amazes me each day. As my mom put it, his whole life has been intruded upon. With the daily Broviac flushes, GCSF shot, and his every other day bathing ritual, he endures quite a bit. In between these upsetting times for him, his sweetness and wonderful personality melt my heart all day long! He has a lot of anxiety when we flush the Broviac. It is pretty obvious that he has an uncomfortable sensation as I'm injecting the saline and Hep/Vanco into the lines. It is a difficult thing for a mom to do. I also did the same thing for my mom when she had lymphoma. At the time I was pregnant with the triplets, and never in my life did I imagine I would be doing the same thing for one of them someday. Brady's appetite continues to be off. He is so sweet about it though. He just sits in his highchair and kind of plays with his food. We try anything/everything to just get some food in him. Tonight he really enjoyed a roll and his milk...fine with me!

On a more uplifting note: Have you checked out our blog tracker to the right? It is a map that tracks all of the "hits" we get on the blog. People from all over the world are reading about Brady!! I just keep asking myself, "How do these people know about us?" It is so amazing! If you click on the map it will show you a list of recent locations of the people viewing the site. Today I read that someone in Rome Italy read about Brady! I guess I need to step up my about pressure!

I was really leery at first about starting this blog. Putting my thoughts out on the web for anyone to read was a little unsettling. But I can't tell you how wonderfully therapeutic it is to be able to share our struggles and blessings from day to day with all of you. We have been able to add so many prayer warriors to our team by using the internet! The comments of support that we read each day give us so much encouragement to keep going. I've been thinking a lot lately about awesome it will be to let Brady read this blog someday. I can't wait for that day...

Now It's Official

This is Matt in the blogosphere. Now everyone in our family has had this crazy virus, I think it's West Nile or SARS. Megan came down with it last night, but is feeling slightly better today. Even baby Alli seemed to have a bout with it last night. She threw up once in the swing, then later all over her daddy - how fun! Allison appears OK today so far.

Brady seems to be doing a bit better today. He slept great last night and is eating a little more. He is certainly having a harder time fighting this infection because of his low white blood cell counts due to chemotherapy. On Monday, his ANC (a measure of neutrophils which are a type of white blood cell) was 14,000, on Thursday it was 1,400 and the nurse practitioner said they are expected to basically go to 0 over the weekend, making him very susceptible to infection.

Please pray for Brady and Megan to recover from illness and Brady not to catch any new ones.

Thursday, February 12, 2009

Sickness Continues

Here is the report of the day: Brady was doing okay all night and today. Then at snack time he drank quite a bit and threw up and had diahrrea. We got the blood results from what was drawn this morning. His counts are down dramatically from Monday, which is what is supposed to happen. It is still unsettling given all the "bugs" in our house right now. I too went to the doctor becasue my glands are swollen, it is just viral, but contagious none the less. My stomach is queazy as I write this, not sure if I'm finally getting it, or if I'm just nervous:)

So, at this time we can not accept visitors due to Brady being close to neutropenic. That basically means that his white blood cell count will be so low that he is very susceptible to infections.

We are hunkering down here at the Williams house. Matt is scheduled to work a half day tomorrow. Mom will be here with us. Please pray for Brady during this tenuous time.

Wednesday, February 11, 2009

Well, we made it through another day. The big news today is that Matt caught the stomach bug bringing the total number of Williams' affected to 4. Thank God for my mom who spent all day here with me. I think she must have done 10+ loads of laundry. Eli seems to be back to normal, as does Cara. Brady threw up once this morning and hasn't wanted to eat or drink much all day. He looks terrible and just isn't himself. I'm anxious for his bloodwork tomorrow as I'm pretty sure his counts are starting to drop. Matt and I had to do a dressing change for his Broviac today for the first time on our own. It is a tedious process that takes 2 of us, one to hold him down and the other to take off the old dressing, clean the area, and apply the new one. Add that to Brady's daily flush of his Broviac and his daily GCSF shot and he has quite the busy and stressful day!
I'm praying that I am spared this awful flu because there is just so much to do every day. Please be praying for Brady as we head towards what could be a bad week for him. Pray for endurance for Matt and I, and the family members helping us.

Tuesday, February 10, 2009

Barf-o-Rama 2009

You are all going to start thinking I'm nuts over here, but this is all true, sad to say it, totally true. Matt and I went to my MOPS meeting tonight because it was couple's night. We had a GREAT time and really needed the "us" time. We got home at 9pm and by 9:30 both Brady and Eli were throwing up in their cribs. It is now 11:25 and they have been going strong for 2 hours. Brady has thrown up 6 or 7 times and Eli 4 or 5. I totally freaked out because of Brady and his immune system. I called the hospital right away to see what we should do. Our doctor said that because his blood counts still haven't dropped yet, that he should be okay. (just as I'm tying, I had to take a break because Eli threw up again). Matt and I are so exhausted...mentally, physicialy, in every way possible. Our days have been so chaotic since we have been home. I was "lucky" today and spent the day with my mom cleaning out my grandma's clothes from her house. Although the mental break was refreshing, coming home to this just makes me feel so depleted.

Thank goodness Matt is finding the humor in it all. He made me laugh several times as we worked together to handle the puke, poop, and massive amounts of laundry. What would I do without him? Thank God one of us is strong when the other is weak.

Edited to add: Just listened to a voice mail from a dear friend out in New Mexico. She wanted to let me know that her and her family did something in honor of Brady and our family today. They took pizza, cookies, and other goodies to their local Ronald Mc Donald House for the families that are there(check out the bottom of the blog to see why this means so much). They don't know anyone there, they did this to bless others in honor of my little boy. I SO needed that right now...what an amazing way for God to speak to my heart tonight. That totally reminds me of the lyrics to the Casting Crowns song "Praise you in This Storm"

As the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

Goodnight for tonight...thanks Julie

Monday, February 9, 2009

A Long Night

Okay faithful readers...our saga continues! Cara was up all night throwing up! Poor honey...she just had the stomach bug before Christmas and now she had it again. By morning she seemed to be over it. She ate a little breakfast and played well all morning. After sanitizing everything in sight, I'm praying that the rest of us will be spared, especially Brady. A sickness like that would be a big deal for him right now given that his immune system is compromised.

I connected with a wonderful mom today who is local and has a son who survived brain cancer. His story is one of miracles...I'm still trying to process all that she told me. Our situation with Brady is terrible, every day I have to tell myself to just keep putting one foot in front of the other and get through THIS day. However, there is always someone suffering more than me. There is always someone carrying a heavier burden than I am, even given this frightening circumstance. This mom and her amazing son taught me that today.

So instead of asking you to pray for Brady today, I want to ask that you join me in thanking God for the blessings and miracles he is working in Brady's life today:
1. Thank you God for Brady's amazing team of doctors.
2. Thank you God that Brady's cancer is treatable.
3. Thank you God that Brady is laughing and playing today.
4. Thank you God for our amazing support system!!
5. Thank you God for giving us hope for tomorrow!

Now, don't think I won't be back tomorrow asking for prayer, you know I will! But today, I'm going to focus on thankfulness:)

Sunday, February 8, 2009

Brady did great overnight (everyone did actually!). Things were so chaotic here this morning. The kids had a fun morning playing, it's amazing to see Brady jump right back in. For the most part they do their own thing, but watching those times when they interact is precious. They each have a rocking chair in the living room, and back when Brady was starting to have trouble with his gross motor skills, it took him a few weeks to figure out how to get into his chair by himself. Then he got really good at it and could climb up and down with ease. This morning I watched him crawl towards his rocking chair, looking rather determined. I wanted so bad to go and scoop him up and put him in it so I didn't have to see the struggle I knew was coming. I resisted and watched him as he tried to push off of his right leg to stand. His right leg seems a lot weaker and less coordinated. He tried 3 or 4 times without success to pull up. But THEN...he did it! He pulled to stand against the chair, then climbed right in. He turned himself around, sat down, and just looked at me with this sly smile...those moments are amazing. What a proud mommy I was!

A few of you have been asking about Matt's work schedule. He has been off since Brady's diagnosis, about 2 1/2 weeks. Certainly, I don't know what I would have done without him during this time. Right now he is going to be home for the first part of the week, and probably go back by the end of the week. He will take time off as needed I guess. There is just no way to predict things in a situation like this. Brady's blood counts are expected to drop by next weekend, so infection and needing blood transfusions are good possibilities. I think we are planning on having him off of work during hospital stays as well.

We have been so blessed (I know I keep saying this, that is becuase it is true!) by everyone who has reached out to help us during this time. We are still going to need to lean on those around us during these next months, and it is so comforting to know we have to many willing to help. Unfortunately we can't accept extra visitors right now, especially children. Chemotherapy compromises Brady's immune system, so any simple infection can be very serious for him. We making every effort to keep sickness out of our home, which is especially difficult with 4 kids under 2!

One more thing...the website I have mentioned before will be up and running very soon. I will have a link to it from this blog. The website will house all information regarding fundraising and will coordinate all of our "helping hands" in areas like meals, groceries, and volunteers. My brother, his wife, and sister in law have been working hard on this and I can't wait to see the finished product!

Saturday, February 7, 2009

Home Sweet Home...Somebody call a Plumber??!?!?

Well in true Williams fashion, my perfect little picture of dinner with the whole family didn't happen. We were FINALLY discharged at 3pm, and were so anxious to get home. We left with pages of instructions and 6 bags of stuff that had accumulated in Brady's room all week. He took a short nap on the way home and once we arrived he jumped right back into the swing of things. Our parents were here to help, thank goodness. I immediately got overwhelmed by all the "stuff" and headed down to throw in some laundry. To my dismay I found two drains in our basement overflowing with what I will call "not clean water." Nothing like timing huh? So...after an hour or so of Matt and his dad giving it a shot, we all decided we needed professional help (in more ways than one!!) Thank God we were able to get a plumber here at 8pm on a Saturday night (thank you Bill and Lori!!) A few rounds with a power snake and we are back in action. Maybe sewage backed up into the basement is a metaphor for life right now? Well, whatever it was, I'm glad it's over and that tomorrow four slightly sticky kids will get a bath.

Our home nurse will be coming tomorrow at 11am to show me how to change the Broviac dressing, flush the lines (no pun intended), and how to give Brady the GCSF shot. I'm horrified to even think about having to give him a shot. He detests all of these procedures and I just hate to think that part of our day, everday, will be spent doing these things. I don't want him to associate me with this awful stuff. Just another bump in the road...

All 4 Williams kids are soundly asleep. Brady took a while to settle down. I went in a few times and snuggled with him just to let him know I was there. I think he got quite used to falling asleep in our arms at the hospital. A few weeks ago, I wouldn't dare think of rocking one of the kids to sleep. Wow, how priorities have shifted.

I wanted to share a scripture that I read today. I'm meditating on it tonight as we get to enjoy some time together in the next few weeks:
"Come unto me,all ye that labor and are heavy laden, and I will give you rest." Matthew 11:28 KJV

Learning the Ropes to Go Home

Brady had another uneventful round of chemo last night. He slept great all night...what a good boy he is! This round of chemo and the next use different medications, I'm just hoping that he tolerates the next round as well as this one. I can't tell you how amazing his mood is. He is silly, sweet, and just a lot of fun.

We are waiting for him to get his GCFS (Neupogen)shot which will help boost his white blood cells. We will have to continue this shot daily at home until his counts come back up. There is A LOT to learn when you are taking your child home after chemotherapy. We have a great deal of repsonsibility when it comes to changing the dressing around his Broviac, daily flushing his Broviac, giving medications, and eventually drawing blood through the Broviac. I did a few of these things when my mom had cancer, but it sure is different when you are working with a toddler! He doesn't like ANY of it, and it will take two of us to get the job done (one to hold him down and one to get the job done!) The home health nurse will come tomorrow and a few times a week as well. Her job will be to help with caring for the Broviac, drawing blood, and just helping to assess his overall condition.

Right now we are scheduled to be back for Cycle 2 of Chemo on February 24th. I'm realizing what a long process this is going to be. I so desperately want to just fast-forward through this daily grind of treatment and constantly being worried about how he is responding. I want to have xray vision and see inside to know if this tumor is shrinking. The fear and worry creep in during all of these times of waiitng...truly agonizing!

So...we made it through Cycle 1 hospital stay. Brady gets an A+!!! He has even started warming up to some of the nurses and doctors. He is becoming a favorite around here I think (how could they resist?)

We are hoping to be home around dinnertime! Imagine... the 6 of us sitting around the island tonight having dinner...I CAN'T WAIT!

Friday, February 6, 2009

Quiet Time

I think I finally fixed the time/date setting for my posts. It is about 2:30 and Brady is napping in his "crib" next to me. Matt, Brady, and I had lunch together when I arrived, and now Matt is heading home. Those of you who know me, know that I struggle with lonliness from time to time. I just can't wait to have us all under one roof again tomorrow night!!!

Brady has been the most precious boy these last few days. As the steroids wear off, he continues to become more and more like himself. He is giggling, finding ways to be silly, and initiated play (these are things we haven't seen much of since his spine sugery). The plan is to do chemo again later this afternoon (I think) and then discharge tomorrow later in the day after his shot. We are still finalizing plans for the home health nurse and getting the meds and supplies we will need.

As far as how he is feeling, he seems to be great! He is kind of on a normal sleep schedule, just getting to bed later and getting up later. Matt said he slept until 8:45 this morning (only becuase Matt politely told the med student to "get out" when they came to check Brady out at 6:30 am) Go Daddy! He is taking one afternoon nap which is just like at home. He still wants to eat all the time. I have noticed him kind of gagging throughout the day, not sure if he is feeling nauseous, but he sure isn't acting like it. He continues to get Zofran around the clock.

I'm so thankful for these good days. I know it is going to get difficult when his blood counts start dropping, but I just pray for some of these beautiful, good days. I'm eating up his smiles, sweet voice, giggles, requests for cookies, and his gentle spirit. God has truly blessed us with this amazing boy...

Thursday, February 5, 2009

Sorry for the Delay

I know it has been a while since my last post. Our new system of splitting time at the hospital has us busier than ever. Matt came home yesterday evening and spent the night and then spent time with the kids in the morning. He arrived at Strong around lunch time so he, Brady, and I could spend an hour or so together. Then I left to come home. This plan gives Eli, Cara, and Allie some time with each of us too. From their perspective half of their family just up and left!! As much as they LOVE our parents, they were starting to act pretty clingy and needed some mommy and daddy snuggles. Unfortunately that means a lot of alone time at the hospital for Matt and I. It's great spending the time 1:1 with Brady, but during those long nights, it is tough to be alone. The quarrintine continues for our unit, so visitors are still not allowed:(

Just to catch everyone up on the day's events: Brady slept wonderfully last night. He truly slept throughout all of chemo. The next morning he woke up quite happy and HUNGRY! He ate a big breakfast and he and I took a ride around the unit is "his car." When we got back to the room all of a sudden he threw up. It was very sudden, and not all that eventful. He just did it and that was it. Ten minutes later he was hungry again. Come to find out, the oncologist's request that the anti nausea med Zofran be given round the clock was somehow translated by some attending to an "as needed" order. How do 21 month olds request anti nausea meds? Well..Brady got the message across in his own sweet throw up and he is now on Zofran around the clock. Matt said he hasn't had another episode yet. He had his second round again tonight, and Matt reports he was already asleep.

We have had some trying times too. Part of caring for the Broviac in his chest involves a daily flush and changing of the dressing a few times a week. Brady IS NOT a fan of either procedure. We also are learning more day by day of what will be involved in his care once he is home (hopefully Saturday night). We will be working with a visiting nurse who will come by several times a week to draw blood, help change dressings, and just keep an eye on him overall. We will learn to do the daily flushes of his port and to give him an injection daily that boosts his white blood cell count. Because chemo suppresses your immune system, it is likely that Brady will have an infection or need a transfusion before his next round of chemo. The nurse today told us to count on a 2 day admission if this happens.

I'm not sure if I have said this enough, but Matt and I are so uplifted by the comments people leave for us. This blog has been such a blessing. Not only is it very theraputic for me to write and reflect on a daily basis, but we need to feel surrounded by the love and support of our friends and family. Even greater than that is the thought that because of Brady's life, we are able to share our faith by telling our day to day story. Through God's amazing plan for him, Brady is touching people in unimaginable ways! So many people comment on our strength...please believe me that I have felt like just laying down and giving up a million times in the last two weeks. I daily say to myself, "How can I watch them operate on him again? How can I bring my sweet boy back to that hospital? How can I sit and watch that poison slowly drip into his body?" I'm constantly bombarded by negative thoughts becuase I'm a scared mom just like anyone else would be. Please believe us when we say, it is God and He alone carrying us through each day! to bed. I have three babes asleep and that is where I need to be. Thank you all again for holding Brady close to your heart in prayer...

First Night of Chemo

Chemo started last night at 9pm. Brady was already asleep due to some medicines they gave him at 8pm to help calm him a bit. At 9 they came and hung the bag of the first chemo drug called Carboplatin. It took an hour to go in and he slept the whole time. They started the second drug called Etoposide at 10pm. With this one they had to take his blood pressure every 10 minutes throughout the hour as it can cause low blood pressure. He did great and stayed asleep. He really slept all night except for a couple of times when he fussed just a little. There is a flu outbreak on our wing,so no visitors are allowed except for parents. We also can't leave the unit, which is so sad because the highlight of Brady's day is taking "rides" in the car we can push him in.

Matt and I are splitting our day here today rather than be here together all day. Eli and Cara are really starting to seem sad and want to be with us. I miss them very much. Brady will have more chemo tonight, Friday night, and then a shot to boost white blood cells Saturday before coming home.

So far he is feeling fine...most side effects take a few days to kick in from what I hear. Also, each drug is different, so he may experience things differently tonight. Right now he is sitting across from me eating peaches saying "Matt? Matt?" that is how he asks for daddy when he is trying to be funny. He is so precious...

Wednesday, February 4, 2009

Time to Get Started

We have made the difficult decision to go ahead with the chemo option followed by surgery. After A LOT of discussion and praying, we feel peace about it. We feel like we are using both methods conservatively, yet to their best potential. By doing chemo we will hopefully be able to shrink the tumor, therefore improving the chance for successful surgery. A few people have asked us, why not surgery first, then chemo. Brady's tumor involves his spinal cord, so doing surgery first would be very invasive and potentially dangerous. The goal for using chemo first is to reduce the tumor size, making it more easily removed via surgery later. Another big factor in our choice was the thought that chemo works on the whole body with the goal of killing cancer wherever it may be hiding. Surgery is localized...what if something is missed.

Chemo will start tonight after dinner. This has been the hardest decision of our lives. There is no crystal ball here, no sure thing. We made the most informed decision that we could given the information that we were given. This is where our faith comes in. Despite the circumstances we face, despite our fear, despite everything...God is holding us all in the palm of His hand. We have heard from so many people since having the triplets "God will never give you more than you can handle." It is a nice thought, but I truly think that this situation is more than WE can handle. I hope that our family is daily living proof, that in our darkest hours, we can trust God alone to get us through. It is never more than HE can handle!

A Shocking Second Opinion

I'm just writing about this early this morning because I came home last night to sleep. I wanted to write sooner, but honestly, I was just too exhausted.

The oncologist came into our room last night with a rather shocked expression on her face. We knew the only news we were waiting for was the 2nd opinion from Sloan. She said she had spoken to them a few hours ago and that she had been trying to process what they said ever since. It seems their opinion varies greatly from the treatment plan laid about by Strong (which is according to national Children's Oncology Group protocols for treating neuroblastomas like Brady). The doctor at Sloan said that for Brady's Stage 3 NB they would NOT do chemo, instead they would use VERY aggressive surgery, possibly many surgeries, to try and take out the cancer. You are probably as shocked as we were as you are reading this.

Our oncologist said that their opinion shocked her as well. We spent the next 40 minutes hashing out the details, the research, the what ifs. Basically we have been giving two choices, two very different ways at hopefully achieving the same outcome. Each choice carries risks, possible life long consequences. Both hospitals are throwing around the figure 90% as a possible chance at cure (not sure if that includes long-term cure or just short term remission). Here is a a little more about the two options:

Option 1: Go to Sloan Kettering in NYC. Have their surgeon, who does 5 NB surgeries a week, operate on Brady to remove as much tumor as possible. Rescan to see where areas of cancer remain. More surgery.
pros of this approach: No long term side effects of chemo
cons of this approach: Brady's tumor involves his spinal cord. This is VERY risky surgery, just as his surgery was that started this whole process. There is serious risk of paralysis, or other neurological complications, also the risk that comes with surgeries. Our other thought is, how can they be sure they are getting all of the microscopic cancer cells that are in his body? It seems logical to us that relapse would be a strong possiblity with this approach alone.

Option 2: Complete 2 rounds of chemo at Strong. Rescan. The 2 round study says that it expects to see a 50% reduction in tumor size. After chemo, go to Sloan Kettering in NYC for surgery by their surgeon to remove what is left.
pros of this approach: The idea with chemo is that it works on the whole body, hopefully killing any cells, anywhere that are cancerous. By using chemo to reduce the tumor size, we hopefully can improve the outcome of surgery.
cons of this approach: Chemo is poison. The long and short term side effects can be horrendous. Organ damage, infection, and sterility are just a few possible ones.

Our doctor will be stopping by this morning to see what we have decided. Our logic seems to be leading us toward the 2nd option, kind of using both methods in moderation. However, we are haunted that the experts in the field at SK are giving us a different suggestion. We wish we could just go down to NYC and meet with the docotr. But time isn't on our side. We need to choose and get started.

Our need for prayer is simple: God lead us with your grace in the direction we should go.

Thank you friends and family for continuing to follow us on this roller coaster ride. Brady is SO worth it:)

Tuesday, February 3, 2009

It's All in the Details

We survived our first night at the hospital. It was rough, little sleep for Brady or I. The surgery team came in and expects his surgery to be this morning at 9am. I feel like I'm bursting the bubble of excitement about chemo with the info I'm going to share with you. Remember the news about 2 round of chemo being a possibility? Well, it still is. But after a more lengthy discussion with our oncologist last night, it seems the 2 rounds of chemo is a "research study." She explained it like this: 8 rounds of chemo used to be standard for this stage of neuroblastoma in children. Chemo is a poison to your body, and produces many side effects, some can cause long term damage to parts of the body. In recent years, 4 rounds has shown to be successful in treating the kind of cancer that Brady has. Now that 4 rounds has shown to work, they are experimenting with 2 rounds. The thought is that if two rounds can get rid of the cancer, with fewer side effects, than that is a better treatment plan. The problem is, the chance of reoccurrence may be higher with only 2 cycles. So for now we are still in the discussion stage of what to do. We are waiting to hear from Sloan Kettering to see what they would reccommend. It sounds like it will be left up to us to decide.

Brady had surgery at about noon today. He hadn't eaten since dinner last night, and had two rounds of steroids on an empty stomach. Needless to say he was quite a grouchy boy. The surgery was pretty quick and he did well. The Broviac is placed the left side of his chest. He came out of surgery very upset...I was able to be with him in recovery, but he was hurting quite a bit and was just frustrated. Now we are up in the room (about 3 hours later) and he has since had a lot to drink, some goldfish, and is talking and sitting up.

We are expecting to meet again with our oncologist tonight. Chemo might start tonight, or maybe tomorrow morning. It all depends on the Sloan Kettering info and some further discussion. Please keep praying, pray for:
1. Comfort and rest for Brady. His little body is very beat up right now (lots of owies!) Pray he gets a good night's sleep.
2. Clarity for Matt, I, and our treatment team as we decide on the best treatment plan. What tough choices we have to make, we are trusting God to lead us in the direction we should go.
3. Continued strength for Matt, I, and our families as we continue to spend so much time apart. I miss home and the kids so much;)
4. Safe travel for all of us back and forth. I'm thinking about going home tonight and getting some sleep so Matt can stay with Brady tonight. We are realizing that there is little sleep in the hospital with a toddler!

Thank you for continuing to pray for us!

Monday, February 2, 2009

Ray of Hope

I'm starting off with the good news:) 99% of our test results are in. Both the MIBG and the bone scan show no evidence of cancer anywhere else in the body. Brady's tumor is one big mass from his chest down along his spine. It is officially Stage 3, intermediate risk. Given all of this info, our oncologist feels that there is a possibility that only 2 rounds of chemo may be necessary. This is just a small glimmer of hope, but a little bit of hope is all this mommy needs!!!! They will be able to monitor how the cancer is responding to treatment throughout the process using blood and urine analysis. Once the two rounds are completed he will have another series of scans. Many options exist after that...the cancer could have turned into mature cells (not dangerous), only some could be gone and at that point surgery may be an option, or more chemotherapy. There are a ton of variables, but considering we thought that 5 rounds was the definite plan, we consider this GREAT news. Keep praying...can you feel it working?

The day started off on a bad note. When we got to radiology for our scheduled 9:15 bone scan, the tech (who is as nice as can be) told us she had no record that sedation was supposed to take place. We were flaming mad because we were told not to feed him after midnight because he was going to be sedated. He had already endured 3 days of these scans, being held down and screaming. So, after several heated discussions and phone calls, he got the contrast injection at about 10:30. They told us he wouldn't be sedated. We agreed to that after I bargained with them not to use an IV. We then went to the cafeteria and let him eat like crazy with Pastor and Joyce until 12:15 at which time we had to be back for the scan. The scan was hard for him, but he made it through. When we took off his pjs to do the scan, he had blood all soaked through his onesie down his spine. It seems as though a few of his stitches popped. They aren't concerned right now and are going to keep an eye on it.

We are now settled in our closet, I mean room! Come to find out we will only have a private room this first time. After this we will share a room with another family...ughh The plan for tomorrow is surgery mid-morning to place the Broviac in his chest, and chemo to start tomorrow night. All the what ifs surrounding the terrible side effects is weighing heavily on us right now.

So, we can rejoice in the good news! We ask you to keep the prayers coming!!!

Sunday, February 1, 2009

Just Pray

I would be lying to you all if I wrote tonight and told you all of my postive outlook, my sense of peace about this whole thing...So, I'm keeping it real here. I feel sad, sad from the top of my head to the tips of my toes. I feel scared, scared beyond anything I could have ever imagined. I feel torn, torn between my home, my family and the hosptial and the battle ahead. I always said that when Allie was born, just 3 months ago, that my heart now was made up of 4 pieces. One of the pieces of my heart is sick, and I hate the fact that I can't just pick him up and make it better.

That is the real me right now. That being said, a good friend told me today that despite all the bad that surrounds us right now, God's promises for us don't change! God didn't tell me when I had my precious children, "Here you go, you'll never have any problems from here on out...have a good life!" That isn't one of God's promises to me, or anyone. I think we all just come to expect that because for the most part, life is good. What I do know, and one of the only things that is comforting me right now, is God's promise to never leave me, or forsake me. He is here with me, with Brady...I need to just continually pray, seeking Him, giving it all to Him, asking Him for the courage to get through.

The MOST important thing anyone can do for Brady is PRAY!!! We pray for small things like safe travel, help with each procedure, guidance for the doctors. We pray for HUGE things, like total healing for Brady. Please join us in praying for Brady...