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...

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 momentsphotographybylaura@blogspot.com. 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 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 momentsphotographybylaura.blogspot.com 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...

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!

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 way...one 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!

Okay...off 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 too...so 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...

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:)

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!

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!!!

FINALLY A PHONE CALL!

Just got the call at 8pm from our oncologist...Here is the plan:
1. No results yet from the MIBG scan, hopefully we will have those Monday afternoon.
2. Monday 9:15 Bone scan done under sedation (thank goodness)
3. We will be admitted to the hospital after the scan.
4. Tuesday morning he will have surgery to have the Broviac placed in his chest and an echocardiogram (all done under anesthesia).
5. Sometime Monday/Tues we will be meeting with the oncology team to finalize the treatment plan.
6. Chemo will probably be starting Tuesday night. We will be in the hospital through the weekend.

So it begins. I can't believe this is really going to happen. Please pray for courage, comfort for Brady, and a sense of security for our whole family.

Plan for Friday

Today we traveled to Strong (on clear roads this time thank God!) at 10:30. We decided to get there early so that we could have lunch with Brady in the cafeteria. He seemed to love his french fries with ketchup...could there be a cuter boy? Our first stop was to meet with the nurse practitioner from neurology. We had expected to have his stitches removed...guess what? They are dissolvable!!!! Praise God he didn't have to sit and have them all removed!!! He was still miserable while she checked out his surgery site, but we dodged a bullet there. We then headed down for day 2 of his MIBG scan. He didn't need to be injected again today, the solution is still in his body from yesterday. Even though there was no pain involved, for Brady this was one of the most difficult things so far. He has to be strapped to a board using this vest type thing that confines his legs and body. They scan his body in segments for about 5 minutes at a time in a machine similar to an MRI tube. The total scan time is was about 20-25 minutes, but it felt like an eternity. At times we had to hold his head still or his arms down. He just screamed the whole time and cried out for me. We also found out that we do have to go back tomorrow for a 3rd scan..ugghh...Matt is going to go to work tomorrow. My friend Lynn will be coming with me and mom will be home with the kids.

We just received a call back from our oncologist. The plan has changed a little bit for Monday. We will go on Monday and Brady will have surgery to place his Broviac catheter, have a bone scan, and have an echocardiogram. After his surgery we will be admitted, but chemo will not start until Tuesday afternoon. From there it will be 3-5 days in the hospital as chemo is administered.

Many people are asking us how the rest of the family is holding up. There is no doubt that they are being well-cared for! Our parents are amazing and love and care for Eli, Cara, and Allie just as we would... Eli spends his days "beezzering" as we call it. He is a happy wanderer who loves to just go from place to place, never spending a whole lot of time doing one thing. He is a sweet sensitive boy who I know misses his care-free days playing with Brady. Cara spends her days caring for her baby-doll. Despite her loud, assertive personality, Cara has a strong nurturing spirit, and she really senses that I have been upset lately. Allie is God's daily reminder to us that His love is always with us. She is a perfect baby in every way...Matt and I just love each of them so very much.

histology report

We just spoke to the oncologist again. He said the histology report is "favorable" for intermediate neuroblastoma. Based on what we already knew about the tumor size and growth, this was the best news we could have received. It is still very serious, but the oncologists are optimistic that it is curable most of the time. We are still waiting for biology and further bone marrow testing to determine exact staging and course of treatment. The plan for now is to discharge Brady tomorrow so he can go home and heal from his spine surgery and begin chemotherapy at the end of next week. We are so looking forward to time together as a family before we begin the battle of a lifetime. Brady will also have some kind of nuclear test done next week when he comes in for his first round of chemo. Keep the prayers coming, especially in the hard days and weeks to come.
Matt