Wacky Wednesday

Brady and I headed to Strong at 8:30 this morning for his 9:30 appointment. When we arrived to the clinic they drew his blood through his Broviac (no tears!) and then we had to wait an hour for it to come back. The clinic is a series of small rooms with glass doors (similar to an ER) staffed by nurses. They also had a playroom where we decided to hang out and wait for results. Brady had fun playing with the train table and tearing through a huge pile of books. Then two volunteers came in wearing "Better Day Buddies" tshirts. They are volunteers who come to the clinic to lead crafts and just try and make the kids smile. How fun! It happened to be "Wacky Wednesday" today. They gave us a Dr. Seuss book with that title and then we made wacky hats. I think I loved it more than Brady! This organization is all volunteer/donation led and I just kept thanking them for being there.

We headed back to our room to start the transfusion at 11am. They just hooked up one of his "tubies" to an IV pole with one bag of red blood cells. The transfusion took 2 1/2 hours. In that time we played, sang songs, watched Elmo, and ate cookies (Brady sternly refused the mac n cheese they offered him....NOOOOO!) At his usual nap time (1pm) Brady curled up on my lap and began biting his blankie as always. Within minutes he was out and stayed asleep for 1 1/2 hours. He couldn't feel my tears hitting his sweet little bald head as he slept. I just kept crying thinking about how proud I was of him. In those quiet moments I often think to myself, "How did we get here?" From our room I could see into two rooms nearby. In one room was a teenage girl with cancer who did not look well. She was so weak that she had to be in a wheelchair and it broke my heart to think of her being sick during such a fun time in her life. In another room there was a young couple who had a baby not more than 5 months old who was getting a transfusion. As I held my precious boy feeling sorry for myself, I thought about how everyone there has a story, a difficult one, but we are all in the same boat. We are all there, praying for miracles...

We were home by 3:30 and the afternoon/evening was very chaotic. Lots of whining and crying among all 4 Williams children. Matt and I are exhausted, as always, and trying to come up with a game plan for tomorrow. Our appointment got moved up to 8:30which means we leave here at 7:30. Although earlier, I'm glad to have it bumped up as Brady can't eat or drink before anesthesia. We won't get results before we leave, but hopefully will hear from the doctor in the evening.

Please join us in praying for:
-Those administering anesthesia...pray that Brady is safe and sound during both scans
-Brady's comfort and sense of security throughout the day.
-Strength for Matt and I as we sit and wait in the same waiting room that we were in when we got the devastating news of Brady's cancer. I'm not looking forward to going back there.

God bless all of you who continue to stand by us and pray for us!!!

Brady the Brave

I've never been so proud of my boy! So today we had the "dreaded bath", Broviac flush, and his GCSF shot. Brady hates his bath because we have to put his Broviac tubes into a sandwich bag, tape it to his chest, then lay him down with his head hanging over the sink to wash his hair. We can't get his Broviac site or his back surgery site wet. Then we sit him in two inches of water and attempt to clean him as best as we can. WELL!!! Today he went through the whole process without a tear. He and I just talked and I was able to talk him down as he became upset. Then I did his Broviac flush before I got him dressed. We talked about each thing I was doing, and he got to choose which tube I flushed first. Now he is getting so keen to things that he watches to make sure the bubbles from the syringe don't go past his caps. Still no crying! Then after dinner Grandma was all set to do his shot. Grandpa was holding him and I was in the other room. All of a sudden I hear "All done!" He never cried! This certainly isn't commonplace, but maybe he is starting to understand that most of his discomfort is short lived.

Brady and I will be at the hospital at 9:30 for his first ever transfusion. We will be there for 3-4 hours. Still racking my brain as to how to occupy him for that long. He isn't a big tv watcher...I guess I will rely on my arsenal of snacks!!! One of our followers asked about donating blood in Brady's honor...LOVE THAT IDEA! I actually have thought about organizing a blood drive in Brady's name sometime in the future. Blood transfusions are a common part of a cancer patient's treatment.

Still no word from Sloan about a potential appointment. I keep calling our oncologist, but she hasn't heard from them.

As far as physical therapy for Brady, we found out some great news today! Our county Early Intervention Program will pay for Brady's physical therapy even if we go to Rochester for it. We are looking into an outpatient clinic that focuses on children, they even have aquatic therapy. It will mean driving there 2-3 times a week, but we are totally willing to do that! Our insurance would have covered 30 visits, but with a $40 copay. To have this expense out of our mind is a huge blessing!

Please pray for our safe travel tomorrow. Please continue to pray for Brady's healing. Other parents of NB children have been on my mind lately too. There are SO many children suffering with this disease, many of whom have Stage IV with a much more bleak prognosis than Brady. Please say a prayer for those who are suffering far more than we are.

Brady needs a Transfusion

Brady had blood drawn today (like every Monday and Thursday). I called for results at about 4:30pm and everything looked okay except for his hematocrit (red blood cells) which is 23. That means he will need a blood transfusion. The NP is going to set it up for Wednesday in the outpatient clinic. It will involve some initial bloodwork, the transfusion, and then some additional test afterwards. I guess the process is 3-4 hours (sounds like fun with an almost-two-year-old!) We will be back in Rochester the next morning (Thursday) for his CT and MRI under general anesthesia. We haven't heard from the oncologist as to whether or not she has heard back from Sloan Kettering. I'm thinking next week might involve us just being home, then possibly NYC the week after? We'll see...

I can't say how difficult it is to live day by day like this. The funny thing is, we all live like this, we just don't know it! I'm a HUGE planner...I have a calendar that sits on the counter at all times, I live by it! Through this experience I have had to adjust to living just one day at a time. I don't know if I'll be home tomorrow, or in the hospital. I don't know if I'll be home next week, or in New York City. It is unnerving I guess...certainly a change of thinking for me. Aren't I glad I have my one constant...my hope and trust in God that is the same no matter what the day holds!

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...