Two Years Ago and Today

Two years ago I was feeling like this as we were preparing for this life-changing day. Can you believe it has been two years? Honestly it does kind of seem like forever ago. Maybe you were one who prayed for us that day. If I haven't done so in the last two years, may I please take this opportunity to thank you. Thank you for interceeding on Brady's behalf. Certainly the outcome of that day is proof-positive that God does answer prayer! There was no way for me to know two years ago where we would find ourselves today. Little did I know (but I DID hope) that I would be spending the day with Brady, but a healthy and whole Brady! This little guy has quite the busy calendar this next month or so. After his appointment with Dr. Sanders a few weeks ago, next up on the line up was a PT appointment and his 4 year old well-child visit which we also counted as his pre-anesthesia physical. I went in with a list of 6 issues to discuss with the doctor (just trying to get my money's worth!). Brady continues to have fluid in his ears. I have been trying Nasonex every morning with him, which basically turns into a daily headlock. He absolutely hates it and there is no other way to get him to do it than to just hold him and get it done. Of course in true Brady-style, he is fine within 2 seconds after it is done. Despite trying this though, the fluid is still there. The doctor explained that after 3 months, Brady could be a candidate for tubes in his ears. So, it looks like we will add another specialist, this time an ENT, to Brady's impressive list. I knew it was time to ask for help with the anesthesia issue that comes up with each scan. The thought of going in there on April 19th and worry that once again we will have to try and fight to get our voices heard by anesthesiologists makes me sick. We are just unwilling to take this risk again, we have had far too many bad expereinces. Anesthesia is safe, but when complications arise, it just introduces the risk for potentially dangerous situations. So what to do... I explained my concerns and asked if there is some way for she and I to come up with a written document explaining past experiences and the bad reactions he has had. It seems ridduculous to even have to think about doing such a thing, as one woudl assume this is the information that is in his chart...the information that one woudl assume is read by the anesthesia team each time. But please trust me, this does not happen. I have seen one doctor go back and casually flip through his chart. It is shocking and to me, unacceptable. Her recommendation is that we contact the anesthesia department and set up a consultation in the next week or so. She suggests that we find one doctor we trust and have him go through his chart, document the bad reactions his has had, and write a reccomendation based on his professional opinion. I like this idea since it will be coming from an anesthesiologist, rather than just myself or the pediatrician. Now I just have to find out if such an appointment is even possible. She also commented that it woudl be wise to have such a plan in writing in case we need to document any malpractice. Yuck. I will have some phone calls to make in coming days to set up two more appointments for Brady boy! In happier news, we got to have lunch together, snuggled up close in a booth at a great diner. Of course, pancakes and bacon were on Brady's plate. He was quite disappointed that the syrup selection was limited to...maple!

I'm a Workin Mamma!

I'm feeling like a working mommy these past few days! I have been out of my house more yesterday and today than I have in a LONG time! I miss my kiddos and dare I say my "routine?"

Yard sale day 1 was AMAZING! My friend and I have done SO much work for this sale, we had truckloads of things, and we did GREAT! We feel so blessed to be able to make money for our families with just a little elbow grease and time! I'm using our proceeds to throw an awesome party on August 15th...by the way, it's not to late to RSVP to mwilliams91@rochester.rr.com :)

Tomorrow is our 2nd and last day of the sale. I went around and collected 3 more big bins of things to sell. Woo-hoo! Decluttering is a great feeling!

Brady boy is doing very well. He had a fun day with Grandma Sandy (thank you Sandy!!!) and the few times I saw him he looked tired, a little puffy, but happy! We didn't hear anything from Strong today, I'm still quite sure we will be waiting until our appt next Thursday.

Thank you all for your prayers for us this week. I'm so glad that God doesn't grow tired of hearing prayers for Brady! 4 hours of anesthesia is quite a big deal for my little man, and no matter how often he will have to endure it in the next years, it is still a big deal for us. Thank you for staying on our prayer team!!

I'm off to bed with sore feet, a happy heart, and Sharpie marker all over me!

Scan Day

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

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

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

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

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

Home

Hooooray! We are home! Labs came back negative for infection so we were discharged at 6:30pm. I guess the fever must have been some sort of reaction to anesthesia. I'm going to get a list of the meds that were given and try to figure out what was different this time. Brady's blood counts are coming back up, not normal yet, but no longer neutropenic. The results of HVA VMA were not in yet, so we will probably have to wait until Monday (remember those levels will tell us if the amount of cancer cells are decreasing). We have an appointment Monday with the oncologist that was supposed to be to go over results of the scans. Since we already did that in the hospital, I'm going to call Monday morning to see if we still need to come in. Our next goal is to get this tumor out, which means we need to get Sloan to return our calls and emails. That is an area for prayer!

I wanted to share a picture with you of our three monkeys (the 4th monkey was sleeping soundly in her swing). It warmed mommy's heart to see her four "babies" back where they all belong! Also I included a picture of Brady saying his prayers:)

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!!!