Jones Family

Jones Family
November 2009

Sunday, December 27, 2009

Merry Christmas!

We've been so happy to be home. The time has flown and I've had SO much last-minute things to do since last Friday, an update has been lower on my priority list. I hadn't checked email or anything in a looooong time. But I wanted to wish everyone a very Merry Christmas and hope that love and peace fill your hearts and homes this season.

Brayden has had a BIG time since being home and prepping for Christmas. I've jotted down some notes to share later. Highlights have definitely included his friends from school swinging by on Christmas Eve afternoon to sing Christmas carols from the driveway. So sweet! The nurses at the local clinic went ABOVE and beyond to celebrate Brayden's move from the High-Risk aggressive chemo to his Maintenance regimen for 2 1/2 yrs. He had an awesome Cowboys' blanket made for him by his sweet nurse that takes such good care of him. He LOVES it! She also put together a HUGE surprise for him to get an autographed photo to him from Felix Jones! He's liked Felix since his days at AR playing for the Razorbacks! He was so overwhelmed. Waking up Christmas morning at home was SUCH a blessing for us all to be together. AND, we had a WHITE CHRISTMAS which for us is incredibly rare!! But such a neat way to wake up!

We were stunned to get his counts last Wednesday and after strict isolation for so long, he was no longer Neutropenic! His counts were at 799! He was so happy. The bummer is it looks like we'll be going to Little Rock tomorrow. Please pray for safe travels, his protection from chemo and its nasty effects. He'll be having a spinal sedation and intrathecal chemo as well as IV chemo, and will now begin a marathon of pills at home. We're praying he responds well and now that we're moving into this phase of chemo, the Leukemia cells to stay gone and Brayden to be forever healed. He's still recovering from Radiation with more pain and some side effects, but we're so thankful he didn't have the nausea like we had been warned was possible.

I'll try to post more in the coming days. Happy New Year!!

Monday, December 21, 2009

So good to be home

Friday was such a rush of activity. We had done a lot of packing and prep work Thursday night. We were crossing our fingers for good blood results and hopes that Brayden could do more. Friday morning he was so excited to be going to his last Radiation appt. We got there pretty early and got some pictures with the wonderful staff. They gave him his countdown calendar and he thought it was so cool he got to take his mask/helmet with him. He got a hat and a diploma to show his ‘graduation’ from Radiation. It was great getting to say goodbye to everyone and Merry Christmas wishes. We headed to Children’s. We needed to get another check of Brayden’s counts since his ANC was in the low 200’s the prior Monday. After his port access and blood draw was complete, we took a walk to the floor to check on some friends while waiting for the results to come back. It was a welcome relief to hear that they both had gotten to go home recently. After visiting with all the nurses, Brayden let out a cheer when he heard his ANC’s…although Mom wasn’t cheering. If Brayden’s counts had been high enough, he’d have to come back for chemo today in Little Rock and start the Maintenance phase of his treatments. He was just pumped to hear he wouldn’t have to come back this week! Me, on the other hand, not so much. Hearing he was Neutropenic and his counts had dropped to the low 100’s has me again on high alert. We’re hoping and praying his counts are high enough next week to see all of our family for the first time since early October. The yucky Ara-C is doing its job in the long-lasting effects we were warned about. This is week 5 since and he’s still Neutropenic. Nevertheless, at least his red blood cells and platelets didn’t require transfusions, so on the bright side, we were heading home!

We quickly loaded up the last of our things and headed out of town! Thankfully, we didn’t have to stop. I warned Brayden ahead of time with his counts that dangerously low, we needed to try to get straight home. We couldn’t have been happier to be back. Seeing Dad & Hershey a few hours later was so wonderful! Brayden had so much fun showing him all the Radiation stuff. This weekend has flown by with all the Christmas prep to complete and me getting out VERY late Friday to re-stock groceries and get ready for the 10 days to come. We had a few scares with Brayden having a sore throat, but so thankful nothing developed. I was physically ill with worry and I don’t know how I will ever learn to let go of that concern or if as a Mom, that’s even possible. I was so happy to see his bright shining eyes the next morning after he finally ate a better breakfast. Brayden and I were busy on Saturday wrapping presents. He did SUCH a good job on Dad’s presents! We were definitely enjoying the Christmas activities at home – baking, looking through Christmas cards, reading through school stuff and cards & gifts from his friends! Thank you!!!

We go back to check his counts Wednesday locally and I’m just praying they’re above Neutropenic level so we can breathe a small sigh of relief for now. Regardless, I think we’ve learned to still have fun and enjoy all the moments we have together. I’ll try to post some pics soon. Brayden definitely can’t hide what he’s going through anymore and I noticed how different he looks even after Radiation. We’re so thankful for how strong he was and how well he did in enduring those 8 treatments. Even though he’s Neutropenic and has been so tired, weak, & in some pain, we’re thankful he’s fighting and not having to spend this time in Little Rock or in the hospital from a fever with being Neutropenic. We’re so thankful we’re together at home and pray for him to regain his strength, for all the Leukemia cells to be killed in his brain after the Radiation and especially in his body after the long 8 months he’s endured of High-Risk aggressive chemotherapy. We pray that everyone remember the true reason for this special season and be filled with peace and love for one another. Merry Christmas!

Wednesday, December 16, 2009

Radiation Days 5 & 6...100's of Thank You's!

WOW! I just noticed this is my one-hundredth entry. Unreal, since 8 months ago I never could have imagined we would be sharing so many things with all of you here about Brayden's unexpected journey. I hope we've said thank you enough for sharing with us in this journey with prayers and encouragement.

We wanted to send a BIG thank you out to everyone who donated blood today! 64 units were able to be banked to help so many others who need it. I hear the Red Cross staff traveled EARLY from Springfield today and were so happy to be working on behalf of Brayden's drive. We're thankful for them being here and making that drive. Thank you to Paula of the Bentonville Plaza for use of the great location! Thank you to Korey from the Red Cross for organizing the event and allowing us a way in which to give back. Thanks to my mom, aka Brayden's Nini Annette for representing us today when we couldn't be there. We hope everyone liked seeing Brayden's beads on his buddy, Champ and a visual representation of all that he's been through so far. More than once today Brayden said he wished he could be there...we both do, to thank each of you in person. We hope each of you liked the Team Brayden bracelets as a small token of our appreciation for your time and special gift today. We also couldn't have made this happen without Nini Annette pulling together volunteers to give of your time off to come and help make this happen. Thank you to Hannah, Amber, Phil, Denise & Tiffany.

Thank you for the encouraging calls, emails, and pictures that have come our way from today's Blood Drive. It was the next best thing since we weren't able to be there in person. I didn't want to post certain pictures without permission, but Brayden and I have really enjoyed getting to look at them and hope you enjoy this one. Brayden was thinking how neat it was to see a couple giving platelets! It truly is amazing how differently we look at things like this now.

Yesterday was a rough day. I just couldn't muster up the courage to post. Brayden had wanted to go for a short walk after we got back from Radiation. I reluctantly agreed and hoped the fresh air would do him some good but the cold air wouldn't hurt him. The old Brayden couldn't just walk...he wanted to run. After running some sprints with me begging him to take it easy, I finally coaxed him into going back to our hotel room. Within minutes, he told me he didn't feel well. He crashed. He had just worn himself out and didn't want to eat. I blamed myself and hate not knowing what to do and how to balance letting him be a boy and yet trying to protect him. I was run-down myself and this time being here in isolation is beginning to be longer than what we thought. All of it was beginning to be too much and take its toll on both of us. Thankfully, after a long rest, Brayden finally ate a bit and was more like himself. That helped a little...until he wanted to watch a St. Judes special on tv. It was good for him to identify with other kids. But their stories hit too close to home. Again, I found myself in denial suddenly realizing the kids we were watching with the same diagnosis were just like Brayden. How did that become our life, and something I'd never wish for my sweet boy and want to protect him from? It was a very hard night. Today's fresh day and perspective was a blessing. So was how much better he did. He wasn't as tired and didn't get the yucky taste. His stickers are filling up on his calendar. Just 2 days left! He had more x-rays today to be sure everything is still on track. Thank goodness there were no issues. We were shocked to see how much weight he's lost in the week since he started Radiation. It's a good thing he had the steroids before the last month to have some extra to give!

When we came back to the hotel, he had a good lunch and was able to get some schoolwork done. Since he's been in rare form with some lovely comments. "You used to write in cursive when you were in school, mom? They had cursive back then? Was that before the Titanic? What about the Civil War?" I guess I'll be making him a timeline of my life and these important historical events during Christmas break to give him a better visual that his mom is NOT that old! He decided to - on the fly - plan his 10th birthday coming in March. He has said he wants to go back to the Sam Walton museum. Nice. I think we can make that happen...of all the things he would want to do! Tonight it's been fun hearing all the good stories and positive comments from today's Blood Drive. It's pepped us both up and it's been a great gift that each of you have given!!

Tomorrow we hope time starts to go by quicker as we pack and get ready to leave Friday. He'll have his final doses of Radiation tomorrow & Friday. We'll also get an update on his counts to determine if they're high enough to start the Maintenance phase of his chemo the following Monday. We're not sure to hope that his counts are low enough to have a break or high enough so he can continue. Of course we pray they aren't Neutropenic levels though. We're still praying for his protection from the ugly effects of Radiation and his immune system can keep fighting and not have any germs that he can't fight off that effect his system. Until we're home, just a few days to go and we can't wait to stop and breathe and focus on the beauty of the Christmas season without Dr.'s appts or chemo for a little bit!

Monday, December 14, 2009

Radiation Day 4

Brayden announced this morning he's halfway through Radiation! Thank's been a bit of a rougher day. We started out early at ACH to get an update on Brayden's blood work and check his counts. We had been crossing our fingers they were high enough so he could get out and get a change of scenery. Remember he's been in isolation since October. Poor guy...He had a great time seeing his Nurse buddies again. We were SOOOOO happy to see his Oncologist's Head Nurse back! Whew, did we miss her! Brayden was pumped that he only had to get blood work and the port access didn't have to stay in there long. After being accessed quite a bit the last several weeks, he told me this weekend his port was feeling good after almost a week-long break. He had a check-up from another Oncologist and we talked about the impact of Radiation. After waiting a bit, we saw his results. The good news is his hemoglobin and platelets are high enough to not have to worry about transfusions right now. The negative is that he's certainly Neutropenic...not what we had hoped. But that's okay. We're all set up at the hotel and at least we were prepared with Dad being back home.

We headed over to Radiation for Day 4 and he again did great. Thankfully no sick taste this time. I guess the Zofran has helped. But it wasn't long before he was getting nauseated once we got back. Thankfully he had a good breakfast and lunch before he crashed. He took a looong nap. The thing that we saw the most last week is how tired the Radiation makes him. I was glad he was at least able to nap since last week he wouldn't or couldn't. He was peppier after he woke up and I was so thrilled. He had been hurting and not feeling well when he went to take the nap so seeing him more himself just did my heart good.

We're praying Brayden's body stays strong and free from infection. With him not having much infection fighting ability, it makes me extra nervous and makes fever so much more likely. He's done great so far and we pray it continues. We pray his counts recover, he stays strong and these last 4 days of Radiation go by quickly!

Sunday, December 13, 2009

Running On!

One of Brayden's friends' Mom sent me an incredible email. Her phone call left me stunned at this idea. SO neat! Her brother-in-law, Brad Quinn (link to his bio), is running a marathon. Not just ANY marathon...a 100k! Hello!!!! And, not just anywhere. They are running for shoes and medicine for under-privileged children in 3rd world countries. This link gives more details about this race and here are some comments from their website:

Ultramaratón Fuego y Agua is an extremely challenging foot race on Isla Ometepe in Nicaragua. The race is composed of four different event options, the 25k, 50k, 100k and a 2/3-person 4-stage 100k relay. The 100k and Relay course is a single loop encompassing most of the island and involves the ascent and descent of both volcanoes. The 25k and 50k courses cover part of the 100k course.

Because of the volcanoes, the island holds several micro-climates of jungle, dry tropics, tropical beach, and cloud forest. The race course winds through singletrack, dirt road and sand as it passes towns, villages, coffee, cacao and banana plantations, cloud forest, volcanic trail and white sand beaches.

Brad does this frequently for other causes like the American Cancer Society. Well, Miss Susan (her daughter is in Brayden's class and such a sweetie) put together a flag with their class motto and had everyone sign it. How cool that Brad heard about Brayden's story and wanted to do something! So he carried this flag for Brayden and planted it on the side of a volcano! SO COOL! Thank you to Susan and ACA's awesome 4th grade class for such an incredible showing of support for Brayden. You all are each amazing! Thank you so Susan for pulling this together and giving me goosebumps when telling me about Brad's run. And Brad, just another dad from Texas, run on! You are an inspiration!

It's a Wonderful Life!

Radiation Days 2 & 3 went well for Brayden. We played Hangman in the waiting room since they were running 30 minutes behind schedule. I finally remembered to bring my camera and got some good shots...but I can't hook up my camera until I get back home to share them with you :-( Did I mention on here how they made him an adorable calendar? It has his name across the top and the month of December on it. It's filled with Christmas stickers and colors. For each day he's done with treatment, he gets a sticker to help count-down his days. SO NICE!! He said he got the yucky taste again but not for as long. He's been SO tired...wanting to go to bed at 7:30 tired. His appetite has diminished but he's still getting some healthy things. Other than that, no sickness!

Friday afternoon we were counting down - literally! - the hours until Dad got here. It perked both of us up again getting to see him. I didn't realize how we might have been dragging a bit until he got here and we were both pumped up! I haven't seen Brayden that clingy with his Dad in forever! It was great to see them playing, wrestling, but mostly hugging on each other.

Yesterday I got to sneak out and re-stock groceries before Bryan leaves. While out, I surprised Brayden and got a mini Christmas tree on clearance! We're talking the 1 1/2 ft kind. It's so cute! So I found a couple of clearance ornaments to throw on there to help spruce up our hotel room. He was so excited to see them! We had a lot of fun decorating it. Sure, there weren't that many branches to decorate. But it was still fun! I was proud of myself for being creative and using our little ice chest with a hand towel over the top as a tree stand and skirt to put the mini tree on!! Simplicity definitely helps you appreciate the little things.

Last night we had a fun time. After the tree was decorated and we had dinner, we played some games and got to watch "It's a Wonderful Life!" Bryan and I were both saying we've never seen it all the way through from beginning to end. It seems like I always catch the last 30 minutes. We were both saying "Oh!" Now it makes sense! What a neat story. Brayden enjoyed watching it too while we colored and played. It was such a nice family time. Now today we're trying NOT to count down the hours until Dad goes back home. It's going to be a long 5 days before we get to go back. Brayden's missing Hershey and we're just ready to be home.

Monday we'll get an update on Brayden's counts and possibly Friday as well. If his counts are high enough, he'll return on Monday the 21st to begin Maintenance.'s amazing to think how far he's come. The 21st will mark 8 months since that dreadful night in the ER and life flight to Children's. So in other ways it's been so long already. But we keep focused on how he's finally past all the high-risk aggressive chemo regimen! Even though he has 2 1/2 yrs left, it's not like what he's been through! We're praying his counts rebound, he stays strong through Radiation with no sickness and secondary effects. We pray for protection for him from all the other effects of Radiation. We pray safe travels for Dad and protection for us this week. We continue to pray for Hannah's sweet family in the coming days and weeks. Our hearts break with them...

Wednesday, December 9, 2009

Don't forget to Donate Blood!

The blood drive in Brayden's name is just 1 week away! If you haven't signed up yet, there are more slots opening up! You can sign up for an appointment to fit into your schedule. Drop-ins are still welcome! Please help us spread the word. We were so excited to make our goal, but there's still room for more donors. After Brayden's blood transfusion this past weekend, we were again thankful for donors in our area that helped keep his body fighting. Seeing my sweet boy so pale and his lips so gray, heart rate working over time to keep his blood pumping while his levels are so low is just such a scary experience. Watching those 2 units of blood have such a profound effect on him and turn those cheeks & lips back to pink, watching his stats come back into normal range and seeing his energy levels increase is an answer to prayer and thankfulness for a donor who helped make that possible. Each of you can help give that gift of life to others this Christmas!

Brayden and I are sad we are in Little Rock and will miss the Blood Drive. We'll have generous family and friends there donating their time as well to help make this possible. Brayden has a special thank you to each of you after you give that gift! I kept reminding him of that while he was getting his transfusion. Your gift does not go unnoticed or unappreciated. Thank you to all of those who are stepping up to be first-time donors! If you aren't local or able to attend this blood drive, please give blood in your local area and you can mention Brayden's Blood Drive (if you want) so the donation will be given in his name.

We aren't doing this for any other reason than to use Brayden's Journey to help others and allow each of you to realize what a difference you can make by donating. It's our way to try and give back and ensure when other children need blood, there isn't a question of whether or not it's available. Thank you so much for your help in making this possible!!! - code 72712. Location: Bentonville Plaza Suite 120, December 16th. Once you logon, there are directions for the Bentonville Plaza and appointment times to choose from 9-3. PLEASE SIGN UP TODAY!

Radiation Day 1

Whew...driving to Little Rock Tuesday was more of an adventure than I could have imagined. We were so thankful for safe travels after seeing so many cars off on the side of the road from, we assume, hydroplaning. There were too many wrecks and even a truck on fire. The rain was SO heavy we had to go slow and play it really safe. The long drive seemed so much longer. Brayden was not his normal self and slept the whole way. That hasn't happened in a while.

Brayden was SO nervous when we got to Carti. I hope the cute nurses helped. They were so nice. They were giggling at his chatty nature...and were quick to tell me the grown men do it too, but it's not quite as cute! He was positioned on a lovely, plush, comfortable...okay, a rock-hard, solid table. The big machines were a little bit intimidating. The making of his mask was unique. It looked like a flat strainer with screws on the outside edges. The flat strainer part was like a pliable plastic. They put it in hot water and then after positioning over Brayden's face, it was really tight and began to take the shape of his face. You have to position it just right while screwing it into the table and allow it to dry while it conforms to the shape of his face. He was excited to know he gets to keep the mask after he's done. Who Friday he may never want to see it again! Anyway, they told him how the mask feels like wet noodles until it dries. Then the lasers are lined up just right and the mask is marked. We were glad to hear that since the material we read originally indicated he would have tattoo marks in order to properly position the machines. This is MUCH easier! After the CT-scans, Brayden had many more questions. It was painful to him to have to lay still and not speak! He made up for it after the mask was unscrewed from the table and he was free again. After seeing his mask off his face, he had to comment about "My head is HUGE!" He wanted to go back and see the computer images of his CT-scan. They were so patient with him showing him where his brain was, his ears, his eyes. We even got to see his port on the image!

We had to brave the rain again to make it to our hotel and get checked in. We were really missing Daddy after carrying in 11 days worth of medicine, clothes, all his books and schoolwork, and the list goes on. After an hour of cleaning, the un-packing had to start and we finally got settled in...just in time for dinner. Last night was definitely a blur. Our hearts were broken to read about Hannah Grace and her homecoming into Heaven...our prayers for them have continued today.

This morning came way too early. Brayden wouldn't eat breakfast. I know he was really nervous. The cold this morning was brutal! My poor car was NOT happy not being in the garage like at home! Radiation today got off to a good start. Everyone was so nice and friendly with Brayden. I forgot my camera but will try to remember tomorrow. He had to get back on the comfy table and re-position, then screw in the mask again. It's a little nerve-bending hearing them talk about the critical placement of the mask. This room had cameras on him and the Radiation machine was behind him and over him. They use a band to velcro his legs together to help him stay still. It took a little longer than it should going forward because they had to get more x-rays. Walking out of that room knowing what the machine would be doing to both sides of his head and brain was some hard steps. My legs felt like 100lb weights had been bolted on my ankles. Watching him on the monitor with the technicians and all the computers was at least a little more comforting. The huge machine rotates from side to side and just was massive. The red lasers were positioned and re-positioned to ensure it was on just the right spots. was over. I ran in to see him and he couldn't WAIT to be free again of the mask. He said the sound it made was scary and it made a bad taste in his mouth and almost made him get sick. Yikes. I'll definitely be giving him a Zofran before we leave tomorrow.

We had to see the Dr. before leaving and Brayden was happy to get to head back out into the cold. He had to wear a super-warm hat to keep him warm. His head just looks so vulnerable in this cold! This afternoon we both worked, but were working against our heavy eyes. He didn't give in...he hasn't eaten much today. I keep watching for things, but we've been told twice symptoms don't usually show up in the first day anyway. Tomorrow's appt will be a little later, so I'm hoping he'll get some extra sleep and hopefully eat at least some fruit & yogurt. He's loving those low-sodium V8 snack drinks lately. We loaded up on Acai berry juice and some blueberries and almonds. Hopefully he's getting enough good nutrition to help fuel his body to keep up the fight.

He should have to get blood work at Children's this week...we're just waiting to hear when so his Oncologist can also check in on his progress. I reminded him again today why he has radiation and it made me wonder if I had said it clearly enough on here. His type of Leukemia is highly treatable with a 76% success rate. In children where there are Leukemia blasts present in their spinal fluid at the time of diagnosis is treated with additional procedures. There are 3 levels of measurement of the blasts: 1-3, 3 being the most severe. Brayden's were at Level 2 when he was diagnosed. All of the spinal taps he has had, (lumbar punctures) have been injecting chemo in his spinal fluid to treat the cells that were present in his brain. The blood in the brain is separate and treated separately from that in his body. So the other chemo treats his body and the LP's and Radiation is to treat the cells in his brain. Years ago when the success rate wasn't so high, research had shown that children would look like they were in remission then the Leukemia blasts that had been hiding in the brain would overtake and the children wouldn't make it. So with all the side effects of Radiation, it's proven effective to ensure after Remission, those children don't relapse with those blasts that hide in the deep recesses of the brain while the body is under-going chemo. We just want to ensure it doesn't come back.

Tonight he's having some leg pain that could either be attributed to the chemo shots in his leg last week or his peripheral neuropathy. I'm hoping it's not from Radiation this quickly. He isn't liking any food this evening so I'm hoping his taste buds aren't effected already either. Please join us in praying for a restful night of sleep, peace for him for his Day 2 of Radiation tomorrow, and again protection for him from the nasty effects that Radiation can bring. Stay warm tonight!!

Monday, December 7, 2009

Checking it twice

So much has happened so fast. Here's a quick update - okay, as quick & brief as I'm able to do while being my detailed self:
Friday when we went to get Brayden's blood work and counts checked, we found out his ANC's were at zero. He was severely Neutropenic, no immune fighting ability at all. It's so scary when this happens. A fever is usually so common, followed by a rush of antibiotics and 3 days in the hospital. But we didn't have much time to let that sink in. His platelets had bottomed out to 40 (at 20 they usually transfuse) and his hemoglobin was at 7.4. If it's below 8, usually a transfusion is done. In the past, Brayden hasn't needed blood or shown as many symptoms and I immediately became concerned. How would I know if something went wrong? We waited in the secure isolation room at the Clinic for what to do next. The nurse could see the panic in my eyes. 4 hours later, we had orders from AR Children's Hospital to admit him to our local hospital and have 2 units of blood transfused. Ugh...being at the hospital with Bray being Neutropenic is the last thing I'd want to do for fear of him getting something else while there and his system was so susceptible. Brayden was NOT happy. Even though we talked about this possibility, he wasn't thrilled at all when he thought he was done with overnight hospital stays.

We drove straight to the hospital to get things going until Dad could join us after work and bring some things from home for our night stay. I was a wreck and insisted he wear 2 masks. Thankfully we got him to a room pretty quick. The nurses probably thought I was crazy. I grabbed the first container of industrial strength alcohol wipes in the hallway and got busy. These things you can't even touch with your bare hands! The bed rails, the light switches, the door knobs, you name got wiped down. I had Brayden laying in his bed like a mummy with his DS not moving until I tried to feel a little better about this foreign room and hospital. I tried to swallow down the panic when the tech walked in the room without gloves or mask to take Brayden's vitals. But I did what we were taught in the early days after diagnosis at ACH and asked politely. And so we waited. 4 hours later, Brayden and I had visited with dad, got a little more settled in, knocked out some schoolwork, and finally his first unit of blood showed up. There were some concerns at first when orders were first written because of some extra steps that have to be done before he can receive a transfusion. Needless to say, we were praying extra prayers to prevent so many of the side effects that can develop and I was SO happy to see the bag finish 4 hours later and his stats still looking good while they prepped the second bag. About 6 the next morning, his nurse was removing the second empty bag and told me we were free to go, or were welcome to stay. We were breathing a huge sigh of relief! Brayden was stirring and I told him the news. Sleep? Uh - NO! He was up and getting his shoes!

After the cold drive home, I couldn't stop smiling. Brayden was definitely juiced up. He didn't stop talking once all the way home! Within a few more hours, his pale skin and gray lips were bright & rosy again! It's amazing how much more energy he had and again reminds me if he remembers what it was like to really feel good. We were trying to recover while still catching up on sleep and the crazy week prior. The night away made me realize we were so tight on time before Christmas and we needed to get some things done! After re-cleaning our house again since Brayden was Neutropenic, we enjoyed some time at home before today's visit back to the local clinic.

I had warned Brayden if his platelets were low, we might have to repeat Friday's trip for a different infusion. Meanwhile, this morning we heard some incredible news. His Oncologist really wanted Brayden to get finished with Radiation before Christmas. Thanks to some prodding from his awesome Nurse, the dates were pushed back. Only we thought we had one more weekend. NOPE! We leave in a few hours for Little Rock! AAAHHH!!! However, if Brayden was still Neutropenic and needed platelets, things might again change. I don't know if anyone knows how it's minute by minute sometimes. Again, I have to relinquish control and have that uncomfortable feeling of not being able to plan everything out. After calls with ACH, Carti for Radiation, my work, Bryan, my mom (since sometimes she's the last to know!), Brayden's teacher...we left for Clinic. After Brayden's normal sarcastic humor with the nurses, he received his last round of aggressive chemo before he starts Maintenance chemo for 2 1/2 yrs! YEAH!! While we were celebrating, the nurse at the local clinic comes in and asks if it's really Brayden in that bed or his twin. I saw the yellow paper in her hand and knew she was holding Brayden's lab results from his blood work. WHOA! His platelets JUMPED to over 300! He had ANC's! Not a ton but enough to keep going and help him not be Neutropenic! And, of course, after 2 units of blood, his hemoglobin was looking good! Everyone was so stunned, they did another blood draw and checked his labs twice...just to be sure! It was confirmed...they were accurate. I started making phone calls to confirm with everyone again, we would in fact be leaving for Radiation.

Brayden was student of the week this week and I was so sad to realize he wouldn't get to finish. We won't be home again until the night of the 18th. Dad will stay back and work and I'm so thankful for Marriott reward points donated from gracious co-workers at my awesome company so we have a place to stay. So we'll get this knocked out and be home to enjoy a week before Christmas.

PS - someone stopped by tonight who was also checking things twice! I wish I had gotten a picture of Brayden's reaction when Dad opened the front door to show who was standing there! It was very last-minute...Dad arranging with a sweet friend now that his counts had rebounded knowing he can't get out. He brought such a nice gift by and was telling Brayden how brave and strong he has been and to keep on fighting! Brayden didn't stop smiling for a while.

These are the things we are certainly praying for...after hearing from Brayden's Oncologist some children can get 'violently ill' and have other reactions to Radiation, we're praying Brayden has minimal impact from this final aggressive round to eliminate all the Leukemia cells found in his brain at the time of his diagnosis. There are too many side effects of Radiation to list here. We certainly pray Brayden be protected from the cognitive impact, from the risk of secondary cancers. We pray the CT-scan and head piece fitting go well. We pray Brayden be emotionally at peace with this uncertain and scary treatment. For protection for us traveling, Dad here at home, and us in Little Rock alone.

Until next time...Brayden says he'll soon be tan like mom after his radiation is done!

Saturday, December 5, 2009

Please Pray for Hannah Grace

We've had a roller coaster 18 hours with Brayden and are home from the hospital. But as thankful as I am he's home, my heart is heavy. We heard about sweet Hannah Grace from a dear friend of ours while Brayden was in-patient at ACH getting chemo in early October. Since then, we've asked for prayer before for her, our family has tried to do small things to reach out to her and her family. But tonight our hearts are so heavy. I've been behind on updates on how she's doing. Please see this link from a friend of hers who did a summary on what is happening and why tomorrow is so critical that this family be lifted up in prayer. You can follow Hannah's updates on Caring Bridge to the right of Brayden's blog - her name has a link for it.

There has barely been a day that goes by Brayden doesn't ask about his friends (both those he's met and those he only reads about) who are also fighting. He asks about Hannah nearly every day. "Hey, mom. How's Hannah doing? Have you heard any updates?" The last few weeks it's literally hurt my heart to hear him ask. I want to protect him from as much as I can as a mom. I know, however, I want to be honest with him. I've tried to gingerly give him more information in preparing his heart for what is coming. Even though we are not giving up and are praying for a miracle, his friend who also has Leukemia who he's only seen pictures of, that also lives in this area, and also goes to ACH, is fighting so hard and is up against so many obstacles.

Our hearts will be with Hannah Grace's family tomorrow as a fellow mom, dad, and sweet child fighting. We pray for their peace, God's Hand to be upon their family and carry them, and for so much more my heart can only speak to Him. Please join with us in prayer for them and we pray their family be surrounded with love from so many in God's family.

Thursday, December 3, 2009

Is it really December?

I can't believe it's been a week since Thanksgiving. I just didn't have the heart to update since we were at Children's Thanksgiving Day or since. Brayden's Oncologist was wonderful to come by and talk to us, spending so much of his holiday time doing all he could to make Brayden laugh with his stories of his cats, football (even though he doesn't like football but knows Brayden does) and the list goes on. Meanwhile, we were reinforced of how bad this past round should have been for Brayden. He was so surprised Brayden hadn't been sick since these chemo meds had been in his body before and wreaked so much havoc, this round should have been all the more intense. Sometimes I wonder if the chemo is really working when he doesn't have the intense responses that are expected, like with his hair taking so long to fall out and his minimal sickness with this round and so on. On the one hand I am so grateful he hasn't had to endure more than he already has, but it's honestly left some looming questions hanging over me. We were SO thankful to hear his eyes made it past the impact from this round. He could have had bleeding conjuntivitis from this. Ugh. We were warned how bad that could have been and I'm so glad the drops worked and that was one more thing he as able to avoid. We were assured the timing of Radiation wouldn't change. Since then, there have been some changes sent to me, but they aren't locked in stone yet. We haven't heard from the Radiation people yet so we're not getting our hopes up just yet.

Thanksgiving the ride home wasn't so great. Brayden rode with Daddy this time and the silence with me in the car alone with my thoughts was deafening. I kept reaching for the phone to call someone and kept reminding myself everyone else had plans and was busy celebrating with their families. I think that's what made the weekend so hard was that there wasn't anywhere for me to run for those 3 1/2 hrs or anything to do to keep my thoughts somewhere else. It was just me, the road, and all the possibilities and re-living the past 7 months in my head and heart. I kept focusing on that we were lucky we got to walk out that day with Brayden and come home. I never want to rejoice in someone else's sorrow. I do want to remind myself how much more Brayden could be enduring with not even getting to be at home. I guess that comfort keeps me going.

We celebrated our Thanksgiving Monday night. Sweet Bryan picked up a turkey breast for me and groceries when we got home since we'd been gone and hadn't shopped for a week. The frozen turkey breast had to wait a few days to thaw in the refrigerator, but it honestly seemed to work out better that way. We truly acknowledged all the things we have to be thankful for this year and it certainly had a profound effect on all of us. The weekend flew by in a blink with so much to do in catching up on cleaning, laundry and more cleaning after being gone. His Oncologist was so sweet to check Brayden's counts for us before we left ACH on Thanksgiving. I almost wished we hadn't...he was Neutropenic. So we've spent the week being extra careful of germs since anything could cause his system to react with a fever (then hospitalization).

Tuesday Brayden had a round of 2 chemo meds, Vincristine and Asparaginase which is the two shots in his legs. It was so rough watching him endure that burning acid feeling in his muscles and his legs have still been sore. But we kept trying to focus on this being his last time to get this one. One more down! The staff at Highland's does such a great job. It just breaks me in two to see him in pain like that though. After getting the results of his bloodwork, I'm on high alert watching him for reactions. His hemoglobin and platelets were lower and near transfusion level. We go again Friday for another update on his bloodwork and we're just praying they've come up on their own so he doesn't have to endure a transfusion with all its many risks. After this much chemo, their bodies just can't make more cells on its own without help from the transfusions. He's been more nauseated this week. Wednesday was a really bad day and he really had me worried. Even with the nausea meds, he still wasn't himself. Thankfully Thursday he was improved, but has still been in pain, nauseated, and not 100%.

I'm thankful for 1 week nearly down without a Little Rock trip. Those drives are so hard on all of us. Next week we should be able to have a break as well, but still getting chemo locally and checking his blood counts frequently to ensure the last round of Ara-C doesn't have him in the danger zones for transfusions.

We're very close to our goal for the Red Cross Blood Drive. Most likely, we'll be in Little Rock, but there are a few pieces to confirm. Thank you to all of you who have signed up. If you aren't in our local area, you can certainly go to your local Red Cross and donate on behalf of Brayden. We all are so thankful for your generosity and your time to give of something that can help so many. Thank you all for your prayers as he draws closer to the Maintenance phase of chemo and can put the aggressive rounds behind him.