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.

Tuesday, November 24, 2009

We need YOU!!

So many have asked us how they can help or what they can's what we're asking. So many of you can give us and others an amazing gift - the gift of life in donating blood. It wasn't until we were sitting next to Brayden's bed hearing that he'd need to have a blood transfusion and the words that the nurse would 'check to see' if there was blood to match to give him that we realized how critical this can be. Check to see? That is so scary! SO many Oncology kids rely on blood transfusions after the effects of chemotherapy has wreaked havoc on their bone marrow and burned it out from beginning to make it's own blood. They rely on blood from donors just like you to get them through****Please sign up and encourage others to as well! We'd love to help spread the word to encourage others to give back this season!**** If you aren't local to participate in this drive, please give blood in your area. You can still give on behalf of Brayden's drive when mentioning his name. Read more to hear about Brayden's Blood Drive and the goal we have to help others this Christmas!

In this season of thanks, we have recognized how much we have to be thankful for this year. We want to find a way to give back and help so many other families this holiday season. What better way than giving the gift of life? As a way to help so many other Oncology kiddos and parents fighting, we have set up a Blood Drive in Brayden's name December 16th. What's great is this only takes a minute to visit the link and sign up to make an appointment! Simply make the appointment to give back in giving life to donate blood to help in times where there simply isn't enough supply to help these critical patients that can literally make the difference in their fight. - code 72712. Location: Bentonville Plaza, December 16th. Once you logon, there are directions for the Bentonville Plaza and appointment times to choose from. PLEASE SIGN UP TODAY! We have a goal of 50 donors, but we'd love to have more!! I know you can help us come together for a great turnout to support Brayden's fight and help so many other children. Thank you all in advance for giving so freely of something that each of you have that can save a life!
Bryan, Lisa & Brayden Jones

~ To read more about Brayden's Journey, see the attachment and read below ~

Brayden's T-Cell ALL diagnosis on April 22 this year stunned all of us in a boy who rarely got sick and was so healthy and energetic. This rare form of Leukemia has had him on an aggressive High-Risk Chemo regimen for nearly 7 months now. It's kept Brayden from school, getting to go out to eat or to a store, playing football or soccer again, and even from contact with his family due to the havoc it wreaks on his system to break down all the bad cells and begin re-building again. We've been so grateful for encouraging emails and cards of support from friends and community members. There have certainly been some dark days: grieving the loss of innocence in our sweet 9-yr old boy, the loss of normalcy, the loss of Brayden's hair and his involvement with his friends, celebrating too many holidays in strict isolation at home without family,and the realization that for the past 7 months and next 3 years, trips to Children's Hospital, isolation for his health and being immune-compromised, Chemo, blood transfusions, and weekly blood checks are our new way of life to help him kick Leukemia and get him back to playing football again! He's done so well on this aggressive protocol and we're thankful for a 78% success rate where so many childhood cancer treatment plans aren't so successful. There are many risks he faces for the rest of his life, including developing secondary cancers as a result of treating the Leukemia. We continue to hold strong to our foundation of faith and continue pressing on in this Journey we are now on as a family. In the meantime, Brayden is so strong and truly resilient. We're so thankful he's kept his sense of humor and his beautiful outlook on life. Thank you for coming here and joining us to hear more about how Brayden's doing and read more recent (detailed!) updates.

2 days to go...change of plans

What a day! We are all still catching our breath after an exhausting day. Brayden had a nice sleep-in until 10:30! We kept checking on him to be sure he was okay and there was no fever or anything going on. We were so happy to see Dad make it in safely last night FINALLY after a late start. Dad and Mom were up early - Mom was working...Dad was working on catching up on the paper! Seriously, Brayden still was feeling good this morning and woke up and had a great, late breakfast. I'm in such amazement what a stark contrast this round has been from the last time he had it. I so hope he can get by without going through that again. We're so close! Just 2 days to go with the yucky Ara-C.

Around noon it was time to head to Children's to the Oncology Clinic. Whoa...we knew it was bad when we walked in and there wasn't any chairs. We've never seen it so busy. After an hour and a half, we realized there was no way we were going to get chemo in time. We had to go to the Radiation center for Brayden's first appointment to get things set up and us acclimated with the facility and the process. A nurse came out and advised us to go ahead and then come back. Yikes. We left ACH and headed over. Brayden was in rare form - practicing his golf swing in the waiting room for Dad while I recapped his hospital stays, his diagnosis, his medical history, his prescriptions. I don't think it's set in for me as much as having to check that cancer box for the first time. Oh, that was hard. It's like that box is reserved for other people, not our Brayden. How can it be that after 7 months now this week, that still hasn't set in? I was so thankful for Brayden's humor and bright smile to distract me from the emotional impact of that paperwork.

We went back and got to speak to the Radiation Oncologist and his Nurse about the process. Within 30 minutes, our worlds were tossed upside down again. We were alarmed to hear his Radiation would be more than we thought all along and glad we questioned him. Thankfully, Brayden's Oncologist confirmed what we had been told - 8 fragments. The bad news? His Radiation Oncologist announced he'd start treatment in 4 weeks. I asked him - "4 weeks? No later?" His look said it all. He didn't get it. I said a little clearer, "Isn't that the week of Christmas?" His reply sunk me - "Oh. Is it?" WHAT?!!?! I know he's busy and this is our first meeting, but this time of year, I thought everyone knew the holidays were coming and the Christmas countdown. So that was the verdict. He'll have Radiation over Christmas - the 4 days the week of (including Christmas Eve) and the 4 days after (including New Year's Eve). We all looked like we had been kicked in the stomach. I begged...could we not wait 2 more weeks? Nope. The timing was critical. And, above all, we'll have to come back to Little Rock again for an appt to make the mold of his head gear that we thought they'd do today. Yuck. Poor Brayden's questions came a mile a minute the second the door shut. We were trying to keep him calm. None of us wanted to hear this. First Halloween then Thanksgiving and Christmas was just too much. Sure we'll be at home, Christmas Day, but we just didn't want to have him go through this at Christmas. The silver lining we were encouraging him to see? 2010 truly will be a new start for him - all the yucky, rough, hardest part of the treatment will be behind him and all maintenance in front of him. It wasn't enough to shake any of us out that stark realization. We're still trying to remain positive and slowly let this sink in and move forward.

We were all more than a little deflated and on edge. Plus it was 3 1/2 hrs past lunch. We rushed back to the Oncology Clinic and finally got to leave 3 hours later. I felt awful for the nurses. They work so hard and this had been one awful day for them too. We did a little something nice to cheer one of them up that has done just that for Brayden in the past. We hadn't gotten to see her in a long time because she's usually off on Monday's when we're there. Her tears and hug after a long, hard day cut into me. I forget how much they see. Right now Brayden's Oncologist is on the floor and ICU and will be working Thanksgiving Day and is dealing with so much himself. Another sweet little girl from our area whose future is so uncertain and hangs in the balance. It was a good reality check that even though this has been a bad day, we aren't alone and still have so much to be thankful for. Although my heart still breaks for them. We were lucky tonight. We didn't have far to drive this time. We were able to grab some food in the cafeteria and at least Brayden was still eating. We made the most of it by watching National Treasure after finally getting a treatment bed to start Brayden's chemo.

We're here snuggling down for the night. This is the first time Brayden's port has stayed access and he's a little weirded out by it. I am too. Especially after reading another mom's story how her son's was bleeding everywhere in the middle of the night. Hello. It's not likely I'll sleep well tonight without thinking about that and getting up a million times to check. We're so close and hoping he can still continue to get through it well without fever, without his counts plummeting, without impact to his system. Thank you all for the comments! Brayden had some smiles and laughs tonight reading them with me. Here's hoping tomorrow is a better day, and Brayden continues to stay strong!

Monday, November 23, 2009

The wonder of sheets

I was SO proud of myself. After cleaning the hotel room from top to bottom last night, I was still so anxious when we got back from Children's this afternoon. After work this evening, I had a brilliant idea! I promptly called for a sheet set from the front desk. SCORE! The flat sheet made a PERFECT cover for the sofa and the fitted sheet over the chair - yea! That way Brayden wasn't isolated to the bed or the chair at the table. SO much better!

Brayden was bummed to learn last night he had a spinal sedation with chemo this morning along with the Ara-C. We were so glad it went well. Seeing him come out of sedation is still so unnerving. It's so much better to see his bright, blue eyes and his funny chatter. Thankfully, he'll have a break from spinal LP's for a bit.

Tomorrow Brayden will have another dose of Ara-C, then we'll go to meet with the group who will administer his 8 fractions of Radiation. We've been thankful to hear some details from another mom. It can be a little scary, so we're hoping and praying we can stay calm for Brayden and this won't be traumatic for him. Basically we've been told he'll be fitted for a plaster mask to make a mold of his head. This will be used when he gets radiation to screw the head piece (once on him) onto the table to ensure the radiation stays pin-pointed to the right spot in his brain to treat those Leukemia cells present at diagnosis. Yikes. Just the process of making the plaster mold and the screwing in of the head piece is almost more than I can bear at this point. I know tomorrow is a big first step to acclimating Brayden and I hope it goes well.

Thankfully, I've been so amazed at how Brayden is continuing to do well. He was a little pale, but thankfully his bloodwork looked okay. His counts have dropped again, but he's got a little room still. We were warned next week won't be fun. After not eating due to his procedure, he was eager to have breakfast when we returned to the hotel. I'm just stunned he's eating healthfully and not having the nausea like last time. Smells would send him over the edge before and it was so hard to see him go through all that he endured. We're just praying this trend continues. One more day down - one more day closer to completion of this nasty round!

Sunday, November 22, 2009

Settling In

Brayden and I had a busy day getting prepped for leaving for Little Rock. Dad was awesome to help make sure the car was ready and do some errands as well. All my lists and planning worked okay. We were sad to leave Dad but he has to work tomorrow and will join us later. A sweet friend brought some goodies for us from my sweet Circle of Friends for our trip! Everything from snacks, fruit, water, cheese, magazines, yuumy lotion and on! Even Hershey got some yummy treats! We are so thankful for that bright point of the day and some things to help our week here be a little better. It didn't take long for us to dig in to the goodies!!

In the meantime, we told Dad & Hershey bye before heading down the road. We had an AWESOME time of singing Christmas carols and watching one of our favorite Christmas movies, Elf. Well, Brayden watched...I listened to his giggles and reciting of lines from the movie!

I was super nervous about being in a hotel while his counts are lower. I can only hope tomorrow's update will show that they're still decent. I did a full cleaning when we got here and implemented some rules to keep Brayden as safe as possible from germs. It's so tough! I don't want to talk about how many Clorox wipes I went through or what they looked like after cleaning surface areas, light switches, door knobs, remotes, phones, and the list goes on! Thankfully Dad was able to keep Brayden preoccupied via phone while I cleaned away in the bathroom! I'm so thankful to my work for donating reward points that we can use for this visit this week. If we're going to have to be here this long, it really is a nice location and surrounding. It's a good test-run for what we'll be doing when Brayden's back for 10 days for radiation soon.

We've been a little bummed this evening. I was looking over Brayden's treatment protocol and hadn't realized he would be having another sedation with spinal lumbar puncture and chemo injection. Last week's was kind of rough for him. He's been so sore from them. We're definitely praying tomorrow's goes smoothly for him. He'll have another chemo dose of Cytarabine (Ara-C), but our bright side is hopefully he'll be done soon and we can come back here to the hotel and he can rest. Tuesday, Wednesday, and Thursday we'll be back in the Oncology Clinic at Children's getting the last doses of Ara-C and kiss this chemo med goodbye! One more down!!

My friend Linda put a great challenge out there: Remember to be thankful always, but especially this week. I've really been thankful for laughter today. A good laugh is amazing. Hearing Brayden's laugh? It's truly miraculous and I don't want to ever take that for granted.

Thursday, November 19, 2009

Still chuggin'

I've been SO amazed at Brayden this week. He has worked SO hard and thankfully has not had the amount of nausea as last time. We go again later today for chemo and we're still praying for protection from the harmful effects of chemo, nausea, and that his counts will hold. Sunday night we'll have to head back to Little Rock and will be there for the week. Each day, Monday thru Thursday, he'll get the final 4 doses of this nasty chemo that we'll be happy to be past - Ara-C. We're trying not to focus on not getting to spend Thanksgiving with our families or having to be traveling and in isolation. We definitely know we have so much to be thankful for in how Brayden continues to fight and respond to treatment.

He's been working so hard to keep up with his school work and not fall behind. He was such a trooper yesterday still joining in on the webcam for school. I know he loves getting to interract with his friends and can't wait to see them again in person. He worked hard last night to make up for what he missed while getting chemo and missing the afternoon session of school. We had so many concerns at the start of the year with cognitive effects from chemo and we're so glad to not see those increase or worsen as he continues with treatment.

The local clinic where he gets chemo does such a good job with him. The staff is incredible and so patient and goes out of their way to be sure he's safe and protected in a time where he has close to zero white blood cells to fight off any foreign germs or infections. I'm thankful for a place where he's able to get chemo when we would otherwise have to be in Little Rock for a while. Plus I know he loves getting to visit with all the nurses who always make him smile!

We thank each of you for your continued prayers for Brayden's protection from the effects of chemo. I've been working hard at home to ensure everything is as clean and sterile as it can be for him. There will definitely be challenges next week with being away from home, so we appreciate prayers for his protection during that time as well as travels. Remember to appreciate all that we have to be thankful for in this season of thanks!

Tuesday, November 17, 2009

Last Admit to Children's!

We'll still be here every week (later monthly) at Children's in the Oncology Clinic for Brayden to get chemo for 3 years to come. But today marks a major milestone in his nearly 7 months of treatment. Last night was Brayden's last admission for Chemo, and we pray, the last time he'll have to stay in the hospital here! He got to go back to the dungeon (or the cave - Behave in the Cave?) and had the same room again. His sedation yesterday went well. Everyone noticed his lack of hair since last time, but JUST enough to do a tiny mohawk! He wasn't looking forward to yesterday. There were some tears that ripped my heart out. I just kept trying to help him focus on how this would be the last time he'd stay overnight, and he'll have a break from the spinals for a while that have really been causing a lot of back pain. He pushed through and did well.

The sedation dizzy medicine always gives Brayden a different type of reaction. Yesterday, it was a British accent while telling a knock-knock joke sweet Sedation Team Member Shannon had told him. You know the one - the old banana, banana, orange you glad I didn't say banana? He had a GOOD time of giggling with that one...and re-telling it over and over. Silly man. Thankfully, while sedated, they gave him the seasonal flu shot and H1N1 so he didn't have to feel them. His arm is sore, but that's to be expected. I was so glad they finally got enough in to give him his vaccination and will be a little less nervous.

Coming over to the unit to be admitted was an odd comfort. The sweet nurses and techs gave him hugs and hellos all around. He had a good dinner and we watched some cartoons after work was over. After the 2nd try, his kidneys were ready for the Cytoxin. But before, he jumped into my couch bed with me and celebrated with some popcorn he requested. Before I knew it, we were both snoozing so snuggly! He finally got his chemo at 10 and Ara-C with it as well. Thankfully, his stats through the night looked good. No fevers, thank goodness. The nurse just came in and told us he'll have Ara-C again at 11 and we should go home within a couple hours after that. I was glad he slept through all the interruptions through the night. I had to wake him up at 4 to use the restroom and he told me he was 'sleeping so peacefully.' Thank goodness.

He's very sore this morning from his procedure and, of course, could care less about food. I'm hoping and praying he'll have an uneventful ride home and the sickness won't be bad and he can continue to rest without fever. Dad's back at home waiting for us. Yesterday, after getting up at 3:30, we got stuck less than 5 miles from home in a wreck for over an hour with no way to pass. We were so thankful that we had just missed the wreck and that no one had been hurt in the one in front of us. We always pray for safe travels and we were definitely under protection yesterday and prayerfully, again today.

We've been praying for Hannah Grace for almost 2 months now since we first heard her story from a dear friend. She's also being treated her at ACH and needs your prayers. I have her link to her Caring Bridge site posted to the right. There are so many side effects to all of the chemo. What she's enduring is so scary. Brayden asks about her daily and has her on his prayer list on his school planner. Some days, I'm honestly scared for him to ask. We're hoping and praying for a miracle for her recovery. This morning, I was glad I had tissues close by after reading a poem her mom posted after seeing it from another site. So many families have shared this beautiful poem. I wish I knew who the author was...but we wanted to share with you. So poignant of what our real focus needs to be.

Once upon a special day in Heaven up above , the tiniest souls sat at God's feet, surrounded by His love. ‘The time is coming, very soon’, God said, ‘Do not be scared. Your family awaits your arrival, now let us get prepared’.

And so God looked upon these souls, in mute considerati​on. He knew the life each one would live, He weighed each situation.

The souls chatted amongst themselves, and wondered who they'd be. They knew the day grew closer; soon, they'd meet their family.

‘How would you like to change the world?’ God asked each soul in fun. The chance to change a soul, a heart, is held by only one.

‘I'm going to make the world laugh’, one soul said with a smile, ‘for laughter heals a broken heart, and helps us through each trial’.

‘Then take with you the brightest smile, and share your laughter well’. The soul thanked God immensely, and down to earth he fell.

‘And I'll remind the world to sing’, a sweet little soul told the Lord. ‘I have the gift of a beautiful voice; I can hit every note and every chord’.

‘You’ll have the gift of music then, a voice, lovely and strong. Share your gift with others, and let them hear your song’.

‘I will show compassion’​, the next little soul raised her hand. ‘Some people only need a friend, someone to understand’.​

‘Compassio​n is a good thing’, God said with much delight. ‘To you, I will give mercy. You'll perceive wrong from right’.

And so each soul shared every thought, their plans, their hopes, their dreams. And God explained that life, it is, much harder than it seems.

And as each soul began to leave in a scurry of laughter and fun, Heaven became quiet and still, for left was only one.

‘Come sit with me my little child’, God said with just a sigh. ‘Do you know how many you will touch, in a world left wondering why? Before your life comes to an end, you will know much strife, but you'll teach those who know you, to cherish the smallest things in life.

'And some may only know you through a simple photograph, they'll never hold you in their arms, or memorize your laugh. Some may only know you through the words they read each day, but you'll do something wonderful, you'll make them stop and pray’.

The tiniest soul raised her head up, to touch God's firm, strong hand. ‘Father, I am ready for the life that you have planned. And I will do the best I can without a word or deed. For you Lord, are the planter, and I will be your seed’.

She could already hear many praying, and although they had not seen her face, they were praying for her safe arrival, they were asking for mercy and grace.

‘What talent do I leave with Lord? What gift do you impart?’

‘All that you will need’, God said, ‘I've placed within your heart’. And so God kissed this tiny child, knowing all that she would be, and whispered as he watched her go...'You'l​l teach them . . . to love Me.'

Sunday, November 15, 2009

Priceless Memories

We had shared before how a dear friend had given us an incredible gift of a photo session to have our family pictures made. Even though I'm a crazy scrapbooker who's always taken up to hundreds of pics a month, we hadn't had family pictures professionally done since before Brayden was 2. I know...but when you have a tripod, I thought I'd do them myself! Little did I know what we were missing out on. We were very excited to meet Mindy and she went out of her way to work with us in a safe environment for Brayden. Even though Brayden was Neutropenic and losing his hair fast, it was that day or it would have to wait until January. We just felt such an urgency to get this done. So with masks, alcohol spray and distance between us and everyone else, we went to the local walking trail for a beautiful Saturday morning to get our pictures done. Mindy really captured some beautiful moments of us just being a family together.

After seeing some initial sneak peeks on her blog, we were overwhelmed. Then after seeing the final gallery Friday night, I was overcome with emotion. We may not always be able to afford to do this, but I'll be sure we do it as often as we can in the years to come. What an amazing opportunity and now we have no idea how we'll decide which pictures to get. For now, I can't stop looking at them. She's captured Brayden's innocence and his love, his caring heart for us and for Hershey and how he hugs with all that he has, his determination, (especially when throwing a football!) his love of nature, and our love for him. Truly amazing.

We wanted to share a few of those with you - thank you, Mindy! Be sure and check out her beautiful work! For now, I'll go back for another look and more tears of these priceless memories that you've created for our family!

Saturday, November 14, 2009

And it continues

The good news is Brayden's blood work results today shows he's not Neutropenic. I'm glad his counts are at least above 1,000 - but just barely. Once he starts this month of treatment, he can't stop. So the higher the better. We had been fretting the risk of not getting to celebrate Thanksgiving with our families. I was still hoping there might be a way. It turns out that it will be very unlikely we'll get to celebrate as planned this year.

Brayden and I will leave at 5am Monday morning for Little Rock. He'll be admitted for an aggressive round of chemo and we're hoping to go home Tuesday afternoon. He'll then get chemo locally Wed & Thurs. This is the round I've been dreading - the last aggressive round. This one makes him the sickest and is the one that's been the culprit of his previous blood and platelet transfusions. It's also the one that's caused him to be Neutropenic the longest, so it has long-term impacts. The following Monday the 23rd, we'll be back in Little Rock again for the last half of this chemo (Ara-C). He'll have it again locally Tues & Wed, then since the local clinic is closed, I'm guessing we'll be back in Little Rock on Thursday (Thanksgiving Day) for the final dose of it. Last time this one made him very sick for the entire 2 weeks.

We know the most important thing is getting Brayden complete with only healthy cells remaining and we'll be focused on that. Yes, we're so sad and disappointed but we'll try to make it as little of a deal for Brayden as we can. We'll just do something here maybe that weekend once he's feeling better to eat again. On the days we'll get chemo locally, it can be ugly. It's taken hours before to get him enough iv fluids and anti-nausea meds to help him tolerate and get the next dose of chemo. We can't get through these 2 weeks fast enough.

The next 2 weeks after all this we will be back in Little Rock for those Monday's. He'll get Vincristine (=IV push) and then his LAST and final Asparaginase shots in his legs. Radiation is after that. So again it becomes tricky for Christmas. I don't want to even think about that but my hope is his counts improve to where we can see everyone - but somehow not enough for him to get Radiation. I can dream, right? His counts will drop again after Radiation, which will be 2 weeks spent in Little Rock.

I hope all the details help to put it all in perspective and easier to understand for everyone what we're up against. Just like Halloween, we'll do what we can from home to celebrate with Brayden. We'll miss everyone at Thanksgiving and can't wait to get together again soon. For Christmas, I'll still be hoping for a miracle. We love everyone and are thankful for all the support and love and encouragement. We're getting closer in some ways and in others, it still seems like we're not to base camp yet on Mt. Everest. I'm clinging to the good stuff that the most aggressive chemo he's endured in this High-Risk protocol is ALMOST over!! So we'll keep finding the little steps to celebrate so keep moving us forward.

Friday, November 6, 2009

Bye, Bye bologna

Nope. Remember I don't give bologna the spell check recognition it's insisting with the capital letter? We couldn't have just completed another month of steroids without talking about Brayden's beloved bologna again. Yes, he again had an affinity to bologna for this round. And 3am feedings, not sleeping through the night. We woke up yesterday morning so rested...then completely panicked! Was he okay? Why didn't he wake me up for the first time in over a week? It was so good to see him resting peacefully and find out later, yes, he really had slept through the night. He didn't have to take a pain pill the last 2 nights. And the final sign that we knew he was finally feeling better? He was playing football in the house again, diving in the floor, tackling, and laughing. It was the best kind of gift. It had been an incredibly tough week on everyone and so hard to see him in so much pain. It's been a complete 180 the past 2 days and we're so thankful. Hearing his laugh today has to our ears.

We got Brayden's bloodwork done today and found out his counts are too low to have chemo on Monday. He's in the Neutropenic stage, so we'll have to be really careful and continue into the 5th week of Strict Isolation. Dad was great to rent a move for us tonight to enjoy. We have loved getting some fresh air and sunshine in this beautiful weather the past couple of days. And, with football again this weekend to enjoy between the Hogs and Cowboys, we'll keep busy.

We are SO excited about tomorrow. A dear friend gave us an incredible gift and paid to have family pictures taken for us. It's so special and something we've put off for far too long. We've had to reschedule once due to Brayden being so sick from chemo. I'm so glad we scheduled them for tomorrow. His sweet head is going to be bald (I'm guessing) by Monday. It's been falling out SO fast in the past few days. I'm nervous to touch it with gel tomorrow! It might all come out on the gel on my hands!! He's still taking it all in stride and I love that. He knows he's been grateful to have it for the past 6 months. It's still going to take some getting used to for all of us and each day he's looking different as it falls out. I've realized how much better his eyes shine! His sweet, blue eyes that are so full of joy today. It's been a great day.

So we'll try again next Friday to see if his counts are high enough to proceed. He's SUPER happy to have another week off. And, I'm a little thankful too because of starting the next round. Of course we're still nervous about germs and none of us having the flu vaccine yet. But we've done well so far! Brayden's focused on Christmas plans. Thanksgiving is looking very tricky for us, as he'll most likely still be in isolation. Meanwhile, he's looking at every catalog and commercial with big eyes while planning his Christmas list. I guess he's still 9 and a normal boy afterall!

Monday, November 2, 2009

Let's see...

A lot has been going on since my last update. We've been busy with sleeplessness, waking up at 3am almost every night, lots of steroids thus lots of snacks, and pain. Unfortunately, Brayden has been in a lot of pain the last 10 days but the worst of it since last Wednesday. He finally gave in and took a pain pill 2 nights in a row at bed time and it really helped him to get some rest. He's still hurting all day in random places. His spine is hurting a lot and he's pointing exactly to the area where his Spinal LP chemo is done. Poor guy. It's been so hard seeing him like this. I was so thankful he gave in to the pain pill, but I know how bad it must have been if he relented. He's not taken them many times before. It was literally making me nauseated to see him hurting so much and be so powerless to help him. He told me today he "feels like an old man inside a young person". Ugh...what do I say to that? It is such a helpless feeling to know what to do to help him.

Remember his streak about no naps in the 6 months? It's broken. He's napped every day from Friday on. It's been so unlike him. I know it's good for him to rest and get good sleep and the steroids side effects aren't helping that. But it's been tough not seeing his energetic self lately. He's dragging a lot has very small spurts of energy that dissipate way too quickly.

The last two days he's told me he's lost handfuls of hair in the shower. Sure enough, his towel after his shower this morning was just full of hair. We're wondering if he'll still have his hair before he gets to radiation. He knows he's been so lucky to have it this long and commented again this morning how long he's had it. It still rips at my heart to see those clumps and wonder how hard it's going to be to see him without hair. With his hair, you can almost 'get by' without seeing the effects of cancer on him 24/7. Without his hair, there's no hiding it. The emotions of it, the effects of it and the constant reminder of this awful disease is staring at you. There's also no hiding it when we're out in public either in the future. So we're preparing him for that since that's been so hard on him in the past to worry about.

Halloween went okay. I had planned a mini carnvial here at home since he was still in strict isolation from his Dr. We baked some crazy cookies and decorated some monster cupcakes, which is a tradition. The highlight of the night was definitely getting to see his cousins on the webcam and show off his Captain Rex Star Wars costume. He was not himself all day. I tried convincing him to wear his costume more, but he just wasn't into it. Thankfully he had fun doing the carnival and we did a little craft. He was sad not to get to hand out candy and sad that he couldn't be with his cousins like we do every year. So we just wasn't the same.

I had a big mix-up with his treatment schedule and we were all so relieved to hear from his Nurse C Friday afternoon that this week is an off week! To not have to make that trip this morning was a big relief but most of all, relieved to know Brayden can have a small break. We'll get his counts locally this Friday and find out for sure if we return Monday the 9th for the 2 weeks of chemo I've been the most nervous about. For now, we had a BIG celebration last night that he took his last dose of steroids that he'll have to take for about a month. The effects will still be in place this week for his system, but just knowing we were 1 step closer was very exciting and reason to celebrate.

This week, please join us in praying for relief for Brayden from all the pain he's been having. He's having a lot of trouble walking this week, pain in his upper legs (most likely from the chemo shots,) pain in his spine, and was scaring me yesterday hearing him complain of pain in his hands. The Neuropathy he's been taking medication for since Month 2 can effect other parts of his body and this has concerned me for a while. This is an effect from the chemo med he gets most often. We pray it won't worsen or spread to other areas of his body and the medicine would continue to work. We're praying for peace. He's had a lot more emotional ups and downs this week but hearing his fears about the diagnosis in some very negative views for the first time was so heart-wrenching! I'm glad he's talking about it. It just pushes my heart past the breaking point sometimes hearing your baby in so much heartbreak and pain and calming in him the same fears we have daily. We're praying for rest for his body this week and recovery and strength before heading into the next phase of treatment. Thank you all for the support you provide our family in persevering through this journey...

Wednesday, October 28, 2009

Another one down

We were glad to say goodbye Monday to another chemo med Brayden won't have to have again. This one's been kind of ugly to him and came with some side effects that he wasn't happy about. Thankfully this Monday in clinic was a lot better than the previous weeks'. We enjoyed playing several games and I remembered the Easy Mac so hopefully him eating helped a bit. Brayden did so great doing schoolwork in the car on the drive down. He did the pre-hydration, then 2 chemo meds, then the 2-hr post-hydration once at ACH. Once he got the second anti-nausea med, he was drowsy. It amazes me how he likes the sedation 'dizzy' medicine but not these that give him that feeling or the Benadryl he took afterward. It actually makes him a little mad because he can't stay awake and it makes him dizzy. I kept thinking how nice a Benadryl sounded after not enough sleep and the long drive and another day of waiting in the Infusion Room for treatment! Thankfully he was able to get some good sleeps on the drive back home. And then woke up and realized he was on steroids and had missed a couple of meals! So he did some making up for that at home before finally giving in to bed.

This morning and all day he's not been himself. He's been so pale the last two days we thought for sure he'd need blood. Thankfully his counts were all okay...they'd definitely dropped, but not to that level of being nervous. His eyes look different today and he's not been as peppy. He's eaten well and gotten lots to drink but he's hurting a lot today. Of course, he refuses to take anything. He's felt nauseated so we've kept the Zofran going all day. Tonight we had to move to Nausea med #2. I tried reassuring him it would help him feel better AND he could get some sleep. It took a while but after some back rubs, he finally settled in. I could tell he was hurting. We've heard that's common with this chemo he's had now 3 weeks in a row. Days like today are tough. It makes you want to hide away from real life (school, work, responsibilities) and just curl up and love on him and do nothing. It's so infuriating because I push through and encourage him too and we both keep going in hopes it keeps some kind of normalcy. Then when things are quiet, I just don't know how we will do it again tomorrow. But we get up and keep going.

We'll have to stay a couple nights in Little Rock coming up. I'm really nervous about these next 2 weeks. I've referred to it before. This is the last round of these 2 chemo meds that have given Brayden the most trouble in previous treatments. Cytoxin and Ara-C are begin Monday and he'll have to be admitted and monitored for kidney function. It's got a positive side, as this plans to be Brayden's last admission to AR Children's Hospital for chemo. Going forward, all chemo for the next 3 years can be administered in Clinic! We'll try to stay focused on that to get us through. We're praying for Brayden's protection and thankfully with being on steroids, he'll be strong going into this tough round. He'll have chemo daily Monday thru Thursday next week and the following week as well. This is the one that can cause him to be Neutropenic and having been in Strict Isolation for nearly 4 weeks, that will be a bummer going into the holidays. More than anything though, we just pray he continues to be protected. We're praying he's protected from the harmful effects of this chemo round and stays strong, that his counts hold up and he's protected spiritually and emotionally as well. Thank you all for your sweet comments and encouragement. It's been a rough few days personally and those have been such a comfort. Here's praying tomorrow is a better, brighter day all the way around.

Thursday, October 22, 2009

Celebrating Brayden...6 months & counting!

Last night we decided to surprise Brayden with a big celebration. It was a little tricky; he's still on strict isolation from his Oncologist's orders. Dad was SO helpful in doing the running for me since I don't get out of the house much anymore while taking care of Brayden. He picked up a surprise cupcake-cake ("Brayden's our MVP", football theme, of course!), some little balloons for us to blow up, and some streamers. Dad hid the loot and after showering and changing clothes from work germs, took Brayden for a fake ride in the truck. Meanwhile, thanks to Nini's help, we QUICKLY decorated and put up the posters everyone made for the Chick-Fil-A night.

I also made another special poster for that I wanted to use as the centerpiece for his celebration. Brayden's 6-Month Journey...Look How Far You've Come!! I went through and recapped for him how much he's gone through in a visual sense. We definitely wanted him to grasp just how much he's accomplished in this Journey to fight Leukemia in this 6-months. We wanted to celebrate him and make sure he knows how proud we are of him!

His reaction was so sweet. He was so excited and so thankful and I loved the hugs he kept giving me. The evening had its tough moments while hearing Brayden recall a lot of the emotional details of those first 24 hours: the ER visit, the fear, the life-flight to Arkansas Children's Hospital, the diagnosis, the days spent in PICU, then the Oncology floor stay and visually realizing how different his life would soon become. He remembers so much more that I wish I could protect him from, but hearing him recall it, he's so positive and I'm so thankful for that. We've always taken our lead from Brayden, yet try to approach everything as optimistically as we can. Everything he endures is in an effort to keep him safe, healthy, and free from relapse.

Seeing the counts of all that he's done was really more than I think any of us realized. He took pride in those stats...well, some of them he'd rather forget! We went through his beads and it was almost too much seeing how many he has. He wore them as a badge of honor and kept reminding us, "this is just the first 6 months! I still have 3 years!"

So here's to Brayden! You are such a strong boy and we are SO proud of you! We love you so much and want you to remember how much you've endured and how hard you've fought. Here's to all you've accomplished in your 6-month Journey:
- 129 Beads of Courage
- 132 doses of Chemotherapy from 8 different drugs
- 68 blood draws
- 1,748 pills taken
- 11 ACH Clinic Visits
- 8 different AR Children's Hospital stays for a total of 31 days
- 4 days in PICU
- 26 Highland's Visits
- 1 Life-flight on Angel-1
- 6 Chest X-rays
- 4 Catscans
- 1 Chest Tube
- 2 Echocardiograms
- 1 EKG
- 13 Spinal LP's w/chemo and sedation (yeah! dizzy meds!)
- 8 Bone Marrow aspirates
- 2 yucky foley catheters
- 1 platelet transfusion
- 2 blood transfusions
- 1 port surgery
- 8 PICC line dressing changes (this # seems like it was WAAAAY higher with the tape nemesis!)
- 224 PICC line lumen flushes with van-hep & saline
- too many alcohol wipes and clorox wipes to count!
- 2 proud parents and many other friends and family who love & support you!!!!!

Tuesday, October 20, 2009

We'll never be the same

I don't know if I've said it here before. I'm so thankful to have Brayden as a son. I'm so proud of his strength, his endurance, his tenacity, his resilience. I'm proud of his sweet spirit, his kind heart, his sense of humor, his love of family and God. I'm proud of how he has gone toe to toe with this battle over Leukemia and hasn't backed down and is ready and willing to face whatever it takes without question. I'm so proud to be his mom! He amazes me and I pray I can say it enough to keep reminding him that he is strong and he is able to fight!

Today is a day that we approach with hesitation, amazement, and thankfulness. 6 months ago we felt as though our world was being ripped apart and in those seconds, we clung to God and held to His promises, we clung to each other as a family, and lived literally second to second in praying God would save our son. I was thankful for growing up in Church in those early hours and wishing I still knew more about how to pray. I've shared before here how none of that matters to God as long as you long as you cry out to Him. I'm thankful for that foundation in which to lean on and to trust. I remember as a mother having a pain I never dreamed possible in seeing my son in harm, in pain, and being powerless to protect him. In all of that though, we remember a lot of good. We remember love, and emails, cards, phone calls, prayers and prayers upon prayers, family, hugs, support, words, knowing eyes, and little ways of helping that meant so much. A yard mowed, mail picked up, a sweet 4th member of our family (Hershey) being cared for, a bottle of water, a person to drive family to Little Rock, a Pastor to pray with us, staff encouraging us, the RIGHT Oncologist on call at the right time to have the wisdom to take Brayden's care in the direction to help him quickly. And the list goes on.

As I have began this post, my heart takes me back to where we were 6 months ago, hour by hour, and the emotions come in like a flood. I don't have many moments away from Brayden to be still in the moments with where we're at. In the few times I have the quiet, it's still there lurking at me. I don't know if or when it will ever be something we can think about or look back on and not become emotional. It's so much to comprehend and try to rationalize. It's irrational seeing your child battle cancer. Even yesterday in hearing someone say "since her son was diagnosed with Leukemia..." Those words sent a knife through my heart. I hadn't heard someone else say it. It's still unreal and had me jolted back into reality when thinking, "I wonder who they're talking about." I think we protect ourselves and don't say the words. I know I do. It makes it seem less real or impactful or dangerous or realistic. And yet, I am faced with it each day in looking into Brayden's blue eyes. It is real. I can't hide it from him or run from it. This is his and our new reality. Life truly will never be the same.

But we're thankful...we've gone back to this before and it's the things to be thankful for that have kept me moving forward and getting up another day and continue fighting with Brayden. We're thankful our lives have been changed in hopes that we can each be better through it...not because of it. While driving yesterday for a meeting with Brayden's teacher and seeing traffic, people rushing home after work, I found myself gasping at how beautiful the trees are...I've always loved the drive to and from our house. It's like the trees bend over the road and hug you. And with the sun shining so brightly through, it's like a postcard! Did I miss this before or take it for granted? This is our 4th fall here. I've driven this road before. Was it always this jaw dropping? I pray we never take it for granted again. I pray we never take this beautiful life for granted again.

We wanted to share some things with all of you. I know all the names and treatment protocols, and blocks of treatment all run together unless you're living and breathing it every day. I think it's incredible to see how far Brayden has come. We're so thankful for all the people that are working hard to help ACH and Highland's

Fall beauty

What a day Monday...we loved seeing all the beautiful fall foliage on our trek south. The colors were awesome on a bright, cloudless blue sky day. The beauty and serenity was interrupted with a huge thud sound. I guess that bird I saw out of the corner of my eye didn't quite clear the car windshield! Brayden wanted to know if the bird was okay. YIKES! Judging from the feather marks and smudges on our windshield combined with Daddy's speed of 78 mph, we're guessing it didn't make it. I guess you don't need an Engineering degree to figure out that one! We instantly said a prayer after being that shaken up! Thank goodness the windshield was okay. When you're traveling 500 miles per week for the best care for your sweet boy, you come to rely on your mode of transportation in a whole new way.

Daddy had to work this weekend but we were thrilled to get to watch a few minutes of cousin Caleb's football game from the car Saturday. Then we were so happy to get to go to the mini-pumpkin patch at Mrs. Linda's garden! Brayden was so thrilled and kept saying how nice it was of her to share her pumpkins with him. He was loving the cows, the farm, taking it all in. He loved picking his pumpkins out and the drive out there. Thank you so much to Heather too for the offer! What a wonderful gift! Oh, and another event for our weekend? Brayden's 5th haircut! Crazy, I know! He's so proud of that and it's a reminder of another blessing in all that he's had to endure.

We worked a lot on schoolwork this weekend and Monday Brayden bolted out of bed to get ready for the big trip. He was so energetic (after the week of steroids) and did SO AWESOME on school work on the way down. then about 30 minutes before arriving at ACH, he started getting nauseated. We're not sure if it was the anticipation, but we were really worried. Thankfully he got some IV meds going quickly. After a lot of foot rubs, we FINALLY got him to take a nap while in the hospital bed prepping for chemo. I was glad he could sleep and hopefully avoid the nausea. It was bad when he would wake up or turn over. I was so glad Bryan was there too. They pre-hydrated him for an hour AND post-hydrated him for 2 hours. He was pumped up on 2 anti-nausea meds with the hope of not sending him home sick. I was dreading that drive and kicking myself for not packing extra clothes just in case. We gave a Benadryl preventatively and were so glad he slept on the way home.

After last week, I was truly dreading today. Being at home alone today with a sick little boy (and needing to do a presentation via phone) was making me worry. I was so thankful when he woke up and within a few hours, was back to himself! He was a little yucky this morning, but nothing like last week! What a relief! Even though I hated him being sick yesterday from chemo, I was glad that if it had to happen, he was there where he could get other meds that work quicker and get it behind him for the rest of his week.

It was so sweet to hear his classmates cheering for him when he was able to join in on the webcam for this afternoon's session. That opportunity to participate has been SO good for him. We're very thankful for the gift to the school to allow him to stay involved and caught up as well as have a chance to socialize for a bit! We'll still be in isolation for 2-3 more weeks and then it could turn into more from the next chemo med that's coming. We're still doing mouth care to fend off the mouth sores. For now, we're just grateful he had a good day today and tomorrow is behind him. We enjoyed the beautiful sunshine again today and seeing all the leaves starting to fall and appreciating God's beauty and his creation. Oh...and buying more groceries. Did I mention he was back on steroids again?!?!

Thursday, October 15, 2009

Is it Friday yet?

Brayden started feeling better Wednesday, and was closer to himself today. I know he isn't feeling 100% yet because he's more quiet and lethargic. But he's pushed on and did great with school participation via the webcam today. We've noticed his cheeks are really red from the chemo and the steroids. This afternoon was rough. He had to get 2 chemo shots in his legs and an update on his counts via his port. We went to the local clinic. I was so thankful they had a room cleaned and sterilized waiting on him, especially with him being in strict isolation, so we were able to go straight back away from other patients. He was upset about the shots all afternoon. We used the numbing cream on them to try to help. Just before it was time to get them, we said a prayer. He was so brave and the nurses did an awesome job of working together to give them at the same time. I heard and saw it was tough for them to fight back tears seeing him. Just prior to getting the shots he was just wishing he could be anywhere else but there. That is the hardest times. When you wish you could take it for him. Take the pain and the shots and the attack on your body and everything else that comes with it. The shots really burn. They were great to bring some heat packs for them and I did my best to take his mind off it. Thankfully within about 10 minutes, he was feeling some relief in the pain from the shots.

When he asked if he'd have to get them again, my breath caught. I've always promised to be honest with him. Thankfully it looks like he'll only have the shots once more next month. I'm praying there's a way they can give it to him while he's sedated. It's so traumatic and painful. We're back home now and celebrating with a movie dad picked up after work. Brayden's been having fun playing in a tent we made for him in the living room! We're going to try to sneak to a friend's family's garden tomorrow for pumpkins. With masks, of course. So thanks to Heather and Ms. Linda for such a sweet and gracious offer. Dad has to work this weekend, so I've got some tricks up my sleeve for some fun things for him to hopefully pass the time and keep him entertained and happy.

For now, we're praying for no side effects and watching him closely. He had to stay for an hour after the shots and be observed for reactions, so we're thankful the first hour was uneventful. We leave out again Monday morning for more chemo. So definitely we're praying for continued protection for his heart and organs, for protection from infection since his immune system is so suppressed right now. We're worried about him being so sick again the day after like this time. We just want to minimize the burden for him. No mouth sores yet, so that's certainly something to be thankful for again. We hope everyone enjoys this beautiful fall weekend!