Jones Family

Jones Family
November 2009

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...