Jones Family

Jones Family
November 2009

Monday, June 21, 2010

Little Rock Update - Maintenance Round 3

A day of many milestones - 14 months since diagnosis. 3rd round of Maintenance. 1st big chemo roadblock.

We're all a little battered and beaten after a VERY busy weekend. My sweet sister had her wedding reception and there was a flurry of activity since Friday night. Brayden said it was 'official' now that he has a new Uncle! Yesterday was a lovely Father's Day brunch with new family that was truly wonderful. After not much sleep all weekend - and still catching up from the hospital stay - we were up at 4 to leave out for Little Rock today. It marks the start of Brayden's 3rd round of 12-week Maintenance chemo cycle. He has 9 more remaining before official 'end of treatment.' Today was a big question mark in our minds with all the craziness of Brayden's counts in the last month, the blood transfusion, the ER trip & hospital admission and lower counts. It is rarer to have to have a blood transfusion during maintenance and we were reassured by this by our awesome Oncologist, but then questioned about it by a nurse. So we tried to disguise our concern...I'm getting ahead of myself. I'm just full with questions and remarks and comments and reassurances yet more questions and concerns. Back to the trip...thankfully, it went smoothly. The start of a cycle of treatment (1 every 12 weeks) is tough because it kicks off with an LP or lumbar puncture with intrathecal chemo (Methotrexate). This is to check for Leukemia cells to remain clear of his spinal fluid to treat the Level 2 presence of cells at the time of diagnosis. This spinal chemo has been on-going as well as Radiation to combat and treat the Leukemia presence in his brain. In enduring this treatment, it begins with a sedation which means no food or drink after midnight. It's never an easy trip for Brayden, but luckily he slept this morning and it wasn't so bad. His sedation began shortly after 11 and he did well. Prior to his sedation, Brayden had his port accessed and blood drawn to do lab work. This was the first time Brayden didn't make counts in order to have chemo. He needed to have ANC's above 750 (500 is Neutropenic). Today he was 660. I've said it before and I'll say it again - his Dr. can tell us the building is on fire and not incite panic in us. He's truly amazing. He was reminding us how typical this is for treatment and how Brayden is the only kiddo on this treatment protocol that's made it this far without being interrupted with lower counts. What this means is he didn't receive his iv Methotrexate and only received his other iv chemo, Vincristine. This one doesn't affect his counts. His nightly chemo, 6MP, will also be skipped this week. This will allow his bone marrow a chance to recover. He started steroids tonight so that will really give him a boost. He told us next Monday when he receives labs and chemo locally will really be telling that week and the one after on how Brayden is doing. He's thinking Brayden is still fighting off a bug of some sort. The lower counts, the ER visit and hospital admission, his elevated liver enzymes, the need for a blood transfusion. Hopefully the steroids will help kick that too. His Dr. was concerned if we didn't hold chemo, it would further diminish his system and result in another possible hospital stay from neutropenic-induced fever. So we know this is a common occurrence and were warned about it. I guess like the fever, this is another first in his treatment and is catching us off-guard. It's scary to be afraid of the poison in your child at first and then you come to realize it's what will save your child's life. You come to rely on it and it's scary when it isn't able to be given. Your fears creep in of what-if with the Leukemia not being battled for a week with aggressive chemo. He reassured us of another child on the same protocol as Brayden who hasn't been able to have chemo for 6 months. I looked at Bryan later and realized again how well Brayden has done and endured this treatment. We have to look to the experts and trust them and put our faith in the One that holds Brayden. Again - trust. Sound familiar? His liver enzymes continue to be elevated. If that continues, his chemo will have to be adjusted down. Not something we want to happen...his hemoglobin, even after the transfusion, was a few points lower than what we expected. We're certainly praying his system bounces back, he strengthens this week without the chemo, and he's able to kick whatever his system may be fighting. We're praying his liver strengthens and all the trauma the Methotrexate and 6MP chemo is putting through him to kick the Leukemia doesn't weaken his liver to that degree.

We've had an awful night with the Pharmacy. I'm thinking after 14 months now, wouldn't they be expecting the same monthly prescriptions? I've learned in the last few weeks I have to stay informed and be Brayden's advocate. The wrong dosage and directions were given on a prescription and another was incorrect. Scary. 6 phone calls finally got the prescription even filled. All the while, we were rushing to get his meds done in time for him to have them with dinner. My days of working at a Pharmacy doesn't lend me to be lenient at all. I guess I've been there, done that, so what's the big deal? I know mistakes can happen. It just reaffirmed we can't let our guard down when working to be a parent and protecting our sweet boy.

Thankfully Brayden didn't 'emesis' today, as he put it. He enjoyed sharing with all the nurses how he got his first haircut last week since all his hair grew back in. We had to cut off all his cute curls and his chemo highlights, as his Dr. told us. He was adorable but getting SO shaggy so we made the appt before the big wedding reception and pictures. It certainly makes him look much older! We found out today Brayden has grown more since his last visit. He's pumped to not have to take his nightly chemo med for a week. The little things, right? He enjoyed catching up with some of his favorite nurses on how he's been doing since returning to school and now being out for the summer. He had a good day.

Brayden says to tell everyone he says hi. We enjoyed a nice walk on this 1st day of summer with Hershey after the sun had gone down just enough to bring some heat relief. He's a bit sore from the procedure today but the walk was good. I know we'll all sleep well tonight. Thank you all again for your love, prayers, and support!

Wednesday, June 16, 2010

Catching everyone up

Wow...just when I'm sure no one is reading, I get some sweet reminders that you are still out there. I miss blogging and sharing my heart. It has been a crazy roller coaster several weeks. I guess, it's safe to say if I'm not writing it's because my heart is so heavy it's hard to know what to say or where to start. Let me kick it off by saying thank you to all of you who came and gave of your time and donated to our Blood Drive. Brayden was SO thrilled to get to join us for half the day and thought it was so cool to see how it all happens. Being the recipient of the blood donation, this was amazing for him to see it all starts with one person unselfishly giving of their time and braving the needle. I was also thrilled to be able to be there in between other priorities. It was so heart-warming to be encouraged by each of you. For those that I missed, I hope my hubby and friends and Mom helped you to know how thankful we are for your gift of donating life. Brayden was literally smiles & jumping up and down when our last donor put us 1 unit over the goal! It wasn't looking too good in the beginning so thank you for all the donors who helped make Brayden's 1-year since diagnosis blood drive so special and allowed us to give back and help others through the Red Cross.

Brayden has had a tumultuous few weeks. He's had some things that caused me to take pause on his blood work results. Week before last I had to travel for work and was petrified for Bryan to take him to get chemo locally without me. My reassurance was our awesome nurse was there to hold down the fort for mom since I couldn't be there. I smiled from ear to ear when Bryan took a pic with his phone and texted me the results. I guess it was the next-best thing to being there? The boys did an awesome job and I was at ease knowing his awesome nurse was at the helm. I did however begin to worry a bit more. The next day Brayden had a nose bleed and wasn't eating. He just hadn't been himself. I was thrilled to finally get home...only to be sidelined with a fever. I was furious at myself. No matter how much Germ-X and precautions I'd used, I guess being at the Mall of America, one of the busiest airports, downtown in a huge office building and hotels, I still caught a bug. I was hoping I was finally on the mend after 3 days of on and off fever and feeling horrible. We went to get chemo for Brayden last Monday locally and his blood counts had dropped again. His red cells. As I looked back over the previous weeks in the journal I've kept for him, I saw the pattern. I was panic-stricken. All the awful worries and fears creep back in. I remembered asking his Oncologist once Brayden hit this Maintenance phase of treatment about blood transfusions and him saying they rarely occur. Why was it looking like Brayden would need one? In those moments, it seems nothing matters but Brayden. Life seems to stop around us and I soak him up. I was a wreck. We decided with his nurse to come back in 2 days and check his levels again. The concern was if we waited until this week's chemo, his levels could drop too low. Brayden had just that morning complained of dizziness again and again and had been sleeping more than normal. He was already exhibiting signs of low red cells. We returned 2 days later and again his levels had dropped. It looked like the blood transfusion was imminent. That morning he'd again complained of dizziness, had slept more than normal, and said he could feel his heartbeat in his head. 3 hours later, we were heading to the hospital in Fayetteville where he'd had his last blood transfusion in December. Thankfully his port was accessed at the local clinic and we were hoping things would move fast. They didn't. It took 7 hours before the first unit was ready to administer. Neither of us slept much that night. His vitals have to be monitored so closely during a blood transfusion with all the risks of reaction that can occur. Thankfully, he seemed to do well. We were headed home the next morning, exhausted and hoping him being juiced up would help kick start him back to normal. We talked a lot about the Blood Drive that night and how we had heard at the clinic earlier that the hospital wasn't sure if they'd have enough blood for him to have the transfusion. Hearing that again is so scary! That's why we've had the two previous blood drives in order to prevent that from occurring. It's very startling to hear that and not know where you might have to go or how far you might have to drive so that blood is available to help these Pediatric Oncology kids keep fighting.

We had been home not more than a few hours when Brayden was in pain. I knew all the warning signs to look for and these didn't appear to be it. I had been checking for fever every few minutes after we came home, as that's usually the most common reaction after the transfusion occurs. Suddenly, Brayden was in tears in the fetal position in his bed. His back was killing him and then he went into tremors. More than shakes or shivers. It was awful. It took me a few minutes to grab my Leukemia book and look for this reaction - nothing. I called his nurse at ACH and left her a message. We didn't know if it was serious. Were we over-reacting? Then it got worse. He was crying out in pain in his back and then his legs. I threw on a change of clothes after giving Bryan the look. He hadn't seen that look since last year when we took him to the ER. Everything seemed to be in slow-motion. It seemed once I knew we needed to go, we couldn't get there fast enough. I rode in the backseat with Brayden, who was upset we were having to go back to the hospital. I called the local clinic and we started out heading there. It wasn't too long in our drive when I called back and we changed plans. We were heading to the ER. I did my best to keep Brayden calm. Suddenly, he knew he was going to be sick. Thankfully we were prepared and the poor baby threw up everything. I knew it was worse than I thought. Within minutes, I felt his head getting hot. It happened SO FAST. This was the first time I'd felt his head get hot. It's the scariest thing because we'd been warned and taught what to watch for and told how dangerous it is when patients spike a temp. We've been so blessed that this hasn't happened to Brayden.

We burst through the ER doors and I was trying to stay calm to communicate our fears. On top of the low red blood cell counts, Brayden was Neutropenic. Being in the ER was the absolute worst place to be with the placing crawling with germs. Thankfully they rushed us back to a room that had just been cleaned an was away from most of the activity. The Dr. seemed so non-chalant and I was so frustrated I wanted to scream. Within 30 minutes his fever had gone from 99 to 102.3. He didn't want me to move away from him and I could feel him burning up. I could make this ordeal pages long with all the nightmares we endured. He was on the verge of passing out while he went through chest x-rays and it hit me on our way there and back - I hadn't been here since that awful night last year. This was the same steps we walked that night when we received the awful diagnosis. Being back was more overwhelming than ever. After more tests, I was begging someone to start antibiotics. We had been taught if you don't start antibiotics within an hour, they can go septic. Finally, I was able to breathe knowing his chest x-ray was clear and they began antibiotics while waiting for the blood work to come back and many other tests. I won't go into the nightmare of accessing his port in the ER. I was so touched when one of his nurses from the local clinic called the ER to check on him. Brayden was finally resting curled against me and I started to relax a little knowing he had medicine working and he was peaceful while we tried to figure everything out.

9 hours later, Brayden was finally moved to the floor. We were told they were scrambling and moving things around to 'find a place' for him. We were told a few times over the next several days there aren't many nurses or Pediatricians that are used to treating Pediatric Oncology patients. All this time, this year and a half of so many weekly appts and blood draws, port access, medicine, tests, and we were lulled into this false sense of seeing so many around us going through the same steps and realizing we weren't alone. This past week we've never felt more alone. We realized just how rare Brayden's condition is once again and how far away Children's really is...3 1/2 hrs is way too far when he wasn't stable and we were rushing to understand the fever and the 160 pulse rate. I was petrified and kept asking Bryan if we did the right thing. At one point, we considered leaving the ER and driving to Little Rock. But I know how long that drive really is and I couldn't imagine what in the world we would do if Brayden went through another episode like that. So we stayed in hopes he would get the care he needed. It wasn't until we got up to the floor I began to breathe. God had put a WONDERFUL charge nurse in our path. She was WONDERFUL and spent the next 3 hours with us. (If you're keeping track, that puts us at 2am). She cleaned up Brayden's port access that was a nightmare in the ER. She instantly was under Neutropenic precautions with gown, mask, gloves, and had the other nurses doing the same. I went to work cleaning the room with alcohol wipes while more blood was drawn. Brayden was a wreck. He had been through so much trauma. I've not seen him like that before. Even with all he endured during diagnosis, nothing like this. It was the first time I saw him exhausted and not a lot of fight in his eyes. He was really feeling and expressing how defeated he was. This awesome nurse was such a beacon to us during those horrific hours. She comforted both of us knowing she knew how to care for my sweet boy.

We again didn't rest more than 3-4 hrs. We saw a couple of different Dr.'s and knew the drill. Blood draws were done peripherally and through his port. They would be monitored for 72 hours for any kind of culture to grow. In the interim, Brayden's fever was starting back and he immediately began an on-going aggressive round of iv antibiotics that continued for the next 4 days.

The next day brought some friendly faces that lit up Brayden. Our sweet friends from my circle came to visit and lit us both up. One of them brought their son back up later that night to enjoy some fun DS time. The boys have hung out before and always have a great time playing together. His counts had shot up overnight and we took advantage of the brief window to visit with others. I was and am so thankful for each of you. My sister was there early that morning (after back to back hospital nights in 2 different places) with some sweet nectar again from Starbucks to keep me going through the long day. She was there in the ER and did an awesome job of distracting both me and Brayden. Thank you to my sweet friends for the ways you touched us and encouraged us either through smiles or gifts and things to help ease our unexpected hospital stay.

We learned quickly Brayden's liver enzymes were very elevated. Each day we learned of an update on his blood cultures that thankfully weren't growing anything. His fever hadn't returned through the night and the antibiotics continued. There were other worries & concerns but we were getting through it. Each Dr. we saw had a different idea for Brayden's reaction. Neutropenic-induced fever, infection, but it was our sweet nurse from Children's whose call really calmed me down. She was just sure it was a reaction from the Blood Transfusion. It was peculiar it didn't happen sooner, but even though he hadn't had it before, now we knew what to do for next time to prevent it again. We found out his liver enzymes have been elevated over the last several months. It's expected in his situation and Children's didn't alert us - it's just another thing that comes with the territory of the aggressive chemo. And when you're fighting for a cure, you keep going knowing 2 of the 3 chemo drugs he's on causes the liver enzymes to elevate. They were scary for a Pediatrician to see but reassuring this is what Children's is used to seeing and they weren't within the range to where they would have to stop chemo.

The next day Brayden's counts had plummeted again. He was VERY neutropenic. It was sad not to have any visitors, but we made the most of it. One of my sweet friends had brought him a new Lego set and we had a blast playing with it all that day. We watched movies and I loved getting to snuggle with him in his bed. Dad came when he could in between work and we missed Hershey like crazy. We played games and stared out the big window at the sunshine. Thankfully, we got good news. Brayden had been fever-free long enough to go home, his counts had rebounded a bit to be above the Neutropenic line just enough, and his blood cultures still hadn't grown anything. YEAH! We were thrilled to be going home. There were still some scary moments again with his care, but he was a trooper and we made it. I realized I had to stay on my guard the entire time and be his advocate. I'm so glad I was able to be that for him.

Coming home was wonderful. It was the first time either of us had slept in our own beds in 5 days. Hershey was precious getting to see us and knowing something had been up. It was right back to the grind the next day with Brayden returning to clinic. We were shocked his counts had come up again just enough to have chemo. We are so thankful in this year and a half Brayden hasn't had to skip chemo and his counts have stayed where they need them to. We're still worried, but that seems to be part of the process. The nurses at the local clinic were so precious to him and had worried with all that he'd endured the past week. 2 hospitals, a blood transfusion, an ER visit, fever, and a hospital admission. There were still some concerns, but all in all, he did okay. We have another visit to Children's coming and I think we'll all breathe a little easier. His nurse commented he just didn't look like Brayden. I've seen that too. He's been sleeping 14 hours a night. Today was the first time in days I saw glimpses of him back. I just hope and pray everything inside of his little body keeps fighting and holding on as the chemo works to keep the Leukemia at bay and destroy all memory of it.

Please join us in praying for Brayden. Now we're also worried about the liver function, so we're praying for protection for his liver as it works to filter out all the chemo that's being pushed through him. We pray his counts stay within the safe range - not too high where chemo dosage has to be increased, but not back into Neutropenic range. We pray also for his spirit to be encouraged. He's endured quite a lot over the last week and we pray his spirit to be guarded and his heart to be renewed. We pray also that whatever was causing these test results to be so crazy over the past few weeks that it is gone. We pray they settle back into a normal range and that the chemo continues working. We pray for Brayden's continued healing and stand on the promise that he's already been healed.

Hopefully we'll have some quieter days ahead. I have many pictures to post. We're hoping for a haircut in the next few days. It's been very tough to do. This will be the first haircut for Brayden since his hair grew back. It's so adorable and curly! The nurses loved complimenting him on it and he pretends to be annoyed! Hopefully we'll have some summer fun to focus on and be able to share with you. Thank you all for continuing to follow us on this journey. Thank you for your encouragement for me to keep writing and keep sharing with each you here. Thank you for your comments as that helps us to remember we're really not alone in this at all.