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Friday, July 25, 2008 7:14 PM CDT

Hi to everyone!
The summer has flown by and it's almost time for school again. Ben recently had his blood checked and all remains clear. We are now approaching the two year mark for being OT (October). If that check-up is OK, then Ben will go to clinic every four months. I can't believe he is approaching the 2 yr. mark already. Also, we realized that next month will be the 5th anniversary of his diagnosis. I'm always a bit anxious when August approaches because any bad news seems to arrive in August (my mom, grandma and grandfather all died in August-awful month). But Ben is in good health and eager to begin 1st grade in a few weeks. Remembering August 5 yrs. ago, it was so hard to imagine that we would be at this point. We are thankful for each and every day of good health our kids have and others who are still fighting the fight are never far from our thoughts. I did want to mention that Congress did pass the Conquer Childhood Cancer Act and it's currently awaiting the president's signature. Thanks to everyone who contacted your congressmen and senators. This gives doctors more funding and research in fighting this horrible disease!
As for our family, we're "plugging along". Ben is entering first grade and will play a team sport for the first time (soccer). He wants to start back taking Karate and he continues to make progress in therapy for his sensory issues. Lily is still in gymnastics (now twice a week) and will also get to play soccer with her big brother. She'll be starting pre-K. Jeff is busy as usual but is taking some days off to spend with the kids before school begins. As for me, still seeking direction on what I want to do. I like being a stay at home mom, but would like to do something during the hours that the kids are in school. I'll figure it out at some point. I do think that after Ben's October visit, I will discontinue this site and close the book on this part of our lives. I hope that anyone who encounters this site will realize how tough and brave these kids are. Take care, Lorie

Monday, October 15, 2007 11:57 AM CDT

Hi all!
Got past Ben's one year visit last week. Ben remains in remission!!! His WBC was a bit low from a respiratory infection, but everything else looked solid. Ben was excited to hear that he would not need another "poke" until January. Can't say that I blame him there. Not to say that I am totally at ease whenever he complains of pain, but I get less anxious as the months pass. Ben feels great and he continues to excel in school. We did find that he has auditory processing disorder after some testing done last month. I had always suspected there was something not quite right with Ben's ability to listen. Turns out my mommy tuition was right. We had him tested by an audiologist last month and he has a mild case of APD. We started speech therapy a few weeks ago to help him- I knew if we just left things they way they were, he woulod grow more frustrated with school. It seems to be going well- Ben likes the therapist and has fun with the therapy. I am so very proud of him! He had such a rough start to his life (dx. at 20 months), the fact that he is doing well is all his doing. He's a great, sweet kid.
Lily is also well- smart as a whip and loving school. She can actually write her name and loves building with Ben's magnetix. Have to say that we are enjoying the "normal" life, but I still think of those in the battle. Keeping all your kids in my prayers: Ashley, Alexia, Avalon, Sherilyn just to name a few still in the fight. Have a great fall! Lorie

Tuesday, September 11, 2007 1:05 PM CDT

A note for those who pray: please pray for the family of Noelle Naylor. This sweet little girl lost her battle with infant AML after three years. The family is devastated. This is why we fight for more funding from Congress. This loss is one too many, isn't it?
www.caringbridge.org/wi/noelle


Hi all!
I hope that you have had a chance to view the video above. I am so proud to be a part of this and to tell people that this is Childhood Cancer Awareness month. Looking at this video, it's hard to understand how priorities (tax dollars) have gotten so messed up. I've been busy contacting TN representatives as well as trying to get local news stations to do a story. We'll see...
As for Ben, it was another uneventful clinic visit. His counts are solid! Just wgat we like to hear. Next month will be a year since going OT and if counts continue to do well, he will only have to go every 3 months. Can't say that I am disappointed about that!
We're really busy- tomorrow is the eve of the High Holidays for us, so things are a bit hectic. I love this time of year- a time of reflection and renewal. Jeff and I will participate in service tomorrow night and I'll take Lily to services on Thursday for Rosh Hashannah.
We're also getting involved in Ben's school- they have a 5K run and fall festival coming up in a few weeks that we are going to participate in. He's loving kindergarten! His fine motor skills have improved, so he's not as frustrated and his reading ability has really blossomed. He's just so proud of himself- it's really great to see. Lily misses him at the AJCC but has adjusted to being there without him. She's so very bright and definately opinionated :-). We have our hands full here.
Hope that it's starting to cool off where you are! For those visiting who are Jewish- L'Shana Tova!

Monday, August 20, 2007 7:10 PM CDT

Hi all!
I have to confess that I was dreading Ben's August blood draw this month. His appointment was the day before his 4 yr. anniversary of his diagnosis. I try not to be superstitious, but it was hard not to be a little anxious. Well, all was well! His counts are strong still and no sign of leukemia :-). Always good news!! The next day, 4 years after being diagnosed with ALL, Ben started kindergarten. I still can't believe that we reached this point and that Ben got to start school as a "normal" kid. He is so proud to be in big kid school and has been excited about starting. He is in a small class (15 kids, teacher and aide) and I think it's a good fit for him. Lily is jealous- she feels like she is big enough to start big kid school. I told her that I wasn't quite ready for both of them to be in school yet. Hope that everyone is staying cool- it's been so unbearable here. Will update for the next few months (Sept. and Oct) and that may be it for me on this journal. October will be the year mark and we hope to be then going every three months for checks. We know how fortunate we are that Ben is doing so well- every day is now a bonus. Stay Cool!

Thursday, July 12, 2007 11:34 AM CDT

Well, I am updating before his monthly visit because Ben provided a bit of excitement last Thursday and I am only able to talk about it now. I got a call from the camp that Ben attends telling me that Ben was fine but that he had drowned. Needless to say, I was panicked and rushed to camp. When I got there, Ben was at the side of the pool being cared for by several firemen. He had been revived but was still pretty groggy. The ambulance arrived soon after and took him to Children's where we got visits from most everyone who had treated him. He was OK neurologically, but they kept him overnight to make sure that he didn't develop pneumonia or have an ashtma attack (his right lung was full of water). Luckily, he got through the night just fine and was released on Friday, feeling perfectly fine. Jeff and I, on the other hand, were nervous wrecks. It's only now that I can type this without shaking. From what we pieced together, Ben was pushed into the pool (according to him) by some older kids. When he went under, we think he panicked and swallowed a bunch of water. The lifeguard reacted quickly and we're fortunate that Ben has suffered no ill effects from this. As I type this, Ben is back at camp- something he really wanted to do. To say that I have been a nervous wreck is an understatement. But I am grateful that he is feeling good and this hasn't traumatized him. I have now told him that I would like to have a boring next five years. Hope that's the case!

Hi all!
Well, we're enjoying a brief respite from the heat. It's only getting up to 84 today. We'll take it! Jeff says it's the one thing he dislikes about living in the South. The kids are having a blast at camp- swimming is the big thing for both of them. Ben got to go on 2 field trips this week, so he's had "the best week ever" according to him. He's feeling great nowadays. His counts are solid and his ANC is well above 3000. To look at him, you would have no idea that he had ever been sick. He does like to show people his port scar and explain that he used to have a port. He's also gotten taller- he grew another 1/2 inch since June. I'm waiting a bit before buying his school uniforms because I want him to get some wear out of them. Speaking of school, Ben starts kindergarten in another month. It still boggles my mind that we are to this point, that he'll be starting school like any other healthy, normal kid. It's been such an abnormal 3 years. He had a greta time at the kindergarten readiness camp last month, so I am feeling less anxious about the change. He'll really miss his friends though. Hope that everyone continues to have a good summer and please keep those kids still fighting this disease in your thoughts and prayers!

Thursday, June 14, 2007 9:51 AM CDT

Hi all!
I can't believe it's already the middle of June. Time has really flown by. Ben had his clinic visit on Monday and his counts remain strong. I always feel a little queasy the day before a clinic visit, just nerves I guess. He's now 8 months OT and feeling great. He's still doing karate and he has been having a blast in summer camp. For the first time in a long time, he gets to go swimming with his friends. He still won't put his face under water, but he loves being able to do what his friends are doing. He even went on his first field trip last week. I didn't realize it was coming up, so I had made a few appointments. When I found out, I started to cancel them so I could go. Jeff talked me out of it- said at some point I had to let him be just like the other kids and not hover. OK, I confess, I started to go anyway when my appointments were done but I didn't. Needless to say, he had a blast. They took a bus over to the Children's Museum and had a picnic lunch afterwards. I realized how tough it still is for me not to hover. I know it'll get better the further out we get, still... We have 4 more months of monthly clinic visits, then Ben will go to every 3 month visits. That's good, since he will start kindergarten in a few months and going every 3 months will be a little less disruptive. The rest of us are doing well. Lily is also at camp and especially enjoys swimming. She's still in gymnastics and has almost gotten doing a handstand down. She's really proud of that. She wants to do karate too, but we'll wait on that. She's too cute- she'll watch what they do in Ben's class, then will come home and have her own class with me as student. Too funny! I'm busy with some home improvement projects and being a "taxi driver" for the kids. Jeff, of course, is busy with work but I hope he will take some time off soon. I'd love to take another trip, maybe to Asheville on a long weekend with him and the kids. We'll see. Hope that everyone is staying cool this summer! Keep those kids who are still fighting this awful disease in your prayers. Lorie

Wednesday, May 16, 2007 2:08 PM CDT

June 1st-
I just added some pics from Ben's off treatment party to his photo album. The new photo on this page is from Ben's karate graduation. He graduated from white belt to white with yellow stripe. He was really excited about showing his skills :-).

Hi all!
Another month, another good checkup
:-). Ben continues to do well, count-wise. He's recovered from his infection a few weeks ago because his counts were back to normal. They also ran a chem panel to check on his liver and that remains normal as well. There's always been the possibility that chemo did long term damage to Ben's organs, but none of that has been seen.
He's your typical rambuncious kid. He's enjoying karate and is looking forward to summer and "big kid camp". What that means is that he gets to move up to the older camp at the Jewish Community Center since he will be entering kindergarten this fall. They take field trips which Ben is really excited about. I am shedding a few tears because he's really about out of preschool. The AJCC has been so great in being a safe, fun place for him to grow and I know that he will miss it. Good news is that he's going to a really good school in the fall and one of his AJCC classmates will be with him. We are also having a cookout with some other families whose children will be at his school and the school is having a "kindergarten readiness camp" this summer. So hopefully, the transition will go fairly smooth in August. Lily will still be at the AJCC, so we won't be saying "good-bye" yet.
Just wanted to say thank you to everyone who was able to come to Ben's off treatment party- it was a blast! I hope to get some pictures from the party up soon. We also got to travel with Jeff to Denver last week. The kids and I had a great time seeing the sights while Jeff went to his first conference in three years! It's been a great spring :-). I hope that everyone who checks in is doing well and enjoying the weather. Lorie

Saturday, April 21, 2007 8:27 PM CDT

Hi all!
I actually updated earlier in the week, but it got erased and I was too tired to type it again :-). Ben had his clinic visit on Monday and counts continue to rise. His ANC was a nice 3948 and platelets were 271. He feels better and better as the months pass, not to mention he's a bit more willing to try new things. It's a thrill to see the growth and change! Ben also got his 5 yr. old immunizations done after getting the onc's OK. Jeff took him and said he did great. That was a relief- the reason I had Jeff take him was that I worried he would fight and I wouldn't be able to hold him. He weighes 50 lbs. now and strong. Things have gotten busy around here. Ben takes OT now for his fine motor delays and we've been told that the delays are pretty mild which is good news! I think that now that he's been OT for 6 months, the side effects from chemo are fading. We also signed him up for karate which he's been wanting to take. It's fun to watch him- he's so excited about it!
As for Lily, she's growing and she's definately a 3 yr. old. We call her the little diva now. She's got her daddy wrapped around her little finger ;-). She's still in gymnastics and loves it. She's one of the smallest in the class and willing to try anything the instructors ask. Jeff is taking off next week, so he can see her in her class.
Jeff and I are doing well- Jeff is busy as always, but I have convinced him to take off a few days in May for a break. Usually, you have to twist his arm to take time off, but not this time. I think he's a bit tired and could use the break. As for me, I've been spending time planning Ben's off treatment party which is a week from today and trying to find another job, one a bit more flexible than the medical field. No luck yet, but I'll keep trying! I have been looking for something that will be easy to adjust my schedule if Ben requires a doctor's visit. When I tried to work at the hospital, I was out more than I was there when Ben had problems with his asthma. I'd love to work in the adoption field, but no luck there yet.
Hope that everyone is enjoying the spring weather! Lorie

Thursday, March 22, 2007 1:38 PM CDT

Hi all!
It's that time of month again-UPDATE! Ben continues to do well, despite having a dip in counts. It's nothing to be alarmed about- he has had a respiratory infection which drops his counts. The end of last week had us at the pediatrician's office to check him out. He started coughing hard Thursday and by that night, he was running a temp. For the first time in a long while, I took him to the pediatrician's office for an illness. The onc clinic was packed, so they referred me there. No worries because Dr. Blevins was thorough as always! They checked Ben for strep, flu and pnemonia- all were negative, thank God :-). His counts (WBC, ANC) were down a bit, but his platelets were holding steady. Ben was pretty confined this past weekend but he didn't seem to mind, feeling pretty blah. We had his monthly onc appt. on Monday and although his ANC dropped a bit more, his WBC was rebounding and his other counts went up. Nice relief to know that it was just another infection and that his body was fighting it nicely. His onc is pleased with his progress and did not even want us to follow up sooner than a month to recheck counts (another thing that has taken getting used to!). Next month, he will hit the 6 month mark and will begin getting his 5 yr. immunizations done for kindergarten as well as redoing his HepB series. Can't say that I am completely thrilled about redoing the Hep series, since this will involve 3 shots. Unfortunately, the chemo negated his early shots and he has no immunity, so it's a do-over. I have told Jeff that he will have to come for the first round to help. Ben will lose it, seeing the needles. He's a big kid and really hard to hold. Ugh! A bit of good news is that Ben got his cast removed on Friday- he's a free kid! I don't think he first knew what to think and his poor little arm was so skinny :-(. He's now been scheduled for some therapy to help with fine motor skills. He keeps improving every day, so I don't think he will require alot of help with this. We continue to be grateful for his recovery from treatment and that so far, there seem to be few mild temporary effects. We just hope that his transition into school in the fall will be smooth. We have been really looking at alot of schools, finding one that will be the best fit. We hope to finally make a decision next week on that. Never knew that finding the right kindergarten could be so stressful! Of course, kindergarten is alot different than what I remember ;-). Enough on that later. I'm still a bit tired because last night was the first night we all slept through the night since last Thursday. Right after Ben, Lily caught the same respiratory illness. Our house has been sounding like a TB ward and their coughs wake everyone up. I can say without a doubt that I am one of those people who do not function well with a limited amount of sleep. So right now, I'm pretty crabby and just long for the weekend to get here so Jeff will be here to help out. At least the weather has gotten nice and warm! Oh well, I'll sign off for now. Thanks for checking in and keep those still fighting this disease in your thoughts and prayers.
Lorie

Friday, February 23, 2007 8:32 PM CST

Hi all!
Well, here it is, the end of another week. Ben had his monthly appointment on Monday, but it's taken me until now to update. Well, tht's good, right? Right! His counts look good and strong. His WBC count was a little below normal but not unexpected since he was getting over a viral infection. We found out he had another respiratory infection, but it was so mild, we didn't realize it. Of course, it aggravated his asthma so we started his Qvar (steroid) back. The funny thing is that the asthma exacerbation was caught in a follow-up visit to the pulmonologist last week. Ben hadn't even been coughing (a usual sign) but when they tested him, they found a tightness in his chest. So, back to the steroid spray we go with a follow-up visit next month. I joked to Jeff that it seemed like we couldn't get away from multiple doctor visits despite Ben being off chemo. We also had the follow-up visit to the orthopedist for his arm. That's also going well and his arm is showing signs of healing nicely (despite Ben's continued "bouncing off anything" and "rolling around"). He's now in a half cast, so he's able to do a bit more independently (get dressed,etc). We're keeping fingers crossed that the cast will come off in a few weeks. We're looking into some OT for him once the cast comes off just to help him catch up. It's been a real roller coaster! I just continue to be grateful that he is doing well OT. On the home front, we have been really busy. We're finally "getting out there" in terms of activities. Lily just moved up to the preschool class in gymnastics and both she and Ben are doing a "Music in Motion" class at preschool. Ben is excited about trying a new sport and he would like to try karate and baseball. Well, we have to wait until the cast comes off first :-). Guess our days are about to get alot busier? Can't say I mind it! Hope that everyone is well and I'll keep updating.

Thursday, January 25, 2007 11:18 AM CST

Hi all!
Hope that everyone is doing well. Ben continues to recover from chemotherapy and his counts are rising. Tuesday, his ANC was up again to 3800 and the other counts were normal including liver function. We hold our breath each month hoping that Ben remains in remission and so far, so good. Of course, we're only a few months off (:-)). Ben knows how to keep things exciting though. Sunday, he broke his arm after jumping off our storage bins. Poor kid was so shocked that he didn't give me much fight going to the ER. Luckily, the break was not too bad and they just had to put a cast on it (the cast color is red in honor of Lightening McQueen from the movie "Cars"). Whew! He had a rough few nights getting some sleep, but did great last night (thank God! I was really feeling sleep deprivation). We've had to put a few things off- Ben wanted to start karate but will have to wait a bit for that. We're also looking at OT once the cast comes off. We have found that Ben has some delays with his fine motor skills (writing) and with the cast weakening his arm, he'll need some help. We knew there were some areas that Ben was slightly delayed on, but we have a good support team at Children's and Ben's preschool to help. Sometimes I get angry at what leukemia has taken away from Ben, but when I read that another child has lost his/her fight with cancer, I know that we are so fortunate that Ben is still here with us. We can deal with the small stuff :-). Thanks for checking in!

Monday, December 18, 2006 12:34 AM CST

Hi all!
Hope that everyone is having a great holiday season! We have had a hectic time lately. We celebrated Ben's birthday (#5) last week. The kids then had several other birthday parties to attend and Hanukkah is now upon us, so there have been activities at our temple as well. Whew! And if you noticed the new picture, you'll see that we celebrated Ben going off treatment today! Ben had his usual clinic appointment today and we got a chance to celebrate being off treatment with clinic staff. Ben's counts continue to look good- his ANC is 2725, climbing from 1500 last month. We also discovered that Ben has grown another inch since last month as well :-0. At this rate, he may be taller than me before he leaves elementary school :-). Anyway, the staff gives a little gift to the OT child and provides cake which is really nice. The staff came and cheered when Ben got his OT medal. We also appreciated having our friend, Joan there as well as our rabbi celebrating with us. I know that the grandparents really wanted to be here, but could not. As for Ben, he's feeling really good and having a great time at school. We've got the asthma under control as well, which considering the respiratory stuff around, that's excellent! We're really enjoying the holidays and truly appreciating the fact that Ben is chemo-free. Hope that everyone has a great holiday and stay safe!

Wednesday, November 22, 2006 12:40 AM CST

Happy Thanksgiving!!!!
I hope that everyone is doing well. Several things have happened since I last posted. Ben got his port removed!!!! We saw the surgeon for a consultation the first part of November and he scheduled Ben quickly (mainly because Ben was feeling good with no respiratory issues). The removal was uneventful but Ben struggled coming out of the anesthesia. He was combative and delirious and it took another drug to get him to come out of it. Of course, being a true "Hirsh", once he was lucid, he told us he was hungry :-). We ended up taking him to one of his favorite places (IHOP) for waffles. Pain-wise, he did amazingly well not requiring any medicine for it. Of course, trying to "keep him quiet" was downright impossible, but his incision managed to heal anyway. He was good to go for ORLANDO! That's right, we decided to celebrate his going off chemo with a trip to Florida, Disney World and stay at the Nickelodeon Hotel (something he has really been wanting to do). We all had a blast and Ben did things on this trip he'd never done (ride on rides, go swimming and ride on water slides). Watching him, I couldn't help but cry a bit. He lost out on so much over the last few years, it was awesome watching him enjoying new experiences. This was not a "Make a Wish" trip, although he is eligible to have one of those. We decided to wait a bit longer and let him decide what his "wish" is (although I suspect we'd end up in Orlando again-what an amazing place!). He's doing so well and seems to feel much better being off the chemo. We went to clinic on Monday. His counts are steadily rising and they tested his liver functions which remain normal. Although I still can't totally relax, I do feel thankful for everything. For the first time in a long time, I am not totally consumed by dealing with his meds, blood counts, worrying about what he has been exposed to. It's a weird feeling and I'm now looking at what's next for me to focus on (working, volunteer, etc). I am thankful for so many things this Thanksgiving: the hard working staff and MD's at Ben' clinic, family, friends- but most of all, thankful that both of my children are healthy. We will never go back to how it was before Ben got sick, but I can handle this new reality just fine because I have my son here with me, happy and healthy. I hope that everyone has a safe and happy Thanksgiving and thanks for the support and the many prayers we have received over the last three years. And for those still fighting this awful disease, please know that my thoughts and prayere remain with you all. Love, Lorie

Thursday, October 19, 2006 4:07 PM CDT

Well, today was the big day! Jeff took the day off and went with us to clinic. We didn't hear wheezing last night, so we were hopeful that Ben would be cleared to get his spinal tap and bone marrow aspiration done today. Even though Ben has been off chemo since last Thursday, it didn't seem "official" until we heard that both SP and BMA were clear. Well, we heard those words today! Dr. Casteneda looked at the BM and spinal fluid and told us Ben was clear. The pathologist still has to look at the slides, but we trust Ben's oncologist on this. Ben also had a diagnostic echo today too which looked good. It has to be read by the cardiologist but Jeff thought Ben's heart looked fine. Such a relief! I told Jeff it felt like a huge weight had been lifted from my shoulders. Now, it's meeting with the surgeon to discuss the port removal which will happen in a week and a half. We've been told that recovery from surgery will be pretty short, so we may still have it done before going to Disney World next month. We now have a udifferent issue. Ben's wheezing was apparently due to asthma! I took Ben to clinic on Monday because he was still wheezing. Ben's onc had a pulmonologist come listen to Ben and we discovered the asthma. Good news is that is he only wheezes when he has a respiratory infection. We've gotten it under control and will follow up with his new MD in a few weeks. Yes, we are adding doctors to our list, not subtracting! Oh well....Ben is healthy and that's what counts. We can handle a little asthma :-). Anyway, thanks for checking in. Gotta get dinner going for everyone. Lorie

Saturday, October 14, 2006 1:45 PM CDT

Well, the day finally arrived! Ben is off treatment!!! He took his last dose of mercaptapurine and methotrexate on Thursday night. It's hard to believe that this day has finally arrived. I spent the last 3 years just making it through that day, never looking forward to imagining Ben being done. I guess I'm still kinda numb but relieved! Ben did not get his diagnostic SP or BMA done Thursday since he was wheezing (trying to get over a nsaty respiratory infection). We started him back on nebulizer treatments and will try again this coming Thursday to do the testing. So what now? Well, he will get his SP,BMA and echo done this Thursday as part of the study he has been on. He will also continue to get his antibiotic for a few more months by breathing treatment. The next big step will be having his port removed. We have thought about getting this done at the end of this month, once we know his SP and BMA have come back clear. Then it is checking in once a month for blood work for the first year. From what we have been told, if a child is going to relapse, it's likely to happen in the first year off treatment. If Ben remains clear, our visits to clinic after the first year will become less frequent. As for Ben, despite the cough, he feels well. We celebrated going off chemo by participating in "Light the Night" walk and had a little chemo disposal ceremony when we got home. I'll post the pictures soon. I don't think Ben really understands what going OT means-chemo, clinic visits, etc. have been his reality for as long as he can remember. It's been "normal" for him. I don't think he'll remember much about the past three years and that alone is a big relief for us. I don't want him to. I just want him to feel that he is like everyone else. Thanks to everyone for the support that we have received during this "long haul" and the donations we received for "Light the Night". I'll probably only post a few more times, but hope that whoever comes across this site (parents whose kids are going down the same path) can find comfort in Ben's story. Know that he is doing well and whatever comes in the future, we are grateful that he is with us now. Take care!

Saturday, September 30, 2006 8:42 PM CDT

Hi to everyone!
Well, we celebrated another "last dose"- Ben is now done with his steroids!!!! Yep, we did the "Happy Dance" last night when he took it. I have it on video tape as well. :-)
I have to say that this is the drug I am happiest to be done with. The steroids had the worst effect on him, turning him into Mr. Hyde. We now have 13 days to go!!! Please keep Ben in your thoughts and prayers over the next few weeks. Thanks for checking in with us!

Saturday, September 23, 2006 9:25 PM CDT

Hi everyone!
Well, we reached a milestone on Thursday. Ben received his last Vincristine dose on Thursday. He took it like a champ. He doesn't flinch anymore when getting accessed- he was kidding with the Child Life person and enjoying the attention. He got his antibiotic through the breathing treatment, so the visit was a fairly short time. The longest amount of time was talking to Dr. Casteneda about the plan. Ben is now scheduled for his final spinal tap and bone marrow aspiration on October 12th. It's feeling surreal, which I am sure sounds odd. I guess it's because I have spent the last 3 years not looking towards being done. We've been living day to day with all this, so the fact that Ben is close to being done has not quite sunk in. We're excited to be getting done with the steroids, I can definately say that :-). However, the steroids are on hold due to Ben developing another sinus infection. Thursday he complained of having a headache-he woke up Friday with the left side of his face swollen. Poor kid! We've started antibiotics again and will check in with clinic next week to get the OK to start his last round. I confess that we will probably be doing a "Happy Dance" when he finishes the steroids. Whew! Please keep Ben in your prayers as he finishes up. He has been such a trooper throughout all this and hopefully, alot of this treatment will be a very faint memory. We're hopeful that this is it for him, but we know there are absolutely no guarantees. I think we'll always be looking at every ache and pain with a nervous twinge. Our lives changed on August 15, 2003 and we'll never have a "normal" life again. I only hope that Ben grows up healthy and happy. I wanted to thank so many of you who have donated to our local "Light the Night" fundraiser. We exceeded our goal and feel so lucky to have so many who care about our family. Thank you!!!!! For anyone who has not had a chance to donate, the website is
www.active.com/donate/ltnNashvi/1791_bensmom We'll be participating on October 12th. Thanks again to everyone-the support we have received kept us going many times over the past 3 years.

Thursday, August 24, 2006 8:10 PM CDT

Hi to all!
Hope everyone is keeping cool :-). It's been sooo hot here, but that hasn't slowed the kids down any. Both have started preschool and having a great time. Ben is now in pre-K, preparing for kindergarten next year. As worried as we've been about possible cognitive effects, he seems to be doing pretty well. He's writing his name and other words and has started to "sound out" words, so I think he's pretty close to reading. I have asked his pre-K teachers to let me know if they see any deficits, but so far, so good. Ben also had his last LP with methotrexate today! Yes, today was clinic day and emotions (at least for me) were running high. I didn't sleep so well worrying about today. August 24th is always a difficult day for me anyway (Mom's death), so having Ben's LP on this day was a bit unsettling. But according to Dr. Casteneda, his spinal fluid looked crystal clear. She'll call if anything shows up from the pathologist review. Another thing that is hard to believe is that Ben only has 2 more rounds of steroids :-) (this week and September). I think we'll be counting those off. He'll go to clinic next month for his last Vincristine, then we'll make a date for his diagnostic LP and BMA in October. It's a bit surreal to think we are actually this close to finishing this protocol. For so long, I didn't let myself think about it, because the course of treatment was so long. I am too nervous to be excited, almost afraid I'll put some kind of curse on this. Please continue to keep Ben in your prayers! Lorie

Saturday, July 29, 2006 9:57 PM CDT

Hi all!
Didn't get a chance to update on Thursday (clinic day) because we've been so busy. Grandma Hirsh came to town that same day and we've been "out and about" the last few days. The kids are having a blast with Grandma and I get a bit of a break since she is really good at entertaining them. On to Ben....I can't remember if I mentioned it, but Ben had his adenoids removed last Friday (after months of various sinus infections that antibiotics didn't get rid of). Ben tolerated it well- had some ear pain, mainly after his nap and when he would wake up (had some drainage post-op). We're hoping that this will cure him of sinus infections-it was making him pretty miserable :-(. He was kept off chemo for a few weeks prior because of low counts (ANC fluctuated between 150 and 500 before rising to 750 day before the surgery). He wasn't happy about missing camp either, but we had to keep him out because of the possibility of catching another infection that could make him really sick. By the time he went to clinic on Thursday (week after last blood draw), his counts had rebounded well (ANC=3000 , WBC 4.6). He's back on chemotherapy and plans are to return to clinic next month when he's due for his very last LP with methotrexate!!! He'll also be starting pre-K which sometimes I can't believe. When we were told that treatment would last for 39 months, I found it hard to imagine this point, being about 2 1/2 months away from finishing (knock on wood :-)). It seemed to be so far away. I hope that everyone who visits will continue to keep Ben in your prayers as we approach October. Have a good rest of the summer and check back around August 24th which is the next clinic visit. BTW- some news for me- I am going back to work part-time! I'll be back in the medical setting :-) as a social worker at UT Hospital where Jeff works. Guess I just can't stay away from the medical setting, can I? I am really excited about it and look forward to being back on the job. I'll start in mid-August, same time the kids will be in preschool. Wish me luck! Lorie

Thursday, June 29, 2006 11:57 AM CDT

Well, it's now 3 and a half months to go until Ben is scheduled to finish treatment (knock on wood). He had a clinic visit today and did well with taking his antibiotic by nebulizer. Lily kept herself occupied by drawing with the Child Life person, Anna (they are a godsend to parents!). Ben's ANC is strong at 2300, platelets are 275 and all other counts look normal. I think I have been holding my breath with every visit especially in the last few months, thinking that he might relapse. I actually asked Dr. Casteneda about the possibility of relapse. She acknowledged that the possibility is always there, but that Ben had "strong clinical indicators" to suggest that he would be in the 85% that remain in remission. When Ben finished the first month (induction), he was classified as low risk since he responded rapidly to treatment and had no "bad" chromosomal abnomalities. I cling to that hope and pray that we don't have to put him through much more chemo. He's getting to the point that he tells us he doesn't want to take any more "yucky" medicine or have any more sticks or spinal taps. Who could blame him? It's a miserable experience. We just keep plugging along here and figure it's better to just take it day by day. As for "normal" life, we have been doing OK. Ben and Lily still have sinus drainage and Ben is scheduled to have his adenoids removed sometime next month. He just keeps getting sinus infections so we've decided to get them out. Dr. Casteneda is working with the ENT surgeon to determine an optimum time to get it done. Hopefully soon since Ben still has drainage and a cough. He's wheezing a bit too, so we have to restart breathing treatments again to help with that. They call it Reactive Airway Disease (not quite asthma) and tell me that he will probably outgrow it later on. Poor kid- we just keep adding medicines, not taking them away! Lily is doing great- she's enjoying camp (goes swimming) and I take her to a gymnastics class once a week which she adores. Both are growing so fast! All in all, despite the leukemia, etc, we really are blessed. Weird to say maybe, but true. BTW, hope that people got a chance to see the PBS show "Lion in the House" about childhood cancer. An amazing, unflinching documentary about some of the most amazing kids you will ever meet! Take care and hope that everyone is having a great summer :-). Lorie

Thursday, June 1, 2006 11:39 AM CDT

Hi everyone! It's that time again- Ben had his next to last spinal tap with methotrexate done today. Poor kid was so tired from last night (coughing), but he showed us what a tough little guy he is. It was pretty smooth. His counts bounced back nicely (3800-ANC, platelets 372) so his methotrexate was adjusted again, back to full strength. His SP looked clear according to Dr. Casteneda, but of course, it will be tested. And even better news, he took the pentamadine through a breathing treatment instead of IV! Jeff went with him (has to be given in a negative pressure room) and said Ben didn't like the taste, but cooperated. That means that we can plan on having the port removed when treatment is completed. And the end of treatment (provided he stays in remission) will be October 13th! That's right- as long as he stays in remission, we will be done in about 4 months. Unbelievable! Hope that everyone is enjoying their summer- thanks for keeping Ben in your prayers :-). Lorie

Saturday, May 6, 2006 9:38 PM CDT

Hi all!
Well, we are now down to 5 more months if all continues to go well. Ben had his monthly visit on Thursday and his counts are holding well. He's almost back to full strength on his home meds (they were cut back some after his episode with RSV in Feb dropped his counts). We were a little worried about his counts since he has had a persistent cough the last few weeks. However, the cough seems to be due to allergies, not any infections which is good news. We also talked about changing the method in how he gets his monthly antibiotic. He currently gets his pentamadine through IV, but is possible to get also through a breathing treatment/nebulizer. The benefit of this would be less time at clinic (takes 10 minutes) so we'd be in and out much quicker. Another possible benefit would be removal of his port earlier than anticipated. Currently, the plan has been that if Ben remains in remission, he will finish chemo in October and get a few additional months of the antibiotic. If he is able to do the breathing treatments, there will be no reason to keep the port in until December. We kinda like that idea! Trying not to get too excited because Ben may not be willing to cooperate with doing the nebulizer, although he has done OK with the home one. We'll see I guess. We're due back in clinic on June 1st and it's spinal tap time again. The good news is that will be the last LP for treatment. His final LP (along with bone marrow draw) will be in October once treatment is complete. It's hard to believe that we are even talking about this-ALL and treatment has been such a huge part of our lives for almost three years. Could we really be looking at being done? Hard to wrap my mind around it! Continue to keep Ben in your thoughts and prayers!

Thursday, April 6, 2006 9:55 PM CDT

Hello to everyone!
Hope that you all are getting this beautiful spring weather! It's been really nice here and we have taken full advantage here. We've been outside every day for the last week. The kids are doing well. Ben had another fever last week-turned out he had a virus. His counts have rebounded nicely. Today was his monthly clinic vist-ANC was 3000+, WBC 5.7, Platelets over 300. Nice to see those numbers, that's for sure! It's getting more difficult to get him to clinic. He hates it because he knows they will have to stick his finger for blood counts. I can't remember if I had mentioned this before, but he has a small clot in his port (fibrous sheath) that allows meds to go in but closes off the line when you try to draw blood. They have tried to break it up without success so now we have finger sticks. The good news is that his port still works enough to get meds (most important). We now have 6 more months/tx to go. You'd think it would be easier, right? NO. I get more and more nervous as we get closer. Big fear of relapse for me. The thought that we would be so close and have to start over the meds is really tough to think about. I can't stand the thought of continuing to give him this poison. His MD remains confident that Ben will continue to do well, but I'm his mom- of course I will still worry myself sick! Oh well...will try to keep this updated over the next six months. Please continue to keep Ben in your thoughts and prayers as we get through the next 6 months.

Monday, March 6, 2006 9:10 PM CST

Hi to everyone! Well, it looks like spring is right around the corner and I don't think there's anyone happier about that than Ben. He is close to returning to school although we did have to delay the return until Friday. The reason for this is that Ben came down with RSV on Wednesday. OK, where he got it, we have no clue since he goes very few places. Let's just say that it gave us a bit of a scare. Wednesday afternoon, he started running a temp of 104 but no other symptoms (no cough, sneezing, vomiting, etc). Well, of course, our first thought was that Ben could've possibly relapsed. They did blood work Thursday (cultures to see if he had a line infection or other bacterial infections). His counts were low- his ANC was around 200 (usually over 1000) and WBC count was very low. His counts were the lowest they had been in a long while. Anytime he has been sick, his counts had gone up. So, our anxiety was a bit "elevated" to say the least. He got IV Rocephin and we were told to return to clinic the next day. His port stayed accessed just in case he needed more labs drawn and needed more antibioitcs. We went home-he continued to run a fever, felt pretty lousy and had little appetite. We returned to clinic Friday for more blood work, hoping they could find something to tell us why his counts were low. Well, when the results came back, his counts were LOWER. OK, my anxiety was out the roof and it was really hard to keep from bursting into tears. His blood work was not showing any infection and I was sick to my stomach thinking the Leukemia had returned. The one bright spot was that his neutrophils (fighting white cells) were still good. Depsite the fact that his oncologist still didn't think he had relapsed, I couldn't imagine what else it could be. They ran a culture for flu and RSV by sticking a thin tube up his nose. Needless to say, Ben didn' enjoy that! Well, it came back negative for flu and Dr. Casteneda let us go home after more antibiotics. I have to say that I was relieved that he wasn't admitted since Jeff was supposed to be on call this past weekend and I would've had to find someone to take care of Lily while I stayed with Ben. We got home and after their babysitter came, I drove around in the car just sobbing. I was furious and just basically scared to death that we were about to "start over" treatment again. Then, good news from his doctor. She called to say that Ben, although showing no respiratory symptoms, had RSV. Can you say how bizarre that we would be thankful that it was RSV? Well, we were! RSV was the reason his counts dropped so low. He was afebrile by yesterday and when we checked counts again, his ANC was up to 340 (from 90 on Friday) and WBC was up to 2.15 (from .50 on Friday). So, he's back on the mend although still neutropenic. He's off chemo meds until Thursday when he is due for monthly vincristine and also a spinal tap. If his counts are still a bit low, we'll delay the chemo and LP for a few days. Oh well! We're just relieved that he's on the mend and that he's obviously feeling better. He's been a trooper over the past 5 days and constantly amazes me with how he handles all this. We're so lucky to have him! Take care all!

Monday, January 2, 2006 9:35 PM CST

Hi and Happy New Year to all! Hope that everyone had a safe and happy holiday season. We had a wonderful time, so good that Ben didn't want it to end. He woke up today, insisting that we had another day of Hanukkah to celebrate. We got to have a fun 4th b-day party at a place called "Pump It Up" full of inflatable slides,etc early in December. His birthday was actually on the 16th, but he started steroids again on the 15th along with having his quarterly spinal tap done. We didn't think he would be in a "party" spirit after that :-). He had a great time with his preschool friends and little sister Lily kept right up with them. His counts remain good- in fact, he is now up to full strength on all medications! At last visit, his ANC was 1500 and platelets hold steady at around 300. Dr. Casteneda remains confident that Ben will continue to do well and we look to October of this year to end medicines (if he stays in remission). Honestly, it's so unbelievable that we are even talking about being "off treatment". To me, it seemed like an impossible concept. I confess that I do get nervous thinking about it, only because I'm afraid to get too excited. It almost feels like being optimistic would somehow "curse" things. Anyway, we are counting down the winter months until Ben can return to preschool. At his doctor's request, we pulled him out for flu season. He's missing it badly, but we're hoping his preschool teacher can come visit and we plan on returning him back in March. I think we will also plan on summer camp again.
Please keep Ben in your prayers that he will continue to stay in remission! Take care everyone!

Saturday, August 6, 2005 10:00 PM CDT

Boy, I have not been keeping this up to date very well! Sorry to those checking in, but life has been pretty hectic this summer. We recently moved into a new house which has kept me pretty busy. Add two very active kids and I don't have much time on my hands! Ben continues to do well. He had a spinal tap last month that came back clear and his last visit (last week) showed good blood counts and a strong ANC. Poor kid is fighting a sinus infection right now, but otherwise is doing fine. He and Lily will start preschool next week. Ben wants to get back-he had a blast at summer camp and is ready to see his friends again. He's being a great big brother to Lily and they give each other hugs and kisses. We're truly fortunate that Lily's transition has been relatively smooth and that Ben has been accepting. I also wanted to mention that we are approaching the 2 year mark of Ben's treatment. Can you believe that he has been in treatment for that long? His doctor is starting to talk about the end of treatment next year and I have to admit it feels strange to hear those words. I can't imagine that we are actually approaching that time. Ben has been such a good little patient, rarely gives us a hard time about medicines, etc. He even raises his shirt for the nurses to access his port! I know alot can happen between now and next year, but I remain convinced that we are approaching the "home stretch". Hope everyone is enjoying summer! Lorie

Friday, April 8, 2005 9:13 PM CDT

Hi all!
Well, it's springtime here and we're getting to enjoy warm weather. Both Ben and Lily have been having a great time, playing at our local park. And finally, Ben is ready to return to preschool! That's right- we got the OK from his doctor to return. He's excited about that and wants to know where his lunchbox is so he can be ready :-). He had his appointment yesterday and we thought he could start back today. Well, it didn't quite work out. For some reason, it was missed that Ben was due for his quarterly LP. So, when we got to clinic yesterday, Ben had already had something to eat and drink :-(. We ended up coming back today for the LP, but luckily Jeff was able to be there to help. I needed it since I had Lily with me and Ben struggles with being sedated. However, everything looked fine and his counts were amazing. His ANC is over 4000 and WBC back to normal. Since his ANC was so high, his meds have been adjusted again. That's certainly great news to us. His dosages are now almost equal to the doses they usually give (he's been on much lower doses for a while since raising them before had dropped his counts). He was not happy with back to back visits to clinic, but was quite the trooper. He's on steroids this week, so we're seeing some "steroid moments" but it's OK so far. He and Lily are still getting along, though I do see some "jealous" moments for the both of them. It's been so much fun seeing them bond. Lily adores her older brother and Ben loves to make her laugh. So, we're still just "moving along" here. Sorry this is short, but I'm pretty tired and think that pretty soon I won't be making alot of sense :-). Take care!

Sunday, March 27, 2005 10:04 PM CST

Alot has happened since my last journal entry! The trip to Lily has come and gone. She has now been home about two and a half weeks and doing really well. Ben is being a good big brother (with a few slips here and there :-)). He didn't know what to think at first, but has rebounded nicely. I don't think he likes sharing my attention but he's got a big heart and I think he will be Lily's protector as they get older. We had family visits and Ben did have a clinic visit in there too. I wasn't there, but Jeff reports that Dr. Casteneda continues to be pleased with his progress. She also thinks we should wait and have him tested later since she doesn't think he has any cognitive deficits :-). He's really wanting to start preschool again, but we have to now wait until his next visit in early April. Apparently, there had been an increase in respiratory illnesses in recent weeks, so his doctor thought it best we wait. I do think we will see about a summer camp program for him since he did have to miss so much school this year. Poor kid, he misses seeing other kids! Thanks for checking in with us and keeping Ben in your prayers. He's a joy to us and we feel so fortunate that he continues to thrive despite continued chemotherapy. Lorie

Monday, February 7, 2005 9:27 PM CST

Hi all!
I meant to add a journal entry this weekend, but there never seemed to be a good time! It's been a little hectic here. Ben went to clinic Friday for his monthly treatment and to start his 5 day steroid treatment. His counts are holding steady (Yay!!), so we won't have to go back to clinic for another month :-). His ANC was 1360, platelets are continuing to stay over 350, and all other bloodwork remains "normal". Not bad, huh? We're thrilled to say the least! He is truly an amazing kid. He still hates getting his port accessed, but automatically forgets it when I get him down afterwards. He's getting harder to hold still too. He weighs 42 lbs and is about 42 inches :-). Whew! He had a somewhat tough weekend. The steroids really kicked in yesterday and he's been "Marty Moodswings" ever since (Jeff's new nickname for him). Well, at least, he only has tomorrow to go then finished for the month. He will hopefully start back to preschool at the beginning of March. We thought since flu season had been so mild that maybe he could start back earlier. Well, kids here started coming down with the flu this past week! They closed some schools here, hoping to limit the amount of kids getting sick. So, we'll wait until March! He's feeling pretty rambuncious here and we have a control issue going on with potty training (he will go on the potty for his babysitter but not for us). I have a feeling that it will be a slow process for him, but as Jeff says, "no one starts high school in diapers". We really don't push it, only because I suspect it will make him even more stubborn (can't imagine where he gets this stubborn streak from ;-)). I kinda hope that Phyllis will get him potty trained while I'm in China! BTW, I leave for China February 24th!!!! We are too excited for words and I am thankful that Phyllis is coming to help Jeff out while I'm gone. Please check up on us- I'll post pictures from China on Lily's website (travel page). Thanks for stopping by! Lorie

Friday, January 7, 2005 4:07 PM CST

Hi everyone! I hope that you all had a safe and wonderful holiday season :-). We enjoyed ourselves as well. Ben is feeling good. I have been taking him places (that aren't crowded, of course) so that we both get out of the house. He really misses preschool, though. I take him to a monthly "Tot Shabbot" at our temple which usually has four other kids. I'm also going to set up some playdates for him now that the holidays are over. We are hopeful though that flu season will be pretty mild and that he can get back to preschool soon. He had a great time with Hanukkah and his birthday, as I mentioned in our last post. He also got a few gifts for Christmas from my family. He must have thought that we were celebrating his birthday all month long :-). Well, today was his monthly clinic visit. He had his spinal tap done along with his vincristine and pentamadine. I have to say that he had the doctors and nurses laughing. When he woke up from anesthesia and still groggy, the first thing he asked for was "french fries". Not much can stop him from eating these days! His spinal fluid looks clear and his counts have really bounced back (ANC=4043, WBC=10.43-normal!!). Dr. Casteneda is going to adjust his meds since he has grown (again!) and his counts are doing well. We certainly continue to get good news where Ben's illness is concerned. Dr. Casteneda even corrected Jeff: when Jeff said something about Ben having leukemia, she said empahtically, "he HAD leukemia- he doesn't now". Jeff and I both teared up some. It feels great to have really positive reinforcement from Ben's MD. And now that Ben is no longer on heavy meds, he is growing quickly :-). So, all good news today from us. As to our update on Lily, we are waiting for travel approval from China and an appointment for the US consulate before I will have travel dates. I really wish I could go now, but both governments are not cooperating! Oh well, hopefully we will hear something in the next week. Take care everyone!

Friday, December 10, 2004 9:23 PM CST

Hi to everyone and Happy Hanukkah! Ben is having a great time with Hanukkah. Of course, he has caught on quickly that we light the candles, say the prayer then he gets gifts :-). And now, we have his birthday tomorrow where he gets more gifts! He's really having a good week :-). Although his birthday is the 16th, we decided to have his party the weekend before (his birthday is next Thursday). We have invited several boys from his preschool class to celebrate with him. I think Ben will have a blast, since he hasn't gotten to see any of them since mid-November. On the medical front, he continues to do well. In fact, his counts have rebounded so well that we don't have to return to clinic for four weeks! It'll feel a little strange, not going every couple of weeks, but I think Ben won't mind
;-). His ANC is 1743! and platelets are holding steady at 323. He seems like he feels great and he's pretty active! He really misses preschool so I hope to get him a few playdates after the holidays are done. Now on to another good piece of news: referrals have been sent from China and we expect that we will see Lily's face next week! We feel that we are so blessed this holiday season :-). We hope that everyone has a safe and happy holiday! Check out Lily's website in about a week and you'll hopefully see her referral picture :-) (link is below). Thanks!

Tuesday, November 23, 2004 6:10 AM CST

Hello to everyone and Happy Thanksgiving! This month has gone by quickly. Ben is growing and thriving. He's now 39 lbs and 40 inches. He's feeling good and still responding well to treatment! We did stop preschool for the time being since flu season has begun (a precaution suggested by his MD). He really misses it, so after the holidays, I hope to get him together with some of his prschool classmates to play. He also has his 3rd b-day coming up next month :-). We get to have a party with kids this year, but we're still keeping it small. He's actually asked several times if he gets to have cake :-) and sings Happy Birthday to himself. He's really changed in the last few months. He's more a little boy now and into everything he can think of. We had a great visit with Jeff's parents a few weeks ago and we are getting ready to see Lily! If all goes as planned, we will hopefully get her referral in a few weeks :-). Ben asks about her some, but I don't think he understands what getting a sister means. Well, i hear Ben waking up, so I'd better go. I'll try to post new pictures sometime this week. We hope that everyone has a wonderful holiday season! I know we will-we are so grateful that Ben continues to do well :-). Happy Thanksgiving!

Saturday, October 16, 2004 9:00 PM CDT

Hi everyone! It's been a wonderful fall so far. Ben is enjoying "peschool" and growing fast. At his last clinic visit he was 40 inches (3ft4). Not that we ever thought he would be short :-). He's really blossomed at preschool and has certain kids that he plays with. He's more a little boy than a baby now. He will be three years old in December which I still can't believe! On to his medical care: he continues on the same regimen for maintenence with the occasional spinal tap. He's adjusted to it pretty well and doesn't give us a hard time taking his meds. He still gets "hyper" and moody with steroids, but it's been livable :-). He had a clinic visit Friday (his monthly) and was also due a spinal tap. I have to confess that I absolutely hate this, but he did fine as always. Thank goodness he is completely sedated when they do the tap. We had a really nice surprise when Jeff showed up. He was on call the night before and had a very light schedule on Friday. Ben loved having Jeff there and they both had the nurses laughing with their antics :-). We realized that we have two more years to go treatment wise, but that's OK. Ben will be finished with all this before starting kindergarten. He's thriving in spite of the meds and he continues to remain in remission. We have so much to be grateful for! A piece of news before I go- we think we may hear news re: Lily by the end of November! We look forward to showing Ben his new sister. I think we will make a great big brother. Take care everyone! I hope this post makes sense- I've been feeling a little "under the weather" and still very tired. It's time for me to get to bed! Lorie

Saturday, September 18, 2004 8:55 AM CDT

Hi everyone! Time has gotten away from me and I realized I hadn't posted in a while. We've been busy around here with home improvement projects, Ben's preschool, etc. Of course, it could be said that no news is good news :-). He did have a clinic visit yesterday for his monthly vincristine dose and antibiotic. His ANC has improved to 1354 and all his other counts are holding steady, which is great. Dr. Casteneda seems quite pleased with his continued progress and we'll keep his meds "as is". Ben is now 39 inches tall and weighs 37 pounds. He's really growing and is the tallest kid in his preschool class :-). No big surprise there- Jeff is 6'3 after all and I'm not that short either. Ben has adjusted well to preschool and is now going 3 days a week (I think he would go every day if we let him). He loves playing with the other kids and listens well to his teachers (OK, at least he listens to someone ;-)). They have activities that he enjoys (music, playing outside, messy art projects) and he is thriving. I am actually getting things done as well. We almost have Lily's nursery completed and other household repairs and improvements have been done. We're just about ready for our newest addition and think that Ben will make a great "big" brother. Thanks so much for keeping Ben in your prayers! He is thriving and happy, which we are extremely grateful for. Hope that everyone is well! Take care, Lorie

Tuesday, August 24, 2004 1:40 PM CDT

Hello to everyone! Looking at the date, I realized that August was almost over. The summer has gone by so quickly and we are eagerly awaiting any news on when we can go get Lily! Referrals are moving along well, so we are hoping that we will get a referral some time in November :-). Ben is in his third week of preschool and managed to enjoy today's class despite being on steroids. Yes, it's that time of month again. He had his Vincristine and antibiotic IV on Friday and is finishing up his five day steroid meds. We survived it OK :-). Ben actually did pretty well this go around. He's been "jittery" and so, to help him sleep, we've given him Benadryl at night. His ANC improved to 1247, so once again we had to adjust one of his meds. He'll get the 6 mercaptapurine five days a week (MWFSat,Sun), instead of every other day. I've been writing his schedule on our calendar to remind us ;-). We go back again in 2 weeks for a blood draw, which is nice. Not much else going on here. Jeff's mom is going to visit next week, then later in the month, it'll be time for the high holidays at our temple. We look forward to going this year, since last year we were unable to. Take care! Lorie

Friday, August 13, 2004 1:49 PM CDT

Hi everyone! Well, Ben has started preschool this week and we both survived ;-). His first day was Tuesday, and he was eager to be there. We had taken him to the AJCC on Sunday for open house, to see his classroom and meet his teachers. When we arrived on Tuesday, he made a beeline for his room, ready to play with the trucks. I had a hard time getting a goodbye from him :-). He did realize that I had left- according to his teachers, he would cry for a minute, then he would be distracted. I think that it was harder for me than it was for him. I felt a little lost when I went back home. Jeff, being the sweet husband, made it home for lunch. He took me out to eat at a great restaurant and it helped distract me some. Although Ben cried some, the teachers were able to console and distract him, something I thought they may not be able to do. Yesterday was better for him. His teachers told me that he didn't cry once! We're so proud of his first week- he was quite cooperative when asked to do something (wash his hands, take plate to trash, join the group in "circle time"). Pretty good for a child who has been very isolated, I think. We had some other good news today. We returned to clinic for a blood draw today. His ANC is still a little on the low side (900+), but Dr. Casteneda still believes it's the medicine, not a return of the leukemia :-). She doesn't feel it's necessary to repeat a bone marrow draw, which has us relieved to say the least! She's just going to leave his medication dosage the same for now. Ben continues to amaze us with his charm and good nature, despite what has been thrown at him this last year. It's hard to believe that it's almost been a year since this all began. I am so thankful for all the support that we have received and thankful for having Jeff and Ben in my life! Take care everyone! Lorie

Sunday, August 1, 2004 9:24 PM CDT

Hi all! I realized that I haven't posted here in a few weeks (bad mommy!), so I thought I'd give an update. We had Ben's monthly vincristine and antibiotic visit, Friday before last. He was also due a spinal tap as well. Ut was quite a long day. We got there in plenty of time, but ended up having to wait an hour and a half for the anesthesiologist to sedate Ben. Luckily, Ben did not seem to care much that he had not eaten :-). The spinal tap went fine, although they had to give him more sedation to "knock him out". They also had to readjust his steroid dose since he had grown 2 cm in 2 weeks! He's a growing boy, ya know ;-). We survived another week of steroids, although his sleep was affected this time. He would wake up at 6:30AM after falling asleep around 10:30-11 PM. He was also pretty moody, so we were relieved when we gave him the last dose last Tuesday! He's sleeping better now and so are we :-). We did have to return to clinic last Friday since his counts were still below 1000 when he went in for his spinal tap (ANC-758). Dr. Casteneda adjusted his doses AGAIN and by this past Friday, his ANC had rebounded (ANC 1500!!!). She's going to leave his home doses the same for now and we go back in two weeks for a check. By the time we go back, Ben will have started preschool. He starts the 10th and I confess that I am a nervous wreck thinking about it. Ben, I'm sure, will be fine once he gets used to it. He's hesitant around other kids and a bit sensitive, so preschool will be good for him, I think. Hopefully, I will be able to actually leave the building on the 10th :-). I told Jeff that it's hard since I have been providing most of his care for the last year, to trust that he will do fine in a classroom in someone else's care. Oh well......we'll survive, I'm sure. Take care everyone and thanks for checking in!

Friday, July 9, 2004 11:22 AM CDT

Hi everyone! I hope you all had a wonderful 4th of July holiday. Ours turned out to be fun. Our neighborhood had a party, so that's where we ended up. Jeff was on call (of course), so we had to stay close to home. Jeff got a few calls but got to stay at the party with us, which Ben and I both liked. On Monday, we went to Atlanta for a few days. We had a good time- I took Ben to the Children's Museum then to the CNN center for lunch (thank goodness they had a Chik Fillet!). The night we got there, we also took Ben to a favorite restaurant of ours, Doc Chey's Noodle House. A perfect place for our noodle eating boy. He had our waitress laughing at his noodle eating technique (bite the middle of a long noodle, then proceed to jam the rest into his mouth). I don't think I'd ever seen him eat a noodle like that :-). And last week, we returned to our regular play group- they hardly recognized him, he has grown so much. It's been so wonderful getting out again. I think Ben likes it too- he's always asking me to put him in his carseat! Well, today was clinic day after a two week break. There was no adjustments in his meds because his counts dipped below 1000 (847). Dr. Casteneda thinks that Ben is just extremely sensitive to the medicines (his red blood cells and platelets are fine). So there's no cause for alarm there! He's due back again in two weeks for another blood test as well as his other clinic meds (Vincristine, antibiotic). He's also due a spinal tap (part of the usual tx). So we get another two weeks to just do "normal" stuff. He's grown too. He's now 38 1/2 inches, 38 lbs and wears a size 10 (toddler) shoe. He's certainly a big boy :-). Take care and we hope that everyone is well! Lorie

Friday, June 25, 2004 2:43 PM CDT

Whew! I'm typing this in the midst of a full fledged tantrum (Ben, not me :-)). He's been going through a real whiny stage lately, so when he whines for something, I don't respond. He's pretty angry at me right now, but I'm just letting him wind down. He woke up from his nap in a rotten mood- guess the steroids aren't helping much. I have to say, thank goodness that Jeff isn't on call this weekend! Well, anyway, we went to Ben's clinic visit yesterday instead of today (his doctor is out of town today). Yesterday was the monthly vincristine and antibiotic so we were there a little longer than usual. We did get some good news though. His ANC was at 1187- Dr. Casteneda is going to keep his home meds the same for right now and we don't have to return for two weeks! If his ANC is higher then, she'll increase his dosage. So, for the first time in a long while, we get a few weeks off. I think we'll enjoy that :-). We're going to go back to playgroup next week and I'm getting him signed up for preschool which will start in August. We'll be going to Atlanta for a few days week after next as well. It's so nice getting back to "normal life". Well, better go- need to distract "Ming the Merciless" who is still crying. Take care everyone! Lorie

Friday, June 18, 2004 9:35 AM CDT

Hi all! We had another clinic day today- blood draw again. Ben's white blood cell counts are better, but his ANC is still not quite 1000 (close, though- 978). His meds will remain the same for the time being. Dr. Casteneda did decide to stop his physical therapy for the time being, since he seems to have "caught up" in his physical development. He's doing so well! We go out to eat usually once a week and I have even taken him on a few errands. I think we may even take him to services at our temple tonight if Jeff makes it home on time. Ben has really been enjoying his time "out and about", although we are careful not to overdo it. I think we may even try to go to playgroup next week. And he's growing fast- they measured him at clinic today and he's grown 1/2 an inch (now 39 inches tall). He's looking more and more like a little boy instead of a baby. We take another big step in a few weeks when we start working towards the transition from crib to "big boy" bed. We figured now was a good time to start, since we may be getting a referral for Lily as soon as December! We do have alot going on and we have alot to be thankful for. Going to clinic every week may be a slight nuisance, but it's more important to us that Ben is growing and thriving. We're so proud of him- he truly is an amazing kid! Lorie

Monday, June 14, 2004 8:53 AM CDT

Wow! It's been almost a month since I have updated! I'm behind, aren't I? Well, Ben continues to do well. We are still going to clinic once a week to have his blood checked. His levels are not where his doctor wants it to be, so his meds have to be adjusted. Just when we thought our visits would lessen! Dr. Casteneda just thinks that it's his usual problem of his body slowly metabolizing his meds, so she has lowered his doses. They want to maintain his ANC at 1000- it has been fluctuating between 700 and 1000. Oh well, eventually we'll only be going once a month! We also had company last week. Jeff's parents were here for a week, so Ben had the full attention of his grandparents (which he loved). We got to take him out to eat and even had my family come up one day to visit (Ben got to see his cousins- he hadn't seem them since August '03). It was so cute, seeing him follow them everywhere. He had a great time! I'll get pictures of the party up in the next few days. We are stepping back out into the world and I have to say, it feels pretty good. We may try to go back to playgroup this week or next. Dr. Casteneda thinks that would be a good idea. We have also started (or attempting to start) Ben's transition into his "big boy" bed. So, lots of stuff going on and we are thrilled. Every day, Ben is growing and changing and when we think about how things looked last August, we are truly grateful! We hope that everyone is well and enjoying their summer. Take care and I'll probably update again in a few weeks. Lorie

Thursday, May 20, 2004 7:01 PM CDT

Hi all! Well, it has been a roller coaster ride these last few weeks, even if we have been in maintenance. Why, you might ask? Well, after I posted last, I got a call the next week from Ben's MD saying that the pathologist thought he had seen abnormal cells in Ben's bone marrow. Dr. Casteneda felt that what he was seeing was "young" cells that Ben's body was making in an effort to rebuild. Needless to say, Jeff and I were absolutely feeling wrecked. Dr. Casteneda kept reassuring us that she felt Ben was still in remission. They did several tests on his blood (TDT and gene restructuring- both came back negative for blasts). Plus, when Ben's blood was tested last week after being off meds for a week, his counts have continued to rise- another good sign that Ben is still in remission. They still want to do an elective bone marrow to reconfirm, but all signs point to good news, not bad! After a few weeks of being a nervous wreck, it felt good to hear that. So, Ben continues to thrive, even after a bout with a stomach virus (very mild) and a cold this week. His mom didn't respond so well when catching the stomach virus. It hit me a bit harder than him- luckily Jeff could come home during the worst of it. Ick! This has been a week of illness and recuperation here (at least for old mom- Ben has been amazingly active, even with the cold). Anyway, the plan is for Ben to return to clinic next week for bone marrow (elective), his vincristine and antibiotic. He's given us very little fuss with his chemo meds at home- he's very willing to take them if orange juice is involved. We're very lucky with that, since kids often hate medicine. Gotta go! Hope that everyone is having a good week. An update on our adoption process- the paperwork is now being authenticated in D.C. (yes, we did get our INS form) and should be on its way to China by next month! Thanks for checking in. Lorie

Friday, April 30, 2004 12:12 AM CDT

Hi everyone! The day has finally arrived- Ben is officially in the maintenance phase of his treatment! His bone marrow and CNS was clear, so he remains in remission. Needless to say, we are thrilled to be at this point and plan to celebrate tonight with pizza Ben loves and champagne (champagne not for Ben of course:-)). It honestly feels like a weight has been lifted and that Ben can lead a semi-normal life now! We start the steroid back (for 5 days out of the month) today and his mercaptapurine by mouth. He won't need another spinal tap for 3 months and won't require another bone marrow until the end of maintenance (around Oct. '06)- that is, as long as he stays in remission. Of course, Dr. Casteneda tells us that chances are pretty small that he will relapse during this period (we hope!!!). Ben got through the spinal and bone marrow draw wih no problems. They used the same medicine that knocks him out cold and got to work. Ben didn't flinch even when they were getting the bone marrow- it's a great sedation. Jeff was there in the room- he kept asking me if I wanted to leave during the bone marrow draw (they use an instrument that looks like a corkscrew). I told him that I didn't plan on looking so I would be fine. And I was! Jeff told me later that he shouldn't have underestimated me- of course, I could've told him that :-).
Well, now we won't have to go so often. We go back in two weeks for a blood draw. If his levels are stable and normal, we'll only be going in once a month. Actually, I think Ben will miss clinic, at least the playroom! So I'll be periodically updating the site as we continue. I want to share another piece of news: we are adopting! Yep, Ben will have a little sister, hopefully next year. We have talked about adopting from China for a long while and decided to start the process this past December. We now have all the paperwork ready to go, except a form from the INS (now USBCIS). Gotta love waiting for a government form! Hopefully, we'll be able to get that piece of paper sometime in May and send the paperwork by late May/ early June (keep your fingers crossed!). I'm actually working on a website for our daughter, so I'll post it here when it's finished. Thanks to everyone who have visited our site and have kept Ben in your prayers. It's meant so much to us. I know that he still has a few more years of treatment, etc. but it really feels like we have taken a huge step forward. Take care and have a great weekend! Lorie, Jeff and Ben

Tuesday, April 27, 2004 3:01 PM CDT

Hi all! Well, once again, we have a slight delay in treatment. We got Ben's blood work back this AM and it is just under 1000 (ANC=957). At least his WBC is rebounding nicely and is just about back to normal. His platelets remain steady at 270 and his hemoglobin and hematocrit are normal. So, we wait until Friday to start maintenance. Today wasn't a total wash- he did go ahead and get his IV antibiotic, so that's one thing we won't have to get on Friday! Ben feels great- he's on the move constantly unless he is sleeping, so I keep moving as well. I think that Friday will be the day, and we've just been delayed by a week and a half-not too bad. Will let everyone know how Friday goes. Take care and thanks for stopping in! Lorie

Friday, April 23, 2004 2:35 PM CDT

Sorry! I forgot to post yesterday about Ben's blood draw. Well, we have another delay. His counts were only around 760, not close enough to 1000 to start Maintenance. We'll try again on Tuesday AM. Dr. Casteneda has scheduled us for the LP and BM with the thought that his counts will be above 1000 by then. We hope so! We just want to get started! On a brighter note, we've been able to get outside just about every day this week. You just have to mention the word "outside" and Ben is running for the door. He loves going to the local parks, especially. We are also planning a trip to the zoo and to the aquarium in Gatlinburg before schools are out. We think that he will love it! Well, gotta run- Ben is stirring from his nap. I hope that everyone has a wonderful weekend! Lorie

Monday, April 19, 2004 2:02 PM CDT

Hi all! It's Monday again, so that means clinic day. Today was a blood draw again in hopes that Ben would be ready for Wednesday (Bone Marrow, LP). Well, his counts dropped some (ANC below 1000), so Dr. Casteneda cancelled his visit on Wednesday. However, she wants him back in clinic for another draw on Thursday and maybe we can start Maintenence on Friday instead. We're fine with that- it's not like he's been delayed for several weeks or anything. So, keep your fingers crossed that we'll move forward on Friday. On a lighter note, Ben received OK from his MD last week to go out with us Saturday (we went shopping at a furniture store for outdoor furniture- this place is huge and never crowded). Well, you could tell Ben had been secluded for a while. He was so excited when we went in and just wanted to explore. The problem came when we tried to keep him moderately "contained". He wanted no part of that and proceeded to throw a full blown tantrum. Jeff finally had to take him outside to calm down (took about 20 minutes). When they came back in, he was fine and we were actually able to purchase some things. It was quite an experience, and for a brief minute I vowed that we wouldn't take him out again until he was 5. We figured out that he just got extremely overstimulated (he's been quarantined for so long!). Today, his doctor encouraged us to take him to places like the zoo and aquarium, just to start working on being out in public. It's something we have to work on! That's about it. I'll update towards the end of the week. Hopefully, we'll have some good news. Take care everyone and hope that you enjoy the new pictures. Lorie

Monday, April 12, 2004 4:01 PM CDT

Hello everyone! I hope that everyone had a nice weekend. I'm sorry it took so long to post today. It's been a busy day. After clinic, we had to pick up our tax return to mail and I have been getting our "home office" room ready for the painters tomorrow. I love to "multi-task"! Enough about that stuff, on to Ben. Clinic day was pretty uneventful. I have to say this- chemo has not stunted his growth. I think I mentioned that he was 36 inches in December. Well, he's now 37 3/4 inches! I cannot believe it- he just keeps getting bigger. We went in for blood work today, to make sure his counts were recovering from the methotrexate. His ANC is back over 1,000 (1247), and his WBC is slowly recovering (still below normal, but rising). Dr. Casteneda is very pleased with his progress and feels that we will be moving into maintenance next week. So, here's the plan. Monday, we'll go back to clinic for more blood draws to be sure his counts are still OK. Then Wednesday, we'll go to clinic for Ben's bone marrow draw and IT methotrexate (spinal tap). This time, we get to have both done in clinic, not have to be admitted to the hospital for the day. Neither Ben, nor I mind that at all! They'll use the same sedation as last time, since he responded so well. So, we're very close to going to meds by mouth! I think that Ben would say he prefers that method rather than being "stuck". His bone marrow draw will be the last one until the end of maintenance treatment, but he will get IT methotrexate (spinal) every 84 days and vincristine (through his port) every 4 weeks.
After every week or ten days, that's not bad! Dr. Casteneda told me today that barring relapse, Ben will be finished with all treatment by October 2006. That seems so long, but when I thought about it, it's another 2 1/2 years. We'll also be going to clinic alot less, so that's a plus (although Ben loves their playroom now!). We're not be "out of the woods", by any means but life seems to be returning back to some form of normal. Ben is also back on track developmentally as well, according to his physical therapist. We have alot to be grateful for. Well, gotta go for now. Dinner will not cook itself and I have class tonight. The photography class has been great and I have even gotten in some practice (I need more though!). Take care everyone!

Monday, April 5, 2004 10:30 AM CDT

Hi everyone! It was clinic day once again and the last day of interim maintenance. It turns out that Ben only got his vincristine today since his ANC=867. The rest of his blood work looked good though. His hemoglobin was normal and his platelets were at 315. So, today's clinic visit was pretty short. What's next? Well, we will have to go to clinic next Monday, but only for a blood draw. He gets a few weeks off to "rest up" before undergoing a bone marrow draw prior to beginning Maintenance. Basically, they will check his bone marrow to confirm that he is still "in remission", that no leukemia cells are present in his bone marrow. Once that is confirmed, he will begin taking the meds that he will be on until October '06. In this phase, he'll take a low dose of steroids for five days every month, oral methotrexate once a week, vincristine every 4 weeks and mercaptapurine once daily. Sounds like alot, I know, but actually, it won't be bad at all. We'll go to clinic every two weeks until they get his counts stabilized, then will only have to go once a month. We're very close to being "back to normal". Dr. Castenada is encouraging us to put Ben into preschool this fall and to start back to our playgroup this spring. That's fine with us! We are going to have Ben start preschool at the local Jewish community center this fall. I think he will enjoy it. So, that's about it from Knoxville! We're going to go enjoy some sunshine. Take care and thanks for checking in....Lorie

Thursday, March 25, 2004 1:06 PM CST

Greetings to everyone! It's a beautiful day here in Knoxville- I think that spring has finally arrived. It was also clinic day today. We were there pretty early (7:50 AM) so that Ben could get another blood draw, since he was borderline yesterday. Well, he went from having an ANC of 978 to 1227 overnight! So, he was cleared for a spinal tap (intrathecal methorexate) and his IV methotrexate, as well as his vincristine and pentamadine (antibiotic). We were expecting to be there a while and we were (until about 12:15). Ben came through very well. They gave him the new sedation that knocks him completely out (prophofal? probably misspelled it), so an anesthesiologist was present, as well as another RN. Ben required much closer monitoring and they kept oxygen on him. No problems at all, though he did fight going under. He tried so hard not to fall asleep! It took about 15 mintues for him to come around, but he woke up smiling, ready for breakfast. He also kept staff entertained today- he was in quite a cheerful mood. I admit, I laughed when he said "Hey, Vicki" as his doctor walked in the room (her name is Dr. Vicki Casteneda and I have referred to her as Dr. Vicki). The nurses got a kick out of that! Despite having to be there all morning, it was a pleasant visit. Now Ben is close to finishing interim maintenance- he will have one more treatment on Monday, April 5th and then will have a few weeks off before starting maintenance! I can't begin to say how much we are looking forward to that, getting back to a "normal" life again. Well, gotta go. I'm going to relax a bit while he naps. Have a great weekend! Lorie

Thursday, March 18, 2004 1:30 PM CST

Geez! Here it is towards the end of the week and I realized that I hadn't updated the page. It's been a little hectic around here, so bear with me. Ben went to clinic on Monday as planned and had blood work done. As expected, his counts dropped some and he was unable to get the methotrexate (his ANC=around 300). He did, however, get the vincristine. We weren't too surprised that his counts were low, since this happened the last time that he was on interim maintenance. So, on to the next treatment which will be a week from today (IM#4). Next week will be a little different. I'll take Ben into the clinic the day before (next Wed) to have blood drawn. If his counts are up, we'll plan on having his methotrexate both IV and IT (spinal tap). Why are we going in the day before? Well, his MD wants to use a new sedative that will require anesthesia to be present. In the last few spinal taps, the sedatives that he was given made him woozy, but he still squirmed. So, if his counts are low on Wednesday, they will cancel anesthesia for Thursday (which means only vincristine and his antibiotic will be given). We'll have to wait and see, I guess. We are getting closer to being finished with this phase, though. On a fun note, we've had Jeff's parents visiting since Saturday. Ben has been having a blast, being the center of attention since then! They are leaving this afternoon and I fully expect to see Ben going through withdrawals then. I'll get a few pix posted today or tomorrow. It's been a really good week. Take care everyone and I hope that you have a great weekend!

Friday, March 12, 2004 8:43 AM CST

Hi all! Just a short note to say hello! Ben is doing well and is due back in clinic on Monday for treatment #3 for interim maintenance. He's been busy growing his hair back :-)and just generally being a toddler. He's talking more and more, surprising us with 3 and 4 word sentences. He's also been identifying different types of cars. This AM he looked up to see a Toyota commercial and said "toyota" before the announcer did! I guess he will have his own opinion whenever we go car shopping next. Of course, he'll probably want a truck. I'll update the page on Monday after his treatment- and we'll also have company. Jeff's parents are coming for a visit and Ben is really excited about that. I'll get pictures for the weekend, hopefully everyone will be able to see his "fuzz"-his hair is coming back in dark. I told Jeff that Ben looks like he has a "five o'clock shadow" on top of his head! I hope that everyone has a great weekend- take care! Lorie

Thursday, March 4, 2004 1:44 PM CST

Hi all! Can't believe I almost forgot to post today! It might have been because Jeff took Ben into clinic this AM to give me a break. He called me to say that Ben was a "go" for his chemo again today. His WBC has improved some (3.70), his HGB is normal (11.4) and his ANC is still above a 1000 (currently 1665). So far, the methotrexate hasn't "bottomed out" his counts, but they had done some lowering of his doses to begin this phase anyway (instead of starting at 100mg, they reduced that by 20%). We're hoping that his counts continue to do OK, but we'll see. I went on to the clinic around 11AM to meet them, so that Jeff could go on to work. Ben, of course, was doing fine. His RN told me that the only time he cried for me was when they accessed his port. Two minutes after that, he was fine :-). I have to say that he was happy to see me, though. He's currently upstairs taking a nap, and when he wakes up, we're going back outside (it's warm today- in the low 70's). We were outside for a little bit before naptime and he wasn't happy when I brought him in. I hope we're seeing the beginning of spring! That's about it for now...take care everyone. Lorie

Monday, March 1, 2004 1:26 PM CST

Hi everyone! Well, since Ben is back in Interim Maintenance, his next treatment is not until Thursday (every ten days). Ben is feeling pretty good, but a little more tired. He's taking longer naps and actually sleeps in until 8 AM. We think it's the methotrexate- that's the chemo that really wipes out his counts. Otherwise, he's a typical toddler- throwing tantrums, but usually pretty cheerful! We had a gorgeous weekend here, so we were able to get out some with Ben. We ended up at the golf driving range on Sunday. Jeff wanted to hit some golf balls, so Ben and I walked around. Jeff had let Ben hold one of his golf clubs, so Ben was trying to walk around with that (and it's longer than him). He even tried to hit a golf ball with it- he's not Tiger Woods- he finally reached down, grabbed the ball and threw it onto the grass. :-). Mainly, I think that he is just enjoying the outdoors. We'll both be happy when spring really arrives! Got to go for now- will update the page on Thursday post treatment. Take care everyone!

Monday, February 23, 2004 1:18 PM CST

Hi everyone! Whew! What a long day it's been. We just got home about an hour ago, and I'm happy to say that Ben is now in Interim Maintenance. His counts were back up (ANC=1183, HGB=11.3!, WBC. 3.87- still a litlle low, platelets=297), so he was good to start. Today, it was IT methotrexate (by spinal tap), IV methotrexate, vincristine and his antibiotic. According to Dr. Casteneda, his spinal fluid still looked clear, so that was good! Ben was pretty sedated, but still a bit squirmy- however, his doctor was able to get a good stick. The fun part came afterwards- Ben was eating some breakfast and it didn't stay down long. The RN had planned to give him anti-nausea meds after his IV, but changed her mind right after! Of course, this was the day that I left his spare change of clothes at home (go figure). They had a shirt that he could wear, but no pants. I ended up going to a store near the hospital that sells UT (University of TN) clothes- actually found him a cute pair of overalls. He was really stylish by the time we left- a very bright yellow polo shirt and overalls :-). He actually felt better soon after they gave him his anti-nausea meds. He had a sandwich and drink an hour later! I don't think much slows the Hirsh appetite down.... Oh, I wanted to tell this story about our weekend. Jeff took his car to the Honda dealer for a service. Since it would take a while, Ben and I went to pick him up and went inside the dealership to get Jeff. Well, Ben spotted the cars and went nuts! He ran up to one, saying "I drive!". We'd put him in the driver's seat and let him steer, then he'd want to go see another. I think his favorite was the Honda sportscar (S2000)- he didn't want to get out. We had to promise him chicken from Chick Fillet (?sp) to get him to leave. The salespeople in the showroom thought he was pretty funny :-). He really loves cars and trucks! That's about it for now- I need some lunch. Take care everyone! Lorie

Monday, February 16, 2004 9:03 AM CST

Hi to everyone! I hope that you all had a good V-day weekend ;-). Ours was nice and relaxing! Ben is feeling good, full of energy. We spent the weekend just trying to keep up with him. Jeff and I did get to relax some- he went shooting at a local range with people from work and I met a friend for coffee. On Sunday, Jeff took me out to eat for a belated birthday dinner (couldn't go during the week). So, it was an all-around nice time. Today, of course, was clinic day. Ben was supposed to start Interim Maintenance if his counts were normal. Well, his counts are higher, but not high enough to start IM (WBC=1.87, HGB=10.7!, platelets=390, ANC=390). We'll go back on Monday for another draw. According to his doctor, it's not surprising to have a delay. She figures his counts will be back to normal by next week. So, Ben gets another week off from chemotherapy. I don't think he'll mind that too much! Thanks for checking in......Lorie

Monday, February 9, 2004 12:21 AM CST

Hi everyone! I hope that everyone is well. We are busy with Ben and day to day stuff. Ben is well and full of energy (hard to believe that he is in delayed intensification!). Ben is in the final week of DI (another rest week) and his counts are getting better each time we test them. We were actually at clinic last Thursday for a blood draw (possible transfusion). What we discovered is that Ben's counts had not dropped any lower since that Monday. He left without having to be transfused then. We went again today and found that Ben's counts are continuing to rise. His ANC is up to 397 (from 196), his WBC is up from .97 to 1.63, his HGB is up to 8.7. His platelets took the biggest jump from 97 to over 400! So, no transfusion at all! His blood was clotting so well that they could not use the first blood draw (his blood clotted in the vial- unusable). It didn't make Ben happy to be stuck again! Of course, once we were done, the tears disappeared and he ran out to the playroom to play with another patient. Dr. Casteneda is pleased with Ben's progress. Apparently, Ben's lack of illness/lethargy is not common during delayed intensification- most kids do get sick. So we are truly thankful that he came through this phase as well as he did! The plan now is to possibly start interim maintenance again next week with Ben being tested in 6 weeks (bone marrow, spinal tap). If that is clear, we will go into the phase that Ben will be in for the next few years (Maintenance- some pills by mouth, no more mouth care, etc and a more normal scehdule). We ask that you continue to keep Ben in your prayers, that he will be able to enter this phase! Thanks to everyone who has been visiting! Lorie

Monday, February 2, 2004 12:13 AM CST

Hi everyone! Today was clinic day again, but just for blood work. Ben has finished the DI chemo (his last thioguanine pill was given last night and last dose of Ara-C was last Thursday)! We were told by staff to watch for fever and infection this past weekend since his blood counts were going to drop. Well, so far, so good- he's been feeling OK. He sleeps a little more, but when he's awake, he's a bundle of energy! In fact, he wanted to wrestle Jeff last night- kept pushing Jeff, getting him to fall over. So no fever or infection at all, although his counts are lower than Thursday. It also helps that we don't take Ben to other places (restaurants, etc)where he could be exposed to infections or viruses. His platelets are 93, ANC=397 and his hemoglobin is 8.4. He's borderline for needing a blood transfusion, so Dr. Casteneda wants me to bring him back on Thursday. A good thing he didn't need transfusing- I actually didn't have him ready to have his port accessed today (for the first time, I forgot to put his numbing cream on his port this AM). They ended up doing a finger stick and found that he didn't need transfusing after all! Oh well, this just reminds me to have everything together the night before, so I don't rush around in the AM. All in all, DI went better than we expected and now we rest up for interim maintenance (which could start back in a few weeks, depending on counts). We're so thankful that Ben is feeling as well as he is! He is truly an amazing child and we're so lucky to have him. We're now looking forward to Spring, when we may be ready to get back to a more "normal" schedule where Ben can go back to his playgroup and to visiting neighbors. I have to confess that I'm looking forward to this as well! Take care everyone! Lorie

Monday, January 26, 2004 12:05 AM CST

Hi everyone! I hope that everyone is keeping warm, wherever you are. The weather here is up and down- last week temps were between 30 and 50 degrees during the day. Ben is feeling well so far. He had four days of treatment last week (the Ara-C or Cytarabine was given M,T,W,TH), but we didn't have to stay in clinic long, since they kept Ben's port accessed those four days. At home, he never seemed to notice that there was tubing there and it didn't bother him while he slept. He responded well to the chemo- none of the chemos last week made him vomit. He was full of energy this weekend as well! He was acting like a typical toddler, into everything and keeping us on the move. We had a great weekend with visits from Ben's Papaw and his Aunt Debbie. Ben enjoyed a chance to get behind the wheel of his papaw's pickup truck (I'll post pictures later) and told us, "I drive!" He didn't like it when Papaw actually had to take his truck back and made his feelings clear! As I mentioned last week, his counts were very good, which is why he's a bundle of energy. In fact, his ANC on Thursday was 2000! Of course, we know that last week and this week's chemo will cause his counts to fall again. His doctor expects that by Thursday, his blood count will be low. As for today's clinic visit, it was uneventful. He received his Ara-C and had blood tests (WBC now down to 2.97, but ANC=1500 and platelets are 200). We keep his port accessed again this week until Thursday. He may need another blood transfusion this week or next, but after this week, he'll have a few weeks to recuperate before going back to interim maintenance. I found out today that Ben is a hit with some of the younger girls in clinic. He has a 4 year old admirer, according to her mom. He's such a flirt! I'll have to keep an eye on some of these girls ;-). Take care everyone! Lorie

Tuesday, January 20, 2004 9:54 AM CST

Hi all! I'm a little tired today after returning from the hospital. Yes, Ben began his second phase of delayed intensification yesterday. His ANC went from 297 last week to 1087 this week! We were a bit surprised at the results, but actually glad to get strated. Yesterday, he received the cytoxin (which required an overnight stay), Cytarabine and IT methotrexate with a lumbar puncture. Wow! Quite a bit for a little guy, I know. His LP came back clear (good!!!) and he tolerated the new drugs OK so far. He'll have to go to clinic Wednesday and Thursday this week for the Cytarabine, then four days next week. He is also taking thioguanine by mouth for two weeks as well. Whew! Alot to remember! Last night was long. Ben and I both got little sleep, but you don't go into a hospital to rest ;-). We were very happy to be discharged this AM! We have to watch for nausea/vomiting, fever and blood in urine for the next few weeks. Today, he seems to still feel good, so keep him in your thoughts and prayers! Before I sign off, just want to say congratulations to Greg and Jill Landis on the birth of their son, Max! Also best wishes to Steve and Rawewan Frankel, who are expecting their first child very soon. Hope that everyone is well and keeping warm! Lorie

Monday, January 12, 2004 4:18 PM CST

Hi everyone! Today was clinic day for Ben and it turned out to be uneventful. Ben's counts (as expected) were too low to begin the second half of delayed intensification. His ANC was only 249, so he gets another week of rest before another blood test next week. I can't say that we're upset because he'll have another week to recover. Ben is also enjoying his grandmother's attention at this moment. Phyllis could not fly here until yesterday (being that Portland had a major snow storm last week). I still got away for a few days. Jeff and Ben had a real Daddy/son weekend and reportedly had a great time (so much for Ben missing me ;-)). I'm refreshed and ready to help Ben get through one more month of intensive chemotherapy! We are keeping fingers crossed that we'll be back to a more "normal" schedule by spring with Ben able to be out in public more. Right now, I wish everyone could see what he's doing. He's dancing to Stevie Wonder and spinning in circles (truly amazing that he's feeling this good). He's an amazing kid, that's for sure! Keep visiting and please keep him in your thoughts and prayers! Lorie

Monday, January 5, 2004 10:13 AM CST

Hi all! Well, it's another Monday, so another morning at clinic. Today was a pretty good day. Ben was only needing a finger stick for blood work (he was cooperative :-). His blood counts were still on the low side (ANC=490, WBC= 2.07) but his platelets remain good at 250 and his RBC remain normal. Dr. Casteneda wants to see him back next Monday when we will possibly begin the second half of delayed intensification. However, we won't be surprised if he's not ready. Ben took his last dose of steroids last night, so I figure we'll see his counts take another dive next Monday (it happened the last time). I can't say that I'll miss the high dose of steroids though. He's been jittery and ravenous for food (yogurt has become a new craving) over the last few days. He's a little swollen from water weight and not sleeping very well. That ought to change this week once the steroids are out of his system. Despite being on call this weekend, Jeff was a great help, giving me breaks from Ben's "crazed" behavior. We're both a little tired, but we all survived! Ben also got a "haircut" this weekend. With a good portion of his hair falling out, we decided to cut off the hair that was left. It's a different look for him, but he makes it work :-). I got a bit emotional, though. For the first time (at least to me), he looks like a cancer patient, which makes me sad. On a more cheerful note, we expect to have Ben's grandma back with us on Wednesday for a visit. Phyllis is staying with us while I go out of town for a few days (a break before dealing with DI). We look forward to her visit! Thanks for visiting us! Lorie, Jeff and Ben

Monday, December 29, 2003 10:46 AM CST

Hi everyone! It's almost the beginning of a new year and we're hoping that this coming year continues to see Ben progressing. We finished Chanukah Friday night and now Ben has new toys scattered everywhere. He loves the little trucks and blocks the best! He still likes the vacuum but is not as consumed with carrying it everywhere. Today was our third and last chemo treatment for the first phase of delayed intensification. His WBC and ANC are low (ANC=241), but he still received treatment (Vincristine and Doxorubicin). Our stay was not half as long as the last few visits. We were there only for a few hours this time. We also had a nice surprise- Jeff came to clinic this AM! It turns out that no patients were scheduled for him this AM, so he came to see us instead. Ben and I both enjoyed seeing him there :-). Ben also begins his last week of steroids for this phase. We expect that he will feel a little grumpy, but a week is still not as bad as having the steroids for a month! The only side effect we have seen so far is some skin problems on his buttocks. That's been so painful for him, but it's clearing up. So what happens now? Well, he'll go in for a blood draw next Monday, but no chemo treatment. He'll maybe begin the second phase of DI the week of the 12th, but only if his counts are up. The second phase will be rougher, mainly because he will be receiving four different types of chemo that will be new to him. We can only hope and pray that the side effects will be few. That's about it for here. We hope that everyone has a safe and happy New Year! Lorie, Jeff and Ben

Monday, December 22, 2003 1:07 PM CST

Happy Holidays! We have been enjoying Hanukkah. Ben is more fascinated with lighting the candles than he has been with any gifts. Each night, he has attempted to blow them out (guess they remind him of his birthday last week!). He's feeling pretty good. He did have a reaction to one of his chemo drugs (peg asparaginase) on Thursday. Five minutes after his injection, he started coughing and gagging, also broke out in a rash. It took a little Benadryl to make the rash go away and they had to monitor him for a few hours after that. It gave me quite a scare, but 5 minutes after the Benadryl, Ben was smiling and eating a sandwich. Today was the second round (Vincristine, Doxorubicin and his antiobiotic), so it was a long morning. His WBC was low, but platelets and ANC were in pretty good shape, mainly because he was on steroids last week. Dr. Casteneda wants him back tomorrow for plasma transfusion (his peg injection lowered his clotting factor). So, it's back to clinic again tomorrow. At least Ben enjoys going now, so it's not too hard to get him in the door! He'll be due to get a third round of chemo next week, then will have about a week off before the second phase of delayed intensification begins. Whew! We're being very careful now to keep him away from anyone who's sick, especially with the flu being so strong this year. Poor kid has now been isolated for the past month, not going anywhere but clinic. I'll end this for now by saying that we hope everyone has a safe and happy holiday! Lorie, Jeff and Ben

Monday, December 15, 2003 12:02 AM CST

Season's Greetings! I hope that everyone is having a stress free holiday season so far. :-) Ben just had his first treatment for delayed intensification today. His ANC was good (1212), so his doctor wanted to get started. It was actually a great visit since Jeff was able to go (he had the day off). He helped me keep Ben entertained through the various treatments. Very helpful for me and Ben loved having him there. Ben received his vincristine, doxorubicine and methotrexate as well as a lumbar puncture. I have to say that this LP went much smoother than the last one! They gave him a slight increase in sedation which helped him not be so squirmy this time. So, we have finally begun the hard part of his treatment. We're keeping our fingers crossed that he'll tolerate treatment OK. We go back on Thursday for an injection (pegasparaginase- sp) then return Monday for another round of chemo. It'll be a busy time for us since we'll also celebrate Hanukkah starting Sat (although it'll just be us here at home). We did get to enjoy Ben's birthday yesterday (we had it on Sunday, the 14th) with his two sets of grandparents. Ben got some great gifts, but I think his favorite is a talking vacuum cleaner. He's played with this quite a bit, although he's showing alot of interest in his new tricycle too. It was a small get-together, but we'll be able to really celebrate next year (he'll be three and will probably have a few ideas on how he wants to celebrate!). All in all, a great weekend! He has had a great time with his grandparents, being the center of attention and showing off new skills. I think that they may have a hard time leaving on Wednesday. I hope that everyone is well! Thanks for checking in. Lorie

Wednesday, December 10, 2003 2:06 PM CST

Hi to everyone! Well, delayed intensification did not start today as scheduled. Ben's ANC is still a little low (897), so his doctor wants to wait until Monday. I have to say that I was a little disappointed (want to get started so we can get done!). However, I am not surprised. He reacted this way during interim maintenance as well. Dr. Casteneda feels that Ben's counts will be OK by Monday, so we'll have the weekend with Ben's grandparents and no steroids! We're having a small birthday party this Sunday (family only) for his second birthday, so it's nice not to be dealing with his chemo then :-). I hope that everyone is ready for the holidays! We have all of Ben's Hannukah gifts, but still need to buy his birthday gift. Of course, Ben is still happy playing with soda bottles and my cell phone, so finding a gift is tough (what could be more fun than a soda bottle?). Jeff is looking forward to the end of the week- he's taking a few days off while his parents are in town. He's been so busy, it's going to be great spending time with him too! I'll update this page again next week and will hopefully have pictures of his birthday online by then. Take care, everyone!

Tuesday, December 2, 2003 2:34 PM CST

Hi all! I hope that everyone had a wonderful Thanksgiving. We had a quiet day at home, celebrating together and thankful that Ben continues to feel well. We also got a visit from my sister during the weekend. All in all, a good holiday! Monday, Ben had to return to clinic for blood work. As expected, his ANC dropped down (from 1287 to 483) and his WBC was down some. We were expecting this, since Ben had received methotrexate last week. Other than that, things looked good. The plan is for Ben to start delayed intensification next Wed. (Dec. 10th). We also have to go to outpatient on Tuesday for an echocardiogram. They require this to be done before Ben starts the doxorubicin. So, next week will be pretty busy with chemo and the arrival of Ben's grandparents from Oregon. They'll be here to celebrate Ben's 2nd birthday which will be Dec. 16th. Hard to believe sometimes! That's about it for now. I hear Ben stirring from his nap, so I'd better go for now. Take care! Lorie

Monday, November 24, 2003 12:29 AM CST

Hello to everyone! Today was the last day of interim maintenance for Ben. His counts were much better (ANC=1287) so he received his methotrexate (at a lower dose), vincristine and pentamadine (antibiotic). It was a long day in clinic, getting the medicines and having a spinal tap done as well. The spinal tap didn't go as smoothly as usual. He was sedated, but started squirming when the needle was inserted. His doctor couldn't get any spinal fluid, so the needle had to be repositioned. It was the longest ten minutes of my life! I'm sure I have added a few new gray hairs after that:-(. Of course, Ben was fine afterwards, eating a full breakfast and laughing with the nurses and Dr. Casteneda. I probably was more traumatized than Ben (which is fine with me!). Now, we wait 16 days before the beginning of delayed intensification. We still have to go in next week for blood draws to check counts, though (can't get away from clinic that long ;-)). Ben is having a blast right now. He is excited when we're out in the car because he gets a chance to see trucks (his obsession now). He's talking more every day and is just a happy little guy, which we are very thankful for. I hope that everyone has a safe and happy Thanksgiving this Thursday! Lorie, Jeff and Ben

Monday, November 17, 2003 1:31 PM CST

Hi all! Another day at the clinic for blood draws. The clinic was full of kids (all three MD's were seeing patients today), so Ben had a blast! He was pretty mystified when a little girl his age wouldn't let him play with the kitchen set in the playroom. You can tell he's not around other kids that often by his reactions. Well, at least he didn't try to hit or bite her back! As for his blood work: his ANC has dropped further (around 480) and his WBC is low again. Dr. Casteneda believes that Ben's body is still trying to metabolize the methotrexate from a few weeks ago. She reassures me that Ben's other blood work (platelets, hemoglobin, etc) is fine and they didn't find any abnormalities with his bone marrow. I do worry, though. He's been doing well so far, I guess there are setbacks at times. Dr. Casteneda said that she has had kids go about a month with low counts from the methotrexate. So, we move on. The next chemo is scheduled for Monday, 11/24. This will be the last treatment in the interim maintenance phase. We will then wait 16 days before beginning the "dreaded" delayed intensification phase. I guess that the sooner we get into it, the sooner it will be done, right? Oh well......that's about it from here. I'll update again next week. Lorie

Thursday, November 13, 2003 12:58 AM CST

Hi everyone! Well, we went for our 4th round of chemotherapy today, this time at the hospital. I had my hands full with Ben. He was full of energy this AM and wanted to explore everything in his room. Jeff couldn't come with us since he's on call today:-(, so it was just us. I took him up to his room first before checking in with admitting (the admitting area was full of kids and I didn't want to take a chance that Ben would catch something). Luckily, his nurse could stay with him and the admitting process today was a much shorter wait! We got Ben settled and labs drawn pretty quickly. While we waited for anesthesiology RN, Dr. Casteneda came to visit. She told me that we had a change in the plan of treatment today. Apparently between Monday and today, Ben's ANC dropped again (from 1180 to 860). She told me that Ben would not get the methotrexate today, but he would continue on the vincristine. Needless to say, I was a little nervous- what did that mean for Ben's progress? Would that hurt his chances of staying in remission? Dr. Casteneda reassured me that missing a few doses of methotrexate would not hurt him. In fact, Ben (being on this particular trial with IV methotrexate) had already received 150 mg total of methotrexate in two treatments. If he had been on oral methotrexate, he would have been receiving 20 mg oral per week (taking in 100 mg total over 5 treatments). So, in effect, he has taken in more than he would've gotten with oral methotrexate. Hearing that did alot towards easing my anxiety! Dr. Casteneda seems to think that Ben may be one of those kids who metabolize methotrexate slower (which can keep his blood counts lower for a longer period of time). He went up to the OR for the bone marrow draw only. When he reappeared back in his room, he acted as if he had been "possessed"- he threw a huge fit, crying and kicking, wanting to get down and walk. Problem with walking was that he was still slightly sedated, so he couldn't keep his balance. We had a real struggle for about 15-20 minutes :-(. I think that I got quite a workout. The funny thing was, I sat him in the rocker and rocked him- he became calmer once he burped. It was pretty strange! His nurse seemed to think that he may have been nausious from the anesthesia and having some pain from the bone marrow draw. He was smiling again once they brought him some cheerios and a banana. Ah, life with a toddler! Good news is that Dr. Casteneda did not see any leukemia cells in the bone marrow, so the chemo is still working well- another big relief :-). So, we continue on with treatment. He will go for his last round of interim maintenance chemo on the Monday before Thanksgiving, then we will see about when he may start the dreaded delayed intensification phase. With his counts bordering on the low side, Jeff and I have decided to stay in Knoxville for Thanksgiving instead of spending it with my family in Chattanooga. It's sad that we can't go, but my family gatherings can be large (greater chance that Ben could catch a viral infection, etc). That's all for now- take care everyone! Lorie

Monday, November 10, 2003 10:13 AM CST

Hi all! We just got back from clinic. Ben's doctor wanted to check Ben's ANC before Thursday. His ANC is back above 1000 (1180) and his other counts look good. His platelets remain in the 400 range, his WBC is now back to normal and RBC are about normal. So we are a go for Thursday treatment. We found out that they will reduce his methotrexate dose by 20% for this treatment. He will also have to go into the hospital for this chemo round. That's because they are going to do both bone marrow and LP, so he needs to go to the OR. That's OK with us. Ben has become a little more agreeable, so taking him in is not so bad. I just have to make sure I take Spongebob videos to keep him entertained ;-). I actually had a hard time getting him out of the clinic today. He wanted to play in the playroom with his new friend, Kaitlyn. I guess the nurses were right when they told me he would adjust well to this new situation (clinic visits, etc). He's been so amazing. He continues to progress and he's such a cheerful little guy! We are so blessed to have him. I'll update this Thursday after his visit. I hope that everyone is doing well. And I do have to add this: WAY TO GO TENNESSEE VOLS (for their win over Miami on Saturday). Take care! Lorie

Monday, November 3, 2003 12:10 AM CST

Hi to all! We just got back from the clinic for day 14 of interim maintenance treatment. Today, Ben only received Vincristine and not his methotrexate. Apparently, the last dose of methotrexate lowered his ANC (currently at 360). They won't give methotrexate until his ANC is back to 1000. What does this mean? Well, he will not get his next dose of methotrexate until next Thursday and instead of increasing the IV dose, they will decrease it. Dr. Casteneda told us that reactions like this were expected and will not hurt Ben. We'll go back to clinic next Monday for blood work and then Thursday for treatment. So, we're OK. Ben was impressing all in clinic with his energy. He was into everything! He also met a little girl who is close to his age (she just turned two). They had a great time and Ben got in a few hugs (I told you he is a flirt! ;-)). We also had a great time this weekend! Friday, Ben had so much fun seeing all the kids in their costumes. The weather has also been warm, so we took Ben back to the park where he had a great time on the swings. We're trying to get him outside to play every day. Once the cold weather gets here (and he starts delayed intensification), he'll be indoors alot. Take care! Lorie

Friday, October 31, 2003 1:50 PM CST

Happy Halloween to all! Things are going well here in Knoxville. Ben is due for his next round of chemotherapy Monday (interim maintenance #3). We hope that he continues to tolerate treatment well, but his oncologist warned us that he may have a reaction this next time (apparently quite a few kids do when the dose of methotrexate is increased to 200 mg/ml). We're keeping our fingers crossed that the effects will be minimal. He has been feeling so good, that it's hard to watch when he does have a reaction. He is talking up a storm and actually putting some words together in short sentences (he usually has to repeat it to me several times before I catch the sentence :-)). We are not trick or treating this year, but we do have the candy ready for the kids. Ben is a little young for that anyway, and is not interested in candy (yet). I think that he will enjoy seeing all the kids dressed up in their costumes tonight! He continues to do well in therapy and has been surprisingly cooperative (I always wondered how you got a toddler to do therapy, but this home health agency has some pretty talented therapists). He's practically running, but we still are watching for any problems (since he is taking Vincristine). So far, so good. Well, I'll update again on Monday. Hope that everyone has a wonderful Halloween and a great weekend! Lorie

Thursday, October 23, 2003 11:43 AM CDT

Hello to all! Today was chemotherapy day for Ben. He handled his treatment wonderfully. In fact, it was the first time that he didn't cry the minute we got there. He was eager to get into the playroom and even seeing the nurses didn't upset him! The only time he cried was when they had to access his portacath (I think he was more mad than scared). We got another dose of IV methotrexate and Vincristine. His methotrexate was increased from 100 mg to 150 mg, per protocol. Hopefully, he will continue to tolerate the medicine. The reintroduction of vincristine has already caused a slight limp, but he's still able to walk and move around on his own. The therapist is pleased with his progress and I know that Ben is happy with being independent again! We'll continue the therapy and exercises and hope that the vincristine effect this time will be minimal. He also started on a new antibiotic which is given once a month through IV (pentamadine). I do have to say that having 10 days in between treatment was like a mini-vacation for us! Ben did not have any fevers or infections, so we didn't have to visit clinic in between chemo treatments. Day to day life actually felt "almost normal", especially since Ben does not require any chemo meds at home. Ben is feeling so well, so we are enjoying this respite. His blood counts are low (his ANC was only 697), but that's to be expected. We just have to continue being cautious about what Ben is exposed to (still no outings to public places with large crowds). It's not been so hard to do because Ben is so young. He doesn't give me a hard time about staying home, especially if Katie, his babysitter is here! Please keep Ben in your thoughts and prayers! I hope to get some new pictures up this weekend, so visit again soon. Lorie

Monday, October 13, 2003 1:10 PM CDT

Hello all!
Well, we just got back from clinic where Ben officially started interim maintenance. It was a very busy clinic (about 30 kids), so what should've only taken a few hours, took about four. LONG clinic visit :-(. Ben was a trooper, though. He didn't really complain much as long as he could watch "Spongebob Squarepants". For interim maintenance, he is taking two chemo meds, Vincristine and IV methotrexate, every ten days (provided his blood counts are good and he has no infection). Today, his counts were a little low, but his ANC= 1048. So today's chemo was given. Good news is that we don't have to give him any chemo meds at home until delayed intensification (which will probably start in a few months). Mouth care will be all the meds he will be taking for now. We actually stopped his antibiotic for now (he was taking a low dose Bactrim three days a week to prevent him from developing any nasty respiratory infections). He's been having a low grade temp off and on for the past few weeks, so they are going to see if Bactrim is the culprit. We know he hasn't had a bacterial infection (we have had enough cultures taken to know!). If all goes well, we won't have to go back to the clinic until next Thursday. Keep your fingers crossed! Other than treatment, Ben is doing well. He repeats so many words back and even says words we didn't think he knew (which means we really need to watch what we say around him;-)). Developmentally, he seems to be right on track, although we are aware that chemo may bring some slight delays. Ben and Jeff are enjoying the MLB playoffs and are cheering for the Yankees (secretly, I am cheering for the Cubs- go Cubs!) The weather is beautiful, so we take Ben out for walks when we can- the park is the only other place that Ben sees besides the hospital! Take care everyone! Lorie

Tuesday, October 7, 2003 1:19 PM CDT

Greetings everyone! Sorry I could not update the page yesterday, but did not have access to the internet, plus I needed to catch up on sleep! My allergies are kicking in and we had flu shots done yesterday at clinic. I had forgotten how achy and tired that can make you feel. Enough about me- Ben completed day 21 of his consolidation treatment which involved another lumbar puncture and he received his methotrexate in his spine. He did well, once again- ready to eat breakfast as soon as they would let him! His blood work continues to hold steady which means he doesn't require transfusions before treatment. Dr. Castaneda continues to be pleased with his progress. His LP results have remained clear as well. We are now reaching the end of the consolidation phase, whcih means Ben has been randomized to a particular treatment for the study. I don't think I have mentioned this before, but there is a study going on which examines the effectiveness of using IV methotrexate vs. oral meth and also two delayed intensification treatments v. one delayed intensification. After much discussion, we decided to place Ben in the study with the understanding that if he had problems, we could place him in standard treatment. Well, he was assigned to the IV methotrexate/one DI group. I have to say that I was relieved- the DI is rough enough (two months, eight different chemo drugs). I am glad he just has one! If his blood work is fine next week, we will go into interim maintenence for the next few months. Poor kid, he will have to undergo the heaviest treatment right around his birthday in December. Well, at least he continues to tolerate treatment at this point. Thanks to everyone for checking in! Check out the photo album- I have posted pictures from last week when Ben started walking again. Take care everyone! Lorie

Thursday, October 2, 2003 1:53 PM CDT

Hi everyone!
I am updating this today because I wanted to let everyone know that Ben is walking! He actually took steps without any support yesterday and by last night, he was walking all around our bedroom! Needless to say, we are thrilled with this newest bit of progress. He did have a therapist come out today. She says he has some trunk and hip weakness, just needs to be strengthened through exercise. I think it helps that the chemo doesn't make him feel sick right now, so he has more energy to move. The nurses and his MD will be happy to see that he's walking when I take him back to clinic next week! I hope that everyone's week is going well. As soon as we get our digital camera software working again, I plan on posting new pictures. Ben is losing the puffiness that the steroids brought and looking like his old self. In fact, Jeff and I want to get his portrait done before he starts intensive chemo in December (while he still feels like smiling :-)). Take care and check back later for updates! Lorie

Monday, September 29, 2003 1:03 PM CDT

Day 14 of Consolidation- Ben once again tolerated the LP chemo procedure well. The Versed helps relax him, but doesn't knock him out, so we're only there a few hours total. His counts remain pretty good (WBC is 38,000, ANC is 1880) and even though his hemoglobin was a little low, he hasn't required a blood transfusion for a while. He continues to improve his mobility- today he "cruised" around the playroom, holding on to furniture for support. I'm thinking that he won't need therapy for long- he's so motivated to move himself! He was also in quite a toddler mood this AM- going from frustration to happiness in a matter of seconds. It's pretty hard to keep him distracted in the treatment room- he just wants to play with the equipment (which he's not supposed to do ;-)). Although his toddler behavior is trying, it's not as bad as when he was on steroids! That's what I keep repeating to myself on especially trying days. We continue to go to the park when we can. The weather here has turned cool and comfortable, which makes it a nice time to stroll. Ben really enjoys it and I think will enjoy it more when he's up running around. He's still homebound otherwise. We have a wonderful babysitter who comes in (at least) once a week to give me a chance to get out. Ben adores her and loves having her here. Thanks for stopping by! BTW, GO TENNESSEE VOLS, 4-0. Love, Lorie, Jeff and Ben.

Thursday, September 25, 2003 1:36 PM CDT

Hi everyone! We just returned home from the hospital after a brief stay. Ben developed a fever on Tuesday, so the last few days have been visits to the ER (Tuesday) then clinic and hospital (yesterday). All is well- it looks like Ben just has a viral infection. His doctor decided to send him home today. He had several doses of Rocephin antibiotic with no change in fever, so it looks to be viral. His cultures for 48 hours have also been clear. We just have to keep an eye out for any changes. Ben spent most of this morning pointing at his stroller and saying "home". I'm glad that I didn't have to disappoint him by staying another night;-). So, it was our first experience with an illness outside his leukemia and we didn't panic! I can't say that I wasn't a bit nervous, thinking something else was going on (cancer out of remission thinking). Well, got to go catch up on sleep- Ben is not an easy child to sleep with, so I haven't gotten alot of sleep in the past 24 hours! Thanks for stopping by!

Monday, September 22, 2003 2:50 PM CDT

Hello everyone!
Ben had his second consolidation treatment today. It was the first time that he had his lumbar puncture in clinic (the other times were in the hospital because he was also getting a bone marrow drawn). He did well with a little help from some medicine. He was awake but groggy while the doctor was administering chemo. Surprisingly, he did not stay groggy for long! By 20 minutes, he was sitting up and eating breakfast. He continues to tolerate the chemotherapy well- his counts are holding steady and it doesn't make him sick. He is becoming more active as the days go by. This weekend, he crawled everywhere and even pulled himself on to the couch. I suspect that we won't need the services of a physical therapist for long! He seems to be pretty motivated to move on his own. He's also showing those toddler behaviors (throwing tantrums) now, but after his steroid behavior, that's not so bad! ;-) Check out the photo album- I added some pictures from the weekend. As you can see, Ben still has some hair, but it's gotten pretty thin (maybe he won't lose all of it!) Thanks to everyone for the continued notes and the prayers. We really appreciate it! Lorie, Jeff and Ben

Monday, September 15, 2003 2:48 PM CDT

It is now official....Ben is in remission! His bone marrow results showed no leukemia cells at all. His ANC is a healthy 3319, platelets are 360,000 and best of all, his white blood cell count has returned to normal. Needless to say, we are thrilled! We figured his WBC was rising because he's actually more cheerful than he's been in the past three weeks. We're on to the next phase (consolidation). He still has to take meds at home, but less frequent (only 6mercatepurine once daily). I think that he'll be happy about that, although he hasn't really given us a hard time taking medicine. We'll be going to clinic weekly for the methotrexate and he will start physical therapy two times a week. I know that we still have a long way to go treatment wise, but his remission gives us hope again. Thanks to everyone for your contnued support and prayers! Love, Jeff, Lorie and Ben

Sunday, September 14, 2003 5:30 PM CDT

Just a quick note tonight- I am excited to announce that Ben just had his last dose of steroids tonight! OK, we are a bit excited about it. Even did a dance around the kitchen in honor of the event. I know it sounds silly to be excited about such a small event, but the steroids have really done a number on him. We look forward to having Ben back to himself (and not eating us out of house and home ;-). I'll be posting again tomorrow after his bone marrow results. Please keep Ben in your prayers! Love, Lorie, Jeff and Ben

Monday, September 8, 2003 1:19 PM CDT

Well, it's day 21 of Ben's induction treatment and it was time for another chemo treatment. He only had Vincristine today and blood draws, so it was a pretty brief visit. His blood counts continue to rise. Platelets went from 190 to 309, so that's definately back to normal. His white blood cell count and red blood cell count are slowly coming back up, but still low. That's OK, he still doesn't need to be transfused and does not have to return to clinic until day 28. That is the day we're looking forward to ;-)! He will be taken off the steroids and will be his last dose of the Vincristine, both which have been affecting his ability to walk. He will meet with another physical therapist next Monday for further assessment and treatment. However, Ben is showing some motivation to move. Yesterday, he actually pulled himself up to sit and then crawled some- the first time he has done that since he became ill!!! It's the little things like that which brings tears to our eyes. We see signs of our little boy! His mood will also improve greatly once he is off the steroids- he will return to the usual toddler mood swings, instead of his "Ming the Merciless" mood swings. We'll be happy to see that, as well. That's about all for now- thanks again for all your words of support and concern! Love, Lorie, Jeff and Ben

Friday, September 5, 2003 12:53 AM CDT

A quick update and more good news! We went to clinic today, anticipating a need for a blood and platelet transfusion. Ben, of course, was not happy to be there. However, we didn't have to stay long because Ben's blood work was good! Ben's platelet count had gone from 67,000 on Monday to 190,000! His other counts are also showing signs of improvement as well. Dr. Casteneda says that Ben is OK to venture out to open areas, such as the park. I think that's where we're heading this weekend. Ben will be glad to get out of the house for something other than clinic visits. Thanks for the continued support! Please keep Ben in your prayers. Lorie

Wednesday, September 3, 2003 12:24 AM CDT

Hello everyone! We just got very promising news yesterday. At the 14 day mark, Ben has no signs of Leukemia in his bone marrow or blood. He is what they call an "early responder". It doesn't change his scheduled treatments, but it does mean that the chemo has been very effective. We won't be able to say remission for a few weeks yet. His body is generating new, healthy red blood cells. Can I say that we are thrilled! His blood counts and platelets are still a little low, so that means probable blood transfusions on Friday. And despite the effects of the steroids, we see flashes of the cheerful Ben more often than not. We have so much to be thankful for now. Just want to thank everyone who has been so supportive of our family. It's hard to put into words how much the support means to us! Love, Jeff, Lorie and Ben :-)

Monday, September 1, 2003 3:11 PM CDT

I begin this note in the middle of Ben's induction phase of his chemotherapy treatment. It's the first time since this began that I actually feel coherent. As most of you know, we began this journey August 15, 2003, a day before Ben's 20 month birthday. He had just been treated for his second ear infection in two weeks. I had noticed him limping on Wednesday. By Thursday, he wasn't able to walk well. We have a wonderful pediatrician who is very thorough, so when I told him about Ben's gait, he recommended to get blood drawn and have an xray. Thanks to Dr. Blevins, Ben's ALL was discovered early. I still have a hard time seeing Ben as a child who has Leukemia. He has been through alot in the past two weeks. I see bewilderment in his eyes, unable to understand why people are "poking and prodding" him. It's so painful to watch- I just have to keep reminding myself that he has a good prognosis and that these treatments will make him well.

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