History

Friday, September 21, 2007 4:21 PM CDT

Hello Friends and Family,
Things are going fairly well here at our household. I had my surgery two weeks ago to have my gallbladder removed and all went well. I was a little sore for a few days causing Karl some concern but I am fine now.
Karl’s continues to have a banner year. School is going great. He loves his new teachers and was very happy to be reunited with the “old” ones too. He is making lots of new friends at school this year. Only one boy in his 2nd grade homeroom was in his class last year, the rest of the students are new to him.
As you can see by the pictures Karl is now a cub scout. That is going tremendously. He loves being part of the group and his fellow scouts are great at including him. I think he will have lots of fun and learn some pretty important life lessons being a scout.
Buddy Ball wrapped up in early September and Karl was very disappointed to see it end. He had a wonderful time playing. Thanks to Jill for arranging the league and to all the great buddies Karl met while playing. Especially Andrew, TJ and Katy.
I have to ask once again for you to keep our friend Alexia in your prayers. She is putting up a tremendous fight. With her determination and strength if a miracle were to happen it should happen to her but time is running out.
Take care and God Bless,
Judy

Friday, August 17, 2007 12:37 AM CDT

Hello Friends and Family,
I know it has been quite a while since I updated. I do apologize. I think I just took a break from everything for a while.
Karl is still doing great. He has had a fabulous summer. While I have been working Chelsey has cared him for. Chelsey is the big sister to Roni, Karl’s good friend. Chelsey has done a fabulous job of keeping them entertained. He got to go to the movies several times, the park and playground, the children’s museum and has been swimming. Also lots of trips to the Hot Dog Shop and McDonalds. Poor Chelsey, she probably never wants to see another hot dog.
In June we of course attended my cousin Mary Ann’s wedding. Karl was the ring bearer. He did a great job and looked incredibly handsome in his suit. It was nice to be with my family. I got to see some cousins that I hadn’t seen for years. What a treat. Plus all my sisters and husbands flew in, (except “Uncle Jiminy and Yunkle Craig", we missed you Guys!). We had lots of great family time together.
In July we attended the Pamer Family Reunion in Cuyahoga Falls. It was great to see all the family. Karl got to play with cousins and make some new friends. He did get carsick on the way up. We were worried that we would need to turn around and come right back home but once we got there he was fine. He ate a big lunch and played the rest of the day. Kevin got to catch up with all his cousins. He played a lot too. He mastered a new game. He and his brother Gavan went home as the undefeated champion team. Of course if any of you know the Pamer’s you will know that just printing that here will cause many challenges for a rematch.
Karl also got to go to day camp again this year. It was at Brady’s run park and he got to do lots of hiking and playing in the creek. They also had one day trip to the zoo. Karl really loved that. Thanks to Toni, Rachael and the rest of the gang for providing him with such a great camp experience.
Another part of Karl’s busy summer was Vacation Bible School. The theme this year was avalanche ranch. Karl had a great time. His counselor there was McKenzie. She is the sister of Jack, one of the UP KIDS. Karl loved VBS. They did a lot of singing, which is always a hit with him. Everyone there did a great job and was so nice to Karl.
Earlier this summer I took Karl to Kennywood for our company picnic. He only would ride a couple of rides but he had a great time. He loved driving the racecars and the antique car rides. We did those over and over again. When we got home he said, “that was fun, let’s do it again tomorrow.”
Karl also spent some time at summer school with one of his favorite teachers Miss B. She somehow managed to squeeze in teaching summer school with getting married and going on a honeymoon. Congratulations Miss B. or I guess it’s Mrs. B now. She is in charge of the Verbal Behavior Program that Karl is enrolled in through his school. It has worked wonders for Karl. He is an amazing chatterbox now.
All in all it has been the best summer Karl ever had. I can’t begin to tell you how good it is too see him healthy and playing. Out in the sun having fun like all the other kids. He missed so much in the past 4 years. I am thrilled to see him finally getting what he deserves.
I on the other hand have not faired so well. I think PTSD has set in. I have been having lots of stomach issues. Apparently my gallbladder is the culprit so I am having surgery next week to have it removed.
Sadly I once again have to ask all of you to remember in your prayers another sweet child who is losing the battle with the monster. Little Alexia, one of the first online friends we made has now suffered relapse from her second transplant. Her only hope now is a miracle. I do still believe in miracles so please pray for one now.
Take care and God Bless,
Judy

Sunday, April 1, 2007 5:20 PM CDT

Hello Family and Friends,
I am so sorry to be so long between updates. It has been a month full of ups and downs. Karl is for the most part doing great. He is growing like a weed and seems happier every day. I just had him for his first well check up with his pediatrician since finishing chemo. He is now all caught up on his inoculations. One less thing to worry about. He is in the 95or weight and height on the Down syndrome growth chart so I guess he is rebounding as well as we could ask. It is so great to see him healthy.
We did have a scare early this month. Karl woke in the middle of the night with a severe asthma attack. He just couldn't breathe. It was terrifying. We tried a breathing treatment but it didn't seem to help. Karl was so scared. We ended up at the ER (1:30 in the morning, it's always 1:30 in the morning). Karl was much better by the time we got there. They put him on oxygen and did a chest x-ray. Everything was fine so we got to go home. We now have an inhaler for emergencies. He is still taking Singulair daily. So far we have had no reoccurrences.
I have been sick off and on all month too. Fighting some sort of virus. Lots of coughing. I just can't kick this darn thing.
Some good news - my cousin Mary Ann is getting married in June. Her fiance is from England and so she will be moving there with him after the wedding. It will be hard to say goodbye but they sure are in love so we wish her the best. Mary Ann asked Karl to be her ring bearer for the wedding. I sense some excellent Kodak moments at this one!
My Mom had surgery on her back early this month. She is recovering well. What a strong lady. Karl has been very concerned about Grandma's boo-boo in her back. He asks often to go up and visit to "check on Grandma".
The bonus to this is that Aunt Betsy and Aunt Suzy were here to help Mom while she recovered so we got to spend lots of time with both of them. It was such a treat. Karl sure loves his Aunts.
Kevin has as always been the rock through all of this. He is always so strong and so supportive. I am the luckiest woman. I have the two best guys in the world.
Take Care and God Bless,
Judy

Thursday, February 8, 2007 8:21 PM CST

HAPPY BIRTHDAY KARL!!!!
Today you are 8 years old. Mommy and Daddy are so proud of you. You are the bravest, strongest, smartest boy in the whole wide world. Every inch you get taller, every pound you get heavier, every year you get older gives us more joy, more to love. We are the luckiest Mommy and Daddy ever. The day you were born was the best day of our life.
Love you Forever and Ever,
Mommy and Daddy

Friday, January 26, 2007 8:10 PM CST

Hello Gang,
Just a short message today. I have been extremely busy at work and at home this week. We are preparing for Kevin's mother and father's 50th anniversary party. It's nice to think that anything lasts that long these days.
Karl is still nursing a cold. Everytime I think he is getting better he has a setback. I had him to the doctor today. He has an ear infection, a bad cough and some wheezing. He is now on antibiotic, codiene and breathing treatments. But he is very happy and active. he did give me quite a bad scare today. He got a rash on his face that looked exactly like petechia. I freaked. The doctor looked it over and said that it did look a little like petechia but she didn't think it was. She said that even if it was she is pretty sure it was caused by his violent cough. I was pretty shook up and scared for a while until I looked at his face. It has started to go away. Then tonight after his bath it came back but this time the spots were raised and crusted over which petechia does not do. Never a dull moment.
I have terribly sad news to report. Sweet Baby Donovan lost his battle shortly after my last post. I really grieved for him. It just seemed the worst kind of waste to me. Poor baby was diagnosed when he was only 4 weeks old. He only lived for 2 years. Not right, not right at all. I really hate cancer.
God bless all of you,
Judy

Monday, January 15, 2007 12:18 AM CST

Hello Everyone,
Sorry to have been so out of touch. Things are now going great for Karl. He seems to be healthy and he is back to working hard at school. He has been having lots of fun with all his new Christmas presents. He really likes playing air hockey with Daddy.
I am slowly but surely getting all of my health issues taken care of. I still have lots of dental appointments in my future but I think the problem will be solved.
Our Christmas was one of the best ever. The time we spent with family was so enjoyable. Karl enjoyed every minute. He really seemed to get into the spirit of giving this year, for which I was grateful.
We lost one of our online friends just after the holiday. Joseph, who was only 13 years old, lost a brave and courageous battle against the monster. Please pray for his family.
And please keep praying for Baby Donovan who continues to defy the odds and keeps kicking cancer’s butt. His only hope lies in God’s hands so we must storm heaven with pleas to keep Donovan with us. His mother is an incredible display of true courage and love.
Pray for a cure.
Take care may God bless you with a wonderful joyous New Year.
Judy

Tuesday, December 12, 2006 3:54 PM CST

Well things were going great. Ever since that port came out Karl has been King of the World. What a change in attitude. I knew that lump disappearing from his chest was what would make it real for him.
We were getting back into the normal swing of things. Work was going well and we were almost ready for the holidays.
Then night before last I woke at 4am with a terrible toothache. Having had an abscessed tooth before I knew right away that was what was going on. The pain was unbearable. Luckily I had some Vicodan leftover from my neck spasms.
I went to the dentist yesterday and she confirmed the abscess, lanced it (OUCH!), put me on antibiotics and referred me to a specialist. I now have to have a root canal done Thursday morning at 7:45am. I was prepared to deal with this having been through it before. I was even prepared for the monumental cost.
But then I picked up Karl and when we got home he started acting sluggish and wanted to be held. When I held him I instantly knew he had a fever. 102.3 to be exact. We were a little concerned because it was exactly 2 weeks since his surgery which was the cutoff for worrying about infection at his incision. It soon became obvious that he has a virus. We spent a bad night between the two of us. Both miserable. This morning Karl was much better. He played for a while but then got sluggish again and the fever returned. I spoke with the doctor and they said this is the pattern. He should be better in 2-3 days.
My tooth is very painful. I am still gulping down the pain relievers.
Thank God we had the decorating, the shopping and most of the cookie baking done. I do have laundry piled to the ceiling and the house is a mess but I feel way too lousy to care.
But my baby is done with chemo and no matter what this will be a happy happy Christmas.
Please pray for our dear little friend Baby Donovan. he has just relapsed for the third time. This sweet baby just had his second birthday and has spent his whole life on chemo. Now this. There is very little hope. It is in God's hands, so please pray that he gets a chance to know how wonderful life can really be.
Take Care and God Bless all the children,
Judy

Tuesday, November 28, 2006 7:26 AM CST

THE PORT IS OUT!!!
Karl's surgery was a big success yesterday. He was practically calm about the whole thing going in and the surgery went smoothly. It was over in 40 minutes.
This was Karl's 9th time for surgery and every time before we have waited 3-4 hours for him to come out of the anesthesia. Yesterday he was awake within the hour. They took him back just before 1pm and we were home eating roast beef dinner by 5pm.
Karl was very happy all night last night. I think he knew now that the big lump in his chest was gone that it must be over. NO MORE TUBIES!!!!!
I am so exhausted. For some reason this one really threw me. I was convinced something was going to go horribly wrong. I guess because it was the last hurdle. I am really feeling stress hangover this morning. I woke up at 4am and threw up. My head hurts, my body aches. But I don't care, it's all downhill from here.
Praise the Lord.
God Bless all of you,
Judy

Monday, November 20, 2006 9:03 PM CST

Hello Friends and Family,
Karl is doing much better. He seems to be fully recovered. He is still on antibiotics for a persistent ear infection but I think even that is cleared up.
His new surgery date is set for November 27th, the Monday after Thanksgiving. Please pray that this date holds. I calculated that this was just long enough for him to get better but not long enough for him to come down with something new.
Karl is back to school and doing great there. He is reading at a terrific pace. He is in Regular Ed for reading and is keeping up with the class. They have finished one reader already. Karl was able to read every story in the book. We still have his copy and he sits and reads it every night.
He is doing great with his numbers too. Kevin and I sat and listened to him count by 10’s up to 1,000 last night.
These are the things that help me keep faith that he is healed. God has given him so many gifts; He must have big plans for Karl.
I am cooking for Thanksgiving although we won’t have our usual crowd, just 13. Still I will probably be too busy to update until after the surgery.
Please keep Karl in your prayers and thoughts on the 27th. And if not too much too ask say a little prayer for his parents too. I don’t care how many times you send your child into surgery (this will make 9 for Karl) it never gets any easier.
Have a Happy Thanksgiving, you know what we will be giving thanks for in this house.
Take care and God Bless,
Judy

Monday, November 13, 2006 8:00 AM CST

New chapter in the never-ending saga – The rash turned out to not be chicken pox just a viral rash however…. Karl’s cough and wheeze came back with a vengeance. He was supposed to have his surgery tomorrow but I had to call this morning and cancel. I am taking him to the pediatricians this morning. I am going to try to get an estimate from them as to when we can reschedule this surgery. If it is more than a week then I plan to try to wait until after Thanksgiving. I will post more when I know more.
Take Care and God Bless,
Judy

Thursday, November 9, 2006 12:36 AM CST

Greetings to all from the Never-Never Ending Land,
Karl got over his pneumonia in time to go trick or treating on the 31st but then woke up the next day with a cough and runny nose. That turned into a severe cough, which turned into asthma. He is now taking a daily dose of Singulair to prevent the asthma.
We had a surgery date of November 10 for his port removal but of course they would not proceed as long as he was wheezing. I was instructed to keep an eye on it and to call them this morning to let them know how he was doing. Well he was getting better. He was even back in school. The wheeze seemed to be gone. Then last night when I was putting him in his jimmies I noticed red spots all over his arms and face. They were raised and a little crusted. My first thought was chicken pox. This is scary because kids who are immune suppressed can have serious complications from chicken pox.
I took Karl to our local pediatrician this morning and they said they didn’t think it was chicken pox but they weren’t positive. They suspect it is a virus. I am keeping and eye on it to see what develops. He is having no other symptoms, no fever.
Unfortunately they still had to postpone the surgery because of the rash. Neither chicken pox nor a viral rash are a good thing for surgery. So we are shooting for next week. I am currently waiting for them to call with a date.
Karl is for the most part feeling okay. He still has a bad cough and seems a little tired. Of course he is so congested that he is not breathing well and hence not sleeping well. He went back to school on Monday but I had to pick him up early because he fell asleep in the bathroom and then in the nurse’s office. Yesterday he made it through the whole day but did take a nap in the nurse’s office again.
I am so tired and weary. I guess I fooled myself that life was going to get easier when he finished treatment. I just want that damn port out. I had the mother of all migraines last night and have been crying all day.
I just keep reminding myself that at least my kid is off treatment. At least he is alive. We lost three more of our online friends this week. We have to stop this monster from stealing our babies. I have said it before and I will say it again, I really, really hate cancer.
Take care and God bless all of you,
Judy

Friday, October 20, 2006 12:45 AM CDT

Hello Everyone,
Well, Karl's cold turned into pneumonia. I thought he was getting better. Tuesday night he had a bad night but seemed fine in the morning so I let him go to school on Wednesday. I did call his pediatrician and make and appointment for after school. When we got there his pulse ox was down to only 93. The doctor said the wheeze was much worse and sent us to the hospital for a chest x-ray. He also doubled the dose on Karl's antibiotic, had me increase the breathing treatments and put Karl on a steroid.
Karl got his x-ray but there was no radiologist to read it so we just came home. The pediatrician called later to say that he looked at the x-ray and that he thought it showed pneumonia. He wanted us to head back up to the hospital so that Karl could be admitted. I talked him out of this.
I just felt that Karl wasn't that sick and that since hospitals completely traumatize him I felt he would get worse not better.
The ped made me promise to bring Karl into the office the first thing in the morning. By then Karl was much better. The docotr said there was no reason for him to be admitted and that we should just keep him home a couple of days. He has been doing well since. Getting better everyday.
This does mean that his surgery to have his port removed has been delayed. It will probably be at least 2-3 weeks. Sure hope it doesn't interfere with Thanksgiving.
Take care, God bless,
Judy

Tuesday, October 17, 2006 8:01 AM CDT

Hello Everyone,
Karl is sick again so his surgery to have his port removed has been postponed. He has a pretty bad upper respiratory infection plus and ear infection and he is wheezing. They think he might be getting asthma. I had him home all day yesterday and am keeping him home today as well. He is on an antibiotic, eardrops and I am giving him breathing treatments 3 times a day.
They are supposed to contact me today or tomorrow to schedule the surgery. They said it would have to be in 2 weeks so that they can make sure he is over all of this.
He barely slept at all Sunday night. Kevin and I took turns sitting up in the chair with him so he could breath. Last night was better. He actually slept lying down for a few precious hours. Although I think that made his cough worse.
Right now he is in the living room dancing to “Copacobana”, so I guess he is feeling a little better.
Once the date is set for surgery I will post again.
Take care and God bless,
Judy

Saturday, October 7, 2006 6:44 AM CDT

Hello,
Well I am finally updating. I am so sorry to have been so long. Once Karl finished treatment both Kevin and I seemed to slip into this giant slump. I was so exhausted. I would sleep everytime I so much as sat down. For about a month I was just going through the motions. Work, home, cook dinner, go to bed. Everything else just ignored. I guess this is pretty classic PTSD.
Now I am tryng to play catch up and boy is there a lot of catching up.
Karl has been doing pretty well. His counts are climbing,
10/05 -
ANC - 2500
WBC - 5.0
HGB - 13.6
PLT - 206,000
He still got an IVIG transfusion in September but now his IgG levels are at 810 so he shouldn't need anymore.
This past clinic visit on the 5th was a little traumatic. Karl's port would not work properly and he had to be stuck several times. The nurse did get a blood draw finally but then could not flush it or get any meds to go in. All he was scheduled to get was his Pentamidine, the prophylactic antibiotic. This would have been his last dose of Pentamidine so I asked if he could just be put back on Bactrim, another prophylactic anitbiotic for the next month.
The blood they did draw showed his platlets at only 23,000. I knew in my head that this was wrong but I couldn't help feeling panic that it might be something much worse. They started an IV in his arm and drew more blood which showed the counts I posted above, BIG sigh of relief.
There was still the issue of the port. Since Karl will need no more transfusions or infusions of any kind they decided that it will come out. This means he will have surgery next week. He has to get an EKG and an ECHO first so the surgery shouldn't be until the end of the week. I am so anxious for this to happen. I am worried about Karl going through surgery but so happy we are finally reaching this last step.
To Karl everything is still the same. Trips to the clinic with his prot accessed and IVs going in. Once that port is out he will realize it is finally over.
Otherwise Karl is doing great. He is loving his new school. He has had a few adjustment issues but he has a great team of teachers and therapists who are really committed to him.
Karl started attending CCD classes (Catholic Bible school)on Saturday mornings. Our good friend Karen is his teacher which is a big plus. I don't think Karl will be going this morning though. He woke up with the sniffles and I want to monitor him to make sure he isn't getting sick. I don't want anything to delay the surgery.
Karl was taking Prevacid 2 times a day. He had reflux from all the chemo. Once he was off chemo I waited a month and then tried to cut back but he has been waking at night with a reflux cough and a noisy tummy so we upped the dose again and have an appointment with the gastroenterologist.
I am trying very hard to get back to "normal". I have been walking everyday trying to take off some of this stress fat. I have been going to a chiropractor too. She was amazed at how out of alignment I was. Sleeping on those hospital futons and pacing the floor at night with a 50 pound child in your arms will do that.
Aunt Suzy is in town and took us all to dinner last night to celebrate our anniversary. It was great. Kevin and I haven't celebrated an anniversary in years.
Aunt Suzy also brought Karl one of those new TMX Elmos. I thought it might be too young for him but we are even having fun playing with this thing. It is amazing! What a blast. Karl just giggles and giggles playing with it.
I do pledge to do better in the upcoming months and try to stay in contact more to all those of you who have loved and supported me this long.
Take care and God Bless,
Judy

Saturday, September 2, 2006 8:48 AM CDT

Hello Everyone,
Karl started school this past Monday. It was a little scary for me. We moved him out of the approved private special education school he was attending and instead put him in public school in an inclusive classroom.
Plus we are now walking to the bus stop and he is now riding the "big yellow bus."
Karl did great this past week. He seems to really love his new school. Every day when he comes home he is very animated and talking up a storm. This helps confirm for me that I made the right decision. One of the reasons we pulled him from his old school is that most of his classmates there were very limited verbally. Being with children who talk alot will really stimulate his speech.
Karl's new teacher's are great. Plus the whole staff seems very comitted to watching over his health. This is reassuring to me.
Karl loves walking to the bus stop everyday. One of the sixth grade girls who catches the bus at our stop is the daughter of one of my oldest and dearest friends. I knew here the minute I saw her, she looks just like her beautiful Mom.
Karl had a minor ear infection this past week. I took him to our regular pediatrician. Karl was very good and let her look in his ears and dig out the wax without squirming. She gave us a prescription for high dose antibiotics. Karl took them for 8 days and was then fine. I had him back yesterday to recheck his ears and they were infection free. It is hard to describe how wonderfully normal that whole experience felt. Just go to the doctors, get a prescription and he is all better! I love life out of the shadow of leukemia.
Please pray for Max and Curran, two precious babies who spent their very short lives battling the monster. They both lost thier battle this past week. Keep thier grieving families in your prayers.
Also please pray for our friend Cam who is in a terrible fight right now and for precious Baby Donovan who just suffered his 5th relapse.
The Leukemia/Lymphoma Society is in the middle of their big fundraising drive. Please donate if you can. We must stop this monster that is taking our babies from us.
Take care and God Bless,
Have a great Labor Day weekend
Judy

Tuesday, August 15, 2006 2:26 PM CDT

Great Happy News today! We got the call from the clinic telling us that the bone marrow they extracted at Karl's last treatment was free and clear of any signs of leukemia. I have been a nervous wreck all weekend waiting for this news. Ever since I got the call all I can do is cry. It feels good to have happy tears on my face for a change.
God bless us everyone!
Judy

Thursday, August 10, 2006 4:36 PM CDT

FREE AT LAST, FREE AT LAST, PRAISE THE LORD WE ARE FREE AT LAST!!!
I'll be brief here because I am emotionally and physically exhausted. Karl got his last treatment today. Everything went well. He got extra sedation and barely flinched during the bone marrow test. They are usually pretty painful. The marrow looked good but we won't get the final word until Tuesday and I will of course post the good news then. I feel like I did the day after we got married. I know my life has made a positive turn around but I just can't grasp big picture. Maybe it will sink in tomorrow. Right now it is just good to be home holding my boy.
God Bless all of you for the support and love these past three years.
Judy

Wednesday, August 2, 2006 7:27 PM CDT

Hello Everyone,
Sorry to once again be so long between posts. Karl’s party was fabulous and I will post some pictures as soon as I get a chance.
It was quite a hectic week here leading up to the party. My sister Betsy and my niece Sophie (12) are in visiting from California. Betsy and I decided to take the kids up to Erie to a water/amusement park. We left on Monday (July 17) and planned to come back Wednesday morning. The vacation was going great. Karl didn’t like the water park but loved the amusement park. He had a great time at the arcade and on the merry-go-round. Unfortunately Tuesday night at 1am Karl woke up with severe diarrhea and vomiting. There we were with only a few changes of clothes and miles from the clinic. I was in a panic. We had to wait until Karl was feeling well enough to travel then we hopped in the car and headed back. Karl got sick a couple of times on the way home. It was very scary and God Bless my sister for keeping a level head and getting us home safe.
By the time we got home Karl was starting to feel better. The bad news was that within a few hours I was sick with the same symptoms, then Sophie, then my Mom. Betsy stayed healthy poor thing, which meant she got to play nursemaid the whole time.
With the party scheduled for Sunday I almost cancelled but luckily this was a quick virus that we all got over within a day. So we decided to go ahead with the plans.
Betsy, Sophie and my Mom were all amazing. I would have never pulled this off without them. They all worked like dogs, cooking, cleaning and baking cookies. We decorated the whole house for Christmas and Karl was thrilled.
We had quite a few people show. We invited those friends and family who had helped us in one way or another to get through the past 3 years. Thank heaven again for my Mom and my sister. Betsy kept the buffet table filled all day and my Mom kept an eye on Karl. I was busy trying to visit with each guest that showed.
A reporter from our local paper, The Beaver County Times came and did a story. It was in the paper the next day with 2 pictures of Karl.
Next Thursday will be Karl’s last treatment. He will get a spinal tap and a bone marrow aspiration. Then on Friday he takes his last oral dose of chemo.
I would like to point out to everyone at this time that Karl finishing chemo does not mean that Karl is cured. He is in remission but must stay in remission for 5 more years to be considered cured; as a matter of fact they don’t even refer to it as cured, they call it complete remission.
Karl will have to go to clinic for the next 3 months and still get infusions of Pentamidine, the prophylactic antibiotic, and IV immunoglobins, so he isn’t going to notice much of a change in the routine. But if his immunoglobins stay up then he will no longer need the infusions and he will have his port removed. After that it will be monthly visits for blood work, just a finger prick. Those will taper off until eventually he will only have to get his blood checked yearly.
Of course this is providing that all goes well. The first 18 months off treatment are the most dangerous time for relapse. Which of course means that I will be a nervous wreck. It just never ends. So please pray that all goes well.
And please remember in your prayers our friend, Kenneth and his grieving family. Kenny just lost his battle against the monster. His was a long brave fight. May God bless you Kenny.
Thanks to all our friends and family, May God bless you all.
Judy

Sunday, July 16, 2006 8:26 AM CDT

27 DAYS AND COUNTING!!!
Wow we sure are busy around here. We have been preparing for Karl's end of treatment Christmas in July Celebration. Lots of cleaning, cooking, shopping. Karl is getting quite excited.
We have also been enjoying the company of my sister Betsy and my niece Sophie who are in visiting from CA. We are having a great time with them. Betsy, Sophie, Karl and I are going for a 2 day getaway vacation to a park near Presque Isle this week. It will be a nice break from all the hustle and bustle going on here.
Karl has been fairly well. He had an upset tummy last Tuesday and had to miss a day of swimming with his camp friends. I think it was due to his morning meds. He didn't eat a big breakfast that day and I think the meds just upset his stomach. Then on Thursday we had clinic. His treatment went well but it was a sad day. We had to say goodbye to our beloved Dr. Sarah. Karl loves her so much. I just don't know how he is going to handle not having her around on his future visits. He bonded with her from the first day he met her.
And for me, well she has been the rock I clung to throughout this ordeal. so patient and understanding of all my worries. Never batted and eye when I would whip out my long list of typed questions. She is an amazing compassionate talented doctor. There are some lucky, lucky kids who will benefit from her services in the future.
Karl did have a bad bout of diarrhea the night before last too. He used to do this all the time after treatment. there was no reoccurence so I am assuming that is the cause although it has been a long time since he did that. At any rate he sure seems fine now.
Take care and God Bless,
Judy

PS - Since Karl's celebration is Christmas in July we are asking anyone who wants to send Karl a Christmas card.

Saturday, July 1, 2006 9:39 AM CDT

41 DAYS AND COUNTING!!
Hi everyone,
Sorry to be so long between posts. Things have definitely improved around here. Karl is doing great. No more health problems. I have been better too. Just adjusting to the new job and schedule. Very busy.
Karl is having a fabulous summer. Aunt Nancy and Uncle Bob were here for 10 days and we had so much fun with them. They had a present for Karl for every day they were here. He is so spoiled and I love it. Plus they took us out to dinner twice to our local 4 star restaurant. Karl ate a huge steak both nights, of course. He was in heaven.
Now Aunt Betsy and cousin Sophie are here. We are having so much fun with them. Family is just the best thing in the world. And those of you who know Aunt Betsy should not be surprised to learn that the barrage of presents did not stop when Aunt Nancy left.
Karl will start summer school this week and then camp the following week. I know he is going to just love spending time outdoors. He has missed so much of that. I am so happy that he can enjoy this summer.
As you can tell by the title Karl will be done with chemo in just 41 days, so exciting and scary at the same time. Karl will not be considered cured at this time. He has to stay in remission for 5 more years. The chance of relapse is highest too the first 18 months off chemo so I will be a mess with worry for a while. It is still a victory to finish chemo. The torture is over. No more toxic drugs being pumped into that precious little body. God really blessed us with great doctors and nurses, great friends and family and most of all with a little guy who has a heart as big as the world. He can come out on top of anything. He will always be my hero!
Take care and God Bless all of you,
Judy

Sunday, June 4, 2006 9:35 PM CDT

We have had a couple of exciting days around here. It all started at 3am Friday morning when I woke up and could not move a muscle. Plus my right arm was completely numb. I was terrified that I was having a stroke. After I calmed down a bit I started to gain some mobility and was able to get out of bed. I had terrible pain in my neck and shoulder. My head was bent severely to the left and I could not straighten it. I tried ice and heat then Tylenol but nothing worked. Luckily Kevin is on vacation so once we got Karl off to school we headed to the ER. Apparently I was having a severe muscle spasm. They gave me IV valium to relax the muscle and I instantly felt better. Kevin said my head was still crooked the rest of the day. The doctor prescribed valium, steroids and vicadan for the pain. I can’t drive while taking all of this so thank God Kevin was around because things got worse.
Since I wasn’t feeling up to cooking we went out to dinner that night and Karl ate a huge steak. When we came home he started acting like he had a tummy ache. I figured it was from over eating. I thought he was going to have diarrhea but instead he started throwing up. Then he got a fever, which shot up to 104. He has had a nagging cough all week but I didn’t think it was connected. I was still convinced this was a stomach thing. We called the on call onc and he sent us to the ER. Thank God we were allowed to go local instead of the hour drive into Pittsburgh.
Of course the local ER did not have the right size needle to access his port. I used to carry one in my emergency hospital bag but of course I had unpacked that a year ago. Kevin was so mad that they didn't have the right size and he really let them know it.
Any way they did a culture, a CBC and a chest x-ray. True to form Karl's fever broke as soon as we got there. The CBC came back with all in the normal range and the x-ray was clear. We will get the culture results on Monday. They gave Karl IV antibiotics and gave us a script for more. Karl stayed in shut down mode the whole time we were there until they took out his IV and told us we could go home. Then he sat right up and said, “coat on, shoes on, purple car, lets go home”. He slept well Friday night and woke up the next morning ok except that he was very clammy and his cough was worse. He also had a definite wheeze. I gave him a breathing treatment and the wheeze is gone but the cough is still there. In the ER he kept pointing to his chest saying that was where it hurt, I thought at the time he meant his belly and was just pointing high. Now I am convinced that he has Bronchitis. All the symptoms add up. The antibiotic they gave him should clear that up plus we have been giving him decongestants the breathing treatments regularly. So far he has been fine. Very active and happy, eating and drinking well. The cough is still there but not as frequent. Tomorrow is his last day of school so we want to send him. I will post an update as soon as we get the culture results.
Take care and God Bless,
Judy

Monday, May 15, 2006 4:13 PM CDT

Hello Gang,
Everything here is much better. We all got over the nasty virus. I am sure our water bill is going to be tremendous with all that flushing.
Karl was so happy to go back to school after all that time off. I am going to have to find lots of activity for him this summer so he doesn't climb the walls.
This Friday he and his classmates are going to the zoo and boy is he excited. He just can't wait.
Karl has chemo on Thursday and after that only 3 more treatments. I am going to calculate how many days and various other milestones as we approach the big day. When I get it all figured out I will post it.
We are planning a Christmas in July party to celebrate. Christmas is just Karl's very favorite time of year. I am going to decorate the whole house. Our neighbors will probably think I finally cracked. I am going to have everyone send Karl Christmas cards so start digging around for those extra cards from last year. I will give more details later.
For now we are counting the days until Aunt Nancy and Uncle Bob arrive (June 19) followed by Aunt Betsy and Cousin Sophie (June 27).
This could turn out to be the best summer ever!
Love and God Bless,
Judy

Wednesday, May 3, 2006 9:33 AM CDT

Hello Everyone,
Well things have been pretty hectic to say the least. I traveled to Harrisburg on Monday and Tuesday to attend a conference and rally held by the Arc of Pa. Kevin was on vacation so he took care of Karl. Well while I was gone Karl developed serious diarrhea. He has had it ever since. He is eating, drinking and not running a fever which is all good but (WARNING,GRAPHIC CONTENT) the stuff is just pouring out of him. He hasn't been in school since last Tuesday and it doesn't look like he will be going beck anytime soon. I have been in touch with the clinic and they are not too concerned as long as there is no fever and no risk of dehydration. It is definitley taking its toll on him and I am going to have to monitor him closely. Karl is notorious for taking a turn for the worse suddenly. I am very concerned for him right now. I will keep all of you updated on how he is doing.
Sadly two of our friends earned thier angel wings this week. Sweet Billie, a young lady from the UK died at home surrounded by a very loving family. And Precious Ray who was a remarkable example of faith lost his battle on Saturday. Ray told his Mom once that it was okay because if Jesus didn't cure him here on earth He would cure him in heaven. As his Mom wrote, "Ray was the miracle all along". I know this little guy will be a inspriation in my life for many years to come. Please pray for both these families as they cope with thier losses.
take care and God Bless,
Judy
UPDATE - one hour after typing this I ended up in the bathroom going from both ends. This is turning into one fun week.

Saturday, April 22, 2006 2:10 PM CDT

Hello Everyone,
So much tell this time. The biggest news is that CHEMO WILL BE NIX ON AUGUST 11, 2006!!!! More on that later.
I hope everyone had a great Easter. Ours was full of joy. Karl looked so handsome for mass Easter morning. I abandoned his signature color of light blue this year and bought him an orchid shirt with matching tie. He looked so grown up and handsome. I will of course post pictures ASAP.
After mass we had breakfast with Grandma who made a fabulous spread. Then we went out to her backyard for the traditional egg hunt. Karl just loves that. The big problem is coming up with stuff for inside the eggs. Since Karl won’t eat candy we have to get very creative.
After that we headed to the Pamer’s for the big Easter dinner. Karl had a good time there playing with his cousin’s Therese, Jessica and Atticus. I ate way too many of Aunt Eileens cut out cookies and almost spoiled my dinner. Grandma Pamer made a fabulous ham with her special scalloped potatoes, which are the greatest. Karl really loves the holidays.
Unfortunately Karl came down with a touch of the stomach flu on Monday. He woke us up in the middle of the night Sunday with diarrhea and then had it the following day. Just when I was starting to worry that we might end up at Children’s he got better. I kept him home from school on Tuesday but really didn’t need to. He was fine all day.
Thursday Karl had clinic. I was a bit apprehensive since he was scheduled for a spinal. Last time he got a spinal the anesthesia just didn’t work as well as normal and he definitely felt it. Dr. Sarah told us that this time we would use an extra anesthetic as well. I was worried how this would affect Karl but he did fine. The procedure went smoothly and I could tell he didn’t feel a thing. He was more doped up than usual. He was a little wobbly when we left.
While we were at clinic Dr. Wollman gave us the good news that August 10 would be his last treatment day. He will still have to take one more dose of oral chemo the next day but that will be it. NO MORE CHEMO! I can’t believe we are actually able to count the days until this happens. The light at the end of the tunnel seems so bright. God has blessed us.
We bought Karl a giant wooden swingset/play center as a reward for the end of treatment. My sisters and my Mom all chipped in. Karl will be just thrilled when he sees it. I don't think Kevin is quite as thrilled judging by the cursing coming from the garage as he tries to assemble it. It will be so nice though. It has a tower with a rock wall and a slide, 2 swings, a glider, monkey bars, a rope ladder and a sandbox. It will be so good for him to play on it as he needs to develop his strength. Not to mention he hasn't had much time in the sun. Kevin is trying to put it together in pieces in the garage so that he can then put it up in one day and maybe we can make it a surprise.
We were planning on having one big celebration party for Karl going OT but it looks like it will have to break down into several celebrations over the summer. I know I will be celebrating for years to come.
I should caution that this does not mean that Karl will be cured. It simply means that he will no longer get chemo. Karl will not be considered cured until he remains in remission for 5 years. This means I still have many more years of worrying but I at least I won’t have to give my boy toxic drugs everyday.
There is more good news here at the Pamer’s. I got a job! Achieva hired me to be the education advocate in Beaver County. Achieva is a corporation in the 'Burgh that provides advocacy and services to people with disabilities. I already served on 2 of their boards, which is how I found out about the job. It will be part time, which makes it a dream job for me. An education advocate helps families negotiate with their school to get the best education possible for their special education students. I am traveling to Harrisburg with my new boss on the 25th to meet with state Legislators and Senators at a forum on people with disabilities. This will be the only overnight trip I have to make. Otherwise my job will only be 18 hours a week and I will be scheduling my own appointments. This is a cause that is so important to me, truly a dream come true type of job.
Karl is getting really excited for summer. He knows that his Aunt Nancy and Yunkle Bob are coming in June and that his Aunt Betsy and cousin Sophie will be coming in July. Every time we mention that they are coming he goes upstairs and changes the calendar in his room to one of those months.
Spring has made our beautiful new home by the river even more beautiful. The flowerbeds in the front yard are blooming with dwarf Irises and tulips. The dogwoods and crabapples are all blooming. It is just gorgeous every direction you turn. Across the river the hillside is all green with some flowering trees mixed in, quite a view. Unfortunately at night it is spoiled by the giant red bulls eye light from the Target store built at the top of the hill. It is just obnoxious. I already boycott Wal-Mart now I am going to have to be mad at Target too! I am running out of places to shop.
I hope everyone has a wonderful spring and summer. We will be celebrating all season.
Please pray for our friend Ray who is still in such a battle. He is such a little giant. Also pray for our friend Billie, a sweet little girl from England. She has been sent home by the doctors to spend her final days surrounded by the love of her family.
Karl being so close to the end of his nightmare makes me think of all the children I know who were not so lucky. So pray for a cure. Pray that no other families have to face this monster and live through the horror of cancer and the loss of a child.

Take care and God Bless,
Judy

Sunday, April 2, 2006 4:15 PM CDT

Hello Friends and Family,
We’ve had some ups and downs since my last update. We had to cancel Karl’s appointment with the dentist. He had some bad mouth sores. We determined that they were probably allergy related and not from the chemo. I gave him Tylenol and Benedryl then the sores went away and have not returned. He still has his loose tooth and we rescheduled the appointment.
Karl’s appointment with Dr. Chi went real well. It only took three of us to hold him down so the doctor could dig the wax out of his ears. This was good because normally it takes five of us. He handled it well and after the doctor got the wax out he told us that Karl’s ears looked fine with no sign of infection at all.
Karl had chemo on the 23rd. That appointment went very smoothly. Karl’s oncologist called the day before to let us know that there is a nationwide shortage of IVIG and that the hospital was only giving it out on a need only basis. Since Karl has kept his immunoglobin levels in the normal range the last 3 months they decided he didn’t need it. I was a little worried since he is still fighting a cough but was also glad because this shortened our day at clinic by about 4 hours. I should have known better, as Dr. Sarah put it, “Karl never ceases to surprise us.” She called the following Tuesday to let me know that Karl’s immunoglobin levels were low. They drew blood to test them when we were there on Thursday and she had just got the results. Karl’s levels were only 67. Normal is 500 or above. This is the lowest Karl has ever tested at. I took him back up this past Thursday to get the IVIG transfusion.
Karl was still battling his cough during our first clinic visit plus he had a little bit of a wheeze. Dr. Sarah recommended that we give him breathing treatments before bed. We started right away and he sure seemed to be improving. By Tuesday he was breathing fine at night and no sign of the wheeze. So I stopped the breathing treatments. The next day he was back to coughing and wheezing. I started the treatments back up and when we saw Dr. Sarah again on Thursday she told us to keep giving them for at least 6 more days, which we are now doing. He is once again breathing fine and no coughing but I sure won’t stop the treatments until Tuesday. Keep your fingers crossed that this time he will be fine.
Karl’s next treatment is scheduled for April 20th and he will get a lumbar puncture. The good news about that is that it will be his next to the last one. After his April appointment he will only have 3 more months of treatment. We will still continue with the clinic visits so he can be closely monitored for the first year off treatment but no more nasty medicine.
Please send all your strongest prayers for our friend Ray. He is in a real battle right now. After 2 relapses he is now undergoing a treatment that may be his only chance. This little guy has an incredible strength and more faith than I have ever seen in one human being. He so deserves another chance.
Take care and God bless all of you,
Judy
PS - I will be posting new pictures in a couple days.

Saturday, March 11, 2006 8:20 AM CST

Hello Dear Friends and Family,
So sorry to once again be so long between posts. Karl has had a cold since the beginning of February and sure enough about 2 weeks ago it turned into a sinus infection. I took him to the local pediatrician and she put him on an antibiotic. It seemed to clear up the infection but he still has cold symptoms.
I too caught the same cold but faired a little worse. Mine turned into an upper respiratory infection with bronchitis. I was pretty sick for a while. I even missed Karl’s last clinic appointment, something I have only done once before. Kevin took a day off work and took Karl up. Karl handled the treatment fine and was very good for his Daddy (of, course). Then a few days ago I came down with one of the worst migraines on record. I took 200 mg of my medication and it did nothing. My doctor recommended that I go to the ER for a shot of Demoral but last time I was there it was packed and I waited for hours. I decided to tough it out at home. My migraines are getting more severe and longer lasting. Think it might be all the stress??? DUH!
Karl missed a few days of school because of his cold but otherwise has been doing great this year. He really loves school and is learning so much so fast. We are so pleased with his progress. Even this causes me worry though. (Cancer doesn’t give you a break on anything). The chemo Karl is receiving could cause learning disabilities as a late term side effect. We are naturally very concerned about this. I can find plenty of data on this and how it relates to typical children but there is very little information as it concerns children who have Down syndrome. I find this shocking considering that children who have Down syndrome are 10 – 15 ore likely to get leukemia. I took Karl to see our beloved Dr. Bill Cohen who runs the DS center at Children’s. It was so great to see Dr. Bill again. He hooked us up with an appointment at the child development center where a psychologist will evaluate him. We are also going to meet with Karl’s teachers so we can get a good idea of his learning curve and where he is now in his development and intelligence. I am acting on the theory that when I prepare for the worst that it never happens.
Karl has a loose tooth in the front, his first. He has an appointment at the dentist on Tuesday. This should be interesting. He hasn’t been there in a while and I am not sure how he is going to cooperate. He will also see Dr. Chi, his ENT, this week and then next week is the appointment with the psychologist Wednesday, followed by his chemo on Thursday.
It looks like we are in for one heck of a terrific summer. Karl’s cousin Sophie and her mom (my sister) Aunt Betsy are coming for a very long visit. Now we just found out that Aunt Nancy and “Yunkle” Bob will also be coming for a vacation. Karl just loves it when family visits. He was so happy when Aunt Suzy and Uncle Jimmy (or as Karl refers to him Uncle Jiminey) were here for his birthday. I made the mistake of telling him about the upcoming visits and now he keeps changing his calendar to July. He wants them here now!
Karl had early dismissal yesterday and Kevin had a day off so we picked Karl up and took him to the park. He was his usual cautious self on the playground at first but then got his confidence and climbed all over and went down all the slides. All in all he had a pretty good time. The downside is that it was pretty windy and he and I both woke up with lots of allergy symptoms. Nothing a little Benedryl won’t fix and it was well worth it.
We are still gearing up for the big celebration in August when Karl goes off chemo. I would like to point out that this just means he is off chemo, it does not mean he is cured. He will not be considered cured until he has been in remission for 5 years. When he finishes his chemo he will have been in remission for 3 years. He will still have regular appointments with the oncologists for a while. Still finishing 3 years of chemo and all that he has been through definitely deserves a celebration.
Please remember in your prayers and meditation our little friend Ray who is facing the worst news possible with amazing courage and determination. And also remember little Alexia who traveled all the way from South America to the states to get a bone marrow transplant. She is doing very well but is still dealing with all the complications that arise from the transplant. Believe me this is no picnic for anyone let alone a 3 years old little girl so far from home. Her parents refer to her as the Princess Warrior and they are right.
Take care and God bless,
Judy

Thursday, February 9, 2006 10:54 AM CST

Dear Karl,
Yesterday at 7:20pm made it 7 years since the first time we looked at your sweet face. We thought it was the most beautiful sight we had ever seen. Last night as I held you while you slept I once again looked at that sweet face and still thought it is the most beautiful sight I ever beheld. Our only prayer to God, the only thing we want out of this life is to be able to look on that face everyday for the rest of our lives.
I love you my sweet baby boy, with all my heart.
Happy, Happy Birthday
Mommy and Daddy

Thursday, February 9, 2006 8PM EST

I wanted to let everyone who couldn't attend in on all the details of Karl's birthday and this seemed like the best place to do it. Saves me a lot of typing to only have to post it once. That morning he helped me decorate. His Aunt Suzy decorated a big Football poster I bought with Steeler colors and Karl's name. His Dad went out that morning and picked up a dozen black and gold balloons and 2 Steeler balloons. Karl was so happy when he saw those. He raced around the house trailing the whole bunch. We had to wait until he was done playing to decorate with them.
After that the family started arriving. We started with a Tailgate menu buffet at 1:00pm then Karl opened his presents of which he got way too many. He really liked everything he got and has been playing with his presents ever since. His cousins gave him a fish. It is a Betta and very pretty purple/blue. Karl named it Big Ben. Karl had a great time being the center of attention while opening his gifts. He loved it even more when we sang and cut the cake. This is the first year he blew out the candle by himself. This is also the first year I did not bake his cake myself. I ordered it from our local bakery. I wanted it decorated with Steeler colors and if I tried that I would have ended up with black food color all over my kitchen. They did a nice job. It looked like a football field complete with goal posts and a little mini Steeler bobble head doll.
We had a little down time between party and the big game. Karl spent it playing balloon volleyball in the basement with Aunt Colleen and his cousins Jessica and Therese. The game was very exciting with lots of shouting and terrible towel waving, especially from Aunt Suzy. Karl opted to spend most of game time in the kitchen with me playing with his new toys and cousin Jessica. We had pizza and snacks at halftime followed by much more shouting and carrying on. One thing you can say for the Steeler's is that they sure give you a workout with every game.
Karl had a cold all day but it didn't seem to slow him down a bit. Unfortunately the combo of the late night and the days excitement aggravated his cold and he spent the next day home from school with Mommy who now also has a cold.
Yesterday he had his party in school. I took in treats and treat bags. We played games and ate then Karl handed out the treat bags. He filled them the night before with very little help from me, so he was very proud when he got to hand them out. They gave him a little paper birthday crown to wear in school. He wore it all day even after he got home and put it back on first thing this morning. I would say that he really enjoyed his birthday this year. Thanks to all of you who helped make it so special.

Tuesday, January 31, 2006 2:15 PM CST

Things are still rolling along fairly smooth at the Pamer household. Karl did have a big treatment last Thursday. He had to have a lumbar puncture with a spinal injection of Methotrexate, pretty nasty. The bad news was that Karl just didn’t sedate like he has in the past. His new nurse and I had to literally hold him down. We were told that as kids get older the Versed alone just doesn’t always do the trick, so next time he will get Fentynal along with the versed.
The good news is that Versed is an amnesia drug so he won’t remember anything and he handled all the other parts of his treatment quite well. He is still getting the IV immunoglobins, which are doing a great job in keeping him healthy. Unfortunately they take about 4 hours to infuse. The Pentamidine that he also gets monthly takes 1 hour and the LP held us up too so we had a 7 ½ hour day at the clinic. This means we got to sample some of the delicious cuisine from Children’s cafeteria, Lucky Us!
It was unusual this time because Karl stayed awake the whole time. In the past he has slept for as long as 3 hours after an LP. I was so grateful that Kevin was along on this trip so he could help entertain Karl.
Karl’s mood has been wonderfully upbeat this whole month. I don’t know if it is a Christmas hangover or in anticipation of his birthday but it sure is great to see him so happy all the time. He didn’t even get moody the past 5 days when he was taking steroids. The only side effect I noticed was the desire for lots of “Buggles” (Karl’s word for cuddling).
We are all set for the big Super Birthday party and Steeler Bash. Karl is really getting into spirit. It helps that he knows presents are on the way as well. I probably overspent on the black and gold decorations but I figure this is the start of another Steeler dynasty so we will be having Super Bowl Birthday Parties for at least the next 5 years.
As far as prayer requests go this time around I ask all of you to please pray for our little friend Ray. He is one of the toughest, pluckiest and most courageous kids I have met since we started this journey, and he really needs our prayers right now. Please ask God for a miracle.

Take care,
Judy
PS – Don’t forget to root for the Steeler’s.
GO STEELERS!!!!!!!

Monday, January 23, 2006 2:50 PM CST

Hello Friends and Family,
Things are still going great here in our household. Karl has been so healthy. I panic every time he so much as sneezes. I keep waiting for that other shoe to drop. He has been really happy too. I think he really loves our new house and yard. And the weather here has been so nice. We are having a very mild winter so far. Although I think we haven’t seen the last of the snow. At least I hope not. Karl and I haven’t even gone sled riding yet.
Well our big guy is going to have a birthday soon. I cannot believe that he will be 7 years old. Where does the time go? We have decided to make this a Super Bowl Birthday Party. I wish you could all hear Karl chant, “Here we go Steelers, here we go!” He is really getting into it this year. They have been having Steeler pep rallys at his school on Fridays. I went out today and everybody you see is wearing their black and gold. It is just a riot. I think people in this area are going to go nuts over the next two weeks. I figure Karl can be Big Ben’s good luck charm, since he is turning 7 and that is Ben’s number.
We did get some sad news last week. One of Karl’s classmates, passed away. He was only 8 years old. He had some serious health problems in the past but had overcome them. Apparently he got sick over the weekend and just couldn’t get better. I tried my best to explain this to Karl. I was so worried that he would make comparisons with his situation and draw scary conclusions. I did my best and I think he understood. He seemed a little sad. Please say a prayer for this little boy’s poor parents. They are living through my worst recurring nightmare.
I am still having my share of health problems. I go in for some testing in February that will hopefully shed light on what’s wrong. We know the cause is stress; we just aren’t sure what is the result.
Karl goes for his next chemo treatment on Thursday. The bad news is that it is a lumbar puncture. The good news is that he doesn’t have too many of those left. I will post then on the results. Keep praying and keep loving all the little ones in your life. They are so precious.
Judy

Monday, January 9, 2006

Hello to everyone and Happy New Year to all,
I just don’t know where to begin. I guess I should start with an apology that it has been so long between updates. Right after the holidays we had some illness go through the family so I am way behind on everything. Karl is just fine though. I do have him home from school but that is more for observation. I thought he might be coming down with a stomach bug. He was up all night with gas but he seems fine now.
First I will update you on Karl’s health. Karl was having some stomach problems. It was obviously reflux which he has suffered from since he started chemo. He was taking Pepcid daily for this but it didn’t seem to be doing the job anymore so Dr. Sarah switched him to Prevacid. Which he wasn’t able to start on until a week later after many phone calls to the insurance company to get it approved. Anyway, once Karl started on the Prevacid his stomach settled down a little but we still had to go to a gastroenterologist. She doubled the dose of Prevacid. I started giving him the double dose right away while waiting for the new prescription she wrote to be filled, stupid me. I ran out before the insurance company would approve the double dose. So more phone calls and more tummy aches for Karl until we finally got it settled. Wouldn’t you think that when they see a cancer diagnosis on a 6 year old kid they would just approve anything??? Don’t you just love the idea that some bureaucrat without a medical degree is making decisions about my son’s health? Some CEO fat cat at the insurance company is getting rich off of my son’s pain.
Karl had clinic on the 30th. He handled chemo just fine and all his counts were good. I had been a little worried because on Christmas day I had noticed quite a bit of bruising on his legs. This can be a sign of relapse. Okay I confess I was a lot worried but I didn’t want to share my concern with anyone and ruin Christmas. Once we got to clinic I pointed the bruising out to Dr. Sarah and she went and checked his counts. Since they were such awesome numbers we knew it wasn’t a relapse. Dr. Sarah asked me if Karl had been playing on the stairs, he had. She said the bruising looked like the type kids get when they fall up stairs. Mystery solved and a big load off my mind.

The good news is that none of this interfered with Karl having the merriest Christmas ever. The Friday before we had the family in for a nice party and all Karl’s cousins came down. Karl has a new idol in his cousin Brian who is much older and very tolerable to Karl jumping, pounding and hanging all over him.
On Christmas Eve Grandma came down for dinner and then we opened all the presents from Karl’s Aunts, Uncles and cousins, plus the huge pile from his angel Irene. Yes, you all overdid it. But Karl had such fun. I can honestly say that he loved every single present he got.
Christmas day we got up early and went to mass. Karl was a little disappointed. Since it was the early mass there was no organist or choir so no Christmas songs. After mass we went to Grandma’s for breakfast and more presents to open. Then it was on the Grandma and Grandpa Pamers. All the cousins were there again and everyone had a good time playing with Karl’s Elefun. We watched the Polar Express together and had a delicious ham dinner. The day after Christmas we headed to Grandpa and Grandma Lucy’s. We had a nice dinner and a good time.
Then on Wednesday Kevin’s sister Laureen and her family came in from Cincinnati and they came over for Lasagna. It sure was a nice way to extend the holiday celebrating.
Then for New Year’s Eve we went to Kevin’s sister Colleen’s house. She and Uncle Mike cooked up some sauerkraut and kielbasa, a New Year’s Pittsburgh tradition. Karl had a good time again playing with his cousins Jessie and Therese. He just loves those girls. They have an air hockey table in their basement and Karl mastered it pretty quick. He couldn’t beat the girls but he sure had fun playing. We had to literally drag him out of there.
Yesterday we went to the Up Kids Christmas party. Up Kids is the
Down syndrome support group I helped start just after Karl was born. We had a smaller than usual turnout this year but it was still good to see all our friends and to see how much the kids have all grown.
My health has been giving me some problems. A couple weeks before Christmas I had what I thought was a small bout of the stomach flu. Then New Year’s day it returned. I was really sick. The nausea and vomiting stopped by the next day but I was left with a terrible pain in my upper abdomen. I went to my gastroenterologist on Wednesday and she said she suspected gallbladder. She ordered some tests but before I could get them I ended up at the ER Thursday. They tested me for gallbladder problems but everything looked normal. We now suspect that my ulcer is back, which isn’t too surprising given the level of stress and overindulgence over the holidays. I will keep you posted.
Those of you who answered my request and prayed for little Alexia should be pleased to know that she conquered her infection and other problems and is now back home. Her family is preparing for a move from South America to the states so that Alexia can get her bone marrow transplant now. Please pray that all goes well there.
Unfortunately just before the holidays we lost one of our online friends, sweet Alexandra. She was a beautiful courageous young lady. Please remember her and her family in your prayers.
I wish all of you a safe happy and healthy New Year and don’t forget
CHEMO IS NIX IN 2006!!!!
Judy

Sunday, December 4, 2005 8:30 PM CST

Hello Good Friends and Family,
We have been busy, busy, busy here at the Pamer's getting ready for Christmas. Since Karl has been so healthy and seems to plan on staying that way (knock on wood) we are going to try and make this a fabulous Christmas. We put up some fun decorations outside and we decorated every room in the house. Karl and I went over all the toy catalogs and made his list for Santa. We strung lights all over his room and put his tree up there in his window. He is just so jazzed.
Last Thursday he had a trip to clinic and it was pretty uneventful health wise. He handled the chemo and the IVIG just fine. His counts were good again.
HG – 13.4
PLTS – 246,000
WBC – 3.4
ANC – 2200
However we did get some sad news, our beloved Nurse Rose who has been taking care of Karl since his diagnosis, is leaving Children's to work at a hospital closer to her home. We will miss her so. Her last day was Friday so this was our last time to see her. It was so hard to say goodbye. How do you thank someone who has literally been a blessing from God during one of the worst times of your life. Rose was always so kind to Kevin and I. Busy as she was she always had time to explain everything. She held my hand and dried my tears more times then I can count. Rose has been an oncology nurse for over 20 years so I knew I could trust her knowledge and advice. And she was so patient and understanding with Karl. I know he will miss her. Rose will always have a special place in our hearts and we wish her much happiness cause she sure has earned it, Thank you Rose, I owe you a debt I can never repay.
Please remember in your prayers little Alexia who is in a real battle right now. They say that Christmas is the time of miracles. I hope that is so because little Alexia could sure use one right now.
Take care friends and during the hustle and bustle don't forget the reason for all the celebration. Be kind to one another and pray for all the little ones.
Judy

Sunday, December 4, 2005 8:30 PM CST

Monday, November 21, 2005 4:33 PM CST

Hi Family and Friends,
Sorry to once again be so long between posts, but no news is good news in this case. Karl has been doing just fine. He recovered from his mystery Halloween illness and really has been very healthy since. He has had a nagging nighttime cough that I suspect is due to his reflux. He has had a big increase in appetite too so I have to suspect that he has extra stomach acid down there. When you consider the amount of toxic drugs that this poor kid has to swallow it is amazing his stomach isn’t worse.
It sure hasn’t slowed him down any. Week before last he came home from school with a first place medal in Early Soccer Skills now today he showed up with a first place medal for swimming. We just couldn’t be prouder. Think about the fact that just over 2 years ago when he was diagnosed he quit walking for 3 months. It was a long hard struggle to get back on his feet. The chemo would often give him such pain in his legs that it hurt just to try. But he kept trying. He is still behind with his physical ability but working so hard to get better. I guess those medals are proof of that.
Last week we went to his school open house and all his teachers and therapists told us about how motivated he is and how hard he works. He loves to learn. At home he will sit with one of us for quite a while working on reading, spelling words or math. Math is usually Daddy’s department. Mommy’s not even allowed to touch the checkbook. But math sure seems to be Karl’s thing. He does great with all his addition. Karl can now spell the days of the week. A fact I found out when I caught him writing them on his bedroom wall with a marker. How do you yell when he spelled all seven of them correctly? Besides it was a washable marker.
We had our first snow here the other day and Karl was thrilled. He knows that snow means Christmas is just around the corner. He is so jazzed for Christmas this year. It will be our first in our new house I am going to make sure that it is extra special.
Please remember in your prayers Libby, Alexia, Keegan, Ray, and Alex who have all relapsed recently and our now facing more intensive treatment and in some cases bone marrow transplant.
I wish all of you a happy and delicious Thanksgiving. Take care and God Bless,
Judy

Thursday, November 3, 2005 6:18 PM CST

Hi Family and Friends,
On Monday the school called me to come pick up Karl because he got sick at lunch. When I got there he was sleeping in the nurses office. He woke up and looked white as a ghost. I took him home and he fell back asleep, then slept for another 2 hours. He woke up hungry and ate some soup and crackers. He seemed fine but then at dinner got sick again and wouldn't eat. So no Trick or Treating for Karl. I even asked him if he just wanted to go to a couple neighbor's houses but he just wanted to lay down and watch TV. Later he perked up and asked for his dinner so I re-heated his steak and he ate the whole thing. I kept him home from school the next day just to be safe but he was fine all day and has been ever since.
We had a long day at clinic today but things went about as well as we could ask for. Kevin went with me today because Karl had an LP (lumbar puncture). Even though they upped his sedation I know he felt it more than he has in the past. I don't know why but he flinched and he cried when the needle went into his spine. Usually he is so out of it he doesn't notice. But he calmed down and started to phase out so the rest of the procedure went smoothly. His spinal fluid looked clear which is a good sign and he didn't seem to feel it when she injected the Methotrexate (chemo drug) into his spine.
After the LP they started his pentamidine infusion. Pentamidine is the antibiotic he gets to ward off pneumonia. It takes an hour to infuse. Karl slept the whole time. Next he got his Vincristine (chemo drug)which is just pushed in and only takes a few minutes. After that they started the IVIG (immunoglobins). Since he got so sick on them the last time they gave him and anti-nausea drug first and started the infusion slowly. They upped the infusion rate about every 15 minutes and he handled it just fine. He slept the whole time we were there. We actually had to wake him up to tell him it was time to go home.
His counts today were great
ANC - 3400
HGB - 13.4
WBC - 4.5
PLTS - 238,000
Dr. Sarah upped his chemo a little more since these looked so good.
He hadn't eaten all day so we stopped at "old Mcdonald's" on the way home for some fries which he only picked at. At home I was starting to cook the traditional clinic day meal of Baked chicken and Mashed potatoes when Karl informed me that he wanted Tacos instead. He is usually very insistant about baked chicken on clinic days, I was shocked when he wanted something else.
I Wanted to make sure that Karl understood who makes the rules in this house and besides I had already thawed the chicken and didn't have any meat for tacos thawed. Plus I had already assembled everything for the chicken meal, It was time to put my foot down. So, of course threw the chicken back in the fridge and sent Kevin to the store for taco meat. Karl ate two tacos and some corn and is now a very happy little King.
Please remember our friend Victor in your prayers. After spending several months inpatient going through a bone marrow transplant and battling the after effects the poor little guy has found himself back in the hospital with more problems. He is such a fighter I know he will be fine but I ask you to pray that he gets back home, where he belongs, healthy and happy, very soon.
Also remember our friend Keegan, he was diagnosed around the same time as Karl and they just found out yesterday that he has relapsed.
Thanks for checking in on Karl, leave him a note so he knows you were here.
Take care and God Bless,
Judy

Monday, October 24, 2005 1:56 PM CDT

Hi Everyone,
Things are going well here. Fall has come to PA and the view from our new house is just amazing. The fall colors on the trees across the river reflect beautifully in the water.
Karl has been doing terrific. He got to go on a class field trip to the pumpkin patch where he had a wonderful time. He is really loving school this year and is progressing wonderfully.
We are scheduled for a clinic trip first week of November. Karl will get an LP and IVIG so it should be a long day. However the good news is that the countdown has begun. Barring complications Karl will be done soon and we can count on one hand the number of LPs he has left to endure.
Take care and God Bless,
Judy

Friday, October 7, 2005 6:46 PM CDT

Hello everyone,
Sorry to once again be so long between posts. We have had a lot going on so I will start first with Karl's health.
His appointment with Dr. Chi the ENT went great. Karl's ears were infection free but had quite a bit of wax. Wise Dr. Chi decided to forgo cleaning the wax out so Karl did not have to go through any torturous procedure. He was so happy when we left.
Karl and I have both been fighting colds. Karl’s cold tapered off into just morning congestion and a cough. Mine however developed into severe sinus infection and a mild case of bronchitis. Then the medications I was taking for that made me very sick. I am feeling much better now.
Last week the clinic called to say that Karl's Quigs(quantitive immunoglobins) were still low. The were 387 and should be above 500. He had gotten some IVIG (IV immunoglobins) right after they tested him last so they wanted me to bring him up to see where his numbers were. I took him last Friday. Nurse Rose had to access his port to draw enough blood for the test but she then "took tubie right off and threw it in the garbage." Karl was thrilled that this too was a fairly painless and quick trip.
Unfortunately Karl's Quigs were still low, 484. So when he had chemo yesterday (Thursday) he got more IVIG. Since he had handled his previous two doses of IVIG so well we decided to up the rate of infusion in order to get it over with. The IVIG takes 3 hours to infuse. As soon as we upped the rate Karl started getting very sick. He threw up several times. As luck would have it the wonderful Dr. Sarah popped in just then and so rushed out and wrote an order for some anti-nausea medicine. Nurse Rose turned down the drip and Karl was better quite soon. Dr. Sarah said that it is likely that Karl will have to get the IVIG on a regular basis. Either monthly or every other month. She at least would like to keep it up during the cold and flu season and I have to agree with that logic. This means our nice quick routine monthly clinic visit just turned into a 6-hour day. Oh well, the good news is that baring complications Karl should only have about 10 more chemo treatments. He should get his final treatment on August 26, 2006. Chemo is nix in 2006!!! I am having t-shirts made.
Today Karl woke up and told me his tummy hurt and he wanted to stay home with me. I woke up with a violent migraine and had thrown up earlier. I thought Karl might just be playing hookie because he was worried about me and since he had such a traumatic day yesterday but not so. He had an explosive BM in the afternoon. Trust me when I say explosive, I spent about an hour scrubbing the bathroom. I called the clinic and they don’t think that was linked to the IVIG. They said it could be stomach flu, which is going around. Karl seems fine now. He didn’t want to eat most of the day but then had some soup and crackers. He ate some supper too and seems fine. I think the BM might have just been a side effect of the Vincristine, which is one of the chemo drugs he got yesterday. It usually constipates him but it has also been known to have the opposite effect.
More good news – Karl’s counts were awesome.
ANC – 4900 (yes, 4900)
HGB – 12.6
PLTS – 265,000
WBC – 6.3
These numbers were so good that Dr. Sarah decided to raise his chemo, which made me very happy and nervous at the same time.
Tonight was supposed to be our big night out to celebrate our 10th anniversary but Karl being sick combined with my earlier migraine put a stop to that. Karl was going to go to Grandmas and we were heading to a nice romantic restaurant. Instead we had Wendy’s at the kitchen table. It tasted pretty good and at the end of the day I am just grateful that we were all happy and at home together. Home is just the best place to be.
God Bless,
Judy

Thursday, September 15, 2005 3:57 PM CDT

Hello Everyone,
I know, I know very long time between updates. Now that vacation is long over and our big move is complete I finally had time to upload some pictures and update this journal.
The vacation was indeed fabulous but unfortunately we did have to jump right into the big move. I know that everyone who has ever moved has said this before but I never dreamed we had SO MUCH STUFF!! I finally got tired of unpacking boxes and shoved the rest into the basement. It sure was a reality check to find myself whining about how much stuff and to then turn on the TV and see all those poor people in the south who now have nothing. Though they sometimes seem few we should all count our blessings everyday.
And speaking of blessings Karl is doing great. He is back to school and just loving it. This year there are five kids from Up Kids, our support group, in Karl’s class. How great is that? Karl rides a new bus. Not a big yellow bus, this one is a van,which Karl was disappointed in but he gets to ride with his friend Libby so that makes up for it. The ride is also a little shorter so that’s a plus too.
Karl’s health has been great. He had a clear LP the day before we left on vacation and a treatment last week. He breezed through both, he is getting to be such an old pro. Sometimes I sure get sad when I think that needles and drugs and pain have become routine for my sweet little boy but I am grateful that he takes it in stride. Karl got more IVIG (immunoglobins) with his last treatment too. That will help if he starts getting ear infections again. He has an appointment with Dr. Chi, the ENT tomorrow but it is just a check up to see how things are going. Keep those prayers coming.
Karl just seems to love the new house. His room is fabulous and has a terrific view. I expected a little sadness at leaving the old place behind but so far so good. I will post pictures of the new house, the view and Karl’s room next time.
Until then those of you who live close and even those far away are always welcome to stop by. Please remember to pray for all those down south and also say some prayers for our online friends Alex, who just relapsed and for Devon who is in a battle for his life against a dangerous pneumonia. These amazing strong kids humble me with their courage and their determination.
Take care friends and God Bless,
Judy

Thursday, August 25, 2005 8:50 AM CDT

Hello to all our Friends,
Well as promised here is all the latest info on our vacation and move. I don’t have any pictures yet. I don’t like digital cameras so I have to wait for the film to develop. I should have them by tomorrow but probably won’t get them posted for at least 2 days.
Our vacation was just fabulous. We left early on Friday the 12th and arrived in LA about midday. Karl was just great on the plane. He played with Grandma and me the whole way. For the flight home he slept the entire time. We spent the first night at my sister’s Betsy’s house in Cheviot Hills. I was great to see her and Sophie, my niece. Betsy’s husband Craig was away in Canada filming a movie, but we did get to see him later in the week. The next day we left my Mom with Betsy and we headed to Mission Viejo to stay with my sister Nancy and her husband Bob. They have a fabulous home with a big pool. We weren’t there more than half and hour before Karl was in the pool. He just loved swimming everyday. I wish you could have seen how happy he was in that pool. When Mom, Betsy and Sophie came down a couple days later he really came alive. He just paddled around in his little donut smiling and laughing. He watched Sophie sneak up on us when we were in the Jacuzzi and dump buckets of cold water on our heads (yowww!). After that no one was safe. Sophie is such a great swimmer. She reminded me of myself. I think I spent everyday every summer in my bathing suit.
We had some great meals while there. Our first night Uncle Bob cooked Karl’s favorite, Steak. I think Karl ate more than anyone and that includes his giant 6’4” cousin Steve. The nest night Bob made Beer Butt Chicken and it was delicious. We had a special tea party while down at Nancy’s to celebrate Betsy’s birthday. We made scones and cucumber sandwiches and lots of other yummies. It was such fun.
Nancy and Bob’s daughter Kristy and her husband Adam came to dinner a couple of nights and it was great to see them. When we were there last they had just bought a house and Kevin and I remember feeling so sorry for them because it needed so much work. Well you should see that house now. They have done a tremendous job of fixing it up, inside and out. The yard looks great and the interior is just beautiful. Those kids sure are hard workers.
We drove down to Temecula to visit Bob’s dad and I got carsick on the Ortega Highway. Here I was worried about Karl and he slept the whole way. If any of you have ever been on the Ortega Highway you will understand.
We headed back up to Betsy’s house later in the week. She has a beautiful home and Karl had lots of fun playing with Sophie’s old dollhouse. We got to watch Sophie take a Karate lesson. Her sensei even let Karl into the dojo. Karl had a great time watching Sophie kick and jump. There was another student practicing moves with a fan. It was pretty cool for Karl to watch given that Mulan is his favorite movie. We were very proud of Sophie. The day after we got there she underwent a test to get her Green belt and passed (of course). She is pretty amazing at this karate. She and Kevin also spent a lot of time playing catch and shooting hoops.
Betsy also cooked some great meals for us. We had Karl’s favorite, tacos, and her famous chicken Parmesan. Our last night there she made us a delicious brisket. Karl really enjoyed that.
Karl also had a great time getting to know Nancy’s dog California and Betsy’s dog Buster. He would just follow them around everywhere. We took both dogs for walks, which is still Karl’s favorite thing to do. While at Aunt Betsy’s we even walked down to the playground and Kevin swears that Karl remembered the way from 3 years ago. Aunt Betsy and Sophie also took us to a super playground in Beverly Hills.
We had decided early on that we weren’t going to do any touristy things. This vacation was going to be all about family. I am so glad we stuck to that plan. Karl has some terrific Aunts, Uncles and cousins and I am so glad that he got to know them all a little better.
Two days before we left we were informed that the people who were planning on buying our house were backing out of the deal. We had already booked the movers for Sept. 6 and had started to pack and move a lot of our stuff. They backed out because the inspector found termites under the crawlspace and in the yard. We had them treated while we were gone and got a 5year guarantee. Another guy put in a bid while we were in CA but then he backed out too. Apparently as soon as his ex-wife found out he was buying a house she filed for more child support and then he couldn’t afford it. Finally we got an offer that stuck. We will be moving out on September 6th closing on September 7th. It sure was frustrating dealing with all this while so far away but now we can move on, pun intended. We are going to move all of our small stuff ourselves and the movers will handle the furniture and big items. I have already started taking boxes down to the new house. Karl and I packed up most of the stuff from his playroom and will take it down today. He seems to understand what is going on and I think he is pretty excited. Karl is starting back to school on August 30th, he is very excited about that.
I probably will not post until after the move. Karl is scheduled for chemo the day after the move. He still has a mark around his port from the infiltration and is very sensitive about it. He also seems to be having some allergy problems that I am hoping don’t cause congestion and then ear problems. Those are really the only health concerns I have form him right now. Talk to you in a couple of weeks. Then I should be writing from our new address.
Take Care,
Judy

Tuesday, August 23, 2005 10:15 AM CDT

Hi Everyone,
Sorry to have been so long between updates. We just got back from a fabulous vacation in California. We were visiting my sisters and thier families. We had a wonderful time. I think Karl enjoyed it most of all. I will post the whole story in a day or two after I get caught up here at home. We also resold the house while we were gone and will be officially moving on September 7th. Karl starts school on August 30th. I sure have lots to do. More later and new pictures on the way too.
Love,
Judy

Thursday, July 21, 2005 6:38 PM CDT

Hello Family and Friends,
Some of you may recall my mentioning that my sister Nancy and her husband Bob purchased a beautiful home on the river in my home town of Beaver when they were in from California in May. They plan on moving in when they retire. Well since that is a ways away they have offered to rent it to us until then. This is a great opportunity for us. The house and yard are beautiful and there is a tremendous view of the river. Plus it is a much safer neighborhood and a better school district. Not to mention that we will now only be 5 minutes away from Karl's school so no more 45 minute bus rides. We have put our house up for sale and if it sells soon we will be moving.
Karl is very excited. He loves the new house, especially the yard. It is going to be hard to leave his new playroom but we can take most of the stuff in it with us. Karl will have a great room with a beautiful view of the river from his window. He was counting boats last time we were down there. There should be plenty of room for all his new stuff.
Kevin and I are also excited because this is a definite upgrade plus we both feel that we can leave some old baggage behind and start working on new happy memories for our family. We are so grateful to Nancy and Bob for giving us this opportunity.
Of course I have been busy, busy, busy. Thank God Karl is in Summer school. I had to clean up this house so we could show it to prospective buyers. We also leave for our California vacation soon so I have been busy getting ready for that. And I used to think I had a lot of stress with my job!
Karl's health has continued to be good (knock on wood). The infiltration that he had from his last treatment is almost completely gone.
I had a physical and some bloodwork and my sugar is borderline high so I have to lose more weight. I just recently lost 8 pounds but my doctor wants me to lose 10 more. This is good incentive to keep up the diet and the working out.
Kevin has been working some major overtime and it has been so hot. Poor guy is just drained when he comes home. But being the super Dad that he is he still plays with Karl every night.
Hopefully by the time I post again we will have gotten an offer on the house and just like the Jefferson's we will be movin" on up!
Take care and stay cool,
Judy

Thursday, July 14, 2005 1:55 PM CDT

Good news to report. We saw Dr. Chi yesterday and it looks like the ear infection is finally gone. Karl's ear has been discharge free for about 10 days. He has been off the antibiotics for 6 days and his ear is dry. We probably need to think about having the tubes put in again to prevent another long ordeal like this one. This time we will get the kind of tubes that don't come out easily. Of course this can wait until the onset of the next cold and flu season.
Karl had chemo today at the clinic. Just Vincristine and Pentamidine. Pretty routine except when we went to deaccess his port the nurse saw that the needle must have slipped out a little during the infusion so Karl had what she called an infiltration. The meds leaked into the surrounding skin. The whole left side of Karl's chest was red, swollen and sore. He didn't complain much. They put a hot pad on it for half an hour then sent us home. The nurse said that the meds will just eventually absorb into his system. I just had to watch to make sure the swelling went down which it has already begun to do. It doesn't seem to be hurting him much either.
Karl's counts were good today:
WBC - 2.6
HGB - 13.3
PLTS - 210,000
ANC - 1600
These are all in the range we want them to be for the phase he is in.
We are getting very excited about our upcoming trip to California. I can't believe it is only a month away. We practiced this week at living with warm weather by turning off our air conditioner during this hotest week of the summer. Just kidding, we didn't turn it off it turned itself off. This happened on Sunday and of course when I called the store where we bought it they couldn't send someone until Tomorrow (Friday). Plus when I explained to them that the problem seemed to be with the breaker(which they installed with the unit) they explained to me that anything electrical was not covered in our service agreement. We had a similar problem with another appliance we bought at this same store. I don't want to name names but just let me say that when we were kids and we would see this store's name on our Christmas packages my Mom used to tell us that it stood for "Santa's Elves And Reindeer Shop." With the good help of our friends Steve and Augie we now have air again and SEARS (oops, I mean Santa's helpers) will be coming out tomorrow to check the unit to see if it was causing the breaker to go.
We do have some other big exciting news but I won't give you the details just yet. Check back in a couple of days and I will post more. don't forget to leave Karl a message in his guestbook.
Take Care and God Bless,
Judy

Friday, July 8, 2005 5:55 PM CDT

Okay folks it's finger-crossing time again. Tonight Karl has officially completed his 10-day course of antibiotic and so far no sign of any ear discharge. If tomorrow he wakes up and there is goop in his ear you will hear me screaming all the way in California.
The antibiotic he has been on, called Linezolid, just tastes awful. Karl has had to take 2tsps twice per day and it is a struggle to get it down every time. Most of the time he just bites the bullet and swallows it down but sometimes he gets so frustrated that he literally runs and hides. The Linezolid is super strong and has given him diarrhea. This could lead to a complication called C-Diff, which results from the antibiotic killing off all the good bacteria in your colon and causing a form of colitis. I have been monitoring Karl closely for this and so far he is showing no signs. We have been giving him smoothies to drink in the mornings so that he gets more of those good bacteria in his system. Also we have been feeding him lots of steak, red meat usually plugs him up. So far, so good.
The good news is that we had his counts done on Wednesday and they are up since last week. His ANC jumped up from 1100 to 1900. This is great news because the Linezolid will also cause counts to drop. I was concerned about this because Karl is scheduled to start summer school on Monday and if he was neutropenic I was going to keep him home.
He handled the IVIG transfusion really well, which is also good news because he will probably need it again at some point in his treatment. It should help with the battle against the ear infection too. If the ear infection returns then we are looking at very limited options. Karl will either have to have his port accessed for 5 days here at home so he can get IV antibiotics or we may have to consider surgery to have the tubes put back in again. He hates having his port accessed at home and the last surgery was pretty tough on him. It is hard to even consider the surgery since the tubes fell out so soon after the last one. I hate to put him through it again if it will all be for nothing.
On the lighter side we had a really nice holiday week. On Friday we went to my Aunt’s house for dinner. My cousin Ellen, who is a breast cancer survivor, was there with her husband and kids. Karl enjoyed playing with the kids and Ellen gave him a really cool bubble maker that he just loves.
Then on Sunday we finally got to meet Karl’s angel Irene. We were matched up with Irene through a wonderful organization called Cancer Warriors. She has been a special friend to our family via e-mails, letters and packages ever since. It was so special to finally get to meet her face to face. She was in town to participate in a walk that benefits Children’s in Pittsburgh so we got to meet up with her the night before. Irene was just as wonderful in person as we expected. Karl really took to her. On the way home I asked him if he liked Irene and he replied, “Irene loves Karl” which is his way of saying yes very much.
My birthday was on Thursday and it was made very special by my mother who took us out for steak dinner. Naturally Karl was delighted. He ate an 11oz sirloin all by himself. I think the waiter thought we were crazy when we ordered it for him. After dinner we went back to Mom’s for a delicious 4 layer Boston Cream Pie, Yummy! There goes the diet. I guess I’ll be spending an extra hour working out tomorrow. Matter of fact I think I'll just make it 2 hours and go have another piece.
I promise to post some new pictures real soon. Remember to pray for dry ears!

Take Care and God Bless,
Judy

Tuesday, June 28, 2005 6:40 PM CDT

Hi Everyone,
Well it is the return of the dreaded ear infection. Karl went off the ear drops on Tuesday and his ear stayed dry until Friday at 3:30 when I noticed that it was full of goop. Of course that late on a Friday you can't get a hold of the doctors, Murphy's law at it's best. Just 1/2 hour sooner and I could have reached Dr. Chi. So, I put him back on the ear drops for the weekend and called Monday morning. Karl will now be on an oral antibiotic that should do the trick (fingers crossed ,please).
On Karl's last chemo day they did a test on his Quigs (quantitive immunoglobins). Unfortunately they are low. Anything below 500 is bad and Karl's are at 347. This is pretty routine for a kid in chemo. The chemo kills off all the built up immunities. Karl is scheduled to get IVIG (intravaneous immunoglobins) on Thursday. They were going to wait and give them on his next chemo day but with the return of the ear infection they decided to move it up. This should aid in getting rid of that ear infection too, as a matter of fact it is probably why he has had such a hard time beating it.
Dr.Chi wants to see Karl on Friday to suction out his ear. Please pray that Karl does not throw up on me this time. Climbing into a hot parked car then driving 1hour to get home with that smell on your clothes is no day at the beach.
Karl has been doing great. He is just full of pep. The downside is that he seems to be full of pep all night long. He has been up and down everynight since his last 5 day steroid pulse which ended on the 20th. I feel like a walking zombie.
I have been working out with weights everyday in an effort to lose weight before our California trip. Karl comes down and works out with me. I wish you could see him doing the warm up and stretching excercises. It is the cutest thing. I went down this morning after only about 3 hours of sleep and literally collapsed. I have no idea why he is not sleeping unless it is connected to the ear. I am going to try some pain reliever tonight.
As I already stated I am not getting much sleep so please overlook anything in this entry that does not make sense and don't count the typos. I will update after both his appointments the end of this week.
Take care and God bless,
Judy

Monday, June 20, 2005 9:54 AM CDT

Hello Friends and Family,
Last week was certainly one of those up and down weeks. I came down with a bad stomach flu on Wednesday night. Karl was scheduled for chemo Thursday morning so his Dad had to call off work and take him. I stayed home feeling very guilty because it was the first time I have missed any of Karl's appointments. Dad handled everything just fine though. Karl's counts were great so they even upped his chemo a little bit which makes me very happy.
Friday morning Karl had an appointment with Dr.Chi the ENT. I was feeling better so I was able to take him. Karl got pretty worked up when I told him where we were going and by the time we got there he was in a bit of a state. He just hates having his ears suctioned. Well I think the combination of stress and the chemo from the day before did him in because as soon as we got into the exam room he threw up all over me and the floor. The nurse was so nice and understanding. She cleaned up the floor and brought me some cloths and towels to clean up myself too. Then Karl has some explosive diarreha. Luckily he was wearing a pull-up because he sometimes has accidents at the doctors due to stress. I sure wasn't expecting this kind of accident though. I hadn't even brought a fresh pull up or wipes into the office with me. Dr. Chi was so nice. He quickly looked in Karl's ear and much to my surprise said that the ear wick he had put in there last week was still in place. He pulled the wick out, much protesting on Karl's part. Then sent us home. I had to change Karl in the car and that was a real adventure, I won't go into detail but let me just say "What a mess." Once we were in the car and heading home Karl really perked up and seemed fine. I was glad because I was starting to worry that he was coming down with the same stomach flu that I had.
After the appointment we went to my Mom's house for a lunch with my cousin Larry and his wife Julie. They were here visiting from Georgia. Karl really enjoyed his visit with them. I think he liked looking at the pictures on Larry's camera. I have had to explain to him several times since that ours doesn't have pictures on it until we get them developed. What dinosaurs we are.
We had a wonderful day yesterday for Father's day. My Dad and his wife Lucy and Kevin's Mom and Dad and his Uncle Jack all came to dinner. While sitting at the table Karl kept saying "2 Grandpas, 2 Grandmas, and one Uncle Jack". He loves having family over.
Today is a very bittersweet day for our family. It is the 2 year anniversary of Karl's diagnosis. On one hand we are so glad to have 2 years of this nightmare behind us. We know we are so much closer to his cure than we ever dreamed we would be. However this date brings back so many memories. It is the anniversary of what was truly the worst day in our lives. And even though we have come so far we also know that Karl is not cured. Being in remission does not mean cured. They won't consider him cured until he has been in remission for at least 5 years. That's 3 years from now. 3 more years of worrying about every symptom he presents, frightened that it means relapse. I know my worries won't end in 3 years either, they may lessen but the monster that is cancer will always be lurking in my thoughts and nightmares. My prayer is just that Karl will remember very little of this time and that he can go on as a happy and healthy kid.
I guess on this date I should also say Thank you to all of you, our friends and family who have helped so to make this tough journey a little easier. People always say to me "I don't know how you do it", well the answer is - with a lot of help and a lot of love.
Take care and God bless,
Judy

Friday, June 10, 2005 8:01 PM CDT

HI Everyone,
Well we make yet another trek to see Dr. Chi, our wonderful ENT and yes Karl still has an ear infection. The doctor put in some ear wicks and we are back on the drops. So far so good, no sign of any drainage. We go back next Friday so I will post then. Meanwhile keep your fingers crossed.
Karl finished his first year of school on Wednesday too. I think he was a little sad about it. I am so happy to have him home here with me. I knew I missed him but I just didn't realize how much. He is of course climbing the walls. I am trying to re-adjust my schedule so I can devote more time to him. He is keeping up with his school work so far. He was practicing writing his letters and numbers today and he read me a book this afternoon.
Our vacation is now official. We booked our flights and are heading to the west coast in August. All you Californians get ready for the Pamer family invasion.
Take care and God bless,
Judy

Wednesday, June 1, 2005 6:44 PM CDT

Hi Family and friends,
Not much new here to report. Karl is still battling the infection in his left ear. I am really getting frustrated. Every time I think it has cleared up more goop starts draining out. Pour kid is so sick of getting drops in his ear. And I hate the fact that I have to give him antibiotics everyday too. He already gets 6 different meds shoved in him everyday.
His allergies have been acting up too which meanns that the ear drainage could increase. Poor guy is doomed in the allergy department. Both his Dad and I have them bad and this year they are really bothering the whole family.
I fell down our cellar steps yesterday. I bumped down about 5 steps on my rear end. Amazingly enough I seem to be fine except my index finger on my right hand is swollen and very sore. Could be broken. It sure hurts to type so please excuse the typos.
Well that concludes the whining portion of this entry.
WE had a great weekend. Aunt Colleen, Uncle Mike and cousins Therese and Jessica came down Sunday for a cookout. Karl just loves those girls. He was hopping around all day waiting for them to arrive. He had such a good time playing with them. Even though both girls are older than Karl they always include him in everything they do. We played Tee-ball, tennis and basketball plus went for several walks. Karl was one tired boy by the end of that night. I think he over did it with his legs though because he was up most of the night with leg pains. I should have limited his activity a little but he was having so much fun. I had to keep him home from school on Tuesday because of the leg pain and lack of sleep. He was fine this morning though and was so anxious to go back to school. I don't know what I am going to do with him when school ends next week. He will be climbing the walls. I do have him enrolled in summer school but it doesn't start until mid-July. I would appreciate any suggestions from you more experienced moms on summertime activites since this is my rookie year.
Take care,
Judy

Thursday, May 26, 2005 6:49 PM CDT

Hello Everyone,
Not much to tell from this past week. Same old, same old. Karl still has an ear infection so we are waiting for the results of a culture to determine which anti-biotic will best fight it off this time. One of the students in Karl’s class came down with strep throat so I am a little worried that he will come down with it too. That’s one of those things that could be mildly serious. If he gets a fever it is a guaranteed trip to the ER and a possible inpatient stay.
Otherwise Karl has been very happy and healthy. He has so much energy anymore. We truly have the best kid. He never fusses about anything. He gets up every morning so anxious to go to school. Some days he literally runs to the bus. I wish you could see him peeking out the bus window waving good-bye and blowing me kisses. I have been getting good reports from his teacher on the progress he has made in school so far. He loves to show us his papers when he comes home. His reading is coming along amazingly. He read “Green Eggs and Ham” to me last night and I barely had to help him at all. He knew practically every word! I can’t believe school is almost over for the year. I going to have a hard time keeping him amused. I have started working out everyday so maybe I’ll build up the energy for what lies ahead.
Karl’s appetite has been wonderful. He cleans his plate at every meal. Tonight we had some delicious Omaha Steaks courtesy of Aunt Suzy and Uncle Jimmy. Karl ate 2 of them plus 2 helpings of French fries and a ton of carrots. I just don’t know where he puts it all.
Really good news is that my sister Nancy and her husband Bob just bought a second home here in Beaver. They live in California now but plan on living here part time when they retire. The house is just beautiful; it is right on the river in my hometown of Beaver. I can’t wait until they are living there. It will be just so cool to have a sister near by again. Karl will be thrilled to have his Uncle Bob in town too. He just loves playing with him.
It is time to start fundraising for the Light the Night walk which benefits the Leukemia/Lymphoma society and for the Buddy walk which benefits the Western Pa Down syndrome center. I will be hitting all of you up for contributions so if you see me coming, be prepared for the sales pitch. I will be forming a team again for the Light the Night walk this year. Anyone who wants to walk with us please please let me know. I didn’t know what to expect last year so I didn’t really pressure any of my team to actually show up at the walk. Well, here were all these teams with signs and large groups and poor Karl just had Daddy and me. I want to do better this year.
A big shout out to Karl’s cousin Chris. Chris is graduating from The School for the Creative and Performing Arts. We expect to see that name in lights someday Chris!
I hope all of you enjoy your holiday weekend.
Take care and God Bless,
Judy

Thursday, May 19, 2005 1:41 PM CDT

Hi Everyone,
We had a very good day at the clinic today. Karl's procedure went well and his counts were great.
WBC - 3.7
ANC - 2300
HGB - 13.3
PLTS - 306,000
Karl really handled his lumbar puncture better than I have ever seen him. He of course kicked up a big fuss when Nurse Rose accessed his port. I mean literally kicked, I have to buy that poor woman some shin guards. But he stayed calm for the spinal. He also stayed awake after, which was unusual. As a matter of fact by the time we left he was running down the hall of the hospital. We even stopped for lunch. I hope his next LP goes like this one. It is in August and we leave for vacation the very next day.
Karl's ear infection is still present. Dr. Sarah peeked in today and said it was still wet. It started draining on the way home too. But it is on the mend and with those counts I think he can lick it. She said to keep him on the ear drops for a while longer.
I hope all of you have a wonderful weekend.
Take care and God bless,
Judy

Saturday, May 14, 2005 10:16 AM CDT

Well the other shoe finally dropped. I knew things were going too well. Thursday night Karl started crying, something he rarely does. He was acting like he was in pain. He was holding his ear then his stomach. He kept saying that both hurt. I gave him meds for both but he was up and down all night crying quite a bit. He had several BMs and passed an awful lot of gas. He also kept gagging but never threw up. His stomach was empty though because he never ate his dinner so I imagine he didn't have anything to bring up. I found out that there are some stomach bugs going around his class. Why can't people keep their kids home when they are sick?? What is just a virus for their kid can be deadly to mine.
We were supposed to go on a field trip with his class to the Zoo on Friday but of course had to cancel. So once again Karl missed out on some fun.
By morning his left ear was full of goop. I am so tired of ear infections. Poor Karl is so tired of eardrops. Luckily though this infection is in the ear with the tube so we can treat it with the drops and may not have to resort to oral antibiotics. Karl still seems to have a lot of gas so I sure wouldn't want to put him on anything that would upset his tummy even more.
He wouldn't eat anything yesterday but that didn't stop him from asking for everything. I cooked him about 7 different meals and he only took a few bites here and there. I finally broke down and cooked him a steak. He ate the whole thing. We slept a little better last night but now this morning I have an upset tummy.
Would someone please stop this roller coaster and buy me a ticket on the carousel? I would love to just go round and round in monotonous circles. Boring and routine just sounds so good.
Hope the bugs stay away from your houses, have a good weekend. I will post after Karl's chemo on Thursday.
Take care and God bless,
Judy

Sunday, May 8, 2005 12:52 AM CDT

Hello Family and Friends,
Sorry it has been so long between updates but we have been so busy with our visiting family that I just haven’t had a chance until now. We had such a wonderful week with my sisters and their husbands. Karl’s little face just shone the whole time they were here. Last Sunday we had a nice family party for my Mom’s 75th birthday. It was so special. Each of us made a couple different dishes for the buffet and it was terrific. Then on Monday we went to a very nice restaurant to celebrate some more. Karl had a great time. He ate his 12 oz NY strip then part of Uncle Bob’s, then part of Daddy’s then some of Aunt Nancy’s filet. He was still asking for more but had to settle for finishing off his French fries and asparagus. You would never know that this kid is sick by the way he eats.
Karl enjoyed playing with his family so much. He insisted on family walks after dinner each night. I think they all enjoyed spending time with him as well. Although I do have to say they will all be grateful to never again hear the song “Let’s Get Down to Business” from the movie “Mulan”. It is Karl’s favorite and he plays it over and over.
Karl really fell for his cousin Sophie. He just followed her everywhere. If she would lay down on the floor, he would plop down on top of her. He is really going to miss having her around.
Karl’s health has been excellent. No sign of any ear problems. He is scheduled for a lumbar puncture and treatment on May 19th. I will post more about his health then.
Take care and God bless,
Judy

Wednesday, April 27, 2005 4:08 PM CDT

HAPPY! HAPPY! JOY! JOY!

Karl’s ears are fine! We just got home from the ENTs and He said that Karl’s ear was dry and looked good. Please God please let it stay that way. When I picked Karl up from school and told him where we were going he got so blue. He didn’t speak one word the whole way there. I had even brought him a taco for an after school snack and he wouldn’t touch it. But after Dr. Chi looked in his ear and said it looked good which meant no suctioning and no holding him down Karl just perked right up. He chattered the whole way home. Well, in between bites of taco, which he decided looked pretty tasty after all.
When we got home there was a package waiting for him from his “angel” Irene. It was some punch balls and a paddle ball and all kinds of toys. Plus a wonderful Tee shirt that she made for him with his name on it so of course he loves it. He is now busy playing with all his new stuff. Just one happy guy.
The sun is shining, the flowers are blooming, and tomorrow starts the arrival of all his Aunts (my sisters). So it looks like this might turn out to be a fantastic wonderful weekend. Karl sure deserves that. Hope your weekend is full of sunshine and promise too.
Take care and God bless,
Judy

Saturday, April 23, 2005 2:58 PM CDT

Hello Family and Friends,
Sorry to be so long between posts but it has been one heck of a week around here. As you know Karl had chemo on Tuesday, we switched from Thursday this week because of the school play. The chemo went well and Karl's counts were high.
WBC - 5.7
HGB - 12.2
ANC - 4300
PLTS - 307
The counts were all up because he is fighting infection. Karl is still on half dose chemo because they will not play around with the dosage until his counts are regulated. And his counts keep jumping up and down because of these constant infections. Plus now Karl is coming down with a cold. His oncologist said that we would talk about changing the chemo dose next month. Karl will go in on May 19th for a lumbar puncture and treatment.
Then on Wednesday we had to go to the Ear doctors again. Karl was still having discharge from that ear plus a little blood. The doctor said the blood was normal and he suctioned out Karl's ear again. Karl was not happy. Then the doctor examined the ear and said that the tube was still in place but that the ear still had a lot of infection. He told us to continue with the drops and to come back in another week. Well, on Monday Karl came home from school and his tube had fallen out again. He is still having drainage but no more blood. We see the ENT again on Wednesday. I will let you know what transpires.
The rest of our week was taken up with the school play. They did one show Thursday night, then one Friday afternoon and then one Friday night. Kevin and I went to the Thursday night show. It was wonderful. Karl was terrific. As you know he was Little Boy Blue, he wore a costume made by his wonderful, talented Aunt Betsy. I will post pictures of him in his costume soon. He looked like a little Tom Sawyer. He just aced his part too. As the narrator recites the poem, Karl walks out to the end of the stage and toots his horn. Then he goes over to the haystack and falls asleep. A little girl then comes out on stage. She and the narrator recite the "will you wake him, no not I" part and as she is saying her lines Karl sneaks up behind her and toots his horn again then says “not!” He was just too cute. The whole performance just blew us away. There were almost 100 kids in the show and they all did an amazing job. There was singing and dancing, it was tremendous. Mind you, every kid in the show has a disability. I only mention that because it was a fact you just forgot as you were watching because they all did such an amazing job. It was one of the best shows I have ever seen. I plan on buying a copy of the video and you are all welcome to come and view it anytime.
There are only 5 more days until the “Aunts Come Marching Home Again.” HURRAH! HURRAH! We can’t wait to see you guys.
Take care and God bless all of you,
Judy

Wednesday, April 13, 2005 5:17 PM CDT

We got back from the ENT's about an hour ago and the news is good, although Karl might not agree. Poor little guy, the minute he realized where we were he just got gloomy. The last 4 times he has been there he has had to have his ears suctioned out and today was no exception. Kevin and I went there today firm about not putting Karl through anymore surgery, at least for a while. So we were very relieved when Dr. Chi walked in the room and announced that he felt the same. Dr. Chi said he was going to just suction all the discharge out of the right ear and try to put the earwick in there again then treat the ear with eardrops. We agreed but after Dr. Chi cleaned out the ear he said that the hole left by the tube was still open and big enough that he could reinsert the tube right there in the office. He said that Karl would feel pressure but no pain. We decided to give it a try. The tube went in and Dr. Chi also placed the earwicks in the ear canal so that any discharge would be absorbed and the drops could funnel down to the tube and go where they need to be. Karl carried on quite a bit. It took the nurse and both Kevin and I to hold him down. But once all was over and we were "back in the purple car" headed home he was happy. He had his favorite tacos for dinner and has been fine ever since.
I on the other hand have had a sick stomach and a slight headache for 2 days. I had some pretty intensive dental work done on Monday so I think that might be to blame. I hope I am feeling better by tomorrow. I have a lot to do because there are only 14 more days until "The Aunts Come Marching Home Again." Aunt Nancy, Aunt Betsy and Aunt Suzy (my sisters) and their spouses are all coming home for a visit. We are so looking forward to this.
Please start keeping postitive thoughts for us next week. Karl has chemo on Tuesday and then the big school play is Thursday and Friday. They do 3 performances, one Thursday and 2 Friday. Karl will start a steroid phase on Tuesday and I am very worried that Steroid Boy will show up during the play. From all reports that I have gotten he has done very well at practice. I just hope it stays that way.
Take care and God Bless,
Judy

Saturday, April 9, 2005 8:11 PM CDT

Just a quick update. Karl's recovery had been going smoothly until today. He had some small trouble with snoring at night but it was starting to subside. Then yesterday he was rubbing his left ear alot but last night I pulled a big scab out of it so I think that was causing the itch. Then today my Mother noticed that he had some discharge in his right ear. When I wiped it out I discovered the tube. There was some blood and pus in the discharge too. I called the ENT and he said that it is rare for a tube to fall out so soon but not unheard of. He said to just keep an eye on Karl and watch for signs that he is feeling sick or running a fever. We have an appointment on Wednesday. So far Karl seems fine. He is eating and playing and no sign of fever.
Now I need lots of prayers, some for Karl but most for me. I have decided to let him ride the bus to school starting Monday. I have been driving him to and from school each day but since he goes to a special school we are talking about a 20 minute drive one way. It is starting to take it's toll on me and with the rising gas prices on our wallet. I kept Karl off the bus because I didn't want him exposed to too many germs but there are only about 8 kids on his bus. I met the bus driver and the aide and they are both sweet caring women so I have no concerns there. Karl got to ride a bus to and from ice skating class and just loved it so I know he will be happy. The trick is going to be getting him up 20 minutes earlier each day so he can catch the bus. I'll let you know how we both do.
Take care and God bless,
Judy

UPDATE - Tuesday am
Karl's left ear is staying good but the right is still draining a little. We see the ENT tomorrow and I will post more then.
Yesterday Karl jumped right up on the bus sat in his seat and waved bye to me out the window, smiling the whole time. This morning the novelty wore off a little and he wanted me to drive him. But once the bus came he climbed aboard and waved bye, smiling the whole time. He is just the best kid ever!!

Thursday, March 31, 2005 4:18 PM CST

Hello,
It's a little past 4pm and we just returned from our trip to Childrens for Karl's surgery. We started out at 6am this morning. He was taken in at 8:45am and they called us to the recovery room at 9:45am. The tubes went in fine and they did have to remove some adenoid tissue that had regrown. The doctor said that they found pus and liquid in both ears so we feel very validated about our decision to go ahead with the surgery.
Karl came out of anthesthesia a little too soon. He woke up distressed and in some pain. I couldn't calm him down so the nurse gave him another dose of pain meds. Then he crashed for the next 5 hours or so. He would wake up periodically and drink a little juice then just crash out again. They will not discharge you unless he is alert and has drunk at least 4oz. We had to talk the NP into letting us go. I think they trusted the fact that we are very watchful of Karl and that we have been down this road numerous times.
Karl is sleeping now and I am heading in that direction myself. The doctor said he should be fine in a couple days and that he could return to school by Monday. He is such a brave strong boy. He has been through so much it was so hard to watch him endure more today. I am glad we were able to bring him home and hope that this will help bring life back to normal.
Please send out some prayers to our friend Donna, her daughter Molly and her whole family. Molly is also battling ALL and her father was killed in a tragic train accident. No family should have to endure that much and my heart is breaking for them.
Take care and God Bless,
Judy
Update on Karl - Friday Afternoon
Karl got up from his nap last evening and drank quite a bit of juice plus ate 2 scoops of mashed potatoes with gravy. He seemed to perk up quite a bit later on, 11:30PM, of course. However we all got a great nights sleep. Karl woke up this morning with a bit of a sore throat but ate some strawberry pancakes. He hasn't been too lively but has been busy with V-Smile. He sure loves that game.
Judy

Thursday, March 24, 2005 4:29 PM CST

Hello,
We had a very smooth visit to the clinic again. Mommy was smart enough to take along V-Smile and so the time went fast. Karl handed out our homemade peanut butter eggs to all his favorite people.
Karl's counts did drop but are still in the safe zone. This confirms the oncologists opinions that the jump we have been seeing was due to fighting off the infections.
WBC - 2.9
HBG - 12.8
PLTS - 252,000
ANC - 1800
Karl's oncologists see no problems with the upcoming surgery, and that's even after reading my 2 page typed list of worries, I mean questions.
Please remember to pray for our friends who are also battling this horrible disease. Especially Victor who is in the hospital with a fever and Kyle who had surgery yesterday.
Also a big ATTA GIRL to the girl with Karl's favorite name -Cali-Ali, who this weekend will be celebrating her 18th birthday, plus going off treatment FOREVER, and having March 28th named as Ali-fornia day by the Governator himself. Way to go Ali, you deserve it all and more.
If the weather cooperates we should have a very nice weekend. I wish all of you a very Happy Easter.
Judy

Friday, March 18, 2005 6:24 PM CST

Hello Friends,
As I posted yesterday I took Karl to see Dr. Chi, his ENT, today and we scheduled the surgery to place tubes in Karl's ears. Dr. Chi thinks this is the best thing and Karl's oncologists gave the okay too. They are also going to check his adenoids to see if they have grown back at all. If they have then they will remove them too. This will still be a very simple procedure and will be done outpatient. Dr.Chi said there would be a slight chance that we might have to spend the night.
The surgery is scheduled for March 31st. We will not be given the exact time until the night before. This is good timing because it allows for plenty of time to pass before Karl's oncologists re-evaluate his chemo dose. That is scheduled for May 17th. If Karl's counts stay high and the infection is all gone then they will increase his chemo. This will make me very happy. I have been nervous about him being on half dose for so long especially since his counts have been so high lately.
So keep your good thoughts and prayers ready for March 31st so that maybe we can finally put all these worries over ear infections to rest.
Hmmmmm, makes me wonder what's around the next corner. AS one of my favorite heroines, Scarlett O'Hara would say, "I don't want to think about that now, I'll think about that tomorrow.
Take Care and God Bless,
Judy

Thursday, March 17, 2005 12:04 AM CST

Hi Everyone - I spoke with the oncology clinic today and they gave the okay for Karl to have the surgery to have tubes put in his ears again. Karl has an appointment with Dr.Chi tomorrow so I am sure we will be scheduling the surgery then. His ears are still draining and I am anxious to just get this problem solved so hopefully we can schedule this to be done soon. I will post tomorrow or Saturday as to when.
Take Care,
Judy

Friday, March 11, 2005 6:25 PM CST

Hello -
Well we just got back from the ENT appointment and Karl has infection in both ears. Once again they had to hold him down so the doctor could suction out his ears. It took 2 nurses and me to keep him down. Poor little guy, he just hates being restrained like that. The doctor put ear wicks in each ear. He said they are like tampons (not kidding, his word) for the ears. They will soak up all the discharge and let the eardrops get in to work. The ENT also suggested that we think about replacing the tubes in Karl's ear pretty soon. I had talked with his oncologist about this last week but they suggested we wait until the cold and flu season ended to see if he really needed them. However the ENT today informed me that the reoccurring infections are damaging his eardrums and that it could start to affect his hearing. So now we have a decision to make. I will have to consult with his Oncologists again and see what their take is. It would probably not have to be an overnight hospital stay. The big risk would be any infection entering his blood. That would be very serious.
The ear infections are messing with his chemo though too and that is a risk. Karl has been at half dose chemo since he started his maintenance phase over 6 months ago. They wanted to up his chemo when his counts stayed high which they are doing. Only problem is that now we don’t know whether or not they are high due to the infection. So he is staying at half dose. The risk here is that not enough chemo can increase his risk of possible relapse. At this point I am leaning toward the surgery. I’ll let you know what we decide once I get all the opinions and facts.
Take care,
Judy

Saturday, March 5, 2005 3:18 PM CST

Hello Friends and Family,
Things are going pretty well here in the Pamer household. We had a wonderful time at the Up Kids (United Parents of Kids with Down Syndrome) party last Sunday. Karl got to see a lot of his friends and had fun playing with all of them. We got to do a lot of catching up with all the families we haven’t seen in awhile. I cannot believe how much all the kids have grown.
We had a big snowstorm this past week. Karl even got a day off from school on Tuesday. We went outside and played in the snow. We made a snow dinosaur from a kit that he got for Christmas (thanks Lisa and Mark). After it was built Karl must have decided that it looked more like a dragon because he kept calling it a snow dragon. That could be the influence of Mulan, which he has been watching quite a bit of. I’ll try to post a picture.
We are getting very excited because all my sisters are coming home in May to celebrate my Mother’s birthday. It will be the first time in quite a while that we are all together. The last time was about 3 years ago and Karl ended up with RSV and was hospitalized almost the entire time they were here. Not this time, no way, I am keeping this little guy healthy so we can really enjoy their visit.
Speaking of healthy Karl’s cold and cough is completely gone and his ears have been discharge free for 10 days now (of course, I am knocking on wood as I type this).
I took Karl to get a haircut yesterday. I had her do mine first and he watched. My hairdresser also happens to be one of the moms from Up Kids. She was very understanding and patient with Karl. He only cried a little. This was his first professional haircut since his hair grew back. He looks very cute, mine is looking pretty good too.
Karl has been wearing his big boy underpants for several days now. As most of you know he stopped going on the potty altogether when he was diagnosed. Then having to deal with drugs that made him pee all the time and drugs that constipated him and drugs that gave him diarrhea it has been a real uphill battle to get him retrained. He has been doing well with only a few accidents and I think this time around it will stick. Poor kid, I just wish there was just one facet of his life that was not affected by this d**n leukemia.
I shouldn’t complain because we have been very fortunate during Karl’s treatment. Some of our online friends are not having it quite so easy. Please pray for our friends Victor and Matthew who both recently relapsed and are now facing the monster all over again. Also say a prayer for our friend Kyle who has just had one complication after another and really deserves a break. Please remember all their parents as well, truly inspiring people, heroes, every one of them.
Thanks to all of you who have been posting lately. Karl gets such a kick out of seeing who signed his book and it is nice to know that people are thinking of us.
Take Care and God Bless,
Judy

Saturday, February 26, 2005 2:24 PM CST

Hello Everyone,
Things are looking up around here. Karl's ears have been goop free for 2 days straight and it seems all that remains of his cold is a lingering cough. He has been in fairly good spirits except for this morning when he woke up with a slight case of the day 2 steroid blues.
Karl was thrilled to get back to school last week. He just loves that place. We have exciting news too. Karl was cast as "Little Boy Blue" in the school play. We are so happy. Karl loves to perform. He has missed several practices because of all his recent illnesses but he has almost 2 more months of practice to catch up so we know that he will do great. Our guy always comes through in the end.
Karl had an LP on Thursday. He did pretty well. He still fights like crazy when they access his port. Poor Nurse Rose, I am going to buy that woman some shin guards to protect her from all the kicking. Mad as he was about that he was still good as gold when Dr. Sarah examined him. Not too surprising since he just adores her. When it was over and he was still so doped up he kept trying to tell me something. I finally figured out that he was asking for Dr. Wollman. He really loves his doctors. We stopped on the way out so he could say hi to Dr. Wollman. They upped the anthesthesia they use for the procedure and Karl was still out of it when we left so I had to carry him the whole way back to the car. We had to drive up in the snow and then had to park in the parking garage 2 blocks away. Thank God Grandma was with us so she could carry the backpack or I don't think I would have made it. Karl's counts were good.
ANC - 4100
HGB - 12.5
PLTS - 273,000
Dr. Sarah still did not want to raise his chemo dose yet because she felt that his elevated counts may be due to the fact that he is fighting off those pesky ear infections.
We did end up having to put Karl on the oral antibiotic as well as the new drops. His ears were still goopy on Thursday and Dr. Sarah recommended we go to oral. It must be working because we have seen no sign of discharge.
We are off tomorrow to a party with our support group, the UP KiDS (United Parents of Kids with Down Syndrome). Karl will get to see alot of his old friends. This group started over 5 years ago when all these kids were babies. It is just amazing to see how they have all grown and how much they have overcome. They are all truly special and I love to see them grow. I'll take some pictures and post them.
Take care and God Bless,
Judy

Saturday, February 19, 2005 10:23 AM CST

Hi Friends and Family,
Well this hasn't been one of our better weeks. On Tuesday Karl woke up with a bad cough and his "good" ear was full of goop. The peditricians office said the cough is from a virus that is going around and that he might have it for up to 10 days. His ear is another story. I took him to see the ENT yesterday and it is definitely infected. The good news is that the right ear which has been infected for several weeks seems to have finally healed. The ENT gave me a prescription for drops for this new infection and did a culture. I was glad he did not give us an oral antibiotic since Karl has had such a bad time with thrush. Karl has been having a lot of trouble sleeping, mostly because is so congested. All in all though he has been in great spirits.
I had a terrible cold last week followed by one of the worst migraines I have ever had. It even hung around for a few days. Kevin has been wonderful looking after both of us. He is a one in a million husband and father.
We had a bad scare Thursday night. I went down in the basement to do a load of laundry and the floor was covered with water. Most of you know that this was an ongoing problem for us for several years. We had a french drain installe that was supposed to take care of this. When I saw all the water I freaked because I was sure that Karl's new playroom was flooded. Luckily it wasn't and turns out the water was from our water heater which sprung a leak. So we went without hot water for a while and then our friend Paul the plumber came and fixed it. We even got lucky because the water heater was still under warrenty, but only by 2 months (whew).
Gotta go, Karl just informed me that he is hungry.
Take care,
Judy

Saturday, February 12, 2005 9:38 AM CST

Hi Everyone -
Things here have been up and down as usual. Karl has been doing much better but the day after his visit to the ENT his left ear started draining, this is the GOOD ear. I started putting the drops in that ear and it stopped draining. He has an appointment to see the ENT again in about 10 days. Other than that he has been fine.
He really enjoyed his Birthday dinner at the Texas Roadhouse. He ate his whole 6 ounce steak, about half of my 8 ounce and a big piece of Grandma's too. This kid loves his steak. He is starting to enjoy the restaurant experience. He just loves it when the waitresses make a fuss over him. He is such a flirt. They end up literally hovering around our table. We get really good service.
We had an Up Kids meeting after school on Wednesday and Karl got to see his friends Taylor, Hallie, Gracie, Turner and Sarah. The kids had a good time playing in the playroom. Karl really needs to spend more time with other kids. This darn illness has really set him back socially.
Karl also got a special birthday package Wednesday. It was from his Aunt Betsy, Uncle Craig and Sophie. They sent him lots of nice presents. His favorite by far though was the video that Sophie and her friend Maddie made for him. It is so cute, the girls do several dances to lots of oldies (Karl's favorites). There are two doggies in the video which makes Karl very happy and the girls wish him Happy Birthday, blow kisses and tell him they love him which brings out a big smile on his face. He has been watching this over and over since he got it.
Good thing something is keeping him occupied. I have been sick since Wednesday night wiht a terrible cold. Most colds are just a bother but this one has really put me down. Now I have to worry that Karl is going to come down with this too. I have used so much Purell in the past 2 days that my hands are red.
Please pray that Karl stays healthy at least through Monday. I don't want him to miss his Valentine's Day dance and party at school.
Take care and God Bless,
Judy

Monday, February 7, 2005 3:03 PM CST

Hello Again,
Karl is doing much better since my last post. The discharge from his ear is gone and we see no signs of the thrush but he is still waking up with crusty eyes. Otherwise he seems to be doing great.
We had a small party for him yesterday. His cousins Therese, Jessica and Erika were here. So was Erika's friend Emily. Karl's cousin Steve even drove down from college with his girlfriend Tessa. Karl took an instant liking to her and spent the first part of the day sitting with her. Then Grandma and Grant Aunt Nancy showed up so it was thier turn for a little attention. The rest of the day was spent in the playroom having fun. Lots of Karl's aunts and uncles were here too and it was a welcome break for Kevin and I to just sit and chat with family.
Karl got some wonderful gifts and had a wonderful time. I can't describe to you how good it feels to see him so happy. I will post pictures as soon as I can so you can see for yourself.
Tomorrow we go to the ENT at Children's. I feel so bad that he has to start his birthday out this way but we will take him out for steak and french fries tomorrow night. Please pray that this appointment goes well and that they don't want to admit him for IV antibiotics. I will post tomorrow as soon as I can.
Take care and God Bless,
Judy
special message to Gracie and Turner - we missed seeing you yesterday, Gracie we hope you feel better real soon so you can come over and play!

Tuesday,February 8,2005 10:48AM
Update:
We just got back from the ENTs and he said that Karl's ear looks good and he thinks the infection might be gone. We are keeping him on the antibiotic for 1 more week and then he will have a follow up visit in 2 weeks. His counts today were great.
ANC - 3800
HGb - 12.6
Plts - 273,000
WBC - 4.6
Looks like it will be a Happy Birthday after all, Now on to the Texas Roadhouse for "STEAK AND FRENCH FRIES!!"
Thanks for all the happy birthday postings, he is loving it.
Judy

Friday, February 4, 2005 6:13 PM CST

Hi Everyone,
Well it has been a real roller coaster ride around here lately. Wednesday when Karl woke up his eyes were both crusted shut. It didn’t look like pink eye but I kept him home anyway and made an appointment with his pediatrician. The pediatrician said that it was just a discharge from the cold that Karl has had for what seems like forever. However when the doctor looked in Karl’s mouth he saw the beginning of thrush. This was not too surprising either since Karl has been on mega antibiotics since mid-December. The doctor wrote him a prescription for Diflucan.
When I took it to get it filled the pharmacist said the doctor made a mistake with the dosage and I ended up having to wait about 1½ hours while they tried to get a hold of the doctor for a new prescription. Then once they had that we discovered that our insurance would only cover the generic which was not in stock. The kind pharmacist saw that I was about to crack and gave me 2 days worth of the name brand until they could get the generic in.
Then yesterday morning when Karl woke up his eyes were crusted shut, the entire inside of his mouth was white with thrush and his ear was full of goop again. I thought we had at least licked this ear infection thing. After numerous phone calls to the clinic and ENT, we now have an appointment with the ENT on Tuesday morning at 8am. The bummer about that is that driving into the city at 8am is about as much fun as taking your child to the ENT where they will poke in his ears and he will cry for hours. To top it off now he has to go to the doctor and be traumitized on his birthday. I was really hoping to have a doctor/clinic free birthday but I guess we will have to wait for next year for that. We are having a small party on Sunday so he won’t really miss out.
Actually Karl has just been fine through all of this. No fever, he’s eating and playing so I shouldn’t be so upset.
The good news is that he got up this morning with no goop in his ear, no sores in his mouth and just a little crusty on his eye. I let hem go to school. Actually I didn't have a choice because he was at the door with his hat and coat on by 8:00. We normally leave at 8:20. He was so fired up to go to school today, it really lifted my spirits. His teachers reported that he was fine all day. They said he was very animated and talkative. He also ate all his lunch including his fruit cocktail which I have been trying to get him to eat for years. Of course I am not as persuasive (or as pretty) as Miss Kathy.
As I was giving him a bath tonight I think I solved the eye problem. I realized that I have been using a new shampoo. All the eye problems started right around the time I bought it. I will quit using it and see if the eye crusties go away. Let's hope that is one problem solved.
As I mentioned already Karl's birthday is Tuesday. He will be 6 years old, so hard to believe. I will post after his appointment and party and update you on the good, the bad and the ugly then.
Take care and God Bless,
Judy

Thursday, January 27, 2005 8:00 PM CST

Hi Everyone,
Thanks for stopping by to check on Karl. Please sign the guestbook. He is really getting into reading his "e-mail."
We had a great day at clinic today. First off there was no traffic what so ever going into the city. I had a straight shot up and back. Then we actually got a parking space in the parking garage. I was sure it would be full and we would have to park in the garage 2 blocks away. I was looking forward to hiking those blocks in -5 degree weather.
The best news came with Karl's counts. After a month long battle with ear infections, conjunctivitus for 3 days, a bout of stomach flu and now a cold I was really expecting those counts to be at rock bottom. Well my little guy knows his Mommy loves surprises. His counts were awesome. I actually thought Dr. Sarah was pulling my leg when she read them to me.
ANC - 3300
HGB - 12.6
WBC - 4.7
PLTS - 373,000
You could have knocked me down with a feather. Karl was as good as gold all during his exam too. He didn't even fuss when Dr. Sarah looked in his ears. Although we have to take in to consideration that it was Dr. Sarah, anyone else would have gotten "the boot." He did fuss when poor Nurse Rose accessed his port. The poor woman probably has black and blue shins from all the kicking.
I was a clever Mommy today and took along his new V-Smile game. We hooked it up to the TV there and he was able to play it while he got his infusion. He also got an early birthday present at the clinic today. It was a Magna Doodle board and he has been playing with it quite a bit.
He is still just Mr. Happy all the time. He is eating great and playing hard and almost sleeping well. I am so grateful that things are going his way for a change. He so deserves it. We know so many kids now that are having a tough time. Please remember them in your prayers or thoughts.
Take Care and God Bless,
Judy

Monday, January 24, 2005 8:12 PM CST

Hi Everyone -
Good News! we got the results of the second culture on Karl's ear today and it showed no signs of the staph infection. He does have and ear infection but it is a very common variety and should be cured by the antibiotic and the ear drops that he is on now. The nurse I spoke to said that either the staph already was cured by all the previous medicines he was on or that the first culture was wrong and that it wasn't there. She assured me that there was no sign of staph remaining. I know I should be upset at the possibility that we got misinformation that resulted in me worrying all weekend but I am just so thrilled that we are not facing a hospital stay or and endless stream of antibiotics that could cause new problems for Karl.
Karl has been happy and fairly healthy. He definitely has a new cold and cough but it isn't too severe and doesn't seem to be troubling him. I am anxious to see what a month long ear infection, conjunctivitus for 3 days, a 24 hour stomach flu and now a cold has done to his counts. It will be a miracle if they are above 500. Of course I am hoping and praying that they are. If they are below 500 they will halt his chemo until they come back up. I get so worried when he is off chemo, it's so dangerous. But for now I am going to play Scarlett O'Hara and think about that tomorrow. Tonight I am going to enjoy putting my precious little boy down in his own bed instead of a hospital bed.
Take care and God bless,
Judy

Thursday, January 20, 2005 10:53 AM CST

Hi Everyone,
We had a wonderful time in Cincinnati. Karl loved being able to stay with his Aunt Mo and Uncle Roger. He also got to spend some time with Aunt Laureen, Uncle Phil and his cousins Larry and Chris. We managed to squeeze alot of fun into 3 short days. I think the highlight for Karl was when he got to go and watch rehersals for Aunt Mo, Aunt Laureen and Uncle Phil's singing group. There were about 11 people in the group and they were rehearsing a oldies show. Karl was in heaven. He just loves music so much and he never really got to hear his Aunts sing before. Uncle Phil even showed him how to play chopsticks on the piano.
That Steeler game nearly gave us all a heart attack. Karl was a little put off by all the screaming (those Pamer's really get into their sports) so I had to take him in the computer room and play V-smile with him until the game was over. He loved the halftime meal though. Aunt Mo cooked one of his favorites - Chili and hot dogs.
Another highlight of the trip was our dinner out at the Steak house. Those of you who know Karl well know that his favorite meal is steak and french fries. He ate his whole steak from the child's menu then half of his Dad's and all of his french fries. When the waiter set the plate down in front of him he threw both fists in the air and hollered "STEAK AND FRENCH FRIES!!" It was hysterical.
Well that was all the good news, now here is the bad. On the way home we noticed that Karl's right eye was full of a thick discharge. By the time we got home is was crusty and swollen. The next morning when he got up both his eyes were pink, swollen and crusted shut. I suspected conjunctivitus (pink eye). I called the doctor and they confirmed and called in eye drops. So besides all the medication he already has to take every day I was putting ear drops in twice a day plus eye drops 3 times a day. His ear infection has completely healed up it seems. We go to the ENT tomorrow for a follow up.
Tuesday night Karl was up and down all night with what appeared to be gas. When he got up that morning he seemed very sick. He wouldn't eat anything. He had 2 loose BMs and then fell back asleep in my arms. Next thing I know he sat up and started to gag. I grabbed a nearby newspaper and sure enough he threw up. Have youever tried to balance a 45 pound kid and a newspaper full of puke at that same time? It is not easy. Karl threw up again later in the day and spent most of the day asleep. He had no fever and was drinking every time he woke up so I wasn't too concerned. I know, I know, those that know me well are saying "yeah sure" right now. I did call the clinic and the pediatrician. They told me there is a stomach virus going around and that it doesn't last long. As long as there was no fever and he was drinking he should be okay. He woke up about 3pm but still did not want to eat. I held dinner off until 6:30 and then he sat down and ate a big peice of swiss steak, 2 helpings of carrots and a scoop of mashed potatoes with gravy. He was still a little restless while sleeping last night and seemed lethargic this morning but all in all seems to be on the mend. Keep your fingers crossed that he stays healthy for a while. He hasn't been to school all week. I will keep you all posted on how he is doing.
Don't forget to root for the Steelers on Sunday. I can't wait to see them cream the Patriots.
GO STEELERS!!!
Take care and God Bless,
Judy

January 21, 5pm update
I had to take Karl to the ENT today for what should have been a follow up visit to determine that his ear infection is all gone. Unfortunately it isn't. He woke up this morning and had a terrible cough and lots of mucous. By the time we got to the doctors his ear was full of goop again. They had to clean and vacuum out both his ears and they both ended up bleeding. He was traumatized to say the least and I was right with him. They did a culture on the discharge from his ear last week and it showed that he has a staph infection. Apparently there are 2 kinds of staph and one is very resistant to treatment. Unfortunately they did not do the second part of the culture which would determine which kind of staph Karl has. They did another culture today but we won't see the results until Monday. They warned me that Karl could get sicker with this and end up at the ER this weekend. Even if he doesn't get sicker if the culture comes back that he has the resistant strain of staph they will probably want to hospitalize him anyway and give him IV antibiotics. I am of course sick with worry and praying that he will be all right. I have to focus on the positive. He hasn't been that sick with this so far. No fevers, no pain just drainage. Plus he has had 2 cycles of antibiotics and both times the drainage from the ear stopped until he stopped taking the antibiotic, then it came back. I would think that would indicate that the antibiotic has some effect on the infection. Please, please, please pray that is the case. I will keep you posted.
Judy

Wednesday, January 12, 2005 8:49 PM CST

Hi Everyone,
Well we had an eventful trip up to Children's today. First off Karl saw the ENT for his ear infection and the doctor said that he thinks we can cure it with drops which is apparently what we should have been using all along instead of oral antibiotics. Since Karl has tubes the drops can go right into the inner ear and fight off that infection.
We also had blood counts done on Karl today. His appointment with the ENT was at 8:45 but the bloodwork wasn't scheduled until 1:30. Since the 2 offices were only 2 floors apart we went up to the clinic and asked if they could squeeze us in instead of having to wait around for 3 hours. Of course those nice people took us straight back and we were home by 11am. I was very concerned to see Karl's counts because I was sure that this 4 week infection had caused them to bottom out. Well our little guy loves to surprise us. His counts were great. His ANC is 1500, platelets had jumped back up to 306,000 and his HGB is still holding at 13.3.
Wish I was doing as well. I went last Friday to donate platelets and started to get very light headed during the pre physical exam. The nurse was taking my blood pressure and having difficulty finding it. She tried again and it was only 90/50. My head was swimming and I got very clammy. I had to put my head between my legs to keep from passing out. This happened again on Saturday and Sunday afternoons and then again on Monday while I was driving. Once when I laid down on the bed the room started spinning just like when you are drunk (not that I know it is just what I have been told). I saw the doctor on Tuesday morning and she said that I have a virus that is going around. It attacks the inner ear and screws with your equilibium. She recommended that I not drive to Pittsburgh today so Kevin had to take the day off and drive. I got motion sickness on the way up, in the elevators while we were there and on the way home.
We are planning a trip to Cincinnati this weekend to visit Kevin's sisters. I hope I can manage 5 hours in the car. Karl would be so happy to go somewhere, especially if it involves seeing Aunt Mo. He just loves to get out now. He made us take him shopping today. We went to the grocery store and to Big Lots and you would have thought we were at Disney. Poor kid has just been shut in way too long.
I probably won't post again until we get back on Monday unless I get really bad and we can't go. Of course in that case I will still be too dizzy to type so you still won't hear from me until Monday. Have a great weekend and don't forget to honor Martin Luther King on Monday by remembering that we are all created equal. Practice tolerance. Among friends, within family and in the community, disability and difference is irrelevant.
Take care and God Bless,
Judy

Friday, January 7, 2005 3:32 PM CST

Happy 2005!
As I predicted we had a very late New Year's Eve. Steroid Boy rang the New Year in with grand style. Then we watched a tribute to the Beatles on PBS. Karl was in heaven. For those of you who don't know the Beatles are Karl's favorites. If you could just hear him singing "Love Me Do."
He knows all the words to most of thier songs and he had so much fun dancing and singing along. What a great way to start the year.
Unfortunately Karl's ear infection is still with us. He has been on antibiotics since the 14th but is still having a discharge. I am giving it until Monday and then calling the ENT. I should probably me more worried than this but he is just so healthy otherwise.
Karl is so happy to be back in school. He is just crazy about all his teachers and classmates. This past Tuesday his class got to go down to the ice arena and learn to skate. They will be doing this every Tuesday for a while. Karl's first attempt wasn't too succesful. His teacher said he was a little cautious. That's my boy! They give them helmets to wear and walkers to push around on the ice but I guess Karl still was hesitant. I am sure he will try again next week as it becomes more familiar. His teacher did tell me that he did well walking on the skates which is usually difficult for them to learn so I guess that's a start.
I have been getting such nice reports from all of Karl's teachers. It is such a wonderful school.
Karl is due to go to clinic next Thursday for labs and then is not due for a treatment until the end of the month. I will post his counts from his next visit. Until then please think of Karl and children like him when you make out those New Years Resolutions and vow to donate blood or platelets and please, please get on the bone marrow registry. I know of several children right now who are looking for a match. You could start the year right by saving a life!
Take care and God bless,
Judy

Friday, December 31, 2004 8:37 PM CST

Happy New Year to all,
We had a wonderful Christmas this year and hope you all did as well. Despite having and ear infection Karl stayed happy and seemed to be completely healthy. He got to visit with family and friends and thoroughly enjoyed the company. He especially had a great time with his cousins, Therese, Jesse, Brian and Erika who are pictured with him in the photo album. Karl got some great gifts, a dry erase board for his playroom, a pirate ship, a gro to pro basketball hoop and a remote control car. He really enjoys wrecking that car into the legs of all my furniture. Another reason to wish for an early spring.
Karl was on an antibiotic for 2 weeks prior to Christmas but it failed to get rid of his ear infection. He was back at the doctors on Monday and is now on a stronger antibiotic. It seems to be working. Unfortunately battling this infection has caused his counts to drop. His ANC is only 700, which is close to the danger zone. If it drops below 500 they will take him off chemo, which always makes me a very nervous Mommy. So keep those prayers coming that he beats this infection and gets those counts back up.
Since Karl is on steroids this week he will probably keep his Daddy and I up quite late, which means we will get to ring in the New Year, something we haven't done for quite a while. Hope you all get to celebrate. I don't know about you but I am more than ready to say good-bye to 2004.
Take care and God bless,
Judy

Tuesday, December 14, 2004 2:14 PM CST

Happy Holidays to all,
Another trip to the clinic today. It was just supposed to be for lab work (blood counts) but I also had them listen to Karl's chest and look in his ears. He still has his cold and cough so I was getting nervous plus he came home from school yesterday with a bunch of goop in his ear. He had been having a lot of wax come out of that ear but this was different. Sure enough he has an ear infection. His counts were all good though. Platelets are 276,000 and HGB is 13.0, and the all-important ANC is hanging tough at 1600. This is the ideal place for it to be during long-term maintenance but preferably on a higher dose of chemo than he is on now. Right now he is only on half dose. We can't up it until we are sure if it is the chemo keeping it low or if it is due to this marathon cold he has had. Now with the ear infection it will probably be another 3 months before we can try upping the chemo again.
Since we decorated last weekend Karl has now re-christened his new room as "Karl's Christmas Playroom". He is so jazzed for the holidays. I went on my annual cookie baking frenzy this past week. Last count - 80 dozen and I still have to make fudge. This may explain why our Giant Eagle bill is larger than our gas bill. It is good therapy for me though and since I started working out and lifting weights again it shouldn't even interfere with my waistline (yeah-right!) I hope we will be getting to see most of you over the holidays. Please stop in for some cookies. Those of you who we don't get a chance to visit with please know we are with you in spirit.
Take care and God bless,
Judy

Saturday, December 4, 2004 11:10 AM CST

HI Everyone,
Things are still going pretty well here. Karl had a spinal tap and chemo on Tuesday. He handled it well. He didn't go "under" quite as fast or as deep as he normally does so they gave him a little more versed. He was very wobbly afterwards. His spinal fluid was clear and his counts were good although his ANC dropped from 3700 to 1700. We are assuming that this is due to the fact that he has been fighting a cold all month. His health has been fine otherwise.
As you may have noticed I finally got some pictures of the new playroom posted. Karl is still enjoying it so. Tommorrow we plan on decorating the house for Christmas so we will take down the car track and put up his tree and train on the platform. I know this will really tickle him.
We took Karl to see Santa at the mall yesterday. He was good as gold. Santa was great. He has a real beard (which I think makes him less scary than those fake beard santas) Santa also knew sign language. Karl always warms up to anyone that signs with him. He hopped right up onto Santa's lap and talked to him for a while. I will post the picture closer to the holiday.
We are looking forward to a very bright and happy Christmas and we are wishing the same for all of you.
Take care and God Bless,
Judy, Kevin and Karl

Wednesday, November 17, 2004 8:45 AM CST

Hi Everyone,
As most of you know Karl qualified for a wish from Make-A-Wish. It wasn’t hard to decide what Karl’s wish would be. He always loved playing in the basement and after his diagnosis with leukemia we had to stop letting him go down there. We have always had a water problem down there and it was full of mildew. We had an interior French drain put in several months ago which fixed the water problem but left the game room a mess. It wasn’t in that great shape anyway but they had to dig up the floor on the perimeter of the basement. This all meant that Karl definitely could not play in the basement. We wanted to pick a wish that said we believed Karl was going to be around to enjoy it for many years to come. So, we decided for his wish that we would fix up the game room and ask MAW to help furnish and decorate. They were great, they bought him a new TV, a V-Smile game station for it and a nice TV stand. They bought him a new table that we can adjust the height on so it can be used for many years to come. They also paid for the paint and the carpet. Kevin did most of the work. He hung the wallboard and with his brother (Uncle John) built a platform for Karl’s train. Kevin also did most of the painting. He is a one in a million Dad.
Well Kevin and I finally finished the playroom project over the weekend. The wallpaper was still on back order but we got everything else done. It looked so great that we decided we couldn’t wait to show it to Karl. He was so thrilled. When he walked in the room I don’t think he knew what to play with first. He loved the new V-Smile game and mastered it in a matter of minutes. He has a radio control car track that his Aunt Suzy bought him years ago that was too big to keep set up all the time. We set it up on the train platform and he had to play with that right away. After Thanksgiving we are going to set up his train and his Christmas tree on the platform. He also was happy to see his firehouse with the truck, helicopter and firemen. That got some attention for a while. We had shelves lined with baskets filled with markers, crayons, paints, various toys and craft supplies. Each basket had to be emptied and examined thoroughly (this will come as no surprise to those of you that know Karl well). Kevin and I had had several debates on what he was going to check out first; Interesting results on this one. Karl had stuffed chair that looked like a giant doggie. When he was diagnosed with leukemia I decided that doggie chair was just too dirty and we wrapped it in plastic and put it away. After we finished the room we decided that it needed another chair so we got out doggie chair and I cleaned it up as best as I could. Well I am sure you all know where this is going. Karl spotted doggie chair and ran right to it first. He even carried it around the room for a while so he could sit on it while he examined all the toys. When I told him it was time to go upstairs and get ready for bed we had to carry doggie chair up so he could sit in it while he watched his last video of the night.
At one point in the evening Karl discovered that there were two doors to his new playroom. He spent a bit of time going in one and out the other. Suddenly he stopped just outside the door. Then he stepped in to the room, threw his arms wide open and shouted "KARL'S PLAYROOM!" It just melted my heart.
I will be posting pictures of Karl and his playroom later in the week. I would also like to thank all of you who helped out. I haven’t seen Karl so happy in a very long time. The best part is that he will get so much more happiness out of his “wish” for many years to come. Make-a-Wish is a wonderful charity. What they do for kids like Karl and their families is just magic. Please consider them when making holiday donations during this “magic” time of year.
Special thank yous go out to Pam and Ted from Make a Wish, Grandma, Dave Vodenichar, Grandpa & Grandma Pamer, Aunt Jeanette, Aunt Suzy, Aunt Nancy, Aunt Betsy, Uncle Jack, Therese and Pete, Grandpa Dick and Grandma Lucy, our friend Bob, and Uncle John for all your various contributions. Also thank yous to the people at Abbey carpet and Wal-Mart. Some of you gave your time, some contributed money and some gave us things for the room. I will tell Karl for many years to come all about how his playroom was built with so many contributions of love.
Take care and God Bless,
Judy

Thursday, November 4, 2004 7:43 PM CST

Hi Friends and Family -
Karl seems to be getting better from his cold. The good news is that Tuesday his counts were awesome. They were all either in or just below the normal range. Naturally being as paranoid as I am I immediately assumed that something had to be wrong. I expected them to be low because he had been fighting off the cold all week. It is a shame that I can't even enjoy the good news. I am a little concerned tonight because he seems to have a headache. It could be the beginning of a sinus infection leftover from the cold. He is very sleepy too. There are a couple of bad viruses going around too. Keep praying that he stays healthy.
I've posted new pictures of Karl from Halloween. He really enjoyed himself. We had a great time at the UP KIDS Halloween party on Sunday. He got to play with all his friends and we got to visit with the other parents.
Karl's next appointment will be on November 30th and it is for a spinal tap. They will probably increase his chemo at that time as well since his counts have been consistently high.
The playroom should be finished by mid month. We are hoping to host an open house type party so that all can come and see it. That will possibly be on Thanksgiving weekend. I will keep you posted.
Take care and God Bless,
Judy

Saturday, October 30, 2004 8:41 AM CDT

Hi Everyone -
Well it has been touch and go the past 2 weeks as to whether or not this would be a Happy Halloween. Karl and I came down with bad colds on Monday. I kept him home from school and then took him to the doctors on Tuesday. They started him on breathing treatments which have worked great at keeping his passages clear. This will help prevent secondary infections which could be so dangerous. Karl even got to go back to school and went Trick or Treating on Thursday. Here in Western PA we never mess with the weekend football schedules. Trick or treat night is always on a Thursday. Karl's class at school had thier party yesterday and since I am homeroom mom I got to be there. I made a pinata for the kids and brought in some treats. They really had a good time. The school also had a dance for them the last peroid. I wish you could have seen all the kids in their costumes dancing and having fun. Karl was a little overwhelmed by the loud music and the lights until they started playing the chicken dance and then he joined right in. I have to confess I kept getting misty watching him. It was just so wonderful to see him doing such a normal kid thing. I kept picturing him stuck in that wagon last year because he couldn't even walk around the neighborhood for trick or treat and there he was dancing. He seems to be a popular guy with the ladies too. Four little girls from his class came over and asked him to dance.
Because of Karl being sick we had to postpone the carpet laying so it won't be done until the 11th. But once that is done just a few little touches will finish the room. He will just go nuts when he sees it. Kevin did so much work down there. He hung all the wallboard and did all the painting and so much else. I am in awe of what a nice job he did on that room. And to think I used to tease him that the only thing in his toolbox was a roll of duct tape. I am starting to suspect that I have been sandbagged all these years of marraige.
I will be posting lots of Halloween pictures as soon as I can so check back soon.
Take care and God bless,
Judy

Wednesday, October 20, 2004 11:39 AM CDT

Hello Everyone and Happy Autumn,
Things are still rolling along smoothly here at the Pamer's. Karl is doing wonderfully. He still loves school. Kevin and I have been able to tell how much he is absorbing there just by things he says or does at home. He is just like a sponge when it comes to learning.
The picture above and the ones in the photo album are from the Light the Night event that benefited the Leukemia & Lymphoma Society. Thanks again to all who contributed and helped raise donations.
Grandma was over for dinner the other night and after we ate Karl put on his Halloween costume to show Grandma. He was so excited that he ran around the house and refused to take it off for quite a while. Halloween last year we had to pull him around in the wagon because he was too weak from the chemo to walk. This year is going to be a different story and he knows it!
We are almost finished with the playroom project. We will be throwing a big party when it is all done. I have to confess to feeling a little apprehensive that something is going to happen to screw up all our upcoming festivities. It is just that the poor little guy had such a crappy year last year and I want this to be the best Halloween, the best Thanksgiving and the best Christmas ever. He deserves all that and so much more.
Karl isn't scheduled for a clinic visit or a treatment until Election Day. So right after I go to the polls and vote for JOHN KERRY then I will update the site with whatever we learn at the clinic that day.
Karl's guestbook was getting really full which means that it takes forever to upload. So I had to start deleting the entries. I have copied them and printed them out for him to save in a scrapbbok. It is a long process though so it may take some time and I have to delete the most recent first.
The leaves here in PA are really beautiful this year. I wish all of you out of staters could see. Maybe I'll take some pictures of Karl in them and post them soon.
Take care and God Bless,
Judy
PS - Hey family, Thanksgiving dinner here at the Kevin Pamer household is on again this year. Let me know if you are coming.

Wednesday, October 20, 2004 11:24 AM CDT

Hello Everyone and Happy Autumn,
Things are still rolling along smoothly here at the Pamer's. Karl is doing wonderfully. He still loves school. Kevin and I have been able to tell how much he is absorbing there just by things he says or does at home. He is just like a sponge when it comes to learning.
Grandma was over for dinner the other night and after we ate Karl put on his Halloween costume to show Grandma. He was so excited that he ran around the house and refused to take it off for quite a while. Halloween last year we had to pull him around in the wagon because he was too weak from the chemo to walk. This year is going to be a different story and he knows it!
We are almost finished with the playroom project. We will be throwing a big party when it is all done. I have to confess to feeling a little apprehensive that something is going to happen to screw up all our upcoming festivities. It is just that the poor little guy had such a crappy year last year and I want this to be the best Halloween, the best Thanksgiving and the best Christmas ever. He deserves all that and so much more.
Karl isn't scheduled for a clinic visit or a treatment until Election Day. So right after I go to the polls and vote for JOHN KERRY then I will update the site with whatever we learn at the clinic that day.
The leaves here in PA are really beautiful this year. I wish all of you out of staters could see. Maybe I'll take some pictures of Karl in them and post them soon.
Take care and God Bless,
Judy
PS - Hey family, Thanksgiving dinner here at the Kevin Pamer household is on again this year. Let me know if you are coming.

Saturday, October 9, 2004 7:31 PM CDT

Hi Everyone -
I told you some time ago all about Karl's Make a Wish trip to Wal-Mart. The above picture was taken that day. If you check out the photo album you will see some pictures from the Buddy Walk last weekend. They are really great.
On Wednesday we went to the Light the Night walk at Heinz Field in Pittsburgh. This benefits the Leukemia & Lymphoma society. I am proud to say that our team overshot our goal by $490. A big thank you to all our team members who helped collect and to all of you who donated. At the walk everyone gets a lighted balloon. The "patient heroes" get a white one and everyone else gets red. When the walk begins it is an amazing sight to see all the illuminated balloons. When it dawns on you how many of them are white you sober up a little. But with all the generous donations like those we collected I am sure we will see a day when there will be no more white balloons at all.
Take care and God Bless,
Judy

Tuesday, October 5, 2004 2:30 PM CDT

HI Everyone - I tried all weekend to update this page and for some reason it would not let me on. I finally got it in last night and now I am updating again so I can tell you about Karl's counts today. First the counts which are all terrific - HGB - 13.5, WBC - 3.4, Platelets, 259,000 and ANC - 2300. Now I am going to add yesterdays post because I want to make sure that everyone gets to read about what a terrific time we had this weekend.
Sunday's Post -
Wow! what a busy week here at the Pamer household. I just feel like I have been running to catch up all week and now we have another big week in front of us. Clinic tomorrow and the Light the Night walk on Wednesday. Then Thursday is our anniversary.
Saturday was a great day. We went to the Buddy Walk which is held to raise funds for the Western PA Down Syndrome Group. I didn't want to go because it had been such a hectic week but my friend Carrie talked me into it and I am glad we did. Karl had a wonderful time. He got to see all his friends from UP KIDS, our support group. Plus 3 of his Aunts were there, Eileen, Mo and Colleen. His cousins Jessie and Therese held his hands and walked the whole walk with Karl. He was delighted. It started to rain at the end of the walk so we headed for the car and our raincoats but once Karl got in the car he didn't want to get back out. He knew we were going to Grandma and Grandpa's. I even told him about the petting zoo but he wouldn't budge. He did get to see a nice big doggie before the walk. It was just beautiful. It was one of those french mastiffs, like the dog from the movie "Turner and Hooch". I took several pictures of Karl and the dog together plus lots of pictures from the walk. I will post all as soon as I get them ready.
After the walk we went to Grandma and Grandpa's where Karl got to play some more with his cousins. We ordered pizza and Karl ate 4 pieces. We didn't leave until almost 10:00pm. You would think with all that pizza in his belly and all that activity under his belt he would have fallen asleep on the way home. Not Mr. Bright eyes, he was wide awake 2o minutes later when we pulled in the driveway. I forget sometimes how boring the past year must have been for him, being stuck at home so much. He gets so jazzed now when he gets to have fun. I wish I could have recorded his laughter when he was running along on the walk holding hands with his cousins. It was just music to my ears. What a precious memory.
Take care and God Bless,
Judy

Monday, October 4, 2004 6:54 AM CDT

Wow! what a busy week here at the Pamer household. I just feel like I have been running to catch up all week and now we have another big week in front of us. Clinic tomorrow and the Light the Night walk on Wednesday. Then Thursday is our anniversary.
Saturday was a great day. We went to the Buddy Walk which is held to raise funds for the Western PA Down Syndrome Group. I didn't want to go because it had been such a hectic week but my friend Carrie talked me into it and I am glad we did. Karl had a wonderful time. He got to see all his friends from UP KIDS, our support group. Plus 3 of his Aunts were there, Eileen, Mo and Colleen. His cousins Jessie and Therese held his hands and walked the whole walk with Karl. He was delighted. It started to rain at the end of the walk so we headed for the car and our raincoats but once Karl got in the car he didn't want to get back out. He knew we were going to Grandma and Grandpa's. I even told him about the petting zoo but he wouldn't budge. He did get to see a nice big doggie before the walk. It was just beautiful. It was one of those french mastiffs, like the dog from the movie "Turner and Hooch". I took several pictures of Karl and the dog together plus lots of pictures from the walk. I will post all as soon as I get them ready.
After the walk we went to Grandma and Grandpa's where Karl got to play some more with his cousins. We ordered pizza and Karl ate 4 pieces. We didn't leave until almost 10:00pm. You would think with all that pizza in his belly and all that activity under his belt he would have fallen asleep on the way home. Not Mr. Bright eyes, he was wide awake 2o minutes later when we pulled in the driveway. I forget sometimes how boring the past year must have been for him, being stuck at home so much. He gets so jazzed now when he gets to have fun. I wish I could have recorded his laughter when he was running along on the walk holding hands with his cousins. It was just music to my ears. What a precious memory.
Take care and God Bless,
Judy

Saturday, September 25, 2004 7:18 PM CDT

Hi Everyone,
I want to tell you all about Karl’s wonderful exciting day today. Pam who is Karl’s “wish-granter” from Make a Wish came and took us shopping for things for his new playroom. Pam is really great and she has been so helpful. Especially when you take into consideration that Karl’s wish is a little unconventional. First we stopped at the carpet store to pick out the carpet. While Pam and Mommy were talking with the salesman one of the carpet installers entertained Karl by juggling three balls. This guy was really good. He could throw one ball between his legs and catch it on the back of his neck while still juggling the other two. Karl was delighted.
Then it was on to Wal-Mart. Two very nice ladies who gave Karl a Wal-Mart vest and nametag to wear greeted us. They also gave him a balloon and a little cake, plus they gave me a camera to take pictures of our shopping trip, which I will post soon. The one lady, Beth took us around the store and helped us find everything we were looking for. We got Karl a new TV and a game station plus some games. We got all the paint we needed plus the supplies to get started. Karl was in his glory. Every store employee stopped and made a fuss over him. He was so tickled. If you could have seen him tottering down the aisle with his Wal-Mart vest on it would have melted your heart. My only regret is we didn’t get to say goodbye to Beth who was so helpful and so sweet to Karl. She disappeared when we were checking out. I plan on writing her a great big thank you. Needless to say little Wal-Mart shopper fell fast asleep on the way home. Looks like this project will be finished soon. I just can't wait to see the look on his face. Dreams come true.
Take care and God Bless,
Judy

Friday, September 24, 2004 10:45 AM CDT

Hi Everyone,
Karl was feeling much better by the afternoon yesterday and this morning he was fine. He was anxious to get back to school. I of course now have the sniffles. If it only lasts as long as his did I can't complain.
The good news is that we have exceeded our goal for Light the Night donations. Thanks to all of you who contributed. Your generosity will help so many children and their families. Five children connected with my online support group lost thier battle with leukemia in the past two weeks. I look at Karl and I feel so blessed and so lucky to have him at all but I am selfish and I want him around for the rest of my days. I thank God everyday that he has made it this far and I pray that he will have no setbacks.
Love to all of you,
Judy

Thursday, September 23, 2004 8:05 AM CDT

Hi everyone,
Karl is home from school today. He seems to be coming down with a cold. He has had the sniffles off and on for a few days but I was positive it was just allergies. I am still not sure what we are dealing with but I though it a good idea to keep him home today.
His counts on Tuesday were great. His ANC - 1900, HGB - 13.3 and platelets at 274,000. Of course if this turns out to be a cold they will definitely change.
He is still eating well and playing so I have postitive thoughts. It is so hard to deal with the fact that if we were in a typical situation a cold would just be a cold. Instead every time his nose runs I have visions of trips to the ER. I worry about complications and secondary infections. A simple cold can turn into seriuos sinus or ear infections that he might not be able to fight off. Or even worse we could be back in the hospital with pnuemonia. Right about now you are all saying "I thought she said she had a postitive outlook?" Sorry for the downhill slide there. I will keep you all posted on how he is doing the next few days.
Judy

Thursday, September 16, 2004 7:56 PM CDT

Well Karl is still waking up every morning excited about going to school. He must have been really sick of being stuck at home with his Mom. His IEP meeting was yesterday and when his teacher read off the list of goals she had set for him they were almost identical to mine. I knew she was a great teacher. She has such a grasp on his abilities. Plus she can see where he needs help.
Karl has had a great week. Our neighbor Debbie stopped by with 5 Clifford books for Karl. He was so happy. He has been reading them everyday. Then his Grandparents came for dinner on Sunday. He was very wound up that night. He just loves getting company.
Our good friend Dave stopped by and helped out with the electrical work we needed done for the playroom project. Dave is Dad to Karl's friend Roni. He brought her along and she and Karl got to play while the Dads got to play downstairs. We owe a big thank you to Dave for taking time out of his very busy schedule to help us out. Now that the electrical work is done and the wallboard is up we should be ready to paint soon. We are hoping to have it finished by Thanksgiving and I think we'll meet that deadline. I feel a party coming on.
Karl goes for counts on Tuesday and then another treatment 2 weeks after that. I expect his counts to have dropped a little but am hoping that he is still up in the safe zone. Keep your finger crossed.
Take Care and God Bless
Judy

Tuesday, September 7, 2004 1:02 PM CDT

Hello Friends and Family,
We just got back from clinic and Karl's is fine and his counts were great. HGB - 12.2,platelets - 250,000 and ANC - 1200. This meant that he was able to receive a full treatment today. It is a big relief for me to have him back on chemo. I worry so when he is off chemo. We don't want those nasty leukemia cells coming back when our guard is down. Karl was exceptionally good today. He barley fussed when he had his port accessed and he was calm during his lumbar puncture. He fell asleep on the way home and is asleep now. Karl was very happy today because he got to see Dr. Sarah. He sure knows how to flirt. He said his alphabet backward for Dr. Sarah and she was very impressed. As a matter of fact she brought Dr. Wollman back in the room later so he could hear Karl say it. By that time Karl was under sedation so we weren’t sure he could do it. He started out very slow and then drifted off at the letter Q. A few seconds later he perked up again and started right back with Q and finished the whole thing. He just cracks me up sometimes. He will start back to school tomorrow. I hope he does well this week since he will be on steroids the whole time. We aren’t really sure what to expect. I will post next week with an update.
Take care and God Bless all of you,
Judy

Monday, August 30, 2004 11:25 AM CDT

Hi Everyone - Well we are back from the clinic and Karl's ANC is still low, 200. It did go up 100 since last week so it is on the rise. Taking that fact into consideratiion and the fact that he has been so healthy and active we have decided to send him to school tomorrow. That thump you just heard was my heart dropping into my shoes. I can't believe my baby boy is going to go to Kindergarten. Over the past few days when I look at him he seems to have grown up so. I can't get used to the fact that he is going to be in school everyday. I will miss him so. I know he will love his new school and he will have so much to do there that he won't get homesick. I have served on a couple of committees with the woman who will be Karl's teacher. If I could have hand picked from all teachers I know who I wanted to teach him his first year it would have been her. I know she will take good care of him and he will learn alot in her class. Please pray that I can hold it together tomorrow when I say good-bye. I don't want to scare Karl by crying in front of him. I will post tomorrow and let everyone know how he does (and how I do).
Take care and God Bless,
Judy

UPDATE, 9/1 - Karl's first day went really well. He was so excited that he just ran down the hall. I didn't even start crying until I was in the parking lot. His teacher told me that he didn't eat all day but I expected that since it was his first time eating in a cafeteria. Today they get to go swimming which he is really jazzed about. Tomorrow they get to have Home Ec. and Music class then Friday is gym day. He is going to be one busy gut. This is good because Karl is scheduled to have a chemo treatment on Tuesday and he will start on the steroid then as well. Maybe school will tire him out enough during "steroid week" that he will actually sleep at night. I will post again after Tuesday. - Judy

Tuesday, August 24, 2004 10:39 AM CDT

Hi Everyone,
Well we just got back from clinic and the news isn't so good. Karl's ANC (immune system) is at 100. This is so depressing on so many levels. We were just beginning to enjoy the freedom of being able to go places and do things since we started final maintenance. Now I will have to worry constantly about where his counts are. Karl is scheduled to start Kindergarten on Tuesday. I am taking him to get his counts checked on Monday and if they are still low then I will have a big decision to make about whether or not to send him on his first day. The worst part about this whole thing is that on Sunday we attended the annual UP KiDS picnic. It was at a park with a playground and a sandbox. Karl was around lots of other kids so now I will worry all week that he was exposed to something that now he won't be able to fight off.
I guess the picnic was worth it. Karl had such a good time. It was so good to see him playing with all his old friends. It was so good for me too to be able to catch up with all the moms from my support group. It just all felt so normal and happy. Karl and I were on a high all day yesterday. Reality just loves to lurk in the shadows and jump out to smack me in the face at these times.
As the song goes "I get knocked down, but I get up again, they're never gonna keep me down!"
Take care and God Bless,
Judy

Sunday, August 15, 2004 10:25 AM CDT

Hi All -
Things are going at a pretty hectic pace in the Pamer household lately. It just seems that we are coming out of the tunnel (TAH-DAH) and entering the world again. I am very nervous about the fact that Karl will be starting school in just 16 days. I really hope he can handle the schedule. He has been home with me so much in the past year and now he will be at school 5 days/6hours. I am also concerned about how he will do in school and about his health there. Those of you who know me well will not be surprised to hear that I have already sent about 12 pages of info on Karl to the school. They are going to think I am one of those pain in the a** mothers. Who am I kidding? I am one of those pain in the a** mothers.
Karl has still been so happy and lively. He is turning into a real chatterbox. He narrarates my day, "Mommy is washing dishes, Mommy is folding clothes, Mommy is reading mail...." I feel like I am on some strange reality show. Time for a a little bragging. Karl has started saying the alphabet backward. It is pretty amazing because he does it kinda fast. Not to mention that he taught himself. He just started doing it one day.
Kevin will be on vacation this week. We are going to try to start on the basement playroom project so that Make-a-wish can finish. The big setback now is that we have a small amount of water in the basement. We have a guarantee from the waterproofers that the basement will stay dry for life. However we have had trouble getting them to come and fix this problem. We certainly can't move ahead until it is fixed,plus we still need an electrician. I am starting to think we should have just gone to Disney World. I really wanted a wish that spoke to the fact that Karl has a future, not something that sounds like a last chance. Of course a trip to Disney could be an excellent reward for all he has been through. For now we will stick to the original idea.
I keep forgetting to announce that Karl has a new cousin. A beautiful little girl named Hannah.
Take care all and make the most of the rest of your summer.
Judy

Tuesday, August 10, 2004 5:46 PM CDT

Hi Everyone - We had a good day at clinic today. Karl's counts were all in the good range. ANC-1020, WBC-2.0, Platelets-294,000, and HGB-12.9. Karl is still on half dose of Methotrexate and 3/4 dose of 6-MP. Dr. Wollman said that if Karl's ANC would climb up a little more then we could possibly increase his doses to full strength which would be best case scenario. He is still pleased with where Karl is at right now and thinks all his other stats look great.
Karl has been having an awesome time the second half of his Summer. He is still loving summer school. I think he has made a few friends. He had to miss one day last week because he was up half the night and neither of us could get going the next morning. He gets a little restless at nights, kicks and moves around alot. It could be from the drugs.
He is still going swimming every Thursday evening and he just loves that. I think he will be a good swimmer as he grows older.
Last Saturday his Grandparents came to dinner and so did his cousins Therese and Jessica. Those kids ran around and played for 5 hours straight. We all got tired just watching them. Those girls are so sweet to Karl and he just loves them. I haven't seen him so happy in a long time. I took lots of pictures which I will post on here as soon as I get them developed and uploaded. Check back in a week or two.
We are going to walk with Karl on the Light the Night event at Heinz field on October 6th. Anyone wishing to join us or to donate to Karl's team check out the link below.
We wish all of you a wonderful time for the remaining months of summer.
Judy, Kevin and Karl

Wednesday, July 28, 2004 12:18 AM CDT

Hi everybody - I know I said that I would update this yesterday after our clinic trip but we ended up not going. I had a bad migraine and so had to reschedule Karl's bloodwork for tomorrow.
Our lives since my last posting have been very routine and normal. I don't know if I can express to all of you how great it felt to type that last sentence.
Karl is really loving summer school. I keep waiting for him to tell me some morning that he doesn't want to go but it just hasn't happened. He talks about his teacher Miss Amy quite often so I can tell he really likes her.
Karl has also been having a great time at swimming class with Miss Katie. He is such a water bug.
I really don't have a lot of news to post so I thought that instead I would post Karl's Vision. I attended a seminar several years ago for parents of children with disabilities and they suggested that you write your vision of your child's future. We share this with the people in his life so that they can see the long term goals that we have planned for Karl. I recently updated it and thought it would be appropriate to share with all of you.

Our Vision for Karl

It became very apparent to us shortly after Karl’s birth that this was no ordinary kid. This conclusion had nothing to do with his disability and everything to do with his abilities. Karl attends extremely well and shows amazing cognitive ability. This makes teaching him a very easy thing to do. Right now at age five Karl can sign over 250 words. He signs and speaks in up to five word sentences. Karl knows his alphabet, upper and lower case, which he can print in upper case. He can count up to 100 and back down again. He can count objects up to 20. Karl can spell over 25 words and can sight-read over 40 words. Karl has experienced some physical setbacks due to being diagnosed with leukemia in June of 2003. He had to learn how to walk again and is being retrained on the potty. He has faced this and many more challenges with his trademark determination and good spirit.
As for us, the joy and happiness Karl has brought into our home, the purpose and meaning he has brought into our lives is indescribable. Karl wakes up every morning with a smile on his face and our greatest wish is that he continues to do so for the rest of his life. We feel that this can be accomplished by helping him to become an independent, self-sufficient, self determined member of his community. The foundation for this vision has to start now.
We feel that to not nurture Karl’s love of learning would be a terrible waste, for this reason we have started a college fund. Karl has a love of music that we hope he decides to pursue throughout his life. He also loves reading books. A book can provide escape, open new worlds and experiences, or just entertain. We want to encourage Karl to continue his love of books.
We know we can’t always be there for Karl (and that we shouldn’t) so we want him to discover independence. We also want to encourage him to make friends and to develop good family ties. The strength of independence lies in a strong foundation of family and friends.
Karl has attended mass with us (almost) every Sunday since he was born. We hope to instill in him a deep faith. We want him to realize the importance of religion and the need for God’s guidance in all aspects of his life.
We have never felt that a label should define any child’s potential, however all too often we run into people who want to predict Karl’s future this way. We will refuse to let this happen. We believe that children like Karl can set a new example. One that says all children must have the right to set their own goals and to determine their own limits.
When Karl was first diagnosed with leukemia we became very frightened, but when we think about his determination, his strength of spirit, and his astounding abilities we know God has intended much, much more for him. We are asking all family, friends, doctors and nurses, teachers, therapists, priests and religious leaders, service coordinators and providers, and anyone else who is involved in Karl’s life to help us start building for Karl the future he deserves. We guarantee that Karl will make this a worthwhile pursuit. Someday we will all be proud to say that we had a hand in forming this amazing human being.

I will add Karl's counts to this page on Thursday or Friday. Take care and God Bless,
Judy

Tuesday, July 13, 2004 6:38 PM CDT

The past two weeks have been terrific. Karl has just been overflowing with energy. He just doesn’t walk into a room he bursts into a room. His spirits are way up and his health has been great (a few allergies). We found out the reason why today at the clinic. His counts are awesome: ANC – 3900, HGB – 13.0, and platelets – 309,000. Nurse Rose said that he is doing so well in the counts department because of the change in antibiotics. Dr. Wollman upped the dosage on his chemo today. The goal during final maintenance is to get the dosage as high as possible while keeping is immune system in the safe zone.
My birthday was last Wednesday but since Kevin’s day off was Tuesday we had our Family day together then. Kevin arranged a nice surprise for me. A woman he works with has a horse farm and Kevin arranged for us to go there so I could ride. Unfortunately the woman got stuck late at work so I didn’t get to ride. This might have been fortunate since it has been over 10 years since I was on a horse and I'm not sure I could pull my fat butt up in to the saddle. We got to see the horses, which were beautiful and we had a nice ride in the country on a gorgeous day. Karl was more interested in the cows. They came walking down the path right by us. Each one stopped and mooed at Karl. He was thrilled. Then we went to Hanks and got tacos, burritos and frozen custard. YUM! What was I saying about a fat butt? Just being with my family made it the best birthday I could ask for. It was a beautiful day.
Karl started back to swim class with Miss Katie. He loved it! He is really a little water bug. He has no fear at all. It is getting hard to hold on to him. He thinks he can just let go and swim away.
We got to take Karl to church this past Sunday where we saw our friend Bob. Bob is a great guy and friend. He and his mother have watched Karl grow up from the pew behind us every Sunday since he was born. Unfortunately Bob’s mom, Margaret, passed away a couple of weeks ago. She was so fond of Karl and we will miss seeing her smile on Sundays.
The big news is that yesterday Karl started summer camp (school). I was so worried that he would have a hard time adjusting to being away from me after us being together a whole year 24/7. My worries were a little eased by the fact that Karl’s good friend Turner would be in his class. Unfortunately when we got to school we discovered that Turner and Karl were in separate classes. I knew something was wrong when we walked through the door and I saw my best friend Carrie (Turner’s mom) standing there with a look of complete distress on her face. God bless her she was so concerned about how I was going to handle the news. She knew how nervous I was about “The First Day”. I kept my cool and decided not to get upset in front of Karl. We went into his assigned room and as luck would have it an old friend of Karl’s (Robbie) from pre-school was there. He and Karl remembered each other and called to each other. Then Robbie patted the seat next to him for Karl to come sit down, which he did after kissing me goodbye. I then went for a big long walk with Carrie around my old childhood stomping grounds. After that I headed to Mom’s where she tried her best to distract me as I stared at the clock. When I went to pick Karl up the kids were all outside in the play yard and Karl was rolling in the grass, which is his new favorite thing to do. He was so HAPPY!!! Last night he was just bouncing all over. I think he just feels so normal.
Moral of the story here folks is to appreciate the little things in life. They are what you miss the most when they aren’t around. In other words – Take time to roll in the grass.
Judy, Kevin and Karl

Tuesday, June 29, 2004 4:45 PM CDT

Hello Friends and Family,
We made it through another day at the clinic and Karl is doing fine. His counts were good. ANC – 1300, White count is 2.5, hemoglobin is 11.7 and his platelets are at 302,000. These are all either in or close to the normal range. I am actually relieved that Karl’s ANC went down a little because if is shoots up too high or too fast it can be a sign of relapse, so needless to say I breathed a big sigh of relief when Dr. Wollman brought his counts back today and I saw that he was smiling.
We have had a great week. Since Karl’s counts were so high last Tuesday we decided we could get him out a little so Grandma and I took him to the carnival in Beaver and he got to ride on several rides. Grandma bought him an all day pass but he got tired after 5 rides and wanted to leave. It was still money well spent because he was just beaming on every ride. We all went out to lunch after it was a great day.
On Friday Karl went for his speech and physical therapy with Miss Kim and Miss Katie, two of his favorite ladies. He hadn’t been to therapy in a while so he was pretty excited to be there. He did very well at both and had a great time. Miss Kim showed him how to make black spaghetti with the play-doh machine so naturally he asked me to make some for his lunch the next day. With Miss Katie he got to ride the bike and the scooter then climb the steps and jump on the trampoline. You would think that all that activity would make him tired enough for a nap so that Mommy who has been nursing a sinus infection all week would get a chance to lay down too, no such luck.
On Saturday we had our UP KiDS (United Parents of Kids with Down Syndrome) meeting. It was held outside at a friend’s house and Karl got to see all his old playmates. They had a good time playing on the slide and in the playhouse. It was so great to see Karl getting a chance to be a normal kid again.
On Sunday Karl got to go with Daddy to Grandma and Grandpa’s house where he got to eat Grandpa’s famous steak and homemade French fries. Mommy got to stay home and get caught up on some much-neglected housework and then take a big long nap. As I understand it Karl ate all of his steak then finished Uncle Jack’s, Daddy’s and Grandma’s besides wolfing down quite a few fries and just a couple bites of broccoli. Then he played outside until late in the evening. He just didn’t want to leave and come home. This is a good sign because we have been worried with Kindergarten looming around the corner how he is going to take being away from home all day.
The basement playroom project is slowly getting underway. One of the Dads from UP KiDS is going to help with the electrical work. Once that is completed we can start work on the walls and building the platform. If anyone with wallboard or carpentry experience that has some free time wants to come help out just call. I plan on calling a local high school to see if any of their art students would be interested in painting the mural. Once we get all that done then Make-a-wish can come in and do the rest. Karl will be thrilled. I can’t wait to see his face. We will have a party and I will take plenty of pictures and video.
Karl is not due back to clinic for 2 weeks so we probably won’t post again until then.
Take care and God bless,
Judy, Kevin and Karl

Wednesday, June 23, 2004 7:39 AM CDT

Hi Everyone,
Great news at the clinic yesterday. Karl's ANC was at 3,400! This is so much better than good. Karl got the second half of his treatment yesterday, which involved a spinal injection of methotrexate. He handled it so well. We were worried the day before because Karl was coming off a week of steroids and eating us out of house and home. His clinic appointment was not until 1:30pm and he is not allowed to eat for 7 hours before he has a spinal. Karl solved that problem for us by staying up until 4:30am the night before so he slept until 11am yesterday. The reason he was up so late was that he took a nap at 6:30pm. I was dishing up dinner and Karl was hovering at my side. I was putting a scoop of cheesy mashed potatoes on his plate when he reached out and a big plop of them landed on his arm burning him. Naturally since I am first-aid and CPR certified I instantly screamed for Kevin who kept his cool got a cool rag then carried Karl to the bathroom where we ran cold water on it for 10 minutes. It was starting to show a big white bubble, which really scared me because an infected burn could be dangerous to Karl. We then put on some antibiotic ointment and wrapped it in gauze. In order to get Karl to calm down we took turns holding and rocking him so of course he fell asleep. When we got to the clinic yesterday and Dr. Wollman unwrapped the gauze there wasn't even a mark. I think Dr. W. and Nurse Rose thought Kevin and I had finally flipped.
I was worried that the incident would turn Karl off from his mashed potatoes but he calmed that fear by eating two helpings with gravy along with an entire chicken breast and a big spoonful of peas for dinner last night.
Part of the reason that Karl's counts came up is that they took him off of his prophylactic antibiotic, which does bring counts down. They will put him on a new one called Pentamidine. The good news about this is that it is administered as an IV injection once a month at the clinic. Karl was taking the old one by mouth in liquid form and he really didn't like the taste.
Sunday was a really bittersweet day for us. Besides being Father's day it was the one-year anniversary of Karl's diagnosis. Kevin and I both remarked that it seemed much longer than a year. It feels great to come this far but we still have 2 years ahead of us and if they are as trying as the first we are going to end up in straight jackets.
Karl is scheduled to go up next week to get counts and his new antibiotic. I will update this message then plus I plan to put on some new pictures as well so check back.
We do know that things should get easier from here on out. Karl is certainly doing much better. He was so happy yesterday. Usually after he is sedated he sleeps the whole way home but he was in the backseat laughing and chattering. We even heard the big "Tah-Dah" when we went back through the tunnels.
Take care and God bless,
Judy, Kevin and Karl

Saturday, May 15, 2004 4:37 PM CDT

Hi Everyone,
We are still in a holding pattern waiting for Karl’s final maintenance phase to begin. I am completely stressed about him being off chemo this long. Karl loves his “vacation”. He sure is recovering nicely. So this is what it is like to have a healthy typical 5 year old. I am exhausted.
I thought I would take this time for some long overdue thank yous. First a big thank you goes out to my sister Suzy who dropped everything and flew home from New York City when Karl was hospitalized. And this is a very busy woman. We love you “Aunt Sooshie” and we can’t tell you what a blessing it was to have you here.
Second big thank you goes to Aunt Colleen and Uncle Mike, Kevin’s sister and her husband. As most of you know we had to cancel the big clean up the yard party. Colleen and Mike came down with their roto-tillar and worked all day out in the yard helping Kevin get it back to normal. (An extra thanks to Grandpa Dick for giving us his roto-tiller too.)
I also want to thank everyone who sent cards, balloons and packages to Karl while he was in the big house. It really brightened his day. And big thanks to Grandma (my Mom) who was up to visit several times and brought cookies. Thanks also to Grandpa Pamer, Uncle’s Gavan and Brian, Grandpa Dick and Grandma Lucy who all came to visit. I think you all played a big hand in Karl’s recovery and in keeping me sane.
A very special big thank you to all the kids at Echo Horizon School and at The Willows who folded cranes, sent cards and letters and made some great gifts for Karl. You have picked up Karl’s spirits at some of his lowest points. He still watches the videos and looks through his cards. I hope someday we can come out to California and thank all of you in person. For kids your age to put so much effort into helping a little boy you have never met is not only remarkable but also very admirable.
Thanks as well to the kids in Aunt Mo’s class at St. John the Baptist School in Cincinnati for making some great cards and sending them to Karl.
Another thank you goes out to Karl’s Grandma and his ever lovin’ Great Aunt Nancy for the constant stream of cards (at least 2 a week) that Karl has received since his diagnosis.
As always thanks to all of you dear friends and family for you constant phone calls, e-mails, cards, good wishes and prayers. It all helps more than you can ever imagine.
We love all of you. Take care and God bless.
Judy Kevin and Karl

Tuesday, May 11, 2004 8:55 AM CDT

We are in the hospital. Karl was admitted last Wednesday with possible pneumonia. He had a severe cough and a high fever. His counts were also low. The chest x-ray showed a shadow in his lung but it wasn't as definite as pneumonia usually shows up on an x-ray. He has had blood and urine cultures which all came back negative for infection. The oxygen level in his blood has been low and he had to be put on oxygen when he was admitted. We are now gradually trying to wean him off of the oxygen. That will be one of the requirements for us to go home. He must also be fever free for 48 hours and his counts need to come up and of course he needs to eat. He is improving but it has been a very gradual process. His bouts of fever and coughing are fewer and further in between and his counts are on a gradual increase. He has recieved platelets and red blood since his admission too. The stay hasn't been too bad. We have had wonderful nurses and the best doctors. The room has a VCR and a DVD player and obviously a computer. Karl sleeps a lot and he needs the rest so we are asking to limit phone calls to immediate family and a few close friends but please feel free to send a card because you know he loves to get mail. We will post more info later. Keep those prayers and good thoughts coming. Love, Judy and Kevin

Wednesday, April 28, 2004 8:10 AM CDT

Karl started the second half of his intensification phase of treatment yesterday. It will be a rough two weeks but after that he will be in final maintenance. That means only monthly trips to the clinic and he will have a lumbar puncture only every three months. Last week Karl was really in great spirits. We were starting to see signs of not the old Karl but the Karl that would be here if he weren't going through all of this. Monday night he got to ride his bike out on our road. We thought it would be safe thing to do now that he is off the blood thinners. You should have seen him go. We both had to run to keep up. He was laughing and giggling the whole time. As we watched him we kept thinking of how this seemed to be a promise of a new day. How unbelievably normal it seemed to watch our son peddle his tricycle down the street. He is not feeling too good now but it won't last and soon he can get back on that bike. We have enrolled him in a Summer camp program that starts in July and he will be starting Kindergarten at New Horizon School in the fall. Just a typical kid leading a typical life. We couldn't ask for anything more
Judy and Kevin

Sunday, April 11, 2004

Karl is currently in his Second delayed intensification phase. We were confident going in since he has already been through this but have since found out that when children repeat phases the chemo often hits them harder and keeps them down a little longer. This has proven true with Karl. He is definitely experiencing more side effects and his counts have dropped dramatically. But his trademark spirits are still high. He had a terrific time yesterday going on a Easter Egg hunt at Grandma's and he was thrilled to finally go to church this morning after being away for so long. His counts were probably too low to take him but since we have been so careful we felt it was worth the risk to go. Everyone was so pleased to see him. He will be on a break from chemo now for a couple of weeks so his counts can come back up. Then he has a couple of heavy weeks of treatment but after that we are finally in final maintenance. That means only monthly trips to clinic. We may get a little normalcy back in our lives. Happy Easter!

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