Welcome to Jack's Place!

Now in Jack's life he is starting to ask questions about Histio in a way he never has before. We have a picture on the fridge of white and red blood cells, that we hand drew, to explain what histiocytosis is to a 6 year old. Mind you, he is one very bright 6 year old but he just does not understand this. Why would those cells hurt my body when they are supposed to help it? Will they do it again? Is it gone for good? We picked up TEAM JACK shirts yesterday. They are for the 3rd annual Histio Heroes 5k that is happening this Sunday in Batavia. There are 70 of them. 70 folks who will be wearing a TEAM JACK shirt Sunday. Jack seems puzzled by this. Why would so many folks wear a TEAM JACK shirt? He is just discovering that histiocytosis does not happen to everybody, or every family. What will Sunday be like for him with so many folks wearing shirts with his name on it? Balancing our commitment to finding a cure with Jack beginning to find his way through his histiocytosis experience is a dance. As parents we were leading Jack for some time. But as each year passes, we have come to find that at some point, Jack will take over this journey. He will define what he wants to be related to his experience with histio. He will, of course, always be our Histio Hero. But someday, that may not be what he wants to be. Maybe someday he will just want to be Jack. Jack the football player. Jack the teacher. Jack the president. Jack the way Jack defines it.

Wouldn't that be something?

Feel free to join us as a runner or a walker this Sunday. If you cannot attend, please consider donating to one of the 50 runners and walkers that will be with us this weekend. We are still working towards a cure in Jack's lifetime.

~ Jeff and Melissa

We are enjoying this time of health for Jack and feel quite blessed.

The summer has been enjoyable; we are sad to see it coming to an end. Ryan leaves for his sophomore year at Iowa State this week. Sam and Jack begin the school year on August 26th. Sam will be a junior and just have gotten his driver's license. Jack will begin first grade with his classmates in Mrs. Neuman's class.

August 1st marked 22 months of no active disease/remission for our Jack. Thank you for your continued thoughts, prayers and support. We received a phone call on Friday from Dr. Ruth's office letting us know that it is time to begin the transition to the survivorship clinic at the University of Chicago. Jack will begin working with a new medical team on this journey. We don't know more details than that at this point. October 1st is the 2 year marker since Jack's last chemotherapy and his anniversary date for beginning his remission journey.

Please do not forget to join us on Sunday, September 20th as we fight to find a cure for Histiocytosis. It is the third annual Histio Heroes 5k Run/Walk. You can join us as a member of Team Jack or you can support us in our fundraising efforts (of course you can also do both!). Remember - the only research funds we have are those we raise to find the cure in Jack's lifetime.

We are determined to have the largest fundraising effort AND the largest team this year!

Healthy Milestones

Four years. February 17 was the anniversary of when we began our journey with Jack into the land of Histiocytosis.

So much has happened since then. We are blessed beyond measure to be in remission right now. As I write this, I notice how often I write the word "we" in the entries here in Jack's Place. We - a family of 5 and all those who has supported us - are in remission right now. Each of us have been changed by the experience of Jack's illness - Jack included. Many of you who have walked the path with us have also been changed by this experience. We have learned that change is not a four letter word and may not be all bad. Change can be hard and scary at times and may even shake you to your core. But change can bring new perspective, new priorities and a new beginning.

Lately, Jack has been asking some questions about his "boo boos". He wants to know if everyone in the family has had them. He wants to know what happens if the boo boos come back. He wants to know why he had histio. We have no answers and yet are so happy to hear that Jack wants to know these things. We share what we know, and encourage him to ask us anything. We all will process this experience and its impact for a long time.

Emily Kingsley wrote the lovely story called "A Trip To Holland". We shared this here some time ago, about the experience of landing in the world of childhood oncology - a place we never planned to go. Her story summarizes the experience of landing in a place you never planned on going, never read about, and what the experience is like to land somewhere in the life of raising children unexpectedly. A few days ago, we came across the following titled "Celebrating Holland" .

I have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept that this is a different trip than I'd planned.

I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.

I think that Holland is used to wayward travelers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?

Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer. I have come to love Holland and call it home.

Yes, I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined.

We'd like to ask for prayers for our friend Olivia, who is a Histio Hero just like Jack. Maybe you saw her and her family at the Histio Heroes run. Her Histiocytosis has come back and is requiring a very intense chemotherapy since it has not responded as well as the medical team would like to the front line treatment.

Sometimes no news is good news and this is clearly the case related to Jack. He continues to march forward on his remission journey and for this we are feeling blessed beyond measure. Jack continues to do well in school, moving into reading and math groups, going to play dates, and even celebrating the inauguration with a big viewing in the school gym. He adores all the snow but did ask us if we could move somewhere warm when it was so cold here in the Midwest last week. 20 below zero with a windchill of the same made it feel like 40 below zero around here and we really did start to wonder why we live where we live. Oh right, we love the change of seasons....

Last week Jack moved forward through another milestone of healing. He received his first vaccination since he was 15 months old- the MMR. This went well as Jack used his "magic cream" from the Mr. Port days. Who thought we'd love to take Jack in for his shots!?! We are holding on to every average experience that was interrupted or detoured by Jack's treatments.

Jack is enjoying school and life all together.

On October 22, Jack has his port removed. He referred to it as "Mr. Port" and could not wait to bring it home. A port is used to give some types of chemotherapy. Jack's port was placed on November 2, 2005 and that was the day he had his first chemotherapy right in the surgery suite. The port is placed by making an incision on the chest and then slid under the skin. If you look at Jack's photo (above) you will see some holes around the edge of the port. Those were secured to Jack's chest wall so it wouldn't move. The long tail on the lower right side of the device has tubing that is inserted into a major vein that goes into the heart. The middle circle of the port is where a nurse would access it by using a needle through the skin. Jack had a port for just about three years.

After lots of work by the surgical team we are happy to report that Mr. Port was able to come home the day of Jack's surgery. We understand that this is not standard operating procedure at the hospital and we thank Jack's surgeon from the bottom of our hearts for making this happen. As you can see in the photo, Jack was so happy to bring him home and show the world how the port worked to give him medicine that made his "histio boo boos" go away.

Jack was, without question, the bravest boy we have ever seen. He did not seem nervous or scared about the surgery. He was so happy to be able to meet Mr. Port that he could not wait for the surgery to get underway. While he was surprised how sore he was after surgery, he could not wait to come home and show everyone Mr. Port. Our good friends came by with celebratory balloons (Star Wars of course!) and hugs for our brave boy! He was so proud to tell everyone what Mr. Port does and how he was happy to have him home. Jack's kindergarten class had a celebration day when he returned to school. They called it "Jack T Day" and Jack was the important person in the class. He was so proud of being the line leader all day, of having special snacks, and showed us the cards his classmates had made for him. What a great memory for him! He really is a Histio Hero!

The novelty of Mr. Port being home has worn off. We are also thankful for that. Today Jack has a check up with the surgeon to make sure that the incision is healing properly.

The new photo on our site marks one special day in our family - Jack's one year remission anniversary on October 1st! We celebrated with cupcakes and as you can see, Jack enjoyed them.

On that same day we met with the pediatric surgeon who will remove Jack's port. Jack's surgery is scheduled for next Wednesday, October 22. We ask once again for your prayers on that day so that Jack's surgery goes well and he recovers quickly. He is excited to meet "Mr.Port" and his surgeon assures him that he will be there in a jar right next to him when he wakes up after surgery. Jack told us yesterday that he thinks we should have a welcome home party for Mr.Port!

We are busy and blessed doing normal things here at Camp Thompson. We went to see Ryan at college a couple of weekends ago. We watched Sam play more soccer. We visited with good friends and family this weekend. Jack's kindergarten open house is tonight at school. He is very excited to show us his classroom and all he has learned so far this year. We planted 100 bulbs this weekend. Jack loves gardening! As we planted the bulbs, thoughts of the future came to mind.

Fall planting allows you to look towards the future with faith. These bulbs are now planted deep in our garden beds, waiting for the seasons to pass. The chilly nights and frost filled mornings that are on their way here in the Midwest. The frozen ground, covered with piles of Chicago snow will lead to muddy days as the storms of spring come our way. And then the air will change. And Jack will keep peeking to see if his bulbs are ready to greet us, bright flowers of hope as another spring arrives.

One month since we last updated and Jack is thoroughly enjoying kindergarten. He loves going to school and taking the bus home at lunchtime. He cannot wait to play outside and is even starting to think about what he wants to be for Halloween.

Our first order of business is to thank everyone for the support they gave us at the 2nd annual Histio Heroes 5k! It was a great success and to date, with all of your help, we have raised over $30,000.00. Stay tuned for pictures that captured the wonderful day had by all! Thank you for your support to make finding the cure for Histiocytosis a reality.

The second reason we are updating today is because Jack had a check up at University of Chicago last Friday. Thursday night Dr. Ruth called to let us know that she had decided it was time to do the annual check up to see what was going on in Jack's body one year after treatment ended. Yes - analysis of his body to see if he has held the disease at bay and made it to the one year remission marker. We pointed out the date of his last treatment was 10/1, so it was not quite a year of remission yet and asked if we should hold off. She reminded us of the art in the world of oncology and that a couple of weeks most likely would not make a difference.

Waiting for scans and such is very anxiety provoking for us, so we were very grateful that we only had one night before the imaging and other tests were to take place.

So we started our Friday with imaging. Jack had lots of questions for us while he lay on the imaging table. "Why is this table so hard?" "How many pictures will this machine take?" "What happens if Dr. Ruth sees more boo boos?" That last one was a hard one to hear. We told him she would put medicine in Mr. Port again for a while and it would make the boo boos go away.

Dr. Ruth looked over the images and told us they looked good but no oncologist gives the all clear without the radiologist doing their read. They did it for her (she sat right with them through it all) and they actually said that the tumor sites looked "way good!" Dr. Ruth was pleased to see so much healing going on for Jack. She said there was so much more healing happening than the last time imaging was done. It validated all the blood work and exams and behavior observations we have had.

So - we officially have made it through the first year. It is important and here is why:

There is a 20% incidence of reactivations in the 1st year off therapy,10% second year, 5% third year and then very small numbers. Most children have only 1 reactivation/relapse (which Jack has had).

We are to move forward with surgery for port removal and it is to be done within 4 weeks. Dr. Ruth said we are getting to the point that the risk of infection from having a port in Jack's chest is greater than the benefits. And a bit more good news. One of their pediatric surgeons from the University of Chicago works out of a suburb much closer to our home. So she would like us to work with him for the removal. This means we are 15-20 minutes away from home after the surgery is over. That would be so wonderful. We would feel no pressure to get home before the rush hour traffic that plagues the city of Chicago. That can take hours for us.

So...now what? As we continue praising God for this healing we are trying to figure out.... How do we celebrate? Cupcakes for sure!!!!

We want to thank everyone for the prayers that got Jack where he is today. Thank you so much!

One year of no boo boos. One massive step forward in the fight to beat Histiocytosis. Hip Hip Hurray!

Love,

"Life is what happens to you while you're busy making other plans." - John Lennon

By the time you read this, we will have one son in college, one son in high school, and Histio Hero Jack will be in kindergarten. We will be holding our breath, riding the wave of change that is happening to our family. We will be hoping that our Ryan makes wonderful choices during his first semester in college, and has a great time doing that, and that he is blessed with the coolest, funniest, NIU caliber type of roommate. We also are moving into the world of high school athletics as Sam made the high school soccer team. Sweet Jack will move on to kindergarten.

We are embracing kindergarten. Secretly, we are holding our breath, hoping to make it to September 1 - 11 months of remission, and October 1 - an entire year of remission. But, we are also going into kindergarten, feeling like we have a secret that we do not want the world to know about. We are looking forward to the pure normalcy that all these changes bring to our family. We are hoping that people only know Jack as Jack Thompson, not Jack the poor little fighter with Histiocytosis. That is our hope. That the continent of Normal is our destination, and that we are leaving Holland forever. And all those children and parents in kindergarten never even know that Jack and his family went to Holland.

Stay tuned as the next couple of months unfold and we receive our itinerary.

Details for our chance to change the outcome for others diagnosised with Histiocytosis are found in the link below. Come join us for our Second Annual Histio Heroes 5k on September 21, 2008 - and see which Thompson actually runs the race:

Slow and steady wins the race.

That has been our mindset on Jack's remission journey. We have taken this remission path one step at a time and tried to enjoy what we were given - one good count, one day without any medicine at all, one day of life without a compromised immune system. Today we celebrate that Jack has made it further into remission than he ever has before. Today we celebrate 9 months of remission!

Jack had blood work done last week and his counts were magnificent (hemoglobin 12.3 - yahoo!! platelets 350 and wbc 8.0). His body is holding its own - and we love seeing that!

Today we celebrate - 9 months of health inside Jack's body!

The magic cream worked wonders yesterday when Nurse Mary Ann came to access Jack's port for blood. We are so glad to know that his cream works and will be sure to bring it to his next appointment with Dr. Ruth so Jack can feel as little pain as possible.

We are just thrilled to report that Jack's counts are awesome - 12.4 hemoglobin (yahoo!) WBC 9.1 and platelets are 395. It has been a long month of waiting for this blood draw. We have tried to have faith that nothing LCH related was going on but it was a month that had us shook up around here. Thanks to everyone who sent their wishes and prayers to Jack and our family. We really needed them to get through this long month.

Nurse Beverly called to say that our next appointment will be in July, right around the holiday. We are not sure of the date yet. We have to sync up schedules and make the appointment today. We also are waiting to hear about whether or not Jack will need his port accessed and another blood test between now and then. We wanted to be sure to share the good news and new photo of Jack with all of you right away. We will be sure to put an update here when we find out the next date for his blood work and his appointment with Dr. Ruth.

Allergies! Who would have thought they could be so exciting!

Let us explain .....

Since our last update, Jack has been very tired. And cranky. And once complained of a head ache. Provide this information to parents who are already "concerned" about a low hemoglobin count and the result is lots of worry for Mom and Dad.

Jack had his kindergarten physical yesterday. We shared the above with the doctor and after the exam he told us that he thinks Jack has seasonal allergies. He recommended some over the counter allergy medicine. We will try it for a week and see if it gives Jack any relief.

Jack did not like having his port accessed or his labs drawn Monday when we went to see Dr. Ruth for a check up. We had left our "magic cream" that numbs the area at home and the hospital provided one to us. It was a different cream - not the EMLA cream we were used to. He cried each time Nurse Beverly started to poke him. The needle that is used to access his port it much larger than a needle any of us have for a blood test so if the area is numb it really does hurt - honestly the needle is pretty large. It just broke our hearts. He has never ever cried during a port access.

When we got home our home health care nurse shared that some of the numbing products work well on some children and others do not. So at least we know what happened and can make sure Jack has the right cream each time he gets a poke.

We left with instructions that we are to make an appointment for 10-12 weeks from Monday - always good news when the appointments are further between. We were so excited!

Later that day Nurse Beverly called and let us know that Jack's counts were in. The hemoglobin dropped from 12.4 to 11.8. (For those count watchers our there his WBC was 7.8, platelets 411, and his ANC was the highest it has been since he stopped treatment in October - 2340). Of course we were concerned to hear about the drop in the hemoglobin over the course of one month. Dr. Ruth did call us later that night when she heard we were concerned and said that the hemoglobin is a soft data number and that unlike adults children's hemoglobin fluctuates quite often. She said she was not concerned that Jack's LCH was activating. She was so kind to make that call to us and we were quite reassured by it.

We will have blood work done each month until our next appointment. If you could we would appreciate your prayers for Jack to stay in remission and that his hemoglobin rises we would really appreciate it. Thanks so much for checking in on Jack. We are grateful for your prayers and support.

Love -

Time is sure flying! We are now into month number 5 of remission, and passed another round of blood work with good news. Great news, actually. Jack's counts continue to improve, including the hemoglobin we keep watching which was at a wonderful 12.4! Thank you God!

We are back at U of Chicago for a visit in April. After that visit, if things continue to go well, we will be able to push out the visits a little further. Currently Jack has to be seen every 6 weeks so we are grateful for the steps that keep reminding us that we are on the remission path. We might be able to go 8 weeks between visits! That would be something!

Jack was assessed again at Marianjoy for his neuropathy. It is getting better in some places like his feet, which is great news. His hands are better in some areas. The tips of his fingers, however, seem to be affected a great deal. The doctor thinks that Jack cannot feel his fingertips right now which makes simple childhood activities like coloring a challenge for Jack. We are told that it can go away or that it could stay. We will continue to work at home and with an occupational therapist to help Jack through this side effect from the chemotherapy. We hold on to the repeated things that Jack has shown us - he always comes through these challenges at his own pace and in his own way.

Happy Birthday Jack!

Today is Jack's 5th birthday. He started the day early, where he woke up and told us that he does not "feel 5". He then asked if he could bake his birthday cake.

February is action packed for Jack. This month:

- Jack turns 5!

- We will be registering Jack for school. Kindergarten Round Up - where Jack will be able to see a classroom and meet some teachers - happens later this month. Our district is going to change the boundaries for the elementary schools so we are not certain which grade school he will be going to. Everyone says this about their children, but we really cannot believe he is going to kindergarten in the fall.

- Jack met with an occupational therapist in the school district about the impact the neuropathy is having on his fine motor skills.

- Jack will have a check up on Monday with Dr. Ruth. Our understanding is the appointment will include only blood and urine testing - no imaging at all. If things are still going well, Dr. Ruth may extend the time between visits which would be just wonderful. We also have to have Dr. Ruth fill out special forms for school registration. Since Jack was diagnosed, he has not been able to be vaccinated. Dr. Ruth does not want him vaccinated until he has been off of chemotherapy for 12 or more months. The school will need to know this and we are hoping Jack can be in a classroom with other children who have all the vaccinations so that he is less likely to catch the chicken pox, measles, mumps or rubella. We do know this will not eliminate his risk for catching these, but we are told it could decrease it significantly so that is all we can ask for right now.

- We have to schedule a physical for Kindergarten. Wow! It has been a very long time since Jack has been seen for a well child check up.

We realized that on the 17th we will have been on this journey with Jack for three years. We are so blessed to be the parents of Jack who has battled many things over the past three years. It has been quite a ride, but it all comes down to strength. The strength to go through another scan, or surgery. The strength to wait for the results. The strength to give the yucky medicine one more time. The strength to accept that prayer works. How did we find the strength to keep on going? Well, we found out we were stronger than we thought thanks to the strength of one amazing little boy.

Happy New Year - 2008!

Wow - we just realized that we have not updated Jack's site with information about his last visit to U of C on 12/17. Sorry about that! We were all enjoying the hustle and bustle and celebrating that went along with Christmas around here!

Our appointment was the quickest we have ever had, which was a nice surprise during the holiday season. Jack had an exam with Dr. Ruth and then labs were done. Dr. Ruth told us that all looks great with Jack. His counts came back good - with a slight dip in his hemoglobin which she tells us she is not concerned about. So again, we are going with the leader of the treatment team and not worrying about it - although Jack is now eating a lot of vitamin fortified cereal :). Jack will have labs in January when his port is accessed and we do not have to go back until Feb 12th, or somewhere around there!

The holidays were magnificent. Just incredible. We received and exchanged way too many gifts and way too many get togethers but it was so wonderful to celebrate. As a family, it seems we were all just ready to celebrate and have fun.

Jack did get the croup during New Year weekend which did lead us to a few trips to our local ER. The croup was making it hard for Jack to breath. Of course this is scary stuff but he is doing fine - and - this is normal childhood stuff. Yes you read that right - normal childhood stuff! Hooray! We followed up with our pediatrician and jack is just fine. He also reminded us to come back in February for Jack's 5 year old well visit - and his Kindergarten check up!

It was so odd to go to the pediatrician. Since Jack's second birthday we have been on the LCH ride. He is checked at every visit to U of C, but he has not had those normal well child visits at the pediatricians.

Hi everyone,

Jack is doing well. He is clearly on the mend from chemotherapy which is such a great thing for us to see. His hair is filling in so quickly this time. His treatment did not cause Jack to loose all his hair but it really thinned it out. It is so awesome to see it coming in again. We had forgotten how thick his hair actually is!

Jack still has moments where he experiences fatigue. His treatment team told us this could happen for the first year after treatment. That challenges us regarding activities such as preschool. Jack is in an afternoon preschool and there are some days that we struggle with whether or not to send him. Is he too tired to go? He actually misses preschool when he is not there. Once or twice he has had to miss school because of something going around his class, and he was very disappointed.

Jack actually went sledding for the first time last Friday with is preschool class. He had a great time. And we had a great time watching him! (Ok one of us watched and one of us was at work). He and one of his good friends went down the hill together, screaming for joy all the way. It was just magnificent to see Jack doing ordinary things in an ordinary way. Jack also saw Santa this weekend. He would not sit on his lap, but did talk to him. When Santa said he could not hear what Jack wanted for Christmas, Jack moved forward and stood next to Santa and talked to him about his list. Again - another joy to see. Can you believe that we forgot to bring the camera to both events ??!!??

We are still in occupational therapy for the neuropathy. Recently, Jack asked Ryan and Sam to play some of the games that he plays in therapy. This is great since he thinks of them as play and not therapy. After the first of the year his therapist will assess him again to see how much progress Jack has made in strengthening his fine motor skills.

Someone whose child is newly diagnosed contacted us recently. They are through the most challenging time related to treatment called induction and are on to the maintenance phase of chemotherapy. One of their struggles is with folks they referred to as vanishing people. People they thought they would be able to count on during the journey that have just vanished. No phone calls, no invitations to get together, no emails, no response to their child's on line journal entries. We tried to acknowledge that yes, this had happened to us. It is a loss and it is hard to understand. But there will be a surprise in store. We shared the surprise that would come when they looked back on the journey and realized that there were folks that they never expected to help them that were now a part of their lives. Folks who did call, and email, and invite them to get together. Folks that live really far away, like in Arizona or Hawaii, who, no matter how busy they are, remember every appointment and check in every time. Or the friends who know you need a night out to listen to live music and keep calling even when you decline several times due to uncertainty surrounding the impact the chemo will have this round of treatment. It is a gift for us to be able to support another family during the beginning of their journey.

We are happy to report that we are taking this remission journey one day at a time. That is going well. The anxiety we experienced the first time we were on the remission journey was so challenging. This time we have been blessed with a type of acceptance that is hard to explain. We keep reading about histiocytosis to stay informed in the event that we have to make another treatment decision for Jack. We are just finding it easier this time to walk the remission road. Hard to put into words, but nevertheless something we are quite grateful for.

Next Monday we are off to see Dr. Ruth and Nurse Beverly for a check up. No scans or tests - just some blood work and an exam. We will update Jack's journal after the appointment.

Thank you so much for checking in on Jack!

~ Jeff and Melissa

JACK'S LCH TREATMENT IS OVER.

This round of treatment has been successful. The skull tumor that was discovered in April has gone from the size of a quarter to the size of an eraser. It is healing. Jack's hemoglobin was 12.3 - another very positive sign that the disease is inactive. We also looked at the femur (thigh bone) that was the first tumor that Jack had. It required repair surgery and we had been told that the bone may be damaged permanently. It has totally healed - took almost 3 years but we were all very surprised to see this unexpected positive development!

Dr. Ruth was very encouraged and told us that it is time to end treatment. The only thing left to do now is wait and pray. Every prayer is heard and we appreciate every one of them! The waiting to see if the disease is really behind us can be hard, but one of the gifts on this journey has been our ability to learn to wait with patience. Of course we know what life is like when treatment is over. Every bump and pain is up for analysis and causes us concern. But we are blessed to be moving on towards the goal of graduation to the survivorship clinic. 24 months disease free and we will move to that clinic. One month down already since Jack's last treatment was October 1.

Jack will be followed closely for the next year. We will go back in 6 weeks for a check up. Just some blood work and a once over by Dr. Ruth. If that goes well, we will go in for another check up 6 weeks later. Dr. Ruth is not certain when she will scan Jack next. The earliest will be 12 weeks from now, but only if Jack displays signs that concern her. She has not told us when she will scan him next as she is very concerned about radiation exposure. We trust her and her clinical judgment. She is also willing to discuss risks and benefits of treatment with us so if we are concerned she is open to discussion. However, she is focused on doing all she can to prevent secondary malignancy related to Jack's treatment and we are very grateful for that.

Jack's immune system has about six to twelve months before it returns to normal.

We are just taking in the news and trying to enjoy this positive time. We know the reality of reoccurrence for LCH and yet feel hopeful that on this day we can say that Jack is disease free. We will take it one step at a time, one foot in front of the other just as we have done during treatment. Every day that we are one more step out of the woods is a beautiful day for all of us!

A journey like this is full of surprises. Those of you who have done everything you can to support our family during 2 rounds of chemo have touched us forever. Thank you, bless you, and know your support will never be forgotten.

Jeff noticed that Jack had a slight fever at about 1:00 Saturday afternoon. It was not quite the 100.5 cut off where we have to call the Hem/Onc on call to determine if a trip to the ER would be required. Because Jack has a port, any fever buys us a ticket to the ER.

So as the afternoon went on, and Jack kept coughing, we wondered about giving him Tylenol and a cough suppressant. Again - everything has to be approved by the treatment team. Many over the counter medications change blood counts and impact blood cultures. Time to call the Hem/Onc and of course accept that we were on the way to the ER.

We were grateful that we were able to go to our local ER. After blood counts and an examination, we were sent home. Jack sounded good and we were told we could give him Benadryl at bedtime to help dry him up.

Sunday night Jack woke with a 101.2 fever. Another call the Hem/Onc fellow on call. We were told Jack that we could stay home so long as we followed up with the team in the morning.

We did that yesterday. Dr. Ruth had Jack assessed by his pediatrician to help us avoid a trip to the U of C. And we found out Jack has pneumonia.

Blah. He is feeling pretty yucky. We started antibiotics last night. Jack's counts were not too low - (for those count watchers ANC 1100, hemoglobin 12.1, WBC 5.6). The team is happy that his ANC is over 1000 but told us it could take him longer than his peers to beat this. He also has to be significantly better by Thursday.

Treatment Week - Last week was treatment week and we are grateful to wake up today and have it behind us. That and a Bears win over Green Bay sure make for a good start to this week.

We made the trek to the University of Chicago last Monday for this appointment. Treatment as usual - no tests, no imaging and no scans. That will be saved for November 5. On that day Dr. Ruth and the team will decide if we are done with this phase of treatment or not.

Jack did well, although he became quite upset when the nurse had to leave his port accessed for a bit. Jack's regular nurse is Nurse Beverly and she had the day off. Jack missed her and the fact that the other nurse had to leave the needle in his port for a while was not something Jack was happy about. This week the chemo really zapped Jack of energy and he took lots of naps. Despite the naps he still seemed very tired.

We did discuss neuropathy with Dr. Ruth again. Neuropathy causes Jack to feel discomfort in a muscle or joint although the damage being done by the chemotherapy is really being done to the nerves going to the muscles. She is concerned that his symptoms are increasing, and almost held the chemotherapy back this week. The decision was made to go forward with treatment. For the first time, Jack complained of symptoms. Previously we had known about neuropathy through an assessment with Dr. Ruth and the symptoms Jack had displayed were muscle weakness. This has changed. Jack walked up to us on Tuesday and said, "Hey my hand feels fuzzy!" while pointing to the palm of his left hand. He had these symptoms off and on during the week. We have been given a variety of exercises to use to help Jack and he is continuing with his occupational therapy.

On the count front, all went well. Jack's hemoglobin dropped to 12.1 from 12.5. Dr. Ruth is not worried at all. So we are not worried either - ok just a tiny bit concerned. But Dr. Ruth and Nurse Beverly both spoke to us and these changes are part of the body's normal ebb and flow. If we were to see a big drop at our next appointment that would be something to discuss. Hemoglobin drops when there is inflammation in the body and LCH causes inflammation in the body.

Thank you for supporting the Histio Heroes 5k!!!

Our 5k run/walk was a huge success. We raised $35,000.00 for Histiocytosis research - and there are still donations coming in! Sam raised $7,600.00!

It was an incredible day filled with more positive energy and joy than we have experienced in a long, long time. Every part of our life was represented and there to support us - friends, family members, medical folks, grad school folks, clients, teens, folks from church and community members. I am sure the list is longer than this but it was just plain amazing to see all these worlds come together. Ryan and Sam learned so much and are already asking us about next year. We ended up having 250+ runners and walkers - and that is considered a huge event by racing standards. We were told at race director training that we should expect 50-100 runners and walkers and to break even the first year. The weather surely helped us as it was one of the most beautiful Midwest autumn days we have had in a long time.

We met several other families who had children with histiocytosis. There were 17 children in all at the race. The Histio Heroes were the only participants that had blue shirts on so they were hard to miss. And many of their families came with shirts on that they had made to support their family member with histiocytosis. This is a day we will never forget. So many touched by histiocytosis, all coming together to support their loved one and to let the world know they want a cure.

We could go on and on about this event as it touched us so much. The photos are coming together and we will be sure to post some of those soon.

Thanks to every one of you for supporting this event. Your support allowed us to make our dream of funding a research grant come true - and then some! This is just awesome!

"Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." ~ Margaret Mead

Someday we can tell Jack that his family, friends and members of the community helped find a cure for histiocytosis. Wow!

Hello there everyone!

This is the week of treatment - and of our Histio Heroes 5k. What a week!

Treatment was delayed until Tuesday so that Jack could start preschool Monday feeling his best. He waved when Melissa dropped him off and had a great first day.

Tuesday began treatment and his counts on the hemoglobin front were excellent! It was 12.5 down one tenth of a point which is most likely part of the normal fluctuation in anyone's body. His ANC is down to 1600 but still strong enough for us to go about daily business. We have sent out the strep and chicken pox alert to everyone that comes in regular contact with Jack and we are using lots of hand gel but overall we are going about our day to day routine.

We are busy working hard to bring the 5k to fruition. There are lots of details to take care of to ensure each runner and walker have an awesome experience, but we are so grateful to do this given how much support we have had from this community. We are still fundraising and we are watching Sam's fundraising page as well as our Team Jack page and seeing the totals climb daily. Sam has exceeded his third goal and as of this morning he is over $5200.00. What a hero! Team Jack's page has hit the $4600.00! This is amazing! $9,800.00 for histio research!

We can tell you that to us, that number is the embodiment of hope...it is a tangible way to SEE that Jack's future might not involve years of toxic drugs. It is a ray of hope that really helps families like ours, and many who face even bigger challenges with histio. Sometimes the path we are on seems very, very long and dark, and knowing that so many are working so hard to do the research needed to cure histio is just amazing.

Thank you SO much to everyone who had already donated and to those of you who are going to..we are so thankful to you. We don't have the right words to tell you how grateful we are for your help. Our hearts are full of gratitude for all of your kind words and support...

See everyone Sunday!

Hello there everyone!

The Magic Number is hit again!

Hemoglobin - 12.6 - The highest in Jack's life!!

This week's treatment seemed to be quite hard for Jack. He usually is happy to see Nurse Maryann when she comes here for treatment, but everything upset him this time. He even seemed to be uncomfortable from the poke to Mr. Port which is usually not the case since we use a numbing cream to keep the pain away. Not sure what the trouble was for him. Maybe he is just tired of treatment. He usually is so easy going about this whole experience that it surprised all of us.

His blood levels had mixed results this time. His ANC is lower than it has been on this round of treatment but again that means the chemo is doing its job. Still need to be a bit careful with exposing him to germs as he is close to being under the safe zone of 1000+. On the other hand - the AWESOME news is that Jack's hemoglobin (iron) continues to rise to the highest level he has had in his life - 12.6! Remember that the LCH impacts the hemoglobin when it is active. According to Nurse Beverley, Jack's bone marrow is making more hemoglobin as it is not having to deal with the impact of the disease. This is such good news.

Jack's next treatment is scheduled for the week of September 10.

The Histio Heroes Update

Have you marked your calendars? Are you going to be at the Histio Heroes 5k in Batavia on Sunday September 16 at 8 AM?? We hope so!

We are really going to try to rev up our fundraising efforts for the Histio Heroes 5k we are hosting with Pam and Joe Kurtz. We REALLY hope to meet our goal of $5000 this year and would love to even top it! So, if you were ever thinking of donating, please take a minute and donate online at either link below. Don't put it off any longer!!! We originally had one link for the family but Sam has decided he wanted his own fundraising page to try to fundraise for a cure for his brother. We could not be prouder of him - or more amazed by how successful he has been! He is in the lead in what has now become a family competition to see who can get to the $5000.00 marker first! What a great competition for a great cause!

While a cure seems to be on the horizon, we can't wait 10 years or so for research to be completed. We need a cure yesterday but will take it today. We need this disease to stop attacking Jack's body. Remember - this is a situation where every dollar makes a difference. Without governmental funding, our only hope for a cure lies with friends and family. All donations are 100% tax deductible and will go directly to research. Please, please, please help if you can. $5, $25, $50, $500... whatever you can do...anything and everything will make the future brighter for Jack and all of the brave kiddos fighting for a healthy life.

We thank you all for your continued prayers and support that sustain us on this journey.

~ Jeff and Melissa

Sam's Fundraising Page:

Hello there everyone!

Jack is on day 4 of 5 for treatment week. His counts were low this week - all except that hemoglobin. It was 12.3 - the highest it has been in his life! Wahoo! We did a happy dance around here. We hope to see that number above 12 for the rest of his life!

However, the chemo is taking a toll on Jack. He wakes up each morning tell us, "I am just so tired" and talks about that all day long. We know that the chemo is doing its job. It is knocking down that immune system and making him tired. Add to that the restless sleeping from the steroids and he is just plain old wiped out. But being our fighter, he is happy most of the day, every day, despite having to battle through the effects of chemo! What a guy! We are looking forward to this weekend so Jack can get better quality rest. We'd like to say that we have only three rounds of treatment left, but we have stopped looking at this journey that way since LCH has a mind of its own.

A big thank you to every single one of you who has supported us in our fundraising efforts. We are only $100 away from the $2,000.00 marker! So close to the half way point towards our goal. We could not do this without the generous hearts and spirits of all of you who have contributed. Special thanks to those of you who are looking into match gift programs at your places of work. We know that it takes more time and paperwork and we want you to know that we so appreciate it!

More good news on the race front here - many organizations are stepping up to offer prizes for a raffle for runners and walkers who are at the race! Finally we are moving slow but steady towards gathering up some items for a silent auction. Stay tuned for those details and know, without you, we could not create the hope that in this lifetime we will find a cure for Histiocytosis.

It's Friday again and this particular day begins the rituals we go through to get prepared for treatment week next week. The chemo will arrive later today, and we already placed a call to the pharmacy for the medications we need at home. We also have purchased those foods that our steroid boy craves while on treatment including goldfish crackers, orange juice, and chocolate covered cranberries.

As we go into our next round of treatment, we feel the summer closing in on us. It has been a glorious summer. A summer full of plans and anticipation. It was amazing to see Ryan and Sam pace back and forth last weekend, waiting for the mail. We cannot remember waiting for such an exciting thing as a book like Harry Potter when we were children. To watch two teen boys pace the foyer of our house, and continue to look out the door for the delivery of this long awaited book was awesome! Of course this summer has also had us in the car way too much running here and running there. Lots of what we refer to as "tag team" parenting too - where one of us arrives home and the other leaves. But we have had a wonderful summer full of sun, sand, camps, summer jobs, gardening, running, music, interviews and even some time for friends in between.

We think the feeling of the summer closing in on us has more to do with knowing, that once we are in the full swing of things this fall, it will be time to peek into Jack and see how effective this round of treatment has been for him.

It is an odd concept to share how much we have enjoyed not knowing what is going on in there. It sounds so odd, even reading it seems strange. But it is true. While each treatment week and its rituals remind us we are fighting LCH, that is it. Five days of treatment and then waiting for the next treatment. Get off the chemo road and go back to the road of everyday living. It has been freeing not sitting and waiting for the next set of tests and scans but just doing treatment. When Dr. Ruth first told us this is how it would be this go around, we thought it would be agony not knowing what was happening inside Jack's body. That just has not been so. It seems like we just turned 17 and someone extended our curfew. We now have more time to live our life than experience the anxiety that comes from knowing that everyone else is doing other things besides fighting a childhood disease while you wait to find out how your battle is unfolding.

We also have so much to celebrate and be grateful for! We are thrilled to report that, between the two fund raising runners in the house, we have raised just about $2,000.00 for histiocytosis research! We also secured another corporate sponsor for the race! And we have only just begun to fundraise! Thank you to those of you that have pledged one of our runners. For those who are going to run and fundraise, please let us know if you need any help with your fundraising efforts. We would be more than happy to help you. Thank you to all of you who have helped us kick off our fundraising drive. We are on our way to our goal and we are SO grateful for all of your help! It means the world to us that you are so kind! A cure is on the horizon and we need to get there sooner rather than later!

If you still are interested in contributing to help us reach our $5000.00 goal, please click on either link below:

Recently, someone who had not seen us in a while, bumped into us. They asked how Jack was doing, and we shared the progress we have made in our current journey with chemotherapy. We are excited to be past our half way marker on this journey, and shared how proud we are that as a family we are really just "going with it" this round of treatment. Jack, Ryan and Sam are all enjoying age appropriate summer activities - keeping us flying by the seat of our pants taking them back and forth. It has been a wonderful summer, and each of the boys is a gift to our family. The comment that followed is one that we have heard many times over - "I don't know how you do it. I just couldn't make it through what you are going through". We thanked them for their concern, and prayers, and went on our way.

We hope that by sharing our story here in our blog known as Jack's Place, you have learned that this is not so. You could do it if you had to do it. You would find comfort in the friend that calls within 48 hours of each treatment, asking how things went, wondering how Jack is doing, no matter what is happening in their world. They are never too busy to allow you to talk about what is happening, or they are understanding enough to know that sometimes you want to talk about other things. You would really find strength in the prayers many are offering up for you and your family on this journey. You would be inspired by the children and families that are further into the treatment process than your child is. Or maybe it would help you to know that another family had the courage to try and raise $100,000.00 to research a cure - and they succeeded. You would take it one step at a time, walking the path before you. You could do it, and you know what? There would really be moments of joy.

Joy was seen on Jack's face Monday when Miss Jenn brought him his new beads for his Beads of Courage necklace. They played with the beads, named the beads and Jack exclaimed that he "just loves my beads". This necklace continues to show each of us what Jack is accomplishing. We do not know how long the necklace will be - most recent count by Jack is 158 beads - but it is tangible and allows us to see the fight in action.

Jack's exam went well and he even got the giggles during the tummy monster part of the check up. His blood work is pretty good, although the hemoglobin count is down to 11.5. Nurse Beverly promised a phone call to us today to explain how this fluxuates and why the team is not concerned that this is something we should worry over. So we are waiting to hear from her.

Neither of us is patient, and we know that we just don't know if the LCH is making a move on our boy until either he displays outward symptoms or we complete treatment in October. But, these counts drop for us all - and most importantly, the treatment team tells us not to worry. So, we have to let go, let God, and enjoy Mr. Symptom Free. It is a challenge to sit and wait to find out what is going on when a blood count drops. We have learned to wait for treatment, wait for tests and test results, wait to see if the disease would do anything when Jack was in remission. We have been challenged along the way and one of the virtues we have been able to develop on this journey is patience.

First things first, in case you don’t have the stamina to read this entire message, we didn’t want you to miss this. The plans are really coming together for the first Histio Heroes 5K in Batavia. Please spread the word to all of your family and friends! We have the website up (www.histioheroes.com) and online registration is now open! The big day is September 16th, 2007, which is close to 2 months away. So we hope your calendars are marked and your running (or walking) shoes are ready. There will be a silent auction with some cool stuff, including some memorabilia from some of your favorite Chicago Cubs! Plus, we are hoping this will be a good fundraising event for the Histiocytosis Association, so everyone who registers for the race can also set up a fundraising page through active.com. Everyone who raises more than $50 will be entered in a raffle, and there will be prizes for the top three adult and child fundraisers. Please let us know if you need any help getting your online fundraising page working. If you can’t really imagine walking or running 3.1 miles, we still need many more race day volunteers, so please let us know if you would like to help out.

The Team Jack fundraising page is up and ready to go - just click on the link below to see it:

Another week of treatment is behind us - and we are off to the beach for a little rest and relaxation before the next round begins.

Last week was the first time that Jack ever really expressed his views of chemotherapy.

Now that he is verbal, he can tell you how he feels, and while he is funny and happy most of the time, we have never had to hear how he feels about treatment. This week that changed and we found it challenging to hear how yucky he feels during treatment. He has treatment every third week for 5 days and each time he has a harder time with the side effects of the medicine and candidly it seems like they are getting worse. For example, he usually begins to have trouble sleeping by the end of the treatment week. Last week the steroid restlessness started on day one and he had a terrible time sleeping.

Jack adores his home health care nurse - Nurse Mary Ann - but when she rang the bell, he opened the door and then closed it. He opened it again and told her "I do not want you giving medicine to Mr. Port! Please go home! " The port is in Jack's chest, under the skin, and his chemotherapy is hooked up via a needle placed in the port. We are so fortunate that Nurse Mary Ann has a good heart and a good amount of patience. She spent about 30 minutes just playing with him and talking with him about Mr. Port and the yucky chemo. But in the end, he smiled, and when through his infusion with his good friend Nurse Mary Ann making him smile the entire time.

Jack takes his steroids three times a day each day of treatment. On Thursday morning, Melissa was giving him his first dose with his breakfast. "Mom, I think that medicine is making me crabby". Melissa confirmed this for him, and they wrote out how many more doses of the "crabby medicine" was left for the week. That helped, and for the rest of the week he did want to tell everyone about how his medicine makes him crabby. One does wonder what this experience is doing to shape him. We are very grateful he can tell us how he feels.

Good news on the blood count front - not only were his white counts (ANC) great meaning his immune system is strong - his hemoglobin was 12.1 again!!! Yahoo! Histiocytosis, when active, impacts the platelets and the white blood cells. They go up while the hemoglobin goes down. We saw again that Jack's hemoglobin was up very close to the normal range and that both platelets and white cells are down.

The plans are really coming together for the first Histio Heroes 5K! We have the website up (www.histioheroes.com) if you'd like to read about it. The big day is September 16th, 2007, which is only 3 months away. Stay tuned for another update with details about the race, Melissa's fundraising efforts, and how you can help.

This week showed those of us in the histiocytosis world the ugliness of the disease. LCH took the life of another boy, young and loved, who fought through a liver and a bone marrow transplant.

We have not written about these losses in the past. Most likely, it is something we do not want to think about and we do not want you all to think about. While having a child on chemotherapy is most likely the nightmare we have that you cannot imagine having, losing Jack to LCH is our worst nightmare. Each time we hear about the LCH beast winning, taking another life, we are at a loss for how this could be. Where is the cure? This is disease was discovered in the late 1800's. Where is the cure?

We live in a world where communication happens across oceans and continents in milliseconds in a way we never could before imagine. We have access to information on the Internet at any time, or any place. We carry around phones that show movies, or have access to the internet, and allow us to communicate with work associates or loved ones whenever we desire. We walk around listening to thousands of our favorite songs coming to us from a little white box that we can carry anywhere. And yet, we sit watching this disease progress, attacking the bodies of our children.

We suppose a contributing issue is that there are not enough children with histiocytosis to cause the government to stand up and take notice, to help fund the research of a cure. We know that the leading researcher in the United States has the National Institute of Health taking notice at one of his histiocytosis research projects and considering accepting it for funding. Our hope is that the study is successful and raises enough awareness to bring government funding to finding a cure. And that the cure comes soon.

As our friends and family, we do not want to worry you or share our dark days with you. But if we don't how can we make you aware of what LCH is really doing to some children? Or inspire you to help us find a cure? There are times when it seems ridiculous to us to think we could really make a difference in the race to the cure. Us? Two people who are concerned with causing too much worry for their family and friends if they know children lose their battle with LCH? How much the idea of doing what we can to find a cure takes us out of our comfort zone, and even could make some of our friends think we have become zealots in seeking this out?

We are not experts, or even great at creating awareness about Jack's disease. We are just in a strange world trying to make our way through it. We try to keep the other parts of Jack in the forefront and the LCH in the background. We tend to prefer to talk about swim lessons, summer vacation and what all of you are doing in your lives when with you rather than LCH.

But there are days when it seems time to remember the loss this illness causes. Today is one of those days. We have to find a cure. We just have to.

If children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to hope?

We have two options, medically and emotionally: Give up or fight like hell! ~ Lance Armstrong

This week is treatment week. Jack had his chemotherapy at home on Monday. Nurse Maryann came to the house despite it being a holiday. We also started the drug therapy that we do at home which includes the steroids. Jack is quite fatigued this week as he struggles to get to sleep each night. That is to be expected and we know that after Friday when we end the treatment week, Jack will have 2 full weeks to rest up before the next treatment begins.

We did get what Dr. Ruth is referring to as "excellent counts" this week. When Jack has chemotherapy, his blood is drawn and many things are measured. One item that is measured is Jack's hemoglobin. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. The iron contained in hemoglobin is responsible for the red color of blood. So this count is really what we refer to as his iron levels around here.

Jack's hemoglobin is always low when his LCH is flaring. In fact for most of his life his hemoglobin has been low which probably means that his body was working through the disease for some time. His doctor said that when the disease is active the there is a reaction in Jack's body that causes his hemoglobin to drop. The normal range is 12-18 for a child Jack's age. Jack was always at the 10-11 range, even while in treatment.

When we discovered the most current tumor in his skull, Jack's hemoglobin level was 10.8. This week he was at 12!!! According to Dr. Ruth and Nurse Beverly, this is something to celebrate as this is a sign that the disease is retreating some, or not as active as it was when Jack reactivated. We continue to hope to see that level nice and strong at a 12 or higher as Jack's treatment progresses. We have been told to celebrate the small steps and this is one piece of good news that we are happy to have received this week with Jack is in his steroid phase.

On the home front, summer is about to start for everyone around here. Ryan and Sam finish school next week. Ryan just got his first part time job! He is going to be busy this summer bussing tables at Portillos! Sam has his 8th grade dinner dance tonight and is looking forward to the summer with tennis lessons, church camp, and band camp. Both boys have lots on the calendar already so hopefully we can find some down time and just enjoy doing nothing. Jeff is active in his band, and looking forward to a guys night out tomorrow night. Melissa passed her LSW exam so that is behind all of us as well! Both of us acknowledge the need to plan some vacation time but neither of us has done so yet. Hopefully we do that soon.

We are sorry for the delay in posting Jack's test results. We did not get Jack's results until late yesterday afternoon. Dr. Ruth was sick on Monday and the radiologist wanted time to compare this image to the last one.

Dr. Ruth told us that there is some improvement in the tumor - it is approximately 20% smaller. It is less distinct, and Dr. Ruth reports signs of healing taking place. We are a little wary as well as a little confused by what is used as a marker for "success". Dr. Ruth believes that it is good news. Other indicators of success are also good such as the shrinking of the tumor on the outside of Jack's head (we can no longer feel it, neither can the treatment team) and the fact that Jack does not have any pain anywhere.

This change is not as good as we had hoped for - but good enough for Dr. Ruth to consider it successful. Successful enough to move to maintenance therapy, which is every three weeks instead of weekly. The course of treatment will be longer than expected. When we had first started induction, Dr. Ruth said if induction was successful we would then go to maintenance every three weeks for only 9 weeks. That has changed. We are going to go through that maintenance schedule of chemotherapy for 4.5 to 5 month. This means chemo every third week with a five day burst of the high dose of steroids. Again - we had hope for only 3 rounds of this schedule, but Dr. Ruth thinks we need to do this.

Jack will not be scanned again for some time unless he has symptoms. It may be the end of the summer before we see what is actually happening inside of Jack. As we have mentioned before, Dr. Ruth approaches treatment with a long term, minimalist approach. She is very concerned about the risks radiation poses for Jack and other children she treats. She regularly reminds us that too much chemo or radiation can cause long term damage and higher risks for other malignant diseases such as leukemia and cancer. So Dr. Ruth will not image Jack unless Jack has any pain or symptoms. If symptoms arise, then the treatment will change.

It was challenging to hear what this treatment will look like. If we see new symptoms, he will go through one year of a much more intense chemotherapy regime. He would still receive the chemo via port every three weeks (that is called vinblastine) along with those steroids. But, we would have to add nightly mercaptopurine and weekly methotrexate (both oral). This would last for one year.

We also are challenged knowing that there are other histio doctors and experts that would most likely move to the more aggressive treatment right now. We understand that. We have thought about what Dr. Ruth brings to Jack's treatment and her commitment to work towards remission, the prevention of diabetes insepidus, and future malignancy. Dr. Ruth has more than 25 years experience treating children with blood disorders including histio. She told us that she has had success keeping the disease down and not active using this treatment approach. We are comfortable with her approach at this time. It is hard to be a parent of a child of a very rare disease in which the treatment approach can be different from doctor to doctor. You can end up questioning yourself until you feel sick. At the end of the day we have to go with our "gut" and it tells us we are in the right place, with the right treatment team.

Thanks for thinking of and praying for Jack. We will need those prayers going longer than expected but they keep us going and someday they will bring total remission for Jack. While we had hoped for more healing during induction, he is making progress. Slow and steady is still forward progress.

Treatment four is behind us along with a visit to the University of Chicago. Jack did fairly well with his treatment but was frustrated when Nurse Bianca touched Mr. Port instead of Nurse Beverly. It is interesting to watch Jack express himself and what matters to him during his treatments.

Jack started participating in the Beads of Courage program. This program is designed to support children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Jack met Miss Jenn when we arrived at U of C. We had filled out some paperwork about Jack's medical experiences, listing things like how many times he had been scanned, or when he had a biopsy, or when Mr. Port was placed. We did not expect to see a necklace with more than 100 beads representing Jack's histiocytosis journey to date. It was heartbreaking and inspiring at the same time. The necklace has a special bead called the 100 bead. This is Jack's favorite bead and the one that caused the most awe for us. We could not believe that Jack had been through more than 100 events on this journey. Wow. Just wow.

Jack's iron store study shows Jack at the low end of normal. The range is 20-300 and Jack is at 30. Dr. Ruth is thinking about whether or not she will start iron soon. Jack is fighting very hard through this induction phase of treatment, trying to figure out why he feels the way he does. Four year olds do not have words for the anxious, moodiness that comes from heavy doses of steroids. We are working on helping him with that but relish next week when the tapering of the steroids begins.

Today was chemo treatment number three. Jack was so distressed about it. Thank goodness for the treatment journal that we have kept. This has allowed us to note that the only time he had a hard time with getting treatment last time he was on chemo was during the mid point in this induction phase where he was taking steroids every day.

His blood counts came in a few minutes ago and they were really good. However, we know they are inflated due to the steroids. No restrictions other than keeping his hands really clean and avoiding strep and chicken pox exposure the best we can.

Next week we will go to see Dr. Ruth and Nurse Beverly for his treatment. They are going to do an iron study to make sure that the increase we see in his hemoglobin is not being inflated by the steroids. Jack needs your prayers here. LCH histiocytosis impacts the iron cells of his blood, making them go lower and drop. If they are being raised due to the chemotherapy than this can mean the disease is more active than we thought. If this is the case we may be facing a longer journey in the land of chemotherapy. Let's keep those prayers going that this is not the case.

Generally speaking, despite the heavy handed steroids causing him to eat himself silly, not be able to sleep, suffer nightmares when he can sleep, and being very moody - Jack is doing well. Probably hard to believe if you are not living this with him but it is true. We are so proud of him - how awesome is it to see your child's strength even at the age of 4?? And we are so proud of Ryan and Sam. They are really going with the flow this time and they seem less worried. The four of us seem like a team working towards supporting Jack and beating this LCH once and for all!

Jack and I had lunch today - at Dairy Queen! How many moms get the opportunity to say yes to an ice cream lunch at Dairy Queen instead of thinking "One day I might really say yes to those childhood things once I get all these things on my to do list done" or "I wish I had done that when my children were young". I enjoyed that lunch with Jack today - it was so joyous. How lucky I am! What a gift it was - sunshine, ice cream, and Jack all full of smiles.

Jack is going to be enrolled in the Beads of Courage program at our hospital. He will love this program. You can read about it at www.beadsofcourage.net. What creative people there are in the world who are willing to use their time and talent to help support children and their families during chemotherapy.

Round Two: Week One is Done

Today is day 9 of induction. We have made it through week one of induction, two chemotherapy treatments and are fighting the battle here to beat LCH once and for all. Our family working together are the warriors fighting this disease. Jack is not alone in this fight. We have to beat this and get our life back. We do not accept any other option.

Jack is struggling with the side effects of steroids. We have gained two pounds this week, and have experienced every range of emotions known to a toddler. Even his sleep has been impacted, poor guy. It is hard to see the Jack we know kind of disappear as we go through these next six - wait now it is five - weeks. We cannot wait until he is back to himself!

We are thrilled to report that our Easter was awesome! Aunt Kristen made the yummiest food, the Easter Bunny was generous, and Jack had a great day! He did not seem too badly impacted by steroids that day! Yahoo! Jack also has created a family out of plastic Easter eggs and received two more stuffed ducks for his collection. He loves ducks!

We are desperately hoping for warm weather so that we can get Mr. Energy outside. That would help things a bit.

Thanks for checking in on Jack today.

Looking for wise words to write today. The week has been an unpredictable one. Jack has been having nightmares over the past couple of weeks. Early Tuesday morning - at about 3:30 - he climbed into bed with us, seemingly frightened by a DVD he had watched that day. We snuggled him into our bed, rubbed his back, rubbed his head.

We felt a lump on his head right then and wracked our minds to find out when or if Jack bumped his head. When Ryan and Sam woke, we asked them if he had bumped his head when they were babysitting Saturday night. Since we came up empty handed here, we had to call Dr. Ruth. Off we went for a newly scheduled checkup on Tuesday instead of Friday.

One lesion/tumor. That is the bump we feel. In the skull. According to our test results from yesterday the histiocytosis does not seem to be anywhere else.

We spent the day at the hospital yesterday. Jack got his first chemo treatment then. It was a long day.

Here is what is set to happen:

6 weeks of weekly chemotherapy

6 weeks of steroids 3 times a day along with daily Prevacid to protect his tummy from the steroids and Bactrim to keep him from getting infections.

Scans and check up after the 6th chemotherapy and if the news is good after 6 weeks possibly moving to a maintenance schedule of 2-3 doses of chemotherapy every third week for 6 weeks.

The steroids can make things hard for Jack - they cause sleeplessness, hyperactivity, food cravings and moodiness. Jack did pretty well on them last time so we are hopeful that he will not have too much trouble with them.

We had hoped that we were through the battle with LCH, able to move on with life as usual. Those of you that have been reading this for any length of time know that Langerhans Cell Histiocytosis (LCH) has a bad habit of recurring and this time it has happened to Jack. And so we have to keep fighting, hoping someday to have this behind us.

Hello everyone -

Thanks for checking in on Jack today. The journal update is short and sweet.

Next Friday - April 6 - is Jack's scan and test day. Could you please keep Jack in your prayers this week?

Today I realized that Friday will be here before we know it and that begins the two week countdown.

Two weeks away from the next set of scans. Two weeks away from being close to hitting the 9 month marker indicating that Jack's body continues to show signs that the chemotherapy did its job. Two weeks away from being three months away from that big one year milestone. One year since chemo ended Jack's body was given the chance to see what it would do.

It seems lately that relapses are hitting the histio community pretty hard. That is making the road we are on a bit less clear. We want to stay on this path that we are on. But again, there are some wonderful families who we met at the national conference last summer who have been hit pretty hard with LCH - again. Ivy Kate, Maggie Kate, and Patrick are all having to start the fight all over again.

Leroy Sievers keeps a blog on the National Public Radio website called "My Cancer". So often his blog entries align with something that we are going through related to this journey we are on with Jack. His words today hit home:

"When someone is diagnosed with cancer, one of the first questions they usually wrestle with is, "Why me?" Why was I singled out? Why am I sick when others aren't? But it's not very long before we all realize that this is the wrong question. "Why not me?" is just as fair. There really are no answers to either question. "Why" isn't the point. We have cancer; we have to deal with it. We have to look ahead.

Now that I find myself in this position — of appearing for the moment to have beaten this thing — I find myself returning to that first question: Why me? Why was I so lucky? Why have I gotten a break, when so many others have not? Why can't we all survive?

I guess I do have some survivor's guilt. Though it's not guilt, really. It's more a feeling of deep sadness. Not for myself, but for all of you who haven't gotten good news, who are not going to beat this, even for a little while. There was no answer to, "Why me?" in the beginning. There's no answer now.

Don't get me wrong. I'm thrilled to be where I am. I don't know what's in my future. None of us do. But through this ordeal, we have all been walking the same road, shoulder to shoulder. We all faced the same fears, the same challenges, the same heartbreak. And we all learned lessons we couldn't learn any other way.

Now I feel as if I've stepped off that road. Maybe it's just to rest a little while before I start walking again. Or maybe my path will be a different one. I just know how hard all of you have fought, and how hard you fight every day. I just wish I could bring you to where I am now. You've earned that." -- Leroy Sievers

At the University of Chicago you do not move to the survivorship team until you hit the 24 month mark post treatment. We are one third of the way there. This journal is to update our friends and family of the details about Jack's journey. But sometimes it is for Jack and I wanted to let him know that even on the road to survivorship, you still need courage.

It is March and here in the Midwest we are still experiencing bone chilling cold. Jack has been jumping up and down for days with excitement because the snow is melting and he can see grass. He keeps telling us that it is "spring grass". He also wants to know when "my flowers will be out". We planted lots of bulbs together this fall and he cannot wait until they become flowers. Jack is ready for spring!

We found out a couple of weeks ago that Jack has had some damage from the chemotherapy. Jack has neuropathy. Neuropathy is damage to the nerves in some parts of the body. These nerves send signals to the body to tell it what to do or how to feel. Most commonly, neuropathy happens in the feet and hands and both of Jack's are impacted. Neuropathy can cause the sensation of numbness, weakness, pain and tingling in these areas. It has also impacted Jack's colon resulting in constipation and a huge potty training challenge.

This side effect was discovered during an appointment for Jack's hypotonia. We were at Marianjoy and Dr. Keen showed us how little feeling Jack has in areas of his feet and hands. She also demonstrated the significant muscle weakness he has. Her recommendation was new exercises at physical therapy. In addition, she recommended that Jack attend occupational therapy to help him work his hands and feet with the hopes of bringing some of the strength back. We are hopeful that Jack will gain this muscle loss back but only time will tell. We know God has a plan for Jack and we have to trust that but sometimes it is hard for us to see another hurdle placed before him.

We are on the wait list for OT but thankfully are already in PT with Miss Trinette. She did special exercises with Jack last week. We also are waiting for our insurance to determine if they will pay for benefits for OT since it is related to a medical treatment. Dr. Keen put Jack on some medicine to help his colon. She said to be patient, it could take time for Jack to trust his body sensations again. She promises us that someday soon he will be potty trained.

Jack continues to be a joyful boy. He is so full of love and life. He is enjoying preschool very much. His development has been incredible since he started the school year. He is learning so much and adores his classmates. He loves everything about it except getting out of his pajamas to go!

Jack's next appointment with scans and test are Friday, April 6 - 1 month from today. It is Good Friday. And with all the prayers Jack receives we are hopeful it will be another Good Friday for him.

Love -

Happy New Year! We headed down to U of C on January 5th for our first visit of 2007 to see Dr. Ruth and Nurse Beverly. We cannot believe that come February 17th we will have been on this journey for 2 years. Jack continues to prove himself to be one strong boy.

We will not keep you in suspense any longer as we are happy to report that our news is amazing. EVERYTHING IS GREAT! Jack's scans are in and he continues to remain disease free! We are beside ourselves with gratitude at this good news.

Jack's hip tumor site is actually continuing to regenerate! We are told this does not happen very often with LCH. Often times when this bone is impacted by the LCH it does not fill in, meaning there is a hole left where the tumor has been. The "additional" good news about this regeneration is that it truly indicates no active disease in that location of Jack's body. The bone cannot regenerate where there is disease present.

For the first time his skull looked so normal it took our breath away. Each time something looks more normal we are shocked.

His blood levels are awesome. His ANC, which is his immune system/white blood count is still low but we are told it will go into the normal range within a year. No restrictions because of it other than having to take prophylactic antibiotics three days a week. Dr. Ruth and Nurse Beverly continue to watch Jack for anemia as his iron continues to be a steady low. But - it could be his normal so again they will just watch him.

Jack also gained weight for the first time in over a year and grew one entire inch in 90 days! Wahoo!

His urine is analyzed each visit to monitor for Diabetes Insipidus. This is a secondary disease caused by the LCH which you can read about here:

http://www.histio.org/site/c.kiKTL4PQLvF/b.1764047/k.C28D/Diabetes_Insipidus.htm

Jack's urine was just great and we hope it will continue that way. The DI presents itself within 4 years of the onset of LCH. We hope this does not happen to Jack.

So where are we on the journey? We are just about at the 6 month marker since Jack ended treatment. Each one of these 90 day appointments is critical. Dr. Ruth tells us we can breathe just a bit more at the 12 month marker, and even more at the 24 month point. But we are focused on each gift of 90 days free of chemo around here. We just opened that gift again after the final radiology reports came in late Monday night.

Thank you for thinking of us and any good thoughts or prayers you sent up for Jack. We are very grateful to you all.

Love -

Holiday Update -

OUR JACK MAN

Jack is trucking along. He is our amazing little man who keeps working hard to overcome the obstacles placed before him. And he does all of this - every single step of the way with a smile!

For example:

He is now an official graduate of speech therapy! Melissa and Jack worked so hard in this area of development and it paid off. They have been in speech therapy , sometimes 2 times a week, despite all the medical treatments Jack has had. Melissa has worked so hard to keep this going anyway we can. The boys and I were always told what to work on each week so essentially Jack was immersed in speech therapy with 4 "grown ups". Needless to say we are happy to see the normal speech annunciations present such as "fool" for "school" and be able to enjoy them instead of worry about them.

Jack will continue to participate in PT services due to the leg surgery caused by the first tumor and his hypotonia. He will also begin working with an OT professional in conjunction with his preschool. We will have homework assignments but he will also have the support and insight of his preschool teachers - which he adores!!

Winter is here and Mr. Port continues to be inside our little guy. Every fever is still an issue and involves a ride to University of Chicago for labs, testing and possible surgery to remove it . We look forward to the day it comes out but have to say that the longer it is in, the better. This is only due to the fact that if the port comes out and the LCH came back after that, Jack would have to have another surgery to place another Mr. Port. Pray Pray Pray to keep Mr. Port Placed!! Thank you.

FUNDRAISING AND AWARENESS

Please - at this time of year, many are offering and asking and begging for your support. All we ask is you consider what is right for your family when donating your time or talent. Keep in mind that the only fundraising done for histiocytosis is by committed families and organizations who understand how much we need a cure. The government does not provide any funding for research or treatment. Consider histiocytosis as one of your worthy causes this year:)

THREE MORE CHILDREN LOST THEIR FIGHT WITH HISTIOCYTOSIS THIS MONTH. Not a day or a night goes by that we do not think about what we can do to stop this rare illness. Remission does not mean this disease is gone - it just means that it is quiet for now. Families everywhere fighting this battle need all you can give - regardless of the stage of disease their child is in. They still need support, prayers, phone calls, fundraising help - any time or talent you can provide to help us end this disease.

Jump on the histio heroes train. As George Halas (COACH OF THE CHICAGO BEARS) said - " NO ONE WAS EVER UPSET THAT THEY GAVE THEIR BEST TO ANYTHING"

FUNDRAISING NEWS AND OPPORTUNITIES:

HISTIO MARATHON

Lauren, a survivor of LCH ran the Honolulu Marathon this weekend. We admire her strength and valor in completing this life challenge. Lauren carried a photo of Jack throughout the race. She gives us great hope that there will be a day when this is behind Jack and LCH is gone.

FIRST ANNUAL HISTIO HEROES 5K IN BATAVIA!!

Joe and Pam Kurtz from Chicago have partnered with us and another family for the first ever Histio Heroes 5k Run to be held on September 16th in Batavia, IL. Details to follow but we hope to see you all there. Every walker or runner can be a hero in this Histio Heroes race through fundraising for a cure. And, if you're a business, just let us know you are interested and we will gratefully accept any help you can provide to make this run a success. Stay tuned and be ready to run fans! We are counting on ALL of you to be out there running and fund raising! Our race will be called HISTIO HEROES - so stay tuned for more information. Think of joining a committee to share your time or your talent with us - PLEASE!!!

AWARENESS ITEMS

There are some items for sale that you can purchase to support the cause. They include:

www.histio.org

Click on Estore

The Big Fix Movie is available on DVD and the fans are cheering all over the world about this film! High School classes will study it in humanities! Don't be the last own wondering what it is - order yours today!

Magnetic awareness ribbons - again at the estore on www.histio.org

The Johnson Family put together lovely cards for the holidays which you can see and purchase on www.histio.org or www.nottheactor.com Logan and his family are the ambassadors and guides to many newly diagnosised families and our histio world would be lost without them.

One little girl lost her fight with pediatric cancer and she is still working to make a difference. You can support the Kylie Long Foundation through the purchase of the Sweet Pea Ornament. This ornament can help you honor the fighters in your life that have battled through chemo or just make you smile when you think of your own sweet pea:

http://www.kyliejanelong.org/kylieshomepage_files/Page697.htm

ONE PERSON CAN MAKE A DIFFERENCE......

If you go back and read this journal, you will see that one of the reasons we sought out another hospital and team for Jack's treatment was because Children's Memorial Hospital did not participate in the LCHIII protocal that allows for the accurate collection of data on treatment and results of treatment for children with all kinds of Histiocytosis but in particular LCH. We located a treatment center that would follow that protocol for Jack's treatment and found it at the University of Chicago. Word came to us last week that our because of our leaving, as well as another family's efforts, Children's Memorial Hospital will now work and report the results to the international research committee. Big Success here - one scared out of their minds set of parents can make a big system take notice, reflect, and change for the better.

TESTING

Jack's next test dates are on January 5. We ask that you please keep our sweet boy at the top of your prayer list, right up there with Grammy Pat our angel.

Merry Christmas everyone! We hope you all enjoy this holiday time with friends and family. Your prayers have helped us stay the course in 2006. We are hopeful and prayerful that that 2007 is a healthy one for everyone.

Love,

Twelve months ago this past Saturday we learned that our journey into the land of chemotherapy began. It seemed at that time that the disease took over our lives. It consumed everything. Whatever we did as individuals, as parents, as a married couple, everything passed through the prism of chemo.

We tried to live with the cliché that we were not going to give the histiocytosis the power to take over our life. We talked about the idea Jack was more than his disease and so was our family. Now that time has passed, we realize that for our family, and many others, that wasn't really true. We became the family with the child on chemo.

And everything really did change. We spent many a night after the children went to bed thinking about how this happened, and why we were letting histiocytosis take over such a large part of our life. We had to find a way to work around the chemo schedule, find a way to still be productive -- even on the worst days. Terms like "ANC," "Skeletal Survey" and "Port" were new additions to our vocabulary. Slowly we learned how to acclimate to this strange land.

Although it was our intention and hope to be bigger than the histiocytosis, for a long time that was not true. But now, we can actually say that it is more - well, routine. We do not mean to say that we are not frightened or that we do not lose sleep over the idea that IT could (shhh) come back.

But - the intensity of emotions and pain is behind us. Just like everything else we all have been through, we have become more accustomed to the terrain that we are were initiated into.

We really wondered how to celebrate this "no active disease status" that Jack is in. We do not wish to seem ungrateful for the best news ever, or that we are so numb from the experience that we are not sure what to do. So many of you have written to us or called with ideas on what to do to celebrate. From the simple - get a cake! to the elaborate - Take the kids to Disney! Take yourselves to Europe! we have enjoyed hearing how you would celebrate.

For us - we finally figured out how we celebrate. Just like at the beginning of the journey, we had to get re-acclimated to our old life. An old life that really wasn't the same as before but even better. An old life that was put on hold for a time. So - we celebrate by doing things that seem so ordinary to others.

We are the room parents for Jack's Halloween party.

We had photos taken of Jack where he looks like a healthy three year old and not a boy on chemo.

We picked apples, and pumpkins, and baked pies.

We attended college night to meet representatives from colleges that Ryan is looking at.

We sat and cheered Sam on as he tried out for the state honor band.

One of us had a "guys weekend" to celebrate the beginning of married life for Mr. and Mrs. Kittle.

You get the idea. The ordinary is so extraordinary.

Our latest visit to the University of Chicago comes with great news. Jack's check up went just wonderfully. Our news could not be better. The tests results show that Jack's skull has healed and the word "normal" was actually used to describe it which means the radiology team now sees no residual damage from the tumors. On top of this great news, we are told that there are actual signs of healing in Jack's pelvis! Both of these pieces of news are amazing. LCH can leave permanent damage from the tumors it produces and Jack's body is showing signs of healing. Awesome!

Jack's counts are still low in the white blood cell area but Dr. Ruth reminded us that it can take 6-12 months for Jack's immune system to settle back into normal after chemo. We also discussed the high reoccurrence rate of LCH within the first two years post-treatment and the possibilities of further complications of the disease years from now (delayed growth and diabetes insipidus are the main ones). The tests she has been doing to monitor Jack in these areas continue to show no impact at this time. We continue to pray for Jack's future healing.

While LCH will probably never be completely out of our lives, the increased time span between visits to Dr. Ruth give us more time in the Land of Normal.

Even more exciting news - for the first time in almost 2 years we will not have to see a doctor about Jack's LCH for 12 weeks! Dr. Ruth told us we could enjoy the holiday season so long as Jack remains symptom free. Our next appointment will be during the first week of January. WOW!! Each time we are away from these medical treatments, it feels like being on vacation somehow.

Jack is wonderful. He seems to have grown up so much these last few months. He is talking in complete sentences (sometimes paragraphs), no longer napping (we keep trying though), and enjoying preschool. He is getting along wonderfully with his classmates and has been asked to go to play dates with his new friends. His only struggle after making the transition to preschool is the germ exposure. Jack has had ongoing cold symptoms since about the second week of preschool. Dr. Ruth and our pediatrician are not worried and we are told just to monitor these symptoms.

We continue to wonder how and when to celebrate all this good news. We are of course cautious, as we are only 10 weeks post treatment. However, this weekend it finally came to us. The ordinary of life is what you miss while on chemo treatment. You feel like those ordinary things are put on hold. The ordinary becomes just extraordinary. And that is how we are celebrating right now. We are just thoroughly enjoying the ordinary.

We have made a big decision!

We have decided to send Jack to preschool.

We struggled with the decision but in the end the deciding factor was really we would regret not sending him if we kept him home because he is not around other children very much. Having older brothers Ryan and Sam's ages really is like Jack having 4 parents around.

We found a preschool that seems to just perfect for Jack. He would go on Tuesdays and Thursdays for 2.5 hours.

Right now they have no playground equipment at all and the building is one level. This eliminates the safety issue we have been concerned about. Jack's low tone muscle tone - called hypotonia - will get better with time and some PT. Jack may not be a track star but in all other areas it will not impact him. It just takes time and by kindergarten he will be caught up with his peers. He is developing like crazy and we would like to see if preschool keeps moving that forward!

Oh and his teacher is willing to use hand sanitizer on Jack's hands once an hour to help with germ control.

There is no clear answer - yes go or no don't - and that is why we struggled with choice. In the end, we decided it was time for Jack to try some things his peers are doing. If he catches everything, and we are getting that port accessed every week, then we will revisit this to see if it is still the right choice for us. We also thought that we are never sure when the LCH could come back. What if it is 6 months from now and treatment has to begin again? We would regret not grabbing this window of freedom.

Hello everyone -

Thanks for checking in on Jack today. Here is our latest update for you.

On July 26, Jack received his chemo treatment. We tried not to think of it as out of the ordinary, just another treatment in the process. His home health care nurse gave Jack his vinblatine through his port and we finished giving Jack his steroids over the next few days. This round of steroids really impacted Jack, making him very moody. We were quite happy to get through those days. And then, we went on with summer as usual. Being on maintenance therapy allowed us to enjoy summer and its routine without timing everything each week around chemo deliveries and treatments.

It seemed as if someone had taken the giant "P" for "Patient" label away from Jack and returned the "T" for Toddler. Or "B" for Boy. It is the little things that we missed, and the change from weekly treatment to every third week brought us more of the routine we all seemed to need. For an LCH family, it's a chance to take a breather and enjoy a little success with your crossed fingers and your hearts praying.

We tried not to think about the upcoming tests or that August 18 could be a milestone for Jack and our family. We had lots of wonderful opportunities to do this, as this was a busy summer here at Camp Thompson. At the end of July, we attended a family reunion for Jeff's side of the family. What a blessing it was to see everyone, many of whom have been praying for us for more than 18 months. We had a marvelous time, with Jack being the most social he has ever been. It felt wonderful to get away and enjoy this summer event.

Jack also celebrated the birth of his new cousin, Lily Grace. He tells everyone about his new cousin and that he is bigger than Lily Grace. She was born on the 10th of August. It was so sweet to see Jack visit her in the hospital. It was also important for Jack to be at the hospital for a joyous event, not a treatment. We feel very blessed to have a new and healthy family member!

It posed a challenge to avoid looking at August 18 as the "end of treatment" day. We fought hard to keep focused on living in the moment and not worrying quite as much about the future. Candidly, that seems to be one of the blessings of this journey. We just don't think about the future in the same way and it is freeing in a way we never expected. So, we were better able this time not to focus too much on this day. We both talked about how this was a journey that we were on, and that LCH is sneaky. It can do the most unexpected things. We had to be prepared for both scenarios - ending or continuing. We could see the letters clear and focused: F-I-N-I-S-H. We just needed to know if we could cross, or if we had more running to do.

THE TESTS AND THE NEWS

Jack was a trooper through the entire day, as he always is. It is amazing to see the joy in this boy despite all that he has had to go through. He loves to have breakfast in the cafeteria at U of C and he was pleasantly surprised to run into Dr. Ruth while we were eating breakfast! He entertained her with his happy dance. After breakfast we moved on to testing.

He had his films done first. Jack sailed through these, as they are old hat to him by now, but he always seems a bit frightened. We are so lucky that Jeff can be at all of these test and treatments as Jack really looks to him during these scary times. Thank goodness for his supportive employer!

Guided by the LCH III protocol, Jack was only imaged in the areas that the LCH has impacted in order to determine if there was active or inactive disease present. This includes his pelvis, head, and legs. While Jack is not on the protocol (he was not enrolled at the time he began treatment since his hospital did not participate) our treatment team follows it. Radiation comes with very real risk to children, and Dr. Ruth is very focused on this. Next was the blood work and the urine work. His white counts are low this time and Dr. Ruth and Nurse Beverly reminded us that this is to be expected.

We left the hospital with preliminary good news - that the team was still looking over the films but that things looked good. Later that evening, Dr. Ruth called us personally. Since it was a Friday, she had asked the radiology team to do what they could to complete their final report so that we could go into the weekend either starting the next phase of chemotherapy or remission.

"Jack has graduated on to the next phase - there are no signs of active disease. Congratulations!" Yes those good words were ours on Friday night. Our son has moved into remission. THANK YOU GOD!!!

WHAT IS NEXT?

You might all be thinking that we had a large celebration this past weekend given our good news. We did not. We all as a family just took the news in and have mulled it over. We are so grateful, feeling like a weight has been removed.

However, we are both realists. Dr. Ruth continued discussing the next steps for Jack with us after she delivered the good news. As we said before, LCH is sneaky. Dr. Ruth explained that the highest chance of reactivation is the first 12 months. After that, the risk is more likely moderate in the 12-24 month post treatment phase.

Jack will still have a compromised immune system for about one year. We have to be careful about chicken pox - if he gets it they will give him medicine to make it less severe. If he is exposed, there is a medicine they can give him to prevent it for a certain period of time.

Jack will stay on maintenance antibiotics for about 6 months to prevent a type of pneumonia that will be very very serious with a compromised immune system.

Jack will be monitored over this year to watch and see if the disease stays at bay. Our next visit is 8 weeks from now. After that, we think he will be seen every 10-12 weeks but the doctor will decide at each visit.

The news is good but now we have to wait and see if the disease is "down" or if it reactivates. Please let the LCH be down and gone for good.

Life is about phases and in this phase of our family life is a new beginning. It's all about getting started living with a child in remission, working through the fears that the disease will come back. Or - holding the secret internal celebration that this could be it - LCH could be gone for good. There's a whole new day ahead of us, where we sigh a big sigh of relief that we are where we are. Life is back, not on hold anymore. Maybe it presents more challenges, more triumphs, and even a few defeats, but more life. And isn't that all that we can ask?

A FINAL WORD FOR TODAY

We thank everyone who has helped us get to this point today. So many times, your emails, cards, phone calls, hugs and smiles got us through the day. Thank you for each one. Your prayers and kind words helped us all so much. We look forward to sharing this with Jack someday when he needs to be reminded of how much he is loved and cherished, how powerful prayer can be, and how one person can touch so many. Thank you for letting us share this with you. We know that we are not done with our LCH battle and that the next 12-24 months will be truly telling indicators about Jack's outcome. We think that maybe after the first year, we will be able to relax a little, and we hope to celebrate at that time. We hope you will continue to pray for Jack's health and full recovery.

One final point to share with you, that is best expressed by a former producer of the television show Nightline who is keeping his own blog about his battle with cancer:

"It happened to me again this past weekend. I was talking with a friend, and he was telling me about some of the problems he was facing right now. And almost immediately, he said he felt guilty about telling me about his problems. That his problems paled in comparison with mine. So I said what I always say. "That's wrong, your problems are real and are no less real because of my health." But of course, I can tell as soon as I say that that my words have had no effect.

So here's my plea to all of you out there who do not have cancer. Don't take that away from us. And by "that," I mean the opportunity for us to be your friends, to worry about you, to feel badly about your problems and to offer advice or consolation if needed. That's so important. Just because we have cancer, does not mean that we stop being your friends."

THE BIG MEETING

We returned home on Monday from THE BIG MEETING! This was a Histiocytosis conference in Cleveland where we were able to meet the leading medical and research experts in Histiocytosis. Imagine these experts willingly presenting in their area of expertise, having lunch, and then participating in break out groups where parents could ask any and every question of them and they would answer candidly! We eagerly awaited the conference and all that we could learn from these experts. And learn we did! Since Grandma and Grandpa Thompson came up and helped us with the boys, which was no small feat, we were able to take an entire weekend to focus on histiocytosis without any distractions.

We were prepared to learn as much as possible about the disease. We were prepared to experience a roller coaster of emotions about the future since we knew much of the information we would be gathering could be predictors of Jack's future. We really never discussed what it would be like to actually look into the eyes of another parent who has a child facing this disease. Some children's battle is easier, as their disease has remitted without chemotherapy, and other families are waiting to start the bone marrow transplant process. It was emotional to say the least, but so worthwhile. Never did we expect to feel what we did as we looked into the eyes of other parents who were sharing their child's story with LCH with us. Knowing they truly understand what you are experiencing is absolutely amazing. It was so therapeutic to meet over one hundred other Histio families. These families were from all over the globe including Canada, Vietnam, China and Argentina.

We learned so much from the experts that we feel we would bore you all to tears if we entered it here. Some highlights of our knowledge gained include:

* The similarities and differences between histiocytosis and cancer

Similarities: clonality, treat with chemo, can sometimes be fatal.

Differences: LCH is histiologically benign, LCH responds to immunomodulatory agents, LCH can resolve without treatment.

* LCH is a reactive process meaning the white blood cells in Jack's body are reacting to something. Reactive to what? Answer unknown.

* That treatment varies from hospital to hospital despite published treatment protocols.

* The rarity of this disease makes it very challenging to research as study populations are small, making it hard to draw extensive conclusions about the cause and the treatment of this disease.

As we said, we could go on and on with the "data" we learned with our minds.

Our hearts, well, they learned about heroes. These heroes include:

* Every child and family that has battled this disease

* The heroes in the medical community who are willing and able to educate parents at conferences like this and continue to research in search of a cure.

* Mike Golding, THE BIG MEETING organizer, who unselfishly took the time to put such a huge event together and subsequently has become a friend.

* Mojo Cosgrove for planning the BIG FIX whose fundraising efforts are about to close in on $300,000!

* THOSE GUYS ON BIKES - who we met in person and who have given months of time to fundraise, train and RIDE across our country - all for these little "histio heroes".

* OUR RIDER - Greg Ngo - who exchanged hugs and tears with us when we met him.

We are still processing all the information we received so if you have any questions you all can ask away!

JACK UPDATE

How the heck is that boy, you ask? Well, he is just hanging tough! Of course that is how our trooper has been during this entire journey. His last treatment was on the Fourth of July and he came through it with flying colors. He spent the day with Aunt Julie and Uncle Andy and his cousins who have moved back to IL. Jack cannot stop talking about them! Jack is just having a wonderful time discovering his three year old world this summer, which includes sprinklers and swimming pools, trips to the park, and even the first step on a sticker bush - ouch!! You would hardly know he was going through treatment - other than all the hand sanitizer he uses or the fact that he will not wear a tank top because "Mr. Port no like the sun!"

We parents are trying to live in the moment but know that we are getting closer to some very important dates. July 25 is the next treatment and it will be given at the University of Chicago with Dr. Ruth and Nurse Beverly. Jack really seems excited to see everyone when we go down there. After that is the BIG WAIT.

The BIG WAIT will take place from July 25 until August 18 when we are again at the University of Chicago with our treatment team. That day, after our scans, we will learn if we move to the survivorship team or if we "go back to start". Parameters for survivorship are no active disease. You can guess the parameters for going back to start.

We feel all your prayers giving us the strength we so need to make it through this incredible challenge in our lives. Thank you all so much!

A TRIP TO HOLLAND

We are often asked to describe the experience of raising a child with a serious illness. People want to understand, they want to be helpful. We were given this analogy from a good friend of our family's. It is by Emily Kinglsey.

It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, or filthy place. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. Sometimes it's slower-paced than Italy, less flashy than Italy, as you patiently wait for the chemotherapy to work and pray. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, go away... because the loss of that dream is a very significant loss.

Hi to everyone! Sorry for the delay in updating the site with the news of Jack's latest visit and test results. Without further delay......

TREATMENT MILESTONE

Another treatment and test milestone has come and gone. Most visits to the University of Chicago go without a hitch, however, this time Dr. Ruth was out sick and several other doctors were at a conference so the clinic was extremely busy. This made for a much longer day for us than we have experienced in the past. This also meant that when we left on Friday we had no news regarding Jack's tests. Usually Dr. Ruth and Nurse Beverly sit with us and give us a peek at the films, along with a preliminary report of what we see. Unfortunately, we had to wait through the weekend before we had any news.

On Monday morning, Dr. Ruth called to discuss Jack's tests. The news is good good good! There are no new tumors in his skull and in fact the two that were there are gone and the bones look to be healed! The pelvic tumor looks like it is healing a bit and the right leg repair from surgery continues to heal. Dr. Ruth told us that this is "very good news".

Her reason for telling us that is that many times when children with skull lesions go on this maintenance therapy - chemo every three weeks instead of every week - the skull tumors tend to pop up again. That did not happen in Jack's case! His body is still responding to the chemotherapy. This is very good news.

NEXT STEPS

We asked Dr. Ruth what the next steps are for Jack. We will continue treatment through the end of July. This means two more rounds of chemo. After that, we will have extensive testing on August 18 to determine if things are still progressing in a positive direction. If they are - we will stop chemo. If they are not - i.e.. some skull lesions reappear - we have to begin his treatment again with 6 intensive weeks of chemo and daily steroids (not a pleasant experience with a toddler). Still, finding good news in that, we would not have to go to the more "hard core" chemo if the tumors do reappear. Jack would be able to stay on the chemotherapy medication he is already on.

PRAYERS AND GOOD THOUGHTS STILL NEEDED

We are still praying hard to for the good news to keep coming. We so want the disease to be behind us! We ask all of you to keep those prayers and good thoughts going for Jack and our family. We are very hopeful that the end of August allows us to celebrate life after chemo. Dr. Ruth reminded us again that the news is "very good" but the battle with LCH is not over.

Jack is doing well in every other way. He is a happy little boy whose personality keeps blossoming every single day. His color is back and he looks very healthy again. In fact this week Melissa took his temperature a couple of times when his face was pink from running around playing. After a couple of normal readings on the thermometer, Melissa realized that she was just not used to the appearance of this healthy looking toddler. This experience has trained us to watch Jack very closely, and those habits will be hard to break.

BIG FIX AND THE BIG MEETING

The BIG FIX is underway and the riders are reporting a wonderful riding experience. This is Day Five. The Big Fix is a 28-day cross-country bicycle ride, using single-speed, fixed-gear bicycles from Davis, California to Boston, MA all to raise money for LCH. Make sure to view the blog for some great photos of the countryside. Yesterday the riders were in UT.

We leave for the BIG MEETING in Cleveland on July 7. Jeff's folks will be staying with the boys so we can go on this trip alone. We really want to be able to concentrate on all the presentations and gather as much information as we can on Jack's disease. We are looking forward to this trip and will update Jack's Place upon our return.

Hello Everyone -

Summer is officially here for our family. Ryan and Sam finished the school year late last week, so this week was the first week of our summer break and everyone here welcomed the reprieve from all of the work that school brings. It has been wonderful to focus on relaxing and enjoying the summer weather.

Summer also means that the BIG FIX cross country bike ride begins! This ride is to help "fix Histiocytosis" by raising funds to research the cause of Jack's disease. June 17 is the start date for the riders riding from California to Boston on fixed gear bikes who are committed to raising awareness and funds.

For those of you who would like to follow the ride and the riders, THE BIG FIX DAILY BLOG is up and running! Just click on the link below to follow Greg Ngo and all of the riders on their cross country journey beginning next Saturday:

Hello Everyone -

We apologize for the delay with our update, especially since Jack had his first treatment appointment at U of C on May 5. We intended on updating right away, but Grammy Pat lost her battle with colon cancer on that same day with Melissa, Melissa's sisters and Papa Frank with her. The past few weeks have presented lots of things to do as our family works towards a new normal, albeit with a hole in our hearts.

Jack's appointment at U of C has to have been the best we have ever had. Jack met a medical student that he adored and wore a stethoscope for most of the appointment. After checking Mommy and Daddy, he moved on to Nurse Beverly and Doctor Ruth. It is adorable to see him play doctor! It is just one of many signs we have of how comfortable he feels at this new clinic.

Jack's counts were amazing - 4265 was his ANC! Again this is the white blood cell count that helps him fight infection. Even prior to starting chemotherapy in November, his ANC was not that high. We believe that this is very close to the normal range. Needless to say, everyone on the team was very pleased. Dr. Ruth kept commenting on how well Jack looked, and we are learning that is really good news coming from your child's doctor.

Jack has been well, a three year old! We have been able to do some wonderful things with very little restrictions on his activities. We joined the Morton Arboretum which has an incredible children's garden and Jack loves it there. On our first visit he tripped and split his lip. While it was a bit scary, we were so happy to see how the blood started to clot. Sometimes chemotherapy lowers a child's platelets which are needed for the blood to clot effectively. You know you are the parent of a child on chemo when you celebrate the clotting instead of feeling sad about the injury!! Jack's big outing in a crowd will be to Sam's band concert this coming Monday night. He adores music and Sam's trumpet in particular so it will be exciting for Jack to hear Sam's whole band together.

Our next appointment is supposed to be on June 16. Dr. Ruth is not certain if she will take x-rays at this appointment or wait. This unknown unsettles us a bit as we like to know what is coming up. That said, it is nice not to be marking the weeks off the calendar until our next set of films are done.

Hello Everyone -

Jack is doing well. We are now considered on maintenance chemotherapy, which for Jack means chemotherapy every third week. We cannot believe what a difference this has made in Jack. We actually have more hair growing and Jack's eyebrows are coming back in. It has been amazing to live a life a bit outside of our house.

We have been able to go outside due to the lovely spring weather we have had. Every time we drive somewhere in the car, Jack tells us, "I no go home! I stay out!". His energy levels have risen through the roof. He even appears to be attempting to give up that afternoon nap, which many of his 3 year old peers have already done.

We are still pretty cautious about what we do since chicken pox and strep infections pose a real risk for him. Never did we imagine ourselves turning into such "germaphobes" but we have to keep Jack safe. His depressed immune system will be an issue for at least 6 months after the chemotherapy treatments stop.

Jack's compromised immune system is posing quite a challenge for us since at this time in our family a member is fighting through her final stage of colon cancer. We cannot take him to the hospital very often to see Grammy Pat, Melissa's stepmother, since there is a great risk of infection there. He went a few times last week. We have been told by Jack's treatment team that he cannot go this week since we are getting closer to his next treatment. This makes it hard to provide the support to our family in the manner we would like. Thank goodness other family members have more flexibility than we do. If you have prayers to spare, Grammy Pat sure could use them.

This Friday we are scheduled to go to our first official treatment appointment with Dr. Ruth and Nurse Beverly at the University of Chicago. We are not certain if any x-rays or scans have to be done at this appointment. We will be sure to post any news that we receive at this appointment. Keep praying for Jack's disease to stop progressing! We appreciate every prayer said for us.

Many have said they could not walk the path that our family is on. Yes you could. God provides us with daily grace to make it through the journey our family is on. We are blessed to have those graces.

Jack the Mixed Response Guy

After our last update in March we reported to all of you that we were told that Jack was a mixed response LCH patient. This meant that he had responded well to the chemotherapy treatment but during that treatment he had another tumor or lesion appear on his skull. With this news in our minds, we decided that we would like to know what the LCH expert had to say about Jack, his response to treatment, and his treatment protocol.

Dr. Kenneth McClain is this expert. He is both a medical expert and a research expert in LCH holding an MD and a PhD. We had been in touch with him via email since Jack was diagnosed. We continued to share Jack's progress with Dr. McClain via email ever since he started chemo.

We asked Dr. McClain if he would share his thoughts with us regarding Jack's treatment. Dr. McClain is a very busy doctor seeing more cases of LCH than any other doctor in our country. We were very grateful to know that he would share his professional thoughts with us regarding Jack's treatment plan. He stated he believed that Jack's current treatment - 52 weeks of the weekly protocol of vinblastine with the steroid bursts - was not the way he would go. Right now he would put Jack on matainence and see if he responds. Maintenance means that Jack would go from weekly chemo to chemo every third week for a period of time.

Dr. McClain encouraged us to consider obtaining another opinion in Chicago, and his suggestion was to contact the University of Chicago. We did so and after three weeks of coordination, we were able to meet with a highly recommended doctor named Dr. Ruth Rudinsky.

Our Visit to the University of Chicago

Dr. Ruth has about 20 years experience in the Hem/Onc department at U of C. We met with her on March 31st. She spent more than three hours with us during this consultation. We spent the first part of our meeting with her discussing histio, the patients she has seen, and the research she has read. She seems very knowledgeable regarding the disease. She seems clearly to understand the research considering links to autoimmune disease and genes.

She stated that she did not believe Jack's current treatment at Children's Memorial was inappropriate. However, she would treat Jack differently.

Given his presentation in x-ray images taken between 12 and 14 weeks after starting treatment, she would have moved to the maintenance therapy. Even though there was the appearance of an additional skull lesion, the fact that the first skull lesion shrunk 75% really bodes well for Jack in the future (something we actually heard from Dr. McClain).

She stated that her thoughts on the disease is not a cure - as that is not what we have available at this time. Rather, it is to focus on disease management until the disease burns out. The idea is to prevent as much damage as possible while balancing the risks and side effects of chemotherapy. Long term use of chemotherapy has risks for Jack as an adult including infertility and adult onset leukemia.

She stated that while the treatment Jack is currently on is not inappropriate, she would not keep Jack on this plan. She would move to maintenance for 3 months to see how he responds. (Remember maintenance is chemo given every three weeks instead of weekly). Her viewpoint was that more medicine does not mean a better long term outcome. She is not convinced that after 52 weekly treatments Jack's LCH would be more likely to stay inactive any more than it would if he goes on maintenance.

We think that was the new piece of information that we heard that we have to get our hands around - more medicine does not mean better outcome.

Decisions, Decisions - University of Chicago here we come!

We are ready to make this jump to this treatment team. Our only hesitancy is the feeling of safety the weekly chemo presents. Somehow we feel that more is better, and that more is likely to keep the disease away.

On the other hand, we have worked with Dr. McClain, and Dr. Ruth, read all the studies, and know that the three week matainence plan is probably right for us at this time. More does not mean better, does it? Hard to get our heads around, especially living in our Super Size Me society.

We are a bit nervous that we run the risk of under treating Jack, but on the other hand we are happy to have had the consultations with Dr. McClain and Dr. Ruth. It takes a lot of prayers and unwavering faith to take this leap. Please pray with us that all goes well and ultimately Jack receives the best of care. Of course we also want the disease to be gone!

We finished our last week of treatment at Children's Memorial Hospital last week. Jack completed 6 months of the weekly treatment plan and now moves on to the University of Chicago to be cared for by Dr. Ruth and Nurse Beverly. May 5 we go for our next chemotherapy treatment.

How is that sweet boy?

Jack is doing very well. He has been battling very low blood counts over the past month, making him tired and at high risk for infection. Hard to hear but remember that this is what chemotherapy is supposed to do. This past week was to be his last weekly treatment but his counts were too low. His counts have been low enough to be hospitalized several times over the past couple of months. That said, our strong boy did not have the fever criteria to be hospitalized - this boy is a fighter! Jack is really developing well given all he has gone through. He is so fun and had a blast hunting eggs and waiting for the Easter Bunny to come this weekend.

It is easy to sometimes question why this is happening to our child. Why must he endure this disease? What will his future be like? We once read that God's plan for us is like a piece of embroidery artwork. We only see the back side with all of the ugly knots, frayed strings, and twisted stitches that seem to make no sense. But, God sees the front side. The side that is perfectly planned and executed. The finished product, so beautiful and clear. We know God has a plan for Jack and our entire family. Although we do not see it now, it is surely going to be beautiful.

We ask you to keep praying for Jack and all children battling LCH. This year we know of 5 children who have lost their fight with this disease. Please pray for Dr. McClain and his noble efforts to better understand, treat, and CURE this disease.

Thank You, Thank you

Each time we update you, we have so many of you to thank. Thank you for the meals, the prayers, the cups of coffee. Thank you for the emails, the phone calls and the time you have spent with us to help us get through the darker days of the journey. Thank you for the care packages and the love and kindness you have encircled our family with. We are so humbled, and hope to "pay it forward" some day.

And a big THANK YOU to everyone who has helped us support Jack's rider who is a Histio Hero riding to help us find a cure for this disease. See our home page for more details on this ride across America to Fix Histio!

Jeff's Radio Tour

Hello Everyone -

Jack is doing very well. The last couple of weeks have been hectic, which has been a blessing since it kept our mind off of this week's tests.Here are the results of our visit today:

We visited CHM clinic today for treatment. Jack was in good spirits, smiling at everyone. We are continually amazed by his courage on this journey. After weigh-in, blood samples, and Jack's chemo treatment, we saw Dr. Weinstein who gave us the radiology report for Jack's scans from earlier in the week. Some of the highlights of these reports include:

The top skull lesion, which sent Jack into chemotherapy, was about the size of a quarter when he started treatment on 11/2. Last scan series showed an improvement of 75%; this time we only see a tiny spec on the x-rays which means the disease is almost completely resolved in this area of the skull.

The side skull lesion, which was discovered in January during our last series of x-rays, appears just a bit smaller. It is hard to say that or if the angle of the x-ray makes it look this way. The report stated that it was stable with some improvement visible.

The lesion in the pelvis, which is the most challenging to see in the x-rays, is being referred to as "grossly stable" which means that it appears to be healing some but has not changed in size much. This is a very, very hard area to see on the x-rays due to the intestines and their content sitting right over the pelvis. It is not bigger than what was seen in January, which is the most important thing to be able to see.

We were able to see all of the x-rays this time and have to tell you it took our breath away to see this large hole of a lesion morph into a spec at the top of Jack's head. This is good news. It is hard to see the other tumors but again they are not getting bigger and may even be improving. The new tumors may not have responded in the dramatic way that the top skull lesion did, but they are stable which is a move in a positive direction. Prayers are answered - maybe not as quickly as us humans would like, but still, we are making progress.

He is considered to be "healing" and "stable".

Jack is still categorized as a "mixed response" patient.

We asked many questions of our doctor today to gain an understanding of where we go from here. These included:

What do the results of the x-rays mean?

It means that we have good news. There is no new lesions present and the lesions that Jack does have appear to be healing or stable. Six weeks is a very short period of time in which to expect dramatic results.

Is the chemotherapy working?

Yes. It appears to be keeping the LCH from spreading any further.

Will the damage done to Jack's bones ever fully heal?

Maybe. Maybe not. He appears to be healing very well in some areas. Sometimes LCH does damage the bone, leaving a hole in its wake?

What are the next steps?

We will discuss our next series of tests after Jack's appointment at the end of this month.

How long will the treatment be?

One year minimum - if the disease appears to be stable during treatment. At the one year marker, Jack will have more extensive testing (read: CT, PET or Bone Scans that require sedation) so that the team can determine the extent of the healing, especially in the pelvis. November of this year is the one year marker. LCH is a very sneaky disease and has a recurrence rate of 50% so we want to do all we can to keep it from coming back.

Will we be adding or changing chemotherapy agents?

No, not at this time. Jack has had some good response to the chemotherapy agents currently being used in his treatment plan. Changing treatment agents is very hard on a child and will only be considered if it appears that the LCH is clearly not responding to the treatment. Multiple lesions appearing from one series of tests to the next would indicate that changing agents is something to be considered, but would not be definitely done.

Will you ever get a website up for Jack so we can read the updates and see his cute face?

Yes. Jeff is working on that right now. Our biggest concern is that people will forget to read it and forget to pray for Jack.

How are you all doing?

We are doing fine - we are exhausted today from our hospital visit. Each day and week comes with new hopes and challenges but we here at Camp Thompson Grant are 5 hard working, praying, fighters who want LCH out of our lives. We are working together to take care of each other.

Please remember that this disease is affecting our whole family and keep Ryan and Sam in your prayers. Sam had a very hard week this week. One day he walked in the door, dropped to the floor in our mud room sobbing uncontrollably. His whole body was shaking. When we asked him what was wrong, he couldn't even form words he was so upset. Finally he just blurted out, " I hate histiocytosis, I hate that Jack has it and I think everyone but me thinks he is going to die! I just want my little brother healed."

This disease affects the whole family, and it sometimes it impacts really stink.

To those of you who have let us know you, your friends, or your families are praying for us - WE COULD NOT MAKE IT THIS FAR WITHOUT YOU.

Hello everyone -

We hope you all are well. We were very grateful for all of the celebratory emails and phone calls we received over this past weekend. We appreciate the support you continue to give while Jack is fighting LCH.

We do have some additional news to pass on to you.

We received a phone call Monday from Jack's doctor. We were told that they may be mistaken regarding the results they provided to us Friday about Jack's treatment progress. Melissa had to take Jack back to Children's Monday for more x-rays. We received a phone call Tuesday evening from Jack's doctor.

Here is what we were told after the additional tests on Monday:

- Yes, the tumor in the skull that everyone has been watching did shrink by 75 %

but

- They see another tumor in his pelvis. Because of its location - pelvis - we are told it was there in the past and dismissed as gas or bowel. It is a very hard area to see in an x-ray. After review of his films from October it does appear that it was present before we began chemotherapy treatment in November. This is seen as "positive" news because although it is another tumor it was present before treatment and did not spread during treatment. However, because of its location it is challenging to see how much it has been impacted by the chemotherapy.

- There is an additional little tumor in the front of Jack's head. It appears to be the size of a tiny button. The doctor cannot tell us if it was present in October before he started treatment or not because of its location. It is right where the front forehead bone meets the top of the skull and in little ones their skull bones have to fuse. Due to the way a toddler's forehead bones grow together it just may not have show up on the x-ray.

We are now told that the results of this phase of treatment was "mixed" and the likelihood of Jack experiencing more bone tumors during his childhood is "stronger" than if he had had the excellent response we were told he had had on Friday.

So now what?

At this point the treatment strategy is to stay with his current chemotherapy for another 6 weeks since. Jack did have a good response to the treatment in one of the tumors - 75% change is very positive. After the next 6 weeks of treatment, the x-rays of the skull and pelvis will be redone. If there is good response, we will continue on this treatment protocol for another 6 weeks after that. Good response is defined as no new lesions. Of course those of us praying are hoping for more progress and that could happen. Look at the response the first tumor had to the treatment!

If the response to treatment is not positive over the next 6 weeks (more or larger tumors) Jack will have to go through additional chemotherapy with risks and long term impacts that are more dangerous to him.

While we are saddened by this news, we are grateful for the ambiguity because this may mean that Jack is still responding to treatment in these additional tumors that we did not see when we started his chemotherapy.

Many of you have asked us how to help us. Keep praying is our first response! Next, we are still trying to digest this news of this week around here so we ask that you understand that. Finally, we know that since this is going to be a longer course than we thought when we started we are going to have to accept your gracious offers of help. We promise to work on accepting help.

Hello everyone -

As we stated in our last email, it is a new year and around here we are hoping for a healthier and less stressful 2006. That means that their are some more medical milestones to hit regarding Jack's treatments. One step at a time is our motto here.

Today's step was completing Jack's skeletal survey x-rays. We are so proud of Jack. He sat still for every one of 25 x-rays that had to be taken. As we mentioned, this test will tell us if his body is responding to the treatment. We were told that the long term prognosis is good if a child responds to treatment during the first twelve weeks with the "first line" chemotherapy drugs.

The results are in - and Jack's tumor has shrunk by about 75%!!!!!!!!!! 75%!!!! We cannot believe this! Even his doctor told us this news was very, very good and much better than she expected. Our guy is responding wonderfully to this treatment and the tumor is going away!! The chemo is doing what it needs to do and Jack's long term prognosis is good.

This brief update also includes in it much gratitude to all of you for the prayers and support during this time. While we know that we still could have several months of treatment still before us, this news makes us believe we can make it through. We truly feel like today we have been on the receiving end of a miracle that came from your prayers.

Hi everyone -

Happy New Year! It is a new year and around here we are hoping for a healthier and less stressful 2006. That means that their are some more medical milestones to hit regarding Jack's treatments. One step at a time is our motto here.

The boys (and the rest of us) had a great holiday season. Too many presents! On the health front, Jack battled fevers for about 10 days leading up to Christmas. The Saturday evening prior to Christmas we made our first pilgrimage to the ER at Children's Memorial Hospital. Jack's white blood cell count had been low and his fever went to 101.8 so off we went. Other than the long commute down there on a Saturday night, it was a positive experience. The medical team moved quickly to keep him isolated and as soon as they took blood for testing Jack was able to receive Tylenol which helped him feel much better. Family movie night essentially moved to this lovely ER room where Jeff and I watched "Finding Nemo" with Jack while he was given an IV antibiotic.

During the week we seemed to have kept the fever at bay with only a slight elevation a few times during the week. Thursday came and Jack received his home chemotherapy treatment. Later that evening, Jack's nurse at Children's called to tell us that his counts were the lowest they had been to date at 450. This meant that we were to take Jack's temperature frequently throughout the next few days and that if the fever came back he most likely would be admitted to the hospital.

Now, please know that we logically have been prepared for the fact that something could happen to Jack during these treatments that would interrupt the normal ebb and flow of our life. We had discussed this frequently and promised ourselves that we would keep in mind that this treatment was not going to be forever and that missing one important event (or two or three...) would be worth it if the disease went away. But hearing that there was a chance we could be in the hospital for Christmas caused us deep sadness.

We realized that we have been set adrift on the sea in the Tropic of Childhood Illness. It's not just your child on the boat but it is everyone in your life. Everyone becomes involved and you suddenly realize how much you need other people and their support yet you seem unable to tell others this. This sea your boat is riding through has ripples which spread far and wide. Friends, family, neighbors, the school, the workplace, all are suddenly brought into very close contact with your life whether you want this or not. They cross into a private world that you are forced to share, exposing a vulnerability that you did not want to the world to be aware of. These low counts and the realization that the holidays could be spent in the hospital brought waves for us on the boat and it forced us to acknowledge that we are not sure of the direction this boat is taking us that the acceptance of the unexpected has to become our mode of operation.

This became our mantra during the holidays. Let's just accept that this is a journey we cannot control and that the unexpected could happen. It seemed a bit freeing to think this way, like we did not give more power to the disease than we had to. We took his temperature as instructed. While we watched the thermometer tick away Jack's elevated temperature each time we took it on Friday, we realized that we would need a back up plan for Ryan and Sam if we ended up in the hospital. We spoke to our neighbors who would be willing to take Sam and Ryan if the need arose. We moved all of the Christmas presents to one location so that our friends would be able to put the gifts under our tree if we needed them to. And we kept taking that temperature. It taunted us the most on Christmas Eve when it actually rose to 100.2 (100.4 was the number that sent us to the hospital) prior to nap time.

Ryan, Sam and Melissa went to Christmas Mass while Jeff put Jack down for a nap. We were all certain that we would be off to Children's after the service was over. After all, everyone with children knows that fevers rise at night. We prayed like crazy at church and spent time thinking of all that we were grateful for. The service was wonderful and joyous. Arriving home we were greeted by a fever free toddler who told us that he wanted Play Dough from Santa. It was just glorious.

As of tomorrow, Jack will complete his 10th week of chemotherapy. For the most part he has been handling things very well. His hair is beginning to thin and for us this is a wake up call that the disease we cannot see is really present. However, we are trying to embrace this stage of the journey as a sign that the chemotherapy is doing the job it is supposed to do. He seems to intuitively know when it is home treatment day and announces that "Nurse Maryann come today but no bad cream!" Jack does not like the numbing cream we put on his port prior to the needle being inserted, hence his "bad cream". Overall, however, he is a growing toddler with lots of toddler interests. Right now it is fish and Nemo!

Our next medical milestone is a week from Friday - January 20th - where we will hold Jack tight as he goes through his next skeletal survey x-rays. This day will tell us if his body is responding to the treatment. Of course as each day ticks by we are getting more anxious. We ask you all to continue to keep Jack in your thoughts and prayers especially on this day. If the chemo is doing what it needs to do, Jack's long term prognosis is much better.