Our Buddy Alex

Alex had his first chemo treatment on the afternoon of September 15, 2005 at Minneapolis Children's Hospital. When we arrived a nurse placed a
numbing cream over Alex's port. The cream numbs the area in about one hour. Alex then played in the waiting room with every toy that they have to
offer him. He loves to sit in and ride around in the toy police car. When they called us all back to the room, Alex drove down the hallway in his police
car. For the first time, Alex walked up on the scale to be weighed and measured. This is a big deal because he usually screams and cries yelling
"mommy" while he is being weighed and measured. Next we went into the room and met with our doctor and the nurse that is assigned to us. They
went over details of the treatment. We signed our consent to be a part of the LCH study for Alex's treatment. As we signed the paperwork, Alex
played with a Nemo book and danced with his upper body as the music from the book played. He made every one in the room smile.

When the treatment began the nurse first took samples of Alex's blood from his port. He sat in his daddy's lap and watched with a few cries and
whimpers. By the time the nurse began to insert the chemo into his port, he had calmed down and even helped push in some of the medication (see
our pictures). We then talked to the doctor and nurse for a bit longer. We got our questions answered, received additional information, scheduled his
next visit, and received the additional medications that Alex will begin today.

Alex had his second treatment September 22, 2005. He did a good job handling all of the stuff going on around him. He still loves to go to the
doctor. He claps when we pull into the parking ramp. He loves the elevators and screams each time he gets in and out of them. He actually made a
woman jump when the elevator doors opened and he screamed. When we got to the clinic, up on the fourth floor, and he was called back by the
nurse he stepped right up on the scale to be weighed. Then he backed up to the wall to be measured. The hardest thing for Alex to deal with is the
blood pressure cuff. He does not like to see it, touch it, and he especially hates to have it on him. The other hard part for Alex is taking his shirt off,
he has become very sensitive to removing his clothes. During this visit Alex helped the nurse again by pushing the drugs into his port. He makes the
cutest face while pushing on the syringe. There is a picture in the Our Pictures section. His blood counts are still normal, but this was expected
since we are only on the second treatment. Sundays seem to be his down days. He is more tired and weary on this day. It seems to carry over into
his Monday at daycare also. Alex developed a mouth sore this week. It makes it harder for Alex to eat and drink, but he still manages. He has been
a real trooper so far and we hope that he continues on this same path.

Alex had his third treatment today. Grandma Mary came to Children's Hospital to see Alex and the process that Alex goes through at each
appointment. Alex was a show off this time. He still had a hard time with the blood pressure cuff, but he made it through. Alex's nurse, Rachelle,
was there to meet Grandma as well as Alex's doctor, Dr. Richards. Alex loves to flirt with Rachelle. His eyes follow her all over the clinic. Rachelle is
in the pictures of Alex getting his chemo. On this visit Alex got to put his blood samples in the "big tube" and push the buttons to send it off to the
lab. He was very excited to be able to help Rachelle. It is amazing at how fast the results get back to the clinic from the lab! Alex again helped insert
the chemo into his port. This time he did it while eating his "fishes". Daddy had to keep them close by at all times. He eats all of the time now, from
the moment he wakes up until just before bed. Alex developed another mouth sore this week. They seem to show up on the Saturday after his
treatment. He cries when he starts to eat or drink anything, but after the initial pain he seems to be OK to eat and drink. Last week the sores were
gone by Tuesday. This week we will watch it and see what happens. He also seems to be getting a cold. His nose is a little runny and he seems a
little more sluggish, otherwise he is in great spirits. He loves to wrestle and hit people right now. Those steroids are doing wonders for him! Alex is
now on prednisone, miralax, bactrim, and zantac. He gets most of the medications everyday in multiple doses and one of the medications two days
a week in big doses. He has been taking the medications with very few complaints. We are blessed at how well he has taken every step of this
process. His happy smile and impressive personality have helped us deal with this more than he may ever know. God bless little children!

Alex was not himself on the day of his fourth treatment. He was more hesitant to go into the room, though he did much better while getting his
blood pressure checked. The lab was slower today so we had to entertain Buddy more than usual in between the blood draw and the chemo. The
Prednisone makes his emotions go up and down and all around. One minute he is happy coloring with markers and the next second he is crying
and wants to be held and the next minute he is trying to hit everyone. We deal with it day by day.

Today Alex discovered the fish tank in the waiting room. He also played with the Pac-Man game they have for two to play. After his blood draw he
helped Rachelle send his blood to the lab in the magical tube. I put a picture of how happy he was to see it get sent off like a rocket. His blood
counts are still looking good. Today was also the day for his flu shot. It seemed to catch him completely off guard. Nothing else they do to him at
the clinic hurts him like that shot hurt. Hopefully he won't remember it when we go back to the clinic this next week. The weight that Alex has
been putting on each week has finally started to show in his face and belly. He has put on five pounds in his four weeks of treatment. That is a lot
of weight for someone his size. His clothes selection is getting smaller as he grows out of one item at a time. He is no longer able to climb up on
Emily's big bed, as his new tummy gets in his way. He also seems to struggle a bit more when he is bending over or trying to get up from the
ground. We also began to notice hair loss at the beginning of this week. His shirt was covered in his hair on Monday night. Right now it seems to
be thinning out. We can really notice it when he is out in the wind or in the bathtub.

Today we went to the Peterson Produce Pumpkin Patch, located just outside of Delano. We were invited with all the other families being treated
at our clinic. It was a lot of fun for Alex and Emily. They had a very nice lunch, games for the kids to play, and a hay ride. Emily and Alex loved
petting the friendly horse and they were able to feed it an apple. Everyone there was so nice and welcoming. I have to admit that it felt weird to
be there today. I still have a sense that none of this has really happened and that we do not belong with the other families and at the same time
they are no different than we are. It is hard to explain.

We are coming up on Alex's fifth treatment. I cannot believe there have been so many completed already. After his fifth week of treatment, we
will begin to taper off the Prednisone. On the sixth week after chemo he will undergo tests to see if the treatment has helped his body get rid of
the lesions. If the tests are good, he will need to finish out his six month treatment going once every three weeks. He would then take the
Prednisone each week following the treatment. If the tests are not good he will continue to go in weekly for the chemo. I am not sure at this
time exactly what test they will perform. I believe it will either be a bone scan or an MRI.

Week five is complete. It seems like the last two treatments have been harder on Alex. They have not necessarily been harder on his body, just
harder on his willingness to proceed. He does not want to go back to the room anymore and he cries when it is time to remove his coat and pull
up his shirt. It is a good thing that he cannot feel physical pain through all of this. He does still smile while he is there and he still loves to play
with all of the toys. This visit he drove "his" police car back to the room. Then he drove the car out of the room to the magical tube to send his
blood samples off and then he drove back to the room again. He makes everyone in the clinic and hospital smile as they walk by him. He will
often say "Hi" to people as they pass. I think his red hair really gets him noticed. For the second week in a row a nurse in the cafeteria talked
and played with Alex. She remembered him from the week before the moment he walked in the room. He gained a little more weight this week.
His little cheeks and belly are so round now. More of his hair is coming out. He has little bald areas all over his head. At the same time, if his
hair is combed forward I do not think it is that noticeable to other people. If you mention anything about hair in front of Alex he will start to pull out
his hair. I guess he really is a little boy because he thinks it is pretty funny to pull his hair out. Since this is week five, we have begun to taper
his Prednisone. He will be weaned off over the next two weeks. Alex will have his deciding tests completed on October 28th, one week after his
sixth treatment. They have scheduled a complete set of head to toe x-rays, a CT scan and a bone scan. These are the tests that will determine
our next step in his treatment. It will be a very long day for Alex, as he will have to undergo two of the tests before being put under for the CT
scan. We are anxious and nervous to have these tests completed and the results dictated. We are praying for the best and are hopeful that it will
be great news! Thanks again for everyone's prayers and positive thoughts!

Alex had two visitors come to his treatment today. His aunt Theresa and his sister Emily came to see the process that he goes through each
week. Emily loved playing with the toys in the waiting room and she was amazed at the large fish tank. Theresa made Alex's day by getting
him a small school bus toy at the hospital gift shop. He has been playing with it all night. Alex had a hard time again at this treatment. It
seems to be getting tougher at each appointment for him. I think he has decided that this is not fun anymore. He still loves Rachelle though.
He is a trooper for her. She has a way with him! Even though he cries and struggles, Rachelle can always get a "push" face and a smile out of
Alex at some point during the treatment. Alex's blood counts were low today, in fact they were the lowest that he has had, but they were still
able to give him chemotherapy. Hopefully his sixth treatment was the last weekly treatment he will have to receive. We will now wait for the
test results after next Friday. We should have the results by the end of that day. We are very hopeful that all the tests will come back with
good results. He does not limp all of the time anymore and he no longer complains about riding in his car seat. We hope that these are signs
that the first six weeks of chemotherapy (and everyone's prayers) have helped his body heal. Tom and I are off to Chicago tomorrow for a
regional LCH meeting. It is a patient and family meeting for LCH. We hope that we will be able to find out even more about LCH. We will also
be able to meet other families that are in our situation and two specialists. I am sure that we will be able to take something of value away from
this meeting.

The big day. Alex had his x-rays, CT scan and bone scan today. He was so cute in his little blue robe and he took every opportunity to talk to
people and make them smile. His personality is finally coming back to him. He took his last dose of prednisone (for now) today. As we tapered
him off the drug you could see how much his personality changed again. He no longer hits or is as aggressive as he once was. He does not
eat from morning until night. In fact, for a couple days he barely ate anything, but it is getting better. He is all smiles and I mean all smiles. He
stops to interact with people where ever we go. His red hair and large cheeks really help him get the attention. It is fun to watch him interact
with other people. I am not sure what people think when they notice that he is missing most of the hair on the top of his head. It is like he is a
little old man losing his hair. He still has the majority of his hair around the back of his head. I want to tell everyone what he has so they do not
wonder, but I know that is not realistic. Alex's x-rays did not go as well as planned. He did not like being held in any one position and we took
just as many x-rays as the day this all began. We all made it through it even though he lost part of his voice and was very tired after we were
done with the x-rays. Then Alex and I wandered the halls of the hospital waiting for the next nurse to see him. He again attracted the attention
of everyone from doctors, maintenance, and other patients in the halls. He is just so happy right now. Next we went in to have his port
accessed, so he did not need an IV today! Hooray! They accessed his port and then another nurse came in to administer the bone scan
injection, which is radioactive. He survived this part with little complaint. Next we went to another station for his pre-op check. Again all of the
nurses came in to play with him. A couple of them remembered him from seven weeks ago when he had his MRI. After a lot of waiting, we were
able to take Alex back to the CT scan room. Tom held Alex while he was being put under. It happens so fast. Every time I think I am prepared
to see it, but I do not think I ever really will be. We stayed while they placed Alex on the table and hooked him up to everything (see picture).
Then we waited. They allowed us to come back in, after they moved him to receive the bone scan, to see him (see picture). Then we waited.
Finally we got to see him in recovery and we spent a lot of time waiting for him to wake up and then to drink some juice before we were able to
go home.

We did not receive any news from the procedures before we left the hospital. We got a call around 6:30 PM that night. We were told good
news, but not everything we wanted to hear at that moment. His lesions have gotten smaller and there are no new lesions! We are very happy
that everything seems to be working as planned. They, however, are not able to tell at this time if the lesions are small enough to go to the
every three weeks treatment plan. Alex's doctor needs to do some research this week and check with the study protocol, that we are a part of,
to see what his next step will be. We are hoping that Alex will not have to go back to the weekly treatment regiment, but we will continue on
that path if it is what is best for Alex. All of us want to make sure that we get rid of all the LCH. We will wait to hear back from Alex's doctor
this week to see what we will do next. For now we are happy to have a small break from most of the drugs, at least the prednisone and chemo,
and it is great to know that we have been on the right path thus far. Thanks again for everyone's support and prayers!

Our trip to Chicago was very informative. It helped us out in a number of ways. The greatest gift was meeting other parents that have been
through the same thing that we have been through. It is amazing how similar all of our stories were from the beginning, even though each
child has LCH in different locations. We all had a chance to stand up and tell our story for everyone to hear. I tried to be the one to tell our
story, but I broke down and Tom had to get up to finish it. We also had the opportunity to meet Dr. McClain. This doctor is wonderful. He
knows so much information on LCH. We learned so much from listening to him. He has been involved in many studies and has spoken with
doctors from all around the country on LCH. He had information from studies that are not even in print yet. We also learned so much from his
presentation (click here to view the presentation). There was a question and answer session, in which all of us were able to ask Dr. McClain
any questions about our child or LCH. This session lasted for a long time and again we learned so much from the doctor and the other
families. The statistics alone have helped us to get a hold of what every part of Alex's story means or may mean. For a disease with so little
information in print, this weekend meant a lot to us. I think we were also in a place in Alex's treatment that we could take a moment and
listen to take in all of this information.

Alex will need to continue his treatment on a weekly basis for the next six weeks. We received the call from his clinic yesterday. We are
happy that the lesions are getting smaller, but they are not small enough for Alex to go to the maintenance stage of treatment (every three
weeks). We do not look forward to giving Alex the prednisone again. He just returned back to his normal self and has been so happy this last
week. It is hard to think that we have to do the same thing to him all over again, after we just finished up with the first six weeks. The doctors
said they are not surprised that this is the path of treatment we need to take, due to the size of Alex's lesions when we began treatment. The
doctors did say that his lesions were much larger than normal when the LCH was diagnosed. We are still thankful that the combination of
chemo (Vinblastine) and prednisone seem to be working correctly. We will start his treatments again tomorrow, as they did not want to wait
any longer to begin again. He will continue on chemo and prednisone until the week before Christmas, unfortunately that means he will still be
on prednisone at Christmas. We are not sure what will happen after these six weeks is up. The doctor will inform of us of what to expect at
Alex's appointment tomorrow. We should be able to view his full scans, x-rays and all test results tomorrow at his doctor appointment. Alex
will most likely continue to lose all of his beautiful red hair (I cannot bring myself to cut the remaining hair off) and gain more weight. The good
thing is that it does not seem to bother him at all. We will take this one day at a time again.

Here we go again! Alex had his seventh treatment today, the first of his current six weekly treatments. He did a good job at this treatment.
As with the last few treatments, he struggles when we pull up his shirt to put the needle in. He has not been sleeping through the night since
he started back on the Prednisone; maybe we were lucky over the first six weeks of treatments. He is still very happy and he has not started
to get aggressive yet. He is taking a higher dose of Prednisone this time around since he now weighs more than when we started treatment.
He still takes his medication with no trouble. I put a picture of Alex with Dr. Richards in our photos. He is so good with Alex and he makes
Tom and I feel good about everything that we are doing to Alex when we talk to him. Rachelle was not available today to give Alex his
treatment, but she did come out to play with him for awhile. We learned that Alex's lesions are still large. I thought that they would have been
at least 50% less, but they are not. It is still good to know that the treatment is working.

Treatment number eight went great! I could not help the rhyme. It was a good treatment. Alex put on two pounds over the last week! He is
now at 40 pounds! Rachelle was there to be with Alex today. Alex handled this treatment better than any treatment we have had so far. He
helped Rachelle push in the chemo. He helped send his blood off to the lab. He did not cry, complain or struggle as much as he has been
over the last number of weeks. Overall it was a good clinic visit. His blood counts are still looking good. The Prednisone does seem to be
setting in this week. He wants to eat chicken nuggets for breakfast, lunch, snack and dinner (and in between all of them). We have
become creative at distracting his attention to get him to eat other foods, like the banana in the picture - I could not resist that picture! We
are hanging in there and hope the rest of the visits go just as well! Alex is sleeping better at night now, which helps us out a lot!

Alex's last weekly treatment will be on his 2nd birthday, December 8th! I had miscalculated the dates earlier. He will have his next set of
scans around December 14-16. Then he should be going to treatments every 3 weeks, with one week of Prednisone to follow each
treatment through March.

Alex had another good treatment today. His treatment went well even though Rachelle was not there to give him the treatment. He does
seem to be getting use to the treatments, since we have had a couple of good times now. His treatment will be on Wednesday next week,
since they will be closed on Thanksgiving. He is allowed to move his treatments by twenty-four hours at a time, if needed. He has lost
much more of his hair. It cannot be "combed over" anymore. It is hard (for me at least) when people stare at him. I know they are probably
just wondering what he has, but it is still hard to see it all around you. Alex likes to wear his hat most places we go. You can see at his
clinic visit today that he did not take it off for the entire visit. I had Alex's website added to the histio.org site as a link this week. I hope
that my site will put me in contact with other families and possibly help someone else who is just learning about LCH and its treatment. I
know that I learned a lot of day-to-day information off of another family's personal web page.

Alex had his treatment on Wednesday this week, as the clinic is closed on Thanksgiving. It was also Tom's birthday today! We had his
treatment at 9AM and then we took the kids to the Mall of America to see our favorite Santa. It was really cute. Alex and Emily both went up
to Santa and talked with him. They both sat for a cute picture and then when Santa asked Alex for a hug good-bye Alex gave him a kiss
instead. The picture of them is in the picture section. Alex had a good treatment today again. Rachelle was there for Alex, which I think
always makes it better. He did a great job again. It is getting a little harder for them to the needle into his port. All of the extra weight that Alex
has put on tends to get in the way of locating the port. Only two more weekly treatments (hopefully). His scans are being scheduled for
December 16. We are not looking forward to another long day at the hospital, but we are hoping for more good news. We took the last step in
Alex's hair loss today. We decided to shave the rest of his remaining hair off, which was only left around the crown of his head. Tom and I did
the procedure in the bathroom while Alex watched closely in the mirror. He did not seem to mind at all. We figured it is better to let it all grow
back in at once. It should start to grow back within two to three weeks after his last weekly treatment. The every-three-week treatments
should not give him as much hair loss as the weekly. We hope everyone has a very Happy Thanksgiving!

Alex had his eleventh treatment today. This treatment went as well as the last couple treatments. He is still eating and asking for chicken for
all meals and snacks. He does fit in apples, yogurt and crackers in his daily diet. He put on two more pounds over the last week, so he is now
43 pounds. It is hard to believe that he has gained 12 pounds in about 10 weeks. Even though 12 pounds may not sound like a lot, it is the
equivalent of about 40 - 50 pounds in an adult. The doctor called Alex the poster child for Prednisone today. They all are so nice to Alex at the
clinic, no wonder he loves to go each visit. We are looking forward to our last weekly treatment next week, on Alex's second birthday. We
started to taper his Prednisone today. After his two week taper, he should start to lose the weight he has put on. It will take two to three
months for the majority of the weight loss to occur. He has a hard time getting around and overall he just looks uncomfortable with all his
excess weight. All of the kids at daycare loved Alex's new haircut. I was told that each one of them had to touch Alex's head to feel the
baldness. Alex loved going to daycare to show all of them. We are glad that he has been such a good sport through all of this; it has really
helped us to deal with it. Not to say that we have not had our hard times, but we think it is important to remain positive and focus on what
really matters.

It is Alex's 2nd birthday today and his twelfth treatment. Emily came with to the doctor today. Alex had a great treatment and played very
nice with Emily. He still gained another pound, so he is now 44 pounds. He is still tapering off of Prednisone. He will take his last dose for
now on December 14th. His blood counts are still doing well; they have remained low but consistent. Both Alex and Emily got to pick a toy
out to bring home for Alex's birthday. Overall it was a very nice visit. His scans are planned for December 16th. He will start with his pre-op at
his clinic in the hospital. After that he will have X-rays, the bone scan injection, the CT scan and then the bone scan. His last procedure is at
2:30. We should hopefully be home by 7PM. Again we hope and pray for good results and no new lesions. We are not sure when his next
treatment will be, since he will begin having treatments every three weeks now.

On December 10th we had a small party for Alex's 2nd birthday. He had a lot of fun opening his gifts. It is fun to watch him now that he
really understands what is going on. We had a big truck pinata and he loved it! It took him a couple of minutes to understand that he
was actually allowed to hit it hard. When the candy finally came out he was so surprised that he belly laughed and was unable to grab
the candy at first. He loved everyone singing to him and blowing out his candles. It was a great time.

On December 11th we went to the clinic party at the hospital. We all had a great time. They had food, music, Santa, a black and white
picture booth, MN Zoo reptiles and a magician. It was a lot of fun and Alex and Santa had a special connection!

Well the big day has come and gone. We arrived at the hospital at 8AM and left the hospital at 4:30PM. It was a long day of hurry up and
wait. We first had Alex's port accessed and a physical performed at the clinic. Next we went to X-ray. As with the last couple times, Alex
struggled through his X-rays. He does not like to be held down or taped down though each step of the process. Then we went and had the
injection for the bone scan. Alex's port access had come out so they had to access it again with no numbing cream. Next we went and
played in the private play area while we waited for the injection to take hold. When we went back to the room to wait for the bone scan
Alex feel asleep in my arms. This actually helped because they did not have to put him to sleep for 90% of his bone scan. We cannot
believe that he actually slept through most of it. He did have to be put to sleep for the last part of the bone scan and the CT scan. After
Alex woke up and we were in the clear, we headed back to his clinic for him to be given chemo. We were also given the results of his
tests. Alex's lesions are getting smaller, but they are still there. There is no sign of new lesions or that the disease is in an active state of
destruction. This is all very good news. Alex did receive another chemo treatment today and will be on Prednisone for the next five days
and then he will go off of it until his next treatment on January 6, 2005. We have now moved into the maintenance portion of the protocol
and he will receive treatments every three weeks through March. In March we will have another set of X-rays, a bone scan, and a CT scan
to check the progress again. This routine will continue every three months for the next year. I am not sure where we will go from there. We
are happy that things are still going in a good direction. Thank you for everyone's good thoughts and prayers.

Our first trip to the emergency room. I guess there is a first for all things and we have been lucky up to this point. On December 30 Alex
began to "get sick" at about 10:30PM. His sickness continued every 45 minutes through the entire night. It was tough to watch and to stay
awake through the night. Alex sat between Tom and I in bed and we helped him through the night. In the early morning he began a fever of
103.5. This was not good news. We called the on-call doctor and were told to bring him to the ER. Emily spent the day with Grandma and
Grandpa and we were off expecting to spend New Years Eve at the hospital. Alex received IV fluids, antibiotics and anti-nausea medication
through his port. It took them multiple attempts to access his port, which was hard to watch. By 4:00PM Alex was doing much better and
we were able to take him home. Alex slept from 6:00PM to 8:00AM, as did we! On Sunday he seemed to be back to normal, though he was
not interested in eating. Then on Monday he got sick again and a fever was present by night. We were able to keep him home and monitor
him for the night. Again on Tuesday he seemed back to normal. Emily was then sick by night fall. We made it through in the end and we
hope it was our first and last ER visit for Alex!

Alex had his 15th treatment today. His blood counts are looking good. He has not lost any more weight. He does look thinner now; I think
he lost some of the puffy look over the last couple weeks. He is still 44 pounds. He does not eat very much, so we thought he would have
lost more weight by now. Today Alex decided to sit by himself for his blood pressure and temperature check. It was so cute. He was so
matter-of-fact about the entire process. He had a good treatment today. There was a little trouble accessing his port, but he is such a little
man about it. He just turns his head to the side and whimpers every so often. I am always amazed how well he handles what is happening
to him. It is hard to watch and so cute at the same time! He is so happy when we go to the clinic. He has all the nurses gather around to
say hi to him. He loves the attention. The hair "fuzz" he has coming in is blonde! The doctor said that it will probably return back to its
original red color, but that there is a chance that it may not. We will have to wait and see! Today Dr. Richards played ball with Alex while he
checked him out. Alex loves the interaction. He is sure growing up fast! He danced around the room to music from a toy. I took a video of it
(some day I will figure out how to put a video on this site)! Again he just made us smile! He has two more treatments until his next set of
scans. His next appointment is on February 17.

Over the last few weeks two children have lost their battle with LCH and HLH, Brady Stewart and Tucker Anderson. You can view their
websites through www.caringbridge.com. Our hearts and prayers go out to these families. We were able to meet Tucker's parents when we
were at the LCH conference in Chicago. We cannot imagine what they are going through at this time. Please say a prayer for them.

Just a quick update. Alex will continue his weekly treatments through April 21, 2006. It is one-and-a-half months longer than anticipated.
He will receive his next set of scan (X-rays, Bone Scan and CT Scan) on February 17, which is also when he will receive his next chemo
treatment and Emily's will have her four year check up. It will be a very long day. He will then continue with the chemo until April 21st and
then have another set of scans on April 28th. We remain positive. The Prednisone this past week has got Alex all fired up! He is a wild
boy! He has started to complain about pain in his hip when we change his diaper. I am trying to convince myself that it is just pain from
all the healing that is taking place, but we will be talking to the doctor about it also. It is so hard now because with every little pain,
cough, red bump, sneeze, cry or whimper Alex has I wonder if it is a symptom of something more. It can be maddening at times. I will
update when I know more.

Alex had his x-rays, bone scan, CT scan, and chemo treatment today. Emily came along today so she could have her four year check-up.
Her check-up went well and she received two shots. She was not able to receive her MMR shot, due to Alex's treatment and immune
system. I am sure Emily did not mind having to miss out on one of her shots! Alex had trouble with the x-rays once again. He does not want
to be placed on the table. Emily sat behind the lead wall with a couple of books so she was safe from the x-rays. It is harder to bring Alex to
his tests now. He recognizes the radiology waiting room and cries when we go in there to wait for his next appointment. We had to wonder
the halls to keep him occupied. Grandpa came and picked up Emily at 1pm to she did not have to spend the entire day at the hospital.
Between the x-rays and Ct and bone scans Alex had his port accessed for the bone scan injection and chemo. There was some trouble
accessing his port today. Then we went to the clinic on the fourth floor to have his blood drawn for labs. We played in the clinic waiting room
until Alex's appointment for chemo at 1:15. Next we went back to radiology for the CT and bone scan. After Alex was awake and able to go
home we went back to the clinic to see if they had any results. We were able to find out that at first glance they see no new lesions and his
current lesions are still getting smaller. We should find out more details next week. The doctor also said that Alex's iron has been
consistently getting lower and that they would let us know next week what they want to do to fix it. We are happy that we are still on the
right path for Alex's treatment. We will go to our next chemo appointment on March 10, 2006. Thank you for your positive thoughts and for
checking in on Alex.

We made it through treatment # 16. Alex had to lay down on the table today for his treatment. It is too difficult to access his port when he is
sitting up. He does not like to be held down for anything, so it was tough today. Alex still made it through and was in good spirits when it
was all over. We were able to see Dr. Richards today, which makes all the difference to us. We always feel better when we are able to see
and talk to him. Alex has two more scheduled treatments. The first is on March 31st and the second on April 21st. We will then have a full
skeletal survey, CT scan and bone scan in the beginning of May. We should be done with treatments after April 21st! We hope that all will
work out as scheduled, even though we know that life does not always work out that way. Alex would then continue with scans every three
months for the first year. His port would probably remain in for at least three months. Dr. Richards does not want it in any longer than it
needs to be, as it remains at risk of infection. Alex's scans looked good from February 17th. He confirmed that there was nothing new and
that the lesions are smaller. Dr. Richards also explained (again) that Alex's lesions were so big to begin with that it may take up to two years
for them to actually be gone from his hip and shoulder. This means that when we stop treatment Alex will still have the lesions, but they
should remain inactive. We are again very thankful that all is looking good for Alex. I cannot believe that we have been doing this for seven
months now. I can still remember September 8, 2005 like it was yesterday. I had no idea how we were going to do this, and yet somehow
the time has gone. One moment at a time, one day in a life. We are going to be attending The Big Meeting in Ohio in July. We are excited to
be able to focus and learn about Alex's future now. When we attended the Chicago meeting back in October of 2005 we were only able to
ask and worry about the present. I am glad to say that we are now able to start to look ahead.

Alex's iron level is also low. I mentioned this in my last journal entry. We have now started him on vitamins, which he has a hard time getting
down. I crush the vitamin up and mix it with sugar, but he still has to fight to keep it down. I think it is funny only because he loves to take his
Prednisone, which I have tasted and it tastes like gasoline. Thank you for all of your thoughts and prayers. We could not have come this far
without them.

Hello to all. Alex has been battling a fever over the last couple days. We called the on-call doctor this weekend and were told that we could
keep an eye on him at home. We were OK with that and he has been doing fine. It showed up again in a mild form today, but he is still
looking good tonight. He goes in this Friday for his next treatment. We hope that this will be one of his last two treatments.

Alex is doing a great job taking his vitamins now. We do not need to crush them up or hide them from him. He is such a big boy these
days!

We celebrated Emily's 4th birthday a week ago. Both of the kids had a great time. They love the attention and the pi�ata, which has
become a birthday tradition for us and the kids. I will add some pictures of the party this coming week.

I also want to mention that I am putting a book together for THE BIG MEETING in Cleveland, Ohio this coming July 9, 2006. I added a page
with all the information (HISTIO HISTORIES). I am very excited to get involved with THE BIG MEETING and help out in my own way. I hope
that we have a large turnout and that every family can benefit from the information that families submit. Please email me if you have any
questions.

Have a great week and I will write again after Alex's treatment on Friday!

We ended up at the emergency room this week. Alex's fever was persistent and we ended up having to take him in on Tuesday night. He
looked miserable. His cheeks were flushed, his head was hot, and he would not get off the couch. When I came home from work on
Tuesday he did not run to the door yelling "Mommy" like normal. We took his temp and called the doctor. They asked us to bring him in
since it has been going on since Sunday. We got to the ER and boy was it busy! We waited about an hour to get checked in. Once we
were checked in we were brought to a private room. The ER is very good at separating children who should not be exposed to the other kids
in the ER. We waited in the room until we were able to be seen.

The doctor completed a strep test and accessed his port for blood work. Then before the doctor could leave the room, Alex vomited all over
both of us. We were able to change Alex's gown and clean him up. I, however, did not have more clothes. I had to take the t-shirt under
Tom's sweatshirt to "clean-up". They had a little trouble accessing his port, but it was nothing like the last time. His strep test came back
negative and his counts looked good (for where he is currently at in treatment). He was given antibiotics through his port and the blood
cultures were sent to "cook" overnight. We were able to go home around 10:30 pm. Emily was with Grandma and Grandpa for the evening,
by the time we got home from the hospital it was late. She was a little cranky the next morning! Alex still had a fever Wednesday morning.
We called the doctor to check in and were told to wait and see if the antibiotics would kick in throughout the day. Tom stayed home with
Alex on Wednesday. Alex still had a fever last night (Wednesday) when I got home from work. After dinner Alex vomited again. This time it
was on the carpet and not me. Neither one is fun to clean up! => I am home with Alex today and he is looking much better. He no longer
has a fever and his blood cultures came back negative. Alex has his next treatment tomorrow. We are all glad that should be able to
continue with his treatment as planned. Whatever was bugging him this week is hopefully gone for good.

On a side note...one of the reasons that the doctors worry about his fever is due to his port. It is always at risk of infection. An infection
would most likely mean immediate surgery to remove his port. We are lucky that all has gone as "planned" with his port and treatment thus
far. I will write again after his treatment tomorrow.

Alex's treatment went as planned today. It was treatment #17. We got there in the morning and were able to go back to a room right away.
When Alex saw Rachelle he ran to her and gave her a big hug. It was very cute! His port was accessed and blood samples drawn. We were
in a room with a TV and movie selection today. Alex was able to pick out a movie to help pass the time. I cannot even remember what movie
was playing. We were also right across from the food station. Alex knows just were the cracker drawer is located. We were over to "visit" it
multiple times. Alex was able to take his blood to the "rocket" again today with Rachelle. He sat on the stool in front and waited for it to be
sent off to the lab. The lab was backed up and very slow today. After waiting for some time, we were able to go forward with the treatment.
We were able to see Dr. Richards again today. All things seem to be back on track.

The information is now out in the histio world about the Histio Histories (The Big Book of Histio Kids) book that I am putting together for THE
BIG MEETING in Cleveland, Ohio on July 9, 2006. You can see the information by clicking on the Histio Histories link on our home page.
Please feel free to email me with any questions you have about the project. I have already received so many emails regarding it. I am very
excited and hope to have a large turnout. Every family has a story to tell...what is yours?

OUR LAST SCHEDULED CHEMO! We are very happy to say that we have completed our last scheduled round of chemotherapy. I say
"we" because this has been a journey that has affected everyone in our family unit. It has been a tough road for Alex, but Emily and the
rest of us were on this journey with him. All of our lives changed in so many ways...

It has been a long couple of weeks waiting for this last treatment to arrive. I have to admit I was scared to death for this day to come. I
know it may sound weird to some people reading this journal, but it is scary to be suddenly done with treatment. How do we know that his
body will be OK, and that is on so many levels (LCH, chemo, steroids...). There are a million questions that I could write about his
treatment ending. They are all floating around in my head as I type this journal. Three months will be a long time in between his upcoming
appointments and blood counts. Please do not get me wrong, we are happy to be done with the chemotherapy. We are happy that his
treatment has been working. We are amazed at how fast the time has gone by since September, but I am also scared about his future. I
now realize there is no going back to "normal". It was taken from us the day we went to the fourth floor oncology department. There is no
more normal.

A couple weeks back, I spent a few days in tears. I was so lost. I have a hard time looking into the rest of our lives with this amount of
worry in my head. I will always be wondering if it is coming back and where? Will I know it is back? Will a test show it is back? When will I
be able to stop worrying about "it"? The answer is that I won't. We won't. It will be a reality in our life from now on. I am coming to terms
with this, I think? We will have to create a new normal that works for us. I found a lot of comfort on a website I found that shared parents'
thoughts as their own child was coming to the end of chemo. I was amazed that so many of them felt just as I was and do feel. It gave me
comfort to know that I really am not crazy (though some may still argue).

Alex's last treatment went as planned. It was nothing out of the norm. His blood counts were the best they have been since we began this
entire process. I felt good when we left the clinic. We will go back in on May 9, 2006 for Alex's skeletal survey, bone scan and CT scan.
Next we will meet with Dr. Richards to view the scans from the first one to the last one. I really want to know everything I can before we
walk out that door. I want to see how small the lesions are at this time, compared to the beginning. I want to understand as much as I can
so I can try to feel some sense of control. I know that I can not control this situation, but I want to be knowledgeable in it (if that makes
sense).

It will take Alex three to six months to get his immune system back to "normal" (there is that word again). He will continue on the
antibiotics for the next three months. We will need to go to the clinic every three weeks to have his port flushed. We will have his port
removed after his three month scans are complete (August or September) and the results are good. This will require a same day surgery.
We still have a few bumps to overcome and test to pass, but we are looking good. The doctors said it may take up to two years for his
lesions to be gone and healed. We are willing to wait.

I will update again after his tests are complete and we know the results. Keep praying. We appreciate every prayer that is said for us and
Alex. I know they have helped us every step of this journey.

Hi to all! Sorry it took me awhile to update the website. It has been a busy two weeks. We had a family wedding, Emily's dance recitals,
dance rehearsal, amongst other family events. Emily was adorable in her first dance recital. There is a picture of her in cotume in the
picture section.

Alex's scans went really good on Tuesday. We arrived early in the morning. The skeletal survey (x-rays) was first on the list. For the first
time ever, Alex made it through the x-rays from head to toe without a single tear. He was very scared and he did not speak one word, but
he made it through it better than expected. Once we were done, Alex had his port accessed and the radioactive injection. Next in line was
the CT scan. Since Alex did so well in the x-rays, we decided to try the CT scan without putting him under. Again he was a real trouper.
Tom and I stayed in the room and I held his hands. We talked him through the process and he did great! Again he stared around the room
and did not say much at all, but he held still as he was told by the doctor. Next we waited for the bone scan to begin. We passed the time
by pushing Alex up and done the hall on a sliding chair. He thought he was the king of the hospital. Alex is recognized by many of the
hospital staff. They comment and love his red hair! Alex was put under for the bone scan. We did not think he could handle the machine
inches above his face. We were right. He was on the table for only a few moments when he began to scream. He was put under
mid-scream. We take it step by step. He has been through a lot as his young age.

We did not get the results until the next day. Everything looks good and we have an appointment to meet with Dr. Richard on May 11.
One last thing about our day at the hospital, while Alex was having the x-rays, I was rubbing his head to comfort him. I found a small pea
size bump on his forehead. It feels like a frozen pea under his skin, just above the eyebrow on his left eye. Needless to probably say, I
freaked out. My stomach hurt so bad and of course I thought the worst. We brought him up to the clinic to show the nurse after all his
tests were complete. They said to wait and see if it showed up on the tests. It did not. The doctor does not think it is related, but we are
going to watch it. He does not feel any pain when I touch it. All I can say is Please God let Alex be OK. I can't help but worry about him
and his future.

We saw Dr. Richards today to discuss Alex scans, from the start to the present. We discussed his continued treatment and future plans.
Alex will be going in every four weeks to have his port accessed. When we go back in for his first four week port access they will do a
complete blood work up. He will also have tests completed every three months for one year and then six months for the next. At his first
three month appointment, Alex will have x-rays from head to toe only. The next three month appointment will be completed with x-rays
and a bone scan or CT scan. We will then discuss the next step. Dr. Richards would like Alex to have his port in for six months unless he
has a complication. If there is a complication, the port will be taken out immediately.

Dr. Richards took us down to the radiology department during our appointment. We were able to sit with both doctors and view Alex's very
first test results and his last ones. I can only say that I am AMAZED at the change in his bones. It still blows my mind that you can give a
toddler what is essentially poison and steroids and it helps the body fix itself! Until I saw these x-rays and bone scans, I really had no
idea how big the lesions were in his shoulder and hip. One-half of his hip bone was completely gone, fully dissolved and the hole in his
shoulder was huge. It was just a black hole on the x-ray. The most current results showed that the bone is growing back in to these
places. Like I said...I am AMAZED. I am so glad that we took the time to have this appointment. I am even more grateful that Dr. Richards
took the time to bring us to radiology to view the scan with the radiologist. It has made all the difference in the world.

The only thing left to do now is wait and pray. Every pray is heard and we appreciate every one of them! It is the waiting that is so hard for
all of us. This next year will be the hardest. If the LCH were to become active again we are not sure what path we would be on next. It
would all depend on when and where it returned.

Alex's immune system has about three to six months to return to normal. We to have been trying to return to our new normal life. It is not
easy trying to change the patterns of behavior we have enforced over the last eight months. We will take it one step at a time, one foot in
front of the other. Everyday that we are one more step out of the woods is a beautiful day for all of us!

I will continue to update the site and keep everyone informed! I am planning on adding a couple of things to this website. Stay tuned in to
see what they are! Thank you to everyone.

OK - I know it has been awhile since I updated Alex's website. I will get a few things out of the way. Alex went in for his blood counts
and port accessed on June 2, 2006. His blood counts looked good. His ANC is on its way up. It is not great yet, but we are only one
month out of treatment. The rest of his check-up went well also. The bump on his forehead is slightly smaller and we are just watching to
see what it does right now.

The Histio Histories book that I am working on for THE BIG MEETING is getting a huge response right now. The first deadline was on
June 9th, but it was extended to June 15th. I have received more emails than I ever expected and I love it. It is a lot of work but all worth
it. I just hope that it turns out as good as it looks in my head.

Last but not least...the hardest part of my update. Alex has been having trouble with his left leg since last Thursday night. He woke up
on June 8th screaming and crying. His kept saying that he had pain, but he could not show me where and he could not stop crying. After
about ten minutes he seemed OK and asked to go back to his bed. I thought it was just a cramp, right? On Friday he had trouble
walking after he sat at the table (at daycare) for his lunch. When he got up from the table, he fell down in pain and was not able to walk.
We watched him over the weekend and he seemed fine. On Monday he fell down again in pain at daycare, after sitting at the table for his
snack. Today it happened twice at daycare. His booster seat was removed from the chair at daycare and it still happened this afternoon.
I am not sure what is causing the pain or his problems walking, but I can tell you what my mind is thinking... I called the nurse today and
they would like to see Alex. We have an appointment with Alex's doctor on Thursday. I am trying not to freak out, but I am sure many of
you reading this can attest to the fact that it is not at all possible to control my thoughts or feelings right now. All I can think of right now
is that we cannot possibly do all of this again...and that is the best that I can do right now. We all remain strong for our children because
that is what a parent does in times like these. I just do not know how I would do it all over again, how Alex would do it all again. I am very
hopeful that we are still one of the lucky families who get to go through this once and be done. There must be something else that is
happening to his leg? The LCH was originally in his right hip and left shoulder, not his left leg. At the same time, I have read too many
stories about treatment ending and the LCH showing back up again to be 100%, OK even 25% sure that the LCH is not back again.

I will update on Thursday after his appointment. Please say a prayer for Alex and our family.

Here we go...Alex does not have a reoccurrence of LCH (that we know of). Alex received an overall check-up today and he was
diagnosed with Toxic Synovitis. I know another medical term. It is basically a virus that settles in the hip or joint of the leg. It causes a
lot of pain and usually coincides with a cold, which Alex started at the end of last week. The most ironic part is that Toxic Synovitis is
the very first diagnosis that Alex received when we first saw his pediatrician back in August of 2005 for his limp (and we all know how
that turned out). In all reality I really trust Dr. Richards and I am well aware that I am highly sensitive to anything that is going on with
Alex since his diagnosis with LCH. I was scared, scratch that - I am still scared. I am still worried, but glad that it seems to be
something other than LCH. He did not have any symptoms on Wednesday or today, which gives us all the more reason to settle on this
diagnosis. Maybe now I can get some sleep tonight! =>

Thank you for all your prayers and positive thoughts!

Hello to everyone!

We are off to THE BIG MEETING in Cleveland, Ohio! We are getting ready, as I write this, to jump in the car and drive to Ohio!

The Histio Histories book is complete and packed in my truck ready to go. I think the book looks amazing and cannot wait to see what
everyone else thinks!

UPDATE ON ALEX -
Alex's leg pain is still happening. We brought him in to the doctor last Thursday, for port access and bllod counts, and we were also
able to see Dr. Richards. We decided to have x-rays completed on his left leg and both hips. We all wanted to make sure that this leg
pain was not the LCH returning since chemo stopped.

I am very happy to report that the x-rays looked good. They could not see anything new on them and they even reported that the right
hip looks like it is continueing to heal.

We took the kids camping two weekends ago and to Grandma Sharon's at the lake last weekend. We have been on the go a lot this
month. I put a couple pictures on the site.

I will write about our adventure to Celveland when we return. We are so excited to be able to meet all of the bike riders from THE BIG
FIX!

THE BIG MEETING!

(The pictures from THE BIG MEETING are under "THE BIG MEETING - pictures".)

We had a great time at THE BIG MEETING in Cleveland, Ohio. We left MN on Thursday and drove through to Toledo, Ohio. We found a
hotel with a pool and moved in for the night. It was a long drive, but we all made it in one piece and had a good time along the way. We
made good time through Wisconsin. Chicago was a traffic and construction mess, but we got through in a couple of hours. Indiana had
the best rest stops. Ohio was nicer than I ever pictured. It was clean and Cleveland was friendly and easy to get around with the kids.
We will happily go back to visit Cleveland in the future.

When we arrived in Cleveland on Friday morning, we checked into out hotel. It was a very nice hotel in a great location. We walked
across the "park" and had lunch in a downtown mall. The kids went back to nap and I met with Mike Golding. Mike is the amazing
person who put this entire weekend together.

Friday night we were able to go to the Cleveland Indians baseball game. It was a great outdoor stadium. The kids loved being able to
play in the kids area of the stadium. Before the game ended, it was time to bring the kids back to the hotel. We walked back through
downtown Cleveland.

Saturday we spent more time around the city. We had lunch at the Hard Rock Cafe and spent time in the pool. Saturday night we
attended a party at The Old Angle Tavern in Ohio City for all the families at the meeting. The kids had a great time.

Sunday we were off to THE BIG MEETING at the Rainbow Babies Hospital. The kids were all set up in two rooms just upstairs from the
meeting. They were able to watch movies and play with a ton of toys. The PetPals made a visit with a number of dogs for the kids to
meet. Build-A-Bear also brought in bears for all the kids.

The meeting itself was wonderful! We meet so many families and kids. The doctors who took the time out of their weekend to come and
speak were amazing. We learned a number of new things about LCH and Histiocytosis in general. They revealed some numbers from
the protocol of treatment that Alex is enrolled in, LCH-III. Though I despise saying this...his chances look really good (bone only
patients). The reason I struggle with those words is that Alex's chance of getting this in the first place were 1 in 200,000!!! "Chances"
have a whole new meaning to us. They no longer give a feeling of comfort.

After the meeting was over a large number of us went to the hotel for a pizza party in the hotel. We were able to talk to one another and
take pictures. It was a great time. The kids played in the pool at the end of the day.

Back in our room, Alex started to feel sick. He was warm and had a cough. We got up at 3:30 am to begin the drive home. We hoped
to make it back by supper time. Alex had a long ride since he did not feel good. He ended up with a cold, probably the same cold that
each one of us has dealt with over the last three weeks.

I almost forgot to mention Flashes of Hope. This is an amazing non-profit organization that takes pictures of children with life threatening
conditions. Professional photographers volunteer their time to take the pictures. Alex, Emily, Tom and I were able to be photographed
by them. As soon as I receive the photos from them, I will place them on the website. I cannot wait to see what they look like, as both
the kids were very camera friendly. There is not currently a chapter in MN, but they said there will be one soon!

Alex had his first three-month post chemo test today. We arrived at the clinic at 8:00 am. We were able to sit and chat with Dr.
Richards before the clinic opened. Our appointment today is with Dr. Bendel. The clinic opened we went in and waited to get called.
Alex and I played Pac-Man and one of the doctors gave him a new friend. It is a cute little stuffed dragon. Alex was then called back to
a room. He was weighed, measured, had his blood pressure and temp taken. Rachelle came in and accessed his port. Blood was
taken. Alex helped through the entire process. As soon as Rachel walked in the door he asked her to take his tape off (over his port
with the numbing cream). He is such a big boy now. He use to hate having the tape removed, and now he is asking to have it done. We
saw Dr. Bendel. She checked Alex out and gave him to all over OK. Alex no longer has to take the Sulfatrim antibiotic anymore! It is
funny, because I think Alex will miss taking the medication. He has been a real trooper when it comes to all the medications he has
had to take. We were then off to the radiology department. Back to the same room where it all began back in September. I still feel
weird sitting in there.

Alex had head to toe x-rays taken. A full skeletal survey. It took a few tries to get some of the pictures. It is not easy keeping a two
year old still for that long and for that many x-rays. Overall Alex did a great job. He also was able to make a new friend in radiology.
This one is a stuffed Ostrich named Stretch.

The biggest hit of the day was when Alex was able to pick out a treat form the vending machine. He picked cool ranch Doritos. He was
so cute about the whole thing. I love to watch the doctors and nurses smile as they watched him pick out his treat. He makes so many
people smile ear to ear.

We heard back from the clinic at the end of the day. ALEX'S BLOOD COUNTS AND SKELETAL SURVEY ALL LOOK GREAT! The
best news we could have asked for and it is exactly what we prayed for!

Hello to all!

Alex developed a 103.9 fever at day care today. It was up to 104.5 in a short time. The nurse had us give Alex some Tylenol to keep it
from going any higher. It is only a big deal because we are not allowed to give him Tylenol without permission, as it can mask things
that may be wrong with him. And then we were off to the ER. Emily was dopped off at Granndma and Grandpa's house. We got the
the ER and were put back in an isolation room. Blood samples were taken and a number of people came in and out to take a look at
him. There were a couple residents learning and watching on the job. Alex's red hair had something to do with it also. A little boy with
red hair seems to attract people and travel fast through the ER staff! When we arrived at the ER Alex cried because he wanted to go
to the doctor's office. He did not understand that we were at the doctors. It was cute! They were able to access his port on the very
first try this time! It made a big difference in the stress level of the room!

His blood counts looked good and the blood cultures have to grow over night and through the next week. They gave Alex some
antibiotics and flushed his port. We got home with Alex around 10:30 pm.

Hello to all! Alex goes into the doctor's office tomorrow for blood counts and to have his port accessed. It has been four weeks since his
last access. His next scans/tests will be in November. If all goes well with those scans, we will go forward with setting a date to remove
his port. We are both excited and afraid to have his port removed. Without his port, Alex will have to have blood taken from his arm. We
will no longer be able to use the numbing cream. It will be hard to see him in pain. Right now he LOVES to go to the doctor. We would
hate to see that attitude change. I think our biggest fear is that the port will have to be put back in some time down the road. In the end
though, we agree with the oncologist, it is better to have the port removed (assuming all is well on his tests). The flu season is just around
the corner and the port is in more danger of becoming infected.

I am not sure where to begin this journal entry? It has been some time since I have been speechless! So much has happened over the last
two months. Alex has had his port accessed twice, once in September and again just last week in October. He is scheduled to have his
next set of tests on November 3, 2006. He will have a bone scan and skeletal survey. We have a consultation set up with Dr. Richards the
following week. If all goes well, and we pray that it does, we should be able to talk about removing Alex's port. This will give us one less
thing to worry about during flu and cold season this year. Alex moved out of his crib and into a full size bed - my little baby is now a little
boy - I never thought that I would see the day. Alex also had his 2nd haircut ever, which is the first one post chemo and the return of his
red hair! We took the kids camping on Minnesota's beautiful North Shore for the first time (for the kids). They loved it and it is just so
amazingly beautiful up there. It was so nice to be able to see it and enjoy it once again. We love it up there! Emily started pre-school and
gymnastics - where has all the time gone? As I mentioned in my last journal, we lost Tom's mom. That was a very tough one for all of us.
Shortly after that our basement flooded (our finished basement). We had to remove all of our carpet. We had a brief melt down of the "when
will all of this %*^#@ bad stuff end" in our house for a couple of days (OK maybe a bit longer than that). All in all though, Alex is still on
the right path and we are so very thankful for that right now. We are POSITIVE that 2007 is going to be our year. Tom and I are celebrating
our anniversary today - 8 years married - 11 years together. Now I really do see the time passing! Thank you for checking in on us and I
hope that all is well with everyone who is reading our webpage. Thanks for your support, kind words, prayers and encouragement. It may
be tough for us to show most of the time, but we really appreciate every little thing that has been done for us and said to us!

One day after the tests. We are all a little tired, but doing OK. Alex had a skeletal survey and bone scan yesterday. He was put "under" for
the bone scan. We talked about trying to leave him awake for it, but in the end we decided against it. The bone scan runs inches from his
face for a period of time. We all agreed that he would not be able to sit perfectly still for the amount of time needed for the scan. Alex did a
great job with everything that went on around him. We arrived at 7:00 AM for his port access and the radioactive injection. It takes about 3
hours to get into his system for the bone scan. Next we went back to radiology for the skeletal survey. It is a little harder to complete after
he is accessed, due to the needle that is sticking out of his chest. The needle is about two inches off his chest. At 8:30 AM we went up to
his forth floor clinic to have his blood work completed along with his health and physical. We then had to be back in radiology by 9:30 AM.
We then waited to be brought back to the next private waiting area for Alex to be prepared and visited by a number of nurses and doctors.
After some time, we were all brought back to the bone scan room. A few more things are done to get Alex ready and then it was show
time. Tom held Alex, as usual, when he was given the medication to be put to sleep. I told Alex he was going to take a little nap and just
as he responded "I don't want to take a nap", his eyes slowly closed. I still have a hard time watching this happen to Alex. He always
takes a really weird sounding breath when he first goes under. They continue for a couple minutes. It is hard to be there, but there is no
other option. Tom and I then waited for the test to be complete and for Alex to be brought to recovery. All went well. Alex woke up in a
crabby mood this time. Usually he wants his juice and crackers immediately, this time he would have nothing to do with juice, water or
even a popsicle. Eventually he did have something and we were able to go home awhile later.

Last night we got a call from Dr. Richards. His preliminary results say "marked improvement". We all take that as a good sign. It seems
there are residuals in the shoulder that are showing up in the bone scan. He said that all the test would need to be reviewed and that we
would talk in more detail next week. The lesion in Alex's shoulder was smaller than the one in his hip, so we are not sure why the shoulder
one is showing up more than the hip. One thing I do remember being told, was that the growth plates in a child's hip make it harder to see
that area. The growth plates show up in black, as do the lesions. We have an appointment with Dr. Richards next Wednesday. We will talk
about his tests results, possible port removal and what the next six months will hold for Alex and out family.

Thank you for checking in with us. I will update everyone again after we meet with Dr. Richards.

Alex is having his port removed this Friday, December 15, 2006. We are anxious to have the port removed, but scared to put Alex through the
surgery. He is better off without the port this winter and flu season, as with every fever comes a trip to the ER for Alex and us. At the ER
there is a series of testing and waiting to make sure that Alex and the port are all OK. If by chance the port was not OK, they would remove it
by emergency surgery. We are happier with the alternative, a planned surgery. We will be happy to have that worry removed from our lives
and Alex's body. The only potential issue, besides the risk of surgery, is the "return" of the active LCH. This would mean another surgery and
the insertion of another port. We have our fingers crossed and are hopes high that Alex will never need a port again.

Alex celebrated his 3rd birthday on December 8, 2006. We celebrated by taking the kids to Chucky Cheese (Alex got to pick the place). The
kids had a lot of fun. On Saturday night we had a birthday party at the house for Alex and his cousin Jacob, who had his birthday on
December 9, 2006. It was a fun time and Alex had a blast playing with his cousins. The Superman pi�ata was the hit of the party, along with
the Superman cake.

I also wanted to update everyone on the last appointment we had with Alex's doctor. After Alex's last test results, we were able to go in and
have a sit down with Dr. Richards. As we sat down in the room with Dr. Richards, he began to tell us that he spent a lot of time on the phone
with radiology about Alex's tests. Immediately my heart began to race and I was not sure where he was going with his words. He then said
that he simply did not believe the radiologist findings. In the radiology report for the bone scan it stated that Alex's hip looked "NORMAL".
(On a side note, I have to say that I really have had a love hate relationship with the word normal this last year and a half). Dr. Richards just
could not believe it. We had been looking at up to two years for a report that would hopefully say "normal". So BIG news for us ... we are very
excited. Alex's shoulder is still working on healing, and we will be patient and wait. The x-rays still show LCH's mark on Alex's hip and
shoulder, but we expected those test results. The BIGGEST news of all is that there was no new bone lesions and his current sites are not
showing active.

Alex's blood counts were still low at the last appointment, which surprised me. I guess I thought that they would be higher after six months of
no treatment. Next, after one year of no treatment has come and gone, Alex should be able to get the well check shots that he has missed
over the last year and a half.

Again thank you to everyone for your support and for checking our site!!!

Please note that our little "Buddy" Alex is on the top left hand corner of our Christmas cards this year. His little red headed personality is
shining through in that photo!

One last thing, I almost forgot. Our little Emily Rose decided to cut off 10 inches of her very long and beautiful hair and donate it to Locks of
Love. She was so brave and did a great job. Emily has always loved her long hair, so it was a big deal to cut it all off. In the end, Emily
decided it was all worth it and is going to grow it back so she can donate her hair all over again!

Alex's port was successfully removed on December 15, 2006. We could not have asked for a better day of events. The day started a little
rough for Alex. His port access was more painful than normal. He shed a few tears, but was suddenly OK when it was time to help push the
syringe. After Alex had his port accessed and a health and physical completed from the clinic we went down to the second floor to check in
for surgery.

The surgery before ours was cancelled so everything moved quickly and we got into surgery 45 minutes early. As most of you know and many
have experienced, it is usually the opposite when you check-in for surgery. Alex "drove" himself to surgery with the surgeons help. Tom and I
got all "dressed" up and followed along into the room. Alex was able to be put to sleep by his port, which is just so wonderful compared to the
alternative. Alex wanted to push the syringe into his port all by himself. Three of us all stood around Alex and waited for him to put himself to
sleep. The surgeon said it was definitely a first for him, since the patient put them self to sleep. Alex got half way through the push and then
his eyes rolled back into his head and we all gently laid him on the operating table. I thought I was doing fine, but then I ended up crying all of
the way back out to the waiting area.

They have a great new system at the hospital where a TV screen notifies you at every stage of the surgery. It only took about 30 minutes for
the port to be removed. Alex came out of the operating room awake and very dazed. They had to give him morphine for the pain, so he did not
really respond to Tom or I right away. After that he was back to normal in no time. He did better at this surgery than any other times he has
been put to sleep. They gave him additional medications to help him with nausea this time. They really worked. He never got sick, not even on
the ride home. The last time we went through this Alex got really sick. We got home and he just seemed to be doing so well. He slept fine
through the night and is in relatively little pain today. He still will not give me a full hug, so I know he is still in a little pain.

We were sent home with Alex's port. Emily had asked if she could see it after they took it out of Alex. The hospital cleaned it up and home it
came with us. It was the first thing Emily asked to see when she got home. I put a picture of it in our picture section. It is really amazing to
see outside of feeling it under Alex's skin. It will forever be a keepsake for Alex.

We are feeling happy about the decision to remove his port. I love that he does not have this "thing" in his body any longer. We all really just
hope and pray that we do not have to put another port into Alex in the future. We will continue to pray for Alex's continued healing and that his
body is able to keep the LCH from returning to active status.

Alex will go into the clinic again in February for his next set of tests.

I am still here. Despite all of my good intentions, it took me much longer than expected to update Alex's website. So here it goes... The run
down of Alex's NINE MONTH post treatment check up (can you believe it has been nine months since Alex has had chemotherapy???).

Friday, February 16, 2007

NINE MONTH POST-TREATMENT CHECK-UP/TESTING

Alex had his "nine month check-up" today. He had to have his blood drawn from his arm at this visit. No more port to keep the pain level down.
They had a hard time finding a vein. Once it was found they were able to access it right away. Alex screamed through the entire process. I
think he will remember this visit! We are not allowed to use the numbing cream on his arms. His veins are too small and his arms too big. The
numbing cream tends to shrink the veins even smaller. The port was a great tool, but it came with some risks. We are glad it is out, but sad for
Alex's additional pain. He stills calls his port scar on his chest his port. He is very sensitive about people touching the area. Every so often he
will ask if I can give him his medicine "in here". His innocence makes me smile every day.

He had x-rays, more x-rays and then a couple more x-rays. There were enough "extra" x-rays to make my stomach turn multiple flips. In the
end all is good. Alex's shoulder is still showing signs of improvement. His hip has not changed. The most important factor - NO SIGNS OF
ACTIVE DISEASE. The best words we can hear.

Alex will have his ONE YEAR POST TREATMENT tests in May of 2007 (WOW!). At this point, we are preparing for a skeletal survey and a CT
scan. If all goes well, we will then make a plan for the next year of Alex's journey.

I remember when Alex had his last chemo treatment. I had thought I would want to throw a huge party to celebrate the milestone, but I felt just
the opposite at the time. I was so scared that treatment was ending and worried about the "What if" around every corner. We have come so far
and faced so much... I still wonder when I will be ready to really celebrate???

I want to share a cute story with you� The other day Alex and I walked by a picture of him and Emily. Alex asked me who was in the picture
with Emily. In this picture, Alex was at the peak of his treatment. He was very round and had no hair left, but he is smiling from ear to ear. I
smiled and said "That is you, Buddy (Alex's nickname)." He said "I did lose my hair. That is Buddy." It was so cute. He really had to study the
picture to make sure it was himself. I am so thankful that Alex seems to have no real memory of the treatment. He was only twenty months old
when we began this journey. As I looked at that picture of Alex and Emily, I realized that even though the pain is still at the surface, the
memories are just that - memories. I do not know how we got to this point or how we made it through each and every one of those days, but
we did. Every prayer, even the smallest, helped us every step of the way. At every turn, things could have been worse. We are lucky and we
will never forget.

ONE LAST NOTE...
I am working on a Histiocytosis event scheduled for April 21st in Maple Grove. We are putting the final touches on this week. I hope to have
more news and details about the event soon.... Stay tuned.

It has been a tough couple weeks, not for us, but for many other histio families out there. There seem to be so many relapses recently.
Each one breaks my heart and scares me more about Alex's future. Alex has been through a lot...more than other "normal" kids his age, but
we still consider him lucky on this journey.

One a side note...
During the last few months, Alex lost one of his ear tubes. He had ear tubes put in place long before the LCH appeared to us. Well, one fell
out and now his one ear cannot seem to clear up the infection. We are on our third type of medication and looking into getting another tube
put into his ear. We were hoping to have it done with his next CT scan in order to minimize the times he has to be sedated. (One of these
days I should take an official count of how many times he has been sedated. I have only been sedated once in my life, same with his dad.)
However it works out, we just need to clear up this infection. He spent two days recently with his ear leaking brown fluid. Ick! His sister
Emily would tell you that it was pretty gross. She spent most of the two days yelling "Mom, Alex's ear is leaking again!". SOmetimes you
just have to smile!

The April 21st event - HISTIOCYTOSIS: A Family Gathering in MN - is up and running. Invitations have been mailed and we are waiting for
responses. Due to our limited space, we are giving first option to Histiocytosis families. We will see where we from there....

I added a poem on the home page of Alex's website - Just for Today. I came across when I was searching for baby poems for a baby shower
I was hosting for my cousin. When I came across this poem I cried and cried and cried. This stuff can hit you when you least expect it.

What have you missed since April 16th???? Alex got sick. I thought it was just a normal kid cold, but with Alex - what is normal??? We went to
the doctor thinking it was a cold and an ear infection. We got the ear infection and a lung problem. His oxygen was only at 91%, no wonder he
looked so ragged that day! He was on a nebulizer and has since seemed to recover. There are some big medical terms for his official diagnosis,
but what they really mean in normal terms is - a partial collapse of the lower right lung and the presence of something they find when pneumonia
is found, but does not always mean it is pneumonia...

Here is a summary of events that have gone by, what is happening now, and what is yet to come...

PAST - The April 21st Histio Family Event at the Maple Grove Community Center was amazing. It turned out great and Darci and I are proud.

PRESENT - The information for the golf tournament is available at WWW.LOOKOUTBARANDGRILL.COM (soon on our website also).

PRESENT - Please say a little, or a big, prayer for Alex - as his tests fast (and I mean fast) approach...

FUTURE - Alex has his ONE YEAR post chemo tests. He will have a skeletal survey, CT scan, physical and blood work. Stay tuned for results!

FUTURE - Alex will have an ear tube placed back into one of his ears on May 21st.

Hope all is well out there. Thanks for checking in and stay tuned in for tests results and more news...

ONE YEAR POST CHEMO SUCCESS!

We We made it one year (post treatment) with a successful test date! Alex was able to
complete the CT (shoulder, chest, abdomen, and pelvis) without any sedation. We cannot
believe how much he has grown up since we started this journey! He is growing too fast for
me.

So we did it, actually he did it. Alex's body is continuing to heal his shoulder and pelvis. There
are no new lesions or markers of active disease. We are now able to go SIX months without
seeing the oncologist. That does not free us up from the ENT appointments and two years of
well checks that he needs to get "caught up". We are still happy to hit this special marker on
his path.

Alex will be sedated again tomorrow for an ear tube placement. His left ear lost the ear tube
and the infections have been continuous. We are going forward with the placement tomorrow.
The doctor said he may need to have additional things done, like having his adenoids
removed, but we are only taking one step tomorrow. The adenoids and anything else will have
to wait. Once we are past the ear tube and the well checks we will not have to see a doctor
until November, hopefully!

Thanks for checking in on us.

STILL TO COME...I was able to get copies of Alex's tests - all the way back to September of
2005. I ended up with 7 CD's of images. Give me a week or so to figure out the new program
and I will be able to place the images on the website... From what I have seen they are
amazing. You can see the missing bone (lesions) and how they have healed...simply amazing!

Don't forget to check out our new pictures!

Alex had successful ear tube surgery on May 21, 2007. The ENT placed a new ear tube in Alex's left ear. Then proceeded to complete
check-up on his left ear with the surgical scope. Alex's left ear still had the tube in place from the first surgery. The ENT was able to see that
Alex had a growth in his left ear. It is called a cholesteatoma. A cholesteatoma is a benign growth of skin in an abnormal location such as the
middle ear. It had grown around and under Alex's ear tube and ear drum. As a result, the ENT had to remove the current ear tube and the
portion of the ear drum containing the growth. He then placed a new tube with additional material to close the gap between the tube and the
large hole in the ear drum.

The GOOD NEWS. Alex no longer falls down and trips at the rate he was prior to the surgery. I have been concerned about Alex's balance for
the last six months to a year. I dreaded the thought of this being related to the LCH. I questioned the oncologist at each appointment. I am now
happy to say that something was causing Alex's balance problem, but it was not the LCH. I know it may sound weird to be happy about it, but
under the circumstances it was a wonderful alternative.

Alex was re-checked by the ENT on June 6, 2007. Alex's hearing finally tested in the "normal" range. His ear appeared to be healing on
schedule. We go back to the ENT in four months to have the ear checked.

I think that Alex is determined to keep us from sleeping for the rest of our lives! => If it is weird, rare, or uncommon Alex has his sights set on
it!

EXCITING NEWS...
There will be two golf tournaments this summer. The first one (July 29, 2007) is being put together by The Lookout Bar and Grill in Maple Grove,
MN. The second one (August 4, 2007) is being put on by us and two other local families to raise money for the HAA. Both of the flyers are now
attached on the GOLF TOURNAMENT page. Please take a moment to check out the information and the amazing flyers that were put together
for each tournament.

We wanted to give you a long awaited update on our family and especially Alex. We hope that everyone had a great summer, took time to
relax and that you are ready for a beautiful Fall!

Alex is doing great. He goes in November 8, 2007 for his next set of tests. He is one-and-a-half years out of chemo. We can hardly believe the
time that has passed. Alex has been complaining about some neck pain and (once and a while) pain in his hip area. With each complaint, my
stomach feels sick. We are trying to remember that he is a growing boy and will have the same aches and pains that come with growing and
playing like a three year old boy. Panic must be held back and we try to use the wait and see before rushing to the oncologist.

Alex started preschool in September. The first day was tough for Alex and Mom. Alex screamed "Mommy, don't leave me" while I left him at
preschool. The second time went great and he has been fine ever since. He goes every Friday to preschool. We thought we would start the
process slow. Alex will be four years old in December. What a big boy he is becoming. Due to his size, many people think he is in
Kindergarten or first grade already!! => He is a very big boy.

Emily started full-time Kindergarten in September. She did amazing on her first day. She was not afraid to take the bus or go all alone to
school. She is so darn independent. We know that she will give us a run for our money as she gets older. She will be six years old in
February. We also started in Daisy Girl Scouts. I am co-leader to Emily's troop. It has be