History

Monday, July 25, 2011 10:36 AM CDT

Hi Everyone,

We would really appreciate your prayers tomorrow.

I think I had put an update in March about Alex passing out in school and how we had taken him to the oncologist and everything checked out fine.

Well, last Tuesday we were at the grocery store and I had started to put the groceries up on the belt when Alex said that he felt like he was going to pass out. I started to help him to sit down and he passed out and fell backwards. The people at the grocery store were very helpful. I thought maybe he had low blood sugar, even though we had eaten right before we left for the store.

I called the doctor when we got home and we went in the next day. Alex's blood pressure was low, and since he has passed out before, the doctor is sending us to a pediatric cardiologist. Our appointment is tomorrow at 11:30 a.m.

We know that a late effect of the chemotherapy can be heart issues.

We hope everyone is having a good Summer.

Sunday, April 10, 2011 6:22 PM CDT

Alex is now 9 years old. It's so hard for me to believe! It doesn't seem like that long ago that he spent his third birthday in the hospital with a post-chemo fever.

We have so much to be thankful for. Six years ago, we were facing losing the one child that we had and now this year, we have two children. Maggie loves her big brother so much. She laughs at everything he does!

I think everyday about the children who lost their battle with NB, and I pray for the children who are still fighting.

We had a bit of a scare a couple of weeks ago. Alex passed out at school for no apparent reason. Long story short, the oncologist did a full work up and everything is fine.

Please continue to pray for our little friend Dominique. She is in New York again for treatment. If she gets home in time, her family will be spending Easter Sunday with us.

Thanks for checking in on us!

Sunday, November 28, 2010 9:10 PM CST

Hi Everyone,

As you can tell, we have had a change in our household! We welcomed Margaret Marie Claire Hargenrader on November 12 at 3:41 a.m. She weighed 5 pounds 7 ounces and was 19 inches long. We call her Maggie. Alex just loves her.

Like her brother, she is a much prayed for child. As I had told you all, we have been in the adoption process. We had a failed adoption in late August that was heartbreaking. Craig and I were not sure we read the Lord's will right. But just three short weeks after our failed adoption, we received word of a birth mom due in mid November. There are some special circumstances that I can not share with you, but we were a little hesitant and wrestled as to whether or not we should allow our profile to be seen by Maggie's birth mom. After praying and understanding fully that we are not in control, but God is, Craig gave our social worker the "go ahead". We know from our experience with Alex's illness that we are not in control of anything and that God is in control of everything.

Long story short, a week later, we met with Maggie's birth mom. We clicked immediately, and a few days later, we were informed that she chose us to adopt Maggie. We did not know if Maggie was a boy, or a girl. Our birth mom was supposed to be induced on November 15th, then we got a call that it was going to be November 12th. We rushed around getting things ready, and arranging Alex's plans while we were gone. Well, again, the Lord is in control.....at 1:30 a.m. I received a call that our birth mom was in labor and would probably deliver soon. I gathered my stuff, got in the car and left Craig and Alex behind. It was the longest 2 hour drive I ever drove! Craig and I talked on the phone a good part of the time, the rest of the time I prayed.

I got to the hospital and found my way to the maternity ward, checked in and headed to the room where our birth mom was. Imagine my surprise when the first thing I saw was a beautiful baby laying on a warmer!! I was shocked!!! Our birth mom told me it was a girl and I just stood there in awe!! Our birth mother allowed us the privilege of taking Maggie right away, so I was able to do her first feeding and bond with her. Five days later, we were allowed to bring her home!

Maggie's got two middle names. Marie is to honor Maggie's birth mom, as her middle name is Marie.....I just found out that Marie means "wished for child". How appropriate! Claire is to honor Craig's aunt who is suffering from Alzhiemer's.

Needless to say, our Thanksgiving was full of thanks!! God has spared our precious son and given us a beautiful daughter. We appreciate every single day.

Please keep praying for our friend Domonique. The spot of Neuroblastoma is gone from her arm, but a spot still remains in her head. It is small and the treatment she is receiving is working.

Thanks for checking in on us........

Monday, November 1, 2010 11:57 AM CDT

I can't believe it is November 1st already. I took Alex to his new Oncologist, Dr. Plautz, at the Cleveland Clinic last week. His platelets are up to an all time high of 83. I was thrilled. The doctor looked at me and said "you realize, that is still half of what normal is?" I said yes, but this is a child that was at a platelet level of 7 and 10 for a couple of years! There is always something to be thankful for. Like next time we go to the Clinic, we will be seen in the High Five Clinic.....that is the survivor clinic.

I wish I had an updated picture of Alex, but I have been having computer "issues", so I can't download my pictures until we reinstall the photo program I use.

There really is so much to be thankful for right now. As I was driving down to the Clinic the other day, I started feeling half sick to my stomach as I thought about how many trips we have made over the years to the hospital. Then I was quick to remember that we were going for a routine check and not chemo, and not a long hospital stay.

I still check on several websites of children who were diagnosed when Alex was and are still fighting the disease, or have lost their battles. My heart aches for them. The Lord has been so very merciful and gracious to us. I feel a great deal of responsibility and gratitude for the sparing of Alex's life.

And now, if everything goes as planned, we will be bringing home another precious life to our home just in time for the holidays. We don't know if we are having a boy, or a girl. The baby is due November 14th, and if it hasn't arrived by then, the birth mother will be induced on November 15th. We are cautiously excited, as we have had two adoptions fall through so far. This one does look very promising though.

Alex will have some adjustments to make, that is for sure :) A couple of weeks ago he started throwing a fit and I asked him what in the world was wrong? He said he didn't know if he was ready for the responsibility of a baby!

I will keep you posted, and hopefully by the time the baby arrives I will be able to post some new pictures!

Thanks for checking in on us. We love you all.

Monday, November 1, 2010 11:57 AM CDT

Monday, July 5, 2010 12:28 AM CDT

Hi Everyone,

It has been a busy couple of months around our house. We were so busy getting ready for Relay for Life. It was a wonderful experience for us. One of my friends said to me that from her experience, it would probably be energizing and exhausting all at the same time and it was.

At the beginning of the relay, our family was introduced, then the Star Wars theme song started to play and the co-chairs of the relay presented Alex with a Jedi robe that was embroidered with our team name on it. Craig carried a flag with the word "celebrate" on it. Ava's mom Deana and I carried a banner with the words "survivors" on it, and all of the survivor's names on it. As we led the first lap, all of the other teams were lined up around the track cheering. Needless to say, it was VERY emotional. Deana and I cried almost the whole time. It was such a surreal moment.

Later in the evening Craig and I told our families story to about 600 people. I don't have a problem sharing my heart one on one, or here on the website, but I have never been a public speaker. I know the prayers of many of my friends were with us, because Craig and I stood up on a stage for 10 minutes and shared part of our son's story. God really gave us strength. As we were speaking, there was a huge screen with pictures of Alex scrolling. We were overwhelmed by the response we received.

One of the people in the audience was a man named Abel. His daughter Dominique has Stage 4 nueroblastoma. She has been fighting this horrible disease for over a year. God has put our families together through a series of cirucumstances that only God could plan. Dominique and her mother have been in New York getting treatment since the Wednesday after Memorial Day. Please pray for this family. There are so many details that I don't feel I can share without their permission, but things are dire. We know that God can work miracles, and that is what we are praying for.

Alex has his first clinic appointment on Wednesday with his new oncologist at the Cleveland Clinic. We have had to move all of our health care to the Clinic since Craig is now working for the Clinic.

Thanks for checking in on us. Don't forget to pray for Dominique, she really needs our prayers.

Sunday, April 25, 2010 5:05 PM CDT

Hello Everyone,

LONG, LONG, TIME, no update! I wonder how many people still check the site.......

We had good news last month. Alex's very last PET scan was clean! He is still cancer-free and at the end of his protocol. No more scans! I cannot tell you how relieved we are. Dr. Cooke said that Craig was out of a job for 8 months. Craig started a new job at the Cleveland Clinic on March 15th. He is working as a Division Manager in the Finance and Budgeting Department -- mainly in patient billing -- something we are VERY FAMILIAR with!

We are also in the process of adopting. Craig and I started the adoption process almost 9 years ago, but then I got pregnant with Alex. We feel like we have been given so many blessings that we want to share. Alex is SO EXCITED! He wants a little brother to play with.

Alex was asked to be the Ambassador for the Relay for Life here in Olmsted Falls. Craig and I have been asked to speak at the luminary ceremony. We are so honored. Alex is also going to be leading the survivors in the first lap around the track. I don't think I will be able to contain myself when I see my baby boy wearing a purple shirt with the word "Survivor" across his back. What more could we ask for?

Our family is so thankful for the blessings we are receiving,especially because so many families are still fighting this horrible disease called cancer. When we were asked to speak at Relay, we did not hesitate. We feel that to whom much is given, much is expected. We want to inspire people and give hope to those families who have loved ones fighting. Craig and I always think of the verse in I Corinthians that talks about comforting others with the comfort that you have received. We want to comfort and encourage those around us.

Thank you for checking on us. Without your prayers, our family would not have made it this far.

Thursday, January 21, 2010 10:06 AM CST

Hi Everyone,

Thanks for checking in on us. I haven't updated in a while.

We went to clinic last Tuesday and received some really good news. Alex is finally at the end of his protocol! It took a while for all of that to sink in. He will have one LAST PET scan on March 30th. I think our initial reaction was.......now what? I can't imagine life without scans. Alex will still have to have ECO's and PFT's for the next five years, but those tests are easy, peasy, lemon squeezy. They do not create NEAR the anxiety (or should I say "scanxiety:?) that scans bring.

The way that Dr. Cooke explained it to us is that the farther out he gets from the 5 year mark of his transplant/stem cell rescue, the less likely it is that he will relapse. Of course, there are no for sure guarantees, but things look much better than they did five years ago.

I have to say that one of the reasons I haven't updated sooner was because I had to let this news sink in. We are thanking God in every way for our miracle. However, I still struggle at times with "survivor guilt". You see, I don't understand Alex's survival anymore than I understand others relapsing or passing away. I just know that the Lord is soveriegn over all things.

Craig and I truly believe that to whom much is given, much is required. We have been given the miracle of our son's healing. What more could we ever want or ask for? We see life as a gift every day. We still have "off" days like everyone else, but I don't carry the burdens I use to before Alex was diagnosed with cancer. We feel such a responsibility to tell Alex's story and what the Lord has done for us. It was truly hell on earth......any parent going through the diagnosis of cancer with their child will tell you that. To be where we are now is nothing short of miraculous.

Thank you all for your prayers and support during the past 5 years, that is what has sustained us.

We just recently heard that Mitchel, another neuroblastoma patient relapsed in November. My heart aches for Mitchel and his family. His mom Mary was the first person to sign our guestbook when Alex was diagnosed. We have never met in person, but we have kindred spirits because of our children's illness. Please pray for this family. Pray that as Mitchel goes through chemo and radiation again that the Lord will sustain all of them. His website is www.caringbridge.org/ok/mitchel

Tuesday, December 1, 2009 5:05 PM CST

Hi Everyone,

Wow, I can't believe it is December. Looking at the calendar brings back so many memories. On Sunday it will be 5 years since Alex was diagnosed with Neuroblastoma. Five years!

Five years ago, if you would have told me that Alex would be in first grade and cancer-free, I don't know if I could have even imagined it. I remember feeling so devestated and being so afraid that I was going to lose my baby.

God has been so gracious to restore us. In early October, Alex was in a fashion show at the Quicken Loans Arena (where the Cavaliers play). The fashion show raised money for Flashes of Hope and The Children's Tumor Foundation. There were ten cancer survivors in the show. The show was called "Big Shots, Little Stars". Each child was paired up with a local celebrity. During the finale of the fashion show, all the kids walked down the runway with signs advertising who their "Big Shots" were. Then, the "Big Shots" walked behind the kids carrying a HUGE potrait of each individual child when they were ill. Needless to say, I was crying my eyes out!! It was inspiring to see these kids thriving!! I was SO PROUD to watch Alex walk down a runway with his long hair!!

We are counting our blessings and looking forward to Alex's future, but we will never forget to look back.

We had a good Thanksgiving. Alex had strept throat, so we spent the holiday at home. We made the best of it though. As long as Alex isn't in the hospital getting chemo, we are happy.

Thanks for checking in on us!

Wednesday, September 30, 2009 4:00 PM CDT

Hi Everyone,

Alex had his scan yesterday, and I am excited to say that Alex is still cancer free! Also, his platelet level is up to an all time high of 55!! His nurse Kathy said she almost cried when she picked up his lab results.

Alex has been ill since August 29th. He has only slept in his bed 3 times since then. He has to sleep sitting up. The doctor told us that according to the scans, his sinuses were "packed". I will be taking him back to the ENT and then possibly an immunologist and allergist.

God once again has been so gracious to us in sparing Alex's life. Our family has seen a lot of restoration over the past few months. I am thankful each and every day for the time we get to spend together.

Thanks for checking in on us!!

Friday, September 4, 2009 3:28 PM CDT

Quick update everyone......

Alex will not have his scans on Tuesday, September 8th due to a virus. He missed two days of school this week with a slight fever and LOTS of coughing and breathing treatments.

I'll let you know when scans are rescheduled.

Thanks for checking in on us!

Tuesday, August 11, 2009 10:26 AM CDT

Hi Everyone,

The new picture is of Alex at the Indians game a couple of weeks ago. Alex was chosen to be on the jumbo-tron as a rep of the Kick-it kids. Pictured with him are Sugardale hot dogs and Lindsay and Richie. He got to choose which Sugardale hot dog was the best. (He chose mustard) The two kids pictured with him are his babysitters Richie and Lindsay Rader. They played on Alex's kick ball team with a couple of the Indians players after the baseball game was over. Did that make sense??? When he was being interviewed, the "reporter" told the crowd that Alex is a survivor and that he was at the game to support pediatric cancer research through Kick-it.

We are so thankful to be able to be a part of bringing attention to pediatric cancer research. Allison Clarke has done so much to come along side families and help them to feel they are not alone. That is so important. The portraits that Flashes of Hope provides are just priceless. We are blessed to be a part of such a cause.

We got the official word yesterday that Alex's next set of scans are September 8th at 1 p.m. He'll have to go without eating all that time........On Labor Day, he will have limited activity and a low-carb diet.

For now, we are going to put scans on the shelf and finish enjoying our Summer.

Thanks for checking in on us........

Saturday, August 1, 2009 11:45 AM CDT

Oh my goodness, what a Summer! We are making up for the past four years all in one Summer!! Seriously, I don't think we have ever been so busy doing something other than doctor's appointments! I am overwhelmed by God's mercy every single day. Four years ago, we didn't know if this moment would ever come. It's been almost four years to the day that we rushed Alex to the PICU with a blood pressure of 55/22.

We will never forget where we have come from, but we are thankful for every day and look forward to our future.

Craig's job was eliminated in the early part of July. It's funny how once your family has endured cancer, a job loss seems like a small hurdle in comparison. We are enjoying the time we get to spend together.

Here is a recap of our Summer. Craig's brother Bill and his family came up and played kickball with us. Alex's Jedi Warriors were fierce! We helped to raise over $4,000 for pediatric cancer research and funding for portraits for the families of Flashes of Hope! Speaking of Flashes of Hope, we are so excited! Alex is playing a Kickball game with some of the Cleveland Indians on Sunday, August 2, after the baseball game. Alex will be representing cancer survivors. In October, Alex will debut at the Quickens Loan Arena at a Fundraiser called Big Shots, Little Stars. This fund raiser provides FOH portraits for families in treatment. Alex will be modeling an outfit from Dillards Department Store with one of the Cleveland Cavaliers by his side! Alex will walk out with his FOH portrait when he was in treatment. The idea is for people to be encouraged by seeing the "before" and "after".

The other night, we were invited to go out on a boat with a man named Ray Cull.......Ray takes families from Clinic on his boat on Lake Erie. We docked the boat and had dinner and then went back out on to Lake Erie in time to see a beautiful sunset. Ray asked if Alex was interested in participating in a car show in a couple of weeks. Alex will look at all the cars and decide which is his favorite and then give a plaque to the driver of that car. The idea is the same as the above.......to encourage people by letting them see a miracle.

What a priviledge..........we are truly humbled and excited to be part of these events.

In June, I was able to help out with the Walk-for-Wishes at the Cleveland Zoo. I'm telling you, the opportunity to give back means the world to us.

Last weekend we went to the Oncology Family Picnic. One of the new pictures in the photo album is of Alex and Ava and Michael Harb. If you remember, Ava has been fighting WILMS tumor. She just had scans on Monday and they were clear!!!

This past week, Alex earned another patch for passing all of his requirements for swimming lessons. Last year he was so afraid of the water, and this year he is like a little fish!! We also had a Backyard Bible Club at our house this week. We had 14 children at our house every day! It was controlled chaos!! We had so much fun. Alex didn't want the kids to leave at the end of the day.

What a gift we have been given.

Alex has some neuro-psych testing in a couple of weeks....two days in a row......three hour sessions. The testing will tell us if his memory or occupational skills have been affected by the chemo and radiation. He will do this testing every other year for years to come.

When you pray for the other children still fighting, don't forget to say thank you for Alex's progress.

Thanks for checking on us!!

Wednesday, July 1, 2009 7:43 AM CDT

Hi Again Everyone,

Alex is feeling better, but still has a bad cough. We have been sleeping on the sofas in the family room for 2 weeks because everytime he lays down flat, he coughs without stopping. He still needs to have a breathing treatment in the middle of the night -- at least the sinus infection has cleared up.

Monday was such a big day for us as a family. Monday, June 29 marked Alex being four years out from his bone marrow transplant! That is a huge milestone. Craig took the day off of work so that we could celebrate Alex's anniversary and our 13th wedding anniversary. We have a lot to be thankful for.

I have mentioned Alex being honored at a fundraising kickball game. Some of you may have received an email from me to come out and watch the game, or be on a team. You can even make up your own team! Below, I have included an explanation of this fundraiser.

We are so excited to be part of this event. Craig's brother and his family are coming to play on Alex's team. Alex's team is called "Alex's Jedi Warriors". We have had t-shirts made up with lightsabers on them. Alex is a BIG Star Wars fan and that is why he named his team the Jedi Warriors.

Check out the website at www.kick-it.org. The story is amazing. The kids are amazing! Please think about donating, or better yet, put together a team and come and play with us!

Kick It: Facing Cancer, Finding Cures is a national grassroots fundraising effort with a simple concept: play kickball to unite communities in the fight against pediatric cancer.

The idea originated with a very special nine-year-old cancer patient, Quinn Clarke. He wanted to turn his favorite game of kickball into a fundraiser, so he asked his friend, Ava Harb who was also battling a cancerous tumor, to be a team captain. Together, Quinn and Ava inspired an entire community to get involved. In just five days, more than 500 people were brought together and raised thousands of dollars. Within weeks, games were held in backyards, parks and playgrounds all over the country, proving that everyone - kids, adults, friends, and families - can all make a difference. Thus, Kick It was born.

Kick It is made possible through Flashes of Hope, a national nonprofit organization that changes the way children with cancer see themselves through the gift of photography. We work with award-winning photographers all across the country and create free portraits of these amazing children and their families. More than 4,500 children will be given portrait packages this year alone; this represents 35% of the children diagnosed with cancer in the United States.

We can all accelerate a cure and celebrate these brave children by just playing kickball. So organize a game, join a team, or support a event. You can help Kick It for Quinn, Ava and the thousands of other children fighting cancer!

Your funds will directly help children with cancer and their doctors:

�50% will be donated to the Children's Tumor Foundation and CureSearch, to fund research at the Children's Oncology Group (COG). The COG is world's largest cooperative research organization with a network of more than 5000 physicians, nurses and scientists.
◦10% of revenue will be directed to research at local hospitals when community events raise over $2,000. To be eligible for funding, hospitals must be one of 200 Children's Oncology Group (COG) member institutions worldwide.
�50% will be donated to Flashes of Hope in support of our mission to provide free portraits to children with cancer. Photo shoots are held in 39 hospitals and at 8 summer camps across the country. Thanks to the efforts of more than 1500 volunteers, 86 cents of every dollar is dedicated to program services.

Monday, June 22, 2009 7:43 AM CDT

Good Morning Everyone,

Sorry I didn't update about Alex's clinic appointment right away, but a couple things happened that prevented me from doing that.

First of all, we were a little concerned because Alex's urinalysis from March was a little "off". One of the six levels that is an indication of neuroblastoma -- it's called HVA -- was higher than it should have been. The level has previously been three -- in March it was 27. The doctor was puzzled because the five other levels were in normal range. Alex repeated a urinalysis, and then we waited. Dr. Cooke called us on Saturday to say the level had come down and that things looked better to him. He is puzzled though because by all other indications, Alex is doing very well. Alex had a good PET scan in March, followed by a clear chest x-ray and his blood levels looked good too.

We really appreciate the fact that Dr. Cooke is so thorough. I have to admit, we were a little scared. With this disease, you never know what a day will bring.

Alex's platelets are up to 32! We were so happy with that. Dr. Cooke is new to Alex's case, so he kind of looked at me like I had three heads when I yelled "woo hoo!" as Kathy told me what his platelet level was. I explained to Dr. Cooke that Alex was in the single digits for a very long time, so for him, 32 is awesome........Dr. Cooke laughed and said "I guess it is all relative".

When we were on our way home from clinic Alex said his throat was sore. Of course, I had just told the doctor that he had not been sick since March! Anyway......I thought his throat was sore from the dry air at the hospital.......WRONG!! He ended up getting a fever from a virus and sinus infection. So, he is now on 10 days of antibiotic. But hey, it isn't chemo so we will roll with the punches.

Please pray for Craig's co-worker Margo. Margo has lymphnoma. She was getting ready to have a bone marrow transplant so we went over to her house on Memorial Day to give her a "survival kit". Last week we found out they had to put off the transplant because her tumors have tripled in size. For now she is going to have to continue with treatment to try to get her into a temporary remission. We are very concerned for her.

Thanks for checking in on us........

Friday, June 5, 2009 7:24 AM CDT

Hi Everyone,

Long time, no update. No news is good news these days. We have been busy with end of the school year activities. My baby is now a Kindergarten graduate! I can hardly believe it. Alex wanted to celebrate by having all of his favorite foods for dinner.......he wanted mash potatoes with gravy, mac and cheese and corn on the cob. I told him he needed a little protein, so we had chicken too!

The new web picture is of Alex at his primary school's art show. Alex created the picture of the flowers, and the picture of the second bunny down is his also. Craig and I think we have an artist in the making with the picture of the flowers!

We have had so much fun over the past couple of months. We take nothing for granted. Four years ago Alex wasn't allowed to eat anything grown in dirt............this year, we went to a local greenhouse where Alex planted a pepper plant, tomato plant, a pumpkin and some maragolds in a huge pot. We are watching it grow every day.

On Tuesday it was "take your pet to school day". I took Buster in to meet Alex's Kindergarten class. It was one of the cutest things I have ever seen!

There were so many times when Alex was going through treatment that I didn't think we would ever get to this point. I know of parents who haven't. So enjoy every moment of your children's Summer vacation. Don't count down the days until school starts again. There are too many parents who are mourning the loss of their child, or praying that their kids will live to see a Summer vacation.

Alex has a clinic appointment on June 16. I wonder what his platelets will be? He has been so active that he is bruised from head-to-toe!

Yesterday was his last day of school and they had a field day. He wore his helmet so that he could participate. The Lord is so good. He provided a friend in Alex's class who wears a helmet along with Alex so that Alex doesn't feel so different. Alex said the best part of yesterday was, and I quote, "no learning"!.

Before I forget......We are going to participating in a fund raiser called Kick-it for Cancer. The website is www.Kick-it.org. We will be forming kick ball teams together on the west side of Cleveland in honor of Alex and his friend Ava. A portion of the proceeds will go to Flashes of Hope -- an organization that takes portraits of pediatric cancer patients. Alex has a couple of these portraits and they are very sweet. Another portion of the proceeds will go to Cure Search -- an organization that does pediatric cancer research. Check out the website! Even if you can't participate here in Cleveland, you can form your own team where ever you are and raise money to Kick-it for Cancer!

Thanks for checking in on us!

Wednesday, April 1, 2009 7:09 AM CDT

Happy Birthday Alex!

Alex got a puppy for his 7th birthday -- his name is Buster. I can't believe that Alex is 7 years old today. He is on Spring Break, so he has the day off of school! Just four years ago we were in the hospital because Alex has spiked a fever and he spent his third birthday in the hospital. We had a party for him a week before his birthday because we knew he would probably have a fever from the chemo on his actual birthday. I remember the doctor encouraging us to have a party for him because we didn't know what the next year would bring and we didn't know if Alex would be here for his fourth birthday.

Craig has taken the day off of work so that we can celebrate with our birthday boy. Alex is having three of his friends over on Friday for a Star Wars themed birthday party and a surprise visit from Darth Vader. One of Alex's babysitters has a Darth Vader costume so I asked him if he would make an appearance at Alex's party.

There is not a day that goes by that I don't thank the Lord for restoring Alex's life. And not a day goes by that I don't think and pray for the families who are still struggling to keep their children alive, or who are struggling to go on with life without their children.

The joy that we feel today is beyond what we could ever express.

Thanks for checking in on us, and as always, thank you for your prayers over the last four years. We could not have survived without them.

Wednesday, March 18, 2009 3:03 PM CDT

Hi Everyone,

First, the good news.....Alex is NED. No Evidence of Disease!! It was so hard waiting for the news. I didn't hear anything official until this afternoon. Some of his lymph nodes and his left lung has some uptake, but we think this is from the virus that he has had over the past couple of weeks.

It was a little touch-and-go yesterday because even after being sedated, he was coughing......though is lungs were clear. Alex has a lot of post-nasal drip from the scaring of his mucus glands. The nurse suctioned him out and we waited and watched for him to settle down so that we could follow through with the scan. We then met with Alex's new doctor who is VERY nice. He said Alex looks great. He is a little concerned about the fact that he has not gained weight in 8-9 months, then today we got his blood test results back and they showed that Alex has some deficiencies. He needs more potasium, protein and calcium in his diet. I met with a nutritionist who was very impressed with the food that Alex eats. We just have to get some more fat into his diet. No doctor has ever said that to me! Can you believe that? He eats a little too healthy!

Seriously, the doctor said we have to watch his weight and growth over the next few years because of long-term chemo side effects.

I am still a little fuzzy-brained from yesterday, so I will write more later.

Thanks for your prayers and thanks for checking in on us.

Thanks for the prayers

Tuesday, March 17, 2009 5:25 PM CDT

Hi Everyone,

Alex had scans today and we met with our new doctor. We have no results yet. I will update the website as soon as we hear something.

Wednesday, February 11, 2009 8:10 AM CST

Hi Everyone,

Well we will not have the dreaded visit to the dentist this week because Alex is sick. He has a virus and an ear infection. He started with it on Saturday and by yesterday had a temp of 101.4. I almost took him to the doc on Monday, but he said he had no pain. When we went in yesterday, the doctor was surprised he didn't complain of pain because his right ear was so infected. I think he has such a high threshold for pain because he has dealt with cancer and the treatment that goes along with it. However, when the doctor asked him why he was there to see her, he said "I have a cold, but I am feeling better today.....but I was EXHAUSTED on Saturday!"

He's missed three days of school this week, but we are hoping to go in tomorrow for the Valentine party. I have to bake cupcakes and make edible fruit centerpieces.

We have learned through this process that there is always something to be thankful for. Yesterday as I was on my way to the pediatrician, I was thanking God it was not the oncologist we were seeing. I was also thanking the Lord that he has taken away the anxiety when I drive and that I can spend quality time in the car with Alex. Craig and I love when we are in the car with Alex and he asks if we "want to chat".

A while back I had mentioned the four year old sister of one of Alex's classmates being treated for cancer. She has to go to Cincinnati Children's next week to have a biopsy on the tumors that have spread to her lungs. Please pray for Ava and her family. Her website address is www.caringbridge.org/visit/avaharb.

Last week a little girl in Florida who was being treated for NB died after receiving platelets contaminated with the strep virus. I remember when Alex received contaminated platelets once. It is very scary that something your child needs to save his life could also threaten his life. A teenager from Virginia named Nick is still fighting NB after four years of treatment. The cancer has spread to his bone marrow again. His website is www.caringbridge.org/vist/francafamily.

These families need our prayers.

I'll keep you updated as much as possible. Thank you so much for checking in on us.

Tuesday, February 3, 2009 8:02 AM CST

Good news......the hearing loss was temporary and caused by fluid. What a relief. Alex's echocardiogram was normal, and the part of the pulminary function test that could be completed was good.

We had an unexpected trip to the audiologist yesterday because one of Alex's hearing aids stopped working again. Thank goodness the audiologist can give him a back-up hearing aid to use while the other one is sent out for repair.

Next week is the dreaded trip to the dentist. We'll have to give him a couple of doses of clotting medication before hand.

I feel so heavy-hearted today. The bank that Craig works for is laying off an additional 5,800 people. Then while I was reading the website of one of the NB kids I follow, they mentioned a friend who had been clear of neuroblastoma for 5 years and has relapsed. So today I will hold Alex a little tighter as I am reminded of how short life is and how thankful I am for him.

Thanks for checking in on us.

Sunday, January 25, 2009 5:00 PM CST

Hi Everyone,

Sorry for the lack of updates, we've been a little busy. The new picture was taken right before Alex's class went on a field trip to see the "Runnaway Bunny" and "Goodnight Moon" at Playhouse Square here in Cleveland. I was appointed class photographer, so I got to accompany the class on their trip. It was wonderful. With all that we have been through, a field trip with Alex's Kindergarten class is like heaven on earth! Before Alex left for school that morning, he said "Mom, I want to sit with my friends on the bus, but you can sit with me at the theater." Needless to say, I didn't sit with him on the bus........I didn't want to cramp his style! :)

Alex has had doctors appointments every week since the beginning of the year. The first one was on January second -- we went to the audiologist. Alex has had a 10-15 decibel drop in his hearing. The ENT says it is one of two things. The hearaing loss could be fluid in his ears and he may need a second set of tubes, or it may be a permanent hearing loss. Alex has an appointment with the ENT and another hearing test scheduled for this Friday.

Alex is now caught up on immunizations -- YEAH!!! It took over a year and a half, but he is done until he is 10 years old!! His immune system is so much better this year. He has missed five days of school and only three of them have been for illness. Last year he missed over 30 days. He'll miss school tomorrow because he has a pulminary function and echocardiogram scheduled. In February he goes to the pediatric dental clinic. The poor child has a mouth full of metal.....and that is just the beginning. He has years and years of dental work coming up. Oh, and scans have been scheduled for March 17.

Every day is such a gift to us. Alex is doing so well. When I think back to four years ago and how we didn't know if the chemo was working......there is so much to be thankful for.

I was watching a documentary on PBS about childhood cancer. When I watch things like that, or a St. Judes program, I realize that we have lived that life. One of the things documented on the PBS special was one family struggling to get back to a normal life. You really never do.....you just find a new normal. We are so thankful for everyday we have together as a family. We know that God has been so merciful to us. However, we never forget for one second the families who are still fighting. I always struggle with being so thankful for what we have , and yet sad for the children who are still suffering through treatment and the familes who have lost their little ones.

We still don't know if Craig is going to have a job or not, but when we look back on what Alex has come through, we can put it into perspective. One day at a time.

Please don't forget to pray for the children and families who are suffering with cancer.

Thanks for checking in on us.

Saturday, December 13, 2008 3:30 PM CST

Hi Everyone,

The new picture is of Alex and the gingerbread house he made at our local library. Last weekend we went on a horse-drawn wagon ride at Lake Farm Park in the FREEZING cold to look at Christmas lights. Alex also made a toy in Santa's workshop while we were there. My friend Amy has "hooked us up" with all these festivities. It's been so much fun to see Alex do "normal" things.

We went to clinic on Thursday and Alex's platelets held steady at 22. (last time they were 24) He looks really good and doesn't have much bruising.

Earlier in the week I got an interesting phone call from Alex's bone marrow transplant doctor, Dr. Weirsma. If you remember, Dr. Villella moved and Dr. Weirsma took his place as our primary doctor. Dr. Weirsma wanted to call us to let us know she is also leaving. Her husband, Alex's radiation doctor, took at job as the head of a cancer clinic in New York state. Dr. Weirsma assured us that Alex is in such a good place. She went on to tell me that the fact that Alex's platelets are in the 20's is "monumental".

It's so hard to see such good doctors leave us, but ultimately, I know I have to remember that Alex is in the Lord's hands. When I think of where we were four years ago and what a grim diagnosis we were given, it is astounding to me that Alex is still here. Christmas has so much more meaning to us because of all we have endured.

Please don't forget to pray for the families who are still suffering. Some are still fighting the battle and two children in the last couple of weeks have lost their battles here on earth.

Love and appreciate your children, they are such a gift from God.

Thanks for checking in on us :) Merry Christmas!

Tuesday, December 2, 2008 7:18 AM CST

Hi Everyone,

LLLLLLOOOOOOOONNNNNNNGGGGGG time, no update. Sorry about that. We have had a lot going on......in a good way.
We are able to get out so much more and we are taking advantage of as much as possible before cold and flu season hit full force!!

Alex is doing really well. He was sick a couple of weeks ago with a low-grade temp, but didn't have to go to the doctor!! :) We still lost a good bit of sleep due to coughing and breathing treatments in the middle of the night, but that is nothing compared to chemo and hospital stays! It was so weird not having to go to the doctor and to be able to treat him at home. He only missed two days of school. Last year Alex was sick every three weeks. This year, he has had only two colds. His immune system is finally kicking in..........wish those platelets would get the hint!! Speaking of which, we are going to clinic on December 11th for a platelet check.

So much has been going on over the past few months. All things to be thankful for. We had Alex's parent/teacher conference a couple of weeks ago. Alex is doing really well in school. His standardized testing scores are awesome. I wouldn't mention this at all, but it is amazing to us that he is doing so well with all that he has endured.

His teachers told us a story that I have to share with all of you. Alex's teacher is Mrs. Michaels, however, he goes to Mrs. Hignett's room for social group and Occupational Therapy. Alex has been taught three methods of self-control to help him when he gets frustrated. Mrs. Hignett felt that Alex would be a good example to one of the other Kindergarten classes, so she had him demostrate the ways to get control of yourself. After he was finished, a little boy raised his hand and asked him what was in his ears. He told a class of 22 children that he had cancer and that the medication ruined his hearing, and now he wears hearing aids to help him hear. Mrs. Hignett said she walked out of the class crying. She said she was so proud of Alex and that she thinks he has a future in public speaking. :) When Mrs. Michaels relayed this story to Craig and I she said she had chills.

We have so much to be thankful for. Saturday marks four years since Alex's diagnosis. We were given such a grim diagnosis. Everyday we hear about more diagnosis, or relapses, or children passing away. God has been truly merciful to us and we never take that for granted. Craig is facing a job loss right now and that is so scary to us because of health insurance issues. We just keep reminding each other of God's faithfulness to us in the past and that we have been through much worse. We also know that God gave us Alex with all of his health needs and that God will provide for those needs.
Please keep us in your prayers. We don't want to have to move Alex from the security of the hospital care that he knows so well and the school system that he is thriving in.

Before I sign off, I wanted to tell you that because last Christmas "Cookies for Kids Cancer" was so successful, there is now a website www.cookiesforkidscancer.org. I believe this will be a permanent website to raise money for childhood cancer research.

Thanks for checking in on us!!

Thursday, October 2, 2008 8:49 AM CDT

Hi All,

Sorry for the lack of updates, we've been busy and I had a headache most of last week so I wasn't on the computer much.

I realized that when I forgot to put Alex's platelet level on the last update! His platelets were a BIG 24!!!! He hasn't been above 22 in a couple of YEARS!!! How thankful are we?? Still far from 150-400, but better than 11!!

The day of the scans were a bit scary -- as per usual. You never know quite what to expect. We know several children who have gone in recently for "routine" scans and the docs find relapse, or worse yet, a whole new cancer. Another parent I know coined the phrase "scanxiety"...that is the perfect word for it.

Alex is such a pro. He knows he can't eat and doesn't even ask. He goes in to the sedation unit like he owns the place and tells them he can't wait to get his sleepy milk. He LOVES the way it makes him "spin".......should we be concerned?? :)

We weren't sure if we would get results right away because Tuesdays are really busy days at clinic. While we were sitting in the waiting room in the PET scan area, Dr. Weirsma came in and said to come up to clinic and she would have results for us right away. Needless to say, we were relieved. We were especially relieved when Dr. Weirsma said that his scans were "crystal clear"....the clearest they have ever been!!

As we were waiting in the clinic waiting room for the scan results, we were talking to another mom who looked really familiar to us. Craig and I thought we knew her from somewhere, but where? This woman's little girl is being treated for a rare form of WILMS tumor and is on her 7th chemo treatment since February. We continued to talk and got onto the subject of the traffic lights around the hospital being out. She told us she lives of of I-480, but has been taking I-90 home. I told her we live off 480.........long story short........her son is in Alex's Kindergarten class!!! I just don't think that it is a coincidence that we met. If you knew how many children go to Alex's school, not to mention the fact that Alex is suppose to be in AM Kindergarten, but was assigned to PM......AND they live very close by to us. The reason Deanna looked so familiar to us is because we saw her at Kindergarten orientation!!

We ended up talking for a while and we found out that Ava (the 3 1/2 year old in treatment) is getting ready for a bone marrow harvest so that she can have a transplant. We remember those days well.........Please pray for this family. Michael(Ava's brother) and Alex have started to become friends. We know what this family is going through. Please pray for them. Ava is in the hospital right now because of a fever.......all the while they are trying to boost her stem cells for harvesting. Boy does that bring back memories. It's exhausting and emotional.

Whoops!! Look at the time!! I need to go get Alex ready for school!! Thanks for checking in on us......

Tuesday, September 16, 2008 7:27 PM CDT

GOOD NEWS EVERYONE!!!

Alex's scans were CLEAR!!!

We are so thankful for the Lord's mercy on us.

We are exhausted from a full day at the hospital.....more later!

Thursday, September 11, 2008 7:38 AM CDT

Hi Everyone,

Alex has finished his antibiotic and seems to be doing well.

Alex is scheduled for scans on September 16th. I'm anticipating that his platelets will be low because he was just ill.

Speaking of platelets....... Because of the low platelets, he has to wear a bike helmet when he has gym. This has been frustrating to Alex. (and rightly so) He hates being the only one in his class wearing a helmet, but we cannot risk him getting a head injury with a platelet level of 16. (reminder - normal level is 150-400)
Really, we would have every reason to not have him in gym at all, but we want Alex to be in as many normal activities as possible.

Mrs. Hignet, the special needs teacher in Alex's class, made him a book about wearing a helmet in gym and the feelings that goe along with those feelings. She made the book because he won't wear his helmet. The rule is no helmet, no gym. However, Mrs. Hignet sits with Alex and his helmet in the gym, just in case he decides that he wants to participate. We have really tried to give Alex the responsibility to make the choice as to whether he participates or not.

Alex's choice??..........the first week of school, he quit
Kindergarten. He came home from school and asked if Mrs. Hignet called to let me know he had quit school. It was so funny......I don't let him see that I think it is funny....but it is funny because he is so matter-of-fact about it. He doesn't throw a fit, he just states the facts.

Last year when I received a call from his teacher with an update, I would have to ask him about it.....this year he asks if I have received a call and then fills me in on the details. YIKES!!

So, Monday Mrs. Hignet told me that before Alex walked out the door to get on the bus, he said "I'm not coming to school tomorrow." She said why? He said "because I am not wearing my helmet." He woke up on Tuesday morning and told me that he was not going to school. We talked and long story short, he went to school. He chose not to wear the helmet. HOWEVER, when he came home he said he had been thinking about it, and he remembers wearing his helmet in the gym during preschool, so he thinks he can wear the helmet this year. We just have to let him go through the process.

Such small issues compared to what other children are going through.......relapses and harsh treatment to kill the cancer.

We are so thankful to be doing homework at home.........I have even be able to volunteer at the school on a regular basis. Three years ago we didn't know if that would be possible.

I'll update the site as soon as we know anything about the scans......thanks for checking in on us.

Monday, August 25, 2008 6:27 PM CDT

Hi Again Everyone......Well, we had a pretty restless night last night. Alex needed breathing treatments a couple of times. He also ended up sitting up in the lazy boy because he developed a cough and a fever.

I took him to the doctor this afternoon and he has a virus/sinus infection. We stopped at CVS on the way home and picked up an antibiotic. Because of the fever, I have to keep him home from school again tomorrow. It's a bummer for him to have to miss school on what was suppose to be his first full week of Kindergarten. I'm just thankful he's not in the hospital.

As we were coming out of the pediatrician's office, I decided to check the messages on our home phone. I normally do not do that, but I had a feeling the audiologist was going to call. Sure enough, they called and said Alex's tie-dyed earmolds were ready to be picked up. All we had to do was walk up the steps and pick up the molds. They are SO COOL!! It looks like he has Gummy-Savers in his ears!! He loves them.

When we got home from the doctor, Alex took little bit of a nap. He kept getting chills so he put a sweatshirt on.......poor little guy. After a rest and some Tylenol, he seems to be doing better.

Thanks for checking on us......

Sunday, August 24, 2008 2:44 PM CDT

Hey Everyone,

I gave up (for now) on figuring out the new photo software, otherwise, there would be no way to show you the Kindergarten pictures!! There are new pictures in the photo album too. In case you didn't notice, I hadn't updated the pictures since last year!

The picture above was taken after Alex got off of the bus on his first day of school. The two girls with him are our neighbors Shelby and Danielle. I believe they are both at least two years older than Alex!! The girls helped to direct Alex across the street after school. It was so cute!

After Kindergarten orientation, we took Alex to the neurologist. While examining him and talking to him about his day at Kindergarten, she asked him what he had for a snack. He looked at her and said......."it was Kindergarten ORIENTATION......there was no snack." That's my son...... Long story short, Alex didn't supress any of the tics he has and the doctor was able to give us a diagnosis. He has tourettes syndrome. Not the Hollywood version. It is actually an anxiety disorder that is not related to the physical treatment, or the cancer. Craig and I were impressed by this doctor because she did not want to medicate Alex. Rather, she explained that 95f all children who have tourettes out-grow it. It takes years sometimes, but eventually it will go away. The doctor also said she commended us for not denying it, understanding it, and not wanting to medicate him. She said some parents want the child medicated so they don't have to deal with the tics.

The tics have been going on for over a year and he has about three. It is hard to explain on the website, but other people, like his Occupational Therapist and his Speech Therapist have asked me about them. I knew it wasn't just something I was imagining, but I also wasn't overly worried about it.

Alex's first day of school was great! I think he is really going to enjoy his teacher. The teacher needed a volunteer to take pictures of the class on the first day, so I got to be in Alex's classroom for a while and check things out!! He was really shy. I think he may have been a little overwhelmed. The school didn't realize his FM system for his hearing-aids needed charged, so he wasn't able to hear the teacher as well. When he got off the bus, he was really happy and said that he had a great day!

Of course, yesterday morning he woke up with a sore throat and has a "barky" cough. I think it may be allergies because he doesn't have a fever. Hopefully that is all it is. It would be a real bummer if he got sick and missed the second day of school.

Do you realize three years ago today we brought him home from the hospital after a 64 day stay and he was enduring radiation? It's hard to believe. So much to be thankful for......

Thanks for checking in on us.

Saturday, August 16, 2008 8:45 AM CDT

Hi Everyone,

Well, hopefully by Alex's first day of school (on Wednesday) I will have figured out how to put an updated picture on the website!! I haven't tried to hard to do that this week because we have been busy.

On Wednesday we went to the ENT and audiologist. Alex's hearing loss is still stable!! YEAH!!! He needed new ear molds for his hearing aids because even his ears have grown! I don't know if I told you, or not, but he decided to have them tie-dyed! He could choose up to three colors. Alex chose red, lime green and purple! He cracks me up. I told him I think that it will look like he has gum in his ears :) I LOVE that he is so accepting of the hearing aids. He told the audiologist that he loves his hearing aids because he hears so much better when he wears them.

Wednesday was an interesting day for us. As we were sitting at the table having breakfast before leaving the house, Alex told me he hates have to go to the doctor all of the time. I told him that I understand......it just plain stinks sometimes. However, I just felt like God was urging me not to let this moment slip by. I went on to tell him that even though it is hard, God is shaping his character and making him more brave and courageous every day. Then I told him that God might put someone in his path that has been sick like him and he will be one of very few people who will understand what this person is going through. Alex then said he hated when he had "that enemy" in his tummy. I looked at the clock and we hurried out the door for his doctor's appointment.

On the way home from the docs, we stopped by Wal-Mart to get a couple of things. We were in line and I was putting out items up on the conveyer belt. Alex then said to me "mommy, why is that little girl wearing a medical mask?" I looked up and right behind me was a little girl wearing a Disney medical mask (exactly like Alex use to have to wear) and her family right next to us in line. I said to Alex...."I don't know, maybe she is sick like you have been." I then explained to the mother that Alex is in remission from cancer. The mom looked relieved. The little girl is about to have a bone marrow transplant. I told the mom that Alex had had a BMT and that my heart was with her and that we would pray for her. After talking for a little bit, we found out all sorts of things. The mother of this little girl had really short hair because her hair was just growing back from her last chemo treatment.....she had had stomach cancer. The little girl's grandmother is going through treatment for breast cancer.

This little girl has been made fun of in school because she has to wear a mask. Alex told her he hated wearing the mask. It was so surreal to see Alex talking to this little girl. He really understood. The woman behind the cash register was looking at all of us with an open mouth. I think she was horrified.......however, she said that she would pray for all of us.

That was SO NOT a coincidence. As we were heading for the parking lot, I said to Alex......what just happened back there was exactly what I was talking to you about this morning. Did you hear that little girl say she had been made fun of? You didn't make fun of her because you understood why she had to wear a mask. God taught us so much in that moment.

There are days that I struggle with my feelings. I think I can understand survivors guilt is. We are not out-of-the-woods, but Alex is doing so well. God has been so gracious to us. Other families are still fighting, or have lost their children to horrible diseases. We try to live each day with gratitude. We have had such a great Summer.....sure we were at the docs a lot, but Alex didn't get a virus ALL SUMMER!!!

Alex starts Kindergarten next week!! That is HUGE for us. We are so excited and happy to have our little guy making such strides.

Thank you for your prayers and for checking in on us.

I'll give you the low-down on Kindergarten next week!

Monday, August 11, 2008 2:21 PM CDT

Hi Everyone,

Before I forget, Alex's scans have been scheduled for September 16.

We just got back from one of four doctor's appointments this week. Alex received two more immunizations. If things continue to go well, he will be caught up with all of his shots by the end of this year!

Alex goes to the ENT and audiologist on Wednesday. We are hoping there continues to be no more hearing loss. He is growing so much that he needs new ear molds for his hearing aids. Alex has decided that he wants to have the molds tie-dyed! The molds in his ears right now are clear. Believe it or not, the hearing aid company does offer the kids the choice of having the molds colored. Some kids choose to have them swirled with multiple colors. I think it looks like you have gum in your ears. We will go with the flow and have the molds tie-dyed. I'm telling you my child is my hero. He takes what could be a difficult situation and makes the most out of it.

We went to a picnic with RB2 families over the weekend. It was nice seeing some of our docs and nurses outside of the hospital.........Not to mention seeing some of the families we haven't seen in a while. Some families are doing well and some are not.

Today we ran into a couple of people we had not seen in a while a Target. It felt so "normal". Sometimes I feel like our life is so weird.........We have the reality of our life and Alex's disease and the kids that aren't doing as well as he is.......But then we are trying to live life and be thankful for how far the Lord has brought us. We also still deal with minor side-effects from his treatment. Alex still has behavioral issues in crowds at times, and he has problems dealing with change.......hence the ticks.

I'm so thankful to be able to go run errands with Alex after his doctor's visits. There was a day when we couldn't do that. Today we went to Target, then to Toys R Us to pick up a birthday present for a party Alex is going to on Friday, and then we went to the grocery store. Those may seem like everyday things to most people, but not to us. I always think about the families who would love to be out and about doing mundane chores.

Please pray for the families who are re-living the nightmare because of relapse. My heart aches for these people everyday......I know that we could so easily be in their place.

Thanks for letting me think out loud today.......

Sunday, July 27, 2008 4:42 AM CDT

Good Morning Everyone,

For those of you who haven't had a chance to read Friday's post, Alex's platelets dropped to 16. He also will be going to a neurologist on August 20 because he has had a couple of headaches coupled with a new tick. "Tick #1" usually happens when he is in a new situation.......for instance, when he starts school in a few weeks. The unknown will cause him to be anxious, so he will touch his chin to both of his shoulders. "Tick #2" is blinking really fast all the time. We really do think it is just the way he copes with things, but the docs would like him checked out. You never know what the side affects of chemo can be. I think the headaches are allergy related.

Oh, and Craig broke his hand, so he has a "big honkin" (another medical term I have picked up) cast on his arm. Never a dull moment.....

The real reason for this update is to ask you to pray for a little boy named Liam. I only know these people through Band of Parents. However, Liam's mother Gretchen headed up the cookie bake sale fund raiser I mentioned on our site, just before Christmas last year. That idea raised hundreds of thousands of dollars for NB research. Liam is four. He will have to face some very harsh rounds of chemo AGAIN. His parents are trying to be brave, but you know they are crushed. It's just one little spot on his right kidney -- where the cancer originated the first time. Let me tell you, it is very rare to relapse in the same spot. It's very scary. Please lift up these people in prayer. They have a very tough road ahead. Liam's mother Gretchen talked about having to be in isolation again because of germs. That is such a concern because you know a cold could be potentially fatal to your child.

On a more positive note, Craig's nephew Gabe will be coming to stay with us this week. Alex is excited because he will have company when we go away for a few days. We are headed off to Olgebay Resort in a couple of days. We haven't been away for a long time, so we are all looking forward to some fun and relaxation.

Thanks for checking in on us and for the prayers for Liam.

Friday, July 25, 2008 7:26 AM CDT

Hi Everyone,

I want to update the picture of Alex on the website so that everyone can see him taking swimming lessons. However, I got new photo software and I need tech support from my husband. Swimming lessons were a HUGE accomplishment for Alex. He was so afraid at first, but he really tried and by the end of the two weeks, he had mastered all that was required. In fact, he earned a starfish patch! :)

Now onto the platelet count.........poor Rhonda.......Alex's new clinic nurse......she was so optimistic thinking Alex's platelets could be in the 30's.....silly rookie. If you remember the platelets were 18 in May......they have dipped down a bit to 16. On the upside, he looks really good. His red cells are just slightly below normal at 11.0 (11.4 is the low end of normal) His white count is 4.6......again, low. (6.0 is low end of normal) I don't think anyone can expect much more, seeing as his bone marrow is all scar tissue.

We walked around and visited with our RB2 nurses and they were all shocked to see how big he is. We are excited to be going to the RB2 family picnic in a couple of weeks. The picnic will give us a chance to see other families we haven't seen in a while and to see docs and nurses that we love.

I don't recall if I had mentioned to you that for the past several months Alex has been blinking kind of weird. Craig and I think it is anxiety related. It seems like it happens a lot when he is in a new situation, however, he's had a few headaches recently. I have been keeping an eye on him and giving the docs all the necessary information. Alex has a couple of other "ticks" that have developed over the past year or so.......couple that with what we are seeing now and we all feel like it's time he be examined. So, we are adding yet another specialist to our list. I have to call a Peds Neurologist today. It could be nothing........it could be a chemo side effect......who knows, but better be safe than sorry.

Lately, whether I am reading or listening to a sermon, I keep hearing the same message. Walk by faith, not by sight. Now that is SO EASY for people to say when they aren't going through a severe trial. However, I have seen many a family, including us, have to put this into practice on a daily basis. Over the past three plus years, we have learned to choose to walk by faith and not by sight. That lesson did not come easy for me, but I'm learning to keep my eyes on God and not our circumstances. I have had people tell me I am strong.....I literally laugh. I've also had people tell me I am weak, oh well, they aren't living what we have lived.

There are two verses in my Bible that I have high-lighted and are daily challenged to live by.

Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."

Philippians 3: 12-14 "Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one think I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."

Some days we are "straining" more than others, but we are pressing on.......Alex is such a miracle to us and we cannot and will not forget that.

Sorry if this seems like a "soap box" entry, but I have felt very challenged lately. Do I share, or not share. I figure I'm just going to put it out there because you never know who it may encourage........and I have a burden to just be real. Some days are really really good and some days we struggle with the trials of life.

Thanks for checking in on us.........

Thursday, July 17, 2008 11:20 AM CDT

Hi Everyone,

Alex did not have clinic today because we had to reschedule. His next platelet check will be on July 24th -- next Thursday.

We've had a good Summer so far. Alex is still doing OT once a week.

I enrolled him in swimming lessons this year......just one session. We are taking things slowly. He's the biggest and oldest child in his class. Alex has been overcoming his fear of water, etc. One of the challenges that he has is that he can't wear his hearing aids in the pool. Sometimes the teacher has to repeat things so that he can hear her. I'll have to post some pictures of him in the pool. It is a HUGE deal that he has overcome his fear of the pool and doesn't go scooters (yes, that is an official medical term) when kids are splashing around him. I think it helps that there are only about 7 kids in the class and that they are all younger than he is.

We went to the Zoo on Tuesday with friends of ours -- the Krogh's. Alex had a really good time with his friend Josh. It's so nice to be out and about.

For the first time in four years, I feel like we are having a normal Summer.

Thanks for checking in on us.....I'll update more later :)

Saturday, June 28, 2008 7:12 PM CDT

Hi Everyone,

I just thought I would let you know we have not fallen off the face of the earth.....we are still here in Cleveland. The new picture is of Alex at his preschool graduation picnic. Can you believe it? Alex is on his way to Kindergarten!

Alex is doing great. Tommorow (June 29th) he will be three years out from transplant -- it is nothing short of a miracle.

We've been busy since Summer started. We still are at the doctor's office or some kind of therapist two to three times some weeks. Alex is doing occupational therapy once a week to keep up with his writing skills, so he won't be behind when he starts school in August. Alex is still catching up on his immunizations. I think he should be up-to-date with his shots at the end of this year.

I have to tell you this story because it was a huge lesson for me..........Alex is getting older and, therefore, understanding more and more about what he has gone through. He knows he has had cancer. One day he saw a picture of himself bald, and he told Craig and I that he felt SO SICK and that he had no energy. WOW! As his parents, when we hear stuff like that coming from him, our hearts ache.

SO, on with my story......School was still in session and Alex was getting dressed in our bathroom. He didn't have a shirt on and he said to me "mom, what is this scar from?" He had never asked me about his scars before. I had kinda dreaded the day he would ask. I told him that was where his medi-port use to be. He then pointed to another scar.....where his broviac use to be. Then, he asked what the "big long scratch" was along his right rib cage. I told him that is where the doctors removed the "enemy in his tummy". He said "oh, the enemy that is called cancer?" I said yep, that's the one. I also told him that those are also reminders of how brave he is. He said "OH" and walked out of the bathroom.

Now I know I could have been happy and thankful that Alex was standing there, but that really made me sad. Why did my child have to get cancer?

After Alex left for school, I was cleaning up the kitchen and listening to my ipod. Steven Curtis Chapman's "Cinderella Edition" has been a favorite of mine. There are three new songs on this edition of the album that are great songs. The last song is called "Beautiful Scars". The words of the chorus are "beautiful scars, beautiful scars, reminders of the wounded love that has carried us this far". Of course, I started crying........because later in the song it talks about "for us he was wounded, for us he was forsaken, our wounded healer suffered to set us free.....see his hands and his feet".

I have not looked at Alex's scars in the same way since. There are now "beautiful scars" to me. Alex is here with us. He is SO energetic. He went to Safety Town this week. He is going to be taking swimming lessons in a couple of weeks. He loves going to school and Sunday school........Last year at this time, he couldn't handle being around his peers. He would totally lose it and sometimes even pound his head on the floor!

Three years ago Alex could hardly walk. We had to coax him to walk down the hallway. He would cry and say "please don't make me do this, I can't" Now we can't stop him from running.

Alex's next clinic appointment/platelet check is July 17th. He's been so active that he is quite bruised......I hope he still has a platelet count!

Thanks for checking in on us......

Tuesday, May 27, 2008 7:30 AM CDT

Hi Everyone,

Again, sorry for the lack of updates........I've been having major computer problems. My old laptop was about to blow up! Problem solved and I am back in business.
I'm not too crazy about the computer. When Craig was in the process of purchasing a new one, he kept explaining to me about the "gigs", etc. I told him explaining that to me is like me explaining a recipe to him......he doesn't care what the ingredients are, he just likes the finished product. All I want is to be able to get my email and make a purchase every now and then.

The new picture is from over the weekend. We rode the subway downtown to visit the Great Lakes Science Center on Saturday afternoon. Alex was SO excited. It was his first subway ride. For our friends in the Washington D.C. area, you would be scared and humored all at the same time with the Cleveland RTA. I know we are. However, Alex kept saying over and over how much fun he was having on the subway. It's the simple things in life that are the most joyful. Seeing Alex so happy and healthy is nothing short of miraculous.

It has been a year since my mother-in-law died suddenly. This time of year always makes me remember what we were doing three years ago. I remember cleaning and packing because the day after Memorial Day we were going to Alex's pre-op appointment, followed by a day of "cleansing", followed by 7 1/2 hours of surgery to remove the deadend tumor. Only by the grace of God have we survived. God has been so good to us and we are thankful for everyday we have with our son.

Please appreciate the time you have with your kids. We hear every week of another child suffering and dying of neuroblastoma. These families would do anything to find a cure........to not watch their children suffer and die.

Craig and I stayed up way too late last night talking about how this experience has forever changed us. We were deeply appreciative of Alex before his illness because his birth was so miraculous and unexpected. We see life in a whole new perspective. Life is short and all we have is today.

I'm looking forward to having Alex home for the Summer. I'm already dreading the Fall.......then I remember.....one day at a time........be thankful for today.

Thanks for checking in on us.........please keep praying for the families who are suffering because of cancer.

Monday, May 19, 2008 7:10 AM CDT

Hi Everyone,

Sorry for the lack of updates. We've been busy. I think we are starting to live somewhat of a normal life these days. We appreciate every single day.

Last night was the first night in over a week that Alex didn't sleep on the Lazy Boy. Poor guy......his allergies have been terrible. To hear him cough you would think he was really sick. He did miss one day of school because he was flirting with a fever -- that means hovering at 99.5. We've been doing breathing treatments, Zyrtec, Nasacort, saline spray and Sudafed. All per the doctors orders -- of course. He is getting hardly any relief.

We have been up a lot in the middle of the night. My sister was telling me that the priest at her church reads the Mother's Beattitudes every year on Mother's Day. She said there was one that read "blessed are the mother's who lose sleep while taking care of sick children at night". Last week, I was blessed. I say that jokingly.......sort of..... It's tiring doing breathing treatments and taking care of a child in the middle of the night, but it PALES in comparison to what we have been through in the past. When I think of what Alex went through two and three years ago, a little thing like a breathing treatment is nothing. I am blessed to be taking care of Alex.

In the past two weeks three children have died from "the beast". There are tributes on www.bandofparents.org. Please take a moment and look at them. Please pray for their parents and siblings. Please be thankful if you have healthy, active children.

We are thankful for each day that we have with Alex. We try not to give into the fear that could come each day if we allowed it to. We know that we are not in control.

All we can do is appreciate what God has given us today. Alex is a joy and a gift to us.

Thanks for checking in on us.........

Monday, May 5, 2008 6:04 PM CDT

Hey Everyone.......

Quick update........we spent most of the afternoon at clinic. Alex did GREAT with the blood draw in the lab! He is a pro......he was even joking around while the tech stuck him with the needle. Buddy the RBC mascot puppet came and sat with Alex.

Platelets dropped to 18. I was REALLY trying to be positive and guessed they shot to the 30's!! WRONG! Actually, it's not really that surprising given the fact that Alex is just getting over a nasty case of bronchitis and was on a big dose of antibiotic.

Dr. Villella was very pleased with the way Alex looks. He hardly has any bruising.

Today was such a bitter-sweet day for us. We had to say goodbye to our Dr. Villella. We bought him a train tie clip so that he would remember Alex. Of course, I cried and Dr. Villella hugged me and told me that he was going to start crying if I didn't stop crying. Craig took the day off to come with us so that he could say goodbye too. That was really hard. We consider Dr. Villella to be a gift from God to us. He has taken such good care of not only Alex, but us as a family.

I'm a little tired, so I'm gonna go now......thanks for checking in on us.

Friday, May 2, 2008 8:13 AM CDT

Hi Everyone,

Alex went to school everyday this week. He is still coughing at times, but sounds MUCH better. He won't be going to school on Monday because we have a clinic appointment. Because Alex is older now and doesn't have the port, he won't have his blood draw done by his peds nurse anymore. When we check in at clinic, we will be going straight to the lab for a blood check. I'll start preparing him this weekend by casually mentioning the change. I'm not looking for really high platelet levels since he has been so sick, but you never know.

I think Spring is finally entering Cleveland. Since Alex isn't allowed to play soccer, t-ball, etc. (those pesky platelets) We decided to give him some other options. We bought him a set of Jr. golf clubs this week. Alex and Craig hit the driving range for the first time last night. He told me that he "whacked the ball really far" and that "he won". I think we are going to sign him up for lessons this summer. Craig is SO disappointed that Alex chose golf because this means he will have to get out on the course more.......poor guy.........

Next Friday Alex is going to Rainbow Rehab to be evaluated by the Occupational Therapist. He'll be doing OT once a week over the summer to try to correct the mid-line crossing. He needs to work on keeping the pencil in one hand while he writes. Did I tell you that Alex is going to be mainstreamed for part of the day in kindergarten next year? He'll be with an aide for Math and Language arts because of the OT situation. We want to give him extra time to finish his work so that he doesn't get frustrated. He'll be with 5 or 6 other students during that time. I think transitioning him into a large group of children slowly is definately the way to go. He has made such strides being in a group of children. Everyone is really happy and excited about how far he has come over the school year. We'll keep him involved in group activities over the Summer.

He is starting to recognize words, and he's spelling out words like a mad-man. It really is exciting and a miracle that we do not take lightly.

We're going bowling tonight with several other families from our church. Alex LOVES to bowl.....you should see his "technique". Sometimes he'll approach the lane with his elbow really high and then he just lets the ball go. Other times, he turns around and throws the ball backwards under his legs and then laughs at himself. I admire Alex.....nothing gets him down and he has the ability to laugh at himself.

Please keep the NB families in your prayers. My heart aches for those who are grieving and still fighting the battle right now. We know all to well that it could be us.

Thanks for checking in on us......

Friday, April 25, 2008 8:07 AM CDT

Hi Everyone,

Alex has had a rough week, especially at night. Poor guy, he has slept sitting up on the Lazy Boy since Sunday night. Nothing is helping his cough, but at least it is loose and his lungs are clear. As frustrating as it is to see him sick again, I am thankful he is home with me and only battling bronchitis.

Sara Mae's mom called from the hospital two days ago. Sara Mae has been battling a cough for three months. She is having all kinds of tests done this week.

My heart is heavy today. A little boy name Austin Melgar has passed away. He had battled neuroblastoma, however when he died, there was no cancer in his body. He has been in a coma over the past few weeks. Right now, I think that the cause of his death may have something to do with side effects from his treatment. His parents did everything possible. One thing that his father said on their website the other night was that he knew that God did not make a mistake when he put their family together.

There is a song we sing at church that has been resinating in my mind this week......the first line says "I am not skilled to understand, what God has willed what God has planned, I only know by his right hand stands one who is my Savior."

I really don't understand, and I am starting to understand that that is ok. I just have to surrender to God everything everyday. We are not in control. There was a time in this process that I was not at peace with that. God has really changed my heart. Surrendering Alex everyday can still be a struggle. I'm selfish, I want him here with me.......to be his mom.......to take care of him.....to love him.

As I watch and pray for other children and families in similiar situations as us, it puts everything else into perspective. There is still the temptation to struggle over things like the future of Craig's job..........but then I remember God has spared our son.........he'll provide.

Thanks for letting me ramble on.........Please keep praying for the parents of the children who have passed away and for the children who continue to battle this horrible disease.

Tuesday, April 22, 2008 1:36 PM CDT

Hey Everyone,

Alex had about two days without a cough. Last night he woke up and we had to give him a breathing treatment. I told Craig that I thought he probably had bronchitis. His allergies are really bad right now. Sure enough, at 3 a.m. he had a fever of 100.1, so I knew something was brewing.

I called the pediatrician at 9 a.m. and we were able to be seen at 10 a.m. Just call me Doctor Mom.......Alex has bronchitis. He'll be on antibiotics for ten days. We've had to go the the doctor's office three times within the last 10 days. This is our first sick visit, so that's good. I feel like I could drive there with my eyes closed!

I'm just thankful that he's not doing chemo. We know of so many children who are still battling their diseases with chemo or antibody treatment. Please continue to pray for those children.

Alex wants me to sit and snuggle with him..........thanks for checking in on us.

Monday, April 14, 2008 6:51 AM CDT

Hi Everyone,

Alex only missed one day of school last week. He never did get a fever. His immune system must finally be recovering! He is still coughing a good bit at night, however, I didn't have to give him a breathing treatment in the middle of the night last night. I actually took him over to the pediatrician on Friday to make sure his lungs were clear -- they were.

Alex had a hearing test and ENT check up on Friday also. His hearing loss has stabilized. We are so thankful, not to mention relieved! Dr. Sprecher wants to see Alex in August before school starts and then Alex won't have to be seen for a whole year!!

I want to tell you about Alex's birthday party at school. Craig took the day off. We loaded up the video camera, the digital camera and cupcakes and headed down to the school. It was so much fun. Alex's teachers are so sweet. They have a birthday party for each child in the class. The birthday child gets sung to and then they get to choose some games to play. Alex chose disco limbo and muscial chairs.

It was truly amazing to see how far Alex has come socially. He use to get so frustrated when playing games, or participating in group activities. During musical chairs when he didn't get a seat, he just walked over and sat down with the rest of the children who had gotten out. No pounding his head on the floor, no yelling shut up, nothing.......In fact, he was still smiling!!!

Also, after church yesterday, two women came up to us and told us how well bahaved Alex was. He has come such a long way.

We really have so much to be thankful for. We appreciate every day we have with Alex. When Alex does challenge me, I'm quick to remind myself of when he could hardly walk after his bone marrow transplant.

Please don't forget to pray for the children who are still fighting this horrible disease. Pray for the nurses and doctors who take care of them, they are such precious people.

Thanks for checking on us.......

Monday, April 7, 2008 10:22 AM CDT

Hi Everyone,

Quick update today. Alex is home from school sick. We went to my sister's house in Pennsylvania to celebrate his birthday this weekend. When we asked Alex what he wanted to do for his birthday, he said he wanted to go to Aunt Sue's for a party.

On the way to Pennsylvania Friday night, he started sneezing. By Saturday his nose was all stuffy and he was coughing. He still had a great time!!

He doesn't have a fever -- YEAH!! However, we were up very early this morning doing a breathing treatment, etc. Needless to say, that is why he is home from school today.

Thanks for checking in on us....

Monday, March 31, 2008 3:21 PM CDT

Hi Everyone,

Sorry about the lack of updates -- we've been a little busy.

Easter was special this year. It was the first time in four years that the three of us were able to go to church as family on Easter Sunday.

Alex was off last week on Spring Break. It was great. We didn't go anywhere. Craig took a couple of days off last week and he has taken a couple of days off this week to do some much needed work around the house. We are three years behind!! We are just so thankful to be able to spend time together as a family.

Alex has off school tommorow because it is a district late start day. The afternoon kindergarten and preschool students don't have school. Tomorrow is also Alex's 6th birthday and he doesn't have to go to school!!! We are going out to lunch and then bowling!! Did I say Alex doesn't have school tomorrow???

Craig and I went down to Alex's classroom today and celebrated with cupcakes and disco limbo and musical chairs!! It was nothing short of a miracle. Craig and I were both trying not to cry -- we were smiling the entire time. We looked like the paparazzi!!! Craig had the video camera and I had my digital camera.

We are so thankful that Alex is doing so well. We know others who are not. One little boy is six years old and in a coma. All indications are that it isn't the disease, but the treatment that is causing this horrible situation. Please pray for him, his name is Austin.

Tonight after Alex goes to sleep, I'll put birthday balloons in his room. I've done that every year since his first birthday. I love that he is surprised by the balloons every year. We take nothing for granted. We really do appreciate every day that God gives us with Alex.

Thanks for checking in on us.........

Monday, March 17, 2008 7:42 PM CDT

Hey All,

Last week was good and a little crazy.

First, the scans. Scans are always somewhat emotional. We had had a long day at the hospital, so we were tired. Even when we get good news, because of the exhaustion there is a delay of reaction. When the good news came we were so thankful, but kind of dazed. God has truly been merciful to us in sparing Alex's life.

Second, our precious Dr. Villella is leaving us. He is moving to Virginia. He said his kids are growing and he wants to spend more time with them. Good for him.....he gets it. We are going to miss him SO MUCH. He has been so good to our family. We really appreciate him and consider him to be a gift from God to us during a very difficult time in our life.

THEN, it was in the news that National City (the bank Craig works for) may be up for sale. Of course, there is no comment at this time. Craig and I have been through this before and know we just have to wait and see.

The Lord has seen us through so much over the past three years that we know he has everything under control.

I'll keep ya posted......thanks for checking in on us....

Monday, March 10, 2008 7:07 PM CDT

Hi Everyone!

We received preliminary results of Alex's scans on our way home from the hospital......

ALEX IS STILL CANCER FREE!!!

Thank you all for your prayers. God has been so merciful and good to us.

Words cannot express how relieved and happy we are right now.

Friday, March 7, 2008 7:44 AM CST

Hey Everyone,

We are bracing ourselves for yet another pounding of snow here in Cleveland. We are expecting 7-14 inches. We went to the store last night and stocked up on our hot chocolate supplies!!

I think Alex is getting better. He still has a cough, but I've been giving him Sudafed to try to dry the yuckies up. ("Yuckies" is not an official medical term) Because of the major ice storms in our area, we had another snow day this week. That is a record four days for our school district. Snow days are rare in our district. When Cleveland gets snow we just plow and keep going. Otherwise, nothing would get done from December until May!

As you can see from the picture, Alex got to go to the fire station.

Please keep us in your prayers......we have "pre-scan jitters". Please pray that the scans will not be put off because of his illness.

Alex's first appointment is at 8:30 a.m. on Monday morning and the last appointment is at 4:00 p.m., so it will be a LONG day for all involved.

I'll let you know as soon as I hear anything.

Monday, March 3, 2008 7:34 AM CST

Hi Everyone,

Well, it has been about two and a half weeks since Alex ended the antibiotic from his sinus infection. He is now sick again. He's been running a low-grade temp since yesterday and has had to have breathing treatments because of his cough. This virus doesn't seem too bad, maybe his body is fighting it off.

Please pray that he will get over it quickly. Scans are a week from today and if he has any breathing issues, the docs won't be able to sedate him. Also, he is so excited about his field trip to the fire station on Thursday. I would hate it if he had to miss it.

Thanks for checking in on us......

Sunday, February 24, 2008 7:36 PM CST

Hi Everyone,

We have a date for the scans -- March 10. Alex is scheduled for an EKG, ECHO, pulmonary function, kidney function, CT and last but not least a PET scan. We are so happy that his PNP was able to schedule the tests all in one day. It will be a long day, but it's always best to get it done and over with. Oh yes, and we will squeeze in a visit to clinic too! We are anxious to find out where the platelets are. When Alex was in the hospital back in January, they had dived downward to 10. I think we are expecting good news as he is not bruised.

Here's a classic Alex story.......On Thursday afternoon I received a call from Alex's Preschool teacher Mrs. Matthews. Alex was on the bus on the way home. Mrs. Matthews called to inform me that my son had quit preschool. She was laughing. I braced myself. She went on to tell me about Alex's fettish with plastic cups. At snack time, they drink out of little plastic cups. Alex has NEVER had a drink with his snack at school because he doesn't like to drink out of a plastic cup, or eat with plastic utencils. Don't ask me why.......I have NO IDEA. Anywho -- some of his friends were asking him why he won't take a drink from a plastic cup and he told them he only drinks from his glass cow cup at home. He even told them how there use to be twelve until he broke one, and now there are only eleven. Mrs. Matthews asked him what he does when we go out to eat and he said he drinks from a straw. So, she offered him a straw -- he still said no. Now, some of the other students were asking for a straw, but my son DOES NOT cave into peer pressure :)

Mrs. Matthews then asked him if maybe the problem was that he didn't want to poor his own drink. He fessed up and said that yes, that was part of the problem. As part of snack time, they pass around a measuring cup full of juice, or milk.......they pour some for themselves and then ask their neighbor if they would like some......the reply is suppose to be "yes please", or "no thank you". Mrs. Matthews explained to Alex that part of the reason he comes to school is to learn things like pouring his own drink. He said he didn't want to make a mess. She said don't worry about it, they would clean it up if he made a mess. Mrs. Matthews brought a measuring cup of juice over to the table and Alex made two fists and said he wasn't going to pour. Mrs. Matthews, very kindly, put her hands over his and poured the juice. THAT is when my son stood up and proclaimed that he was quitting preschool.

I guarantee that at some point this week Alex will pour his own drink, and dare I say, drink out of a plastic cup.

On Friday, I had to go down to the school to teach Mrs. Matthews how to operate Alex's hearing aids. Alex's hearing aids were getting moisture in them and making noise, so he was turning them off during school. Alex doesn't go to school on Fridays, but he had to come with me to teach Mrs. Matthews about the hearing aids. Apparently he forgot that he quit preschool because he walked right into the classroom and was excited to see that Mrs. Matthews had been preparing for this weeks lessons.

I have to laugh at things like that because they are so trivial. He's not getting chemo and throwing up, he's just quitting preschool. Alex didn't even throw a fit, he just got a little frustrated. He has come such a long way. I'm so thankful that the Lord gave Alex a teacher with a good sense of humor and patience.

Have I mentioned that he will be getting some Occupational Therapy? He needs some help with his writing skills and holding a pencil correctly. Again, he is being monitored daily and the school system is wonderful. Something more to be thankful for.

Thanks for checking in on us.........

Saturday, February 9, 2008 2:23 PM CST

Hi Everyone,

This week was a little busy. Tuesday night I had a meeting at Alex's school regarding kindergarten registration. I haven't gotten use to the idea of preschool and we are already starting the plan for next year!!

We still have no date for the scans in March....I'll let you know as soon as we hear something.

I took Alex to the doctor yesterday for another round of immunizations........it didn't happen. Why?? Alex has a sinus infection. He was well for about 12 days. His pediatrician thought he should go on an antibiotic, but was hesitant. I asked her if she wanted my opinion and she said yes. The stuff coming out his nose was not clear and I know it was just an indication of worse things to come. As much as I hate the antibiotics, I was afraid to risk letting him ride over the weekend. He has all the symptoms of a nasty sinus infection........underneath his eyes are really dark and he had been complaining of a headache too. So far he has no fever -- YEAH!

We'll play it by ear as to whether he goes to school on Monday. I want him to be well for his Valentine party on Thursday. I am excited that I get to make the cookies for the party! We've purchased "Cars the Movie" valentines.

On Thursday Alex's class went to the post office for a field trip. It was too cute!! They had made Valentines for their parents. Each of the children got up on a stool and asked the clerk if the may please buy a stamp. They all lined up at the mailbox and, one by one, mailed their valentines. You have no idea how thankful I am for these moments.

Please remember to pray for the children who suffer with nueroblastoma. We heard about one death this week and several relapses. One guy had been in remission for 13 years. Nueroblastoma is a wicked, wicked disease.

Thanks for checking in on us..........

Tuesday, January 29, 2008 6:51 AM CST

Hi Everyone,

Alex was able to return to school yesterday. He is full of energy and feeling much better. I wish I could say the same for his parents!

I don't have too much more to report. We are waiting to find out when in March Alex will have his scans.

Meanwhile, I am trying to catch up on household chores that have gone by the wayside for way too long!

Thanks for checking in on us........

Sunday, January 20, 2008 10:03 AM CST

Hi Everyone,

Well, no news is not always good news. We spent the remainder of the week in the hospital. Alex was on oxygen most of the day on Wednesday. We tried "nursing" him at home and then taking him to the pediatrician. The pediatrician gave him a breathing treatment and then asked if she could call Dr. Villella. Alex was really sick.
It was decided that we should go to clinic.

We got to RB&C and they put us in an exam room with oxygen hook-ups. Then, everyone started coming in with gowns, masks and gloves. They told Craig and I we should wear a mask too. Okay, this has never happened before......I was thinking this can't be good, but don't borrow trouble. Alex's cough was so bad. Couple that with the fact that he has just started being immunized and the conclusion was that perhaps he had pertusis (whooping cough). I stepped out of the room to use the restroom and was stopped by Alex's nurse who introduced me to one of the infectious disease doctors. Again, I'm thinking, don't panic Barb, they just think your family has the cooties. By now we know that Alex's immune system is still fragile, (but not as fragile as before) and he is being exposed to a lot more germs because of attending preschool.

We had a steady flow of nurses and doctors coming in and out of the room doing all kinds of tests, swabs and cultures. There was talk of informing the health department........now we know that they think we have the cooties. There was talk of Craig and I possibly needing treatment. God really carries us through these times. Even though we are worried about Alex being sick, we know to remain calm. It's still a reminder of how life is so fleeting.

One of the docs came in the room and told us what we had already known -- we were staying at the hospital. On the way to our "isolation tank", we had to stop off at radiology for a chest x-ray. They made Craig and I put on a gown to go with our masks. Craig said he felt like a freak from a sci-fi flick......I told him to relax, I thought we looked "official". We don't even need hospital transport anymore, they just send us on our way.

When all was said and done, the cultures came back positive for RSV and the x-ray showed what they refer to as walking pneumonia.

I'm not gonna lie to you........we were discouraged this week. We want to live life, but we feel like we are still in the holding tank. Alex was released from the hospital Friday morning and on Saturday morning I was at the docs again for a whopping sinus infection.

Thank the Lord Alex isn't getting chemo and he is still cancer free, but we are SO TIRED of doctors offices.
I keep reading in Streams in the Desert that God often makes us wait and keeps testing us to form our character. We just have to keep perservering.

Alex missed preschool all of last week. Until his cough clears up, he will continue to miss school.

A couple of our RB2 nurses stopped by for a visit (Hi Steph!). It was so good to see them. Alex's transplant doctor was the attending, so we got to see her too. The first words out of everyone's mouth was "he's gotten so BIG!" Steph told us we didn't know how good it was for her to see him. That was encouraging for us to hear too. It reminds us of God's goodness and mercy even when things are hard and exhausting.

Thanks for checking in on us.......

Monday, January 14, 2008 3:10 PM CST

Hi Everyone,

We had a bit of a bad weekend. Alex got the flu, vomiting and all.......and on top of that has another cold. We know that three kids in his class were out sick with the flu last week, so we were not surprised that he is ill too. It's always good to know the source -- it saves a lot of worry. However, because of the symptoms that accompany the flu, Alex ended up bleeding. On Saturday night, Alex had to go potty and it was all bloody. No common illness is common for him.

Alex also ended up with a fever. We were able to stay at home and give him Amicar, but the nurse called us this morning and said that Dr. Villella wanted to see Alex due to the fact that he had been bleeding.

Alex's platelets have dropped from 21 to 7. I would be lying to you if I said we are not disappointed. Dr. Villella decided not to give Alex a platelet transfusion. The doctor also told me that the platelet boosing drug that we have been wanting for Alex has been approved by the FDA and will be out for sure in March.

The good news is that there his red cell count was good which indicates that there was no bleeding.

We are going to try to hold off having to go to clinic until March when Alex is scheduled for scans........we'll see!!

Thanks for checking in on us..........

Friday, January 4, 2008 7:29 AM CST

Happy New Year Everyone!

I haven't updated in a while because things have been a little crazy. To begin with, Alex and I never quite got over the illness that started on the sixth of December. In fact, it got worse and then we shared it with Craig. Craig and I were at the doctor's office the Saturday before Christmas. We came home with a antibiotics, inhaler and nose spray. Then, poor Alex woke up on Christmas Eve morning with a low-grade fever. I called clinic because our pediatrician wasn't available. Doctor Mom was confident of Alex's diagnosis, so the doc called in antibiotic for him too! It all started out as a virus where it felt like we were swallowing broken glass.....it then progressed to the point where we needed an antibiotic to knock it out of our systems.

It was so disappointing to not be able to go to church on Christmas Eve. We were looking forward to that so much, seeing as we haven't been able to to that in years.

Alex did not let being ill get in the way of having fun on Christmas. He was so excited and that got Craig and I out of the dumpers and feeling thankful. We were thankful that we were not in the hospital. Thankful that our son who was given that 20% chance is alive and well. We were together in a warm house with warm food to eat.

Here's a funny story.......We were at CVS picking up our prescriptions and Alex found a pack of three pieces of coal marked "you've been naughty". He said he needed to buy the coal.....because if he bought himself coal, Santa wouldn't be able to bring him any! He's always thinking!!

My sister Sue, brother-in-law Mike and nephew Ben came out to visit the day after Christmas. We had a nice couple of days with them. I think Alex wore them out!!

We had a nice New Years. It was just the three of us. I bought some cheese and crackers,sparkling grape juice, and of course, hats. You would have thought we were in Times Square! Alex kept running around saying that it was the best New Years party ever. Obviously, the child has low expectations!! All kidding aside, it was a good New Years for us. Looking back three years ago, we were waking up every 2 hours to fill the NG bag so that Alex was getting continuous feeds. We were sleeping on an air mattress in the family room, Alex was loosing his hair and we were doing everything to minimize his pain. God has been so faithful to us.

I took Alex back to the audiologist and ENT on January second. His hearing test went well. The hearing loss he was experiencing was due, for the most part, to the fluid build up in his ears. The tubes seem to have done the trick. However, the fact that even after the fluid disapated and Alex didn't complain about the volume being too load on his hearing aids does indicate there has probably been a little more hearing loss. Nothing too drastic, but we don't want to see anymore hearing loss occur. Alex is doing great in speech therapy, even though he has both hearing loss AND four missing front teeth!!

That's about all that is going on with us! Thanks for checking in.....

Monday, December 17, 2007 11:35 AM CST

Hi Everyone,

Alex is still complaining of a sore throat, but is doing much better. I took him to the pediatrician on Friday to get another dose of his immunizations. He did great. The child is a real trooper! Santa was in the lobby of the doctors office, so we stopped and had donuts with Santa.

We got several inches of snow yesterday here in Cleveland! Did anyone see the Browns/Bills game?? It was crazy!! They played in a blizzard!!

My cousin's wife emailed me over the weekend to tell me of a person she knows who just lost her son to neuroblastoma last month. She said the mom was shocked to hear that she even knew what neuroblastoma was. Katrina was telling me that hearing of this child passing away reminded her of how far Alex has come.

Craig, Alex and I ran into Addison's mom at Panera Bread last week. Addison died a few month ago.

My heart aches for these mothers. I know what survivors guilt is. Yet, God has seen it fit to spare Alex's life. I have to be thankful for that. Alex brings us such joy......even when he is throwing a fit in Target!!

As I was driving to the post office today, I was thanking the Lord for how he has kept me going through Alex's illness. There were times that I would get behind the wheel of the car and just fall apart. That is where it hit me. I've struggled and I still struggle at times, but God is faithful. God gives me the strength to take care of my family by going to the grocery store, the post office, etc.

I was thanking God for Alex getting on the bus, bundled up, looking like the Michelin Tire Man. I stand at the bus stop while he is getting buckled into his seat, and every day he smiles and waves happily out the window at me. How far the Lord has brought us.

We still have our struggles, but who doesn't????? We take nothing for granted, especially this time of year. Not just because it is Christmas, but because we remember where we were three years ago.

Thanks for checking on us.......

Thursday, December 13, 2007 8:33 AM CST

Hi Everyone,

I haven't updated in a while because Alex and I have had a virus that just won't go away. He has missed a lot of school over the past few weeks. The illness started early last week and is still hanging on. Alex has been up in the middle of the night every night since last Thursday. We took him to the pediatrician on Saturday morning to make sure he didn't have strep -- the strep test was negative. I waited until Tuesday to go to the doc and my culture was negative too. The sore throat is really bad, I'm suprised it's not strep. Alex was exposed to both strep and chicken pox last week. So far, so good, he hasn't broken out. He's scheduled to go to the pediatrician tomorrow for more immunizations. At this point he is considered almost immuno-normal. It's hard to beleve since he's had every virus that has been in his classroom. We are still hit and miss with church and school because of sickness. It's so much easier handling his illnesses now that the mediport is out. He doesn't seem to break out in fevers as much either.

Alex continues to be happy and he looks very healthy. Craig and I keep reflecting back to where we were three years ago. Alex had just ended his first round of chemo and our heads were spinning. If you would have told us that three years from now Alex would be happy, energetic and in school, we would have been doubtful. Three years ago we were told Alex had a 20% chance of surviving, yet here we are.

We had a great appreciation for Alex before his illness because I had had two miscarriages and his birth was nothing short of miraculous to us. Everything is even more precious to us, like sitting at the kitchen table and playing games, or watching him play in the snow bring us such joy. God has been so good to us. We have learned some very valuable lessons through this trial. We'll never be the same. You never know what a day will bring, but God promises never to leave us, nor forsake us. There have been times when it was so hard for me to not just believe in God, but just believe God. Like so many parents who have to watch their children suffer through cancer and the horrible treatment, we have felt alone and afraid.

I know that I have said this many times before, but we could not have survived without the prayers of so many people. We are truly rejoicing for God's faithfulness and Alex's health.

Thanks for checking in on us..............

Tuesday, December 4, 2007 7:32 AM CST

Hi Everyone,

Drum roll please............Alex's platelets are a BIG 19!!! We were all cheering and excited!! Dr. Villella couldn't believe how good Alex looks. We are now on an every other month schedule for clinic visits. Getting this good news at this moment in time is amazing to us. It was three years ago this week (Dec. 6, 2004) that Alex was diagnosed with Stage IV High Risk Neuroblastoma. We were given a 20-40% chance of Alex surviving. He was in the very last stages of the disease. No bone marrow was detected -- his marrow had been taken over by tumors. He was dying.

It has not been an easy road -- we have had some dark days. Our faith has been tested and stretched beyond what we thought was possible, but God has been so very gracious and faithful.

Alex is awake and I need to get him ready for school.

Thank you for your faithful prayers over the past three years. The prayers of so many people has been what has sustained us.

Please pray for Alex's ears. His right ear still has blood in it that is blocking the tube. Dr. Villella didn't want to touch his ear yesterday. We are hoping that the dried blood goes away on its own so that the tube can start to work.

Thanks for checking in on us........

Friday, November 30, 2007 6:21 PM CST

Hi Everyone,

The tubes are in.........Alex was not happy to see that he had to change into a hospital gown. As he has gotten older, he resists hospital beds and gowns. When we stay at the hospital, he sleeps on the sofa in the room.

Alex looked a little scared when they took him back to the OR and we went the opposite way. That was the first time he was fully awake going into the OR. I explained to him that todays procedure was different than the other things he has experienced.........NO NEEDLE POKES. I told him that he would breathe into a mask like the one we use when he gets a breathing treatment at home.

The procedure only took about 15 minutes. When we went back to recovery, he took a minute to wake up. He looked up at Craig and yelled......."Daddy, I like the sleep gas and things went great!!"

Alex did experience some bleeding in his right ear.....it bleeds like a nose bleed. Those pesky platelets!!

We have clinic on Monday, so we'll see what those numbers are.

Craig and I have been talking about the many things that we are thankful for regarding Alex's care. I'll have to go into more detail next week.

OH!! Before I forget......for those of you who shop on-line, if you register with igive.com, retailers like Macy's, Best Buy, Barnes and Noble, etc., will donate procedes of the sale to Band of Parents for NB research!!

Thanks for checking in on us......I'll keep ya posted.

Tuesday, November 27, 2007 7:43 AM CST

Hi Everyone,

The new picture on the website is from Alex's Thanksgiving Feast at school. Don't you love the turkey hat and missing teeth?!!

We celebrated Thanksgiving in Virginia with Craig's family this year. It was the first time in three years that we traveled. It's sad to say, but it wasn't without illness. Alex woke up on Sunday morning with a fever of 102.7. I called clinic, and because he doesn't have the central line anymore, we were able to give him some Tylenol. The doc asked what route we took home in case we needed to make a hospital stop, but thank God we didn't.

He woke up yesterday with a fever of 101.9, so I called his pediatrician and they did a throat culture, etc. Turns out he has another virus. His ears still have fluid in them and his left ear was full of puss.....eeewwwww! Alex was actually complaining of his throat being sore. If he complains, he's in pain. Long story short, he's on antibiotics.

He's not very happy about having to miss school. Mrs. Matthews has created a grocery store called "Matthews Market" and it was to offically be opened yesterday. The class has contributed empty boxes of things we eat at home, so that they have groceries to buy. Last week Alex was emptying boxes from the freezer and the pantry to take in to school. We now have popcicles scattered about in the freezer :)........but "Matthews Market" has a box of popcicles to purchase!! I'm so thankful for moments like these.

While we were in Virginia, Alex got to go see the Space Shuttle at the Air and Space Museum near Dulles Airport. He was so excited!

Alex gets the tubes put in his ears on Friday. Hopefully this will be the cure for the fluid build-up in his ears. We stopped in at the audiologist yesterday to pick up his new ear molds. Their office is in the same building as the pediatrician. Alex has grown so much over the past year that his ear molds are almost twice the size of the original ones!! The ear mold is the piece of the hearing aid that fits inside of his ear. Anywho, the audiologist said that she'll do another hearing test after the tubes are put in so that we can get a true sense of whether or not Alex has experienced more hearing loss, or if it was just the fluid in his ears causing the downward slope in his hearing. I'll keep you posted.

Thanks for checking in on us.

Monday, November 19, 2007 12:06 AM CST

Hi Everyone,

A little update on the Cookie front!!

I received an email saying that they would like to have all cookie orders in by NOVEMBER 30. They are actually doing the baking starting on December 3. The website address is www.cookiesforkidscancer.org

Hopefully the word will get out.

Alex is doing well. We have a Thanksgiving Feast tomorrow at school. I'll try to put a picture up!

Thanks for checking in on us.

Thursday, November 15, 2007 10:28 AM CST

UPDATE FROM YESTERDAY:

Dr. Sprecher's office just called -- he has had a family emergency and can't place Alex's tubes tomorrow. They have rescheduled the procedure for November 30.

Have a Happy Thanksgiving!!

Wednesday, November 14, 2007 3:15 PM CST

Hi Everyone,

We have had a busy day today. I took Alex to the ENT and Audiologist today. He has experienced more hearig loss in his left ear. The doctor thinks it may be two-fold. He has had fluid in his ears for over a year. We've tried to correct the problem with meds, but it isn't working. Dr. Sprecher has decided that he wants Alex to have tubes put in his ears ASAP. So on Friday Alex will get tubes put in his ears. Easy fix compared to chemo.

Ellen, his audiologist, fine-tuned the hearing aids and turned the volume up. Alex noticed a difference right away. He said "I can hear better".

I asked his teacher if she has noticed a difference in his hearing with the FM transmitter. She said she feels he hears ok with it, but he is talking louder.

As Alex was being examined by the doctor, Alex asked the doctor to hurry because he had a field trip at school today. He also told the doctor that he can't have the tubes put in on Friday because his friend Nicholas is coming over. Dr. Sprecher assured him that he could still have his friend over.

His field trip was to the grocery store. His class is reading "Stone Soup", so they shopped for the ingredients today. I'm telling you, I was in heaven. I love field trips!! Next week I get to go into class for the Thanksgiving Feast and we are going to have stone soup!!

Thanks for checking in on us......I'll keep you posted about Friday.

Saturday, November 10, 2007 2:18 PM CST

Hi Everyone,

Alex is doing very well. He has been given an iron will!! He went to school on Thursday like nothing ever happened. He walked out to the bus stop and greeted his friends with a big smile -- opened his mouth -- and said "LOOK AT MY NEW METAL TEETH!!" His friend Luke promptly responded "COOL!!!" Later that day we went to get our hair cut and he told the girl cutting his hair that he thinks with his teeth missing in the front he looks like a tiger!! I think he says that because the two front teeth that are remaining look like fangs.

I thank God that Alex handles the changes in his life so well -- whether it's hearing aids or metal crowns and missing teeth.

Alex was so much more aware of what was going on at the hospital this time. He acted a little afraid in the operating room prep area. Once they started giving him medication to sedate him he was laughing and saying "woooohh, I feel happy". The surgeon and nurses got a kick out of that.

On to another subject....I have joined a group called "Band of Parents". This group is made up of parents from all over the country whose children have been diagnosed with neuroblastoma. Some of the children are in treatment, some are in remission (NED), some have passed away. The brave parents that have started this organization have children who are currently being treated with 3F8 antibodies. These antibodies come from white blood cells produced in mice. They are carefully prepared and injected into children with neuroblastoma to kill the NB cells. This treatment is very painful, but it works. Currently, the doctors at Memorial Sloan Kettering in New York City are doing research to try to "humanize" this antibody. If Alex should relapse, this is the path we would have to take.

Mind you, I am not focusing on a possible relapse. I pray that never happens. I'm just at the point where I know God has given us a huge responsibility with a child like Alex. I want to be proactive in raising awareness for this horrible disease. Nueroblastoma is kind of an "orphan cancer". It doesn't get Federal funding for research. Were it not for research, Alex may not be where he is today. My prayer is that we can be a part of making people aware.

BoP has a website called www.BandofParents.org. On November 16, BoP is going to be unveiling a website called www.cookiesforkidscancer.org. It is a holiday fundraiser. 100% of the proceeds will go directly to NB research at Sloan-Kettering. The cookies are being baked and packed by students at the French Culinary Institute. These students are donating their time to help a worthy cause. If anyone wants me to email them a flyer, I would be happy to do so. My email address is Barbcr8m@netzero.net.

Thanks for checking in on us.

Tuesday, November 6, 2007 7:50 PM CST

Hi Everyone.......we are home!

Things went well. The dentist could not save Alex's four front teeth. Poor baby. So, all together, Alex ended up with three root canals, 8 metal crowns, four extractions and the rest fillings. There were three teeth that were not decayed -- two of them being new teeth.

The Lord is so faithful. Alex didn't have just any dentist working on him. The head of the dental clinic at Rainbow was the Attending. Dr. Ferretti came out before Alex went into the OR and explained to us that he wouldn't be able to save the four top front teeth and that they probably wouldn't come in anytime soon. Dr. F. has specialized and worked with bone marrow transplant patients for over 26 years.

As Alex was coming out of the anesthesia, he was crying and pointing to his mouth and saying "it hurts, it hurts". It must hurt because Alex DOES NOT complain of pain -- ever. I asked the docs if we could please take something stronger than Tylenol home with us today for the pain. They gave us some Tylenol with codeine. Alex also needs Amicar (clotting medication) for three days.

Before I forget, Alex got platelets and he incremented nicely -- a BIG 145!!!! We were hoping for 50! We know that the platelets have already taken a big dive, but we enjoyed them while we could! :)

Dr. Perry removed Alex's mediport. In it's place, Dr. Perry made a train shaped bandage for Alex -- complete with steam locomotive, box car and caboose.....labeled "Alex's RR". Do we have the best docs, or what????

Alex thinks he should go to school tomorrow, but his mommy and daddy disagree. We will keep him home for one more day of recovery. He's got a good bit of swelling and I'm wondering what kind of a night we will have.

Thank you for your prayers. Please pray for Ariana's family. Ariana passed away on Saturday night at her home surrounded by her family.

As always, thanks for checking in on us.

Thursday, November 1, 2007 12:02 AM CDT

Hi Everyone,

Alex still has a nasty cough, but he was like himself by Tuesday. I'm glad he didn't have school Tuesday because that gave him an extra day to recover.

Are Buzz and Woody too cute, or what? Woody is actually Alex's good friend Luke. Luke wanted to be Woody (from Toy Story) and he asked if Alex would be Buzz Lightyear.

I was able to go down to Alex's school and help out in the class yesterday. Words cannot express how I felt yesterday. Watching the kids parade around the school and helping out with "pumpkin bowling". It was like heaven on earth for me. The classroom beats a hospital room hands down!!!

As I was walking toward the school yesterday, I almost burst into tears with gratitude. The Lord has been so good to allow us to get to this point. Sure, we have to go into the hospital next week, but not for chemo. We still have our struggles, but we are reminding ourselves how far the Lord has brought us and that no matter what, he will continue to carry us through.

I'll keep you updated next week on the hospital stay. Please pray for us. Anytime your child goes into the OR it's a little scary. Alex has to have 16 teeth either root canaled or filled. The good thing is the mediport will be taken out on the same day.

Thanks for checking in on us........

Monday, October 29, 2007 1:43 PM CDT

Hey Everyone,

Alex is home from school today. He has another cold. He has been up coughing all night for the past two nights. We didn't go to bed on Saturday night until Sunday morning at 6:30 a.m. (does that make sense? I'm a little sleep deprived) We've been doing the breathing treatments etc. This is the third "cold" since the last week in September. Alex has been very upset when he has to miss school, however, today he wanted to stay home.

The school district has a late-start tomorrow so PM Kindergarten and PM preschool have no school. (That will give Alex an extra day to recoup). I really hope he is well enough to go to school on Wednesday because they are having a costume parade. Alex is SO excited because he is dressing up as Buzz Lightyear and his friend Luke is dressing up as Woody.

Alex's dentist and surgeon have coordinated their schedules to do the dental work and remove the mediport. He'll be admitted the evening of November 5 for platelet transfusions and have both procedures done the morning of November 6. Hopefully we will be home by the end of the day on the sixth. Again, Alex doesn't have school on the sixth because of election day.

Well, I'm going to check on my little patient.......thanks for checking in on us.

Friday, October 26, 2007 9:19 AM CDT

Hi Everyone,

We've had a few days to take in the news of the dental work. I think we are putting it into perspective. We are thankful that the Lord has spared Alex's life. We can fix the dental problems and we can fix the hearing problems. It's just so hard to see Alex having to endure the procedures.

When Alex was done with x-rays and getting his teeth cleaned, he asked me if he was brave. I told him he was VERY brave.

A couple of parents have contacted me and informed me that their kids have gone through the same thing. Believe it or not it's comforting to know that we are not alone.

On a more positive note, we got to go to the circus on Wednesday night. The wife of my former boss in D.C. is friends with the General Counsel of Ringling Bros. Julie contacted me a couple of years ago to ask if Alex could go to the circus, but he wasn't able to. This year he was permitted to go, so we contacted Julie and she set us up with some tickets. The promoter met us at the box office and they took us to meet the Ring Master and the guy they shoot out of the cannon! Alex was very impressed with the "cannon guy"! We had a great time.

As it stands right now, Alex will be admitted to the hospital the night of November 5. They'll pump him full of platelets over night in order to prepare him for the operating room. The morning of November 6 he will have his dental work done and his mediport removed. Please pray that Alex doesn't get sick between now and then. A lot of coordination had to happen between the surgeon and dentists schedules to get them in the O.R. on the same day. Alex is congested again today. I'm hoping it's allergies and not another cold.

Thanks for checking in on us.......

Tuesday, October 23, 2007 4:43 AM CDT

Good Morning Everyone,

On a good note, Alex's platelets held steady and even went up a little. They are a big 13.

On a not so good note, we went to the pediatric dentist at the hospital yesterday. All but three of Alex's teeth have major cavaties. All eight of his molars have to have "baby" root canals and metal crowns. The dentist was going to pull all four of his front teeth, if his secondary teeth were about to come in, but they aren't, so those teeth will have to be filled and possibly crowned.

I burst into tears when they showed me the x-rays and started to explain to me what was going on. The dentist assured me that this was not our fault and that they have seen this MANY times before. This is yet another way that the chemo has taken a toll on Alex's body. Because of the high-dose of chemo, mucisitis, high-dose antibiotics and let's not forget radiation, the teeth dry out and become very vulnerable to decay.

I asked the dentist if she could tell me what Alex's secondary teeth look like. She showed me his panoramic x-ray and there are some teeth buds, but she said they can't guarantee that these teeth will develop normally and come in. The dentist then reassured me that there was nothing we could have done to prevent this. She says she sees cases of dental neglect all of the time and this is not one of them.

As it stands right now, we are going to try to coordinate all of the dental work with the removal of the mediport. Alex has to be under sedation to dental work at this point.

It's just like with the hearing aids. The chemo saved Alex's life, but it has taken it's toll on other areas of his body. We'll get through this like we have everything else, but I am discouraged right now. Alex has been through so much all ready, does he really have to deal with this too? I just need to take it to the Lord and lay it down.

I've been listening to this one song a lot and the words say......"lay down your burdens, I will carry you, I will carry you my child, my child." The song talks about how God gave vision to the blind and parted the sea, that nothing that happens goes unseen. Even though some lessons are hard to learn, He is with us and he cares.

Thanks for checking in on us.......

Tuesday, October 16, 2007 6:53 PM CDT

Hi Everyone,

Alex is doing better. He's still needing breathing treatments in the middle of the night. Poor guy.....he's been sitting up in the Lazy Boy so as not to cough all night long.

Sara Mae's mom called me crying this evening. Ariana has relapsed -- she just went through transplant. There is nothing more the doctors can do for her. Katherine also told me that Emily has 7 new tumors. What's so sad about that is that the last time Alex was in the hospital, Emily's family brought in a cake and we all celebrated her last chemo treatment.

If you remember, the last time Alex was in the hospital we were in with Addison, Emily and Ariana. Addison passed away, Ariana has relapsed and Emily has 7 new tumors. Pediatric cancer is so awful. Please pray for these parents. They need strength, comfort and peace. Anna Marie is Ariana's mom -- she is asking that we pray for a miracle. Oh how we do.

We know how precious the time we have with Alex is and we are so thankful for the time we have with him.

Thanks for checking in......

Friday, October 12, 2007 7:59 AM CDT

Well, Alex ended up with a fever. With a central line, a temp of 100.4 is considered a fever that could be dangerous. Around 3:00 p.m. Alex crawled up on my left shoulder and said he was feeling really sick. This is coming from a child who doesn't complain when he is sick. I took his temp and it was 100.2. I called clinic to let them know and to tell them that we had changed our pediatrician appointment for today to a sick visit.........no can do........Alex's BMT doc said she felt "very strongly" that Alex come in to the ER and get IV antibiotics. She said that with all he has been through in his little life we were not going to take any chances.

My neighbor Judy was kind enough to take us downtown to meet Craig.

When we walked into the ER, it was packed!! It's inner-city Cleveland, so that is to be expected. Anyway, the nurse behind the desk asked our name and when I said that the cancer center had sent us, she put us in seclusion. Before we were moved, two doctors recognized us and came over to see Alex. We sat by ourselves for about five minutes and the nurse was ready to move us into a room. When the nurse came to get us, she said she felt like she should know us because everybody else in the ER did. I told her we were frequent flyers. As Alex was getting his vitals done, another one of our favorite doctors (Dr. Hadad) came over and greeted us. The nurse said she really thought she was missing out in not knowing us. I explained to her that after three years of regular hospital visits you get to know everyone from the cleaning people to the surgeons.

ANYWAY.......they did a chest X-RAY and it was clear. The docs told us that they were waiting for some of the blood work before giving the IV antibiotic and then we could go home. Dr. Hadad came in the room and announced Alex's platelets were 12 !!!!! Craig and put our arms straight up in the air and cheered. Dr. Hadad laughed and said he told the nurse he knew that we would be happy and that is why he wanted to come and give us the news. Whew whoo!!! Double digits!!! Dr. Hadad saw Alex's black eyes last week and was pleased to see that even though he's still really black and blue, he's looking better. He told Alex that even though his platelets were up, no football, no ice hockey and NO sumo wrestling!!

We got home at about 9:00 p.m. I had had a pork loin cooking that ended up going to waste, but at least we didn't have to stay at the hospital.

Alex and I got very little sleep last night. Poor little guy........he says his stomach hurts from coughing so much.

Alex has an appointment next week to schedule the removal of the mediport. Once the mediport is removed, there is less chance of us ending up in the ER.

I'm so thankful we are not in the hospital. However, Alex only had 10 days between colds. I know this is because he is in school. It hasn't even been offically declared cold and flu season. He is just so vulnerable to picking up illnesses. I will definately be going to the grocery store, etc., while he is in school so that we aren't over-exposing him to germs over cold and flu season. Even though he looks good, his body is still healing on the inside. After talking to other parents, it is easy to conclude that once your child has a bone marrow transplant it takes years for their body to fully recover. Minor illnesses like a cold pale in comparison to chemo, so we'll just keep chugging along.

Thanks for checking in on us........

Thursday, October 11, 2007 8:46 AM CDT

Only time for a quick update.......

Alex is sick again.......he was up most of the night coughing and we had to do a breathing treatment. We are suppose to go to the pediatrician tomorrow for immunizations, but I don't think that is going to happen.
I've made a couple of calls this morning to find out what the docs want me to do.

When I called Mrs. Matthews to tell her Alex would not be in school today, she said that five out of ten kids in Alex's class have been out sick this week.

Please pray Alex doesn't get a fever.

I'll keep you posted.

Tuesday, October 9, 2007 8:18 AM CDT

Hi Everyone,

As you might have guessed, Craig and I are very happy that Alex is still cancer free!! Thank you so much for your prayers. The Lord has been very gracious and merciful to us.

Today is picture day at school. Craig thought that perhaps I would not allow Alex to have his picture taken because of the two black eyes. To the contrary......it is what it is. We live with an active little boy with gravely low platelets. I know people probably get tired of hearing us talk about the low platelets, but the fact of the matter is they are a HUGE part of our daily life. Almost everything Alex does, we have to be concerned about how he may bleed.

For example, yesterday Craig had the day off. Craig thought it would be nice, since we don't get out by ourselves much, to go out to breakfast after Alex got on the school bus. The waitress had just brought our food and my cell phone rang. Alex's teacher was calling to say that blood was dripping around his hearing aid and out of his ear. She said he was at the school clinic and we should pick him up. We asked the waitress for a "to go" bag and went immediately to the school.

I knew what the problem was. Alex gets wax build up in his ears that is kind of gooey and runny. (EEEEWWWW!!!) This was clogging up his hearing aid. I cleaned the aid and then swabbed his ear with a Q-tip and peroxide. Because of his platelets being so low, the tissue in his ear canal (as well as his nose and mouth)is VERY sensative.........that tissue started to bleed and didn't stop for several hours. I thought the bleeding had stopped before he went to school, but I think when I put his hearing aid back in that irritated the canal and thus the bleeding began.

We called clinic and started the amicar. All day his ear canal would fill with blood. Everytime the blood started to dry, Alex would itch the outside of his ear and that would be enough to start the bleeding again. By evening, the bleeding had stopped. Things look much better this morning.

Alex was upset that he had to leave school, but we made the best of things by spending time together as a family.

The Lord is teaching me to remain calm in these situations. We never know what a day might bring and we have to roll with the punches. This has not been a lesson easily learned because we've had some pretty intense moments. I just pray that the platelets will recover to a point where he's not in such danger of bleeding.

I have to call the surgeons office this morning to make a consult appointment to get the mediport taken out!! Dr. Villella is comfortable enough to move the scan schedule to every six months. These are HUGE strides that we are making. It's been a long, rocky three years, but we are making progress.

The children who are still fighting are always on my mind and in my prayers. The experimental treatements that they endure are painful, and yet they go on and so do their families. Please keep praying.

Thanks for checking in on us.

Friday, October 5, 2007 4:00 PM CDT

Hi Everyone --

We just found out minutes ago that Alex's scans are clear!!

The Lord has been very faithful to us once again. Thank you for your prayers.

More later.....I have some calls to make.

Tuesday, October 2, 2007 6:54 PM CDT

Hi Everyone,

We went on Alex's first field trip today. We went to Gede Farm where we picked apples and a pumpkin.

It's nice to see Alex with his class. He was sitting on the bus and chatting away with his friends Luke and Nicholas on the way to the farm. It does my heart good to see him with other kids and having fun.

Alex kept hugging me and saying he was so glad I came with him today. When we returned to the school from the field trip I asked him if he wanted to ride home in the car with me and he said no!! He took the bus home with his friends! I thought that was so funny..........I'm telling you, I have a harder time with him riding the bus than he does!

As you can see, his face looks pretty bad. That all came from one bump on the head. Like I said before, those low platelets are going to drive me insane!! I'm convinced the Lord has protected Alex from MAJOR damage to his head. You should see the reaction from people when they look at him. The picture doesn't do the bruise justice. It is horrible.........both of his eyes in the corners are a dark, red purple.

I know I mentioned that Thursday is scan day. Alex's scans are not scheduled until late in the afternoon, so he will have to go without eating all day. His first meal of the day will be dinner time on Thursday. Alex has become a real pro at not eating, but he still gets hungry. We'll try to keep him busy until he gets the "sleepy milk". Scans are never an easy time. Please pray that the Lord will sustain us and prepare us for whatever news we may receive.

Thanks for checking in on us.........

Tuesday, October 2, 2007 8:35 AM CDT

Hi All,

Sorry for the lack of updates last week. We had a busy week.

Thursday is scan day. Another family going through some pretty harsh treatment right now refers to scan time as "walking the line between faith and fear". When you have faith in God you know in your head your shouldn't fear, you should have faith. However, the thought of your child suffering from a horrible disease tends to makes your heart afraid.

Alex bumped his head over the weekend -- smack in the middle. He had a HUGE knot. When he woke up yesterday morning, all the blood from that hematoma drained down into Alex's face. So, his eye lids are swollen and he is a lovely shade of blue all the way down to his nose.

Sometimes I think the low platelets are going to drive me insane.

On a positive note, the cold seems to be clearing up.

I need to sign-off. Alex's class is going on a field trip to a fruit farm and I get to go along. I'll try to post some pictures later.

Thanks for checking in on us.

Monday, September 24, 2007 1:39 PM CDT

Quick update.......

We went into clinic and Alex's platelets held pretty steady at 10. His ears are red and look like they are on the edge of infection, however there is no need for antibiotic. We'll just keep giving him Sudafed.

Scans have been rescheduled for October 4th in the late afternoon.

Thanks for checking in on us........more later.

Sunday, September 23, 2007 4:23 PM CDT

We are scheduled to talk to Alex's nurse tonight regarding scans. I think we are going to reschedule the scans. Alex has been up coughing almost all night long -- for three nights. He is really congested.

If we go through with the scans we risk getting a false reading. Let me explain......the drainage from the cold can make Alex's lymphnodes light up on the scans. There is no way to tell on the scans if the "nodes" are lighting up because of drainage, or if their lighting up because of a relapse. To be sure there is not a relapse, Alex would have to return to the hospital for three more days of scans.

We will still take Alex to clinic tomorrow. He needs to have labs drawn, etc.

Thanks for checking on us.....I'll keep ya posted.

Thursday, September 20, 2007 7:25 AM CDT

Hi Everyone,

Please pray for Alex. He has been up tossing and turning with what appears to be a cold. He's even complaining of a sore throat. This could affect his scans on Monday. I'm going to call clinic and let them know.

Alex is also missing his first field trip with his class today. He is SO disappointed that he cried and said he wants his class to stay home too.

Tuesday, September 18, 2007 7:28 AM CDT

Hi Everyone,

I turned my computer on this morning and went to James' website. He passed away peacefully at 9:30 p.m. last night with his mom and dad by his side. His parents said they know he is whole again and with the Lord. Still, this was their only child and I'm sure they are hurting from the loss.

Over the last couple of weeks I have been made aware of a campaign by 5 fathers whose children have neuroblastoma. I wish I would have said something sooner to you about it. These fathers are in the process of biking on "The Lonliest Road" -- Route 50 -- through the country. They started out in California and will end up in Washington D.C. If you get a chance, Google "The Lonliest Road Campaign". All of this is in an effort to raise funding for neuroblastoma research. This cancer does not get any Federal funding, so it is up to us parents to come up with the money.

Yesterday the fathers made a stop in Denver, Colorado. They visited the children's hospital where they were able to meet other NB patients and their families. There was a man who came out to meet the fathers who was diagnosed with NB 20 years ago -- A SURVIVOR!!! This man is actually getting ready to have his own child. I cannot express to you how encouraging and amazing that is. Only 20-30% of NB patients diagnosed survive, and you really don't hear much about survivors.

I pray all the time about what it is the Lord wants from us as a family to do with what we have been given. Once this disease comes into your life, you know you can't not do something to help the cause.

Like I said, if you get the chance, check out "The Lonliest Road Campaign".

Thanks for checking in on us.

Sunday, September 16, 2007 9:18 PM CDT

Hi Everyone,

You didn't hear from me much last week because it was a busy week. We spent last weekend in Akron visiting the National Inventors Hall of Fame, going to a baseball game and seeing a Thomas movie.

Alex is doing great in school, but not so great at home. He has the petichia all over his face to prove it. I have talked to his teacher and she said this is not unusual. The children will be very well-behaved at school and then they let it loose at home!!

He loves school and is making new friends. Last week was the first week that everyone was assigned a "job". They take turns at these "jobs" in the classroom. Alex didn't understand the "taking turns" part. His friend was chosen to be the "teacher helper" first, someone else the "weather helper", etc. This did not go over well.........hence a bit of a fit. He's learning though. Mrs. Matthews sent home a note and we talked about it. The next day he went in and told Mrs. Matthews that even if he didn't get to be a helper, he would be happy for his friends who were........that's my boy.

About the picture on the web page......Sara Mae and her family were finally able to come and visit this weekend. We have been planning this for about a year and it finally happened. We had a birthday party for all three girls. Their birthdays were in August. Because of Sara Mae being in the hospital, we were unable to see them on their birthdays. We had so much fun with them. Alex and Sara Mae are like two little old people. They talk to each other like little adults. It is SO CUTE!!

Katherine (Sara Mae's mom) told me that Adison passed away. Adison was the little girl that was going to need hearing aids and her parents talked to Craig and I about it. This little girl was having "mini" bone marrow transplants. Katherine and I were talking about how only God knows why these children have to suffer. We know that these children are great in the eyes of God, but it is so hard to see these families suffer.

When going through a trial like this you have to learn to trust God and God only, but it takes time. I'm not completely there yet, but I have learned to stop beating up on myself for being fearful and sad sometimes. We don't live an ordinary life. I don't think a week goes by without us hearing of a child dying from cancer. Some we know personally, others through our website. Sixteen kids a day die from neuroblastoma.

What God is teaching me these days is to trust him and when I am tempted to be fearful, trust him and lay it down. Alex's scans are September 24th and we know that we have to trust that God is holding us in his righteous right hand and we can lay that burden on him.

I have to say that I have such joy in hearing about everything that Alex is learning in school. He doesn't go to school on Fridays, so that is special time for the two of us. This past Friday we went to Dr. K.'s and then to the Mall to get Sara Mae and her sisters a little something for their birthdays. I found myself walking in the mall, holding Alex's hand, smiling and singing the song "Brown Eyed Girl". I wasn't randomly singing that song, it was blaring over the loud speakers! :) I really thanked God for that joyful moment. That may sound ordinary to some people, but for Alex and I it was special. We had been secluded for so long, that I was afraid to live life, then when I did try to live, it was hard. We do not live in a quiet peaceful world. I'm having to break back in to this craziness. i.e., traffic, the grocery store......life is loud!

Please continue to pray for James and his family. His parents are so strong in their faith and they are trusting God as James' days on earth draw to an end. He is really close to the end right now. I only know these people through their website. James is dying of neuroblastoma. This little boy has told his parents he and Jesus are talking and his parents are comforted by that.

Thanks for checking in on us.

Tuesday, September 4, 2007 11:07 AM CDT

Hi Everyone......We hope you had a nice long weekend.

When Alex got off the bus on Thursday,(he doesn't go to school on Fridays) I asked him how his day was. He said....and I quote......"much better!" He told me that he made two new friends.

His teacher called later to say that he had a great day, he wore his helmet during school with no problem and didn't fuss when asked to line up to go to the bathroom with the rest of the class. One of the problems Alex had last week was that he didn't have to go to the bathroom when the class is lined up to try to use the potty. Mrs. Matthews wasn't going to press the issue, but I told her that if the rest of the class is going then Alex should at least try. If it is part of the class routine, then it should be part of Alex's routine. Alex cooperated on Thursday, however, he did ask Mrs. Matthews why she couldn't just ask WHO has to use the bathroom..........Mrs. Matthews said she was trying so hard not to laugh. She said he wasn't rude about it, he just had a suggestion......... That's my boy!

On Friday night we went to a high school football game. Our school's team mascot is a bulldog. Alex has a t-shirt from preschool that says he is an "itty bitty bulldog", so he was excited to go to the gaem. We had a good time watching our team win with our friends the Ellis'.

Right before we left for the game, one of our neighbors came over and gave us tickets to the Cleveland Air Show. These were not just any tickets, they were loge tickets, so we could be under a tent. (Thanks Eric!) We had the best time. Alex was so excited the whole day. It was so fun looking at all of the airplanes and helicopters up close. Alex loved the NASA exibit. He is really into the space shuttle right now. Alex was blown away (as were we) by the Thunderbirds. Those fighter jets are awesome.

It was so nice to feel like we were doing something "normal". Craig and I were remembering that three years ago friends of ours gave us tickets to the air show, but Alex spiked a fever out of no where so we didn't go. He had been get fevers on and off that whole summer and we didn't know what was going on. I would call the pediatrician and she would say "keep an eye on him". The fever would go away, and she didn't feel the need to see Alex. If we had only known then what we know now........That being said......With Alex feeling so great and friends giving us tickets to the Air Show again, Craig said he felt like this was an instance of the Lord restoring our fortunes. We really did have a wonderful time. It was a beautiful day and the airport was right on the lake front. Alex was so happy, we could not have asked for more.

Thank you for your prayers last week. School is a big change for both Alex and Mommy. Talk to you soon.

Wednesday, August 29, 2007 1:36 PM CDT

First day of school good.........second and third......not so good.

Yesterday Alex was having a hard time adjusting to the classroom situation. He wants to be with his friend Luke all the time and doesn't understand why he can't. Because he was frustrated, he started pounding his head on the wall. This scared the teacher because Alex is still at such great risk for internal bleeding.

Today he didn't go to school because he tripped and fell head first into the sidewalk. His head has a HUGE bump on it, the bridge of his nose is one big clump of blood, his knees are bloody and his hands are scraped up. After I started to apply ice, etc., I called clinic. Clinic said start the Amicar (clotting med) watch the bleeding and keep him home from school.

I called Alex's teacher and told her what happened. She said she would feel more comfortable if Alex wore his helmet in class until he learns to use his "walking" feet. He has tripped and almost hit his head a couple of times just within the first two days of school. I understand her concerns. The school nurse contacted me and they have talked to the principal and it has been decided that for at least the first three weeks of school Alex needs to wear a helmet at all times. We will re-evaluate the situation in a couple of weeks.

Please pray for Alex.

Monday, August 27, 2007 9:12 PM CDT

Hi Everyone,

Before I forget, I have added new pics to the photo album.

What a day! Alex's first day of school was great. The teacher called me after Alex arrived home and said that he was SO EXCITED all day long. I must admit, I cried like a baby watching that school bus drive away.........then Craig and I got in our car and followed that bus!! We got cut off by a train, but that didn't stop us........we then proceeded and hid in the parking lot across from the school until Alex's bus arrived. We watched him JUMP, that's right I said jump, off the bus and wait for his friend Luke. Alex was all smiles. He had a great day! They read stories, worked on an art project, etc.

One of the reasons Alex's teacher called is because his class is suppose to go out on the playground every now and again. I called clinic and they said no to the playground because it is a regular playground and the risk for a head injury is too high. Plus that pesky mediport puts him at risk too. I was really sad about that. Alex will join another preschool class for other activities when his class gets to go outside on the playground. I can't tell you how disappointed Alex is. When they play ball in the gym for large motor skill development, the teacher asked if I could come down to the school just to make sure he will not be put at risk for too much bruising. Today was just another reality check for us that Alex has not quite arrived yet. However, when I think about where we were two years go......just a few days post-transplant, radiation and too many blood transfusions to count, I thank the Lord. God has been so good to Alex to bring him this far. It's hard for me to let my baby go on a big yellow bus and be taken care of by teachers and not me. I just keep reminding myself where we were,how far he has come and how much he loves school.

Alex's teachers, Mrs. Matthews and Mrs. Rader are wonderful. Both of them came to our house last week to visit Alex on his turf. Alex gave them a tour of the house!! She really understands where Alex is coming from developmentally. We can just see the hand of God ordering every step in this process We didn't have to fight for one service. The school is providing speech, fine motor skills, the FM transmitter, etc.

We know of a little boy named James that is one month to the day older than Alex who was suppose to start kindergarten tomorrow, but instead is being taken care of by Hospice. I know the school year can be hectic and things can get crazy, but please, for those of you who have healthy children.....thank the Lord and love on them as much as you can. Ok, I'm getting down off the soap box now.......Thanks for checking in on us.

Tuesday, August 21, 2007 11:00 AM CDT

Good news......platelets are now in the double digits! A big 13 !! Woooo hooo!! Red cells are 10.9 and white cells are 5.8.

Everyone at clinic was happy for the double digits. When we got in the car to go home, Alex asked me how many platelets he has to have to ride a skateboard! I said a lot more than 13!!! He is such a boy!!

The docs seem to be very happy with his progress. If all goes well with his scans on September 24th, we will set up a time for him to have the port removed. Wow! That is a big step. The port poses more of a threat to Alex now that he will be starting school and be exposed to more illnesses. Dr. Villella also sent an immunization outline over to Alex's pediatrician. We also found out that Alex is well enough to do things like a field trip with his class to a farm in October. He can even go on a hay ride this year!!

As his immune system recovers, he will probably end up getting a lot of colds, etc., but hopefully nothing like the past. We won't be as secluded this winter either.

It's the weirdest feeling........we are taking these small steps of faith and slowly returning to a "new normal". I've started driving again, so a couple of weeks ago Alex and I went to the grocery store by ourselves for the first time in a couple of years. We also did something we hadn't done since his diagnosis. The two of us went down to Grand Pacific Junction got an ice cream and watched the trains go by. I'm so thankful for moments like that. Last week after dinner we were out in the backyard playing baseball and Alex said "choke up on the bat Mom!" Then when it was his turn to hit the ball off the "T" he blew on the bat and said "let's go baby!" I'm telling you, those are priceless moments that I thank God for.

Next Monday, Craig took the day off because we are going to be putting Alex on a school bus!! I do not understand parents who are happy for the first day of school. Alex starts preschool at the primary school just a couple of miles down the street from our house. They'll be able to provide him with speech and the occupational therapy he needs. Not to mention the boots on his hearing aids.

It's such a bitter/sweet time for us. We are so thankful to the Lord for Alex to be well enough to go to school, but it is hard to let go!! Alex's teacher told me we could get in the car and follow the bus if we wanted to...........I think we might want to!!

The Lord has been so gracious to us. To say the least, things have difficult over the past couple of years.

Last week was a really hard week emotionally because a 16 girl that we knew through our website died. She had NB, but actually died from a collapsed lung. I think her body was just so weak........then another little boy with NB ....the only child of a couple in North Carolina who is exactly one month older than Alex relapsed and was given 2-8 weeks to live. His parents signed DNR papers and took him home. I know that could so easily be us, but for now it is not God's plan.

Also, Sara Mae was taken by helicopter to the hospital last Thursday.......I just got the call yesterday. She had another bought with septic poisoning.

My heart aches for these children and their families. Please keep them in your prayers.

Thanks for checking in on us. I'll post a picture next week of my little guy (who isn't so little any more) getting on the bus!!

Monday, August 13, 2007 8:18 AM CDT

Alex is doing better. His cough is really hanging on. I think we are on day 15 of the cough. I ended up taking him to the pediatrician last Wednesday to make sure his ears were not infected. The fact that Alex didn't break out in a fever and we didn't end up in the ER or RB2 is miraculous. Maybe his immune system is starting to kick in! I must admit that I was watching him like a hawk last week. The fevers are SO sneaky, you just never know when one is going to pop up!

Alex is starting to "self-diagnose". Last week after he was up several nights in a row coughing he said "Mommy, I think I need tylenol or an antibiotic". Thank you Lord he didn't need either one! We did end up doing several breathing treatments, giving him a decongestant and nose spray. In comparison to our past experiences, treating the cold was a breeze.

Alex's face is covered in petichia because he was being a stinker last night and got sent to the time-out chair. He hates time-out. Whether he sits in time-out or I restrain him, he yells "call th ambulance!" (pronounced "ambiance") I wonder if the neighbors think I'm beating him???? The screaming is what causes the petichia on his face. The coughing from his cold hasn't helped either.

We will spend the better part of next Monday at the hospital. First we have a radiation check-up. That's at least 2 hours. Nothing too serious, just a check-up. Then, we will head up to clinic for blood work and a platelet check. We'll also find out what day in September Alex's next scans are scheduled.

I need to go downstairs and get Alex some juice. Thanks for checking in on us.

Tuesday, August 7, 2007 7:32 AM CDT

Hi Everyone,

Quick update....Alex is sick with a cold. At first I thought it was allergies, but it's not. So far he hasn't had a fever! YEAH! However, he has been up coughing for the past two nights. The cough medicine he is allowed to take isn't doing the job.

I hate when he is sick because it hangs on for so long.

Please pray we don't end up in the hospital and that this passes quickly.

I'll keep you updated.....

Monday, July 30, 2007 8:53 AM CDT

Hi Everyone,

Alex is bruised but doing pretty well. His hearing test went well. The hearing aid that was broken came back in great condition -- it's basically a new hearing aid. With his hearing aids in, he hears most of the high-pitch tones during the hearing test. He continues to struggle with background noises, but is learning to handle it much better.

We are starting to see the fruits of our labor concerning Alex's behavior. He can throw some MAJOR tantrums. Once he starts, he has a hard time coming down. I've been praying that God would give me wisdom and He was faithful. I'm not sure if I told you this story, or not. Alex has a habit of banging his head when he is in time-out, which is just as dangerous, if not more than us spanking him. We have to be super diligent in protecting him from head injuries. Alex was throwing a fit and I went out to the garage to get his bike helmet. The answer to my prayers was right in front of me........a nylon lawn chair....... If he pounds his head, he hits nothing but nylon, no wood, metal, etc.

Last week Alex was having a bad morning and had done a couple of time-outs. I talked to him about it and he told me that it was Craig's fault. Alex had fallen asleep in the family room before Craig could take him up to bed, read and say prayers. Alex went on to tell me that if Daddy would have prayed with him the night before about his behavior, he would have had a better morning. (talk about passing the buck!!!)

We went out to Sara Mae's house on Saturday. Craig teared up when he saw her. (I had seen her earlier in the week at Clinic). The last time Craig had seen Sara Mae she was on a ventilator. She was up and running around and happy to see Alex. Alex, Wilma, Sara Mae and Ella played in their playhouse for quite some time. Sara Mae has been through SO MUCH and yet she continues to endure.

God is constantly showing us how to perservere through the examples of our children. Eli, Katherine, Craig and I were talking about how if we were as sick as the children have been, we would give up. Alex and Sara Mae keep going......they almost get annoyed with the fact that their illness gets in the way of playing!!

Please pray for Arianna and Adison this week. From what I have heard, Adison is in the PICU and Arianna will be having her stem cell transplant today or tomorrow. Pray for strength and endurance for their parents and the children.

Tuesday, July 24, 2007 8:21 AM CDT

Last week was very busy which is why I didn't update the page. Craig's nephew Gabriel came and stayed with us. Two only children -- 6 years apart in age -- need I say more? Alex had a rough time having another child here 24 hours a day for a whole week. He's not use to sharing Mommy with another child. It was the typical "he's touching me" scenerio. There were times that I felt like I should have been wearing a striped shirt and a whistle! Alex spent some time in the time-out chair. All that aside, we had a good time. We spent the evenings playing miniature golf and arcade games.

We have doctors appointments 4 out of 5 days this week. Yesterday was clinic. Platelets were a big 8. Not much improvement. Alex is really bruised. The littlest bump when he is playing, etc. can cause horrific bruises. He has one on his hip that is about 6 inches in diameter.

The nurse was surprised when I didn't flinch at the 8,000 platelets. Frankly, I thought they would be lower considering he looks like he just lost a street fight! When Alex is running around like a typical little boy in the cul-de-sac, I am ON ALERT because I know he can get hurt so easily. I also know I have to give him to God and to just be a little boy. It's so hard sometimes.

Before I forget, his white count was down to 4.8 and his red cells were 10.9. Over all, pretty good counts.

Dr. Villella and I talked about Alex's transition to school. Wow, the Lord is faithful. Two years ago, he was SO sick and we didn't know if he would make it this far. We went to Target last week and Alex picked out a Spiderman backpack and folder for school. I know what you are thinking........What? no trains? He still is crazy about trains, but I think he is expanding his horizons.

ANYWHO! Back to the conversation with Dr. Villella. The plan is to let him ride the tricycles during gym at school providing he wears a helmet. If chickenpox breaks out in the school, not just in his class, we will probably have to remove him from the school. Cold and flu season will be touch and go again this year. I don't think I will be surprised if Alex misses a lot of school, but the school will work with him outside of the classroom. I am glad he is going to preschool and not kindergarten this year. I think his immune system needs more recovery time.

Alex will have scans in September again and then, if all is well, we will be moved to a six month scan schedule! Craig and I are happy about this transition. We walk such a fine line. On one hand Alex has made a lot of progress, but we aren't out of the woods yet. I think the reason scans have been every three months for so long is that Dr. Villella knows the nature of the beast. Neuroblastoma is such a sneaky, horrid cancer. Just when you think things are good, it strikes back.

All that being said, Alex looks so good and is doing so well that it is hard to believe the cancer could come back. Dealing with things like speech, occupational therapy and hearing loss are so dim in comparison to chemo and radiation.

Sometimes it is tempting to worry about the future and the what if's. We just have to keep our eyes focused on the Lord and be thankful for today.

Well, Alex wants eggs for breakfast so I better go. Have a good day!

Wednesday, July 11, 2007 4:27 PM CDT

Hi Everyone,

Sorry about the lack of updates. Last week we had a couple of appointments and this week, we have three. Alex had a hearing test today. I have noticed that Alex was starting to drop the endings off his words again. This proved to be true during neuro-psych testing and during speech therapy.

We were a little concerned that Alex had experienced more hearing loss. The test went well. So far it looks like things have remained unchanged. Ellen (the audiologist) did "tweek" the hearing aids. The digital hearing aids are amazing. Ellen hooks them up to the computer and with a few clicks of a button Alex is hearing better.

One of Alex's hearing aid casings was cracked, so Ellen has sent it back to the company to be replaced. You must be wondering "how did the casing get cracked?" Well, I'll tell you.........Alex got angry in the grocery store, and when he was removed from the scene of the crime, he threw his hearing aid on the asphalt.....thus the cracking occurred.

Sitting in the booth with Alex while he was doing his hearing test was interesting. He is so funny sometimes. There is a big box in front of him and when he hears a sound, he is to touch a sticker on the box and then a skittle or M&M appears. Apparently he was getting bored with just touch the sticker with his hands........once and a while he would use his elbows!!! Oh my goodness he cracks me up!!! There were times when I could hear tones that he couldn't -- even with his hearing aids in. It's a little sad to see him just sitting there waiting when I hear the sounds and he doesn't. Alex makes the best of it though. I couldn't help but thank the Lord for giving Alex such a great personality and for the invention of hearing aids.

I think I shared with you the story of being in the hospital and talking to a mom who just found out her little girl has to have hearing aids because of damage done by chemo. That mom talked to one of our doctors and the doctor told me that she felt so much better about their situation after talking to me. Sometimes we are faced with difficulties in our lives and we ask why?...........and then you are given an opportunity to comfort someone else because of your experience. To know that through our difficulty we were able to help someone else is an encouragement to us. That experience reminded me of a verse in II Corinthians 1:3-4 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.

Please keep in your prayers some friends of ours.....Sara Mae, Adison and Ariana. Ariana is getting ready to go through a Bone Marrow Transplant at the end of this month.
I cannot express to you how difficult transplant is. Ariana and her family are going to need supernatural strength in the months to come.

As usual, I'll keep posted.....

Saturday, June 30, 2007 9:36 PM CDT

Ok, so you know my motto over the past two years has been "you never know what a day will bring".......

Shortly after I updated the website, Alex woke up. His foot was red around the "puncture" wound. I noticed that a couple of hours later it was spreading so I called clinic. They suggested going to the pediatrician and getting a tetnis (sp?) shot. WRONG!!!

We ended up seeing one of the partners at the pediatricians office. She took one look at Alex's foot, heard that his platelets were 9 and sent us immediatley to Rainbow Babies and Children's hospital. Apparently Alex had a staph infection brewing. We checked in on Thursday evening and got home Saturday afternoon. Alex ended up on IV antibiotics until the infection started clearing up.

We spent Alex's 2 year transplant anniversary and our 11th wedding anniversary in RB2. Even though it was a little scary, it was good to see everyone. A couple of the nurses fought over who was going to take care of us......Craig and I have our theory on that....we were one of the lower-maintainence patients...:)

Alex's BMT doctor was the attending on the floor on Friday and she asked us if we thought that 2 years ago during transplant we would be doing this well would we have believed it.........I don't think we would have. Alex was on death's door. As stinky as it was to have to be admitted to RB2, it was such a great reminder of how far God has brought us.

We saw some familiar faces and on Friday night, several of us gathered in A-pod and talked while the children played. We had cake in celebration of Emily's last chemo treatement!

It's so comforting to talk to other parents who are going through what we are/have. They understand platelet and immune system issues, and the fact that even though our kids look good on the outside, their insides are very fragile.

One of the mom's noticed Alex's hearing aids and she started asking me questions because it seems like her little girl is going to have to have them too. She said they had just found out last week and she felt so guilty for crying and feeling a little vain about them. I told her I knew exactly how she felt and that we struggled with those same emotions. I told her to acknowledge it, but that God gives the children such grace and that Alex handles it so well. I told her a couple of the stories that I have shared on the website about his reactions when kids have asked him questions about the aids. She said she felt better just hearing about Alex's situation.

Everytime one of the docs asked Alex what happened, he told the story with all the yucky details. They all cringed and could not believe he didn't cry!! The nurses were marveling at how big Alex has gotten and how mature he seems. It use to be that he was a real stinker when the nurses would try to take his vitals. Now, he helps put the blood pressure cuff on and sticks the pulse-ox thing on his finger......it's amazing. He kept saying "remember when I was really sick and we did....." It's almost like RB2 is a second home to him. The nurses just ate him up!!

We are exhausted and happy to be home. Again, God carried us through this and here we are. I'm hoping we have a very non-eventful week coming up.

Talk to you soon.

Saturday, June 30, 2007 9:36 PM CDT

Thursday, June 28, 2007 9:00 AM CDT

Hi Everyone,

Please keep Craig's father Bill in your prayers. His oldest brother is in the last stages of cancer and in hospice care. I think the family would appreciate you praying for comfort and strength to get through yet another loss.

What a week! We are here to tell about it and that is a good thing!

Anytime Alex has a fever, it is scary. His fevers usually stay in the 100 zone, however, this one did not. Even with a Tylenol it was 102.6 at 5 a.m. on Tuesday morning. I called Clinic and they said we should bring him back in to get antibiotic. Quick review -- normally when you have a virus, you have to let it ride out. However, Alex has a port, so to keep the port from getting infected -- which is very dangerous -- they give a mega dose of antibiotic. Craig dropped us off at clinic and Alex's temp was still 101.5 so they gave him a dose of Tylenol. Alex was complaining of a headache and stomach ache. He NEVER complains of pain, so when he does we all know he is having a good amount of pain. His nurse said Alex was probably dehydrated because he didn't take in much the day before. As soon as they gave him a bag of IV fluids he perked up and started playing.

By the time we got home from clinic, his fever had finally broke! That's not the end of the story.........On Tuesday evening, Craig thought he would try putting up one of the blinds that they got me for Mother's day. He had his drill out and had just marked, with the smallest drill bit, where the big screws needed to be. He then took the head of the drill off (with the small bit in it) and set it on the window sill. Alex a.k.a., Curious George wants to see what Daddy had just put down and knocks the head of the drill with the bit in it off the sill........right onto the top of this foot! The head of the drill fell over and the drill bit broke and was sticking out of the top of Alex's foot between a couple of his toes. Craig urgently called for me to come downstairs and by the time I came down the steps Alex had PULLED IT OUT OF HIS FOOT!! He didn't even cry!! I immediately got the first aid kit and started cleaning it out -- while at the same time calling clinic. The doctor that called me back said "he did what?!" I told her it was a very small, brand new bit and that believe it or not it wasn't bleeding to much.

Alex isn't covered by a tetnis anymore because the BMT wiped it out. Thank the Lord he had been given that mega-dose of antibiotic. We didn't have to rush him to the hospital. Never a dull moment.

The weird thing about the past several days, is that Craig and I were taking it all in stride. We were exhausted and at times fearful because of the fever, but we knew God was with us.

Yesterday afternoon, Craig and I went to the nueropsychologist to get the results of Alex's developmental testing. It was truly amazing. The doctor said for all that Alex has endured, his test results were good. They compared his scores to normally developing 5 year olds WITHOUT hearing loss and for the most part he scored average. He scored superior on verbal skills, and for those of you who know Alex you know that wasn't a surprise to us. He has deficits in the motor skills area, so he will receive occupational therapy in preschool. It's hard to go into all of the detail regarding the test results because I haven't really read the 10 page report thoroughly yet. Bottom line.......the Lord has really sustained Alex once again. Craig and I came out of that meeting with such joy. We know where we need to work with Alex, and there is a good deal of work to be done. I'm also learning another vocabulary. I've gone from the medical terminology to educational terms like IEP, 504, Title 1.......I'm telling you, it keeps us on our knees.

By the way, Friday is a BIG day for us as a family......Alex will be 2 YEARS OUT FROM TRANSPLANT!!! It is also our 11th wedding anniversary. We have come so far in two years! We have had our bumps in the road, but here we are. The Lord is good.

Thank you to each and every one of you who has prayed for and supported us in so many ways over the past two and a half years. I've said this before and I'll say it again, no act has gone without notice.

Monday, June 25, 2007 9:25 PM CDT

QUICK UPDATE -- Alex came down with a fever of 102.9 very quickly in the middle of the night. Needless to say, we spent the night in the ER. They decided because his vitals were good it was probably a virus. He got the usual mega dose of antibiotic and we got home at 7:00 a.m. this morning.

I've kept in contact with Clinic all day today. Even with Tylenol, his fever has stayed around 101 - 103.

If this continues through tonight, we will have to go back to the hospital either in the middle of the night or early morning. They are trying to keep us out of the ER tonight. We are running on very little sleep.

Would appreciate your prayers. I'll let you know more tomorrow.

Monday, June 18, 2007 8:14 AM CDT

Good Morning Everyone -- Long time, no update......

The picture above was taken on Father's Day. It's Me and Minnie Me! Did you notice the matching ties and train tie clips? Believe it or not, Alex asks to dress like his father. I'll remind him of that in about 10 years!!

I think we thought that since we don't have clinic but once every four weeks, things would slow down. Not quite! We have been gearing up for preschool -- lots of testing, etc. We have had trips to the audiologist, school, and psychologist.

Alex finished up his neuro-psych testing last week. I think that he's done about 6 hours worth of testing! I'm thinking they should know what they need to know. God has been so faithful in guiding us through this process. Dr. Barry confirmed what Alex's speech pathologist was saying. I should back up a little......Alex's speech teacher had told us in the beginning of his therapy that he was at risk for a learning disability once he starts to read because of his hearing impairment. Alex scores on the lower-end of normal on the phonics testing. Both his speech teacher and Dr. Barry came to the same conclusion and advised us to "nip it in the bud" by continuing speech therapy at school.

Because of Alex's medical history and his hearing impairment, Alex will have always have an IEP (Individual Education Plan) at school. This is a very common thing. We met with the preschool on Friday and gave them Dr. Barry's "rough plan" for the IEP and everybody is in agreement. The special needs preschool is through the public school system. They are going to provide EVERYTHING Alex needs. They work with the behavioral stuff, they will provide the FM transmitter for Alex's hearing aids, and they will also provide the social/speech therapy he needs. The FM transmitter works like this......there are little "boots" that fit onto Alex's hearing aids that transmit a signal from a mic that the teacher wears. The teacher's voice will go directly into Alex's hearing aids so that the background noise of a busy classroom doesn't make him miss out on anything. God has really provided for us. There is also no tuition since we are residences of Olmsted Falls and we pay property taxes. (Boy do we pay property taxes!!)

We are still struggling through our situation at times. Craig's mother dying so suddenly is still such a shock. Alex is asking so many spiritual question these days. It keeps me on my knees asking for knowlege! Alex also wants to look at pictures of Grammy a lot. He keeps asking why God wanted her in heaven and that he is not ready to go to heaven yet.

I'll leave you with a cute story about Alex. Yesterday when we got in the car after church, I asked him what he had learned. Alex said that a little boy asked him if he had toys in his ears. Alex said that he told the little boy no, that they were hearing aids. The little boy replied by saying "oh, those help you hear". Alex said he told the boy "exactly"!! The Lord has given Alex so much grace and strength. He is not ashamed or shy about the hearing aids. He wears them proudly! I'm telling you, when I grow up, I want to be just like Alex!

Friday, June 8, 2007 7:34 AM CDT

Where do I begin??

We are thanking God that he has been gracious to us once again to keep Alex free of cancer. Alex's platelets fell to 4, his red cells to 10.9 and his white count to 4.6. His ANC (ability to fight infection) was 760 -- 500 is considered nuetrapenic. That would mean a hospitalization. I think a normal level is 1500. HOWEVER, his monocytes are rising which means his ANC will increase. Alex's immune system is still weak, but I think it's working hard to recover.

I heard something this week that really described our situation. Just like with Paul and Silas, God didn't remove the prison bars right away, but it was the presence of God that gave them freedom.

Things have been difficult over the past couple of weeks and nothing has slowed down. The sudden death of Craig's mother was devestating to her family. It's heartbreaking. Craig, Alex and I left Ohio and headed for Craig's parents home in Virginia immediately. Two days later we traveled to Pennsylvania for the funeral services. We spent eight days with Craig's family but had to come back to Ohio for scans and doctor's appointments.

It's so hard to believe that Craig's mom is gone. Alex is having a really hard time with it. Night time is the hardest time for him. He keeps asking why God took Grammy to be with Him. When is Grammy coming back to us? He keeps asking very deep questions like when will God make the new earth? When will we all have new bodies?

He just woke up and the first thing he said to me is that he needs a lot of love today because he really misses Grammy.

I think two years ago, Craig and I would have been a wreck through all of this, but God has really been carrying us. We are mourning, but we have peace. Alex isn't going through chemo, but he still has a lot of challenges. Last week we felt so sorry for him. His behavior was difficult at times -- to say the least. On Sunday Alex through a fit, threw his hearing aids and was pounding his head on things. When he finally calmed down, he said that his heart was broken and he started sobbing and said that he missed Grammy. Libby was a really good grandmother. She was gentle and kind and loved all 7 boys so much.

God will get us through this like he has everything else. He has been a refuge and a sheild to us in more ways than I can ever express. Thank you so much for your continued prayers, that is what has sustained us.

Tuesday, June 5, 2007 10:30 AM CDT

Hi Everyone,

Quick update.....we are on our way to school testing.

ALEX'S SCANS ARE NORMAL!!! Thank you for your prayers.

I will update more later

Saturday, June 2, 2007 9:42 AM CDT

Hi Everyone,

This will be a pretty short update because we are exhausted and have a lot to do in the next couple of days. Alex has scans on Monday, so we will be spending all day Monday at the hospital.

On Thursday, May 24, we received the shocking news that Craig's mother had died unexpectedly. Craig came home from work and we immediately left for Virginia to be with his father, brothers and sister. On Sunday we left for Pennsylvania to be with Craig's Aunt and Uncle. Last Tuesday, Wednesday and Thursday the viewing and services were held. We returned home last night.

I will to go into more detail next week. I want to put a picture on the site of Alex and his grandmother.

As I said before, we have a great deal to do as Alex has scans on Monday. I also have to try to get in contact with the preschool as we missed a meeting with his teacher and an IEP meeting. It kinda feels like we are on a treadmill and can't get off.

I do have to say that the Lord was so gracious in that he gave us the strength and grace to get through the week. It wasn't easy but we had a sense of God's peace that kept us going.

As soon as we get the results from Alex's scans I'll let you know. Thanks for your prayers, as you can tell we really need them.

Thursday, May 24, 2007 2:28 PM CDT

Dear Friends,

Barb and Craig received a call earlier today from Craig's father letting them know Craig's mother had died unexpectedly this morning. Craig and Barb are driving to Virginia now to be with his family.

They are shock at this point, please keep them and their family in your prayers as they deal with this loss.

In Christ,
Lisa

Tuesday, May 22, 2007 9:29 AM CDT

Hi Everyone,

I just received a very exciting phone call -- Alex has been accepted at Olmsted Falls Preschool and he got the teacher we were praying he would get. The Lord has been so gracious to us. Yesterday during the first part of his testing with Dr. Barry he did great!! The little stinker made a total liar out of me though.......We were in a room across the hall from Alex where he was doing the first part of his testing. We were talking to Dr. Barry and giving her his medical background. We had never met Dr. Barry before. She was asking us some questions like.....can Alex write his name? I said well, I work with him, but he resists and doesn't even like to pick up a pencil. I told her how I try to make it fun by using things like sidewalk chalk............In the meantime, my son was in the room across the hall writing his name WITH A PENCIL forward AND backwards!!!! Seriously......backwards!!! It really hit me yesterday that even when I think I'm not getting through to him, I am.

He also keeps telling Craig at bedtime that we need to pray to God that he has better days. The childs face is COVERED in petechia -- on top of a black eye, because he was screaming during a time-out. Alex is having some major adjusting to do when playing with other children. It's really sad to see him struggling. He wants to control everything. We are letting him deal with some natural consequences right now. When he has a friend over and he gets aggressive, the friend has to go home. That sends Alex reeling, but I think he is learning.

I started thinking about Alex's scans coming up in June. What if he relaspses? We just enrolled him in school..... We are starting to feel like we have a life again.......Then God in all of his graciousness led me to a verse in Psalm 94:18&19 When I said "My foot is slipping," your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul. To realize that God consoles me with His love when I am anxious is so comforting. I hope it is comforting to the other moms who are so uncertain of their children's future because of the threat of the disease that they have. We just have to keep taking it one day at a time and keep leaning on God.

Friday, May 18, 2007 10:48 AM CDT

Good News! Sara Mae got off the respirator on Sunday and may be able to go home tomorrow! Thank you for your prayers. The docs are going to try to switch her from IV meds to oral meds so that she can go home.

This week has been a challenge with Alex's behavior that is why I haven't updated in a few days. I know that I just need to be consistent.

Alex knows that I pray to God for wisdom and I tell him that I pray that we will have a better day. This morning he came into my room while I was making my bed and he said "mommy, I hope you prayed to God that we would have a better day today." I almost started laughing! I told him that I had and that maybe he should pray too.

Alex has neuro-psychological testing on Monday. Since neuroblastoma originates in the central nervous system, then the sympathetic nervous system, THEN attaches itself to an adrenal gland, THEN to major organs,this testing is important for Alex's school records so that he can receive special services should they be necessary. I think they test cognitive, behavioral, developmental and social skills. We are so thankful for all the help we are getting. Alex will be in a special needs preschool next year and hopefully by kindergarten he will be mainstreamed.

Everyone that has evaluated him so far has told us that he is very smart and will catch up quickly on whatever he is lacking. I think all of the hard work is paying off!

Thanks for checking in on us.

Monday, May 14, 2007 7:46 AM CDT

Good Morning Everyone,

I hope all the Mom's reading this had a wonderful mothers day. We had to lay low because Alex has a pretty bad cough and runny nose. I was just happy not to be in the hospital. I am so thankful that I got to spend Mother's Day with Alex here on this earth.

I called my friend Katherine yesterday. She spent Mother's Day in the PICU with Sara Mae. However, they were anticipating taking Sara Mae off of the ventilator. Her blood pressure is holding steady without meds. In spite of all Katherine and Eli have been through this week, she sounded pretty good. I felt bad for Katherine because she has not seen her other two girls in a week.

This morning I was listening to a program and the guest was a woman who at the age of 15 lost her sight. She was talking about how difficult it was for her mother to watch her carry this burden of going blind. She talked about the fact that God's grace is sufficient. She said that she believes that God has given her mother what she calls "spectators grace". As a mom it is so hard to watch your child suffer, or struggle but we can count on God's grace to get us through it. This speaker also talked about how we often think...."if my child was healed, then....or.....if my husband/wife would just.....if we had more money.......if my child wasn't so strong-willed." (I hear ya on that one!) The point is, the circumstances don't have to change for God's grace to take over. I'm still learning that lesson everyday.

We know several families who are facing such difficulties right now, and even though they are struggling, they are really trying to depend on God's grace to get them through.
Please keep these families in your prayers. My heart aches for them.

Well, Alex is awake and my day is full of fun activities.....like laundry :)

Friday, May 11, 2007 7:48 AM CDT

Hi Everyone,

Alex's temp has finally returned to normal. The cough has gotten worse. His lungs are clear, but boy does he have a wet cough. Needless to say, we will be lying low for a while again. One step forward, two steps back.

Sara Mae is still in critical condition. The docs think the source of her infection was from a sinus infection. I don't know about you, but that makes me say WOW! Children that have had BMT's look normal on the outside as they heal, but their little bodies are so fragile on the inside. Here we are in mid-May, past cold and flu season and Sara Mae and Alex both have upper respritory infections -- incredible.

I have talked with so many moms in my situation that have said it is such a challenge not to be worried about every little sneeze and cough.

My friend Faye in North Carolina sent me a verse last week from Zephaniah 3:17 "The Lord your God is in your midst, A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy."

I went to a choir/orchestra concert on Sunday night and the very first verse read was Zepheniah 3:17. This week, the Lord has really quited me with his love. With all of the hospital and doctors visits and craziness surrounding us this week, it would have been easy to stayed discouraged, but I felt quited by God's love and strength.

Please continue to pray for Sara Mae and her parents. Eli and Katherine are EXHAUSTED. Also, another family who keeps in touch with us through our website is facing a relapse of neuroblastoma. I hear Nick's mother's anguish as she struggles to understand and yet be strong for her child. Nick is an incredible teenager who just keeps living life. Most of us as parents say over and over again how our children teach us such lessons of faith and trust in the way they handle their illness.

Thanks for checking on us. I'll keep you posted.

Wednesday, May 9, 2007 2:18 AM CDT

Hi All,

It is 3:18 a.m. Wednesday morning. We went to the pediatricians office at about 5:00 p.m. on Tuesday because Alex had woke up with a sore throat and cough. We did not think it was necessary to go to clinic. The pediatrician diagnosed him with croupe and told me what to do. We got home and around 9:00 p.m. Alex started with a low-grade fever. We just got home for the ER where they administered IV anibiotics. I thought cold and flu season was behind us.......

Believe it or not, it was encouraging to go to the ER. We saw many familiar faces and one of the residents that took care of Alex during transplant was so excited to see how big he has gotten.

Sara Mae is still on the respirator. They are trying to take her off of the meds that keep her blood pressure stable to see if she will hold her own.

I'll keep you posted. Thank you for your faithful prayers.

Monday, May 7, 2007 1:23 PM CDT

Hi Everyone,

When we arrived at clinic this morning I called over to the PICU to check on Sara Mae. She is still on the ventilator, but they have taken her off of one of the meds to keep her blood pressure up. Katherine said that Sara Mae is looking a little better. Tests have confirmed that she also has a build-up of fluid in her lungs. The docs are going to give her some meds to try to fix that. I'll keep you posted. Thanks for your prayers.

As for Alex's platelet level -- he is at a big 9!! That is still dangerously low (150-400 is normal) but it is better than 6. His red cells were 11.5 (normal). However, the white count is still down in the fours (6.0 -11 is normal) Because cold and flu season are over, we can take him places, but because of the mediport.....need I say more?

After a 2 hour appointment at clinic we had an appointment in radiation for a check-up. We waited 2 hours and saw the doctor for 5 minutes. I timed it, it really was a 5 minute appointment. :) We always take plenty with us to keep Alex busy and fed. The doctors are all pleased with his progress.

Alex's next scans are scheduled for June 4th. If we can keep him from getting a virus right before scans, we may be able to hold off for 6 months between scans. For the past year, everytime Alex has had scans, he has had an infection so the scans don't come out completely positive. We need what Dr. Villella calls a "stone cold" positive result this time so that we can move the scans farther out.

It seems like the procedures are getting fewer and farther between. That is exciting and something to be thankful for because of where we have been. However, we always remain on guard. A teenage boy that we know of with neuroblastoma just had clear scans in January and he has relapsed in several places. His mom said their worst fear just came true. We are just trying to let the troubles of the day be sufficient for the day. You could drive yourself crazy with the "what ifs".

Katherine told me yesterday that she is so scared and that she can't find the words to pray. I reminded her that it's ok not to have the words to pray because the Holy Spirit intervenes for us. God knows that her heart is in anguish over her child suffering. It is such a helpless feeling to see a child on a ventilator. Sara Mae was so uncomfortable yesterday. Tears kept coming and she would try to point at where she was hurting.

Again, please keep them in your prayers.

Sunday, May 6, 2007 4:44 PM CDT

Hi Everyone--

Please pray for Sara Mae. Sara's Mae's mother called me around lunch time today because Sara Mae is in the PICU and on a ventilator. Craig and I felt a pressing need to go and be with Katherine and Eli. Right before we got to the hospital, Katherine and Eli signed a DNR form. (Do Not Resessitate)

It was so hard to see another one of Alex's friends in such a horrible state. Alex has always been very close to Sara Mae. There were tubes everywhere. I walked over to Sara Mae and said "hey baby doll" and she opened her eyes and slightly lifted her hand. I told her she needed to get better soon so that Alex could come play in her playhouse.

Craig and I didn't hesitate to go to the hospital, but normally, we start getting very anxious about going into such an intense place. God really upheld us with strength and peace.

When we first walked into the room it was very sad because Eli was stroking Sara Mae's hair and crying. Sara Mae isn't completely unconsious, so she gets kind of agitated with pain.

Please pray for them.

Sunday, April 29, 2007 7:43 PM CDT

Hi Everyone,

The visit to the ENT went really well. When the doctor looked in Alex's ear he could see a small scratch inside the canal. He said because Alex's platelets are so low, the scratch bled for a while and that is why his ear canal was full of dry blood. Whew!! The ENT also went over the results of a CT scan that he had ordered as part of the quarterly scans. The scan showed in detail all of the parts of both of Alex's ears. The ENT said that Alex's cochlears are formed perfectly. YEAH!! It was good to get such a good report.

It looks like the hearing aids are going to be a little HM over the summer. The tubing that connects the ear mold to the electronic part of the hearing aid collects little bubbles of moisture. If the moisture gets into the electronic part of the aid, it will ruin it. Never fear though, we have been supplied with the tools to take care of the problem. Craig has gotten really good at replacing the tubing. Like everything else, it just becomes part of our life.

I talked to Sara Mae's mom on Saturday and she told me that they were at clinic on Tuesday and the nurses told them Ohio's cold and flu season is officially over!! YEAH!!! Please pray for Sara Mae, she is recovering from a broken leg and her mom was telling me because of the steroids, Sara Mae has not grown in a year and a half.

Please pray for Alex. Not only does he have some social adjustments to make, but the hearing aids amplify background noise when we are in public places. When we go to the doctors, or to speech, Alex gets very agitated and says that everything is too loud. He then starts acting out. Craig and I need wisdom as to how to handle Alex, especially since when he acts out he often gets very physical.

On Friday, we are taking Alex to Olmsted Falls Preschool to be observed. I can't believe he is going to preschool in the Fall. Yet another milestone and a reason to be thankful.

Next Monday we go to clinic for a platelet check and then to radiation for a check-up and to review scans. I think Alex's nurse will also be giving us the dates for his June scans.

As always, thank you for your prayers. Alex didn't have one stay in the hospital over cold and flu season. Considering our record over the past couple of years, I would say that is a miracle!!

Well, it's bedtime, so I must go......

Monday, April 23, 2007 10:05 PM CDT

Hi Everyone,

I hope you like the picture of Alex in his new jeep! He loves riding around in it.

Alex woke up this morning and his eyes and ear were swollen. At first I thought it was allergies, but after looking at it most of the day, Craig and I came to the conclusion that it is sun burn. If that wasn't enough, when I went to put his hearing aids in, his one ear canal was plugged up with dried blood. I cleaned it out and examined his ear and from what I could see, the blood was coming from inside his ear. There was no visible cut or scratch. There is never a dull moment.

Yesterday my friend Peggy called to tell me that our friend Linda Olson had passed away on Friday from lung cancer. Linda never smoked a day in her life. She was diagnosed around the time Alex was going through chemo. Linda had just had clear scans in January. I know that Linda is with the Lord, but Craig and I are still saddened by her death. Linda and I served together as deaconesses at our church in Virginia. She had a wonderful sense of humor and a gentle spirit. Linda would send me a note every now and then telling me that she was keeping up with Alex's website and that she and her husband Hal were praying for Alex. Linda said we were an inspiration to her. Yet, from what I hear, Linda never complained about her infirmities. According to her website, her family sang hymns and prayed with her in her last moments. That is an inspiration to us. Her family has truly lived out their faith in the midst of this trial.

Again, I am sobered by the reality of what a horrible disease cancer is.

I've made an appointment for Alex to see the ENT on Friday afternoon, hopefully we will get some answers.

Saturday, April 21, 2007 6:21 PM CDT

Hi Everyone,

It is finally sunny and warm here in Cleveland and Alex was able to go outside riding on his jeep this morning. I took pictures.......I'll have to share them later.

I think Alex is going to need to be with other children in small doses. He has a hard time sharing and gets a little too aggressive at times. It's like he needs to learn to play with kids his age. Sometimes he does have normal kid-like reaction, but sometimes he gets too frustrated, so we have to be careful he doesn't hurt himself or someone else.

Craig and I are also a nervous wreck watching him play outside because of the low platelet situation. Any kind of bump or fall is no small thing. Alex wears a helmet, so at least his head is protected. It is so hard not to be over protective.

Thanks for checking in on us.

Tuesday, April 17, 2007 9:51 AM CDT

Hi Everyone,
We are still waiting for the warm weather....along with everyone else......

Alex lost his first tooth. He looks so cute! Alex's face is covered in petechia (small hemmorages) because he was screaming and crying over being put in time-out for being naughty. He got frustrated and started grabbing at his face and surprise, he looks like Rocky! He looked so good last week despite the low platelets. This week he is covered in what we call "boy bruises". He was running in the kitchen over the weekend and whacked his head on the side of the chair......nice big bruise. Those 6,000 platelets probably dropped in half!

Craig talked to a nurse at clinic last week about cold and flu season. She said c/f season wasn't quite over, so we are being cautious again. As I said last week, his white count had dropped below normal.

Dr. Villella asked if Alex had a bike. We told him no because he had previously told us that Alex's platelets were too low to risk him falling off a bike and injuring himself. That's ok, Mommy and Daddy bought Alex a John Deere tractor (or as Alex says John Geer tractor) for his birthday. The tractor was part birthday present and part incentive for using the potty. We also had the conversation with Dr V about playgrounds, etc. Alex shouldn't be climbing, jumping off of, etc., playground equipment. Ya know, all the stuff that active boys like to do! :) We'll stear clear of the parks for a while. I have other fun things in mind though. We'll go watch trains at Grand Pacific Junction, blow bubbles, play with sidewalk chalk and drive around in that jeep! We are so thankful for the time we have with Alex.

We are still facing many challenges right now. We are daily reminded of how fragile life is when we hear about a relapse or death of a little one. We are daily trying to figure out what seems to be a never ending pile of medical statements and bills and letters from collections agencies. Most of the bills have to work their way through the system, letters of dispute have to be written.....it's crazy. There are also other means of stress that we are having to face right now that we are really struggling with.

God is reminding me daily to have faith and just believe that he hasn't left us. Sometimes it feels like he is silent because he wants us to wait on him. I told Craig I feel like I can relate to Alex's reactions when he is in time-out because it is so hard to wait. Somedays fear of the unknown is real uncomfortable. Sometimes I have felt like we are being punished for something, but then this morning I was reading Streams in the Desert. The passage was talking about how in order to make a beautiful diamond, the jeweler has to strike it with a blow of a hammer in order to bring it to its most perfect shape. "Streams" went on to say...."Soemtimes, in the same way, God lets a stinging blow fall on your life. You bleed, feeling the pain, and your soul cries out in agony. At first you think the blow is an appalling mistake. But it is not, for you are the most precious jewel in the world to God. And He is the most skilled stonecutter in the universe.

"Someday you are to be a jewel adorning the crown fo the King. As you lie in His hand now, He knows just how to deal with you. Not one blow will be permitted to fall on your apprehensive soul except what the love of God allows. And you may be assured that from the depths of the experience, you will see untold blessings, and spiritual enrichment you have never before imagined."

I have to keep reading that over and over again and let it sink in because I don't always understand why. My hope is that others that read this site who are struggling will find comfort in the fact that they are not alone. It's a hard trial to endure and, frankly, it stinks, but we have to remind each other that God never leaves us or forsakes us even if our faith waivers.

Sorry for going on and on today, I have been hesitant to talk about the fact that we are still struggling because for the most part Alex is doing well.

Thanks for your prayers.....I'll keep you posted.

Tuesday, April 10, 2007 8:31 AM CDT

Just a quick update for now.

We went to clinic yesterday and Alex's platelets went down to six. His white count is below normal too. Normal is 6 - 11.5, Alex's white cell count is 4.6. The white cells help your body fight off infection. We'll continue to be careful where we take Alex for a little while longer.

We were suppose to go away for a few days this week, but due to circumstances beyond our control we are unable to go. Oh well, the weather isn't all that great anyway.

Craig asked Dr. Villella if Alex's scans would be moved to every six months. Dr. Villella said that the study calls for the scans to be moved to every six months. However, he feels that because the scans have never been "stone cold negative" the scans should stay on a three month schedule for now. There have always been some spots on the scans that were "questionable", but the opinions of the docs have always been that it is not disease. Neuroblastoma is a very tricky/sneaky disease, so I think we would all rather be safe than sorry and keep Alex on a three month scan schedule.

Alex is ready for breakfast, so I should go for now.

Thursday, April 5, 2007 9:06 AM CDT

Hi Everyone,

Sorry I haven't updated in a while, we have been a litte busy.

Five years ago today we brought Alex home from the hospital. The weather was much the same as it is today....SNOWING!! We have about two inches of snow on the ground. I always say that winter lasts from October to June here in Cleveland.

Alex reached a couple of milestones over the weekend. He turned 5!! YEAH!!! We traveled to Pennsylvania to my sister Sue's house. She decorated the kitchen and dining room. Alex was SO excited! It was nice to get away for couple of days. Alex and I have had cabin fever. Craig calls us "loco"! While we were in PA, we went to a stage show on the PSU campus called "Thomas Saves the Day". It was so cute. The train engines were so big that a person drove them around the stage! Alex did well. All the children were mesmerized by the show. Only one time did he say that it was too loud. This was his first outing since cold and flu season began, so I was afraid it would be too much, but he did pretty well. I think it is going to take some time to get use to wearing his hearing aids out in public where it can be quite loud.

On to the other milestone.....Alex has his first loose tooth!! It is one of the front bottom teeth. Actually, it is the first baby tooth that came in, and it is the first baby tooth to fall out! It is so loose right now!!

Craig and I have a calendar in our bathroom that we flip over every morning. On April 1, Alex's birthday, I didn't take the time to look at it because I was packing all of our stuff for our trip to Pennsylvania. I looked at it last night and the verse was "This is the day the Lord has made, let us rejoice and be glad in it." I almost cried. First, because Alex's fifth birthday gave us lots of reasons to rejoice. Second, right before Alex was diagnosed, the first song he ever learned was "This is the Day".

Well, I need to go unpack, do laundry and try to stay warm in this snowy weather! SNOW IN APRIL!!! It's crazy!!

Tuesday, March 27, 2007 8:19 AM CDT

Sorry I haven't updated in a while. I think we are still trying to get into some kind of routine. Last week was a little off balance. Between Alex and me, we were suppose to have three doctors appointments -- two of them ended up getting rescheduled. Then on Friday, my parents came for a visit.

ANYWHO! We had an unscheduled semi-emergency trip to clinic yesterday. It all started Sunday when Alex (aka Mr. Low Platelets) fell in the shower. He wacked his jaw on the faucet, which also caused him to bite the inside of his cheek. The inside of his mouth was bleeding -- that is NOT GOOD!! I got him out of the shower ASAP and assessed the damage. Craig helped me get an ice pack and then I decided because the bleeding was pretty rapid we should give him a dose of the clotting medication. Although Alex had a pretty nasty bruise on his jaw, we decided to go outside since it was in the 70's!! Spring has begun to appear here in Cleveland! YEAH!! Craig and I saw a report on the news yesterday that said the flu is still wide-spread over Ohio and is expected to dissipate sometime in mid-April.

Being that it was in the 70's again yesterday, Alex and I went out in the backyard to play. We were playing catch and Alex said he was getting hot and that he wanted to go inside to take a break. He ate a popsicle and then asked if we could go back outside and blow bubbles. When Alex got outside, he went to step out onto the first step and went HEAD FIRST down all six steps and landed on the concrete patio. He bruised his shoulder, forearm and shin. I can't believe he didn't hit his head. We came inside and called clinic because he had a hemotoma on his shin. Everytime Alex falls, he gets a hemotoma (a blod clot). Because he had one on his chin the day before and was actively bleeding and needed medication, I felt it necessary to inform clinic.

Long story short, Dr. Villella wanted us to come in to make sure Alex didn't have any internal bleeding. Parents of normal children worry about broken bones, we worry about internal bleeding. The funny thing about the whole incident is that Alex said he was a little sore and he cried, but then went on like nothing happened. Dr. Villella checked his platelet level and I am happy to report they were a big 9! We were all joking about the fact that if he hadn't taken two nasty falls, his platetlets would probably be in the double digits!! I really think I should seriously consider wrapping him in bubble wrap for a while!!

Sunday is Alex's fifth birthday. This is such a milestone for us. Alex is alive and in remission. It's hard to believe we have been doing this "cancer thing" for half of his life.

God has taught us so much through this. We are thankful for each day we have with Alex. Alex has taught us a lot too. He is so full of joy and has such a great sense of humor. Alex loves to eat by candle light at dinner, just because.....He also likes to have sleepovers in the family room on Friday nights. We get our air mattresses out, order take-out and watch Hannah Montana and Zach and Cody on Disney Channel.

There is still the temptation to worry and to fear. There are a lot of unknowns. So many around us aren't doing as physically well as Alex. Sometimes that makes me feel so guilty. We have other obstacles to overcome, but we are learning to trust God to see us through them.

I think Alex and I are going to attempt to go outside again today and enjoy the nice weather. (without incident) I hear there is snow in the forecast on his birthday!! Before we go outside, I think I'll look to see if we have any bubble wrap in the house........

Monday, March 12, 2007 3:53 PM CDT

GOOD NEWS! Alex had his scans this morning and then we went to clinic. Dr. Villella came in the exam room and told us that he had the preliminary results and they looked good. The PET scan did light up around lymph nodes in his chest like it always does. That is because for the last year, everytime Alex has had scans he also had a really bad cold.

Alex's platelets were 6 today. Dr. Villella explained to us that Alex may never have a normal platelet level. He expects Alex's platelets to increase at some point. However, there is scar tissue that has taken the place of his bone marrow so there is not a lot of room for the platelets to grow. Hopefully as Alex grows, the area where the bone marrow is will expand and there will be more room for healthy marrow to grow and thus produce more platelets.

Dr. Villella will be calling us tomorrow with final results from the scans. We will also find out whether or not Alex will remain on a quarterly scan cycle. It is possible that he will only have to have scans twice a year.

God again was gracious to us and sustained us through the day. Thank you for your prayers.

Tuesday, March 6, 2007 1:19 PM CST

Well it's official, Alex has an ear infection on top of the cold. I called clinic this morning and they wanted to see him ASAP. Our visit was short, and they didn't even do a blood draw. Of course Alex is back on an antibiotic. Can you tell I am a little frustrated? He went about 7 weeks without being on an antibiotic.

Scans are still scheduled for Monday. Please keep us in your prayers. Hopefully the antibiotic will clear the illness out of his system so that there are no false readings on the scans.

I'll keep you posted.

Monday, March 5, 2007 6:49 PM CST

Hi Everyone,

Alex woke up late Saturday night with a cold. I thought that he was getting sick at the end of last week, but then he seemed ok.

I called clinic today to let them know that Alex is sick and Ann wants me to page her in the morning and let her know how Alex is feeling. Ann said we may have to go in to clinic tomorrow and that she would talk to Dr. Villella about whether or not we should reschedule the scans.

Please pray that Alex gets better. We just want to get the scans over with.

Also, please pray for Mitchel. His parents took him back to New York (they live in Oklahoma) because his scans look a little suspicious.

I'll keep you updated as to whether or not we end up going to clinic tomorrow. Thanks for the prayers.

Thursday, March 1, 2007 8:13 PM CST

The picture of Alex in the snow was taken back in January. (about 20 or more inches of snow ago!!)

Alex had only one appointment to go to this week -- speech. He is working so hard. His "s" sounds are a little "slushy" at times, but he perseveres until they sound perfect.

One month from today Alex is going to be 5 years old. I can hardly believe it. Alex was diagnosed when he was 2 1/2. It's hard to believe we have been on this journey for half of Alex's life. Craig and I are so thankful that he is still with us. It seems like he gets more and more mature with each passing day.

We are so anxious for the warm weather to come around. Of course in Cleveland warm weather is anything above 20 degrees!! Alex keeps talking about playing in his backyard. He wants to have Shelby, Sammy, Danielle, Stephen and Luke over to play. He also keeps talking about going to see his friend Sara Mae.

Only 11 more days and Alex has scans. In the past three weeks, we have been made aware of 5 neuroblastoma relapses. It's quite sobering. I know that we could find ourselves in a similar situation and yet I'm learning to take it one day at a time -- letting the days troubles be sufficient for the day. I cherish every moment God allows me to have with Alex........playing the Cooties game, playing trains and sitting in his Lighting McQueen tent.

Last week Craig and I were talking about how instead of asking God why, we are really asking him what he wants us to learn from all of this. What is God's will for our family? Sometimes that is hard to ask because our circumstances haven't changed all that much. Alex is in remission, but we face other challenges. Some I can write about, others I can't.

My hope is that we will be able to comfort and encourage other families who have been thrown into the world of cancer. So, on one hand we have to take things one day at a time, but we also have to look at what God's will for us may be in the future. I don't know about you, but that makes me a little dizzy! (ha ha)

I'm sure we will be experiencing the pre-scan jitters next weekend, so please keep us in your prayers.

Thursday, February 22, 2007 7:16 AM CST

Is is Spring yet? Here in Cleveland, we have been sitting in about 20 inches of snow. Right now the snow is starting to melt and there are floods and roofs leaking everywhere!

Sorry it's been a while since an update. We've had several doctors appointments, i.e., clinic, hearing, speech. Not to mention a leaking roof and I am trying to squeeze in a root canal. :) We also managed to squeeze in potty training! YEAH!!

Alex is doing great. He's playing, has lots of energy and we are working every day to improve his speech. Alex had a speech and audiology appointment yesterday. Lindsay (his speech therapist) said she could tell we had been working on the "th" sounds because he sounded much better. Alex was so funny......he shook his head yes and said "yeah, I've been doing my homework". Ellen (his audiologist) turned up his hearing aids to a level four and "tweeked" the high pitch volume. Four is the highest level that his hearing aids can be turned up to. It's hard to believe how severe his hearing loss is.

I was observing him at speech yesterday and it was so hard not to crack up laughing. First he said to Lindsay "that's a nice shirt you have there". Then, the whole time they were working through flash cards he is wiggling in his seat. His legs were going back and forth like he's running in place, but he stays in his seat the entire time!

We are having many more moments of joy. I must admit even the moments of joy can be scary -- almost too good to be true. I say that mainly because we have heard of a fifth neuroblastoma relapse. God is really working on me because peace is starting to sweep over the fear. We know that all we can do is let the days trouble be sufficient for the day. Craig said this morning that we just need to look at today, and today only.

Please pray for our friend Mitchel. He is being treated with 3F8 antibodies in New York City at Sloan Kettering. Mitchel had an MiBG last week and there are two suspicious spots on it. The MiBG is used specifically to detect neuroblastoma. Mitchel lives in Oklahoma and he will return to New York in a couple of weeks with his parents for more testing. Please pray for this family and the other children who are being treated with the antibodies. The antibodies are a successful way of treating these children, but it is an extremely painful procedure.

Congress is about to cut funding for pediatric cancer research. If it were not for research and clinical studies, treatment for neuroblastoma would not be what it is today. I am writing a letter to my Senator and Congressman urging them not to allow this funding to be cut. Please pray that people will take action on behalf of all cancer patients.

Alex is awake, so my day is starting! Talk to you soon.

Monday, February 12, 2007 12:05 AM CST

Hi Everyone,

Good news! Alex's platelets are 14! Double digits -- YEAH!! However his ANC (Absolute Nuetraphil Count) is 640. Anything below 1000 means he is vulnerable to picking up illness. His white count was 4.8. Again, an indicator that Alex's immune system is "less than stellar". To me it is confirmation that we are doing the right thing by staying out of harms way during cold and flu season. His red cells were 11.4 which is normal.

Alex was showing off his hearing aids at clinic today. He was so cute.

I was cleaning the bathroom the other day and Alex, out of no where, said to me that he was so glad to have his hearing aids because he was having a hard time understanding his friends. I almost cried. He was so sweet and matter-of-fact. Truly, we are so thankful that the Lord has given Alex the grace to accept the hearing aids. Alex is so glad to be able to hear.

Please keep the kids suffering from these horrible diseases
in your prayers. In the past two weeks we have heard of four neuroblatoma relapses. My heart aches for these families.

Thursday, February 1, 2007 4:49 PM CST

Hi Everyone......

Alex is still doing well with the hearing aids. He saved his chips all last week and earned a Lightening McQueen tent. He is so funny! Alex told Craig and I last week that if any of his friends ask him "Alex, what are those?" He said he is going to say "THESE are my hearing aids!" He said it like he was so proud! I know Craig and I are really proud of him.

We have had two appointments with the speech therapist so far. The first appointment was to evaluate where his speech level is. Alex was also tested on his ability to understand concepts. He scored higher than an average 4 and 3/4 year old. The area of concern for us is the sounds of th, x, f and s. Because Alex can't hear those sounds when he speaks, he can't pronounce them. I'm so thankful that he can go to speech. We were given "homework" -- just worksheets with words starting and ending in "th". It's actually an enjoyable thing to do with Alex.

He is so funny to watch during his speech session. Even though he is sitting, his feet and legs are moving the whole time -- like he's running. There was a student observing his therapist and he asked if the student was the therapists friend. The therapist said yes. They were about half way through his session and he looked at the therapist and said "that's a nice friend ya got there."

Even though I still struggle with fear of a possible relapse, I am finding more and more reasons to be thankful. The hearing aids are so much easier than a broviac and chemo.

We are truly counting our blessings right now. We treasure every moment with Alex. We love his full head of hair, his sense of humor and curious nature.

FYI -- Alex's next scans are scheduled for March 12.

Thursday, January 25, 2007 7:32 AM CST

Good Morning,

Alex has been doing great with his hearing aids. He has kept them in and on since Monday. I really think God has given him the grace to handle the hearing aids. Dr. K said the fact that Alex has not been taking the hearing aids out is HUGE!! She said that most kids find them very hard to get use to.

We went to the speech pathologist yesterday and she confirmed that Alex does need to work on some things. Mainly "th" "f" "x" sounds and a couple of concepts like the difference between things that are "first" and "last". On some of the concept testing for a child his age he should have scored around 10, however, he scored anywhere from a 14 to as high as 20!

I really think that if we work a little over the next few months, Alex will catch up quickly and be able to be mainstreamed in Kindergarten by the time he is six.

Thanks for your prayers.

Monday, January 22, 2007 3:52 PM CST

Hi Everyone,

We got up early and the three of us went to pick up Alex's hearing aids. Alex was so sweet. He wanted to take his stuffed Mickey Mouse's with him to the doctor. He also wore his Mickey Mouse ears. (he insists they help him to hear better)

Craig and I went right along with it. In a way it's humorous, but as his mommy and daddy, we felt kind of sad. Craig and I had prayed for Alex this morning. This is a big adjustment for him. It's not as bad as the cancer or chemo, but it is hard.

The audiologist explained to us how the hearing aids work, how to clean them and how to change the batteries. Alex was trying to keep himself "busy" with other things, he was also hugging and kissing us a lot.

When the hearing aids were placed in his ears and turned on, his eyes got huge. We thought "great, he can hear... this is good." Then he started to cry and said "I can't wear these, I want them out of my ears." It wasn't a temper tantrum, he was sobbing. It took everything within me not to start crying. The audiologist said that things may sound really loud to him at first and that it would take time to get use to them. She then removed them from his ears and adjusted the volume down one notch. We will return to her office in two weeks to do another hearing test and then try to adjust the volume up again.

On our way home he asked if I would walk with him out in the snow. The three of us took a walk around the block in the snow.

So far today he is doing well with the hearing aids. We have started the reward system, which I think will help. He is touching his ears a lot. As a mom, I must admit it's sad to have to watch him go through so many hard things and not be able to fix it. Craig and I have just decided we are going to love him through this too........

Friday, January 19, 2007 8:58 AM CST

Hi Everyone --

We received a call a couple of days ago from the audiologist. Alex's hearing aids are in. We have an appointment on Monday and Alex will be fitted with the hearing aids.

I've spent a couple of days this week preparing Alex. Dr. K. has been a great help. We just give him a little information at a time and we are treating all of this matter-of-factly. Dr. K. helped us come up with a reward system using poker chips and a chart. This system will hopefully help Alex keep the hearing aids in until he gets use to them. I think the reward system will be a great motivator for Alex.

More later.....

Monday, January 15, 2007 4:03 PM CST

Hi Everyone --

Just a quick update.......

We had clinic today. Alex's platelets are a big 5. It was disappointing, but not surprising because he just had a whopping dose of antibiotics. The antibiotics tend to supress all of his blood counts. Doctor Villella talked to us about a new drug that is coming out that would boost platelets, but there are pros and cons to that. I guess we'll cross that bridge when we come to it.

We also had an appointment for a radiation follow-up. Alex passed with flying colors. The doctor reviewed the scans from last month with us.

Sara Mae is in the hospital again. She got a cold which resulted in a fever, which results in a hospital stay. Sara Mae isn't out all that often, but she has a sister who is in school, so that is probably where she got the cold. I'm convinced that we are doing the right thing by keeping Alex out of harms way during cold and flu season.

When kids like Sara Mae and Alex get a cold/fever, the result can be an infection in their central-lines. Some days it feels like the walls are closing in on us, but it's better than sitting in the hospital.

Craig had the day off so he came to clinic with us. I cannot tell you what a difference that makes to Alex. (and me too!) We love being together. I am so thankful that we have grown closer as a family -- it's kinda like we are the three muskateers.......

The hearing aids should be in sometime next week.....I'll let ya know......

Wednesday, January 10, 2007 8:24 AM CST

Thanks for the prayers everyone. Alex was a real trooper while being fitted for his hearing aids. We took a new video with us, so that helped him sit really still. He also earned a new train for obeying everything the audiologist asked him to do. (even though he was a little grumpy from staying up too late with Daddy watching the National Championship game)

First she put a little ear plug in his ear and then she squirted a playdough like substance in his ear. That substance had to stay in his ear until it hardened. The whole process took about a half hour.

Alex still isn't too thrilled with this whole thing. We aren't even sure he quite understands the concept of the hearing aids. The audiologist helped to explain things further to him. Alex was allowed to pick the color of his hearing aids. Craig and I would have chosen the brown because they would have blended in with his hair and would stick out less. HOWEVER, Alex chose red. Craig kept trying to convince him otherwise, but Alex was determined to choose the red. I said let him choose the red. For those of you who have seen the Cars movie, you know that the main character is red with a lightening bolt on the side. Alex pretends to be a race car sometimes and he wanted red hearing aids to match Lightening McQueen.

We talked with the audiologist for some time yesterday. We discussed with her the future possibility of Alex being able to wear the hearing aids that sit down in the ear canal. She said he may never be able to wear those because of the kind of hearing loss he has. I was a little sad to hear that. But then again, technology may be more advanced in the future and he may be able to have the hearing aids that are less bulky. I realize this is a mothers heart speaking.

It has snowed some here and I promised Alex we would go out and walk around in the snow. Believe it or not, he's never played in the snow because he's always been too sick to enjoy it.

We have an appointment next week with the speech pathologist......I'll keep you updated. As always, thanks for your prayers. It's easy to get discouraged and tired of this process. We know it is the prayers of others that keeps us sustained and chugging along.

Monday, January 8, 2007 8:45 AM CST

Yikes! What a kooky week last week was! Lots of phone calls to doctors and our new insurance company. Our previous insurance company pulled out of NE Ohio, so we are having to do some work to get adjusted to the new company. So far, so good.

As soon as we found out that Alex needed hearing aids, I called the behavioral therapist. She is such a blessing. Before Dr. K. even called me back, she called the audiologist and spoke with her about how we could best transition Alex into yet another thing that is a permenant change in his life.

When Dr. K. called me, she was so encouraging. She gave me a pep talk and some great suggestions on how to help Alex with the transition. This is just one of those situations that we know God has allowed. We know there is a purpose. I must admit, it is hard to accept at first. With each of the challenges we have faced, Craig and I have to acknowledge that it just plain stinks somedays. Our child is different. No, he is not the only one, but as a mom it is pure anguish to think of your child possibly being rejected because he is different.

After talking with Craig and wrestling with God for a little bit, I realized Alex has survived worse. (for instance -- the bone marrow transplant) God has been gracious and merciful to see us through so far. Dr. K. reminded me that there is a purpose for everything.

Please pray for Alex tomorrow morning. He is having the mold for his hearing aids made. It is a lengthy, invasive process. We have a plan on how to get him through it, but he is a busy boy and it is a long time to ask a little guy to sit still.

I'll let ya know how it goes! :)

Wednesday, January 3, 2007 8:21 PM CST

Hi Everyone,

Today we took Alex for a second audiology appointment. The second test confirmed the first test. Alex needs hearing aids. He has border-line severe high pitch hearing loss in both ears. His speech is being effected by the hearing loss, so we will also be visiting a speech pathologist. We have an appointment next Tuesday to have Alex's ears fitted for the hearing aids.

We had a talk with him tonight to explain to him what is happening. He said he didn't want to wear hearing aids. He said that he would just wear his Mickey Mouse ears and that would help him to hear better. I have a feeling we may have a bit of a challenge on our hands.

I must admit that Craig and I were a little sad after the doctors visit. However, we would much rather have Alex here with us with hearing aids than the alternative.......

I hope you like the new web picture. We finally got around to updating the pictures in the photo album, so take a look!!

More later.....

Tuesday, January 2, 2007 7:52 AM CST

Happy New Year!

We hope everyone had a Merry Christmas and Happy New Year.

We had a nice Christmas. We woke up Christmas morning and Alex opened his presents from Santa. Of course there was a little something having to do with trains under the tree! He got a Pennsylvania passenger car -- something he really wanted.

After Alex opened his gifts, we packed the car and went to my sister's house in PA. It was nice to visit with family and get away for a little while. I need to download some pictures of our trip. Craig and Uncle Mike bundled Alex up and took him to watch trains go around the Horseshoe Curve in Altoona. My sister and I had a girls day out and went to a movie. We also went to my parents house for a visit.

We spent a quiet New Year's at home. The three of us had a little party. I bought a paper table cloth and colorful plates, napkins and cups. (of course, there were noise makers too!) Alex fell asleep right before midnight. :)

It was so nice having Craig home for several days. We are sad to see him go back to work. If only money did grow on trees, then Daddy wouldn't have to go to work everyday!!

Craig and I talked several times about how very thankful we are that God has given us more time with Alex. He is so precious to us. Even something as simple as playing Hungry Hippos is precious time to us. Alex and Craig played trains for hours over the past couple of days. I know Craig had some insurance paperwork to do, but he just couldn't resist spending time with Alex. This may sound hokey, but my heart felt so full just watching them play.

Alex still has 11 days of the yucky antibiotic to take. He also has an appointment with an ENT and audiologist tomorrow. I'll let you know what the results are as soon as I hear something.

Friday, December 22, 2006 8:08 AM CST

UPDATE: I had to call clinic today because Alex woke up with some pink tenderness under his eyes. The fluid/post-nasal drip will not clear up and I think he is working on a sinus infection. When clinic returned my call, Anne said Dr. Villella said based on Alex's exam on Monday, he thought it was time for more antibiotic. BUMMER -- but at least we won't end up in the ER over Christmas.

Merry Christmas Everyone!

Good news -- Sara Mae got to go home from the hospital yesterday!! Her blood counts have been much better since her surgery. Thank you so much for your prayers.

Alex is doing well and awaiting Christmas day with MUCH anticipation! Craig and I were praying this morning and I was tearing up just thinking about that fact that 2 years ago he was starting to loose his hair after his first chemo treatment. Today he has a full head of beautiful brown hair.

Alex has so much energy that he has worn out three pairs of NEW sweat pants in 10 days. He plays so much on the floor with his trains and cars that his knees end up wearing a hole right through the pants!

I need to have Craig put up some current pictures of Alex. I realized the other day that we never put the Disney World pictures up on the site. Sorry.......

Please pray that Alex continues to be healthy over the Christmas holiday and that we have not unexpected trips to clinic.

I don't remember if I mentioned that Alex was able to get the flu shot on Monday. Kathy (his nurse) strapped an ice pack to his leg and he didn't get a hematoma. Even with platelets of four he didn't even bruise. YEAH!!!

Well Alex is awake so I should sign-off.

From our family to yours, we hope you have a Merry Christmas and Happy New Year!

Monday, December 18, 2006 4:57 PM CST

Hi Everyone,

This will be a short update for now due to a long day at clinic/doctors visit.

Alex's white count dropped from 11.3 to 5.3 -- his red cells were 11.1 and his platelets were only 4.

I took Alex to his hearing test today. He sat still for over an hour and cooperated so well. We have a follow-up appointment with an ENT and another hearing test scheduled.

According to the audiologist, Alex has experienced some hearing loss as a result of the chemo. We will be going for a second test to confirm the findings of today's test. There is a strong possibility that Alex will need hearing aids. He still has fluid in his left ear, so the ENT will address that issue also.

I'm a little tired after a long day at clinic, so I'll sign-off for now.

Thursday, December 14, 2006 8:00 AM CST

Good Morning and good news!! Sara Mae not only made it through the surgery, she didn't spend much time in the PICU! The Lord is so faithful. Thank you for your prayers. I know that her parents are thankful too.

Two years ago Alex was in the hospital and on death's door. Every morning the doctors would come in and tell us what his blood counts were -- it was like they were speaking a foreign language. Everything was so new to us and so scary. At the time I had no idea what we were in store for.

Alex currently has a mediport instead of a broviac. (which is a lot easier to maintain) He is energetic, and best of all, not hooked up to an IV pole.

This morning when I was getting him dressed, he said "it's a wonderful day!" To me that statement is just proof of what a special gift not only Alex is, but all the children who are ill. No matter how sick these kids are, they manage to have the sweetest spirits.

Just when you think you can't deal any longer with the sorrow and exhaustion that a life-threatening illness can have on you as a parent, your child says something oh so sweet, or oh so funny.

Although my heart is heavy at times, especially after I have made a visit to RB2, my heart is also full of gratitude for the special gift of our son. I know parenting is hard and children have a way of pushing our buttons at times; but I beg you, be thankful if God gave you healthy children. Nothing else in this world matters -- no activity, no material item.

Please pray for the families of RB2 who are in the hospital over Christmas. It is really hard to be in the hospital on a holiday. Sure, they try to make it nice, but it is difficult to get anything to eat in the cafeteria because the cafeteria operates with a skelton staff on holidays. We were blessed enough to have friends like Dean and Grace bring us a Christmas dinner. One day I hope we have the opportunity to serve some of the families on RB2 in that way.

Alex needs some breakfast.........gotta go.

Wednesday, December 13, 2006 7:38 AM CST

Good Morning Everyone,

I haven't been updating everyday for a long time. One reason is because there isn't always too much to share since we are not in the hospital as much. Another reason I don't always update on a regular basis is because I've struggled with where we are at times.

Along the way there have been several people who have encouraged me for being so honest about where we are in this journey of ours. There have also been misinterpretations of what I have shared. (either I'm angry at God, or don't have enough faith, or I'm being too negative).

Craig and I have had many a long talk about how thankful we are that God has been so faithful to us in giving us more time with Alex. We marvel at him each and every day -- he brings us such joy. Honestly, we have struggled with what many parents in our situation call "our new normal". We are not "normal". Even trips to the grocery store are carefully planned. Craig reminds me all the time that the Lord, in his sovereignty, is allowing us to experience the emotions, struggles and feelings we are having in order to bring us closer to him.

We walk a fine line regarding Alex's health. On one hand, Alex looks so good and he is FULL (did I say full?) of energy! On the other hand, his immune system is so weak and his platelets so low it is not only dangerous, but scary. I pray for God's wisdom everyday about what to expose or not expose Alex to. I hate keeping him away from his friends, and frankly it is holding him back developmentally. However, if he gets the flu, or pnuemonia it could be fatal.

When there are times that we feel like our life has come to a screeching hault while life seems to be going on for everyone else, God gives me gentle words.

Isaiah 45:3 "I will give you the treasures of darkness."
Sometimes the darkness in our lives is worse, because we cannot even see the web we are weaving or understand what we are doing. Therefore we are unable to see any beauty or any possible good arising from our experience. Yet if we are faithful to forge ahead and 'if we do not give up' (Gal.6:9), someday we will know that the most exquisite work of our lives was done during those days when it was the darkest.

If you seem to be living in deep darkness because God is working in strange and mysterious ways, do not be afraid. Simply go forward in faith and love, never doubting Him. He is watching and will bring goodness and beauty from all of your pain and tears."

Tuesday, December 12, 2006 11:16 AM CST

Hi Everyone,

Thank you for your prayers for Sara Mae. She made it through the surgery. Currently, she is on a ventilator in the PICU. There is still a risk of her bleeding internally, so they need to keep a close watch on her.

Once again God has been gracious to us. We are so happy that Alex is sill free of cancer.

Because his platelet level is currently 5, the doctor isn't sure Alex will be able to get the flu shot this season. That is a little scary. Craig and I have gotten our flu shots, so hopefully we can keep Alex pretty protected.

Alex has clinic on Monday morning and then he has to go for a hearing test. Alex needs the hearing test because he isn't annunciating his words. Although he no longer has an ear infection, his ears remain full of fluid. I have been giving him Sudafed, but it isn't drying the fluid out of his ears. The hearing test is precautionary. Alex had a high dose of cisplatin in his chemotherapy and that could be causing a hearing loss. The fluid in his ears could be exasperating the problem.

My first instinct is that the fluid isn't clearing out of his ears and that maybe he needs tubes to drain the fluid. However, if it is a hearing problem, there is a possibility he would need a hearing aide, or hearing aides. We were told that his hearing could be effected by the chemo early on in the process. We feel this is a minor thing to have to deal with.

I'm concerned that we have to go to a very public doctors office to have the hearing test done. There are going to be sick children in the waiting area, so I am going to have to make Alex wear a mask. Please pray that Alex doesn't get sick before Christmas. We would like to be able to spend Christmas at my sisters house.

Thank you from the bottom of our hearts for your faithful prayers. Two years ago Alex was finishing up his first round of chemo and he was VERY sick. We are so thankful that we are home and that he is in remission!

Friday, December 8, 2006 3:57 PM CST

We just got GOOD NEWS!! Alex is cancer-free!! What a relief.

Thank you all for your prayers. I'll update more later, right now I have to go spread the good news!!

Please pray for Alex's friend Sara Mae. Sara Mae is having her spleen removed early Monday morning. This is a necessary but very risky surgery.

Monday, December 4, 2006 9:58 AM CST

Good Morning from snowy Cleveland. It is downright frigid here! I always say that Cleveland experiences winter from October until June!!

We had a nice weekend. Alex was in the mood to play board games, so the three of us played Candy Land and Thomas' Day Out AND Thomas' tic-tac-toe. Yesterday I did some grocery shopping and then we just hung out for the rest of the evening.

Alex is excited to see all of the Christmas lights outside. He told us we need to get "a lot a lot of colored lights for outside the house". We have a train that lights up on the front lawn, but he wants to decorate the trees.

When we started getting out the Christmas decorations a couple of weeks ago, Alex was helping me set up the Nativity. I was explaining to him what the Nativity means, the three wise men, etc. The next morning, he woke up and asked me if we could go downstairs and look at Baby Jesus and "God's Guys". We thought that was so funny. He also wanted to hang a stocking on the fireplace for "Shokie" his imaginary friend. (we did)

Craig and I are a little sober-minded right now. (not depressed, just sober) On Wednesday, it will be the two year mark of the worst day of our lives. On Friday, Alex has PeT/CT scans scheduled at 10 a.m. These scans will tell us if Alex is still cancer-free. I'm hoping we don't have to wait all weekend to find out the results. As soon as we know something, I'll let you know.

Please pray for Craig and I this week. We really try to keep our focus on the fact that Alex is with us and how much God has brought us through so far. Right now the temptation is to be afraid of the unknown and the possibility that we will get bad news -- again -- around the holidays. The old feelings sometimes come flooding back. We prayed together this morning. I know that will give us strength to endure.

I'll keep you posted.....

Monday, November 27, 2006 7:28 AM CST

Hi Everyone,

We hope that you all had a great Thanksgiving weekend. Ours was very mellow yellow. We were thankful to be together at home and not in the hospital. We have spent many a holiday over the past couple of years away from home. Being shut in can drive you bonkers sometimes, but we worked our way around it. It was so warm here on Saturday, that we went to Panera Bread for lunch and ate outside. It was a great compromise. Alex wasn't inside around all the germs, but we were able to get out of the house!!

Even though we didn't get to spend the weekend with our friends the Connors in Virginia, they included us in their Thanksgiving day. Peggy and I -- even though we couldn't cook together -- still made some of the same dishes. Peggy called us on Thanksgiving evening and we compared stories, then Mark emailed us pictures of their feast. There were pictures of Emma Claire toasting with sparkling cider, and Rosie the dog begging for food at the table. I wish I would have thought about taking pictures to send to them! Even though we were not together physically, we were together in spirit!!

Alex took a tumble again last night and had a huge hemotoma (sp?) on his chin. I iced him down, but that lump was being really stubborn!! I must admit that when he falls, because his platelets are dangerously low, the first thing I do is worry. This morning I read the verse that "nothing is impossible with God". That verse can be so convicting to me. I've said this many times since Alex got sick that I relate to the father who asked God to heal his son. The father told Jesus he did believe, but to help his unbelief. I know that God is powerful enough to heal Alex, but my faith waivers sometimes.

Sometimes I feel like Alex's low platelet count is another means of the testing of our faith. There is absolutely nothing we can do to make those platelets grow. It is in God's hands, period, end of story.

My sister sent me an article about God's timing the other day. The article went into great detail about how we live in a society that wants things now, now, now. It further explained that God has a greater purpose in waiting. In regard to Alex's platelets, I want them to return "now, now, now"!

Sorry if I have rambled on today, I think I was giving myself a little talking to! :)

Friday, November 24, 2006 8:13 AM CST

Good Morning

I hope everyone had a wonderful Thanksgiving. We made the most of the day. Even though we didn't go out-of-town, I cooked a turkey, etc., with recipes from Martha Stewart and Paula Deen. Everything was yummy. Alex was so excited to be eating in the dining room. He kept thanking me for allowing him to eat in the dining room! I learn so much from Alex. He is happy and content. He enjoys the siimple things -- like eating in the dining room!! I told him we can eat in the dining room anytime he wants to.

When we took Alex to clinic on Wednesday, we were startled to find out that he not only has a virus, but his ears were badly infected. So bad, that his ears had puss in them -- eeeeeewwwwwwww!!! He has such a high threshold for pain! I asked him Tuesday night if his ears were hurting and he said no. The doctor gave him a big dose of IV antibiotic, follwed up by nine days of antibiotic. Six extra pills a day!!

He also received a platelet transfusion. Hopefully that will make the bruises on his face go away. I've thought about putting the picture of him on the website, but I'm afraid we would be turned in for child abuse!! :) He looks like he's been in the boxing ring -- and lost!!

I hope you all have a wonderful weekend.

Wednesday, November 22, 2006 6:27 AM CST

I just have time for a quick update on things. We are not going out-of-town. We were praying that the Lord would make it abundantly clear as to whether or not we should go, and he did.

Alex had a low-grade fever all day yesterday. I was on the phone with the nurses/docs most of the afternoon, into evening. We were trying to keep from going to the ER to receive antibiotics. It is better to be treated at clinic because there are less germs to be exposed to. People in the ER have a miriade of things that we don't want Alex to contract. Alex started getting sick Sunday evening and he has progressively gotten worse. Even with cough medicine, he has coughed and been up most of the night for the past three nights. Needless to say, I will be drinking fully leaded coffee this morning!! :)

We are getting ready to leave for clinic. I have a feeling they are going to order a chest x-ray. His cough has gotten worse. Because his fever broke last night, that probably means his mediport isn't effected. However, Dr. Villella is ordering blood cultures and a dose of IV antibiotics.

Hopefully the platelets will clear up all the bruises on Alex's face. He really does look like he had a nasty match in the boxing ring!! I took a picture.

Well, I should go. We are off to clinic to get platelets and antibiotic. I am thanking the Lord that we are not sitting in the hospital. The three of us will celebrate Thanksgiving home together!

From the Hargenrader house to all of you, we hope you have a wonderful Thanksgiving!!

Monday, November 20, 2006 3:11 PM CST

We went to clinic today. Alex's platelets are two. That is not a typo, they are two. Alex is also sick AGAIN. We went on the Polar Express Friday night and Alex is now sick. He woke up at 1:30 a.m. and was "croupy", so I gave him his inhaler and some cough medicine. We still ended up sitting up for the rest of the night on the Lazy Boy.

Our plans for Thanksgiving are up in the air. We have to watch him for a fever. If Alex doesn't get a fever, we will go into clinic early Wednesday morning so that he can get a platelet transfusion before we travel.

Please pray that we have the wisdom to know what to do. Dr. Villella feels that we should go ahead with our plans to travel, as long as Alex is well. My concern is that he will get a fever. We will be near to Children's Hospital in Washington D.C., and they are very capable to treat Alex. I would just hate to have to subject him to a different set of doctors.

One day at a time.......

Thursday, November 16, 2006 7:59 AM CST

Hi All,

Please pray for our friends the Millers. Sara Mae is back in the hospital again. She has a lot of chronic problems because of her disease. Sara Mae was admintted to the hospital on Tuesday with the flu. As a result of the flu, her body created antibodies that are eating up her red cells. I must admit, that scares me because Alex's platelets are still too low for him to get the flu shot.

I have been working on a Bible study about the fruit of the Spirit. This week there has been emphasis on having faith in God for who he is, and not what he does. It is easy to focus on the things seen and not what is unseen.

Please pray that we will have wisdom as to how we need to handle cold and flu season.

As Thanksgiving approaches, we would like to tell everyone who reads our website and have so faithfully prayed for Alex how thankful we are for you. I've said it many many times, and I will continue to say that without the prayers of faithful people, we would not survive. God has sustained us many times because of your prayers.

Alex has a clinic appointment on Monday -- I'll let you know how it goes.

Monday, November 13, 2006 8:02 AM CST

Thank you for the prayers. Alex is still pretty congested, but the fever is gone and we did not have to go back to clinic on Friday.

As soon as the fever broke, he started getting some energy back. He also started eating again. Alex was well enough on Saturday that Craig and I followed through on our plans to go out. Alex stayed at home and played with Nina.

Craig and I got our flu shots on Friday. By Friday night, our arms were sore and we were a little achey. I said to Craig that everytime we get feel sick, it makes me think of all that Alex has been through. Alex was so sick that he was about to die. I don't know how he functioned, except to say that it was the grace of God. Thinking about that makes us so thankful for where he is right now. It's frustrating when he gets a virus, but a virus is not cancer. The big concern with a virus is the fever because of his central-line. The central-line is what makes a cold/virus/flu dangerous.

The I.V. antibiotic was effective almost immediately. I am also thankful that Alex didn't get c.diff from the antibiotic this time. Again, thank you for your prayers, they matter.

Alex has a clinic appointment next Monday to check his counts. In the meantime, we will just lay low.

Thursday, November 9, 2006 7:23 PM CST

Alex spiked a fever this morning, so the two of us spent most of the day at clinic.

The docs gave him IV antibiotics and sent him for a chest x-ray.

The x-ray came out showing wet, "gunky" lungs. I think "gunky" is a new medical term. There were no pockets of pneumonia.

I'm suppose to call clinic first thing tomorrow morning to give them a progress report. They will decide whether we stay home, or go back in for a check-up.

On the brighter side of things, Alex's platelets are up to 10 -- yippie!! His white count is up, which is an indication that his body is trying to fight off whatever virus he has. Maybe that immune system has a little life in it after all.

Well, I am exhausted. I'll keep you informed of any new developments.

Wednesday, November 8, 2006 9:10 AM CST

So far, so good, Alex does not have a fever. However, he slept sitting up in the recliner. He started "barking" in the middle of the night. I gave him his inhaler -- he fought me at first, but then he gave in and took it.
Needless to say, it was a rough night.

He is really stuffy and coughing up a storm. I'll probably call clinic today and let them know what is going on. I am praying that this cold does not settle in his ears. Also, because Alex's platelets are so low, he couldn't get a pneumonia shot along with a flu shot. We'll just have to be careful with him and not take him out at all this week.

Craig and I were talking this morning about the fact that this trial has really shown us that we are in control of nothing. We just have to completely surrender and trust God every day. Sometimes that is difficult, but when we do, there is freedom in that.

I think Alex and I are going to do "restful" things today. Maybe we'll color, or put a puzzle together.

Mitchel's mom, Mary, was reminding everyone who reads their website to pray for the families and children who are experiencing relapses, death and just the pressures of having this disease in their lives. She said that the Lord has been faithful to see them through the pressures. Pressures like medical bills, sometimes being separated from each other, the sorrow that this disease brings at times.

We can also be thankful for what God brings us through. I thank God for the friends he has given us in the midst of the pain. God is with us.

Well, Alex is coughing and he is looking for me......gotta go!

Tuesday, November 7, 2006 10:19 AM CST

Just a quick note. We have not fallen off the face of the earth.....I've been trying to really concentrate on behavioral stuff lately.

Alex is pretty bruised with LOTS of petechia -- not from behavioral issues, but from the low platelets.

I was up with him all night last night because he couldn't breathe. Some how he picked up yet another cold. So far he has no fever. I gave him Benadryl in the middle of the night and it did absolutely nothing for him -- it didn't even help him to sleep. This morning I gave him Sudafed and then I put him in the shower with one of those Sudafed shower tablets. They release menthol into the steam of the shower. It actually works really well.

My concern right now is ear infections. He is so stuffed up. Oh yes, and now that he has a cold and his body is fighting that off, his platelets will take yet another hit.

Please pray that Alex does not get a fever and that he doesn't have any active bleeding.

Monday, October 30, 2006 12:02 AM CST

Hi Everyone,

On a positive note, we made it a whole month between clinic visits. On the flip-side, we have to go back in two weeks. Alex's platelets have fallen more than half. His platelets were 14 on his last visit to clinic. Today his platelets are five. Because his platelets were so low, he wasn't even able to get a flu shot.

Alex dressed up in his Thomas the Tank Engine costume and handed out candy to all of the nurses and doctors. It was SO CUTE! All the nurses at ICC and Rainbow 2 were fussing over him. I'll post a picture of him in his costume. He looks so cute.

We are a little discouraged that his platelets have fallen so low. He even has petichia in his mouth! We are going to have to be very careful brushing his teeth, etc. The doctor also gave me the results from the blood work on Alex's immune system. Not great. Dr. Villella's exact words were that Alex's immune system is not "stellar" right now. We can take him in public, but we have to be cautious, especially because we are in cold and flu season.

I know I speak for Craig when I say that we would ask you to pray that Alex's platelets recover. It is so scary when his platelets are this low. The doctor prescribed a medicine for Alex that he wants us to have on "stand-by". It is a drug given to hemophiliacs to help blood to clot. We would only use the medication if he starts to bleed actively.

Alex is in God's hands, but we are reminded frequently just what we are up against.

Have a good day......I'm going to go play with Alex.....

Monday, October 16, 2006 7:28 AM CDT

Good Morning,

Sorry I haven't been updating as much as I use to. Things aren't as intense regarding Alex's physical treatment, however, the past few months have been challenging in a different kind of way. We are adjusting to Craig having a new job. He is still with National City, but he is going through the process of learning a new job.

As you know, we are facing some challenges with Alex's behavior and I am trying to work my way out of the hole of fear, depression and anxiety.

Something that has really struck me in the past 22 months is that there is no instruction book of how to get through cancer and all that it brings to your life. When Alex was first diagnosed, we were given a three-ring binder explaining treatment, etc. When Alex went through the bone marrow transplant we were given another three-ring binder to explain that process.

I wish the Lord would have sent us a three-ring binder. (ha ha) For those of you who really know me, you know that I say that with a sense of humor.

There have been so many times that people have looked at Alex and declared what a miracle he is, and trust me, he is. Sometimes Craig and I feel so bad that we aren't shouting from the roof tops because Alex is doing so well right now. I guess it is because we know we are still not out of the woods yet, and because we are still recovering emotionally from this whole ordeal.

We have more peace though. I think God just wants us to surrender ourselves in trust to him every day. We are so thankful for every day that we have with Alex. He is such a joy -- even when he is being a stinker!!

Craig and I have talked a lot lately about how thankful we are for the care that we as a family have received over the past 22 months. Alex has had the best nurses and doctors. The hospital and ICC staff seem to go out of their way to be kind and compassionate to us. Our friends from church were so supportive bringing us meals and cleaning the house. Our neighbors have truly defined loving your neighbor by bringing us meals, mowing the lawn, shoveling our walks, getting our mail, etc. Some of our family members have come out and helped in times of need. Friends from out-of-town have flown up here and helped us, or sent letters of encouragement. The notes on the website have been so touching and encouraging also.

God has used all of the above things to reveal to us that he is sustaining us every day.

There are still times that fear of Alex's disease and what the future may hold sneaks in, but I have to remember how far God has brought us thus far.

Sorry this is such a long entry. It was one year ago today that my friend Jaime called me to tell me that Cassie was about to die. Tomorrow it will be one year since her death. Sometimes it just makes you think.......

Thursday, October 12, 2006 8:21 AM CDT

Hi Everyone --

Things are good here. Each day is a gift and a joy with Alex.

We are still having some challenges with Alex's behavior at times, but we are praying for wisdom. Craig and I have another appointment with the behavioral psychologist today. The more we talk to this doctor, the more we are convinced that the Lord has led us to her. She reassures us that Alex does not have any kind of "disorder". We have to come up with "creative" ways to discipline Alex because of his low platelet levels. We are seriously afraid to even pick him up because he bruises so easily.

An example of that fear is something that happened on Saturday. We took Alex to a store with us and he got overwhelmed. He started to act out, and hit things, so Craig removed him from the store by picking him up. On the way out of the store, Alex was kicking and he ended up kicking the top of a park bench outside of the store. He had a whopping bruise. Also, where Craig had picked him up (under the arms, on the side....like you do most children) he had a bunch of petichia.

I think one of our biggest obstacles is what the doctor calls "mommy guilt". It's so hard to say no and stick with no when we remember how close to death Alex has been. I just need to remember that I should remember that part of Alex's life is behind us. We need to press forward and look forward to the future.

Well, Alex is up and would like some breakfast. I hope you all have a good day.

Tuesday, October 3, 2006 8:24 AM CDT

Alex is feeling much better! He still has a cough, but no fever and he is VERY energetic.

I took him to clinic yesterday and.......drum roll please.....his platelets were 14!!!! His white count was 6.8 and his red cells were up in the normal range again too!! Even with being sick, his counts went up. I truly count this as being a miracle. The fact that we did not end up in the hospital last week really is miraculous. His bruises are healing and he hardly has any petichia!

The past couple of months I have been discouraged at times because of hitting some bumps in the road. However, I have also been reading Psalm 27 as much as possible. Psalm 27:3 talks about "seeing the goodness of the Lord in the land of the living." The Lord has been very good to us in seeing us through the many difficulties over the past 22 months. The prayers of many faithful people have been so crucial in getting us through the rough spots. We still have our moments, but I am learning to cling to the hope that God gives us.

On Friday night, I flew to New York City to meet up with my friend Peggy Connor. Our husbands sent us off for what was my very first "girls weekend". We didn't go to New York without a purpose......we went to see Martha Stewart! Martha was doing a big show celebrating 15 years of her magazine. Peggy and I were one of the first people in line to get in to the event on Saturday morning. As we were going in the door, we were given a special pass to have our picture taken with Martha at the end of the day! We had so much fun! It was a little intimidating meeting Martha!

Peggy and I also went to a workshop where we learned how to set a beautiful table for holiday entertaining. All of this was right up our alley and we really enjoyed it.

On Sunday, we had brunch at Bobby Flay's Bar Americain. It was a culinary delight! We also went to Chelsea Market -- home of the Food Network.

The only part of New York that was scary for me was the taxi rides!! Those cab drivers are CRAZY!!! I use to take cabs in Washington D.C., and it was not nearly as coo coo!

Well, Alex is awake and asking for an orange, so I gotta go.

Thursday, September 28, 2006 12:27 AM CDT

Alex no longer has a fever! YEAH!! He is still coughing and his nose is stuffy. It looks like (for now) that this is just a cold. I've been giving him Sudafed, so he is a little wirey!

Thank you for your prayers.

Our trip to Strasburg, PA to ride on the train was so much fun! We picked up Craig's Aunt Mame and Uncle Rich on Sunday. We stayed at a Motel in Bird-in-Hand, PA that my friend Grace's family owns. It was so beautiful there. The country is SO peaceful. We had dinner with Grace's mom on Monday night and then we visited her for a while at her house.

Alex was in seventh-heaven on the train ride. We sat in the Parlor/first class car and we sipped on lemonade and ate pretzels while enjoying the scenery. Alex was so excited to see a real train "shunt" and "couple". He knows all the railroading terms! Best of all, he got to finally see Uncle Richie's trains. Craig's Uncle has made many videos of his trains set to music for Alex. Those videos have helped Alex through many tough days. Seeing those hundreds of model trains in person was a dream come true for him!

Here's a funny story about Alex. Last week Alex was playing with a doll that has a broviac. The hospital gives the children a doll and a doctors kit to help explain procedures. Alex was "flushing" his doll's broviac with an empty heprin seringe. I asked him if he was going to be a doctor when he grew up. He said "no, I'm going to be a Home Depot Teller Guy". I said what is a Home Depot teller guy? He said "You know, it is like a Target Teller Guy." He continued.....You walk up to me and say (with a lisp) "excuse me sir, where are the screws?"

Needless to say, Craig and I think he is hilarious!!!

The Lord has given us so much joy and laughter with Alex. We are truly thankful for him.

Thanks again for your prayers.

Wednesday, September 27, 2006 4:39 PM CDT

Hi Everyone,

We had a great time riding the trains this past weekend.
I'll have to go into more detail later.

Alex has had a low-grade fever today and I was in touch with clinic. He started having "cold symptoms" yesterday. I thought it was allergies because we were outside a lot. I was wrong. It is definately a cold.

Please pray for Alex, his body is just so worn down and he gets sick so easily. I am suppose to go out-of-town by myself for the first time since Alex was born. I need wisdom as to whether I should go or not.

It's discouraging that Alex is sick again! Unfortunately, this may be the way our cold and flu season will be this year.

Friday, September 22, 2006 9:17 AM CDT

Good Morning

This week has been busy, but better. Alex is a little bruised, but FULL of energy.

We are getting ready to go on a train trip this weekend. First we are picking up Uncle Rich and Aunt Mame, then it is off to ride a big steam locomotive on Monday. The ride is probably an hour long. Alex is SO excited! He is also going to get to go to a train museum. I don't know how we will contain him!!

Craig and I feel so much joy in our hearts watching Alex experience new and fun things. We are so thankful for every precious moment we spend with Alex.

Craig and I met with the behavioral therapist yesterday. Again, something to be thankful for. She assured us that Alex does not have any kind of disorder, he just needs time to adjust to normal life again. We have some disciplinary work to do -- but what parent doesn't?

We'll post some train pictures when we get back from our trip.

Saturday, September 16, 2006 9:44 AM CDT

I just pulled up Alex's web page and realized that for some reason, the last update I posted on Thursday with Alex's test results didn't come up on the web page.

ALEX IS CANCER FREE!! Dr. Villella called an hour after we got home on Thursday. We are so relieved and so is Dr. Villella. The spot in his lymphnodes was from the virus he had a few weeks ago.

Thank you so much for your prayers. This week was exhausting, but I really felt the Lord sustaining us. It was so nice having my father and my sister out here. Alex loved having them here too.

Sorry again for the delay in the web page. As soon as we found out the results, I pulled up the web page so we could share the good news.

Hopefully we will have a more mellow week this week.

Wednesday, September 13, 2006 4:36 PM CDT

Today was a trying day. When the docs started sedating Alex, he was rocking like he usually does and the needle in his mediport came out. So, he was only partially sedated and kind of convulsing. It took four of us (me two nurses and the doctor) to hold him down. He was yelling "mommy help" and his eyes were rolling to the back of his head. The numbing cream wore off, so he really started to cry when they tried to put the needle back in his mediport through the skin of his chest.

My father and sister had to leave the room. All involved were a little traumatized. Thank God Alex doesn't remember any of it.

The MiBG will be repeated tomorrow afternoon and then hopefully we will find out the results by Friday.

I'm exhausted. Talk to you soon.

Tuesday, September 12, 2006 6:16 PM CDT

We have had a crazy couple of days. On Sunday I woke up feeling pressure from my chest into my neck and jaw. Long story short, I ended up in the CCU overnight. Once they were able to rule out a heart attack and blood clot, they did an endoscopy and told me that my esophagus was spasming and that the lining of my espohagus and stomach are really inflamed. I have taken prevacid for three years. The docs asked if we were under any stress......Craig and I kind of chuckled. I must admit I am feeling pretty sick, but life keeps going.

My sister Sue and my father have come out to help us. We are very grateful for their help. They took us to clinic today. My friend Denise watched Alex for two days -- Thanks Denise.

Alex had bloody stools again last night, so we went into clinic early today. His platelets were five. Needless to say, Alex received a transfusion today. I'd be lying if I said we weren't a little discouraged.

Alex received his injection for the scans tomorrow and Thursday. He's such a trooper -- he's really having fun with my Dad. Right now the two of them are playing Hungry Hippos. They sound like they are having fun.

I hope to be sharing good news with you all on Friday. Thanks for your prayers.

Friday, September 8, 2006 8:08 AM CDT

Some of you may have already read that Alex is having the MiBG scan on September 19,20&21. Part of the reason for the delay of the scan is because Alex has to be sedated and we had to wait for a slot in the sedation unit to open up. We are thankful that the dye for the scan has be made available again.

The past couple of days around here have been a little quiet. Craig describes it as walking around in a fog.

Sometimes I beat myself up because of my lack of faith in the face of this trial and waiting. Obviously our biggest struggle is the fear of losing Alex.

Last week I read a quote that was encouraging to me. "Yet boldness in the face adversity does not always come immediately. Sometimes we have to wrestle it out at the foot of the cross." I am wrestling a little right now.

WOW! As I was typing this update, I received a call from the doctor saying that the scans have been moved up to next week! Anne said that it was unacceptable that we had to wait and that Dr. Villella wants us to find out what this is and then be able to move on. The Lord is so faithful and merciful to us. Now we only have to wait one week!

I'm going to go make a few calls to let people know the good news.

Talk to you soon.

Thursday, September 7, 2006 3:35 PM CDT

Hi Everyone --

I just received a call from ICC. Alex is going to be able to have the MiBG scan on the 20th and 21st of September. He will be injected with the dye on the 19th.

We have to wait, but we have dates on the calendar.

Talk to you soon.

Wednesday, September 6, 2006 6:30 PM CDT

We have the results of the tests.

The CT is unchanged. The MRI is unchanged.

The PET scan is abnormal. There are some small areas in the lymphnodes in Alex's chest and neck that are lighting up. This could mean a couple of things. This could be a relapse. The other possibility is that his body hasn't completely healed from the virus he had a couple of weeks ago. Dr. Villella told me that the virus was pretty severe. (I think those were his exact words)

The next step is to have an MiBG scan. However, nothing is ever simple. The makers of the scan have pulled the radioactive dye -- nationwide-- for quality control reasons. The doctor is going to call the company tomorrow to see if there is a chance of it being rereleased by next week so that Alex can have this scan done. MiBG is specific to neuroblastoma, so it is very important that he has this scan done. Please pray that Alex can have this scan done ASAP.

When he does have the scan done, it will be three days before we will have results. The first day is the injection of the dye, then 24 hours later we go back for a scan -- then the scan is repeated 48 hours later.

Needless to say, we will be waiting. We know that the Lord is our rock and our refuge and so we will wait in hope.

Wednesday, September 6, 2006 8:15 AM CDT

First, let me say thank you for your prayers yesterday. It is not easy going to the hospital for scans because we are always mindful of why we are there. Even after almost two years of going through this, we still say "How did we get here?" Is this really happening?

I was reading yesterday morning about the grace of God and how everything in our lives is filtered through his hands.

Alex is such a good example to Craig and I about simple trust and child-like faith. He has to go through things that no child should have to go through, but he takes it all in stride because he knows we are with him. When he gets the needle inserted in his chest to access the mediport, he is ok with it because he knows he can sit on my lap and I am going to hold him and love him through it. After the procedure is done, he gets up and starts to play again. Isn't that how I should be with God?

While we were waiting in the sedation unit, Craig stayed with Alex while I went down to Rainbow 2. Alex's friend Sara Mae is in the hospital because of an infection. It started out as a urinary tract infection, but because of the broviac, things got complicated and she ended up with a full-blown infection. Please pray for her. I know it is difficult for her mom to be seperated from her other two children while taking care of Sara Mae at the hospital.

I am so thankful that the Lord gave me the strength to go and visit for a few minutes. Usually, I am so anxious, I don't venture from where we are being treated.

While Alex was having one of his scans, Craig and I went to get a sandwich. We saw several hospital workers that we have come to know and love. (Hi Cindy!) After we saw her, we started talking about how much we have to be thankful for with the care that Alex has received. I cannot say enough about the RB2 nurses and the docs and nurses at ICC and the sedation unit. We thank God for them. They have been so good to Alex. They take the time to talk to Craig and I.

The doctor is suppose to call this evening with the results from Alex's scans. As usual, it is not easy waiting. There is always the possibility that we will not get good news. I just need to remember that in the mean time, I can allow God's presence to give me peace. Thank you for allowing me to give myself a pep talk. (tee hee!)

As soon as we find out the results from the scans, I'll update the site!

Sunday, September 3, 2006 8:43 PM CDT

We have a long weekend with Daddy this weekend -- YEAH!! Alex was so happy to hear that Craig does not have to go to work on Monday that he said we should bake chocolate chip cookies! So, yesterday, that is what we did. Alex has an apron with a teddy bear playing basketball on it. He looked so cute and he had a lot of fun adding ingredients to the mixer.

Please keep us in your prayers on Tuesday. Alex has his quarterly scans scheduled. Because he has had three clear bone marrow aspirates and three clear MiBG scans, he doesn't have to have those scans. Alex is not allowed to have any sugar tomorrow, and his scans aren't scheduled until 1:00 p.m. on Tuesday. Alex is such a trooper. He can eat until midnight Monday night, but then he won't be able to have anything to eat until around 4:00 p.m. on Tuesday. That is a long time for a little guy to go without eating, but he knows that on days that he gets "sleepy milk", he can't eat until after he wakes up from the "sleepy milk".

Alex is so funny! I take his favorite snacks with us to the hospital so that he can eat ASAP after his scans. We always ask him where he would like to go for dinner and he usually says "Sanera" Bread to get soup. For those of you who don't know what that means, the name of the restaurant is Panera Bread.

Craig and I were just discussing how we don't feel as worked up as we usually do about his scans. Could it be that we are learning to leave them in the Lord's hands? I hope so.

We will go to Clinic at 9:00 a.m. for blood work, etc., and then to the sedation unit at about noon. Alex will then have a PET, MRI and CT scan from 1 - 3 p.m. The docs will also have the urine test that shows whether the neuroblastoma marker is present. Craig is coming with us -- YEA!! We love our Daddy!

What a nice day we had today. We went to church, then we went shopping to buy us all some clothes for Fall. Alex has grown SO MUCH that none of his pants are long enough!! We then went out to dinner. It's a true joy to just be together. Last year at this time Alex couldn't even go into a store with us. This year I was able to hold up shirts and ask him which one he would like to buy. Of course one of the shirts has Thomas the Tank Engine on it!!

I will let you all know ASAP when we get the test results back. As always, we are thankful for your prayers.

Love,

Barb

Tuesday, August 29, 2006 11:55 AM CDT

Hi Everyone

Sorry I haven't updated the site in a while, but Alex and I are still fighting the flu. This illness is sort of a flu thing with a horrible cold. Alex has had a nasty cough for two weeks. So far I have had the cough for a week and I've been sleeping sitting up.

It's amazing how a somewhat simple virus can be such a set back for Alex. Because he has the mediport, the docs have to treat him with an antibiotic which gave him the c.diff. Yikes.

Last week was a bit of a discouragement to us. Craig started a new position within National City, so he had to go to work leaving Alex and I at the hospital and at home sick. I'm telling you, this virus hit us hard. We survived, but we are still recooperating. I think the biggest disappointment was that we were feeling like we were making progress and getting out some then Alex got sick. Cold and flu season hasn't even hit and Alex has a gotten a virus.

Being at the hospital was interesting. We weren't allowed out of the room because of the fever and diarrhea. However, I think we ended up visiting with every nurse on the floor. Everytime one of the nurses found out that we were in the hospital, they would come in and chat. They were all amazed at how big Alex is getting. Even being ill, Alex was entertaining the troops. We love all the nurses on Rainbow 2 -- they have become family to us.

I realized something when we were admitted to the hospital. We were released on August 23 -- exactly one year to the day that we left the hospital after Alex's bone marrow transplant, and exactly one year after Jordyn's death. What a difference a year makes. It's bitter sweet.

Sometimes in this situation you can't see the forest for the trees, but a couple of nurses and even a cleaning lady told me that I seem so different. I wasn't sure what they meant until they explained that I looked more peaceful. The last time Alex was in the hospital the Art Therapist told me the same thing. They actually used the word peaceful. That shocks me especially because it is still very difficult to be at the hospital and clinic. I shake and sometimes I even feel sick to my stomach and dizzy. But then I realized, it has to be the Lord holding me up. A wonderful older woman at church has reminded me so many times that even if I can't feel it, God's everlasting arms are holding me up. I think the Lord gave me proof of that through the encouragement of people at the hospital.

Thursday, August 24, 2006 7:18 AM CDT

Hi Everyone --

We got home yesterday afternoon. Alex is feeling better. He was officially diagnosed yesterday with para-influenza -- which is the flu virus plus croupe and a double ear infection. He also ended up getting c.diff which comes from the strong dose of antibiotic he got on Friday. The antibiotic kills the good and bad bacteria in your body. C.diff gives you terrible diarrhea. Alex was confined to his hospital room for three days so that he would not infect the other children. Everyone that came in the room hade to "gown-up" and where gloves. Alex really needed the IV fluids because he was dehydrated as a result of the c.diff.

We are glad to be home. I have come down with the same thing Alex has, minus the c.diff so I am going to sign-off for now.

Tuesday, August 22, 2006 6:30 PM CDT

Hello Everyone, (Lisa here)

Barb asked me to post a follow up note to let you all know Alex did have to be admitted to the hospital. They ended up treating him with IV antibiotics after seeing blood in his stool. And she said they gave him some platelets as well. He is feeling much better today and I could hear him playing and talking in the background. He was saying "I feel much better".

Barb thinks she may be coming down with the same "bug" Alex has had. She sounded stuffed up and said she wasn't feeling to great. They are due to come home tomorrow afternoon.

Friday, August 18, 2006 3:11 PM CDT

Hi Everyone --

Well, we spent all day at clinic today. Alex is sick with what we think is a virus. He's been running a low-grade temperature since yesterday. Last night his fever spiked at 101.6 so I gave him some Tylenol. This morning he was no better and I had to give him a dose of his inhaler again.

I called one of Alex's nurses just to see if I should give him some benedryl and another nurse returned my call and said Dr. Villella wanted Alex to come in to get IV antibiotics. They wanted to make sure he doesn't have an infection in his mediport line. The doctor ordered a blood culture. We were told if he comes back positive tomorrow, they will call us and Alex will be admitted to the hospital. Also, if he wakes up with a temp of 100 degrees we will have to go back to the hospital for more antibiotics.

One of the docs told me that when I saw that Alex's temp was in the three digit (100 or above) I should have called into clinic last night. I thought he was far enough out from his illness that I could treat him at home.

I need to go, Alex needs me to hold him. We'll keep you posted.

Thursday, August 17, 2006 7:40 AM CDT

Good Morning Everyone,

Alex is doing well. He is a little bruised, but over all, he looks good. Alex has such a zest for life. He's been busy playing with his cars from the "Cars" movie and, of course, trains!

Speaking of trains, we are going to be taking a trip at the end of September with Alex's Great Uncle Rich and Aunt Mame to Strasburg, PA to ride a steam locomotive. Rich and Alex are two peas in a pod when it comes to their love of trains. We will be staying at a Motel that my friend Grace's family owns and operates.

When Alex was in the midst of the worst of his treatments, the only thing that would comfort him was watching videos of Uncle Richie's trains. Rich had made Alex several dvds of his model trains that are set to music. Those videos were the only thing that truly comforted Alex when he was really sick because of the chemo.

The Lord has been so faithful to us. I really feel like He is lifting us out of the pit. Psalm 40 says "I waited patiently for the Lord; he turned to me and heard my cry. He Lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand." I must admit, I have to daily surrender my fears and doubts to God. We are so mindful of the fact that neuroblastoma is a wicked, sneaky disease and it could return. Alex still has low platelets and scans, etc. We still have a lot of waiting and trusting to do. However, Alex is disease-free right now so we must trust and thank God for that.

We make the most of everyday together. We appreciate every moment we have together. Even something as simple as getting haircuts together is fun for us. Alex was bald and had no eyebrows or eyelashes last year. This year, he has had several haircuts. Alex was sitting in the chair watching Crystal cut his hair on Tuesday night and he said "so this is how you cut hair." He said it so matter-of-factly that we all started to laugh.

I feel hopeful for the first time in a long time. Thank you for your prayers.

Thursday, August 10, 2006 7:34 AM CDT

Good Morning Everyone,

It is official, Alex's PNP called on Tuesday and said that they have decided that our visits to clinic have been scheduled for only once a month. Again, I say WOW! Our next appointment is September 5th. Alex will also have a CT, PET, and MRI done on that day. What is shocking to us is that there is not a need for him to have an MiBG (the test that specifically targets neuroblastoma) or a bone marrow aspirate. The protocol is such that if there are three consecutive clear MiBG's and BMA's, there is not a need to repeat them for either six months or a year. (I can't remember which)

We are so very thankful to the Lord for Alex's progress. God has heard and answered so many prayers on Alex's behalf. While we are so very grateful for Alex's energy and life, etc., it is hard for Craig and I to understand why other children haven't done as well. Little Mitchel continues to fight and fight and fight neuroblastoma in New York. His family is away from home so much. We don't understand why other children with different diseases have died.

Do you know that it has been a year since Alex went to the PICU? That was one of the scariest times for us. It will be a year ago on August 23rd that Jordyn went to be with the Lord. We pray for her parents all of the time. They have needed distance and to put RBC Hospital behind them, so we haven't contacted them. I don't think a day goes by that I don't think of them and pray for them.

The word struggle does not adequately describe what the parents of deathly ill children go through.

God has shown me over the past few days that though my faith has waivered, he has never left us through this whole ordeal.

We took Alex to the Behavioral Therapist yesterday. She has survived a brain tumor as a child. She has also taken care of her mother and grandmother when they suffered with brain tumors. We feel like she understands both sides of the difficulties that we have faced, and how to fix some of the problems that are the result of the illness.

Craig and I came out of that appointment with a great sense of relief. I actually felt joy for the first time in a long time yesterday.

Please never underestimate what your prayers can do. I know I have underestimated my own prayers because at times it has felt like they were just bouncing off the ceiling. Waiting is difficult and sometimes painful, but it is for a purpose.

Well my little guy is awake, so I must go. Please keep Mitchel in your prayers, he and his family have been through so much......

Monday, August 7, 2006 6:17 PM CDT

Hi Everyone,

Sorry it has been so long since an update.

Alex's appointment went well today. His platelets were up from 10 to 12. We were surprised given the amount of bruising he has. His red cells are good too -- 11.1 -- normal is 11.4 - 16. The white cells are slightly below normal, but nothing to be too concerned about. If it was cold and flu season, there may be more reason for concern.

Dr. Villella examined Alex and said that he wants to see him in two weeks, and then we are going to talk about spreading our visits to once a month. WOW! Once a month. I'm thankful that the doctors think that he is doing well enough for him to only be seen once a month. Alex is due for scans in September.

Daily trusting God is so challenging sometimes. It's easy to focus on the nature of Alex's disease rather than the fact that he is in remission right now. It's easy to be afraid of being caught off-guard by the disease returning.

Well, I need to go make my family dinner. There is more to share, but not enough time to share it today.

Thanks for the prayers

Tuesday, July 25, 2006 9:33 PM CDT

We have had some good news today. Dr. Villella called us on the way to Niagara Falls to let us know that Alex's MRI is clear!! That means that Alex's problems are not medical. What a relief!

Even though we thought that the scan we would be normal, we are mindful of the damage that chemo/radiation/disease could have done to all of Alex's organs.

About a half hour after we arrived,Alex was helping Craig to unload the luggage from the car. During that process, he pulled his backpack out of the car and managed to slice open the front of his leg with the wheel of the backpack. Blood and petichia now cover the front of his shin. Never a dull moment.

My faith has waivered so many times during this process, but I am thankful that God has heard our prayers and continues to be faithful to us.

Talk to you soon......

Tuesday, July 25, 2006 9:31 AM CDT

Hi Everyone,

We will probably find out the results of the MRI later today. The doctor said if we don't hear from him by 4:00 p.m. to call him. He told me another thing they are looking for on the MRI is a slow bleed in Alex's head. We really don't think this is the case, but it is scary to think that it could be. I'm glad the doctors are on top of this.

Thank you for your prayers. Yesterday went well. God kept putting people in my path yesterday to take my mind off of the scary stuff. I shake inside everytime we go to clinic and I hate having to walk through the hospital.

Alex was SO cooperative at clinic. We then started to walk through the hospital. We have to walk through the Atrium to get to the rainbow tower where the sedation unit is. The Atrium is where the cafeteria is. Alex was not able to eat anything until around three o'clock yesterday. As we were walking through the cafeteria, he said "oh look, everyone is eating....I can't eat yet." I just felt like God gave him such a measure of grace. We were talking about an attraction at the hospital where there are balls that go through various tunnels and up and down little elevators and it makes all kinds of neat noises. Alex stopped to look at it and I was feeling really unsteady. Just then, one of the nurses from clinic said hello to me and we started talking and I immediately felt better.

We then went up to the third floor and one of my favorite nurses was Alex's nurse and Dr. Hadad (the E.R. doctor that saw us the first night Alex was diagnosed with a tumor) was his sedation doctor. Dr. Hadad was so happy to see Alex and Maureen hugged me. We all joked around and it was like we were family. I realized at that moment how the Lord was just surrounding me with comfort through those people that know and love us so much.

As Alex was waking up from sedation he was quoting the Disney Cars movie!! He was saying "speed, I am speed, I am Lightening McQueen!" It was hilarous!!

We got home around 5:30 p.m. Alex immediately started playing and I sat and took a deep breath!!! A day like yesterday is exhausting, but the Lord really got me through it.

Thank you again for holding us up in your prayers.

I'll update the website as soon as we hear anything.

Thursday, July 20, 2006 8:03 PM CDT

Hello Everyone

I spent a good portion of today on the phone. Everytime I would hang up from one call, another one would come through. I must admit, I was very discouraged at the beginning of the week. However, the series of events that have taken place over the past couple of days has encouraged me.

Ever since my friend Peggy visited, Craig and I feel like the Lord has been putting some things into place for us. Peggy recommended that on Monday we call clinic and tell them how Alex was starting to harm himself. Clinic contacted a behavioral therapist. This doctor didn't have an opening until September, but due to the urgency of the situation, she is able to see us in early August. This doctor will work with Craig and I more than she will Alex. She'll teach us how to help him cope with new situations and how to discipline him when he acts out. I feel good about going to this doctor because she shared with me that she was a pediactric cancer patient herself and that is why she chose to become a doctor. She wants to help kids like herself. She understands how the whole family struggles with this disease and treatment.

Dr. Villella and Anne were able to set up an MRI on Monday afternoon. Please pray for Alex, he won't be able to eat all day. The MRI is scheduled for 2:00 p.m. As I said before, the MRI is to rule out any possible damage that could have been done to Alex's brain during his treatment. Both of Alex's nurses and Dr. Villella said that sometimes there is no way of telling what the long-term effects of the chemo/radiation/surgery have done to Alex. Craig says we don't know what it has done to him body/mind/spirit.

Sometimes I wonder about the effects of not only the chemo and medication that he has been on, but also the fact that Alex has been sedated well over 45 times.

We are going to go to Niagara Falls for a couple of days next week -- we are leaving on Tuesday. The three of us are looking forward to just relaxing and being with each other. I'll probably call clinic to find out what the results of the MRI are. We'll take our laptop with us so that we can keep everyone informed.

Thank you for your prayers. I hope everyone has a good weekend.

Wednesday, July 19, 2006 8:11 AM CDT

Good Morning Everyone,

I called clinic on Monday morning and we have been referred to another doctor to give us some guidance on how to handle some of Alex's situations.

The Lord is working this situation out because between having Peggy here and helping us over the weekend and the phone call I made on Monday, we are getting somewhere.

Dr. Villella called last night and said that he had been filled in on what has been going on. Just to be sure that nothing else is going on, Dr. Villella has scheduled an MRI-- probably this Monday. The doctor explained to Craig and I that there could be side effects from Alex's treatment that may have effected his brain. The doctor said that he would probably have a neurologist look at the MRI and possibly have the neurologist examine Alex. Apparently, there are medical problems that can look like behavioral problems. I hope that makes sense. I'm still trying to process all of this.

Another thing that Dr. Villella said was that he has seen neuroblastoma do some tricky things. Although he does not think that the disease has returned, he wants to make sure it has done no damage.

The behavior that Alex is exibiting could be social anxiety and as we get him back into a normal schedule, it may work itself out. For example, Alex has a little bit of a "tick" when we are out, or something is new to him. He will also get very overwhelmed and start throwing himself around.

I'm so glad that Peggy was here last week because she could tell us that this was not normal.

Thank you for your prayers, I'll keep you updated.

Sunday, July 16, 2006 9:09 PM CDT

Hi Everyone,

I want to give you an update on Mitchel, but I really thing you all ought to read his website to get the full story and the series of events. It is truly a miracle what has happened to them over the past few weeks. His website is www.caringbridge.org/ok/mitchel. The neuroblastoma tumor started to die off on its own. The antibodies must have done their job. You really need to read the story for yourself. Long story short, he won't need chemo, only a little radiation and then back on the antibodies. We are so happy for Mitchel and this family.

The website hasn't been updated a whole lot lately partly because we have been a little busy over the past couple of weeks and partly because I haven't felt like going into details about our situation lately.

My friend Peggy Connor (the one we met up with in Disney) and her daughter Emma have been here since Thursday. They are leaving tomorrow morning to go back to Virginia. It's been wonderful having them here. We went to see the tall ships that were docked on Lake Erie this weekend. Peggy has been making us some yummy treats in the morning for breakfast -- some very healthy, others not so healthy, but very tasty.

Alex has had a really rough weekend. Peggy has been a tremendous help to us in some very tough moments. It's such a God-send to have someone who understands and empathizes with our situation. She has helped restrain Alex at times and has also loved him a lot. Peggy use to be a nurse who dealt with cancer patients of all ages. She truly understands what we are up against and that there are no easy answers.

Some days it feels like we are drowning. Alex is so bruised right now. I'm going to have to call into clinic in the morning because he looks terrible. He has a huge hematoma on his hip that is about two inches in diameter. He has been pretty miserable today. Peggy can assess the situation and give us wisdom and guidance in how to handle Alex.

We are still struggling to find what our "new normal" is. After praying for answers, I think God has shown me I really have to let go of what use to be. I mourn the loss of our life before cancer. Mondays use to be the day we went to Kindermusik, Target and the grocery store. Now, we go to clinic every other Monday. I'm thankful that we aren't going to clinic three times a week like we use to. Driving is still an issue for me. Being out in public can be an issue for me. All in all, I guess you could say that Alex and I are a mess.......poor Craig.....he has to live with us.

Monday, July 10, 2006 12:04 AM CDT

Hi Everyone,

Sorry about such a lengthy time between updates. Craig's parents brothers, sister and all of the grandsons came and visited us over the 4th of July. They came last Saturday and left on Tuesday the fourth. Alex had so much fun with all of his cousins. It was fun to have all seven boys in one place. Our house saw a lot of activity last weekend. Alex kept telling his counsins how much he loved them -- it was very sweet.

We went to Clinic today. Alex's platelets were 16 today! Up from nine. His white count was up from 5 to 6.2 and his red cells went from 11.5 to 11.2. Alex has lots of bruises, but the fact that his platelets are up is a good sign that he is healing and still making a few platelets on the side.

Please pray for our little friend Mitchel. He is going into surgery at 2:45 p.m today to remove the new tumor that has appeared. He was in remission from neuroblastoma and is being treated in NY at Sloan Kettering.

We are still experiencing a lot of emotional ups and downs. Alex seems happy though -- we are still dealing with behavioral things, but not as bad, and few and far between.

Please keep praying -- we need it.

Monday, June 26, 2006 5:01 PM CDT

Nine.......that's right, I said nine. Alex's platelets were nine. Did everybody get that??? YIKES!! The doctor did not feel it necessary to give Alex a transfusion. We are going to have to really monitor his activity.

On Friday Alex got angry because Craig made him come in the house because he wasn't sharing his pedal car with one of the little boys in our neighborhood. In his fit of anger, he banged his forehead (on purpose) into the dining room window. I think that concerned everyone at clinic. They aren't too fond of low platelets and the possiblity of internal injuries/bleeding.

As we were leaving clinic today we saw Alex transplant doctor. I mentioned Alex's platelet level to her and she said she has another neuroblastoma patient that has pokey platelets too.

Alex is bruised, but not too badly. It is such a temptation to worry about Alex's platelet levels right now. It is no joke to say that they are dangerously low. I can't help but think that God is protecting Alex because he has had no active bleeding. i.e. nosebleeds, gum bleeding, etc.

On Thursday it will be Alex's one year anniversary. (and our 10th) I can't believe it has been one year since his bone marrow transplant. What a day that was. Alex was so sick. Alex was so bald. Alex was so skinny.

What a difference a year makes. Alex has a full head of hair, he's gained several pounds and he has a lot of energy!! The Lord has been gracious to us.

I wonder sometimes if God isn't trying to stretch our faith and just trust him completely -- that means with platelet levels too. I am working on it. I was reading in Streams in the Desert this morning that we should dare to ask and trust God for things. Then, on the way to clinic I was reading my Bible and I came across the verse in Matthew about not worrying about tomorrow because tomorrow has enough worries of its own.

I truly feel like my heart is physically being stretched sometimes. The past 18 months have been a roller coaster ride at times. We are learning so much about making the most of every day that God gives us -- even the hard ones.

Thank you for your prayers. We still need them -- especially for the platelets. Please also pray that Craig and I will have peace and wisdom regarding Alex's activity level. I want him to have fun and be a boy, but his platelet levels are scaring me right now.

Friday, June 23, 2006 7:24 AM CDT

Good Morning Everyone,

First, Mitchel's parents received word on Wednesday that his bone marrow is clear. That is such an answer to prayer. Please keep praying that he doesn't get the chicken pox. His surgery is scheduled for July 10 in New York. Mitchel and his family have been through so much.

Alex has had a pretty good week -- a few shut-ups here and there -- but much better. This story is kind of funny.....Alex said shut-up to me this week and I told him he should take it back and he said that he couldn't because it was too far out of his mouth to reach. He then said, very matter-of-factly, that he thought he still had a lot of shut-ups left in his mouth. Sometimes it is so hard not to laugh. He is so smart, but what a stinker.

We have a clinic appointment on Monday. I'm not expecting great results with the platelet level now that we know it is going to take a lot of time for them to recover. Alex has a little bit of petichia and small bruises here and there, but nothing like a couple of weeks ago. He really did need the transfusion.

There have been major storms and heavy rain the last few days here in Ohio. Yesterday something happened with the circut that our sump-pump is on and, long story short, our basement ended up flooding. Thank God we don't have the carpeting down yet, but it still made a mess. We have quite a few things in the basement. Craig was up until about 2:30 a.m. and still didn't finish moving everything. Everytime I tried to help, Alex would come downstairs, so I ended up staying upstairs with him. We have to be careful with Alex's toys that were downstairs. I'll have to clean them well because any mold or mildew exposure is dangerous for him.

Our neighbor brought over a pump and dehumidifier. He asked me if I was having a bad day. I told him we've had disease, now flooding......I'm just waiting for the locusts! (ha ha)

Monday, June 19, 2006 7:59 AM CDT

Good Morning Everyone,

I just thought I would take some time to update you on a couple of things. Last week was a very emotional week. Alex held up well considering all that we put him through.

In the beginning of the week, before Alex's scans, we were so afraid because we had just learned that Mitchel has relapsed. Please pray for strength for his family. As I said last week, they have to wait until July 10 to do any surgery due to Mitchel being exposed to chickenpox. Simple childhood ills are not simple to our little guys.

We were told on Wednesday that the doctor should have all the test results within 24 hours. Alex's PNP called on Thursday at 3:15 p.m. and told me that Dr. Villella would be calling Craig and I at 5:30 p.m. with the results. I called Craig at work and he came home and we waited for the call. We waited and waited and waited. We figured by about 10 p.m. that night that we were not going to get a call. Of course, our families were calling and everyone's thoughts were getting the best of them.

I know what you are thinking......why didn't you call the hospital? Craig and I know the drill. We knew that if it was a medical emergency that the doctor would have called. We also knew that there were a record amount of children that had to be seen at clinic on Thursday. Forty-four to be exact. ICC staff works so hard.

Craig called Alex's PNP on Friday morning and she was surprised we didn't get a call and she asked why we didn't call the hospital and have the doctor paged. Craig told her we know the drill. Anne then told Craig the doctor would call us in a half hour and four and a half hours later he called. It was still so difficult to wait. When we are waiting for test results, it feels like our lives come to a screeching halt. Some people busy themselves, I tend to become paralyzed. Craig and I sat and prayed a lot during those couple of days.

To make matters worse, Alex had a low-grade temperature on Thursday and he wasn't interested in eating or playing. All he wanted to do is sit on my lap and be rocked.

There are several verses in the Bible that talk about hiding under the shadow of God's wings. I felt like I was cowering under the shadow of his wings. God was merciful in that even though we heard nothing on Thursday night, all three of us slept all night. That is very unusual for me.

When Dr. Villella finally did call he said he was extremely happy. There is no evidence of disease. He said he wasn't going to lie to us that there was some uptake of constrast on the PET scan. However, the uptake was around Alex's mediport and the tumor bed. Those are areas that Craig and I call Alex's "battle wounds". He has a lot of scar tissue in those areas and that is what was lighting up on the scan.

As for the platelet issue -- Dr. Villella talked to the transplant doctor and she said she does not want to give Alex a "boost" of his stem cells in order to bring his platelets up. She said Alex doesn't have a lot of cells in reserve and they may have to be used at a later time. The doctors think Alex's platelets have dropped so much because he is using all of his platelets due to increased activity. The transplant doctor also said that she has had patients in similiar circumstances and that it can take 2 to 3 years for platelets to return to normal.

I should go, but before I do, I thought I would share with you one more thing about last week.

Alex has a cd with scripture memory verses set to music. They are the sweetest songs. There is a song on the cd that talks about a little boy who is "dangerously ill". His mother walks in to his room and he is lying with his hands open. She asks him why. He tells her because when he doesn't know what to pray, or doesn't have the strength he just opens his hands to God. The words of the song are from Jeremiah. A little child then starts to sing "heal me, Oh Lord, and I shall be healed, save me, Oh Lord, and I shall be saved.....for you are my praise, for you are my praise.....heal me, Oh Lord, for you are my praise."

Alex sings that song so sweetly that it makes me cry just to think about it. My prayer is that God hears his sweet little heart and heals him completely. I pray that for Mitchel too.

Friday, June 16, 2006 2:42 PM CDT

Hi Everyone,

We finally have some test results!! We were suppose to hear yesterday evening, but the doctor was delayed with other issues.

We are thankful to say that Alex's scans are clear. The Lord has been so merciful to us.

Thank you so much for your prayers.

I plan to elaborate more later, but I have several phone calls to make.

Wednesday, June 14, 2006 7:06 PM CDT

Hi Everyone --

We have had a VERY long day today. We arrived at the hospital around 6:40 a.m. this morning and we left at 5:30 p.m. Alex had all of his scans and then we went to Clinic. We ended up being at Clinic for 5 hours. Alex's platelets have taken a big dive to 8,000. The nurses paged Dr. Villella and it was decided that Alex needed a transfusion of platelets. He gets two adult units, washed, etc. It usually takes about 2 hours for them to be prepared. First, there was a mix-up at the blood bank with his orders ,and then there were a couple of emergencies in the hospital that required the immediate attention of the blood bank staff.

Needless to say, we are exhausted and we are afraid.

I checked our friend Mitchel's website and the neuroblastoma has returned. The doctors think it is only in his one lymphnode, but they won't know for sure until Monday. To make matters more serious, as I said before, he was exposed to chicken pox. Therefore, the doctors won't be able to operate on him until after he spends time in isolation to make sure he isn't going to break-out. Please pray for Mitchel and his family. A relapse is our biggest fear and it has happened to Mitchel.

We should be receiving the results of Alex's scans sometime tomorrow evening. We are trying to set up a time when Craig will be home so that I won't be alone when the doctor calls.

Saturday, June 10, 2006 7:58 PM CDT

Hi Everyone --

This will be a very short update.

We've been experiencing lots of ups and downs this week with Alex's behavior. This always concerns me because sometimes it is difficult to tell what is his age and the fact that he is strong willed, and what could be illness.

He has said to me a couple of times today that he doesn't feel well and he has had several outbursts. The closer we get to have scans, the more scared I become, especially if he says he doesn't feel well.

I then checked our little friend Mitchel's website. Mitchel has neuroblastoma and he was being treated at St. Jude, however the disease was not going away so they sent him to Sloan Kettering in NY. Mitchel has been receiving F-8 antibodies for treatment. Mitchel and his Mom, Mary, fly back and forth from Oklahoma to NY every so many weeks for his treatments.

According to the website, Mitchel had a spot show up on the MIBG scan on Friday. The MIBG is used specifically for dectecting neuroblastoma.

Please pray for Mitchel and his family and the decisions they may have to make.

Wednesday, June 7, 2006 8:26 AM CDT

Good Morning,

Clinic was a little crazy on Monday. Not only were they very busy, but the machine that analyzes the blood was down. It took a couple of hours vs. a couple of minutes to receive Alex's blood counts. His platelets were down from 34 to 17. It's not surprising to us considering he tipped his pedal car over on Sunday and head-butted the concrete. He has a nice bruise on the side of his head. I know many of you out there are saying should he have been wearing a helmet?........that's what I said.......

Alex is pretty bruised and full of petichia. What can I say? He is a VERY active four year old. Yesterday he slipped on the kitchen floor and ended up with a fat-lip and a red bruise on the end of his nose. It looks like he has a sun burn on his nose.

On Sunday afternoon, several little girls from our neighborhood came over and played with Alex in his play area. I think there ended up being six girls all together! There are not very many boys Alex's age in our neighborhood.

I am already dreading the scans next week. Most parents do. It's fear of the unknown. It's fear of relapse. It's also a matter of trusting God. I have to keep applying what I am learning in scripture.....trust in the Lord with all your heart.....

On a positive note.....The Make-a-Wish fundraiser was nice. We visited for about an hour and a half. Sylvania gave Alex a go-cart trophy with his name on it. They also gave him a t-shirt with a go-cart and the details of the event on it. It was really nice.

I should go. I hear the laundry calling my name!! Thanks for checking in on us.

Friday, June 2, 2006 7:48 AM CDT

Good Morning Everyone,

Sorry the updates have been few and far between lately.

Last weekend, we took a HUGE step of faith and traveled four hours by car to visit my sister and her family. Dr. Villella gave us permission to go. We had to take preventative steps like scoping out the nearest local and big city hospitals -- just in case Alex needed immediate medical attention.

I know that we need to start living a somewhat normal life again, but it feels strange. Alex is definately ready to be out and about. It is a constant matter of surrendering the situations over to God. Certainly we have to be wise, and there are still limitations as to what we can do because Alex's platelets are still so low. To have fun again and to see the smile on Alex's face when he is doing something fun does our hearts good.

Last weekend we took Alex to a small amusement park that my family use to go to when I was a child. Of course Alex found a train to ride on!! We also took Alex to a train museum. We didn't have time to go into the museum, but we walked around the outside yard and looked at old trains. Alex was just as excited seeing the old trains as he was being at Disney World! He was walking around and pointing out all of the trains to Aunt Sue and Uncle Mike. It really was funny -- they would ask him what kind of train we were looking at and he would tell them. For example, the Pennsylvania GG-1, a steam locomotive vs. a diesel. He knows the technical names of the different parts of the trains too.

It was such a joy to see him so very happy. God has brought him so far in a year. Last year, on this very day, we were in the hospital preparing Alex for 7 1/2 hours of surgery. This year he is running around and exclaiming that he has a lot of energy. The verse that keeps coming to mind is "Surely I will see the goodness of the Lord in the land of the living."

Alex has a clinic appointment and a radiation follow-up appointment on Monday. On June 14 Alex will have a CT, PET and MRI scans. Please pray that all of these tests come back clear.

Tomorrow morning we are attending a fundraiser for the Make-a-Wish Foundation in honor of Alex and our trip to Disney. Sylvania Corporation sponsored our trip. The employees of Sylvania organized a go-cart race to raise money for Make-a-Wish and they asked if Alex could attend. We are more than happy to participate! Over 84 cents of every dollar raised for Make-a-wish goes to the families. The biggest expense to grant a wish is the airfare. Make-a-Wish is a wonderful organization. They bring a lot of happiness to children with life-threatening illnesses and their families.

I hope everyone has a good weekend. I'll update you on Alex's progress sometime on Monday.

Friday, May 26, 2006 8:46 AM CDT

Happy Friday Everyone --

Well, I said that I was going to tell you more about our Disney trip, so here goes........

A few months before our trip to Disney, I called our friends the Connors -- Mark, Peggy and Emma Claire. Mark immediately asked if we would mind if they planned a trip to Disney the same week so that he could meet Alex. We were thrilled for the opportunity to spend some time with them. Mark and Peggy keep telling everyone that they invited themselves on our trip, but that is not true!!! We have been talking for years about taking a trip with them and have never followed through.

We have known the Connors for 15 years. They have been through many ups and downs with us. Peggy even came and stayed with me for several days while Alex was hospitalized during his bone marrow transplant.

The Connors stayed on Disney property. We made plans to meet up with them several times and they were a God-send. Alex has fond memories of Miss Peggy playing with him over transplant. Craig had never met Emma Claire, and Mark had never met Alex. It was such a happy reunion!!

There were several times when Alex felt sick, or I was worn out from the heat and activity. Mark and Peggy were so gracious to take us back to their hotel where we would rest, have a snack, and then go back out for more fun. Emma Claire.........what a girl!!! She was like a big sister to Alex. She would take him by the hand and escort him on to rides, or she would sit with him in a stroller and talk with him. Emmma is 8, Alex is 4. Emma was so patient and kind with Alex. Alex had so much fun having another child around that on the days we didn't meet up with them, he would cry and say "I want to go be with Emma Cwair". (he doesn't always pronounce his "L's" correctly)

Alex LOVED the Dumbo ride, Peter Pan ride, the Pooh honey pots, and the Buzz Lightyear Adventrue. He was restricted as to what he could ride, but there was still plenty to do. Of course he LOVED the monorail and the old-time steam locomotive!

We ended the week by joining the Connors for dinner at Cinderella's Castle on Craig's birthday. It was wonderful. We relaxed, we had fun and we laughed. I want to cry just saying that.

Craig and I have said many times that if the Connors hadn't come, it wouldn't have been as fun. Peggy is a pediatric nurse, so we felt safe having her there. Most of all, God really blessed us with wonderful friends. The Connors are wonderful Christ-like people in our lives. They are friends that we laugh and cry with. They gave us a sense of normalcy. They are also CRAZY!!!

Many times while were were with them we laughed until we cried!! Mark knows exactly what I am talking about!! Anyone that knows Mark should ask him about what Craig likes to call the "Purell incident".

As you can see, God truly blessed us with a wonderful time. Thank you for your prayers, I had limited times of anxiety that I was able to overcome.

Make-a-Wish Foundation was so generous to give us this opportunity for a much needed vacation. It is a special time we will never forget.

Tuesday, May 23, 2006 8:18 PM CDT

Long time, no update!!! We have been busy and tired around the Hargenrader house.

We are still adjusting to life at home after the return from our Disney trip and Alex's hospitalization.

Alex's clinic appointment went well yesterday. His platelets were 34! The last time he was at clinic his platelets were 17. Alex's red cells remained the same and his white count went down.

I have so much that I would love to share with everyone about our Make-a-Wish trip. It was so nice. On our way to Orlando, we got upgraded to first class!! Alex's first airplane ride was in the first seat in first class, eating a fruit and cheese tray!!

The Make-a-Wish foundation gave us buttons with their logo on it to wear for the duration of our trip. Whenever we would go to Disney, or Universal, we would show our pins and we would get free parking, free stroller rental and be the first in line on every ride. It was a very special priveledge. Not having to wait in line is such a blessing because kids like Alex can't wait in the heat and the crowds like normal children can.

We stayed at a place called "Give Kids the World". It is the most wonderful place. Disney, Sea World, Universal and several other corporations help sponsor this wonderful village for children with life-threatening illnesses.

It is a place where everything is clean, handicap accessible and very fun. Craig is going to set up a link on our website so that you all can see the pictures. They have a train station that looks like it is made from giant tinker toys!! Alex was in seventh-heaven! It takes 900 volunteers a week to run this village.

Each family is given a villa to stay in. Each villa has 2 bed rooms, two bathrooms, a kitchen and living area, a washer/dryer and a whirl-pool tub. The Village puts snacks and drinks in each kitchen. Everyday someone comes to the door to deliver a gift to each child that stays there. They also make sure that if you need medical help ASAP, you can get it. There is a merry-go-round, and water works,a castle of dreams and a movie theater that shows a different family movie every day.

Mickey and Minnie come to visit and every family has a portrait taken with them.

I'll have to tell you more about our trip tomorrow. Alex is getting ready for bed, so I have to go!!

Wednesday, May 17, 2006 9:08 PM CDT

Hi Everyone --

It's been a very busy week. Craig had the flu and I was busy trying to unpack, do laundry and repack for our trip to the hospital.

We checked into RB2 last night and Alex received 2 adult units of washed platelets in order to prepare him for getting his mediport today. The docs were hoping to get his platelet level from 17 to 70-75. The Lord was with Alex because after his transfusion his platelet level was 130. The docs and the lab thought maybe that was a fluke, but they went back and drew more labs and hand-counted the platelets and 130 was correct!! The nurse drew more labs at 4:00 a.m. this morning and the platelets held on at 120!!

We were finally taken back to the PACU at 10:45 a.m. and Alex was taken into the OR at 11:30 a.m. Dr. Parry came out of the OR around 12:40 p.m. and told us Alex did great and that the broviac was successfully removed and the mediport was placed successfully. Believe it, or not, we were allowed to come home this evening.

I am very anxious to tell you all about our trip to Give Kids the World/Disney World. It's been such a crazy week that I haven't had a chance to go into details. Craig is going to set up a link on our web page with our vacation photos this weekend. I'll go into all the details of our trip within the next couple of days. We had a great time!

Talk to you soon!

Monday, May 15, 2006 4:56 AM CDT

Hi Everyone,

We returned home on Friday night from a fun week at Disney World.

I'll have to fill you in on the details later because Craig is really sick with the flu. Please pray that Alex does not get it.

Alex is scheduled to report to Rainbow 2 tomorrow evening so they can pump him full of platelets. Early Wednesday morning he will go to the operating room and have his broviac removed and a mediport put in. We may not come home until Thursday if Alex has platelet issues.

I'll keep you posted.

Friday, May 5, 2006 8:27 AM CDT

Happy Friday Everyone!

You won't hear from us next week while we are in Disney World. We probably won't have access to a computer and we are not taking ours with us.

Tomorrow is the BIG day. I'm still a little nervous, but I am surrendering that to God. Alex has some petichia on his face and several bruises on his body. That is one of the things I don't like about short-sleeve weather -- you can really see how bruised he is. I just want to make him a t-shirt that says "My parents don't beat me, I have low platelets!!!!"

I am hoping this trip is a fun, stress-free time for the three of us. Alex needs it just as much as Craig and I do. He has been very difficult to deal with behaviorly this week. He is gritting his teeth and punching and hitting. I think the seclusion has finally got to him. Yesterday we had a friend over and he was having difficulty sharing and, in my opinion, bullying a bit. I know some of it is his age, and some of it is that he hasn't had to share anything with anyone in a long time.

Sometimes he acts so angry that it worries me that the disease has come back, or has really harmed him mentally. Yesterday he just kept punching me and telling me to shut up. I think some of his issues stemmed from the fact that I have had to give him Sudafed to dry up the fluid in his ears. He is very sensative to medication. Yesterday was so bad, I cried several times, became extremely anxious and then I had a horrible nights sleep. Sometimes I wonder if this situation isn't going to break me forever.

I am clinging, and I do mean clinging to God right now. Begging for wisdom, peace and rest. By next week at this time I am hoping to have a whole new perspective on things.

By the way, Alex is scheduled to have his broviac taken out and a mediport put in on May 17. The way it stands right now, we will probably be staying in the hospital for a night or two so that they can monitor his platelet levels.

Thanks for your prayers, that is what keeps us going.

Tuesday, May 2, 2006 7:58 AM CDT

Good Morning Everyone.......

What a crazy day yesterday was!!! Lot's of running around to visit doctors.

First, we went to Clinic. Alex's white count was 10.1 -- that's good -- it is in the middle of the normal range. His red cells were 11.6 -- good and in the normal range. His platelets fell to a 13......bummer. Dr. Villella did not see the need to transfuse him with platelets before our trip because platelets only last a couple of days in our bodies, so Alex wouldn't be covered over all the days of our trip to Disney. We know if things get really bad with him, he could get a transfusion while we are in Florida. PLEASE PRAY that that will not happen and that Alex's body will produce more platelets.

Here's something I didn't know....... Alex's red cells need to be at a good level in order to get on an airplane! While the plane is up.......oxygen levels in the blood go down!! The human body is so complex.......only God could have created such a complex thing.

After clinic, we hopped in the car (where I had a cooler full of lunch waiting) and headed to the surgeons office about 20 miles away. Dr. Parry feels confident that he will be able to take the broviac out and put a mediport in on the same day.....YEAH!! That means only one trip to the operating room. We may have to stay a day or two in the hospital if Alex's platelets are too low. Alex will definately have to have a transfusion of platelets before going into the O.R. We may have to stay overnight at the hospital just to be sure if he starts bleeding for some reason they can stop it right away. I have to call and get his name put on the surgical schedule today.

Our trip to Orlando is still on. A limo picks us up on Saturday morning at 11 a.m. Please pray that I will not experience any anxiety. Because I have been secluded along with Alex, I tend to get overwhelmed when I have to leave the house.

Last week, during my Bible study, God really comforted me with this verse....Isaiah 61:3 to comfort all who mourn, and provide for those who grieve in Zion -- to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will become oaks of righteousness, a planting of the Lord for the display of his splendor.

Thursday, April 27, 2006 7:48 AM CDT

Our hearts are so heavy today. Yet another child that we walked the halls of Rainbow 2 with has passed away. That is eight children in 10 months. Delonte, Timmy, Gillian, Zachary, Alex, Jordyn, Cassie, and now Kevin. Kevin was seven years old and in first grade. He had a blastoma tumor that was on his spine and in his brain.

I know in my heart of hearts because I truly believe in God that these children have no more pain and live with God in a much better place. However, as human parents with human emotions, our hearts ache and we can barely function. Craig and I are trying to cling to each other and to God right now. Sometimes the pain of this trial is unbareable. I want so badly to lend my support to Kevin's parents by going to his furneral, but I just don't think I can do it. Being in the situation that we are in, it's all too easy to put yourself in their place. If God wants us to go, I pray that he gives us the strength to do it. I really don't want Kevin's parents to think they are alone.

The only people that truly understand what a family goes through when a child has cancer is another family whose child is going through the same thing.

I read an article in "Guideposts" this week about a cancer survivor. When I read this, part of me was horrified at what Alex has endured and part of me is so thankful to God he survived it. Then, there was a portion of the article we could really identify with. I read the article to Craig and he thought I should share it with you. Here it is....."Chemo. Even today my body reacts just to the word. The pain and the nausea are so intense that it can feel like your soul itself is being poisened. In the heaviest period of my treatments, I would throw up the minute I walked through the hospital doors because my body knew what was coming.

But the worst of it was the lonliness. Even though family and friends visited all the time, the illness made me feel cut off. I felt like I'd died without leaving the world. While my friends went on with their lives, I entered a place I never known existed before: a place that wasn't life, but wasn't death either. A no-man's land of white hospital walls and an isolation so deep it sometimes felt like not even God could reach me through it."

We know that God has reached us many times and in many ways through our family and friends. God is our source comfort. Some days we just feel so oppressed that it is hard to reach out for the Source of Comfort. We have to remind ourselves on days like today of the scripture that says we are "hard-pressed, but not crushed, persecuted but not abandoned". God promises never to leave us or forsake us and we are clinging to that.

Alex's Make-a-Wish trip is coming up on May 6-12. We are going to Disney World. It's hard to imagine having a good time, but it may do us good to get away.

Tuesday, April 25, 2006 7:36 AM CDT

Good Morning.....

Alex had a somewhat short visit at Clinic yesterday. To us, three hours is a short visit.

His counts were pretty good considering that he is battling what could have been a fatal infection. We have one more delivery of I.V. antibiotics coming today. Tomorrow will be his last full day on antibiotics.

His white count is slightly above the normal range and his platelets, though still low, are holding steady. His red cells have gone up on their own without the help of medication or a transfusion!!

Dr. Villella told us yesterday that they were all very surprised that Alex got sepsis so far out from transplant. The origin of the infection is different than it was the first time he experienced sepsis. The bacteria that Alex contracted is water and soil born. It is also a bacteria that can be contracted when a person has been hospitalized over a prolonged period of time. Alex was not be hospitalized, therefore, we have to assume it was water or soil born.

Alex is at big risk for infections because of the broviac, so Dr. Villella and I had a half hour conversation about what to do about the broviac. The broviac is a God-send in many ways because it keeps Alex from having to be poked with a needle. However, it also can be a huge source and cause for infection because it is a foreign object in his body. After going back and forth discussing whether Alex could endure being stuck with a needle and sometimes I.V.'s or not, a decision was made. On May 1, we are going to consult with Alex's surgeon. The plan is to remove the broviac and replace it with a mediport. A mediport sits underneath the skin and poses less risk for infection. There is also less involved in maintaining a mediport. The downside is, Alex will have to be poked with a needle to access the mediport when he requires a blood draw. They use numbing cream, but still, he'll have to get use to a new procedure.

When it comes time for the surgeon to remove his broviac, it will be an all day affair. First, they will have to pump him full of platelets to prevent excessive bleeding. The procedure will take place in the operating room. Alex may have to go to the OR twice. It all depends what the surgeon is comfortable with. Dr. Parry will either take the broviac out and insert the mediport on the same day; or, he may choose to take the broviac out one day and insert the mediport a week later. Sometimes it is better to let the body heal a little bit before "installing another piece of hardware".

It's all in the Lord's timing and we will take it one day at a time.

Wednesday, April 19, 2006 8:08 AM CDT

We are home!

Bottom line -- Alex has sepsis. Sepsis is a bacterial infection in the blood stream that is deadly. The last time Alex had sepsis he ended up in the PICU.

This infection came on so suddenly it was scary. Alex had been in the backyard on Saturday playing with the hose and "cleaning the grass".

Alex has been sleeping in his own room in his big boy bed for over three weeks now. Craig usually lays with Alex for a few minutes and after Alex falls asleep, Craig gets up and goes to bed in our room. Twenty minutes later Craig came into our room, where I was asleep, and told me Alex was shivering, shaking and moning. I went downstairs to get the themometer. Alex's temp was around 100. I immediately called the doctor and they said to take him to the ER.

Craig drove 90 mph and we didn't stop at any red lights.

The ER took us in right away. Alex wasn't real responsive, his temperature climbed and his blood pressure dropped. At one point Craig and I didn't think that Alex was being treated quickly enough, so we started asking questions. The ER was trying to decide if Alex should go to the PICU or RB2. The ER was able to give him the atomic bomb of antibiotics right away, where if we would have gone up to RB2, we would have had to wait for the pharmacy to deliver the antibiotics. Starting antibiotics right away is crucial.

After the anitbiotics were started, the ER made the decision to transfer us to RB2. They took really good care of Alex and watched him throughout the night because his pressures were still reading low. On Easter morning, Alex woke up in a good mood. He just layed around all day. Later in the day we were told that his cultures grew Graham negative bacteria.

On Monday, the docs told me that we did the right thing by bringing him in ASAP because he definately had septic poisoning in his blood stream.

God really had his hand on Alex. The fact that Craig woke up and was able to identify what was going on is a miracle. We were calm and acted quickly -- again, a miracle. Alex recovered extremely fast and was riding the pink bike around RB2 with Sara Mae by Monday morning. The doctors were shaking their heads and laughing.

I have to give Alex I.V. antibiotics three times a day for the next 10 to 14 days. The exact origin of the bacteria is still unknown -- we should find out today. Alex may have to endure going to the operating room and having his broviac removed, and then a week or so later, having it replaced.

We know that once again God was merciful with Alex's life. I had a good cry this morning.

Please continue to pray for us and for all our friends on RB2. I'll keep you informed of any new developments.

Sunday, April 16, 2006 8:44 PM CDT

Hi Everyone, (Lisa here)

A quick note from Barb��they had to rush Alex to the hospital late last night, he had chills and a fever. She said Craig was driving 90 mph on the way over and is convinced he would be a good Nascar driver.

The doctor came in this evening while I was on the phone with her. He told them Alex tested positive for Graham Negative which means he does have infection in his bloodstream. He said it was a good thing they brought Alex on to the hospital so quickly because it would have gotten worse. They had already started him on the mega antibiotics and he was feeling a little better today but not a lot. They will be at the hospital for a few days but don�t know how long at this point.

Wednesday, April 12, 2006 7:12 PM CDT

What a surprise, and what good news!!! Alex's platelets were 25 today!!!! YEAH!!! Much to our surprise, the platelets increased by 10,000!!!! If you remember, his platelets were 15,000 10 days ago and today they are 25,000. Alex is probably making more platelets then his counts show, but because he has so many bruises, they are being used up.

His white count is now back in the normal range and his red cells are about the same, so that is good too!

The nurse came at 9 a.m. and when she saw Alex's face she said WHOA!! THEN, later this afternoon, he banged the side of his face on one of our side tables. What can I say? He is ALL boy!

Right now he is running back and forth in the hallway. I should probably make him put on his bike helmet......just kidding......I think.......

Please continue praying that those platelets keep increasing and that the mother cells start being produced.

Tuesday, April 11, 2006 9:05 PM CDT

I'm just about to turn in for the night, however, I thought I would leave a little update.

The nurse is coming for an unscheduled visit tomorrow morning. Last night Alex did not want to go to bed, so he was screaming and crying. This morning when he woke up, his entire face was covered with petichia!! I immediately phoned clinic. Apparently, any strain, like crying so hard, can cause such a reaction.

I am praying we do not have to go into clinic for a transfusion.

I'll keep you updated!

Monday, April 10, 2006 7:07 PM CDT

Hi Everyone,

I hope everyone has had a good Monday. Alex and I did. We didn't have to go to Clinic today! YEAH!! Alex has a couple of bruises on his head from being a bit of a wild man in the basement this weekend. I'm ready to pad the entire basement with rubber! I'll be glad when we put carpeting down there.

Craig's parents came to visit this weekend, so Alex had a good time with Grammy and Grandad -- especially because Grandad told him there were no rules and Grammy didn't think there should be a scheduled bedtime!

Alex did give us a little scare on Saturday night. Alex fell asleep while Craig was holding him. Alex woke up and said his tummy hurt and he threw up all over the place. The poor baby. Thank God it was an isolated event. He woke up on Sunday morning and he was fine.

It's suppose to be 72 degrees here tomorrow, so I think we'll head out to the patio to play. I'm ready for Spring!

Talk to you soon.........

Thursday, April 6, 2006 6:46 AM CDT

Good Morning Everyone,

Hang on, this is a long entry!!

Alex is doing well, he's a little bruised from the low platelet level, but he is happy and energetic!

I am sharing this with the humblest of hearts, because I know and God knows all of my short-comings. Over the past couple of months I have been learning a valuable lesson. It wasn't a lesson easily learned -- and trust me, I am STILL LEARNING. Alex getting cancer is not the path in which I would have chosen to learn this lesson. However, I truly believe that God can work through even the most painful trials if I let Him. Sometimes allowing God to work has been the hardest thing for me to do. I don't understand why Alex has has to endure cancer and everything that goes along with it. We have been isolated from people and activities that we enjoy. That has been hard and at times I felt unfair, but God has shown me otherwise. The only way I can describe this lesson is that it is both painful and freeing.

Yesterday's entry in "Streams in the Desert" really spoke to me.....here it is.....

"Go inside and shut the door behind you and your sons. (2Kings 4:4) The widow and her two sons were to be alone with God. They were not dealing with the laws of nature, human government, the church, or the priesthood. Nor were they even dealing with God's great prophet Elisha. They had to be isolated from everyone, separated from human reasoning, and removed from the natural tendencies to prejudge their circumstance. They were to be as if cast into the vast expanse of starry space, depending on God alone -- in touch with the Source of miracles.

This is an ingredient in God's plan of dealing with us. We are to enter a secret chamber of isolation in prayer and faith that is very fruitful. At certain times and places, God will build a mysterious wall around us. He will take away all the supports we customarily lean upon, and will remove our ordinary ways of doing things. God will close us off of something divine, completely new and unexpected, and that cannot be understood by examining previous circumstances. We will be in a place where we do not know what is happening, where God is cutting the cloth of our lives by a new pattern, and thus where He causes us to look to Him.

Most Christians lead a treadmill life -- a life in which they can predict almost everything that will come their way. But the souls that God leads into unpredictable and special situations are isolated by Him. All they know is that God is holding them and that He is dealing in their lives. Then their expectations come from Him alone.

Like this widow, we must be detached from 'outward' things and be 'attached inwardly to the Lord alone' in order to see His wonders. 'from Soul Food'

It is through the most difficult trials that God often brings the sweetest discoveries of Himself."

"God sometimes shuts the door and shuts us in,
That He may speak, perhaps through grief or pain,
And softly, heart to heart, above the din,
May tell some precieous thought to us again."

Tuesday, April 4, 2006 7:12 PM CDT

OK! I finally have a moment to update the website!

First things first. Alex's platelets went down from 21 to 15 and his red and white cells are both below normal. Dr. Villella explained to me that it had been a while since Alex's platelets were below 10. He said that hopefully in a couple of months we will be able to say that it has been a while since his platelets were below 20. Patience, patience, patience!! Excuse me while I talk to myself!

Dr. Villella also said that beginning in May, he would like Alex to start getting out more. YEAH!!! As long as he has the broviac, he will not be allowed to go swimming. Also, with low platelet levels, his activity will have to be carefully monitored. That will be easier said than done -- he's a boy!! Alex will be so excited to be able to play with the children in the neighborhood and at church. It almost feels like we are going to have a taste of a more normal life around here.

As you can see from the new picture that Alex successfully turned four years old! Be sure to check out the photo album, we have several new pictures for you all to see.

Friday, March 31, 2006 7:08 AM CST

Good Morning Everyone,

I have a busy day planned today. First, I have to bake a birthday cake. Alex is turning four years old tomorrow -- April 1!! Believe it, or not, he has chosen a basketball theme this year. We did a Thomas/train theme last year. I am going to attempt to make a 3-D basketball cake today.

Occassions like this always make me take a look back. It reminds me of the piles of rocks that God would tell people in the Old Testament to lay down as a reminder of where they had been.

Last year, we had gone to clinic and Alex had received a blood transfusion, and by that evening, he was in the hospital with a fever. We spent his third birthday in the hospital because of the side-effects of chemotherapy.

WOW! What a difference a year makes. Except for a few bruises and the broviac, he looks like a normal child. He has so much energy. Alex has such an infectious laugh. I'm tearing up as I write this because I realize by looking back how much Alex has had to overcome and how very precious he is to Craig and to me. I am so thankful that God has seen it fit to let him live another year. Last year, I could hardly sing "Happy Birthday" to him because the lump in my throat was so huge.

Alex is very strong-willed. When he is given a time-out, most times, I have to hold him facing away from me. But when the time-out is over, his tender heart comes shining through and he hugs and kisses me and tells me he is sorry.

I love listening to him talk. When he has something to tell Craig and I he will say "turn your face to me, I have something to tell you." Or, he will say "I have a question to say to you."

Yesterday, he saw the ball-shaped pan that I am going to bake his cake in and he took it off the counter top and put it on his head! I treasure these moments.

When I look at the precious times, and even difficult times that we have with Alex, I am thankful for the priceless gift he is to us. It is so hard for me in all my human nature to imagine that God loves him even more than we do.

I pray that we have many more years to celebrate with Alex. As happy and thankful as I am to have Alex alive and with me today, I never stop thinking about friends we have lost and the sadness that their parents face each day. Somedays it's hard for me to even enjoy our life because I can't stop thinking about the parents who are mourning.

Please pray for these parents and for the children who are still fighting the difficult battle of their illnesses. Pray for the doctors and nurses who take care of them -- they are truly special people and God uses many of them in our lives.

I'm going to go bake a basketball cake. We'll have to put an updated picture of the birthday boy on the site next week.

Talk to you soon.

Monday, March 27, 2006 4:46 PM CST

Good Evening All

Today was a short day at clinic -- YEAH!!! Alex's platelets went up from 16 to 21!! His red cells dropped slightly and so did his white count.

Dr. Villella informed us today that after next week, we can start cutting our clinic visits down to every other Monday. Yipppppppeeeee!!! I won't know what to do with myself!

Alex's platelets probably would have been higher had he not bumped his head THREE TIMES in the same place! We went to look at a mattress for him the other day and Alex went in with us, since no one was in the store. There was a little dip in the sidewalk and he tripped and fell HEAD FIRST into the concrete. Craig and I almost went coo coo!!! I told Craig that I'm going to start dressing Alex in a bubble wrap suit and make him wear a bike helmet everywhere. Do you think that is a little much???

The Lord has been teaching me a lot over the past week. I am learning that I have to make a conscious effort to surrender our situation to Him everyday.

Alex's nurse at clinic gave me a really great cd to listen to. The speaker was Chuck Swindoll -- I'm sure many of you are familiar with him. He was talking about the passage in Matthew referring to Jesus' yoke being heavy and his burden light and how we can cast our anxieties on Him. I am really thanking the Lord this week because I have been experiencing peace for the first time in a long time. I'm sure I will waiver from time to time, but I will also remind myself that I don't have to worry, I have some place to take it.

As always, thank you for your prayers. We love you all.

Friday, March 24, 2006 8:16 AM CST

TGIF!!

Alex has had a good week this week. He got a little bump and bruise on his head last night -- he was trying to balance his plastic trash can on his head and it fell off and hit him on the forehead!!! He is such a boy!

Craig wanted me to share this story with you. If any of you think it is gross, I apologize in advance. The other day I was changing a poopy diaper for Alex and Alex says (matter-of-fact like) "remember when my diaper spilled all over the carpet one time?" I said yes and that that was when he was going through chemo and he had c.diff. He then smiled and said "yeah, but now, it's all good!"

C.diff is a really nasty illness, but Alex has put that behind him and "it's all good!"

I am working on having Alex's attitude about things! He is so positive and funny.

Alex doesn't seemed to be as bruised this week as he was last week, so we are hopeful that his platelets will be higher this Monday than they were last Monday. I'll keep you posted.

Until then, hope everyone has a good weekend. I know we are looking forward to spending time together as a family.

Tuesday, March 21, 2006 7:59 AM CST

Good Morning,

We had a long day at clinic yesterday. They were so busy. Cold and flu season is taking its toll on everyone, so there were a lot of "walk-ins" at clinic. Alex was hooked up to an IV pole for a couple of hours in order to administer Pantadamine. This drug keeps him from getting pneumonia.

Alex was so bruised yesterday. To look at his body you would think Craig and I were beating him. I thought for sure that this week he would need a transfusion. I am happy to report I was wrong. His platelets went up a little! Last week they were 14 and this week they are 16. His red cells went up too! Last week they were 10.9, this week they were 11.1. The red cells are just slightly below the normal range. His white count is pretty good too -- it is 6.5. Thank you for the prayers.

I was reading this morning about praying and believing. I have told the Lord I believe and to help my unbelief. In God's timing, I am praying that Alex's mother cells will start appearing and that his bone marrow will fully recover.

Well, Alex is awake and he is ready to play!!

Friday, March 17, 2006 8:10 AM CST

Hi Friends,

Alex is still hanging on to the cold that sent us to the emergency room last Sunday. Craig and I also have managed to catch the cold too. What can I say? We are a family that shares everything. Alex and I are at the tail-end of the cold and Craig seems to be at the beginning of it.

We were watching a St. Judes special last weekend and Marlo Thomas explained that a "common cold" isn't common to a child who is immunocompromised. Don't we know it.

Morning and late at night seem to be the most bothersome times for Alex because he coughs a lot. Otherwise, he is energetic and happy. Right now, believe it or not, he is watching "Charlie Brown Christmas". He loves Charlie Brown. Craig just took some recent pictures of Alex with his Charlie Brown doll. I'll have to tell him to put them up on the website.

Over the past couple of weeks, Craig and I have been reading Psalms 23. I must admit, I have never meditated on that passage at length. I was talking to our pastor this week about it and he reminded me of the fact that Psalm 23 is all about knowing the "Shepherd". One of the verses that sticks out to me is "yeah though I walk through the valley of the shadow of death, I will fear no evil". We have definately walked through the valley of the shadow of death over the past 15 months. We have definately experienced fear. It's a tough lesson to learn not to fear sometimes. We have "feared" losing our son. I think that is normal, but we don't have to live in a constant state of fear.

On the flip side of that is that we don't have to fear because God can give us peace and comfort us while walking through the valley.

We are so thankful and relieved that Alex's scans were clear. We trust this will be the case from now on.

Please pray that Alex's body will start to produce the mother cells that make his counts go up. The doctor explained to us on Monday that the disease in Alex's body was so severe AND the chemo was so aggressive it may take a really long time for his body to recover.

Hope you all have a wonderful weekend! Talk to you next week!

Monday, March 13, 2006 12:00 AM CST

GOOD NEWS!!!! Alex's scans are clear!! He is still not producing the mother cells that are needed in order for his bone marrow to fully return; however, there is NO EVIDENCE OF DISEASE!!! His platelet level is still hanging steady at 14,000 (should be 150,000-400,000). Alex's red cells have dropped also, so he is anemic right now. He really does look good in spite of everything.

The MRI on Alex's femer is unchanged -- which is good. The MiBG, the scan that specifically targets neuroblastoma, did not light up on the femer. That is a good sign that the "hot spot" is not neuroblastoma and indeed is oxygen deprivation to the marrow in the femer.

Dr. Villella was very matter-of-fact when he was relaying the news to us today. Craig reminded me that Dr. Villella is a scientist and he knows the reality and statistics of neuroblastoma. I think Craig and I are more than aware of those statistics too, however, we have faith that God is able to heal Alex completely. Alex's next set of scans will be in June sometime. Until then, we will count our blessings.

Thank you so much for your prayers. God has heard our prayers and continues to be faithful.

Sunday, March 12, 2006 8:23 PM CST

Good Evening....

We spent most of the day today in the ER with Alex because he has had a fever on and off since Friday. It all started Thursday morning -- he woke up stuffy and coughing. I figured he had picked up a cold after spending three days running around the hospital. On Friday, he was up at 4:00 a.m. coughing and he had a low temp. I called Clinic and they told me to keep them updated throughout the day and not to give him any Tylenol. He had no energy all day, and he didn't eat anything either -- he didn't even play trains. His temp finally broke on Friday evening.

On Saturday morning he had no temp and he had lots of energy all day. This morning his temp went up to 102.3 and he fell back to sleep about a half hour after he woke up. His cheeks were flush and he just wanted to be held. I exchanged a couple of phone calls with the docs and it was decided we should bring him into the ER. We escaped having to go to RB2 and stay over night. The docs made arrangements for Alex to get an IV antibiotic and blood cultures and then to be sent home.

We got home at about 8:00 p.m. Alex is in the tub right now. As soon as he gets out, it will be off to bed so that we can get up to go to Clinic in the morning.

I'll update the website ASAP tomorrow to let you all know what the scans and the biopsy results are.

Thanks again for your prayers and your words of encouragement.

Thursday, March 9, 2006 6:25 PM CST

Hi All

Today was a little more difficult than yesterday. Craig and I both got teary-eyed when Alex was sedated. He was under sedation for 3 1/2 hours today. He always looks helpless when he is sedated, and somedays are just harder than others on this journey of ours. We are tired today.

We are hoping that the weather is as warm as they say it is going to be this weekend. Maybe we can get outside and go for a walk, or go down the street and watch the trains go by.

We will be receiving the test results on Monday morning at Clinic. Please pray that the Lord continues to sustain us.

Thank you so much for the encouraging notes on the guestbook and email, it keeps us going.

Wednesday, March 8, 2006 5:18 PM CST

Thank you for your prayers today. We got through the first set of scans.

When we walked onto the third floor Sedation Unit and the nurses and docs all yelled hello to Alex. He waved to everyone and announced that he was there to get his "sleepy milk". The docs and nurses always tell us how cute Alex is because he handles things so well.

Craig and I were talking this morning about the fact that Alex doesn't realize that not every child gets "sleepy milk". This is his "normal". We truly think it is evidence of God's grace that he handles things so well.

We ran into Dr. Villella after Alex's scans and he said that he would probably have some results back by Friday, but the bone marrow biopsy would take until Monday. We then decided that it would be best if Craig came to Clinic with us on Monday so that we could get the results together and in person.

Neither of us slept very well last night. We ended up getting out of bed very early and praying together before we left for the hospital. There are days when we literally feel the burden of all of this through pains in our chest. Trust me, it is enough to drive us to our knees....and it does :)

Well, it's dinner time.....gotta go.....more tomorrow!

Tuesday, March 7, 2006 6:30 PM CST

Hey Everybody.......today was pretty uneventful. Alex was scheduled to receive an injection of radioactive dye today. We arrived for our appointment and one of the radiologists came out and asked if he had taken some drops (I can't remember the name) before coming in order to protect his thyroid. I told her no. She went back the hall and came back out to me and said that they were going to have to page the doctor and possibly put off the tests. Needless to say, I was a little disappointed. At first I was wondering why they didn't tell us about the drops six weeks ago when the tests were scheduled. (feeling a little annoyed) Then, I told the Lord that I knew I wasn't in control and that he would have to take care of it. We sat for an hour and twenty minutes and FINALLY the radiologist came out and said that the doctor could prescribe the drops for the next six days and everything should be fine. WHHHHHHHEW!!!!

Alex nearly gave us heart failure tonight when he fell down about 8 steps, head first. Thank God he wasn't hurt, not even a bump on the head.

Please pray that God sustains the three of us over the next couple of days or so. First of all, we are praying that Alex is still free of neuroblastoma. Second, we will probably have to wait several days for the test results. I am really trying not to worry. I know that I cannot change the outcome of these tests by worrying. I just keep telling the Lord that I love my son and I want to keep him around for a very long time.

Thursday, March 2, 2006 7:49 PM CST

Hello Everyone

I thought I would give you all an update on what has been going on this week. The nurse did not come today to check Alex's counts because she's coming on Monday. We will be going to clinic on Tuesday instead of Monday because of all the tests that we have to be at the hospital for next week.

The nurse will come out on Monday to do a blood draw in order to find out if Alex will need platelets on Tuesday. Tuesday Alex has an appointment to be injected with radioactive dye and then its off to clinic. On Wednesday and Thursday he will have an MiBG, CT, MRI and a bone marrow biopsy. Craig is taking those days off of work so that we can get Alex through this as a family. I'm so glad Craig will be there.

Something I was reading in Streams in the Desert yesterday really hit home.

"Your situation is filled with uncertainty and it is very serious, but it is perfectly right. The reason behind it will more than justify Him who brought you here, for it is a platform from which God will display His almighty grace and power"........"He will not only deliver you but in doing so will impart a lesson you will never forget."

There was more to the entry, but those were the things that stuck out to me. Our situation is definately filled with uncertainty and is very serious. I pray that I don't miss the lesson that God is trying to teach me. One thing I think God is trying to teach me is total and complete trust in Him.

I'll try to keep you all updated as much as possible next week. We covet your prayers.

Monday, February 27, 2006 6:14 PM CST

Lots of ups and downs.........more downs than ups this week. Alex's platelets went down to 14, his red cells went down to 10.9 and his white cells are 7.3. Dr. Villella said that sometimes the counts yo-yo. I just wish his bone marrow would recover.

I'm trying not to be discouraged or worry too much. I'm learning that I need to pray for God's grace to be sufficient for the day. It is so easy to worry about Alex's health because we face this life and death issue everyday. Being at the end of Alex's treatment is such a weird feeling. On one hand he is off of all of the medication that makes him feel so miserable. On the other hand, we have done all we can do for him for now.

Last weekend Alex wanted to watch the video of himself riding on Thomas the Tank Engine last Spring. When we put the video on, the date flashed up on the screen as being February 19, 2005. The day we watched the tape was February 19, 2006. Craig and I just looked at each other. What a difference a year makes. Alex looked so bad last year. He was a lot thinner, he was almost bald and he looked really pale. Right now he looks so much better. He has really dry scabby skin because of the Accutane, but eventually that will clear up. He has a full head of hair -- which we have been "spiking" with hair gel. He's so smart and he loves for me to read to him.

These are things that we are so thankful for. God has been so faithful to grant us these miracles. Last year we weren't sure he would be with us this year.

Next week, March 8th and 9th Alex has several tests to monitor his progress thus far. Please pray that all of his scans will be clear. The bone marrow aspirate, MiBG, PET, CT and MRI will all be very telling.

One day at a time......one day at a time.......

Thursday, February 23, 2006 4:19 PM CST

Good news! Alex's platelets made a BIG climb from 9 to 20!! YEAH!! Normal range is from 150-400, but the fact that his platelets more than doubled is cause for celebration. Thank you for your prayers. His red cells are holding steady at 11, but that is a little below normal. His white count was 7.7 which is in the normal range.

Alex still has petechia on his neck due to scratching his dry skin. We are still dealing with some behavioral stuff too.

We are all looking foward to Spring and being able to get outside and play with other children. Cold and flu season is giving us cabin fever. Alex has been snooting and coughing again this week. We are not sure if he is getting sick again, or if it is allergies.

That's all for now because Alex needs me!!

Monday, February 20, 2006 7:07 PM CST

Hello Everyone --

We were a little disappointed at Clinic today. Alex's platelets went down from 20 to 9. That was a pretty big drop. Dr. Villella decided not to transfuse Alex because he wants to see what Alex's body is going to do. A nurse is coming out on Thursday to do a blood draw. Please pray that Alex's counts start coming back again.

Alex is officially done with the Accutane -- he never has to take it again. Hopefully the worst of the mood swings are over.

Craig and I were reading "Streams in the Desert" this morning and it was talking about waiting on the Lord. That is what we have to do right now -- wait. We hope and pray that the neuroblastoma never returns.

Please pray for Sara Mae, one of Alex's friends. She has been in the hospital for the past week suffering from c.diff. Her mom called me crying on Saturday because she is tired and discouraged right now. Also, another one of the kids we knew from RB2 passed away a couple of weeks ago. His name was Alex. He was 15. He had hoped to live long enough to get his drivers license, but he didn't. Needless to say Craig and I were very sad to hear this news. I was talking to one of the nurses today about this boy and she said that Alex was tired of fighting and ready to die. He had fought his battle for a long time.

My Alex is downstairs in the basement playing with his electric trains. Before he went downstairs we sat and read six books together. I've always enjoyed reading to Alex, but somehow tonight seemed sweeter.

Thursday, February 16, 2006 4:30 PM CST

GOOD NEWS!! Alex's platelets went up on their own from 14 to 20!! You wouldn't know it by looking at him because he has petichia all over his neck! The doctor said that the virus he just had really knocked his counts out.

There have been no changes in Alex's behavior. I think he feels miserable, however it still makes it difficult to handle the fact that he is physically takes it out on me.

I was reading "Streams in the Desert" this morning and it was talking about the fact that "sorrow may last for a night, but joy comes in the morning". This week I have felt like the sorrow is lasting for more than a night! Restraining Alex is physically and emotionally hard on both of us. He ends up crying and I end up crying.

When I say "restrain", I mean place him facing away from me on my lap and "bear hug" him. I was restraining him yesterday to keep him from hurting himself and from hurting me. While in that process, he was banging his head against my chest and I was trying to prevent him from hitting me in the face. By accident, I hit his mouth and it starting bleeding a little. I got a wet rag and stopped the bleeding. I was hysterical and ended up calling Craig at work. He reassured me that everything would be ok. I also talked to the nurses about it this morning over the telephone.

A few minutes after this happened, I asked Alex if he would like some breakfast. He turned and very calmly asked me if I had something to say to him. I asked him what he meant by that and he said "Mommy, you need to tell me that you are sorry for hurting my mouth." Everyone, including the nurses laughed. I have not found the humor in that yet.........trust me, I'm too tramatized. I just want my sweet little boy back.

Well, I have to go make dinner. Thanks you for your prayers. God is good.

Monday, February 13, 2006 5:49 PM CST

Good Evening Everyone --

Today was a short day at Clinic. We were finally able to successfully get a urine sample from Alex. We've had two failed attempts. The doctor needed a sample of urine in order to look for a neuroblastoma marker. Hopefully this test will come out negative.

Alex's platelet level was only 14 today, but his other counts are holding steady. He did not receive a transfusion of any kind today.

This weekend was very challenging. When Alex is on Accutane he becomes a child we hardly know. Craig and I struggle so much with how to react to his behavior. At one point this weekend he was hitting me and Craig stepped in and took him away from me. Alex started acting almost crazy. He was screaming and crying like he was mad. At the same time he is saying that he wants to calm down. I honestly don't think he knows what to do with himself.

Alex is taking his last round of Accutane and I have mixed feelings. This means we are at the end of his treatment. He still has to go to Clinic every week until his counts recover. We are relieved that he doesn't have to take the Accutane anymore, but we are also scared because we will not be actively doing something to fight the disease.

We are tired and discouraged right now. It's so hard dealing with the behavioral issues knowing that we have to disipline him, and yet realizing how miserable he must feel.

A nurse is coming on Thursday to check Alex's counts.

I'll keep you updated. Thanks for the prayers.

Wednesday, February 8, 2006 9:48 AM CST

Good Morning Everyone

Thank you for praying for my cousin. The surgery went well with no surprises and he may come home from the hospital today. He has to take radioactive medication, so he has to stay away from his family.

Alex continues to have a lot of energy and he is playing with his imaginary friend "Shokie". He is so funny. Craig and I were talking this morning, and Craig said we can learn so much from Alex. Yes, he has his moments because he is tired of taking medication and having medical procedures done, etc., but for the most part he is so happy. I think I have learned a valuable spiritual lesson from Alex. Alex is happy and care free on the days that he is feeling well and on the days that he isn't he just lets me hold him and rock him. Alex is secure because he knows that no matter what Craig and I are there for him in good times and bad. He just trusts us. When my faith is weak, I need to think about that.

I think we are all going to go get haircuts tonight. Alex's hair is thick and has a natural wave. This will be Alex's second haircut in six weeks! Who would have thought that we could be so happy over a haircut!!

Thank you for your faithful prayers, without them we would not survive.

Monday, February 6, 2006 5:02 PM CST

Today was a long day at Clinic. Alex's needed platelets for the first time in 5 weeks. He looks like he has freckles on his face, however, it is petichia. It took four hours for the blood bank to prepare and deliver the platelets. Alex had a really good attitude all day.

I feel like I have more to say, but I'm a little tired from such a long day that I forget what it was I wanted to say!!!

Please pray for my cousin Donald -- he's 34 and is married with a little boy. Last year we had asked that everyone pray for him because he was diagnosed with thyroid cancer. He had very serious surgery last year involving his vocal chords, etc. The cancer has returned and today at 2 p.m. he was having surgery to debulk the right side of his neck and later they will operate on his left side. Oh how I am tired of cancer.

That's all for now. I'll update you more later.

Friday, February 3, 2006 3:33 PM CST

Thanks for the prayers about the pills! We are having to be very creative sometimes, but Alex is taking the pills. Starting Monday we will be adding four more pills to the mix. Alex will be taking his last cycle of Accutane.

Alex's cough seems to be better. He has slept two nights in a row without coughing. We have still been up way too late, but we are going to be working on getting to bed earlier.

Alex needs me. Gotta go!

Tuesday, January 31, 2006 12:27 AM CST

Hi All

Sorry for the delay in the update about our clinic appointment yesterday. We had a bit of a difficult day for several reasons yesterday. Lets just say there hasn't been a lot of sanity in our house the past couple of weeks due to sleep deprivation.

Alex was up at 3:00 a.m. yet again because of coughing. His blood test results showed that his counts held steady. His platelets didn't go up, but they didn't go down either. His red cells went up due to the new medication the doctor gave him. The strange and yet a good thing is that Alex's white count is within the normal range -- it is 8.3. For the longest time his white count was stuck in the 2's and 3's.

Because Alex's cold is hanging on -- over 4 weeks now, the doctor thought it best to give him an antibiotic. This would not be such a big deal, except for the fact that it means six additional pills a day. The doctor prescribed 1500 mg of Amoxicillian. So now his is taking 7 pills, cough suppressant and nebulizer treatments. Next week we will add the last round of Accutane -- which is an additional four pills a day. Alex knows how to swallow pills and does well, however, he is rebelling about taking the pills. He is tired of taking medicine and who can blame him. Bribery doesn't work anymore, so we have to really have to work with him in order for him to take his pills.

Some good news. Alex's Make-a-wish trip has been scheduled for May 6-12. We are very excited at the prospect of a change of scenery.

Something to pray about......March 7,8&9th Alex will have a "full work-up" of tests. The tests are as follows.....MiBG, PET, CT, MUGA, MRI and a bone marrow aspirate. Ann, Alex's PNP, scheduled them far enough in advance that we were able to get early morning appointments. This is a blessing because Alex is not allowed to eat or drink before these tests. The anticipating and the waiting is one of the hardest parts of these tests. Please pray his bone marrow is clear of any neuroblastoma cells.

Also, when Alex finishes up this last round of Accutane there will be nothing else in the protocol to do for treatment. We will continue to go to clinic and watch his blood levels. Basically, we wait and hope and pray that the disease doesn't return. Please pray that Alex will remain cancer free. If the cancer returns, he will not be able to have chemo or radiation. We will have to go out of state to be treated. I'm reminding myself to be thankfui for today and not to borrow trouble for the future!

Wednesday, January 25, 2006 11:21 AM CST

Hi Everyone

After speaking with Alex's PNP yesterday, she realized that not even the hospital had straight codieyn syrup. So, it was on to plan B. We decided to keep him on the cough suppresant at night plus give him a breathing treatment. Alex had to do breathing treatments occassionally before he got cancer, so we already had the equipment we needed to do the treatments. In the morning Alex is taking Zyrtec. The good news is Alex was able to sleep all night last night. He coughed a little, but not enough to wake him up.

I ended up waking up around 5:30 a.m. with a sinus headache, but it was good that I did. My friend Catherine from NC emailed me and told me that Focus on the Family was broadcasting a show about surviving childhood cancer. I listened to the show from Monday and Tuesday on the computer yesterday. This morning, I listened to the last of the series.

There were three families who told their stories. Even though their children had different diagnosis' than Alex's, it was like listening to our story as they told their story. I've been beating myself up for the way that I have handled Alex's diagnosis at times. All of the parents that told their story had the same fears and feelings that Craig and I have had over this past year. Their stories didn't all have happy endings, but through it they learned to trust God. Dr. Dobson talked about the fact that cancer really jerks a families emotions around. One day you are hopeful and full of peace and the next you are fearful and can't see past your tears. The families talked about the people who surrounded and supported them. They also talked about the people who couldn't handle it and shyed away.

One mother talked about the clinic visits, low blood counts and about how we speak a different language than everyone else. One father talked about grasping for normalcy. All of the families talked about the fear of taking their children places and not being able to travel too far away from the hospital. WOW!!! That is us.

Sometimes I get mad at myself because I have cried so much. I want to be happy for Alex's sake. These parents felt the same way. They learned that we have to enjoy every moment with our kids. They learned to laugh. They learned to give up the control and lay their children at throne of God. They had to come to terms with their own mortality and that of their children.

Verses that have come into my path this week are "Weeping may come for a night, but joy comes in the morning." "Trust in the Lord with all your heart and lean not on your own understanding"........

Craig was listening to this same broadcast on the way to work and he said he could hardly see the road because of the tears.

One mom that I know who's son has neuroblastoma put a song on his website called "Who I am". She said it is a big encouragment to her when she is struggling through Mitchel's treatments. If you get a chance, go to his website and listen to the song. www.caringbridge.org/ok/mitchel. The song reminded me of who we are in the eyes of God -- I needed that.

I just want to say thank you to Catherine for telling me about the radio broadcast. Thank you Mark for all of your encouraging reminders. Thank you Faye and Lisa for your constant encouragement via emails and phone calls. Thank you everyone for your prayers -- that is what keeps us going.

Monday, January 23, 2006 8:43 PM CST

Hi Everyone --

Long story short, Alex did not get a transfusion again today. However, his platelets and red cells dropped because of the cold. His white count went up to 7.3

We have not been getting a lot of sleep for the last two weeks here at the Hargenrader house. Craig has been up a couple of times with Alex, but because he has to go to work, I've been sitting up in the lazy boy trying to sleep with Alex in an upright position. We've tried all the tricks to help with the cough -- like sitting in a steaming bathroom. Alex isn't allowed to have a humidifyer in the house because the moisture can breed bacteria.

The doctor prescribed codieyn syrup for him to help him sleep at night. We just spent the past two hours trying to get this prescription filled, but none of the drug stores on this side of town carry straight codieyn without Tylenol in it. The doctor doesn't want Alex having the Tylenol in case it would mask a fever.

Craig and I have been up since 4:30 a.m. because of Alex coughing. Needless to say we are tired.

Thursday, January 19, 2006 10:49 AM CST

Hi Everyone --

Sorry for the delay in the update, with Alex being sick I have not had time to get on the computer. Thank you for your prayers. We did not have to go to the hospital. Alex ran a low-grade temp for about 24 hours and the fever seems to be gone. I have slept on the Lazy Boy for the past two nights with Alex because of his coughing. We have given him a cough suppressant, but it isn't lasting as long as it should. Apparently, this particular cold seems to be hanging on with everyone who has contracted it.

Dr. Villella told us on Monday that the petechia on Alex's neck is probably caused by him coughing so hard. Petechia are little hemmorages that show up on Alex's skin when his platelets are low. It amazes me that coughing can cause petechia!

I have more to say about some things I have been learning over the past couple of weeks, but motherhood duties call! Thank you again for your prayers. We are so happy to be at home and not at RB2!

Tuesday, January 17, 2006 1:50 PM CST

Hi Everyone! I don't have much time to update the website today because Alex has a low-grade temp. We are keeping an eye on him at home for now.

We received what we think is good news today. The MRI has remained unchanged. The radiology docs don't think that the cells look like cancer cells. The consensus is that the abnormal cells are still consistent with the condition caused by steroids.

Well, I need to go take care of Alex. Please pray we don't have to go to the hospital tonight.

Monday, January 16, 2006 4:29 PM CST

Drum roll please! Alex's platelets went up from 11 to 21!!! Even with a cold his platelet level went up! His red cells stayed about the same -- Dr. Villella said he thinks the red cells didn't go up because of Alex's cold. Alex's white count was 6.3, which is up a little and within the normal range! We are so happy and thankful. Thank you all for praying. God is good.

Alex's cold has subsided enough that he was able to have the MRI done today. I'm not sure when we will get the results -- hopefully tomorrow sometime.

Craig and I were following behind the sedation team as they were pushing Alex on a bed down to MRI. Craig made the remark that no matter how many times Alex has been sedated he still has to pinch himself. He's been sedated between 30 and 40 times. How did this happen? This year has been the hardest time of our lives. I was reminded again last week during my quiet time that nothing happens to us that is not filtered through the hand of God first. I'm really trying to meditate on that.

As soon as we get the results from the MRI, I'll let you know. Bye for now.

Friday, January 13, 2006 11:12 AM CST

Alex's platelets seem to be hanging on because he has had no outward signs that would have caused us to return to clinic for a transfusion.

We have not had a whole lot of sleep this week. I ended up getting the cold that Alex has. Everytime Alex would lay down he would start to cough. After three nights of sitting up in the recliner sleeping, Craig took a shift. Last night I was up with him from 12:30 a.m. to 4:00 a.m. We've given him cough medicine, but he is so congested that when he lays down he coughs.

The MRI that Alex was suppose to have last Monday has been rescheduled for this Monday. Please pray that his cough subsides so that he can go through with the MRI. The waiting is so difficult sometimes.

I hope you all have a wonderful weekend.

Monday, January 9, 2006 3:12 PM CST

Something to be thankful for......Alex's platelets were 11 today, therefore he did not get a transfusion again today. I am suppose to keep an eye on him for the rest of the week. If I spot a lot of bruising, we'll need to take him into Clinic and they will have to transfuse him before next Monday. Even with Alex's cold, his white count was 6.3 and his red cells hung on at 11. Because he didn't need a transfusion, we ended up waiting at Clinic for four hours before walking over to the Sedation Unit.

We walked over to RB3 to sedation and Alex immediately started coughing. He has a dry, tickly cough. Dr. Haddad said he could not sedate Alex because he would most likely cough during the MRI. It was a little disappointing -- ok, more than a little. More waiting. I just had to say in that moment that God is the one in control of all of this. God knew before we went in there today what was going to happen. (or in this case what was not going to happen)

Alex was so good all day today. He wasn't allowed to eat anything until after the test. As soon as Craig picked us up, Alex said he wanted a cheeseburger.

Please pray that Alex's platelets will hang on until next week. We are all hoping that his marrow starts to produce more platelets and red cells.

Saturday, January 7, 2006 11:35 AM CST

Alex doesn't seem to be doing any better today. In fact, he is whispering because his throat hurts. The good news is he still has not suffered a fever. That may be a sign that his immune system is strong enough to be fighting his illness. I think this sickness could possibly be bronchitis. If his lungs are not clear on Monday, he won't be able to be sedated, which means he won't be able to get the MRI.

At times Alex tries to be active, but then he asks me to hold him. Right now he is laying in front of the fire place watching Uncle Richie's trains. On occassion he reaches over and moves his wooden Thomas trains on their tracks. Rich's train videos never get old for Alex. They really comfort him everytime he gets sick.

Please pray that this cold does not go into his lungs. If Alex's lungs are not clear on Monday, the sedation for the MRI is a no-go. We really don't want to have to put the MRI off any longer than necessary because we need to know if the abnormal cells are spreading/growing.

Well, Craig had to go into work today so I am flying solo. Bye for now.

Friday, January 6, 2006 1:26 PM CST

We've had a good time at home this week. I taught Alex how to play Candy Land and he loves it! We played three times yesterday and we've played twice today.

Alex woke up at 4:30 a.m. with a "croupe" type cough. So, he has another cold. The good news is Alex doesn't have a fever. I called the doctor and he said I could give him over-the-counter cough medicine. Alex has been playing with his trains and watching his train videos. He hasn't wanted to take off his p.j.'s today.

I've had a little bit of down-time this week to reflect on our trial and all that Alex has been through. I have realized the miracles that have happened along the way. I am so thankful that Alex is feeling good.

After our clinic visit on Monday Alex has a follow-up MRI on his leg. Please pray that the doctor's find nothing.
I'll keep you posted.

Tuesday, January 3, 2006 11:28 AM CST

Happy New Year! It was a happy day for us today. We were at clinic for only one hour!! Alex's platelets were 27!!! Dr. Villella said that means that the platelets he does have are probably his own!! We are so excited!! Alex's red cells hung on too -- 11.4 -- that is just .1 grams away from the normal range!! His white count was 6.3 -- normal range is 6.0 - 11.5!! YEAH!! I am so thankful to the Lord. We are hoping that this is the beginning of his bone marrow returning. Alex's ANC was 2,200!!

Craig and I struggled greatly over the past month with the thoughts of Alex possible relapsing. I don't think his counts would be going up if he was relapsing. We have an appointment next Monday at Clinic. At that time, they will be repeating the MRI to check on the abnormal cell growth. I know that our prayer is that it is no longer there.

I'm going to go because Alex and I are going to hang out. We'll probably go to the basement and play with his electric trains!

Wednesday, December 28, 2005 6:50 AM CST

I hope everyone had a good Christmas, I know we did. Alex opened his presents on Christmas morning in his own house. We even went to church on Christmas day. Last year on Christmas day Alex was weak and sick from chemo and losing his hair.

On Monday afternoon, my sister Sue, her husband and one of her sons (Ben) came to visit. I'm glad they are here. They ended up taking us to Clinic yesterday because Craig has some sort of virus. He has a low-grade fever, pounding headache, etc. Craig hardly ever gets sick, but I think he is so run down from the past year that he is just more prone to pick things up.

Good news!! Alex's platelets actually were above a 10 yesterday -- they were a 13. He had not had platelets in 8 days!! Dr. Villella said that if it wasn't for the holiday weekend, he would have not transfused him today just to "push the envelope". That means even though his platelets are low, he wouldn't get transfused just to see what his body will do. His white count went up to 4 AND his red cell count went up from 9.5 to 11!!! We are hoping this is the beginning of his marrow returning.

Alex is getting tired of going to Clinic. Ann tried to examine him today and he told her he wasn't talking to her and that he was too busy. Everything they asked him to do today was a battle. We don't have to go back to clinic until next Tuesday. I think we both need a break from Clinic.

I am really thanking the Lord that Alex's levels were so good! If his levels remain somewhat steady, Dr. Villella may choose not to transfuse him next week, which would mean a short day at Clinic!

Tuesday, December 27, 2005 8:45 PM CST

Good news!! Alex's platelets actually were above a 10 today -- they were a 13. He had not had platelets in 8 days!! Dr. Villella said that if it wasn't for the holiday weekend, he would have not transfused him today just to "push the envelope". That means out visit to clinic next week may be a very short one, if Alex's levels hold up!! His white count went up to 4 AND his red cell count went up from 9.5 to 11!!! We are hoping this is the beginning of his marrow returning.

Alex is getting tired of going to Clinic. Ann tried to examine him today and he told her he wasn't talking to her and that he was too busy. Everything they asked him to do today, it was a battle. We don't have to go back to clinic until next Tuesday.

We went to church on Christmas day. Last year on Christmas day Alex was weak and sick from chemo and losing his hair.

Truly something to thank the Lord for.

Thursday, December 22, 2005 4:25 PM CST

Merry Christmas! I don't think I will have time over the next few days to update the website, so I thought I would take the time now.

Alex had a blood draw done at home today. Melissa was our nurse today because Lisa is on vacation. Alex loves Lisa! Melissa was great too. Alex had to warm up to her first. He showed her his trains and his race cars. Finally, after about 10 minutes, he was ready to allow her to access his broviac.

Later this afternoon Kathy called with the test results. Alex's red cells fell from 12 to 10.9, his white count is still 3.7 and his platelets are 27. This means we don't have to go to Clinic until Tuesday. YEAH!!! The white count is at a good number, but his red cells aren't hanging on.

I am very thankful that we can stay at home for the next few days and have a nice Christmas. What a difference a year makes. Last year at this time Alex was SO sick and he was starting to loose his hair because of the chemo. This year he is doing better. He even got a hair cut on Monday night! This was the first time he's had a hair cut in over a year!!

I'll update you on Tuesday after Clinic. In the meantime we hope you all have a wonderful Christmas.

Monday, December 19, 2005 9:26 PM CST

We had one day at home and then it was back to the hospital -- this time for Alex's clinic appointment. He had to get platelets. We were all a little confused about Alex's condition today. According to the blood work, Alex's platelet level was only 7, however, he had no symptoms. His white count was 3.7. This was surprising due to the fact that Alex has a virus. Usually when Alex gets a virus his white count takes a nose-dive. This is something to be very thankful for.

Alex also had a follow-up appointment with his radiation doctor today. Dr. Kinsella showed me two CT scans, one from September, and one from December 8. He told me that there was improvement in Alex's organs. Dr. Kinsella also informed me that he had seen Alex's PET and MRI scans. Dr. Kinsella is on the Tumor Board that reviews the scans. He did not seem alarmed at the condition of Alex's leg. He asked Alex to jump up and down and he did without any problem. Dr. Kinsella said the fact that Alex could jump up and down was impressive due to the fact that he had vincrystine (a strong drug Alex was given in his chemo protocol). The doctor also asked Alex to walk down the hall to the toy box and none of us noticed any limping.

Craig and I feel a little better after today's appointment, but we are still afraid to let our guard down. We are learning to trust God one day at a time.

We are hoping to enjoy Christmas at home together as a family this year.

Saturday, December 17, 2005 7:58 PM CST

We are home after three days in the hospital. We have spent way too much time there over the past two weeks. All of Alex's cultures came out negative. He caught yet another virus which lowered his red cells and required him to have a transfusion today. The Docs wanted to give him platelets, but since I am "Doctor Mom" I asked them to hold off on the platelets until we go to Clinic on Monday. I have a method to my madness. Alex's platelets were 23, which is bad, but we've seen worse. Dr. Villella has been trying to keep him on a Monday schedule for platelets. Clinic is not open the day after Christmas, so the later he gets platelets this week the better.

I need to back up for a minute. Wednesday night before Alex went to bed, he had a fever of 100.1. I did not call the doctor because it was late and I didn't want to go to the ER in the middle of the night. I kept an eye on him and at 7:30 a.m. he still had a fever -- this time of 101.2. I called Clinic and Dr. Villella wanted him to come in and be examined. However, Kathy suggested that we pack a bag in case we stayed "over night".

When we got to Clinic, Alex's temp was 99.8 I thought good, they'll examine him, give him a shot of 24 hour antibiotic and we are out of here!! WRONG!!! When Dr. Weirsma came in to examine him, he told her he didn't feel well. He didn't want to play with his trains and he was trying to lay down on a chair in the exam room. Alex asked me to hold him and he fell asleep. In about 45 minutes, his temp went from 99 to 102.9. They acted very quickly, started him on IV antibiotics and Tylenol and called RB2 to get us a room. We waited about 4 1/2 hours for a room. Alex woke up and said he felt better and his fever started coming down.

When we arrived at RB2, they gave Alex a HUGE box of Thomas legos complete with a bridge and tunnel. They also gave him a train track with a pull-back Thomas and a book. Christmas came early for Alex at RB2!!

They did a chest X-ray yesterday, in case Alex had a pocket of pnuemonia. The X-ray was clear.

Dr. Villella talked to us about Alex's test results. After meeting with the Tumor Board, an orthopedic surgeon and the head of radiology (a nationally known doctor), the consenus is that the abnormal cell growth is probably not the neuroblastoma returning. HOWEVER, Dr. Villella is back to being cautiously optimistic and is not willing to "take neuroblastoma off the table". Dr. Villella feels this way because he has seen neuroblastoma due some crazy things. One of the things that the doctors suggested was that the lesion on Alex's femur is consitant with a condition that comes from prolonged steriod use. Alex has taken steriods, but only while taking chemo. Dr. Villella is also looking into the possibility that the Accutane could be causing this abnormal cell activity. Another thing they told us was that the bone looks like it is trying to heal itself.

The Surgeon and Radiologist recommended repeating the scans in eight weeks. Dr. Villella is going to repeat them in six weeks. In the mean time, we wait.

Please pray. We know we need to trust God to see us through this. The waiting is agonizing at times. We are scared. We don't want to lose our son.

Please pray for Mitchel -- the little boy we know of from St. Jude who is currently receiving treatment at Sloan-Kettering. He was hospitalized with a fever on Thursday also.

Thursday, December 15, 2005 1:15 PM CST

Craig, Barb and Alex are at the hospital. Alex has a fever and is being admitted. His fever is considered low grade right now and they are hoping the stay at the hospital will be overnight only. However, the doctor seemed to be some what concerned because Alex has been laying around and has not continued being active which has been his pattern with past fevers.

Please continue to lift them up in your prayers.

Wednesday, December 14, 2005 7:05 PM CST

The MRI is inconclusive. Dr. Villella is not convinced that the cancer has not returned. The MRI showed that there is abnormal cell activity in the bone marrow above the right knee in the femur. He said that the scans have not light up like it typically does when neuroblastoma is present, but it could be that we have caught something in the very early stages.

Here is what we have told so far. The activity is in the marrow in the femur. Neuroblastoma is a very sneaky cancer that could show up anywhere. Dr. Villella is taking the test results thus far and presenting them to the Tumor Board on Thursday morning. Dr. Villella said he is going to talk to the Tumor Board about doing a biopsy. This poses a little bit of problem because when they do a biopsy it is with a large needle. Alex's bones are small and there is a possibility that doing a biopsy could result in fracturing his leg.

If the cancer is back, Alex will not be able to endure chemo because his bone marrow is too weak, therefore, we would have to go elsewhere for him to be treated. i.e., NIH, Michigan, Cincinnati.

We are trying to take it one step at a time. We are scared, but trying to put our trust God. I'll keep you updated as soon as I hear anything. We would appreciate your prayers.

Tuesday, December 13, 2005 7:46 AM CST

I'll start with some good news. Alex's white count and ANC is high enough that he does not have to wear a mask, and he can start going to a few places. We've gone to church the past couple of weeks. We still have to be very cautious because it is cold and flu season. For instance, Alex is still not suppose to be around people who are coughing and sneezing -- this limits him from being around a lot of children at one time. I asked Ann his PNP if I can take him to the small grocery store around the corner during the day when the store isn't busy and she said yes. Of course we will be taking the Clorox wipes along to disinfect the cart!!! McDonald's and Chuckie Cheese -- a BIG no no!! Basically, we have to use discretion.

It's so hard finding a balance because Alex's platelets were a four yesterday and he was very bruised. So he can go some places, but his activity is limited. UGH!!! Alex is a normal little boy who likes to run around, but if he falls and gets hurt, or even crashes into another child, it could mean getting a platelet transfusion. I wonder why I am a nervous wreck part of the time????

Yesterday was a difficult day at Clinic because Alex decided, and I quote, he "didn't have time" to go through the whole process yesterday. Not only was I trying to talk him into getting an examine, but the nurses, Buddy and Santa had to help too. I think Alex is as tired of this whole process as we are. Some days he goes through the motions like an old pro, but yesterday was a whole different story.

This morning Craig and I were trying to pray through our fears and anxieties regarding Alex's MRI tomorrow. We both feel very mellow and quiet right now. We are just putting one step in front of the other and stepping out in faith.

Alex is awake and crying -- I better go.

Saturday, December 10, 2005 10:41 AM CST

Yesterday was the anniversary of the day Alex started chemo. Alex was also having a MUGA scan of his heart done. Craig was suppose to meet us afterwards in the Sedation Unit so that he could help me take Alex and our stuff to the car. That isn't exactly what happened.

Dr. Villella called Craig at work and asked him to meet him at the hospital so that he could discuss the results of the PET and CT scans.

Alex was being wheeled up from the scan and I was following behind the nurse and the doctor. I could see Craig at the end of the hall in the room. He stood up with his hands in his pocket and I didn't like the look on his face. I asked him what was wrong and he said that the doctor requested he come over to the hospital. Dr. Villella had already spoken with Craig by the time Alex and I returned to the Sedation Unite. Craig said that the PET scan had shown a "hot spot" on Alex's right femur. The contrast that is in Alex's body during the scan lights up any "abnormal cell activity". The doctor told us that he wanted to get an X-ray right away. He called us with the results at 10p.m. last night -- the X-ray showed nothing. Alex is scheduled for an MRI on Wednesday at 12 noon. The MRI is more sensative and will show if there is something there. If the MRI is positive, then we will do what Dr. Villella calls "the whole 9-yards". Alex will have to have a bone marrow aspirate and more definitive testing.

Our pastor sent an email out to everyone at church and he referenced Hebrews 4:16. That verse talks about boldly approaching the throne of God. That is what we will be doing. Of course we are praying that this is nothing, but if it is something, we are praying for the grace and strength to get through it.

Alex is oblivious to what is going on. He is running around and playing and having a good time.

I can't help but think that the Lord was preparing me for this earlier in the week. I have been reading a book called "Extraordinary Faith". It talks about the fact that faith has nothing to do with us and everything to do with God. Right now we have to have the faith that no matter the outcome, God will sustain us. I have really learned that Alex belongs to God before he belongs to Craig and I. That is a hard lesson for me to learn because I play tug-o-war with God all of the time. HOWEVER, leaving Alex in God's hands ultimately brings peace.

Thursday, December 8, 2005 8:27 PM CST

Alex had a good day over all today. He wasn't allowed to eat anything but clear liquids up until 11 a.m. He did really well. I reminded him this morning that he was going to get "sleepy milk" at the Sedation Unit. Alex said to me "I'm not getting sleepy milk at radiation because I am done with radiation."

Ankie picked us up and took us to Rainbow Babies (Thanks Ankie!) Alex was excited to ride in Mrs. Amos' truck! When we walked into the Sedation Unit, Alex acted like he owned the place! The nurses who had not seen him in a while wanted to touch his hair because it is so soft. He told everyone he was there to get his sleepy milk. The nurse asked him if she could get a blood draw and he told her to use the red lumen that it was better. The difference a year makes is amazing. He handled the situation like a pro.

After Alex was sedated, they had to insert a feeding tube for the CT contrast. Also unknown to Alex (thank goodness), he had to have a foley inserted to monitor his kidney function.

Tomorrow he has a MUGA scan scheduled at 3:00 p.m.. This test will monitor his heart function. Chemo has long-term side effects on the heart muscle, so Alex will be monitored closely for many years.

Thank you for your prayers. We should be getting the preliminary results of the CT and PET scans tomorrow. I'll let you know as soon as I hear anything.

Monday, December 5, 2005 7:11 PM CST

Good News!! Alex's platelet transfusion from Friday hung on -- his platelets were 50 today!! Still low, but not low enough for a transfusion!! YEAH!! That means he did not have to get a steriod, or Zantac today. His red cells were low, so he did get red cells today. The Benedryl made him grumpy. By the time we got home, we were both exhausted and we both took a nap.

Alex still may need to have a platelet transfusion at the end of the week, but Dr. Villella hopes that is not the case. We have to be at the sedation unit two times this week. Thursday and Friday we have CAT and PET scans scheduled. I think it is just a routine thing for the sake of the study. The weird thing about the dates of the scans are that it was exactly one year ago on these dates that he was having the same tests done in order to arrive at a diagnosis. I must admit that I am not looking forward to reliving that moment in time. Craig has been reminding me that I need to remember how far Alex has come since last year. I'll be reminding myself of that while Alex is being sedated.

Well, it's time for a little family time. I'll keep you posted.

Friday, December 2, 2005 5:43 PM CST

Hello from snowy Cleveland --

This week was a busy week for us. Two trips to clinic for Alex and a root canal for me.

Alex's platelet levels have been very low this week. We think it is due to the fact that he is receiving washed platelets. By the time the platelets are washed and ready for transfusion they are greatly reduced in volume. Dr. Villella thinks that because of this process, the blood bank may be washing away platelets. Long story short -- Alex isn't getting the volume of platelets he needs -- resulting in more transfusions. SO, not only did we have a visit to clinic today, but on Monday when he gets transfused, they aren't going to wash the platelets. I'm not looking forward to Monday. Because the platelets won't be washed, Alex will be premedicated with a steriod, Benedryl, Zantac and Tylenol. He feels awful when he is given steroids and Benedryl. He also acts out because he feels so miserable.

Alex's red cells have dropped twice this week. Monday will be a long day at clinic. On Thursday and Friday of next week, Alex is scheduled to have a CT scan and PeT scan. Next week is the one year anniversary of his diagnosis. He has come such a long way in one year. What a year it has been. I'm exhausted and amazed when I think about it. Thank you all for your prayers and support over the past year -- without them we would not have survived.

Monday, November 28, 2005 4:22 PM CST

We are home from Clinic. Alex's platelets were a 3 today. That is NOT good. He also got a flu shot and an injection to keep him from getting pnuemonia. Dr. Villella didn't give him the red cell booster today because he thinks it is inhibiting Alex's white cell growth. Alex's ANC also took a drop to 620. It's suppose to be around 3,000. Even after getting platelets today, his count was only 21,000 (normal 150-400,000). A nurse will stop by on Thursday to check his platelet levels. If they haven't held steady, we will have to go back to clinic this Friday in order for him to have another transfusion. The next time they give him a transfusion they are going to try NOT to wash the platelets so that Alex gets the volume he needs. This is a little scary to me.

Alex also has another cold.

I hope everyone had a nice Thanksgiving. We had a nice time with Craig's parents, brother, nephew, aunt and uncle. Craig's Uncle Rich was high on Alex's list of favorite people. Uncle Rich brought Alex his first Lionel train-- a model of the Polar Express. Craig and his father built a table in the basement for it. Needless to say, Alex has been in the basement ever since! It's the first place he wants to go every morning.

Our weekend was not without a little craziness. My father was hospitalized over Thanksgiving, but is now home and doing better. Then, Craig's Uncle and Aunt hit a patch of black ice on the way back to Pennsylvania on Saturday morning. The car spun backwards down a ditch, and flipped onto the roof. Thank God they walked away with only bumps and bruises.

We were also sad to hear that Zachary, a little boy suffering from neuroblastoma at St. Jude died on Thanksgiving evening. We were praying for him and following his website. Please pray for Zachary's parents. Zachary was only four years old.

On the flip side of that, another little boy I have mentioned on our site (Mitchel) received news that his bone marrow is clear!! His parents are so thankful to God. They would like everyone to continue thanking God and pray that the cancer never returns.

Never a dull moment. Please keep praying that Alex will start producing mother cells.

Monday, November 21, 2005 8:40 PM CST

Hi All --

Alex and I went to clinic today. He needed platelets. He was premedicated and everything went well. He was a bit of a handful at the end of the day because he had so much medication in his system. He wanted me to carry him, our three bags and Snoopy!! Thank God for wonderful nurses at clinic. Kathy walked a couple of the bags downstairs to the pharmacy. We picked up Alex's prescription and then we went home.

Alex had a lot of ups and downs today mood wise. The Accutane takes a toll. Not to mention Benedryl, Tylenol, Zantac, etc. Dr. Villella says he is doing well. We have scans scheduled for Dec. 8th and 9th. We are not expecting anything out ot the ordinary, but his disease is sneaky.

While we were at clinic today, we ran into a little boy and his mom that we were in transplant with. Kevin is 8 years old and he has a "blastoma" tumor that starts in the brain. His mom and I were talking and she told me that Kevin doesn't know it yet, but the disease is back. It is all up and down his spine. All I could say to her was that I would pray for them.

I answered the phone tonight and it was the grandmother of an 11 year old girl that spent 56 days in the hospital with us during her transplant. Her mother was just sentenced to 7 years in jail due to a drunk driving accident.

My friend Kathryn called today to tell me that her daughter Sara Mae(also a transplant patient)broke her arm. She just slipped and fell. The doctor said that steriods can weaken the bones and that is probably why it didn't take much of a fall to break a bone.

After I hung up the phone, I realized how many people in this world are hurting. It is overwhelming. I keep pictures of our friends from RB2 on the fridge so that I can see their faces everyday and remember to pray for them.

Please pray for these people. They are precious people who need God's grace and mercy.

Thursday, November 17, 2005 8:40 AM CST

We are home. We got home last night at 8:30 p.m. Alex is still sleeping, but I have a feeling he will be up soon.

It was a very rough couple of days. We never know what a day will bring. Alex went in for his usual platelet transfusion. He was premedicated, as usual. About 10-15 minutes into the transfusion, Craig noticed that he had some hives coming out on his face and Alex started pulling on his ears. His ears immediately swelled to at least twice their normal size. Then, Alex started crying and saying "mommy, my lip and my tongue are fat". He was also gagging because he couldn't breathe. Thank God our nurse was right there. She sprung into action immediately and before we knew it, we had a doctor and three nurses in the room giving Alex what he needed.

Alex's bone marrow doctor came in shortly after we were able to calm him down and told us that he had a bad reaction to the platelets. She said she had four reasons why she wanted to admit us to the hospital. Number one, it was life-threatening......she didn't need to go on from there as far as we were concerned. That night because the doctor had to give Alex steriods he was up until after 1 AM and eating the whole time.

Tuesday was awful. He had the steriods on board, plus he is back on the accutane, plus his red cell count was 7.9 which meant he was acting a little crazy. The poor child could not stand still. He was up and down, sometimes running in place. Then, he started with the infamous yelling of "shut up", then biting, hitting, banging his head. It was truly too much. We ended up staying another night because Alex still needed platelets.

So, yesterday, the blood bank "washed" the platelets, Alex was premedicated with Benedryl and Zantac and he did fine. RB2 doctors watched him for several hours afterwards and gave us the ok to bring him home.

Dr. Villella came into see us yesterday and he said that everytime Alex gets platelets, they will be "washed". Platelets are processed anyway, but they are now going to take further precautions to try to make sure he doesn't have an allergic reaction again.

Needless to say, this has taken a toll on Craig and me. We are exhausted. I know we have to trust God. Monday morning before we went into clinic, I read a devotional that was titled "God is in Control". The scripture for that day was 2 Corinthians 12:9. I keep seeing this verse. It talks about God's grace beeing sufficient and his strength is made perfect in our weakness. I am trying my hardest to hold onto that. I'm experiencing the usual anxiety after returning home from the hospital, plus I have one of my sinus headaches. I'm praying that God's strength will get me through this day.

Monday, November 14, 2005 8:47 PM CST

Hi Everyone,
Lisa here. Alex has been admitted to the hospital for 24 hours of observation. They were at clinic today. After receiving a transfusion of platelets he had a severe allergic reaction. Barb said his tongue, lips, nose, eyes and throat began swelling all of a sudden. He also had hives from head to toe. She said they gave him steroids, anti-biotics and epinephrine and were watching him very closely. She said the Dr. did not want them going home in case Alex had another reaction. She also mentioned Craig was able to be with her and Alex at clinic today. She was really glad he was there with them.

Sunday, November 13, 9:55 AM CST

Thank you for your prayers everyone. When I went to the doctor on Friday, they had the flu shot not only for me, but for Craig also.

A couple who volunteers for Make a Wish Foundation came over to visit us on Saturday. Before they came over, they asked if there was something that Alex really likes. I said trains. For those of you that know Alex and have been to our house, you know that that is an understatement. Both volunteers said they had never seen so many trains. They were asking Alex all kinds of questions like "what is your favorite food?". He answered mac and cheese, bananas and grapes. They asked him what is favorite color is and he answered "blue". They asked him what his favorite song is and he started to sing a song from a Christmas train video he has. He was even bobbing his head to the beat. It was really funny.

Right now his face is a little pale. We will have another long day at clinic tomorrow. Please pray that Alex will start producing "mother cells". These cells are so important because they produce red, white and platelet cells. If his body starts to produce these cells, he won't have to endure so many transfusions.

I'll give you another update after we get home from clinic tomorrow. Bye for now!

Thursday, November 10, 2005 1:30 PM CST

Not too much to report today. The nurse came by and Alex's counts have fallen. His red cells, even with meds (although he only has had one dose) are at a 10. His white cells are at 2.5 (they were 3) and his platelets are 58. (typical after a transfusion). We will need to plan on staying at clinic on Monday for red cells and platelets.

Alex's energy is great and he is still playing like a mad man!

My doctor's office called me today and told me that they ran out of the flu shot. Craig and I were both going to get one tomorrow. Craig tried to get one earlier in the week at work and they ran out too. Please pray that we will be able to get one. Alex is unable to get the shot because of his counts, so it is of utmost importance that Craig and I find a way to get ours.

Tuesday, November 8, 2005 6:49 AM CST

Good Morning --

Alex's clinic appointment went pretty well yesterday. No fat lip for Mommy this week. His platelets were really low again. They were 6 (normal range 150-400). His red cells fell to 10.6.-- they were 11.4 on Thursday when the nurse came by. (normal range 11.5-14.5) His white count was up! YEAH! It was at 3 -- on Thursday I think it was 2.4. That isn't much of an increase, and yet it is good because this is without any medication. What that menas is that Alex's body is producing white cells on its own!Speaking of medication, after seeing Alex's counts yesterday and the drop in red cells, Dr. Villella decided to give Alex an injection of a drug that will boast his red cell growth. This medication will hopefully prevent Alex from having to get so many red blood cell transfusions. Doctors often use this medication for people who for religious reasons cannot have blood transfusions. This tells me that it works.

I expressed my conncern over the drop in the red cells and platelets. Dr. Villella explained to me that the cold virus Alex had a few weeks ago is to blame for that. It absolutely amazes me that what most people consider a "cold" is no longer a minor issue for Alex. He really fell two steps back. I must admit that it can be really discouraging hearing news like that, but I know that we just have to keep going. Craig and I were talking about the fact that Alex hasn't had as many set-backs as some other children that we know. I pray this continues.

Please pray that Alex's counts will start to produce on their own. Also, Alex's friend Sara Mae was admitted to the hospital yesterday. She has been vomitting on and off for several days, but it is not the flu. They did a CT scan and ultrasound yesterday. Sara Mae's mom told me they think it my be her gall bladder. She's only three years old, but the drugs that she takes to keep her body from rejecting the bone marrow transplant can be hard on other organs. Also, it's not a simple thing to remove her gall bladder if that is the problem.

Alex is awake, so I better go! Have a good day!

Friday, November 4, 2005 6:25 AM CST

First things first, is that the cutest train engineer you've ever seen, or what? The person in the picture with Alex is Ann. She is Dr. Villella's PNP. When she came in the exam room on Wednesday dressed like a butterfly, Alex said "Ann, you look beautiful!" -- WHAT A CHARMER.

The nurse came by yesterday and did a blood draw and Alex's counts were good, so no Clinic until Monday!!! This is Alex's fourth day off of the Accutane. He is doing much better. In fact, he fell asleep around 9:30 a.m. last night. When he is taking the Accutane, he has a very difficult time falling asleep. He likes the night life, he likes to boogie!! There have been nights when it has been 11:30 p.m. and he is WIDE AWAKE, and this is without a nap in the afternoon.

The past couple of days it has actually been sunny here in Cleveland. Alex and I have taken full advantage of this gift. As soon as the sun is on the other side of the house and Alex's play area is shaded, we go outside and play on the patio. He rides his pedal car all around. He's having a friend over today. Katie is coming to play. He'll be so excited. Everytime she comes over to play, he asks Katie's mom Grace to read him the story "Katy the Caboose Who Got Loose".

I was reading "Streams in the Desert" this morning. God really speaks to me through this devotional. It's not always easy to hear what he is saying, yet I know I have to listen. The reading started out by saying "there is nothing that makes the Scriptures more precious to us than a time of "captivity." The old psalms of God's Word have sung for us with compassion by our stream at Babel and have resounded with new joy as we have seen the Lord deliver us from captivity and "restore our fortunes...like streams in the Negev" (Ps. 126:4)

It goes on to say "A person who has experienced great difficulties will not be easily departed from his Bible"......"Over the old and tear-stained pages of his Bible, he has written a journal of his experiences in words that are only visible to his eyes"..."Through those pages he has come to the pillars of the house of God and each of those pillars become a remembrance for him of some critical time in his life.

"In order to receive any benefit from our captivity, we must accept the situation and be determined to make the best of it. Worrying over what we have lost or what has been taken from us will not make things better but will only prevent us from improving what remains. We will only serve to make the rope around us tighter if we rebel against it."

Wow......What a struggle not to worry. I worry so much sometimes that it almost paralyzes me (and makes me really grumpy). I can make it hard to seek out God and read my Bible. It's even a struggle to be happy about Alex's progress because I am afraid it's too good to be true. We are not out of the woods. The disease could return. I can't control any of it, so why do I worry? It's not productive and it steals the precious moments I do have with Alex. Instead, I should pray that God will "restore my fortune". Here on this earth, my fortune is Alex and Craig. They are the greatest gift God has given me.

Friday, November 4, 2005 6:25 AM CST

First things first, is that the cutest train engineer you've ever seen, or what? The person in the picture with Alex is Ann. She is Dr. Villella's PNP. When she came in the exam room on Wednesday dressed like a butterfly, Alex said "Ann, you look beautiful!" -- WHAT A CHARMER.

This is Alex's fourth day off of the Accutane. He is doing much better. In fact, he fell asleep around 9:30 a.m. last night. When he is taking the Accutane, he has a very difficult time falling asleep. He likes the night life, he likes to boogie!! There have been nights when it has been 11:30 p.m. and he is WIDE AWAKE, and this is without a nap in the afternoon.

The past couple of days it has actually been sunny here in Cleveland. Alex and I have taken full advantage of this gift. As soon as the sun is on the other side of the house and Alex's play area is shaded, we go outside and play on the patio. He rides his pedal car all around. He's having a friend over today. Katie is coming to play. He'll be so excited. Everytime she comes over to play, he asks Katie's mom Grace to read him the story "Katy the Caboose Who Got Loose".

I was reading "Streams in the Desert" this morning. God really speaks to me through this devotional. It's not always easy to hear what he is saying, yet I know I have to listen. The reading started out by saying "there is nothing that makes the Scriptures more precious to us than a time of "captivity." The old psalms of God's Word have sung for us with compassion by our stream at Babel and have resounded with new joy as we have seen the Lord deliver us from captivity and "restore our fortunes...like streams in the Negev" (Ps. 126:4)

It goes on to say "A person who has experienced great difficulties will not be easily departed from his Bible"......"Over the old and tear-stained pages of his Bible, he has written a journal of his experiences in words that are only visible to his eyes"..."Through those pages he has come to the pillars of the house of God and each of those pillars become a remembrance for him of some critical time in his life.

"In order to receive any benefit from our captivity, we must accept the situation and be determined to make the best of it. Worrying over what we have lost or what has been taken from us will not make things better but will only prevent us from improving what remains. We will only serve to make the rope around us tighter if we rebel against it."

Wow......What a struggle not to worry. I worry so much sometimes that it almost paralyzes me (and makes me really grumpy). I can make it hard to seek out God and read my Bible. It's even a struggle to be happy about Alex's progress because I am afraid it's too good to be true. We are not out of the woods. The disease could return. I can't control any of it, so why do I worry? It's not productive and it steals the precious moments I do have with Alex. Instead, I should pray that God will "restore my fortune". Here on this earth, my fortune is Alex and Craig. They are the greatest gift God has given me.

Tuesday, November 1, 2005 6:58 AM CST

One word, exhausting!! That would describe our clinic appointment yesterday! Alex was due for pantanemine -- a drug that he is given by IV every 30 days to prevent him from getting pneumonia. His red cells were down to 8.6 and his platelets were a big 8. His white count came up slightly on its own. The virus he has is dissapating so his white count should start coming back.

Between the anemia and the accutane, Alex was difficult to deal with yesterday. Dr. Villella was trying to explain some changes and regulations that are new to being able to obtain the accutane and Alex started yelling shut-up at me and then hit me in the mouth with his train -- giving me a fat lip. He had so much medication in him yesterday that I know it was making him miserable. He definately was not himself. He was acting so weird at times. For instance, he didn't want to stay dressed. I had put over-alls on him and an engineer hat. The nurses loved it. Alex was having fun at the beginning of our visit. As soon as the drugs hit his system, it was down-hill from there.

Once we got home, the meds were wearing off and he felt like playing, etc. Alex came over to me and hugged me and kissed me and said that he was sorry for hitting me and saying shut-up. Sometimes I think he is fighting with himself and the way he feels on the inside. He is only three and he can't always express what he is feeling as a result of his treatments.

This morning I was reading in "Streams in the Dessert". "The psalmist said 'I waited patiently for the Lord; he turned to me and heard my cry". (Ps. 40:1) And what God did for the Old Testament saints, He will do for believers down through the ages, yet He will often keep us waiting. Must we wait when we are faced with a threatening enemy, surrounded by danger and fear, or below and unstable rock? Would this not be the time to fold our tents and leave? Have we not already suffered to the point of total collapse? Can we not exchange the sweltering heat for 'green pastures....[and] quiet waters' (Ps.23:2)?"

"When God sends no answer and "the cloud remain[s]," we must wait Yet we can do so with full assurance of God's provision of manna, water from the rock, sheleter and protection from our enemies. He never keeps us at our post without assuring us of His presence or sending us daily supplies."

When we talk to Alex about his tumor, we refer to it as the "enemy in his tummy". We are waiting while faced with an enemy. We have no choice. Yet, God has sent us "daily supplies". When I read that I thought about the many friends that have, in the midst of our discouragment, called or came to visit, or made us a meal. I have had friends leave their families behind in different states in order to visit with us. Friends who have taken the time to make us meals. Wonderful neighbors who mow our lawn without saying one word.

I am reminding myself today that even though it is so scary and difficult waiting for Alex's progress, or possible relapse, God provides His presence or daily supplies.

Sunday, October 30, 2005 8:00 PM CST

Hi Everyone

We've had a pretty good weekend. We were outside on the patio today enjoying the cool crisp Fall air. Fall is my favorite time of year. Alex was riding his pedal car all around the patio. He had a good time. He was giving his father and I near heart failure because he kept riding too close to the table and chairs. We were afraid that with the low platelets he was going to bump his head and we would be making a trip to the ER. Low platelets mean nothing to a busy boy.

Alex has been taking his meds like a real champ. He only has to take 2 doses tomorrow and then he is off of the Accutane for 2 weeks!! Alex has been difficult to deal with at times this weekend because not only are his red blood cells low, but the side effects from the medication cause lots of outbursts. Frankly, I am exhausted from dealing with the behavioral aspect of all of this.

Before we go to Clinic tomorrow, I am hoping to get up early enough to work on my Bible study. The chapter this week is "Sincere faith knows the source of its strength". I am anxious to be reminded of the true source of my strength. I have been reminded lately that even if I feel like we are just squeeking by, God is the one who gave us the strength to get through even the bad days.

Sometimes I forget that there is a whole world going on outside my house because I am so wrapped up in our situation. Alex has to be in seclusion for another year. It really limits interaction with others. Sometimes I feel so bad for Alex because even though he has adapted well to his situation, he talks to himself a lot. He also needs Craig and I to play with him, otherwise he doesn't play with other people. He is so good about playing by himself -- almost too good.

Well, I'll let you know how Clinic goes tomorrow. It should be an all day appointment -- he'll need red cells and platelets tomorrow.

Wednesday, October 26, 2005 10:04 PM CDT

Hi All --
Before I forget, check out the new pictures in the photo album. Craig finally had a free minute to upload the pictures.

It has been a little rough around the house over the past couple of days. Alex is still having a rough time on the Accutane. He swallows the pills right down, but I don't think he feels well on it. He has the occassional outburst and yells shut-up and today he pounded his head into the floor in the family room. Alex also has "furry tongue" again. Luckily I discovered it before it got out-of-hand. Furry tongue is a fungal/yeast infection that comes from taking high-dose antibiotics.

Lisa, our home health care nurse is coming in the morning to do a blood draw. We are hoping Alex's counts are good so that we can hold off going to Clinic until Monday.

We are all still recovering from the yuckie virus we have, so I should probably sign-off and go to bed.

Monday, October 24, 2005 5:27 PM CDT

What a weekend........

Craig and I both came down with what Alex had. It hit me pretty hard. If I lay down in bed I start hacking up a lung, so I've been sleeping on the Lazy Boy.

My friend Kathryn and I went to Cassie's viewing on Saturday afternoon. It was more overwhelming than what I thought it would be. We saw Jordyn's parents there. It was really sad. I couldn't stay in the furneral home long enough to speak with Cassie's mother. It was just too much. It's so easy to put yourself in their place. My emotions are just too raw right now.

Alex had a very rough weekend. We have found that the Accutane is causing a lot of mood swings. Alex is acting like he did when he was on steroids. One minute he is fine and out of no where he is yelling shut up at the coffee table, or slamming his head into the counter top in the kitchen. It's so hard to know how to handle these episodes. We've been trying to keep him busy and distracted, but that only works for so long. If you all remember, he is two weeks on the Accutane and two weeks off for 6 months. Craig talked to the doctor today and we've decided to put him on a little bit of Ativan once a day on the weeks that he is on the Accutane.

Alex must feel terrible when he has these outbursts because he often cries and says that he wants to calm down.

Please continue to keep us in your prayers. It feels like we had one step foward and now we are two steps back.

Thursday, October 20, 2005 9:31 PM CDT

Well, we are home. Alex is doing well for the most part. He has a cold/virus of some type. Part of the reason we were admitted was he was running a fever, and part of the reason was that there had been a few children admitted for fevers after receiving platelet transfusions. Alex had several different kinds of cultures done to make sure that he had not contracted a disease from the platelets he had received. All of the cultures came back negative. We are very relieved. It's so hard to believe that a "simple cold" can hospitalize him. However, a "simple cold" is not simple anymore. It can lead to a number of different things because of his immune system being compromised.

I have some very exciting news......Alex has learned to swallow the Accutane!!!!!! Thanks to a very special child-life specialist by the name of Jenny. She started Alex out with small candy and worked him up to a tic tac and then she asked him if he wanted to try his pill. He gagged the first time he tried swallowing the pill. Twenty minutes later, he tried another one and it went right down!!! Believe it or not, this eliminates a lot of stress from our lives. This pill is SO important to Alex's health. The Lord was faithful in answering all of our prayers in this matter.

Monday night when we were admitted to the hospital, we were waiting for a room to be cleaned and one of our nurses came and got me and said that Cassie's mom wanted to see me. I went back to Cassie's room and there sat Jaime just watching Cassie struggle for every breath. I sat next to her and put my arm around her. I couldn't say anything. Watching Cassie struggle to breathe was so sad and painful. I could not believe that she was still living because she had been in this condition for so long. Cassie passed away just a few hours later. She was only 18 years old. She loved all of the children on the floor. One of the nurses on the floor told me that just a couple of weeks ago Cassie had been talking to someone who was newly diagnosed and was trying to comfort them. Cassie told the patient that they were going to get the best care possible and that the nurses are the best. The nurses on RB2 really are the best. Cassie was so beautiful and so soft spoken, and so kind. I will truly miss her. I feel priviledged not only to have known her, but to be there to say good-bye. Please pray for her family. They are going through a lot right now.

Twice now I have seen kids taking their last breaths here on earth. I keep thinking about the scriptures that remind us of the fact that we are all like grass and one day we will all whither away -- and the one about life being but a vapor. Also, verses talking about being refined by fire. (to that I say ouch!!) I have said to Craig and others this week that I feel like we live in a different world than everybody else. Craig reminds me all of the time that our responsibility in this situation is to allow God to change us for the better.

What a week. Craig and I both feel like we are coming down with what Alex has, so hopefully we will get some rest this weekend.

Again, God blessed us this week by our neighbors actions. Donna saw that Craig had just got a load of mulch in the back of his truck. She called me at the hospital and told me that the guys would put it where it was needed. Then, Patty, a woman Craig works with, took up a collection at work and told us to hire Molly Maids to come clean the house. I think I have a pretty good grasp on things around here right now, but I am going to save the money for a "snowy day" this winter. If Alex happens to need a lot of attention this winter from me, I will not hesitate to call Molly and her friends to come clean my house. When we got home, my friend Grace had made dinner for us tonight and Dean delivered it. Thank you all for such kind gestures. What wonderful friends you all are.

Some of the nurses have said that we may have to be admitted a few times during cold and flu season. I'm hoping we don't. As we were leaving the hospital today, some of the nurses were joking with us and saying Merry Christmas and Happy New Year because they don't want to see us back at RB2. I told them Happy Valentines Day and Happy Easter too!!! Please pray that we will be able to keep Alex from getting ill this Winter. Craig and I both need to get our flu shots ASAP.

I better go to bed. It's been a bit of a long day.

Tuesday, October 18, 2005 8:23 AM CDT

Hello Everyone,

Lisa here. Barb called me last night at 10:00 p.m. to let me know they were at the hospital. Alex had a fever and they were waiting for a room so he could be admitted. She wanted you all to know what was happening with them. They expect to be at Rainbow for 48 hours. Pray for Alex and Mom and Dad too.

Sunday, October 16, 2005 7:00 PM CDT

Hello Friends,

Alex has had a pretty good weekend. My nephew Teddy and his girlfriend came for the weekend. They drove to Michigan to the Penn State game and then came back to our house after. If any of you saw the game, you know how true PSU fans feel today. Alex kept Mallory and Teddy busy playing trains while they were here. They'll probably hear train noises in their heads for the next week!!

I think Alex's red cells are low because he as been exhibiting all the "classic" signs. He'll probably need platelets and red cells both tomorrow. We'll be at clinic all day, so I'll pack lots of trains and a lunch for us.

Saturday night, we had some sad news. Cassie (she's 18) has been in and out of the hospital with Alex. She has soft tissue tumors. Cassie's mom called me and told me that Cassie was in the PICU and that she didn't have long to live. Jaimie and I talked for a while. Jamie is a widow. Cassies father died years ago, leaving her mom with three little girls. Those girls are all teenagers now. Jaimie wanted to let us know about Cassie in case we wanted to see her.

I wasn't sure I could do it. I remembered how my friend Grace had reminded me that God is our Rock. A wise, wonderful woman, Marliese reminded Grace of that last week. Marliese survived Nazi Germany, so she knows what she is talking about -- she is a spiritual pillar and mother to many of us at church.

This morning I got up and was reading in "Streams in the Dessert" that we cannot allow Satan to make us fear during trials. The devotional referred to James 1. My friend Grace had told me last night that she had been meditating on James 1 this week. I read James 1 this morning after I prayed and asked the Lord to show me what he wanted me to do, inspite of my fears. The last verse of that chapter says that we should take care of orphans and widows. Jaime is a widow. I felt like we needed to go see Cassie. I called Jaimie to check on them and she said she would like if we came to see them. The hospital staff was trying to make Cassie comfortable, so they let her go back to RB2. Cassie hated the PICU. Because they couldn't "unplug her", the staff took a huge extension cord and stretched it from the PICU to RB2 to transport her. We called Nina and asked her to babysit and she immediately came over. (thanks Nina)

Seeing Cassie was hard, but the Lord really sustained me. I didn't have an anxiety attack. I talked to her and told he that we loved her and that Alex said "hi". She was resting comfortably with the help of some meds. Craig and I went out of the room to allow family to visit. We sat and talked to the nurses for a while and then it was time to say good-bye. There are no words to describe how we feel. I am thankful that we did go. We didn't say much, but we know from experience that you don't always have to. Cassie will probably not make it through the night. Please pray for her family.

I should go get ready for clinic tomorrow.

Thursday, October 13, 2005 9:07 AM CDT

Good Morning --

We had a little bit of an "anxious" moment on Tuesday. Alex starting fussing on Tuesday afternoon and I thought it was because he was tired from not resting during "rest time". I picked him up and sat on the rocker with him and I was trying to explain to him that it is important to rest sometimes, and then it happened.......he threw up all over both of us! It scared me to death. Under normal circumstances, you just watch and see what happens. When a BMT patient throws up, you don't know if it is nothing, or it is the start of something big. Of course this happened an hour AFTER the office closed. The answering service got a hold of one of the nurses and she told me to give him Zofran (anti-nausea med) and watch him. He didn't have a fever, so that was good. Alex seemed to feel better after he threw up and he actually ate dinner!

Alex was ok the rest of the evening. We think the throwing up may have been caused by post-nasal-drip. I have to admit that I was a little anxious and watching him for a fever in the middle of the night. I think the Lord is testing that whole "be anxious for nothing" lesson he is trying to teach me. Yesterday Craig and I both had sinus headaches, and I think Alex was feeling a little yuckie too. We just took it easy yesterday.

Today we are waiting for a nurse to stop by the house and do a blood draw. I am hoping and praying that Alex's counts are good so that we don't have to go back to clinic until Monday.

Well, I better go. I promised Alex we would get out the arts and crafts stuff today.

Monday, October 10, 2005 3:39 PM CDT

Good Afternoon Everyone....

Today was a good day at clinic. Alex's platelets were 19, so he needed a transfusion. The doctor took him off of two of his medications. YEAH!!! Then, Dr. Villella also said that he wanted us to try giving Alex the white cell growth factor once a week. Also, because we came home right away after clinic last Thursday, Dr. Villella decided to have a blood draw done at home this week. That means if his counts are good, we don't have to return to clinic until next Monday!!! A lot to be thankful to the Lord for.

We had a good weekend. We rented "Because of Winn Dixie". It was a very cute movie. Alex, Craig and I slept on the air mattress in the family room on Friday night. When Alex woke up on Saturday morning he said "we had a beautiful sleepover Mommy!" We also watched Penn State beat Ohio State on Saturday!! GO NITTANY LIONS!! It was such a cold, rainy weekend here. It was perfect for staying in for some family time.

I was thinking about last year at this time and how Alex was getting these "weird" fevers and how he was starting to sleep a lot. He was having several health problems that seemed minor, but didn't add up. What a year it has been. I was just reading Mitchel's website and his mom was talking about what a year it has been for them too. They are now in New York City getting treatment for Mitchel.

I know I told you last week about our little friend Zachary dying. From what I gather, he died of the same kind of poisoning that almost killed Alex. How blessed we are that God did not allow us to leave the hospital before Alex got sick. We were one day from going home back in July. We were told that the car ride to the hospital would have taken too much time. Once the sepsis poisoning sets in, it takes off like wild fire and can kill a person almost instantly.

It is so easy to be anxious about everything, instead of being anxious for nothing (Phil.4:13). This morning I read in "Streams in the Desert" about not fretting because it isn't productive. For me, this whole process has been about renewing my mind. It is so easy for me to stay in the pit in the midst of difficulties. Craig and I have endured such emotional strain watching Alex go through so much pain. Now that he seems to be doing better, there is a tendency for us to fret about his future -- to be afraid to be happy for the good times we are having with him. We still have to be very careful about exposing him to germs, especially until next year. Craig and I have to get flu shots. We are told to take a lot of precautions in order to keep him well. His immune system is still extremely week. However, God has reminded me to be anxious for nothing, but in everything, WITH THANKSGIVING, present your requests to him. We are thankful for Alex's good moments. Even with all he has been through this year, he is feeling better right now than he was last year at this time. Again, something to be thankful for.

Friday, October 7, 2005 12:21 AM CDT

Yesterday we went to clinic and Alex's platelets were at an all time high since transplant. They were at a 75!! Thank you for your prayers! God is good. We got home from the doctor by 1:30 p.m. I hardly knew what to do with myself. I actually made a nice hot dinner. Believe it or not, I was thinking after dinner how nice it was to be doing dishes in our own home.

Craig, Alex and I are going to get the air mattress out and have a sleepover in the family room with pizza and movies. We are all looking forward to that.

We had some more sad news this week. A little boy that was in the hospital for a transplant with us passed away. He wasn't even a year old. He had a genetic disease. His sister had a transplant earlier in the year. Please pray for this family. They still have to come back to clinic in order for Eva to be treated.

Needless to say, we have been sad about yet another loss among us. Four kids that we have known on RB2 have died since June. I'm trying to allow it to drive me to my knees instead of driving me to an anxiety attack.

Alex needs me....gotta go!!

Wednesday, October 5, 2005 7:10 AM CDT

Good Morning....

This is the second day in a row that we do not have to make Alex take Accutane -- Thank you Lord!! Alex has two weeks off of this regimen. We went to clinic yesterday instead of Monday because Alex had a PET scan scheduled. His platelet level was only an 8!! Please pray that Alex's bone marrow would start producing mother cells. We already know that this is going to take months. Alex's white count was 3.2. The doctor was pretty pleased with that count, even though it was a low count. He is still taking a growth factor to help his body produce the white cells, but he is only taking it two times a week. That means that his body may be producing some white cells on its own.

Alex was so good at clinic yesterday. He always is, but sometimes he gets really grumpy after having benedryl before a transfusion. He was a real trooper. Because he had to get platelets yesterday, we were running late for his appointment to have radioactive dye injected before the PET scan. So, instead of going directly to the sedation unit, they made us go to another building where nuclear medicine is. Alex was so sleepy, but he walked through three buildings and up and down a couple of elevators. He endures so much and yet he just keeps fighting. I'm so proud of him.

While Alex was having his scan done, I was waiting outside in the hallway. I was feeling anxious, but I prayed and was reading a book in order to distract myself. The Lord was faithful and sustained me. I'm still having trouble driving, but I am praying that God will help me to overcome this anxiety.

There was a woman waiting out in the hall with me, her name is Linda. She has just been diagnosed with breast cancer. We talked for some time, and by the end of our visit we hugged each other. I'm sure that I will bump into her at the ICC, since we are there so often. I told her not to be afraid to allow people to help her in her time of need and to get plenty of rest. She seemed to have such a good attitude about everything. Please pray for her.

I'm looking forward to a good day at home with Alex. Thank you so much for your prayers. With Craig's help, I was able to get my house back in order!! (just in time for Lisa's visit) I'm just trying to maintain it a little at a time.

Lisa coming to visit this past weekend was so encouraging and fun. Alex had such a good time with her. It's so funny, everytime friends of ours have visited, Alex charms them into playing trains with him all weekend!! Well, I'm going to hop in the shower before Alex wakes up. Have a good day -- CHOO CHOO!!!

Friday, September 30, 2005 8:26 AM CDT

Yesterday was a looooong day at Clinic. We got their at 9 a.m. and left at 5:30 p.m. Alex's levels were very low. He needed platelets, red cells and an IV injection of pantanamine (sp? - a drug that prevents him from getting pneumonia). Poor Alex -- everytime one of the nurses saw him yesterday, they would ask him if he had been eating chocolate. He had not been eating chocolate. The Accutane has cracked the corners of his lips so badly that they bleed all of the time. A low platelet level doesn't help with the situation either. His face is all dry and flakey too. Otherwise, he is doing well. He took the accutane pills twice yesterday without a fight!!! YEAH!! Of course, a little bribery always helps!! Craig and I know this is an answer to prayer.

We are looking forward to the weekend. My friend Lisa -- the person who started this website -- is coming from North Carolina to visit us. In fact, her plane should be landing right about now! God has given me such good friends. My friend Peggy came to visit in August. Both of these women left their children and husbands behind and went to the expense of flying up here to spend time with us. My heart overflows with gratitude for such good friends. Speaking of good friends......

Wednesday night while we were finishing dinner, we looked out the window and saw our neighbor Larry riding his tractor over to our yard. He and Stan (another neighbor) mowed our lawn. Craig has been trying to get to the lawn, but he was trying to finish some other projects inside the house. As if that wasn't enough, I called home from clinic yesterday to check our answering machine. There was a message from my neighbor Donna. She had made us dinner! When we got home from our 8 hour appointment, there was a hot meal in my oven, ready to eat!! It was delicious!!

I have been so discouraged and shedding a lot of tears the last couple of weeks. God has shown me through these wonderful, caring, thoughtful people that he sees me struggling. I cannot express to you in words how much our neighbors encouraged me. Thanks guys! You are the best!!

Alex needs me -- gotta go!!

Monday, September 26, 2005 4:23 PM CDT

We had a Clinic visit today, and guess what?? NO TRANSFUSIONS!!! His red cells were at a 9.9 which is still low and his platelets a 25 (low), and his white count 3.7 (again, low). However, the doctor wants to see what Alex's body is going to do by Thursday. Dr. Villella also took him off of the IV nutrition as of this Wednesday. I guess we are "testing the waters".

Speaking of the IV nutrition.......I had quite a scare on Saturday morning. Craig got up before 7 a.m. to go to Bible study with the guys at church. At 7:20 a.m. Alex's IV pump was beeping with a message that the feeds were down-ramping (coming to an end). I thought I would turn the pump off and the two of us could get some more sleep without the pump beeping again when the transfusion was through. WRONG! When I reached over to clamp Alex's broviac, I saw the end of the IV tube........then, when I tried to clamp his broviac, I felt something wet. I looked at my hand and it was covered in blood. I was a little startled -- to say the least. It's amazing how God just helped me kick into gear -- although, I asked God why this now when I am alone. I ran downstairs, grabbed saline and heparine syringes, ran back upstairs and tried to flush the broviac. Thank God it flushed. Alex woke up and said "mom, I have to get up, I'm all wet". When I stood him up, he was laying in an 8 inch diameter circle of blood with little clots all through it, and the left side of his shirt and paints were wet with blood. He saw it and started to cry. I took him into the bath tub, removed his clothes and discovered that the left side of this body was stained by the blood. I called the doctor immediately and the transplant nurse assured me that he probably didn't lose has much blood as it looked like. I told her there were little clots all over the place. The fact that he didn't need a transfusion today is amazing, although his red cells were 11.4 on Thursday and they were 9.9 today. He probably had been bleeding for a couple of hours. I think what happened is that he was tangled in the tube and it disconnected one of the canulas, but there was still a canula piercing the end of the broviac allowing the blood to pump out of his body because the IV nutrition wasn't going in.

After I calmed both Alex and myself down, I took the sheets off of the bed and Craig came home. Needless to say, he was upset at the sight of it all. He asked me why I didn't call him -- I didn't have time. The beads of sweat were dripping from my head during the whole incident.

After that fiasco, we went to see one of Alex's friends from the hospital at her house. Sara Mae was trying to show Alex how to swallow his pills vs. chewing them. He is really starting to fight us on this matter. Please pray for him. It's so hard for a three year old to understand how important these pills are. They really are a matter of life and death for him.

Last night we went to Grace and Dean's house and had an spontaneous pizza dinner. It was wonderful to see Alex playing with his friend Katie. It was so nice to sit and talk to Dean and Grace. They were a big encouragement to both Craig and myself.

Alex is still napping, so I better go check on him.

Friday, September 23, 2005 7:13 AM CDT

Good Morning --

Sorry I haven't updated in a few days. We are still adjusting to home life. Keeping up with the house work, etc., has been a real challenge. I am so close to calling Molly Maids, it isn't even funny! (but you can laugh if you want to) Alex wants me to play trains and read books to him, so that puts the housework on the back burner. I'm taking my own advice and playing. It's difficult at times because the house should be very clean and virtually dust free for the sake of Alex's health.

Alex is doing really well. He is still bruising from low platelets though. Yesterday I had one of my infamous migraines and was too sick to take Alex to Clinic, so Craig took him. The doctor has decided to start weening Alex off of the IV nutrition. He's been eating some, and it isn't good to keep them on the IV nutrition too long because it can damage the liver. (as if we don't have enough damage from the chemo/radiation to worry about) ANYWHO!! Alex's platelet level was a big 15 yesterday, so they "tanked him up" with a huge bag of platelets to get us through the weekend. His other blood levels seem to be improving. He is a bundle of energy!! Last year at this time he was losing energy and was getting fevers frequently. We didn't know it then, but it was the beginning of this horrible illness that Alex has had to endure.

In my last update, I had mentioned the six pills a day that Alex MUST take. God is gracious.......Alex has been taking the pills since Monday night. I'm so proud of him! It's so difficult to see him struggle to try to swallow a pill. The pill is the size of a Jelly Belly jelly bean. We can't crush the pill because it has liquid in it. Alex tries so hard to swallow the pills, but he just can't -- so he chews them!! They must not taste too bad, otherwise, he would put up a fight. He starts out by eating an orange tic tac, then he takes a pill. Last night he said "sorry Mommy, I just can't swallow it". I started to tear up. Everytime he gets through one thing, we throw him something else. God has given Alex such strength through this whole process. Craig said that there was some construction going on at the hospital yesterday, so they had to take a detour through the basement of the hospital in order to get to Clinic. They passed by radiation and Alex looked up at Craig and said "look! it's radiation -- we're all done with radiation". That's my boy!!

I've been so depressed lately. I think this whole situation has backed up on me. This past week I've really tried to pray and read my Bible -- that is the only thing that gives me strength. (Thanks Grace, Sharon and Mark for reminding me of that) It's so hard to find the time when life is still so crazy, yet this is the time I need it most. I have been trying to thank the Lord for the good things in my life -- the good moments, the friends. Craig drove me to the grocery store on Monday night. I had a list and was organized, but I still felt very anxious. I prayed my way through it and the Lord was faithful to help me. I'm thankful for Craig. He is such a good man. It's been difficult for him to balance work and home, but he tries so hard to be here when we need him -- and we have needed him a lot!! Alex really is doing well. His counts are low, he doesn't have many producing "mother cells", but he has a lot of energy. He smiles all the time and constantly tells us he loves us. He is such a gift and a blessing to us. I'm thankful that Clinic visits are only twice a week now. Most of all, I am thankful for the prayers of faithful friends. Your prayers keep us going.

Some of you have thanked me for my honesty in these entries. Sometimes I wonder if I am "too out there" with everything, but I also want to be very honest about what is going on. The girls at church are working through a Bible study in 2 Corinthians. The first part talks about being able to comfort those with the comfort we have received in our trials. This past week, at the end of the study, the writer of the study talked about us being clay pots -- the Bible talks about that too. She went on to say that we are clay pots with a lot of "cracks". As Christians, we think we need to cover the "cracks" and the imperfections, otherwise we won't be a testimony to others. WRONG!! This situation has shown me how many imperfections I really have. We have no choice but to be real. However, God's grace fixes those imperfections. I still have a long way to go!! The reason I am so real in my journal entries is so that anyone else going through something like this will see the struggles we have gone through in trying to work out our faith. I don't want anyone to think that we are breezing through this because we believe in God. God is what gets us through the difficulties. Trust me, there are days when I struggle with that concept, but then God sends me a friend, or a call from my sister to remind me otherwise.

Sorry for such a long entry, but I missed a few days so I thought I would catch up!!!

Monday, September 19, 2005 7:37 PM CDT

Well, we ended up going to Clinic today instead of Tuesday. Last night when we were about to put Alex in the tub, I noticed even more bruising so I called the doctor. Dr. Weirsma thought it would be best to bring him in today for transfusions. It was SO GOOD that we did because Alex's levels were so low it was scary. His platelets were 5, his white count was 2.6 and his red cells were 7.9. Needless to say, he ended up getting platelets and red cells today. WHAT A DAY!! We got to Clinic at 9:30 a.m. and left at 5:30 p.m. His blood pressure was high at the end of the day because they had given him so much volume in fluids. The doctor gave Alex lasics (sp?) to get him to release some of the fluid and bring his blood pressure down. It was a long day!!!

Alex was put on accutane today. He'll be on it two weeks on and two weeks off for the next six months. There is a big challenge that comes with this medication. Alex has to swallow 3 pills, twice a day. Alex has never had to take pills before. This medication does not come in liquid form and drawing the fluid in the pill out will result in an inaccurate dosage. Please pray that Alex will be able to take these pills without a problem. Should there be any neuroblastoma cells that appear, the accutane could mature the cells and kill them. There could be side effects like water retention in his head, or liver damage. Again, we have to let it up to the Lord.

Sunday, September 18, 2005 1:55 PM CDT

Hi All --

Alex is doing great and still has a lot of energy. We've been reading a lot of books this weekend. He seems to be stuck on "Green Eggs and Ham"!!

We received a call from Dr. Vilella on Friday afternoon regarding Alex's test results. He also told us which part of the study Alex will be involved in. To begin with, the results of the tests were preliminary. His scans were all clear and so was his bone marrow. One thing that Dr. Vilella told us was that Alex doesn't have a whole lot of bone marrow "mother cells". Those are the cells that produce platelets, white blood cells and red blood cells. He said they were not too alarmed because children with neuroblastoma have a hard time producing platelets, etc. right away. Unfortunately, we are just going to have to wait. Alex also still has some visible scar tissue.

The radomizing process took place and it was decided, by a computer, that Alex would stay on the course/protocol that he is already on. That means no experimental medication and no additional hospitalizations. The only time that Alex will have to be in the hospital from now on, as we understand it, would be when he has his broviac removed, or if he gets a fever. We will still have to go to Clinic at least two times a week for the next few months. Eventually, we will only have to go to Clinic once a week. Scans will take place about every three months.

Our big prayer is that the neuroblastoma will not return.

Alex is bruising a lot this weekend which means his platelets are low. He'll go to Clinic on Tuesday for a transfusion. I'm also guessing he'll need red cells too. Looks like we'll be packing up the trains and the train videos for a long stay at Clinic -- but at least we get to come home.

When I spoke with Dr. Vilella about the study on Friday, he reminded me that Alex is in God's hands. My sister and several of my friends have lovingly reminded me of that this weekend. I'm trying to find rest in that. I never saw myself as a "control freak" until Alex was diagnosed -- then suddenly everything seemed out-of-control. In my head I know that the only one in control is God. Convincing my heart of that is another matter. I'm trying to cling moment by moment to God and his promises and I know eventually, that will get us through this.

Thursday, September 15, 2005 8:00 PM CDT

Sorry for the delay in the updates. What a week...... Alex has had three visits to the hospital this week. Two 5 hour appointments and today, an 8 1/2 hour appointment. I'm so tired of running back and forth to the hospital. I have been relying on friends from church and Craig to take us to and from the hospital because everytime I drive my car, I have a huge anxiety attack. This is something that I need a lot of prayer for. I have had to decide to put my pride aside and ask everyone I know to pray that the Lord would remove the anxiety attacks from my life.

Alex has had to be sedated a couple of times this week. I hate sedation. Alex just seems so vulnerable. He didn't come out of sedation very well today. I had to hold him down practically the whole way home. He screamed the entire time that Craig was driving us home. We think it was a side effect from being under sedation for several hours today.

Alex's white count is VERY low right now. It is only 1.7 today. Normal is 10.5 and above. This always worries me because white cells help fight off infection. His red cells were low, but not low enough for a transfusion. His platelets were a 54 (again, normal 150-450). No transfusion of platelets were given today, but by Tuesday next week, we expect differently.

We find out how we were "randomized" (I think I just made up a word -- actually, Craig did) for the national study that Alex is participating in. We'll also get some preliminary results from the tests conducted this week.
I'll keep you posted as soon as we find out.

Please keep our friends at Rainbow in your prayers. Jordyn's parents are really having a tough time -- so tough that they can't speak to any of us right now. (Which is completely understandable) Brooke just got out of the hospital after a bout with c-dif. Cassie is a teenager who we have grown very fond of. She is in the hospital after a relapse of her tumors and is doing chemo and radiation. She gets out next week and we hope to have her over for dinner. Another boy, Alex (also a teenager) will probably be in the hosptial for months. Please remember the kids who just get dropped off for days at a time with now visits from even their parents. This tears my heart apart.

Not only am I gripped with fear over my own child's health, but my heart bleeds for these other children and their well-being.

Sunday, September 11, 2005 9:08 PM CDT

Here we are late on Sunday night already. Craig is upstairs with Alex. We have done his night routine and he is in bed watching a train video. Adjusting to bedtime is still an issue with him for some reason. The last couple of nights he has had us up every couple of hours screaming and crying. Sometimes he'll say that his stomach hurts and sometimes he just keeps crying and wants us to rock him. Needless to say, we still haven't gotten much sleep.

Even though we had some sleepless nights, we had a good time during the day. Saturday night we had our friends Keri and David and their boys over. Alex didn't know they were coming until the last minute -- in case we had to cancel. He was SO excited. Mak always makes Alex laugh. Thank you Mak!! After dinner we all played UNO out on the patio. It was so much fun. It gave us a sense of what a normal life is like.

Craig and Alex dropped me off at church this morning. It was so nice to be their with everyone. Singing the hymns this morning was comforting. I almost didn't go to church this morning because the thoughts of leaving the house always make me anxious, but I was glad that I went. After church, Alex and Craig came back to pick me up. You would have thought there was a movie star in town. Alex stayed in the car, but everyone stopped by the car and said hello. He was so happy to see everyone. I really am looking forward to the day when we can go to church together as a family again.

We get to stay home tomorrow,however, Alex has several scans scheduled this week. He has a clinic appointment Tuesday, then, he is not allowed to eat all day Wednesday, or Thursday due to being sedated for the scans. His appetite isn't back to normal yet, but we have been encouraging him to eat, and he typically asks for something to eat in the mornings. The scans he has scheduled are to qualify him for the randomized mono-colonal study the doctor would like to see him involved in. I'm hoping the results of these scans will set my mind at ease a little more.

I'm afraid to be too happy about Alex's progress right now. He is doing so well and he looks so good, but I am afraid that if I am too happy about that, it will be shattered by bad news. TRUST, TRUST, TRUST......the only way to learn it is to do it.

Wednesday, September 7, 2005 8:32 PM CDT

Today was the last day of radiation!!! YEAH!! The radiation team certainly made it a special day for Alex. First of all, Colleen, one of the technical people who has seen Alex from day one of his radiation experience was suppose to be on vacation this week. However, the past two days, she has come in to the hospital at 7 a.m. just for Alex's radiation. She said that she wanted to see it through to the end with him. This morning while we were waiting for Alex to be called back to the exam room, Colleen came out and gave Alex a big stuffed Snoopy. She said that Snoopy is her favorite and she thanked Alex for making her smile every day.

Also, every day when Alex went to radiation he would get to pick out a toy from a toy box. Everyday he would pick out a "hot wheels" car. Today when we were called back for his therapy, there was a gift bag on top of the toy box with Alex's name on it. It had a hot wheels race track in it. THEN, they told him still had to pick out a toy from the toy box. After radiation, we went up to the recovery room and they had a present and a cake -- yes, a cake for Alex!!

We have tomorrow off and then Clinic on Friday. Alex's platelets were only 7,000 on Tuesday. Normal range is 150-400 thousand. He'll probably need platelets on Friday. We have another Clinic visit scehduled for Tuesday. We still don't know what time his scans will be next week, but we know it will take three days to have them done.

Ever since Jordyn died, it has been so difficult to go back to the hospital. Craig and I feel physically ill everytime we go back to the hospital now. I was feeling so faint last week that I ended up in the ER for a few hours. We want to be happy that Alex is doing well. We are so very thankful to the Lord for his mercy, but at the same time, we are so worn down and full of sorrow for the other families suffering. Plus, we know Alex won't be in the clear for 3 years. We are also trying to adjust to being at home and functioning somewhat normally again. I think it is going to take quite some time. I wish we could take a couple of months off and do nothing but recoupe. I know that the families who are going through the same journey that we are feel the same way. We are all weary, and yet trying to trust God in the midst of it all.

I hope Alex sleeps in a little bit tomorrow. I have a lot to do around the house. Because of all the appointments the last two days, the house has gotten away from me again.

Monday, September 5, 2005 8:17 AM CDT

Hi All --

It's been a pretty nice weekend, and somewhat restful. Craig and I have been trying to catch up on some things around the house and run some errands. I went to the grocery store for the first time in months. It was a very strange feeling. Almost overwhelming. I should back up and say that on Friday night our friends Dean, Grace and Katherine came over and played with Alex while Craig and I went out for a bite to eat and a trip to Wal-mart. Alex had such a good time. Thanks to Grace for her generous offer to stay with Alex. Craig and I were hesitant to leave Alex because he has surges of pain from the radiation, but I think the Goods were a wonderful distraction for him. Dean is the pastor of our church. They are always willing to go above and beyond in serving our church. We are so very thankful for them.

Last night we went to a drive-in movie with our friends the Ellis'. It was nice being out and yet being able to keep Alex from exposure to germs that could make him sick.

Alex has been having stomach pain periodically from the radiation. I also think the pain could be associated with the fact that his digestive system is starting to work due to the fact that he is eating a little bit. The pain causes him a lot of discomfort and then he starts throwing things and hitting at Craig and me. It is so hard to tollerate sometimes. We have been going through this particular reaction to pain for almost 10 months. On one hand you are hurting because you know that your child is in so much pain that he is acting out. On the other hand, you get tired of being a punching bag. So many ups and downs.........When the pain passes, Alex will often climb in our laps and hug us and kiss us. He knows that his reaction hurts us and he wants us to know he loves us.

When Alex isn't having surges of pain, he is energenic and he really does look good.

Friday we received a call from the doctor's office. All of Alex's scans that he was due to have after T+100 have been moved up about 30 days because of the study he is going to participate in. That means that instead of having a week or so in between appointments, we will continue on our early morning schedule for a couple more weeks -- give or take a few days. It feels like his treatment is never going to end.

I've been in contact with a few other parents in the same situation and they say they feel the same way.

What we need more than anything right now is God's grace, peace, mercy and strength.

Tuesday, August 30, 2005 7:35 PM CDT

If I had to describe this day, I would say more emotional ups and downs. Today after radiation, Craig and I took Alex to clinic. Alex has a fungal infection on his tongue. The doctor referred to it as "furry tongue". GROSS!!! I didn't understand how he got the infection because he takes anti-fungal medication every day. However, the doctor said that because Alex's immune system is so weak and he has been taking antibiotics, the medication is killing both good and bad things.

While we were at Clinic, Craig and I talked with Alex's doctors about a clinical trial that his oncologist would like him to participate in. Of course, we were told that there are no guarantees that the cancer will not return, but this treatment could help prolong his life by killing microscopic neuroblastoma cells. I hate even listening to the details of the study. I want to help Alex as much as possible, but my emotions are just so raw right now. Craig and I are just trying to find the strength to get up in the mornings. We have both shed many tears this past week.

Everyone keeps asking us how it is to be home. It's good to sleep in our own bed, but at the same time, we are still on the move so much we don't have time to enjoy being home. I haven't even unpacked everything from our 64 day stay at the hospital.

After Clinic, several of the bone marrow transplant families who were close to Jordyn were invited to a support group meeting organized by RB 2 staff members. It was very helpful. There were a lot of tears shed and even a little laughter. Jordyn was such a special child, and her parents are such special people. The music therapists ended the meeting by singing a song by Sarah McLachlan called "I Will Remember You"....... The music therapist changed the last verse of the song in memory of Jordyn and her family. I'll leave you with the words to the song.

Chorus:
I will remember you
Will you remember me?
Don't let your life pass you by
Weep not for the memories

Verse 1:
I'm so tired
I can't sleep
Standing on the edge of something much too deep
It's funny how we feel so much
But we cannot say a word
We are screaming inside, oh, we can't be heard

Changed Verse 2:
Ga,ga, Toni and Lisa
What an incredible family
They made life more bareable
The way they cared for us
Cowboy boots, bikini, guitar
The sparkle in her eyes
She gave them everything she had
And Jordie we miss you.....
CHORUS

Monday, August 29, 2005 6:23 PM CDT

Sorry I haven't been in touch the past couple of days. We are still adjusting to being at home and going back and forth to radiation. My father-in-law took us to radiation Wednesday, Thursday and Friday of last week. (Thanks Bill) Every morning he would tell Alex that he was his driver for the day. This morning when Alex woke up to go to radiation, Craig told him that he was going to drive us to radiation and Alex started to cry and say "I want Grandad to be my driver!" Libby (my mother-in-law)and I went shopping over the weekend. Craig said that after 64 days in the hospital I had some making up to do in the shopping department. We went to TJ Maxx where I found a few bargains.

Today was a really long day for us. We were at radiation at 7 a.m., recovery by 8 a.m., and to Clinic at 8:30 a.m. We finished up at clinic at 4:45 p.m. Alex needed both blood and platelets today. Alex played with his trains and took a nap during the whole process. Craig picked us up by 5:30 p.m. and we got home around 6:30 p.m. We'll start the process all over again tomorrow. Hopefully we will finish up our Clinic appointment by noon. It's time to put Alex in the tub and change his broviac dressing.

Friday, August 26, 2005 8:34 AM CDT

What a chaotic week......so many emotional ups and downs.

Alex has finished his first five days of radiation -- only seven more to go. The Lord has been merciful to Alex. A lot of children who get cancer end up doing full body radiation for 30 or more days. Alex only has 12 sessions and it is specifically localized. Actually, years ago, neuroblastoma paitents had to do full body radiation. Thank God for advances in medical technology. Alex has had minimal side effects so far. He is even eating some. We are all glad to be home. The girls from church came over before we came home and cleaned our house mowed the lawn, planted flowers and filled the fridge with groceries. Thank you girls........what would I do without my friends? God has truly blessed me.

Craig and I are emotionally, physically and spiritually exhausted right now. We went to Jordyn's viewing last night. It was so difficult. I believe in God with all my heart and I know that God is soveriegn. There are a lot of things that I know and believe about God, but my heart is heavy and filled with questions. Our emotions range anywhere from exhaustion and depression, and for me a frustrating anger at times. I'm full of questions stemming from heartache and pain. There are definately days when I think this is just all too much.

Alex is doing well, but we have friends who are not.

I haven't had time to sit and read my devotional or pray this week because my days have been starting at 4:30 a.m. and not ending until around 11:00 p.m. Craig's father has been taking us back and forth to radiation this week. My mother-in-law has been helping around the house. I'm glad they were here this week -- it's been both a help and a comfort.

We get two days off to rest, and boy do we need it. It's good to see Alex have so much energy. Alex needs me, so I'll have to go now.

Tuesday, August 23, 2005 3:43 AM CDT

Today will be very bitter/sweet for us because Alex's friend Jordyn has gone to be with our Lord. Jordyn has fought her disease since she was 18 months old. She's five. I woke up at 3:30 a.m. and went to find Kathryn (Sara Mae's mom) We had made a deal that if one of us could not sleep, we would wake the other and go check on Lisa. We had gone over to the PICU several times yesterday because Jordyn was put on full life support. Kathryn and I got to hold her hand and tell her that we loved her.

When Kathryn and I walked over to check on Tony and Lisa, they told us that they couldn't put her through anymore and that even with the medications, Jordyn's blood pressure wouldn't go up. We stood for a good while with them and Lisa gave Kathryn and I Jordyn's favorite squishy pillows for Alex and Sara Mae. Oh how I dread telling Alex that Jordyn isn't coming back to Rainbow 2. He kept going by her door yesterday and saying that "Jordy is at 'the test' (what he calls the PICU because he has had a lot of tests done their) with Annie" (a nurse he befriended in the PICU).

All I keep thinking is that Jordyn is their only child and Alex is ours. Their house probably looks like our house -- a shrine dedicated to the child we love so very much.

We are going home today after radiation. I want to celebrate that with Alex, yet I wonder how. I pray that God gives me the strength.

I don't care if I have to say this a million times and people are tired of hearing me say this. Treasure your children, they are gifts from God entrusted to you. It's too easy to get caught up in the busyness of life and forget that. I know we all get tired -- life is exhausting, but spend quality time with your kids. It doesn't matter if they are enrolled in every activity under the sun. Working long hours because we think if we earn more we can give them more doesn't matter. What makes our children happy is the time we spend with them, telling them that we love them, letting them know that they are important to us.

We are going home today with our precious boy in his car seat, and Jordyn's parents are riding home with an empty car seat. Only God knows why.

Sunday, August 21, 2005 10:12 PM CDT

It's been an up and down weekend for us. Jordyn was put on a respirator in the PICU today. My friend Kathryn and I went over to see her tonight. It was so sad. My chest was hurting with sorrow as I looked at her. Her parents are having a very difficult time right now. Jordyn looks so helpless. The doctors put her on the respirator because she was working over-time to breathe do to a high heart rate and low blood pressure. Her symptoms are a result of Graft Vs. Host Disease (GVHD). We are hoping after she has four doses of the medication she needs, she'll improve -- she has received two doses so far. Please pray for them.

Alex has had a wonderful weekend. He is eating little by little and drinking a little more than is required of him, so that is good. He has a ton of energy. Alex starts radiation tomorrow morning. We've already gone through the three simulations. I'm praying Alex doesn't have too many side effects -- like loss of appetite and nausea. If all goes well, we will be leaving the hospital on Tuesday after radiation. Craig's parents are coming up to help us move out of the hospital and go back and forth to radiation this week.

Please pray for wisdom for Craig and I. We have to make a decision as to whether or not to allow Alex to be involved in a study that he is eligible to take part in. This would involve more hospital stays and clinic visits and experimental medication; but it could also keep the neuroblastoma from returning and help other patients in the future. Craig said he will update the website and explain in detail what this study would involve.

Another girl that we have come to know here is 18 now and refusing chemo after a relapse of her tumors. She is going to do radiation to shrink the tumors and releve some of her pain. Her mom is having a hard time too. So much sorrow.

I need to go to bed now as transport will be here at 6:45 a.m. to take us to radiation. I'll update you again tomorrow. TTFN

Thursday, August 18, 2005 9:19 PM CDT

Jordyn is still in the PICU. However, the docs think they have determined that she has Graft Vs. Host Disease (GVHD) which is treatable. She's still pretty sick, but hopefully in the next couple of days she will start to perk up and be back here with us on Rainbow 2.

As for Alex, he is as tired of the hospital as we are. Today on the way back from the recovery room he was fighting with us about wearing his mask. We got him to wear it, but then when we got back to the room, he banged his head on a tray and started yelling I don't want to go to the "clinic in the basement". By the "clinic in the basement" he means radiation. He said he wanted to go back to the clinic upstairs. (The Ireland Cancer Center) To put it mildly, this morning was rough.

Right now, the nurse and Craig are holding him down to take his meds. Normally meds are not a problem, but Alex didn't go to bed last night until midnight. THEN, we woke him up at 6:30 a.m. to go to radiation, AND he didn't take a nap ALL DAY!!! I don't know where he gets the energy!!

Tomorrow morning is our last simulation for radiation and then Monday is the start of the real deal.

I'll keep you updated on Jordyn's progress as I hear more.

Tuesday, August 16, 2005 9:54 PM CDT

First things first, please pray for Jordyn -- Alex's little friend who wears the bikini's. She is on her way to the PICU right now. She has been doing nothing but sleeping for several days now. She has also been spiking fevers and they can't find the source of her problem. She is SO sick. Her heart rate is really high and her blood pressure is really low. Jordyn has leukemia -- she relapsed several months ago and also had a BMT but from an unrelated donor. My heart aches for her parents. Jordyn is their only child. She is five and she has been fighting this battle since she was 18 months old. So much heartache.

Well, rumor has it that we are coming home from the hospital next Tuesday after our second radiation treatment. Yes, we will be returning at 7 a.m. the next morning for radiation, but we will be able to sleep in our own beds the night before. Believe it or not, I do think it is going to be a little bit of an adjustment for us once we are at home. Figuring out a routine again, etc., but I don't want to get ahead of myself......one day at a time.

One of the nurses brought her video camera in to video tape Alex dancing. We had several nurses in our room tonight just to see Alex dance and make faces.

The new picture above was taken minutes after we returned from the PICU. Alex had put a donut seat cushion on his head and told us to look at him. I don't want to seem irreverent, but I can't help but think that God smiles at Alex's sense of humor -- especially because God brought him out of such a serious situation in such a short amount of time.

Even though Alex is doing well, he is having his grumpy moments like we are. I think he is going to be THRILLED to be home. I pray that we are in the home stretch. Please pray for continued strength for us. Even after we go home, for two weeks after, we are going to be getting up around 4:30 a.m. in order to be in radiation by 7 a.m. Some days after radiation we will be going to Clinic to check Alex's blood counts in case he needs a transfusion. Also pray that infection and fevers won't be an issue.

Thank you for your faithfulness in praying for our family.

Tuesday, August 16, 2005 8:06 AM CDT

Good morning everyone. Here we are at what I think is day 55 of our hospital stay. Alex is in good spirits and entertaining the nurses with funny faces and things that he says. Everytime he goes out in the hallway with his pedal car, the nurses get him to say or do something funny like dance for them. Yesterday his transplant team told us they want him to wear a bike helmet -- even in the hospital -- when he rides the pedal car because he goes so fast they are afraid he is going to crash. They may seem odd to most people, but Alex's platelets are still very low. As you can see, nothing much keeps this boy down.

Another thing to be thankful for.......no more NG tube!!! YEAH!!! We can actually see his whole face! The nurse came in yesterday and told us we could start working on the tape around the tube on his face and that she would be right back to remove the tube. Well, as Alex and I were pulling off the tape, the tube started to slide out his nose, so we just pulled it out of his nose ourselves! (hope that doesn't gross you out too much)

I wish my attitude and my spirits were that of my son's. It was so hard to get out of bed this morning. I read in "Streams in the Dessert" Psalm 40:1 "I waited patiently for the Lord". "Waiting is more difficult than walking, for waiting requires patience, and patience is a rare virtue." (I'm not feeling virtuous right now -- ha ha) The reading goes onto say that sometimes in our waiting, God is protecting us. We saw that last weekend. Alex was doing fine, we could have gone home. In just a few hours, he was deathly ill and we were only steps away from the PICU. At the end of the reading it says "It requires much more courage to stand and wait and still not lose heart or lose hope, to submit to the will of God, to give up opportunities for work and leave honors to others, and to be quiet, confident, and rejoicing while the busy multitude goes happily along their way." It goes on....."The greatest life is:'after you have done everything, to stand' (Eph.6:13) J.R. Miller"

It's hard waiting, and everybody and everything seems to just keep going on around us. But I have to remember that God is faithful. Alex is doing really well. I was full of pride and joy over him before he got sick, now I am overflowing.

I'll leave you with this as a reminder to myself. (I'm telling you, I feel grumpy and tired today) "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; yes, wait for the Lord." Psalm 27:13&14. (Thanks Vernon and Faye)

Sunday, August 14, 2005 8:37 PM CDT

We have had a very good weekend! Alex is still on TPN, (IV nutrition and lipids)but he is not using the NG tube at all. Hopefully we will be allowed to remove it tomorrow. Alex asked for and ate spaghetti on Saturday night. Today, he ate several bites of a cheese "pizza-dia" -- not to mention a couple of bites of candy. We've had to work to get him to drink 400cc of something other than ice water everyday. In the past, this was never a problem. 400cc is about 2 1/2 juice boxes. Now for all you moms out there, you know that is hardly a problem we have with our kids on a regular basis. Neuroblastoma patients just don't like to start eating or drinking right away. Craig and I have become sneaky about how we get his fluids into him. Sometimes we give him a popcicle which is about 90cc. The best way to get fluids into him is to tell him to choose a beverage, then let him loose in his pedal car. He makes laps around the nurses station and every now and then we stop him and tell him to re-fuel. Before long, he is meeting is quota for the day. I must admit, it is tiring trying to make sure he is eating and drinking all of the time.

As I am typing this, I realize what a difference a week makes. Last week he was close to death. Some of the nurses have told us that they could not figure out how Alex was talking to us, or even sitting up last week during the whole ordeal. God has given our little guy a lot of strength.

Please pray that when Alex is off the antibiotics on August 23 that his body will respond. Also, pray for the children who are up here with us. Some are just dropped off during their treatments, and some are fighting relapses of their diseases. It is difficult to watch these children suffer too. I really can't go into too much detail, but it is heartbreaking.

Wednesday, August 10, 2005 8:56 PM CDT

I say this half exhausted and half relieved. We were told today that we are not going home until at least August 23. Yikes......this is due to the fact that Alex is taking the "atomic bomb" through IV's for 14 days.

Again, your prayers matter. The doctors were absolutely amazed at Alex today. Why? Not just because he is out of the PICU so quickly, but because he was riding the pedal car around RBC 2 all day. The doctors keep shaking their heads in disbeleif that he is alive and kicking.

My reading in "Streams in the Desert" was so fitting for our current situation. I really need to share it with you.
"Yet when he heard that Lazarus was sick, he stayed where he was two more days." (John 11:6)
"This miraculous story begins with the following declaration: 'Jesus loved Martha and her sister and Lazarus'(v.5). It is as if God were teaching us that at the very heart and foundation of all His dealings with us, no matter how dark and mysterious they may be, we must dare to believe in and affirm His infinite, unmerited, and unchanging love. Yet love permits pain to occur.
Mary and Martha never doubted that Jesus would quickly avert every obstacle to keep their brother from death, 'yet when he heard that Lazarus was sick, he stayed where he was two more days.'
What a startling word: 'yet'! Jesus refrained from going not because He did not love them but because He did love them. It was His love alone that kept Him from hurrying at once to their beloved yet grief-stricken home. Anything less than infinite love would have rushed instantly to the relief of those beloved and troubled hearts, in an effort to end their grief, to have the blessing of wiping and stopping the flow of their tears, and to cause their sorrow and pain to flee. Only the power of divine love could have held back the spontaneity of the Savior's tenderheartedness until the angel of pain had finished his work.
Who can estimate the great debt we owe to suffering and pain? If not for them, we would have little capacity for many of the great virtues of the Christian life. Where would our faith be if not for the trials that test it; or patience, without anything to endure or experience and without tribulations to develop it?"

Craig pointed out to me that we were out of the PICU in two days. Just like Jesus raised Lazurus from the dead two days later. God had not left us during Alex's ordeal in the PICU, although at times I wondered. The reading for today was no coincidence.

Tuesday, August 9, 2005 5:50 PM CDT

We are back in our room on Rainbow 2. What a crazy couple of days in the PICU. It was very scary and very difficult for all three of us, but especially Alex. Alex's blood pressure went from being really low to really high. The high blood pressure gave him a headache and caused him to throw up. He ended up being put on what his doctor refers to as "the atomic bomb" of all antibiotics for the infection he has.

The condition that Alex has, killed a little 8 year old last month because he wasn't here when it hit him. He was at home. The same little boy also had other problems, but ultimately the infection and being "septic" killed him.

In order to monitor Alex's blood pressure he had an "art-line" put in his artery below his thumb. It was about three inches long. The first couple of times they put it in, they didn't numb the site and they were not able to sedate him either. It was truly awful watching him suffer, but it was necessary. When they did "sedate" him, his eyes stayed opened and he shook terribly and we could see his heart beating on the sides of his neck. His breathing was also very shallow.

Over the last few days, I must admit I had been questioning God. I also got angry at times. We have been here 49 days. We are exhausted. Then, I was reminded by several good friends that God had not allowed us to be at home when this infection hit. Another thing happened..........The nurse from the PICU who escorted us back to our room here at RBC 2 said something interesting to me. I should back up by saying that before she brought us back to our room I was remarking on how large Alex's chart is. It is actually three 3-ring binders that are about 4 inches thick. I said that Alex doesn't have a chart, he has a library. SO, when the nurse brought us back to our room, she said that she had been reading Alex's chart and that it was so sad in the beginning, but that he has had "miraculous" recoveries from so many procedures, i.e., bone marrow harvesting and surgery. I must say that God really rebuked me in that moment. I'm telling you, Sunday night, I was hurting so badly that it made me angry. So many things were going through my head. Things like "where is God right now?" "Why is letting my child suffer like this?" And of course, my still unanswered question......."why does God allow people to have children that don't appreciate them?" I will never in all my life understand people that abuse children, or are so miserable with themselves that they treat their children like they are a pain. I would do just about anything right now to have a healthy child at home with me.

Alex has so many restrictions on him right now. We won't even be able to take him to church until at least Spring. Craig and I have taken Alex to church since the day he was born. Some people don't take their kids to church at all, or even try to teach them about God.

God has shown me that we live in an imperfect world and some questions will never get answered. What I do know is that Alex was given to us and that we need to take care of him the way God expects us to. I need to be thankful that God placed us in Cleveland to get the best help Alex could possibly get. I also need to continue to cherish even the bad times that Alex goes through because at least he is here with us. I guess thankfulness is what it is really about.

A friend of mine reminded me yesterday when I was so discouraged that God would provide the grace I needed for the day minute by minute and not think too far into the future. Even though it was difficult, God provided many things for us.......just not sleep....(tee hee)

Monday, August 8, 2005 6:24 PM CDT

Alex is still in the PICU. I talked to Barb this morning around 9:00. The infection is in Alex�s blood stream. They are pretty sure it originated in his intestines. She said his intestines are still �raw� from chemo. With that being the case any small amount of bacteria can enter his system because his defenses are in such a weakened state. Alex has endured a lot of pain over the last two days and this has been very difficult for Craig and Barb as well. They have seen him suffer much.

The doctor has told them they are bringing the infection under control. Barb said when she (the doctor) came by this morning she even got a little teary eyed at seeing Alex. She also told Craig and Barb if they had been at home when this happened it could have been a disaster. When these type of infections and fever occur they come on very rapidly. Praise be to God, they were still in the hospital. His timing is perfect. They were able to get Alex treated quickly.

Keep them in your prayers, they are exhausted.

Sunday, August 7, 2005 8:32 PM CDT

Hey Folks,
Barb asked me (Lisa) to fill you all in on what�s been going on with Alex today. I spoke with her around 9:00 this morning and she said Alex had a fever of 101. They were scheduled to go home tomorrow.

I just talked with Craig a few minutes ago and he said Alex�s fever peaked at 103. They have him on five different types of antibiotics. Around 4:00 this afternoon his blood pressure had dropped below the level where doctors were comfortable. Apparently when you have a fever blood vessels become dilated and blood pressure drops. Craig said Alex had been given a lot of fluids to help compensate for the extra room (space) in the blood vessels, but the doctor decided Alex needed to be moved to the PICU because he needs additional meds that can only be administered there in the PICU.

Also, another immediate concern is the need to get a catheter into one of Alex�s arms. Craig said they had tried five or six times and could not get it in either arm. He said he literally had to lie down on Alex so they could continue to try to get it in. Finally, because Alex was so upset they abandoned trying to get it in for the time being. But will try again later. Pray that the next attempt would be successful so Alex won�t have to endure any more of those painful sticks (on top of being sick with the fever).

The doctor did tell them they were hoping the fever would come down by mid-day tomorrow. Keep them in your prayers they have a ways to go. This also means an extension of their time in the hospital. They were looking so forward to going home.

Craig said if you have an immediate need to reach them while they are in the PICU, you may call Barb�s cell phone and leave a message. 440-263-7930

Friday, August 5, 2005 1:17 PM CDT

We really are going home on Monday!!! YEAH!!!!

Sorry I haven't updated until this late hour, but we've been busy chasing Alex around because he has been unhooked from his IV pole. He is even starting to eat a little bit.

Yesterday was very busy. We had our radiation consult. Alex is going to have 12 treatments of radiation. On Monday, before we go home, Alex will be put under general anesthesia in order to make a body mold of him from head-to-toe. During radiation, after he is asleep, they will place him in a body mold/cast to keep him perfectly still during radiation. We go to clinic on Thursday to check his counts. We will have three preliminary radiation appointments before radiation actually begins and during these appointments/tests, Alex will have to be put under general anesthesia. That is a total of 15 times of anesthesia including radiation. His actual time of radiation should only be about 15 minutes, but the whole process takes about two and a half hours. It is crazy!

You probably won't hear from me again until after we get home. Alex needs me right now, so I have to go. TTFN

Wednesday, August 3, 2005 5:22 PM CDT

More good news......Alex's upper G.I. test was normal. It is still a mystery as to why he is throwing up bile and not the feeds. Also, we are going home on Monday! Alex still needs to be on I.V. feeds and the NG tube. The Family Learning Center Rep will come up to our room and teach me how to use the I.V. pump at home. I already know how use the NG pump and I've put the NG tube back into Alex's nose/stomach three times before. It will be good to be home, but it will also be a lot of work for me to maintain 5-8 medications, the feeding pump and now IV feeds. We will also be running back and forth to clinic two times a week. I've been asked if we are going to have a nurse come in. I say no. It is so hard on Alex. Alex needs his home to be a "safe place" for him. Yes, it means more work for Craig and I, but Alex really needs a place where there are no doctors or nurses.

Alex starts radiation around August 16th. Our goal is to have him finished with radiation by Labor Day. When the doctor told me that, I was almost puzzled. I was thinking, "but Labor Day isn't until September". Then I remembered, it is August!!! The whole Summer has slipped on by! My head is spinning. Our radiation appointments will be at 7 a.m. every day for 12 days, not including weekends. That means we will leave our house by 5:45 a.m. every morning. On Tuesdays and Fridays after radiation, we will go to clinic for blood and platelets.

I don't know if I have mentioned this before, but there has been an answer to prayer regarding Alex wearing his medical mask when we have to go off the floor for tests. He has worn his mask twice this week. He is so funny. He wears a mask and stands on the IV pole and I push him to where we need to go in the hospital.........what a kid.

Tuesday, August 2, 2005 5:26 PM CDT

Good news! Alex's CT scan was clear. There is nothing left of the tumor. We are at a really good place for radiation.

After we returned from the CT scan and the nurse started up the feeds, Alex started throwing up again. The doctor had just walked in to give us the results of the CT scan when Alex got sick. Alex is scheduled for the Upper G.I. scan tomorrow at some point.

Alex's platelet levels and his lack of eating are really slowing down our return home. I'm sure one of these days the docs will come in and tell us we can go home and it will be a pleasant surprise.

Monday, August 1, 2005 8:03 PM CDT

Today was not an uneventful day. Alex and I went to the end of the hall to sit on the big window seat and play. We put together two Thomas puzzles, read a Thomas book and started to color a picture with Thomas and a tractor named Terrance. That prompted Alex to ask me to get his Terrance tractor for him. I asked if he wanted to walk down three doors to the room and get it with me. He said no he would wait for me. I no sooner got to the door and I heard him screaming and crying. He was stretching to get down off the bench, slipped and bumped the back of his head on the marble -- yes, marble -- window ledge. Two nurses and the transplant doctor were right there when it happen. Everyone sprung into action. He had a HUGE bump on his head with a gash that was bleeding!! Now, if he was a normal 3 year old, we would just have put ice on it....but NO, he is not a normal 3 year old. They immediately rushed us back to our room where I held ice on his head while the doctors ordered platelets. One nurse pre-medicated him and the other didn't even wait for the platelets to be delivered, she went down personally and picked them up. We had to watch him very closely to make sure he didn't have a concussion . Thank God he didn't have a concussion.

Alex is having a CT scan tomorrow at 1 p.m. in preparation for our radiation consult on Thursday. He also has to have an Upper G.I. test done this week. This test will hopefully tell us why he is throwing up bile and not his feeds.

Life is not boring here in Cleveland. As I am typing this update, Alex is in the tub playing basketball. He is amazing. Nothing holds him back. That should give me hope.

Sunday, July 31, 2005 9:09 PM CDT

We have been in the hospital for 40 days now. Alex is struggling SO MUCH with feeds. He has vomitted at least every 2 hours today. One time he threw up the NG tube, which meant he had to go through the process of it being put back in -- through his nose and down his throat. The doctors have told us that his throat and stomach are still "shredded" from the 96 hours of chemo. It takes a really long time for everything to heal.

I must admit that days like these are discouraging. We also found out that while we have been in the hospital, another one of the children that we knew through our stays here has passed away. That is two deaths since June. We have also been seeing new diagnosis and some relapses while being here. These situations add to the discouragment of your own situation. There are days when we feel like our hearts are being ripped out.

Knowing that the healing process is a long one is good and bad. It is good in that you know ahead of time that this process takes time and you need to plan accordingly. It is bad in that you feel like your missing out on life going on outside of your situation and sometimes it feels like it is never going to end.

We have Alex's radiation consult on Thursday. I'm not quite sure what that will involve, but I'll keep you posted.

Wednesday, July 27, 2005 6:56 PM CDT

Alex is unhooked from his IV pole for a little while. He was running down the hallway with his new found freedom. After he finished his jog, we put him in the bath tub. That is where he is right now.

Because Alex lost 2 pounds, the doctor kept him on the IV nutrition for one more day. The transplant team also increased his feeds through the NG tube -- they also increased the rate that it runs through the tube and into his stomach. This change caused him to throw up several times today. After he took a nap this afternoon he felt better and he even tolerated his first evening feed.

Well, I need to go change Alex's broviac dressing so that the nurse can hook him back up to the IV. He is also getting platelets tonight. TTFN

Tuesday, July 26, 2005 1:22 PM CDT

Well, the good news is no platelets today, and they are taking away the IV lipids. The "bad" news is we are going to be here for at least another two weeks. Alex's feeds threw the NG tube are still pretty rough. He is still getting bolus feeds to stretch his stomach. Alex has vomitted during every feed today.

I think we are all at the point where we are tired of the hospital. We are at T+27. We have been in the hospital for 34 days straight. Today has been kind of a mellow day. Alex woke up sick. After he recovered, he got dressed and we went for a walk in the hallway and he rode the couze coupe around the floor. Alex is so strong. Even though he has gone through so much, he just keeps going. I know I speak for Craig when I say he is our little hero.

I feel sad and depressed today. It was really hard to see Peggy leave. She's a good friend and she makes me laugh. Alex had a good time playing with her too.

After reading my devotional in "Streams in the Desert", I know I have to keep waiting with hope. God knows exactly what we need to hear and when. There was a prayer in the reading that was perfect for how I feel today. Allow me to share it with you......"Father, give me Your divine power -- the power of Gethsemane. Give me the strength to wait for hope -- to look through the window when there are no stars. Even when my joy is gone, give me the strength to stand victoriously in the darkest night and say, "To my heavenly Father, the sun still shines."

"I will have reached the point of greatest strength once I have learned to wait for hope." George Matheson

Monday, July 25, 2005 1:50 PM CDT

Sorry I haven't updated the website in a few days. My friend Peggy from Alexandria, VA has been here since last Thursday. (Hi Emma and Mark!!) Peggy has been a real blessing to us this week. She has played trains everyday!! Everyday she has come, she has brought a little something for Alex. Needless to say, Alex looks forward to her visits. She did squeeze some time in for me on Saturday! We went out to brunch and shopping. It was so nice. I must admit that being out was an adjustment for me. By the time we returned to the hospital, my head was spinning and I had a headache.

Alex is doing pretty well. We are trying to get his feeds adjusted because he is still vomitting. Starting tonight he will not receive a feed in the middle of the night. Hopefully this will stop him from waking up out of a dead sleep so sick. He is very energenic at times. He was riding a cozy coupe car around the floor at 9 a.m. this morning.

Obviously, we are not going to be going home this week, but that is no shock to me. We have a radiation consult next week. I suspect that we may go home late next week, or early the next. I'll keep you posted.

Thursday, July 21, 2005 9:55 PM CDT

Alex has had a good day today. He didn't even take a nap. He is watching a scenic railroad special on PBS right now. The child never gets tired of trains.

It does my heart good to see him so happy right now. He is feeling good and the doctors all say that he looks good too. He still vomits every now and then, but for the most part, he is playing.

As I type this, I realize how many blessings the Lord has granted to us throughout the transplant process. Alex hasn't had to go to the PICU during this process, and we have the best care here at Rainbow Babies. The medical technology is also highly rated.

It's easy to forget the blessings when you are sleep deprived and living out of a hospital room. It's even easier to forget the blessings when we have had to watch Alex be so sick.

Sitting and waiting is difficult at times. Again, in the devotional I read in the morning (Streams in the Dessert) has been talking about how it is only through our struggles that our faith is strengthened. Only when we struggle and suffer can we sympathize with others in their suffering and struggles. I had posted some verses in our room to encourage us periodically. One of them is Romans and it talks about how we rejoice in our tribulation knowing that tribulations brings about perseverance; and perseverance, character; and character, hope; and hope doesn't disappoint, because the love of God has been poured out in our hearts through the Holy Spirit who was given to us.

I was talking to one of my friends about this verse and we were talking about the fact that "rejoicing in our tribulation" doesn't mean being happy about suffering. It's more about peace -- peace about God being in control.

Like I have said many times before, when I write these updates, sometimes, I'm talking to myself. Thanks for listening.

Thursday, July 21, 2005 9:49 AM CDT

Some good news to report!! Alex does not need platelets today. His level is only 79, but yesterday it was only 30. He did have a transfusion yesterday. The doctor wants to hold off transfusing him tonight to see if his body "hangs on" to the platelets and maybe even starts producing some on its own. His red cells are good too. Another thing to report........they have turned his feeds off and are going to give him a bolus of 75cc's every three hours. (sort of like a meal would be) He still isn't eating, but we are working on it.

I'm still trying to get a hold of Craig to tell him the good news.

We were up a couple of times last night because of Alex vomitting. I always feel so bad when it wakes him up out of a dead sleep.

I'll have to share some things more with you later. Right now, I'm being asked to play trains!!

Wednesday, July 20, 2005 12:15 AM CDT

Hey Everyone -- Sorry for not updating you sooner, but I ended up getting a virus and was asked to leave the hospital for a couple of days. I never leave the hospital, so I must have come in contact with someone here who had it. After becoming ill, we found out that some hospital staff had the same illness. So now that my head is out of the toilet, (I know that Craig will love that I used that term) I'll tell you what is happening with Alex.

Alex was throwing up until about 2 p.m. on Monday. Craig called me at home and told me that he was doing much better. Thank God Craig could be here with Alex when I couldn't be. It was so difficult to be away from both of them and the house was too quiet. Yesterday was a good day for Alex. He played trains and hung out with his Dad. I came back to the hospital this morning around 8 a.m. I walked in the door and kissed Craig on the head and Alex woke up, gave me a big smile, grabbed my face and gave me a kiss! It's so nice to be missed......

We've had a busy morning. First, Alex did art therapy with Barb and then music therapy in the playroom with Courtney. As I am typing this, he is playing with Buddy.

Alex's platelets still are not coming up on their own, so he will receive another infusion tonight. I doubt we'll end up going home next week, but you never know. His white count was also a little lower than it has been. It was at a 2.5, but now it is at a 1.7. I'm told not to worry, so I won't. Like everything else, our departure is in the Lord's timing.

Sunday, July 17, 2005 6:30 PM CDT

Alex is doing better and, as of today, he has a white blood cell count of 2.0. We're shooting for around fourteen, so we have a ways to go, but we are making progress!! He is probably producing more white cells than what are actually counted, but those cells are fighting the bacteria in his body that could cause infection. He is now off of all antibiotics. He is still receiving platelets everyday.

He's been vomiting a lot today -- it is now every hour. We just spoke to the Chief Resident and he is going to call Alex's transplant doctor to find out what we can do to make him more comfortable.

Vicki, Alex's transplant PNP says that when he gets to the point of needing only 2 platelet transfusions a week, we will be able to go home. That may be as soon as a week from Tuesday. I'm not banking on it only because with transplant things can change in an instant.

Over all, Alex is doing well for all he has been put through. He's been giving us lots of hugs and kisses and playing with his trains.

Thursday, July 14, 2005 7:32 AM CDT

Good Morning.....We were up several times last night due to IV pole malfunctions. Alex woke up a couple of times and needed us too.

Some good news!!! They have taken 9 of our 11 IV tubes away. They left the huge pumps up, just in case Alex needs to go back on one of the meds they had taken him off of, but so far, so good. He's a little puffy and needs to get rid of some of the water retention. (don't we all..tee hee)

Dr. Weirsma seems to think we could be going home in the next couple of weeks. She said that as hard as things have been sometimes that this is the way transplant is suppose to go. Alex was playing ball with Dr. W. in the hallway yesterday. We also went to music therapy where Alex picked out the lollipop drums for us to play. He smiled so much yesterday. If/when we go home, we will still have to come back to clinic three times a week for platelets. I am not looking forward to that schedule......Also, once radiation starts, it will be a 12 day course, not including weekends. We will have to be at the hospital by 7 a.m. That means we will have to leave the house no later than 6 a.m. Yippy......

My faith is truly being tested at times. My trusting that God will bring us through this sometimes waivers because of the risks of the cancer returning. So, even though the doctor's are talking positively right now, I am scared to believe them. Faith is hope in the unseen -- need I say more?

Thank you all for your prayers.......that is what sustains us during this trial by fire.

Tuesday, July 12, 2005 9:31 PM CDT

Today was a much better day. Alex got up at 10 a.m. and immediately started playing trains. Buddy, the RBC mascot came and played trains with Alex for a while. We worked on puzzles again and even watched a couple of train videos. It's now 10:30 p.m. and Alex is still going strong because he slept for a couple of hours due to a dose of Benedryl earlier this evening.

He was giving me kisses all day today. I treasure days like these. I truly see the Lord's grace when Alex is feeling good and happy.

I just have to say this and get it out.......I can't wait to go back to my house and cook dinner every night and do laundry in my own full-sized washing machine. I loved being a stay-at-home mom before all of this happened, but I know I will love it even more when this whole ordeal is behind us. I want to give Alex a bath in his own bath tub and put him to bed in his own bed.

Well, the IV pole is beeping and Alex needs me. TTFN

Monday, July 11, 2005 8:50 PM CDT

Today started out to be a good day, in fact, it was miraculous. Alex took several walks today.....pulling a Thomas the Tank Engine that my friend Jennifer gave him. He was also playing trains, watching trains and put together a train puzzle. This afternoon we even went to art therapy where he made a train out of clay.

Then, around 4:00 p.m. he fell asleep from the pre-meds he receives before receiving blood and platelets. I layed him down in the bed and he sat up and started screaming and got down on the floor. He then started pounding his head on the bed. He also was starting to try to pound his head on the concrete floor, but the nurse grabbed a pillow and saved him from a major injury. This episode lasted for 15 minutes. It took five of us to hold him down so that he wouldn't harm himself. Needless to say, I sat and cried afterward. He did finally calm down. I really think that part of the reason for this episode was low red blood count and so much medication being put into him.

Craig and I have been in what we call "survival mode". I have to admit, we are tired right now. Craig has tried to go home and get some sleep, but he says he doesn't like being in the house without Alex and me. I don't want to go home and sleep without them in the house either. The trade-off is we all sleep together in a hospital room with the usual hospital interuptions, i.e., endless IV poles beeping and vitals being taken.

I know that even through the difficulties of this situation the Lord is sustaining us. However, this is still a painful process. There are days that I wish God would just give me a guarantee that this process is going to work and that Alex is going to live a long, healthy life. I think if he does live a long life, what will the side effects of all of the chemo/transplant/radiation be. THEN, I remember that I need to take it moment by and day by day.

Sunday, July 10, 2005 8:05 PM CDT

What a weekend........Friday night was good. No fever, good sleep. Alex was even playing with his trains on Friday and Saturday. Saturday night was a different story. At 9 p.m. last night Alex started shaking and got a fever. At about 11:30 p.m. he started breathing funny so I called the nurse. Before we knew it, two doctors and several nurses were in the room getting an oxygen mask out and putting him on a heart monitor. It was kind of scary. We were up a good majority of the night because of Alex's blood pressure dropping, and even with the oxygen mask, his oxygen saturation was not very good. They did a chest x-ray early this morning and it showed that his lungs were "wet". His liver was also enlarged and his face was so puffy that his eyes looked like slits on his face. We found out this morning that his capillaries were leaking. Apparently this happens because of all of the chemicals being pumped into his body. Engrafting of the bone marrow also plays a part in his current condition.

It has been a long night and a long day. As I am typing this, Alex is getting platelets. Hopefully we will get a good night sleep tonight.

Thursday, July 7, 2005 9:02 PM CDT

So, the CT scan ended up being 12 hours later at 2:00 p.m. today. The ER got busy last night and radiology kept calling up and telling the doctors they had to take the ER patients before scanning Alex. ANYWHO!! Alex cannot be sedated during transplant, so I took him down to get his CT and he was so good, and so brave! They told him to lay still and put his hands above his head and he did.

We came back up to the room where we waited for the results of the test. Alex ended up throwing up blood stained mucus again. He was up most of the night last night in pain. The doctors have told us that his digestive tract is like one big, open, bleeding blister. Everytime he throws up he yells ouch! ouch! ouch! His skin on the outside is so raw in places that we have to put medicated cream on it.

The results of the CT came in around 7:30 p.m. tonight and the transplant doctor was very pleased. She said that for what he has gone through his organs look good. He has a little fluid build up, but that is normal.

Thank you for your prayers. This morning was really rough because we had yet another night of throwing up and numerous diaper changes. I was very emotional and anxious most of the day today. I feel much better now that I know that the CT scan results were good.

TTFN

Wednesday, July 6, 2005 10:13 PM CDT

Alex is laying on the couch, totally exhausted from vomiting. He has a fever for the 7th time and now we are waiting to go get a CT scan at 2 a.m. That's not a typo --I said 2 AM!!!! We are not getting much sleep at all and I am feeling extremely anxious right now. Craig is still trying to put in time at work. We are both physically and emotionally exhausted.

I'll update you as soon as I know what the result of the scan is.

Tuesday, July 5, 2005 5:23 PM CDT

Here we are at T+6. Alex received both red cells and platelets today. He's been knocked out for most of the day, due to the pre-meds before blood products are administered. He is also dealing with a mask that is ventalating moisture near his face in an effort to thin down the mucus in his mouth.

I don't mean to be gross, but the mucus is thicker than egg whites and he keeps choking on it. The mucus is so bad right now that on Friday night his oxygen saturation dropped to the 80's and his heart rate was 166 at one point. He spiked a fever five times this past weekend. Now he is on at least four antibiotics. There are five pumps on our IV pole and 11 tubes coming from them. It is crazy!

There is good news. Dr. Weirsma thinks Alex is doing well all things considered. She said that his kidney's are functioning nicely and that he looks good. Prayers are being answered.

It is so overwhelming to think about the fact that they have stripped him of all of his bone marrow and immune system. We are basically keeping him alive by IV until his bone marrow starts grafting and producing again.

Please pray for my friend Grace. I have mentioned her in my updates before -- she's been a big encouragment to me. There was also a picture on the website a few months ago of her daughter Katie and Alex with sunglasses on. She found out that her sister has terminal lung cancer. Her sister is only in her forty's and has two children. Grace just lost her father in December.

Thanks for the prayers -- TTFN

Thursday, June 30, 2005 9:06 PM CDT

Today was harsh. Alex was vomitting mucus. The mucus builds up in his mouth and because he doesn't know enough to spit it out, he holds it in his mouth and ends up throwing up. He has also had diarrhea so badly that his electrolytes are extemely low. The doctors are seeing fit to put him on IV nutrition as well as the feeding tube because he vomitted 1000 ccs up on Tuesday. His magnesium levels are also low.

Alex's lips are twice the size they usually are and they are cracked and bleeding. He has sores in his cheeks, down his digestive trat and in his bottom. He shakes and cries everytime we change his diaper. It is so sad.

In spite of all of these terrible things going on, he was required to walk down the hall at least three times today and he did it. He is so strong and brave. We are so proud of him.

Wednesday, June 29, 2005 7:39 PM CDT

Transplant day -- what a day......first, a wierd coincidence.....we were married at 11:00 a.m. on June 29, and Alex's transplant took place at 11:00 a.m. on June 29.

Anyway, the transplant went something like this. There were about eight people in the room and Alex was pre-medicated and hooked up to monitors. The transplant nurse came in with two HUGE syringes full of Alex's harvested bone marrow. The doctor asked Alex to eat a popcicle, but he was so medicated, he didn't want one. The transplant nurse told us that when she started to administer the marrow into Alex that he would vomit, and he did. It was so sad. I held back my tears for his sake. Craig layed with him in the bed while the procedure was happening. At one point Alex reached out his hand so that I would hold it. I've said it before, and I'll say it again, it is so hard to see him suffer.

The procedure was over in about 20 minutes. Alex has had monitors on all day. He is so weak and tired. Craig and I assumed our positions/shifts in the rocking chair. About an hour after the procedure, Alex vomitted again.

The preservative in which the marrow is harvested smells like rotten garlic. This smell will be on Alex's breath for 24 to 48 hours. The whole room smells of it.

Tomorrow will be T+1 (one day after transplant). We will continue counting the days like this from now on. Our goal is T+100. The next few weeks in the hospital are a waiting game. We must wait for the marrow to find it's way home and start producing white and red blood cells.

A wonderful lady who goes to our church (Mrs. Amos) gave me a devotional book called "Streams in the Desert) On June 27 it was as if the Lord was preparing me for the next few weeks. The devotional spoke about God being our strength. The last paragraph said this: "'The Lord is my strength' to sit still. And what a difficult accomplishment this is! I often say to ohers during those times when I am compelled to be still, 'If only I could do something!' I feel like the mother who stands by her sick child but is powerless to heal. What a severe test! Yet to do nothing except to sit still and wait requires tremendous strength."

"The Lord is my strength!" "our competence comes from God" (2 Corinthians 3:5)

Monday, June 27, 2005 8:40 PM CDT

Alex didn't escape the NG tube. He stopped eating and because nutrition is key -- especially right now -- at 11:30 a.m. this morning I took him to the procedures room and the nurses put it in. It was SO SAD......Alex started yelling "I'll eat!! I'll eat!!" He cried and gagged and ended up throwing up a little later. He has been staring and sleeping all day. My poor baby. Again, we have been sitting in the rocking chair all day.

I did get out for a little bit this evening. My sister Sue and I went to Target where we were able to purchase two new Thomas trains. Alex was happy to see them.

The NG tube is making him gag and he is not talking. He keeps pointing at the things he wants or needs. We have one more day of rest and then Transplant Day.......to be precise, at around 10 a.m.

We know that we have not seen the worst yet, so please keep praying.

Sunday, June 26, 2005 9:04 PM CDT

Well, Alex has endured 96 hours of chemo. I pray that we never see another bag of chemo again. Thursday and Friday were really difficult days because of the steroids. By Friday night, Alex had lost every ounce of energy he had. Craig and I have been taking one hour shifts in the rocking chair holding him. It's the only thing that comforts him. Alex has been sleeping all night since we got here, even through the diaper changes every hour on the hour.

Saturday was the only time, so far, that he has vomited. We are praying that his appetite picks up tomorrow so that he doesn't have to have the NG tube put in for a source of nutrition. He asked for -- and ate -- scrambled eggs this morning, and this afternoon he ate a pretzel.

Thank you for the prayers. Alex has been taking his meds without too much of a hassle.

It's so hard to see him look so bad. He has circles under his eyes and he just stares or sleeps. I can't imagine what my baby feels like on the inside. In spite of all he has endured over the last 96 hours, he looked at me and said -- and I quote -- "I think I feel a little fine right now Mommy." Everytime Craig and I would pick him up, he would give us a kiss on the cheek or neck. I admire his strength.

Wednesday is going to be a big day for Alex. Most children throw up while their stem cells are being infused because of the preservative they are stored in.

God has been gracious to us each and every day that we have been here, and I keep reminding myself that His grace is sufficient for the day.

I'll try to keep the website up-to-date as much as possible, especially over the next few days.

As Tigger would say.....Ta Ta For Now.......TTFN

Thursday, June 23, 2005 4:37 PM CDT

One word -- steroids!! I cannot tell you how much I hate them. Alex has been miserable today -- all because of steroids. Don't get me wrong, they are absolutely necessary, but they have an awful effect on my son. When we checked in yesterday morning, Alex was happy and playing with everyone. Today, at one point, he was wanting to rip down all of the pictures off the wall that we brought from home. He also ended up curling up in a ball on the floor and bursting into tears.

He's been sleeping for a couple of hours now -- I hope he sleeps tonight. Last night he was shooting baskets in the bath tub at 11:00 p.m.

We upacked yesterday and decorated the room with Thomas the Tank Engine stuff. Our room is great. It has a window seat just big enough to make into a train table. Alex loves it! Well, dinner is here, so I must go.

Tuesday, June 21, 2005 8:46 PM CDT

Long time -- no update.....
We have had a busy week of preparation for transplant. As soon as we have a room number and are settled in tomorrow, I'll let you all know.

The last week has been bitter sweet. Alex and I have been hanging around the house. He has had such energy and a good appetite!! It's been a blessing to see him RUN around. Back in November and December he couldn't even climb the steps in our house. I've had the time to clean and organize some things that I've wanted to get to for months. Alex has helped me vacuum the house from top to bottom. For those of you who really know Alex you know that is something he LOVES to do.

Right now, we are in the midst of packing up half the house to take to the hosptial with us. We leave tomorrow morning for our six week stay. Alex starts the 96 hours of chemo tomorrow.

Please continue to pray for us. Here are some specifics:
1. Alex is going to need to eat popcicles or ice chips during parts of the transplant process. This may not seem difficult. However, it can be an issue because Alex is three and has a mind of his own.

2. Alex needs to wear a medical mask if we should have to leave the floor and also after transplant. We have "worked with him" and created a "tent" over his stroller in the past, but he really needs to give in and wear a mask for his own safety.

3. Stamina -- for all of us. Alex is going to have to go through hell on earth over the next few weeks. I get really grumpy when I worry and I am sleep deprived. Craig still has to try to maintain a job through all of this.

We have seen other families go through this, and there are going to be three other families going through transplant at the same time we are.

I was just reading this morning in my Bible about letting the days troubles be sufficient for the day. God's grace will get us through, I know, but it is going to be a bumpy ride.

Tuesday, June 14, 2005 7:55 PM CDT

We went to Clinic today for the first time in almost two weeks! Craig went with us since we had two appointments. The first appointment was a follow-up with the surgeon. Alex is healing nicely and getting his appetite back.

The second appointment was somewhat difficult. We met with the transplant team and we were given a seven page bonemarrow/stem cell transplant consent form to sign. It was very difficult because the transplant team goes into painful detail about what to expect. The hardest thing to hear is that even though Alex has come a long way and things look good, there are no guarantees. They also told us that Alex is going to be sicker than we have ever seen him. That is hard to imagine. We felt so emotionally drained after this appointment.

I truly think it all goes back to trusting God one day, and sometimes one moment, at a time. I feel physically sick. I've had a headache all day. I just have to keep trusting God. (pardon me while I give myself a pep talk)

Alex has been so energetic and he is playing with his trains as I type this update. We have 8 days of somewhat normal life to enjoy, as we go in for transplant on June 22. Starting that day, Alex will receive 96 hours (8 bags) of high-dose chemo -- three days of rest -- then on June 29th (our wedding anniversary) he'll receive his stem cell transplant. Then we wait.

I'll probably update the website more frequently during transplant. Bye for now.

Thursday, June 9, 2005 10:02 PM CDT

What a good week so far! Alex is recovering nicely. We have wonderful news. Dr. Villella called this afternoon to report that he had the final pathology report. The tumor that was removed from Alex during surgery last week has NOT ONE live neuroblastoma cell in it. Again, an answer to our prayers. God has truly been faithful to us.

The doctor said he is "very, very happy" with everything right now. Again, he said that this is the best possible position Alex could be in to go into the bone marrow transplant process. This news is truly wonderful and overwhelming at the same time.

We are getting some company tomorrow. Faye and Vernon, our North Carolina parents, are flying up here to visit with us. I am excited because they will get to meet Alex for the first time.

I hope you all are as encouraged by God's faithfulness as we are.

Barb

Sunday, June 5, 2005 3:40 PM CDT

We are home already!!! We walked in the door at about 3:15 p.m. The surgical residents came into the room today and said to us that from their stand point, Alex was ready to go home. He is eating and pooping. I wouldn't normally give you those details, but those two things are very vital to the recovery process. He ate cereal for two meals yesterday and was playing with his trains. I think he over did it yesterday because he is kind of sore today. (he's still playing with his trains)

God was so gracious to get us through this process. Craig said to me yesterday "who would have thought that Alex having major surgery would be our easiest stay in the hospital"? I really think that it is because of the faithful prayers from all of you on behalf of us.

In case you didn't see the website on Friday, Alex's surgery was a success in that the surgeon was able to remove most of the tumor, leaving only bits and pieces on blood vessels behind. The doctor is confident that the rest of the tissue left behind is dead and will be taken care of during the high-dose chemo before transplant and the radiation after transplant.

We are scheduled to be admitted for transplant on June 22. Chemo will start June 22 and the stem-cell transplant will take place on June 29. We've heard a lot of things, good and bad about what we may experience during transplant. Please pray that we will take it one day at a time. There are some things that we can plan for and some things that we can't. Pray that the things that we can't plan for we will leave in the Lord's hands.

Thanks for leaving messages in the guestbook, it really keeps us going!

Thursday, June 2, 2005 5:42 PM CDT

Surgery is over!!! It all started yesterday with bowel prepping......need I say more? (I won't)

We left our room and headed for the OR this morning at 6:30 a.m. Alex went with the surgeon at 7:20 a.m. and he didn't come out of surgery until 2:30 p.m.

The news and the prognosis is good though. Dr. Parry, Alex's surgeon, said the operation went very well! What tumor was left looks dead! The surgeon scraped the tumor off of the right kidney, so they were able to save his right kidney. His right adrenal gland had to be removed because it was wrapped in dead tissue from the tumor. Dr. Parry was able to "fillet" some of the tumor off of the major artery that it was wrapped around.

A few minutes after speaking with the doctor, we were allowed to go back to recovery to be with Alex. He was sitting up on the bed and asking for mommy to hold him. Craig and I were in shock that he was even awake, let alone sitting up. Don't get me wrong, he is in some pain and the doctors have all said that this surgery was quite an undertaking. After Alex recovered for a while, we were sent back to Rainbow 2 and not the PICU!!

God has been so faithful and so good to us through this process. Thank you again for your faithful prayers and constant encouragement. I'll keep you updated as things continue to happen.

Monday, May 23, 2005 7:02 PM CDT

We have had a minor delay for surgery. Alex's oncologist just called about an hour and a half ago and said that surgery will not take place until June 2. The reason for this delay is because Dr. Perry, Alex's surgeon, would like to see Alex's platelet level increase on it's own a little bit more than it has. He's had a lot of transfusions lately.

We won't have to go through the preliminary transplant tests again, however, transplant has been delayed by a week as well.

Some rescheduling has to take place, but I know that Alex is in God's hands and that this delay must be necessary.

I'll keep you up-to-date as I get more details. In the meantime, as always, we covet your prayers.

Monday, May 23, 2005 6:18 AM CDT

Good Monday morning everyone.....I can't wait to share some very good news with you all.

I wish I would have had the time to update the web page sooner than this, but this weekend has been crazy busy.

It all started Friday around 4:30 p.m. Alex's oncologist called. He started the conversation by saying that he had tried to call earlier, but there was no answer. (I was in the shower). Dr. Villella wanted to tell us that all of Alex's scans look good. The tumor has shrunk some more and the PET, CT, and MiBG scans all look good. The doctor went on to say that Alex is in the best position he could be going into transplant in June!!! The doctor also said he was very happy. Our doctors are always saying things like they are "cautiously optimistic", and rightly so. Alex's disease is very aggressive and can build a tollerance to chemo if it comes back. Dr. Villella said that he called because he knew we were going on our Thomas ride on Saturday and he wanted us to enjoy our weekend. I told him that my b-day was Sunday and that this was the best gift I could have received.

We are headed off to clinic right now for some blood work. Tomorrow, around noon, Alex will be admitted to RBC and then we will meet with the surgeon to discuss the details of surgery on Wednesday morning. I'll try to update the website as soon after the surgery as possible.

Thank you for your prayers.......they are being answered. My friend Grace gave me a verse from Psalm 57.....Be merciful to me, O God, until these calamaties have passed. I keep praying for God's mercy, and I thank him that he is being merciful to us in the way that he is caring for our son. I'll leave you with this......There is a sign on the wall in one of Alex's doctor's offices and I think about it all the time........It says "I treat, God heals". I truly believe that the chemo that the doctors are treating Alex with is doing the job, but God is allowing the healing.

Friday, May 20, 2005 7:48 AM CDT

Good morning everyone......What a week!! This is the first morning this week that we didn't have to be at the clinic or the sedation unit. Alex was a real trooper through all of the testing he had to go through. He had seven different tests this week. Every morning he woke up, we had to explain to him that he couldn't have juice or cereal. When he woke up this morning he asked if the doctor said he could eat. We told him yes, and he had some juice and cereal.

Tomorrow is a very big day for Alex! He is going to get to take a train ride on Thomas the Tank Engine at the Cuyahoga Valley Scenic Railroad. The railroad is allowing us to come an hour before the ride so that Alex can check out the train first hand without the crowds around. (his white count is still pretty low) I'm taking my Clorox wipes to wipe the seats before the ride. As soon as the ride is over, we will have to leave because Alex cannot be exposed to too many people right before surgery.

Speaking of surgery.......our schedule next week is pretty hectic. Monday we go to clinic to check his blood levels and he will possibly receive platelets and red blood cells. Tuesday at noon Alex will be admitted to RB&CH and we will consult with his surgeon regarding his operation. Surgery is scheduled for early Wednesday morning.

I'll keep you updated as much as possible throughout next week.

Craig update our photo journal, so take a look!!!

Monday, May 16, 2005 9:13 PM CDT

Hi Everyone --

Sorry it has been a while since I've updated the website. It's been a little crazy around here. First, we have had a lot of clinic appointments, and second, Alex hasn't had much energy, so I've been holding him pretty much around the clock on the Lazy Boy rocking chair.

We went to Clinic today and Alex had to get platelets again. He's been pretty low lately. Platelets are always the last to recover. The doctor told us today that surgery is scheduled for May 25th. Please pray for Alex this week. He isn't allowed to eat tomorrow morning, Wednesday morning, or Thursday morning because we are scheduled to be at the sedation unit for several pre-transplant tests. He's also going to need a blood transfusion on Wednesday morning. My friend Denise is coming with me tomorrow, Craig is coming on Wednesday and my friend Grace is coming with us on Thursday. God has blessed us with such amazing gracious friends.

Speaking of amazing, gracious, not to mention wonderful, friends........After hearing about Alex's restrictions after transplant i.e., no playing in mulch or digging in dirt or sand, my friend Melanie did some research. Melanie found a thick rubber mat material that is now used on commercial playgrounds, for Alex's play area. Her husband Nathan talked to their church (Messiah Lutheran) about our situation and they donated materials to redo Alex's play area. Nathan took it one step further and said that they should just dig out the area where we were planning to put a patio. Our neighbors got in on it too!! Through pouring rain on Saturday and chilly conditions on Sunday, about 15 guys finished Alex's play area and almost completed our entire patio!!! It was a huge undertaking!!! The generosity was so very humbling and overwhelming. Talk about loving your neighbor!!! Thank you to Nathan for planning this project. Thank you Will and Mark for coming over. Thank you Stan, D.J., Eric, Bill, Larry, Dean, Ken and Ken, John and John, Dan, Joey, Mike, Bridget's husband (I can't remember his name). Finally, to the wives.......oh how I appreciate you giving up your husbands for a weekend. Thank you Sandy, Donna, Dee and Dana for providing food and Suzy for the drinks.

Our hearts are overflowing with gratitude. What a blessing you all are in our lives. We treasure all of you.

We'll have photos on the website photo album later in the week, so keep checking back!

Bye for now....

Tuesday, May 10, 2005 6:58 PM CDT

What a weekend......Craig went to visit with his brother Bill. Bill is at home resting. Thank you for your prayers. Bill will be returning to the hospital sometime next week to have a another stint placed in one of the other clogged arteries.

Alex ended up in the hospital Friday night due to "severe dehydration". I tried managing his care at home all week, but he just got too sick. He wasn't producing wet diapers, etc. We were able to be released from the hospital after 24 hours, so I got to celebrate Mother's Day at home.

On Monday we went to clinic and we found out that Alex had contracted a condition due to the dehydration and chemo where he is making to much acid and it is coming out in his bowels. The doctor put him on yet another medication. He is miserable at times.

Thursday Alex has a kidney function and hearing test and then we will stop by clinic to see if he needs platelets.

Well it is time to give Alex his medication, so bye for now.

Tuesday, May 3, 2005 8:19 PM CDT

Our hearts are very heavy tonight.

Alex has been sick to his stomach and vomitted a little today, but we think we have it under control.

Please pray for Craig's older brother Bill. He is 38 years old and had a moderate heart attack today. He has a wife and four little boys. They live outside of Washington D.C., so Bill was life-flighted to a very good hosptial that specializes in heart surgeries. Bill went to work as usual today and that is when he started having the chest pains. Some co-workers noticed and offered to take him to a hosptial near by. Later this evening, he was flown to Fairfax hosptial where they specialize in various heart conditions. Bill is in good shape and appeared to be in good health. The doctors think his condition may have come from a childhood illness. The doctors were also very surprised that such a young person had such a bad heart condition. Two of his arteries were 100% blocked and one was 50% blocked.

We are all very upset by this news and we covet your prayers.

Sunday, May 1, 2005 5:29 PM CDT

Alex was able to start chemo on Thursday because following the bone marrow harvesting he was doing so well. Dr. Weirsma, his transplant doctor, walked in the room on Thursday morning and Alex was down on the floor with his trains again, and she said apparently she was the only one who knew what happened in the OR the previous day. She told Craig and I that her adult patients take two days to get out of bed and Alex was out of bed just hours after his procedure. I must say, Craig and I are thankful for all of the prayers and VERY proud of our little guy. He is such a trooper.

I'm not sure if we are getting out of the hospital tomorrow afternoon, or Tuesday morning. It all depends on how long Alex has to be hydrated after chemo. Speaking of chemo, Alex has tolerated this round of chemo pretty well so far. The doctor cut his chemo dose back by 25% this time in hopes that he wouldn't get as sick as he has in the past with this particular regimen. I will be administering IV Zofran (an anti-nausea drug) when we go home and hopefully Alex will escape "the pukes" this time. (a technical term the Docs use -- ha ha)

This week we start with one of eight pre-transplant tests. Pray that Alex will stay well enough to see the pediatric dentist. The dentist needs to make sure that Alex has no cavaties before transplant. Any little bit of infection during transplant can cause big problems. The following week he will have another kidney function test which require us being at the hospital for the majority of the day. During the kidney function test, we have three hours to kill, so we scheduled his hearing test to take place. Cysplatin (one of the chemo drugs) causes hearing loss -- in fact 70% of the children who receive this drug end up with hearing aides within the first year after transplant.

The 17th, 18th and 19th of May, we will come to the hospital on an out-patient basis and Alex will be sedated and undergo several tests. Everything from CT scans to heart scans, to bone and bone marrow scans. Providing Alex's blood counts recover well, we are looking at surgery to remove the bulk of the dead tumor the week of May 23rd. If his counts don't recover quickly, he'll have surgery the following week. After two weeks of recovery, around June 13th, we will enter the hospital for 96 hours of chemo and then the stem cell transplant. We won't leave the hospital until the first week of August.

Hmmmmm, I wonder why our heads are spinning??? As you can see, there is a lot to pray for -- including our sanity.

Thursday, April 28, 2005 7:02 AM CDT

Wow.....what a day yesterday. We arrived at Rainbow 2 at 9 a.m. Alex was scheduled for his procedure at 11:30 a.m., but due to some delays in the operating room, he ended up going in at 12:45 p.m. The procedure only lasted an hour and a half. Dr. Weirsma came out to the waiting room and told us they were finished and pleased with his counts.

Later in the evening, Vicki (Alex's transplant nurse) stood in the door-way with her mouth wide open. She said that Alex had made a liar out of her. She had been preparing the Chief Resident and the nurses for how uncomfortable and bad he would look and feel after this procedure. When Vicki walked in, Alex was on the floor playing with his trains! He had not had anything but Tylenol for pain. Vicki was so happy to see how well he was doing. He has 100 holes in his hip bones and he was sitting on a tiled floor!

This is truly an answer to your prayers. God gave us so much grace yesterday......we kept Alex busy and he didn't miss the fact that he couldn't eat as much as he has in the past. The biggest answer to prayer was when Vicki told us they were able to capture enough cells for transplant and also two back-ups. I get chills everytime I think about that because Alex had two failed attempts at apherisus. To quote a verse in Psalms, "the Lord has done this and it is marvelous in our sight". Your prayers are not vain......thank you.

Alex has a day of rest today and then tomorrow will start his final round of chemo before surgery and transplant.

I'll keep you updated......

Tuesday, April 26, 2005 9:17 PM CDT

What a day at Clinic. Our appointment was for 9 a.m. and we left at 4:45 p.m. Alex needed a red blood transfusion and he also received platelets. During our visit, Alex's doctors came to visit. His transplant doctor informed us that after the bone marrow harvesting (taking place Wednesday morning), we will stay in the hospital and Alex will receive his 5th and final round of chemo. That means we will be in the hospital until next Tuesday. Because of receiving a dose of Cytoxan a couple of months ago to prepare him for an unsuccesful try at stem cell harvesting, he doesn't need to have an additional dose of Cytoxan -- which would have been round six. (it's a little confusing, I know, but that's the way it is)

After Alex recovers from this next round of chemo, he will have 2 weeks of testing required before transplant takes place. (the weeks of May 9 and May 16) Tests like MiBG, pet scan, a trip to the dentist, EKG, Muga scan, kidney function test, etc. The week of May 23 Alex will be operated on to remove the bulk of the tumor before transplant. Two weeks after surgery, around June 13, we will be admitted to the hospital for transplant. Our transplant nurse said not to expect to leave the hospital until around the first week of August.

Needless to say, we are overwhelmed. The word that keeps popping into my mind is trust. We have to trust in the One who created Alex. It's easier said than done, but that is when I have to ask God for grace to see us through one day at a time.

Monday, April 25, 2005 8:45 AM CDT

Good morning from snowy Cleveland....that's right, it's April 25 and we in the frozen tundra have 10 inches of snow!!!

Sorry about not updating last week, but things have been busy. Not only did our car need repairs twice last week, but Alex had to go to clinic three times. I'm so thankful that we live close by.

Alex's platelet levels have come up on their own.....WOO HOO!! His white count is also in the double digits....HOORAY!!! In all seriousness, I am thankful to the Lord for hearing our prayers regarding his white count. His HGB level is falling and the doctor told us to plan on a long day at clinic tomorrow because he will probably need a red blood cell transfusion.

We had an unexpected visit to Clinic on Friday because Alex needed an X-ray on his left foot. He was riding his pedal coupe and one of the pedals slipped and came down on his foot. Poor Nina (the girl who lives with us and helps us out) carried him about a mile all the way home!! She shouldn't need to work-out for the next two weeks! He wasn't able to put his weight on his foot, so the doctor wanted an X-ray. So far there are no fractures, but we need to watch him because his bones are brittle right now and fractures could show up later.

As far as we know, bone marrow harvesting will take place on Wednesday sometime. This requires Alex going to the operating room where they will have to go directly into the marrow with a needle and pull out the stem cells for harvesting. We will only see two holes on the outside of each of his hips, but on the inside, he will have 100 holes.

We need people to pray specifically for Alex this week.

1. pray the doctors will be able to harvest all of the stem cells Alex will need for transplant....they are shooting for five million.

2. pray that he won't have any fractures in his hip bones from this procedure.....this is a possibility.

3. pray that Alex can endure this procedure without too much discomfort.

He is in such good spirits right now and I know that the Lord is uplifting him. Another blessing......thanks to blizzard-like conditions, Craig and I were very productive around the house this weekend getting things re-organized. (it's taken us months)

We really do covet your prayers and we thank you for your faithfulness in praying for us.

Monday, April 18, 2005 6:55 PM CDT

We had a very short visit at the clinic today -- YEAH!!!
Alex's white counts are finally starting to come up slowly, but they are coming up. His WC was 7.4 today. If you remember, it was only 1.4 on Friday.

Vicki (his transplant nurse) thinks it would be best to wait until a week from this Wednesday to do the bone marrow harvesting. Alex's Oncologist agrees. The longer we give his counts to come up, the better. We do have a clinic appointment on Wednesday that will take most of the day. Alex needs a kidney function test and this entails us going to radiology where he will be injected with dye and have blood withdrawn. Then, we will keep ourselves busy for three hours, return to the hospital where his blood will be tested for another hour and a half at 20 minute intervals.

Please pray that Alex will tolerate the test. He was a real stinker today at clinic over getting his vitals done. Actually, all the kids were in a bad mood at clinic today -- but who can blame them?

Friday, April 15, 2005 6:29 PM CDT

Alex�s clinic appointment went pretty well today. He needed platelets, but his count was higher today than on Tuesday. His white count doubled from .7 to 1.4 and he is no longer neutrapenic -- which means he is no longer on the 5100 mg of Zoscyn. YEAH!! We will return to clinic on Monday to check his white count and Kelly said we may be able to do the bone marrow harvesting next week after all. I�m not counting on it only because we know his bone marrow is �tired� and has been taking a long time to rise.

After we returned home from clinic today, Alex said he wanted to go outside and ride his pedal car. He pedaled around the block. It was a little chilly today, but the sun was out and it was a beautiful day to be outside. We haven�t been outside in so long. Two of our neighbors stopped us to say hello. It was SO nice to see Larry and then Jane. Our neighbors have been so kind, loving and thoughtful toward us.

Thank you everyone for your prayers over the past couple of weeks. As I was walking down the sidewalk, following Alex in his pedal coupe, I was so very thankful for the beautiful day that God had given us. Beautiful not only because of the sunshine and blue skies, but beautiful because Alex had energy enough to pedal his car and go for a walk with his mom.

Tuesday, April 12, 2005 9:56 PM CDT

Alex, Nina and I went to the ICC to check Alex�s blood levels today. His hemoglobin�s and platelets were low. His platelets were only five � he had bruising on his arms. Blood and platelets were ordered and we spent the day in a bedroom at the clinic. Alex also lost 2.2 pounds because of being sick with the flu and loss of appetite as a side effect to the 5100 mg of antibiotics he is taking right now. Our nurse talked to a nutritionist and she suggested that we give Alex Pediasure for the next few days in order to bring his weight back to normal. Two pounds doesn�t sound like a lot of weight to a normal person, but to a child with cancer, nutrition is key and losing weight is not an option.

Alex�s white counts aren�t even up to one yet � they have only risen to .7. The doctor is convinced that Alex�s bone marrow is tired from all the chemo and from being sick. We will be traveling to clinic on Friday to check his platelet levels and then, on Monday, his white blood count will be checked. Our transplant team doesn�t think that Alex�s white count will be high enough to harvest his bone marrow next week; therefore, we�ll be waiting yet another week to try to harvest the bone marrow.

This whole process is a rollercoaster/waiting game. A wonderful woman named Marliese, who lived and survived life in Nazi Germany, wrote me a note last week and told me that one of her favorite hymns is �In His Time�. That is something I have to remind myself of all of the time. None of this is my timing, but God�s.

Please pray that Alex�s counts will start to recover. The longer his counts are down, the more susceptible he is to germs.

Friday, April 8, 2005 4:11 PM CDT

Hi Di Ho Everyone��..I�m trying to inject some humor into this entry because it wasn�t a humorous week. We spent less than 24 hours at home because Alex ended up getting the flu � then Craig and I got the flu also. That�s right; the three of us were in the hospital� with the flu� all together� all week. I told Craig that it�s pretty bad when a member of the oncology team walks into your room and says, �This is awful, this is just terrible�. We were not allowed out of our room and there was a sign on our door that said �Contact Precautions�. Anytime that anyone came into our room, they had to wear a gown and gloves. It was like a scene from a bad sci-fi movie.

There was some good that came out of this situation. Craig and I had some good time to talk and pray together last night. Our pastor�s wife Grace made a special trip to the hospital to give us some spiritual encouragement from Kay Arthur�s book �Beloved�. It touched our hearts and refreshed our spirits. We have been very discouraged the past few weeks, but Kay Arthur�s words were very encouraging to us. Thank you Grace. The words from Kay Arthur I read reiterated what my friend Barb had been reminding me of last week. Thanks Barb.

I want to share a little of what I read because it was so encouraging to me. I don�t have the time or the space to share it all, but here goes�. �Have you ever felt caught or trapped in a situation that seems absolutely insane, horrid, unbelievable, inconceivable? All of a sudden your plans, dreams, hope are shattered.

It�s like a nightmare. This can�t be happening to me, you think. It will alter the course of my life. It will ruin everything! You wonder how you will survive. Gloom settles like a fog over your heart and mind, and dire forecasts of danger loom through the night of your imagination. Suddenly you panic� (and I do, then I have to remember that God is our Shepherd and we are his sheep)

Then it continues�� So rest, little sheep, your Shepherd is there. He is in control. Whatever comes to you has been filtered through His fingers of love, and it will serve to accomplish His purpose.�

Sometimes those words aren�t easy to hear when you are watching your child suffer through such agonizing procedures. Life is not easy, but I know if I truly believe in God, it�s not about what I feel, it is about what I believe.

Tuesday, April 5, 2005 12:39 AM CDT

Just a note to let everyone know that we were readmitted to the hospital last night. Alex was throwing up all day yesterday, so the doctor thought it best to bring us in.

We'll be here through at least tomorrow morning. I'll write more later.

Sunday, April 3, 2005 4:54 PM CDT

Well, we are home. Not in time for Alex's birthday, but we are home. Our next clinic appointment will be on Wednesday morning. Alex still has mouth sores and no white blood cell count, so he is very vulnerable to infections right now. The hospital is sending out antibiotics that he will have to take 3 times a day. 2700 mg all together. I will administer the antibiotics through his broviac, just like I do the growth factor.

On Alex's birthday, the Child Life Specialist, Jenny made sure that Alex's room was decorated and she even ordered a cake with a train on it. One of the volunteers made a train out of construction paper and hung it on Alex's door. The steam of the train spelled out Happy Birtday Alex. The nurses all sang happy birthday to him. Rainbow 2 staff is the best.

Alex had to have a CT scan yesterday. That was a little scary because it was not scheduled. He had some red underneath both of his eyes and his doctor thought he had a sinus infection. The scary part of the CT was knowing that sometimes NB can travel to the brain, so we waited with baited breath until the results came back. Everything was clear -- he doesn't even have a sinus infection. The Lord answered our prayers.

Jordyn was back in the hospital this week due to a fever, but Brooke got to go home. Please pray for all the children on Rainbow 2 -- especially those whose parents can't be with them. This weighs on my heart heavily. I don't know the circumstances behind why some of these children are left alone for days at a time, but it is painful to see them suffer with no support. I have to say, the nurses on Rainbow 2 are extrodinary because no matter how busy they are, they try to comfort the kids whose parents can't be there.

Thursday, March 31, 2005 9:13 PM CST

Hello Everyone,

Barb asked me (Lisa) to give you all a quick update on what�s happening with them at this point. Alex was admitted to the hospital last night due to a fever. He is now on antibiotics. Barb said he was not feeling well at all and he also has mouth ulcers from the last chemo treatment. It�s very difficult for him to eat and swallow. She said he cries when he swallows. She also mentioned they would be checking Alex�s blood counts while they were there at the hospital. If his white blood cell count is under 500 they will keep him until Saturday (otherwise they will go home late Friday). I believe she also said Alex would probably receive transfusions if his counts are low. She asks that you keep them in your prayers. They are all under so much stress and are so tired.

Sunday, March 27, 2005 4:43 PM CST

Hello Everyone --

Sorry I haven't kept things up-to-date this week. We have been in the hospital for round 4 of chemo. The first three days were really difficult because of the steroids. Friday night was the only night we were able to get some sleep. Poor Alex. Everytime he has to have steroids as part of his regimen, he is just miserable. It makes him bite things and throw things and cry a lot. He was so miserable on Wednesday night that he stood by the bed and laid his head down and was trying to sleep standing up. Needless to say, we are all exhausted. The steroids do help keep the vomiting at bay for him. The doctor decided to hold off giving him his last dose of steroids on Friday night to see if that would help him sleep. Alex's red blood cell count was down, so that attributed to his mood also. After a blood transfusion and a good night sleep with no steroids, our little Alex was back to himself.

After we got home on Saturday morning, Craig's brother Bill and sister-in-law Jackie came to visit. Alex kept calling them Uncle Jackie and Aunt Billy -- it was so cute. Everything he did, he wanted "Aunt Billy" to do with him. It was nice that they could be with us for Easter.

Just to back up a bit, we had a Thomas the Tank Engine birthday celebration last Sunday for Alex. He won't be three until April 1, but the doctor's said his counts would be highest last weekend, so it would be safe to have a couple of friends over. Alex had such a wonderful time playing trains with his friends.

We don't have to go to Clinic this week until Thursday. Yeah! A couple of days at home! Dr. Villella (who Alex calls Dr. Vanilla milkshake) thinks Alex will need platelets by then. As soon as he recovers from this round of chemo (probably around 4/18) we will be admitted for the bone marrow harvesting.

I'm not sure if I had mentioned that Alex's heart test in February was on the lower end of normal, or not, but it was. He had a more in depth test this week and it came out excellent. The parts of the bone marrow tests that have come back have also still looked good. This is something I am deeply thankful to the Lord for.

There are days where I feel I am really failing this spiritual test we have been given because I am easily discouraged -- especially when tired. Craig, Alex and myself are in the midst of the mire right now, with no end in sight. We really do covet the prayers of everyone in times like this. Thank you for praying.

Thursday, March 17, 2005 9:29 PM CST

We are home. Alex�s numbers are not good enough to do the stem cell catch. Dr. Weirsma and Vicki (the transplant team) talked to me and told me that our next step is a bone marrow harvest. This means Alex will go to the operating room for this procedure.

Our schedule for the next couple of months will be something like this�� Next Tuesday, we have to be at the ICC at 10:30 a.m. for blood counts and then we will be going to the sedation unit at 11 a.m. The doctor will be performing a bone marrow check which requires putting a needle into the bone and pulling out a sample of marrow. The marrow sample will be sent to two places here in Cleveland and to Children�s Hospital in Los Angeles. They need these samples tested before the bone marrow harvesting takes place. Alex will also be undergoing a heart test that is more extensive than an EKO cardiogram. The reason for this is because his heart test back in February measured on the lower end of normal. His heart is tested frequently because one of the chemo drugs can cause the heart to become stiff and not beat normally.

After all of these tests are done on Tuesday, Alex will be admitted to Rainbow 2 for round 4 of chemo. We�ll probably be in the hospital until sometime on Good Friday. When Alex recovers from round 4 of chemo, the bone marrow harvesting will take place. (Probably the week of April 18th) We will only see 2 holes on each side of Alex�s hips; however, he will have over 100 holes in his little hip bones where they will be removing the marrow. One of the rare side effects of this procedure is fracturing his hips. Please pray that doesn�t happen. If it does happen it will heal on its own. Recovery will be somewhat painful and Alex will need yet another blood transfusion. As soon as he recovers from the bone marrow harvesting he will get round 5 of chemo and then be operated on to de-bulk the tumor. (Around May 23). As soon as recovery takes place, he will get round 6 of chemo and then will come our 6 week stay in the hospital for the bone marrow transplant. (Probably in mid-June, through July).

Craig and I are tired and somewhat discouraged this week. It�s an emotional strain on all of us. We have to wake up Alex, tell him he can�t eat, only to find out 4 hours later his counts aren�t good enough and we have to go home. This whole process is a double-edged sword. We are thankful for chemo and the other medical procedures, but it is so hard to see our son be put through so many procedures, especially when some of them are painful. Alex is so energetic and smart. I truly admire his bravery.

I am reminded daily that everything is in God's timing and not mine -- that I have to trust that God knows best and the He is soeveriegn over all.

Wednesday, March 16, 2005 10:58 AM CST

Well, for the past two mornings we have been at clinic by 8 a.m. and Alex's levels were not high enough. However, they are pretty confident that he'll be ready for tomorrow. For now, we are at home.

We can praise God that Alex's white count went from .9 to 7.4 in 2 days. Today they were at 9.2

As I have said before we covet your prayers and I will write more later.

Monday, March 14, 2005 8:46 PM CST

We are to be at the ICC tomorrow (Tuesday) morning by
8 a.m.

Please pray that Alex has produced enough stem cells to collect this time. It has been a long 5 weeks of low blood counts for Alex and we are ready to move on. This weekend was kind of tiring because Alex�s moods were so up and down. He was so sweet today though.

I was talking to him this morning about the fact that he can�t have cheerios tomorrow morning because he is going to be sedated. I explained that it was because he was going to have the catheter put back In his leg for a couple of days and he said �yeah, and I won�t be able to get up and walk around, but maybe I can take a ride in the wagon�. He is so brave. I noticed today that his eye lashes are falling out.

I�ll let you know how the procedure goes in a couple of days. In the meantime, we covet your prayers.

Friday, March 11, 2005 7:15 PM CST

We just got home from a long day at the cancer clinic. Alex�s platelets went from 70 to 8 in just a few days time. His white blood count was still less than zero and his hemoglobin�s were 8. Needless to say, Alex needed both red cells and platelets. He was so miserable at the doctor�s office. He was already feeling badly because of his blood counts, and then they had to give him benadryl and Tylenol to combat any reaction to the blood products. Alex fights the sleepiness he experiences from the meds, becomes really grumpy and starts hitting and biting and then he falls fast asleep. His reaction is normal for what he is going through, but it exhausts me.
Vicki, Alex�s transplant PNP, has arranged for a nurse to come and do blood draws on Sunday morning. Vicki will then call me and we will decide if we need to go to clinic on Monday for more platelets, or if he is ready for the stem cell harvesting process again. Vicki has reserved time for him all week in the PICU to have the catheter inserted in his groin so that whenever his white counts are up, everybody is ready to start the process.
Please continue to pray for Alex. He will have to be sedated when the doctor inserts the catheter. For 2-3 days after that, he will have to remain still and, preferably in bed, in order to keep the catheter in place. It�s uncomfortable for him and I think even a little scary. I�m trying to be creative by having things for him to do while he is in bed. Buddy, the rainbow mascot, will also pay a visit. The art and music therapist will also stop by to keep his mind off of things.
I know I am feeling tired and emotional right now, but I really feel I need to say this. Never take your kids for granted � they are a priceless gift from God. Love them, no matter what. I know as parents we get tired from the everyday cares of the world, but what do they matter in comparison to a healthy child? The next time you think you are too tired to immediately fulfill a small request from your child to play with them, do it anyway. The smile on their face and the fact that they will know that they matter to you will make you feel better than a good night sleep or a cup of coffee. There are so many parents at Rainbow 2 who would love to have a normal day at home with a healthy child. Hold your children and tell them that you love them every day. I�ll step off of my soap box now. For those of you who know me, you know I felt like this before I had Alex, I just felt like I needed to say it again��..

Wednesday, March 9, 2005 8:31 PM CST

Yesterday was a fairly uneventful trip to the doctor because Alex didn�t need a blood transfusion � however, he will probably need one by Friday. His white blood count was below zero, and I was a little upset because it has been taking weeks versus days to climb to a decent enough level so that they can collect stem cells. Vicki assured me this is to be expected right now. Alex�s platelet levels were also pretty low, so we are watching him closely.

Craig and I stand in amazement at times because even with low blood counts he has so much energy. He was up several times last night and yet he didn�t take a nap today because he has been so busy playing with his Thomas trains.

The emotional ups and downs of this process are exhausting at times, as I have said before. Last week, Vicki told us that even after Alex comes out of this he will have to have his heart, kidney�s and liver tested for the rest of his life because of the chemo. She also told us that 70 percent of the children she has taken care of end up with hearing aides within the first year after transplant. It was very difficult for me to hear that, but again, Craig reminded me that Alex could be one of the 30 percent that doesn�t. It always takes me a couple of days to process these things, and then I get emotional, and then I take it to the Lord. I realize that my processing is a little backwards, but I am working on that.

In my last entry, I shared with you all that words to music speak to me. The first week that Alex was diagnosed, Craig said that our situation reminded him of a song by Mark Shultz. Since then, two of our friends have written to me and said the same thing. Here are the words:

He's My Son

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
CHORUS
Can You hear me?
Can You see him?
Please don't leave him
He's my son

Those words capture our thoughts exactly.

Friday, March 4, 2005 8:29 PM CST

We returned home from the hospital this afternoon. Alex was very active at the hospital. Of course, he played with his Thomas trains the entire time we were in the hospital. Thomas is such a comfort to him.

Vicki, Alex�s transplant nurse, informed us that the doctors are now talking with Alex�s surgeon about �de-bulking� his tumor. This was a big surprise to us. When Alex was first diagnosed, we were told that it would be too dangerous to operate on the tumor due to the blood vessels that were feeding into it. The position of the tumor was also a big concern. Again, Craig and I see this as an answer to everyone�s prayers.

Last night when I was rocking Alex he sat up, clenched his fists, gritted his teeth and walked over to the hospital bed and bit it. Yes, I said he tried to take a bite out of the foot board of his bed. The steroids are so awful. His moods turn on a dime and you can tell he just doesn�t know what to do with himself. As his mother, I can tell you that it breaks my heart. The steroids are a curse and a blessing.

Now, back to a preview of our future plans; this week we will go to clinic twice to check blood levels. Vicki is suspecting another blood transfusion will be needed on Tuesday. March 14-16 will be the stem cell harvesting days. Please pray they get the 5 million cells they need to perform the transplant. After recovering from the harvesting we will be admitted so that Alex can receive chemo #4. Twenty-one days later he will receive chemo #5. After recovery from round 5, he will most likely be operated on for the �de-bulking� of the tumor. This really is good news. The smaller the tumor before transplant the better. After recovery from surgery chemo #6 will take place � then more recovery time. That will lead us to transplant. Six weeks in the hospital �it all starts with 96 continuous hours of chemo 3 days of rest and then transplant day. For five weeks Alex will endure some difficult days. By that I mean illness, drops in blood levels, etc.

Personally, I am overwhelmed by all of this. Craig reminds me of the scripture that says let the days trouble be sufficient for the day. Everyone who knows me well knows that I refer to myself as Mama Bear and Alex is my cub. Mama Bear worries about her cub. The Lord reminds me daily, that I am not in control, He is. He is our rock and salvation. As I type these words, I am reminding myself of that.

I feel compelled to share something with everyone. One of my favorite cd�s is Fernando Ortega�s rendition of some old hymns � it comforts me greatly, especially in times like this. Since music speaks to me, I know that I�ll be sharing words to songs with all of you often. The first song on the cd has spoken to me so much lately. It goes like this:
Pass me not oh gentle Savior, hear my humble cry, while on others thou are smiling, do not pass me by.
Savior, Savior hear my humble cry�..while on others thou art calling, do not pass me by.
Let me at a throne of mercy find a sweet relief
Kneeling there in sweet contrition, help my unbelief
Savior, Savior hear my humble cry�..while on others thou art calling, do not pass me by.

Please pray for Brooke also. Brooke is one of Alex�s friends at the hospital. Her tumor is not shrinking and has spread. She also has to endure RSV right now. Brooke�s mom is also due to have another child next month. Jordyn, the little girl that wears bikinis all the time is very sick right now due to her stem cell transplant.

Tuesday, March 1, 2005 5:50 PM CST

Just a quick note for today.....

We received the go ahead from the doctor for hospital admission tomorrow through Friday.

Along with the Cytoxan, Alex will be getting a steroid that could really alter his mood. Needless to say, we all will need your prayers.

Sunday, February 27, 2005 9:38 PM CST

Hello again everyone �

I am going to be updating Alex�s website from now on.

Last Wednesday did not go as planned. We went to the ICC (Ireland Cancer Center) to check Alex�s blood counts and then be admitted to Rainbow Babies. Unfortunately, his hemoglobin�s and white count had dropped again, so he received a blood transfusion and we were sent home.

Monday morning a nurse will be coming to the house to do blood draws and then, hopefully, we will be admitted this Wednesday to the hospital. Alex�s hospital stay will consist of receiving Cytoxan by IV through his broviac for two days. Ten to twelve days after our hospital stay we will be return to the hospital. Alex will get the catheter reinserted in his groin, and for two to three days he will have to remain in bed and periodically hooked up to a machine that will catch stem cells.

The process is amazing. Two ports come out of the catheter � one port sends the blood out into a machine that spins the blood and separates it sending the stem cells up into a bag to be harvested. The second port allows the other blood particles to be put back into his body.

Please pray for Alex during this process. He has to remain as still as possible in bed. The last time we tried this process, Alex was such a trooper. I think as long as he has his Thomas trains and his personal DVD player, he should do ok, but it is still hard for an almost 3 year old boy to be still.

Tuesday, February 22, 2005 6:28 PM CST

Hello Everyone � it�s me, Barb

I asked Lisa if I could take the opportunity to update the website while I have the time. We will be admitted to the hospital tomorrow so that Alex can receive Cytoxan. Cytoxan is a chemo drug that will encourage bone marrow to mass produce stem cells. If all goes well, we will try to harvest stem cells again on March 7-9.

Words cannot express how thankful we are for the kindness that people have shown to us through the signing of the guestbook, taking care of our home, visits to the hospital, packages, meals, etc.

Our hearts are heavy at times because of the gravity of the situation we are in, but we have also seen God�s grace through this trial. I feel like I need to count my blessings. The team of doctors and nurses are absolutely wonderful. Alex is being taken care of at one of the best hospitals in the country. Our neighbors, friends and family have been so supportive.

I must admit that trusting God through this trial has been difficult at times, and that this situation has shown me this is where the rubber meets the road with my faith. Either I trust and believe in God, or I don�t. I believe. God has not promised to take away our struggles and trials, but to give us the grace and strength to get through them. God has shown us his grace through the love, care and support of so many people. Were we to thank you all personally, we would run out of space on the website!! Each person that has served us in prayer or deed has served the Lord.

We are cautiously optimistic regarding Alex�s progress since the time of diagnosis. He is so active right now because he has had a break from chemo due to the stem cell harvesting process. Alex is still the joy of our lives. He has such a good sense of humor and he is so caring. It�s hard to believe he is only 2 1/2 when he asks me if I am comfortable while playing with him. He also asks almost everyone he meets if they have a broviac � and then he proceeds to lift his shirt and show them his broviac.

Please continue to pray as we still have a long, bumpy road ahead. Only the Lord can heal Alex�s body completely and that is our prayer.

Thursday, February 17, 2005 8:35 PM CST

Alex has been at home the last few days. The doctor sent him home Monday I think.
I spoke with Barb last night and she said Alex will go for blood draws this upcoming Monday. He will be admitted to the hospital Wednesday and be there through Friday. He will receive a drug called cytoxan and will also receive prednisone while he is there. Ten to twelve days after that he will go back to the hospital for another stem cell catch.

Barb said he is doing well at this point considering the chemo treatments and drugs he has received. She told me about another little girl that was in the hospital at the same time Alex was there. Her cancer is different from Alex�s and she was not doing well at all. She said the little girl could barely walk and her eyes were swollen shut the last time they saw her due to one of the drugs she was taking. Barb said she was so very thankful that Alex has been able to be so active and had not had any really bad reactions to the drugs he is taking. God has been gracious to them and it�s because of your many prayers

Saturday, February 12, 2005 8:43 PM CST

Doctors were unable to do the bone marrow harvest on Friday because Alex�s blood counts were too low. Barb said the doctor called Thursday morning after the nurse came by to draw blood from Alex and wanted them to come in. Alex was eating a bowl of cereal and she had to take it from him because the doctor said not to let him eat anything from that point in time on. They went on to the hospital Thursday. Alex was supposed to be sedated at 6:00 p.m. to start the harvesting procedure. There were three emergencies Thursday evening so they didn�t get to Alex until 8:30 p.m. She said they were up until after midnight. I believe she said they started the harvesting process at 12:30 a.m. and that went until 3:30 a.m. The doctor told her they were only able to collect eleven stem cells. They wanted three to four hundred. So they decided not to continue the process. She said they would try again Saturday, Sunday and maybe Monday IF Alex�s blood counts were good. If not they were going to take the catheter out and send them home. She said the doctor would bring them back in later next week for one night and give Alex something called a growth factor to bump up his bone marrow growth. Then they would try the harvest again.

Barb said Alex was in a wonderful mood all day Friday and eating like a fiend. He had two bowls of cheerios a banana and some chocolate milk. That may not be all. (Barb was talking kind of fast and I might of missed something). Alex had sat in a chair all day Friday and played very contently. He was not supposed to be moving around Barb said, because he still had the catheter in his groin. He is such a sweet boy and so very brave.

Update on Jordan--- Barb said she had her stem cell transplant and was doing well at this point.

Thursday, February 10, 2005 8:15 PM CST

Barb left me a message earlier today and said the doctor had called and wanted them to come in this afternoon. Alex was to have a transfusion of platelets. Then he would be sedated at 6:00 p.m. this evening to begin the bone marrow harvest. They will be at the hospital tomorrow and Barb said yesterday they may be there through the weekend. The doctor is hoping to harvest 5 million stem cells during this procedure. Continue to pray that they would get all 5 million stem cells, for Alex and him having to stay immobile, for Craig and Barb for strength and energy as they care for Alex and for Barb as Alex is sedated it�s difficult for her to see him like that.

Wednesday, February 9, 2005 8:36 PM CST

Alex was unable to begin the bone marrow harvesting process today. His blood counts were too low. A nurse will be going to see Alex at home in the morning at 8:30 a.m. She will be drawing blood to take back to the lab for testing. They should know by noon tomorrow what his blood counts are. He is tentatively scheduled for bone marrow harvesting on Friday. I didn�t get the time from Barb.

She said Alex has been looking kind of bad the last few days. She said he has been pale and has dark circles under his eyes. Part of that comes from his blood counts being low she thinks. She has begun to notice behavior changes when his blood counts are low. He actually becomes some what aggressive and starts hitting and pinching among other things. She also thinks that one of the medications he is on is causing the circles under his eyes. (I think she said it was one of the meds that had something to do with the bone marrow harvesting).

I will talk to her again tomorrow afternoon and will let you know what Alex�s blood counts are.

Tuesday, February 8, 2005 7:13 PM CST

Alex had his weekly appointment at the Cancer Center yesterday. His white blood counts and hemoglobin were low so he received a transfusion of platelets and whole blood. Barb said they were at the Center from about 10:00 a.m. to 6:00 p.m. yesterday evening. They were not able to start harvesting bone marrow today because of Alex�s counts (blood and hemoglobin) being too low. She said they have to be back at the Cancer Center tomorrow at 7:45 a.m. for Alex to have his counts checked again. Doctors will make a decision on whether or not to begin harvesting stem cells based on what Alex�s blood counts show. If they are up they will begin the harvesting process. It all depends on the blood counts. So they will have to play it by ear until the test results come back. Barb is really hoping they can do it tomorrow, if they can�t, it will be another 3 weeks before they can try again. (Alex is scheduled to begin the next chemo treatment next Tuesday). Doctors still have Barb giving Alex 2 doses of neupogen each day to encourage bone marrow growth. Pray for Alex that if this is the right time for harvesting of the bone marrow his blood counts would be good.

Sunday, February 6, 2005 8:45 PM CST

Alex is doing well. Barb says his appetite is increasing and he has good energy. (That is good news maybe he can continue to be off of the feeding tube). He had two bowls of cheerios today. He woke up feeling kind of nauseous but was able to eat after Barb and Craig gave him medication to counter to the nausea. She said he has been laughing and giggling today and said it was good to see him like that.

Barb went to church for the first time today since Alex�s diagnosis the first week of December. She said she cried some. The hardest thing for her was to see other children with their parents knowing Alex couldn�t be with her.

Next week will be a busy week for them. Tomorrow Alex is scheduled for his weekly appointment at the Cancer Center. They will be checking his blood counts. Tuesday he will be admitted to the hospital so they can be begin harvesting bone marrow. He will have a catheter inserted into his groin with two ports. Blood will be drawn from one port, sent through the machine that separates the stem cells from the blood and then returned to his body through the second port. He will be in bed all day on Tuesday and part of the day on Wednesday. He will also have a leg brace on the side where the catheter is located to minimize any movement in that leg. Doctors are hoping to harvest 5 million stem cells during this procedure. Barb is a little nervous about this because of Alex having to stay in bed and not being able to move much. Alex has been taking a double dose of a drug called neupogen. Neupogen is a protein that stimulates the production of white blood cells and bone marrow growth. One side effect of the neupogen is joint pain. Barb suspects Alex is experiencing some of that from time to time. She said one minute he will be fine and then all of a sudden he will have an outburst of crying and will say something is hurting him.

Doctors are looking to do Alex�s stem cell transplant at the end of April. When he is admitted to the hospital they will begin with four days of intense chemotherapy then he will be off for three days then more chemotherapy. Doctors told Craig and Barb to plan to be in the hospital for three to five additional weeks after that. They also told Craig and Barb that it is very, very good Alex is at Stage 1 of the stem cell transplant so soon. That is really big!! Thanks be unto the Heavenly Father for answering prayers and bringing Alex to this point in treatment so soon. It is truly by His hand this is possible.

Barb also said their team of doctors have made the decision to treat Alex�s tumor with radiation as well. They can not operate on the tumor because of where it is located. It is too risky.

Alex�s friend Jordan is back in the hospital. If you will remember a few entries back I told you about Jordan and her bikinis (and pink cowboy boots). Barb tells me she was sporting her bikini and a Mardi Gras mask while wearing her Mom�s high heel shoes last week. She was throwing Mardi Gras beads to the nurses and other patients on the floor. Barb said Alex had four strands of beads. Barb asks that you pray for her. She was in remission for a year. The leukemia has come back.

Wednesday, February 2, 2005 8:22 PM CST

Alex will probably be in the hospital until tomorrow. The doctor wanted to get him re-hydrated. When I spoke with Barb last night (around 8:30 p.m.) he had made it for five hours straight without throwing up. She said he wanted to play yesterday but he just didn�t feel like it. He didn�t have hardly any energy. She was tired she had held Alex most of the day. She said it was hard to see him that way.

Barb also mentioned Alex would probably receive a transfusion today.

I asked her how Craig was doing. She said he was ok. It is hard for him to work and be away from her and Alex. It�s really hard for him to leave them in the hospital. He also travels home to get clean clothes for them when needed. Other days he comes to the hospital after work and may leave again to pick up dinner for them. Pray for him and Barb that Christ would be their strength. Alex seems to be on track for now nothing out of the ordinary going on. He still has a long way to go. I know you all will continue to pray for him that his little body with the help of the chemo would continue to fight the cancer. I am asking the Father to crush the enemy of neuroblastoma that is before them. I don�t know what He will choose to do. But I know that He can.

Monday, January 31, 2005 7:18 PM CST

I spoke with Barb at 8:00 p.m. tonight. She couldn�t talk but a minute because they were on their way to the hospital. Alex was throwing up every hour but she didn�t say when it started. She did say he was unable to keep any of his medications down. She had called the doctor and he definitely wanted Alex back at the hospital so they could began working with him. As always please keep them in your prayers.

Saturday, January 29, 2005 9:04 PM CST

Alex, Craig and Barb are back at home. The results from the solid bone marrow tests are back. Barb said the hospital did three separate tests on the bone marrow, one genetic and two stains------- ALL THREE WERE CLEAR��no cancer cells were found. Thanks be unto the Heavenly Father for that! Alex is scheduled to go into the hospital February 8th and will be there through the 9th for harvesting of his stem cells. They will insert a catheter into his groin, draw his blood out circulate it through a machine that will separate stem cells from the blood and then return the blood to his body.

Alex will go to the Cancer Center on February 7th for his weekly appointment to have blood work done and will probably get a transfusion as well.

The next chemotherapy treatment is scheduled for February 14th. They are looking at the end of April for the stem cell transplant. Barb said there are many, many details that will need to be discussed before the actual date for the transplant is set.

Barb said Alex was inactive all day on Friday and layed on her most of the time. He was very nauseous all day. She said he threw up and the feeding tube came out. (I think she said it happened Friday). They decided to leave it out for now. Today Alex drank two glasses of milk, ate some green beans and little bit of macaroni and cheese. Yay Alex! That�s a lot for a little boy who is still supposed to be nauseous and not able to eat. Barb said if he continues to eat like that they may not have to put the feeding tube back in. Wouldn�t that be great?

ALSO, they found out that a steroid Alex was being given was what caused him to have those fits at night. Hospital staff told Barb of an older child who was given the same steroid became so violent he threw an IV pole out of a window. They decided not to give Alex any of the dosage he was scheduled to receive yesterday----- he had no problem at all. Barb said he was a totally different child last night.

Friday, January 28, 2005 9:12 PM CST

I spoke to Barb last night around 9:00 p.m. She said Alex had had a good day. He had a lot of energy during the day and had been playing. He woke up at 4:30 a.m. and asked Craig and Barb to go to the playroom. They said �No�. (Not at 4:30 a.m.) So they got him back to sleep and they slept until 7:00 a.m. When he woke up at 7:00 he still wanted to go to the playroom so Craig went with him. Later when the Nurse Practitioner came in Alex talked her into shooting some hoops with him.

In the evenings around 8:15 to 8:30 Alex has been having a tough time. I called Barb Wednesday evening around 9:30 p.m. She said he was throwing a terrible tantrum, he had been asleep and one of the nurses came in to check his vitals and he woke up. He went completely out of control, crying, hitting and telling Craig and Barb to shut-up. I could hear him in the background crying. Actually, it was more like wailing. It was hard to hear him like that I felt so sorry for him. Barb said it had gone on for about an hour and a half. Just before I called they had asked for some ativan to help calm him back down. Yesterday when I talked to her she said it did help him and they were able to get him to go back to sleep and he slept the rest of the night. She said they same thing happened last night also but not nearly as severe. They asked for ativan early. He had .4 cc�s around 4:00 p.m. and he had another .3 cc�s a little while before I called. He was crying but not anything like the night before. The doctor(s) have determined that this was being caused by a reaction to the chemotherapy.

Alex finished this round of chemotherapy yesterday. Barb said he was being given a lot of fluids through the IV to make him pee so the poison from the chemo would get flushed out of his system. For that reason they won�t get to go home until Saturday. Doctors wanted to monitor him closely through today.

Barb said the nurses on their floor were wonderful. She said they came right on when she or Craig called for them and that meant a lot. She said every bed the hospital had available in that particular area was full (20 beds) so she knew they were very busy.

Tuesday, January 25, 2005 8:20 PM CST

I have just a quick update today on Alex. I spoke with Barb very briefly this evening and she said everything went smoothly today. Alex had just woke up from a nap and was wanting to do some things.

She said the doctor at the Cancer Center told them Alex's tumor was one sixth (1/6) the size it was when Alex was diagnosed! Praise and thanks to the Lord. How incredible! I know Barb would say thank you for your prayers. And keep praying.

Since the one part of the bone marrow test was inconclusive they will do another one tomorrow.

Monday, January 24, 2005 7:39 PM CST

Tomorrow Alex has his weekly appointment at the Cancer Center. And then they will go to the hospital to be admitted to start chemo. Remember to pray for him because he gets so scared when going to the Cancer Center and hospital because he doesn't want to stay. Also this round of chemotherapy will be different and Barb is unsure what exactly to expect this time.

Barb and Alex will be going to the hospital by themselves tomorrow. Craig has to be at work, but will join them tomorrow evening. Pray that tomorrow would go smoothly for Barb and Alex and that Craig will be able to concentrate while working. Also for strength for each of them.

Monday, January 24, 2005 7:39 PM CST

Tomorrow Alex has his weekly appointment at the Cancer Center. And then they will go to the hospital to be admitted to start chemo. Remember to pray for him because he gets so scared when going to the Cancer Center and hospital because he doesn't want to stay. Also this round of chemotherapy will be different and Barb is unsure what exactly to expect this time.

Barb and Alex will be going to the hospital by themselves tomorrow. Craig has to be at work, but will join them tomorrow evening. Pray for all of them that tomorrow would go smoothly for Barb and Alex and that Craig will be able to concentrate while working.

Saturday, January 22, 2005 3:50 PM CST

I spoke to Barb Friday. They were having a pretty good morning, Nina (she�s 18), a friend from Church stayed with them Thursday night. I could hear her and Alex playing in the background. Barb said the PET scan came back inconclusive. That was because Alex had been so active the radioactive solution they injected him with went into and lit up his muscles. That�s not supposed to happen. The CAT scan showed the tumor size had decreased from 12.7 cm to 7 cm. They do feel chemotherapy is killing the tumor. Barb said the doctor was cautiously optimistic about the decrease in the tumor size.

Only one part of the bone marrow test came back and it did show the liquid part of Alex�s bone marrow was clear of cancer cells. The report on the solid bone marrow is not back yet. They will probably get those results on Monday. She did say when Alex was first diagnosed no bone marrow was detected, it was all cancer cells. I can�t remember if she said that was the clear or the solid part. The doctor did tell them bone marrow responds well to chemotherapy.

The echocardiogram came back showing Alex�s heart was on the lower end of normal. (I think they were looking at heart function). Barb was unsure what that meant. She�s going to ask next week.

Alex�s blood counts are also looking good.

On Thursday Alex had a friend over to play. Barb said he got a little over confident and jumped off of the ottoman in the living room. When he landed the impact to his bones caused him to be in excruciating pain. She said he cried pretty hard.

He was able to eat a little bit on Thursday also. He ate 2 bananas during the day and for dinner he ate two small portions of spaghetti. Go Alex! That was the most he has eaten in quite a while. That reminds me, Barb did mention the chemotherapy Alex would receive next week had a higher likelihood of making Alex nauseous. They have many medications to reduce the nausea. Let�s pray for him that it would be very minimal.

Wednesday, January 19, 2005 9:00 PM CST

Barb and Alex had a good day yesterday, it was just the two of them. Sue (Barb�s sister) left on Monday after being there almost two weeks. She said Sue would never know how much it meant to her, Craig and Alex for her to be there. Barb said she had been such a blessing to them.

Barb shared a couple of very positive things that I have to give God the credit for. She agrees. First, at the Cancer Center on Monday, the doctor and nurse practitioner said they could feel Alex�s liver! It�s the first time the have been able to feel it since Alex was diagnosed! And Alex�s stomach was soft! They were pleasantly surprised Barb said. Secondly, Alex did not spike a fever over the weekend! The doctor was surprised about that. He said he expected them to have to go to the hospital before the weekend was over. If you will remember, the doctor said a couple of weeks ago if Alex did not spike another fever he would be a step ahead of most kids in his situation. Praise God for answering prayer! They have seen God�s hand in many ways the last few weeks. And continue to trust Him for the days ahead.

While at the Cancer Center on Monday they saw one of the residents they had had when Alex was first in the hospital. She remembered Alex and spoke to him. She told Barb it made her day to see Alex because he had a twinkle in his eye. He is a special boy.

Alex�s counts are up, white blood cells are 4.6. He received platelets on Monday and may have gotten more today. Alex had an appointment at the Cancer Center today and was scheduled for several tests at the hospital. She was not looking forward to the appt. today because Alex would have to be sedated for some of the scans. It bothers her to see him sedated. Their appointment was at 9:00 a.m. this morning at the Rainbow Babies Hospital. The first thing on the schedule was an ECO-Cardiogram. Barb said the Rainbow Babies Mascot, Buddy, was going to meet them there and get his ECO-Cardiogram done first to help Alex feel more comfortable. Alex was to have several scans done. He will be sedated for the PET scan because he must lie completely still. He was to have a CAT scan and some other tests done as well. Barb said the CAT scan would tell more about the condition of the tumor. The PET scan is a type of bone scan. They were also going to the Cancer Center to have Alex�s blood counts checked again.

Next Tuesday morning they have an 8:30 a.m. appointment at the Cancer Center and after that they will go to Rainbow Babies Hospital and be admitted for four days. This will be the third round of chemotherapy. Barb said this round will be different from the first two. There will be a different make up of medications (chemicals ?) in the chemo. She�s not really sure what the difference is. She said she doesn�t have to know every single detail because it actually becomes more confusing and overwhelming. She and Craig feel they are in good hands with the team of doctors they have.

Sunday, January 16, 2005 8:19 PM CST

Friday and Saturday were rough days for Alex. Barb said Friday night they were trying to take care of Alex he started choking on the feeding tube and it came out. They had a difficult time getting it back in. She said Alex was pretending to be asleep so she wouldn�t put it back in. They think he has sores in his throat from the chemo making it painful for the feeding tube to be in. He had been coughing a lot and when coughing he would cry really hard. She said it was gut wrenching to have to watch him go through it. He had been running a bit of a temperature 99 to 100 degrees. If it rises to 100.4 degrees they have to go to the hospital. They had given Alex some pain medication before I called and she said that was the first time he had really been pleasant all day. I feel so sorry for him.

Today was a better day. Barb sounded better not as stressed. We even laughed some. It was good to hear her laugh. Alex had lots of energy today and played a lot. They ran out of feeding tubes yesterday. But a medical supply place delivered some last night around 9:00 p.m. Barb had to put it back in again. She said it turned after putting it in his nose and instead of going down his throat it came out in his mouth. He started throwing up. After getting that under control she was finally able to get it back in.

They will be back at the Cancer Center tomorrow for their weekly appointment. Alex will have his blood counts checked and probably get a platelet transfer. And maybe another red blood cell transfusion. They will have to see what the tests say. Remember to pray for Alex as they go to that appt.

Wednesday they will be back at the hospital for additional tests. Barb said they would be doing an eco-cardiogram and a CAT scan. I think she said they would draw some bone marrow (to check if cancer cells were gone) if Alex�s blood counts were good. He will be sedated for these tests.

She said they got nine inches of snow today! Wow. I asked if they would have any trouble traveling to the Cancer Center tomorrow and Barb said no. She said their driveway had already been cleared and the streets in their development had already been scraped.

Thursday, January 13, 2005 9:18 PM CST

Today Alex had his second appointment of the week at the Cancer Center. He, Barb and Sue were there from 9:00 a.m. to 4:30 p.m. He received a blood transfusion because his red blood cell count had dropped significantly over the last few days. (It takes about 4 hours for the transfusion from start to finish). The doctor wanted to go ahead and give Alex the transfusion so Barb and Craig would not have to take him to the Emergency Room over the weekend because he would be exposed to an enormous amount of germs there.

His white blood count is zero right now. On Monday he will receive a transfusion of platelets, which should take about 30 minutes. Continue to pray for Alex that he would not get a fever. That is paramount in importance. Barb did say they took a urine sample from Alex today and his kidneys appear to be functioning well. That�s definitely good to hear. That's answered prayer.

Also, Barb asks that you pray for Alex and his visits to the Cancer Center. He really has a difficult time when they go each week. He thinks he is going back to the hospital to stay. He doesn�t understand that he will be going home at the end of the appointment. Barb said the appointments are long, the shortest one they�ve had is two hours. When Alex got to the room where he would be receiving the transfusion and saw the bed he said to Barb, �I�m not sitting there.� He stayed in his stroller and fell asleep in the stroller for the first two hours of the transfusion.

Pray for Craig and Barb too. Barb has many duties each day that she has to do outside of the normal things a Mom has to do. Here are a few things she does, flush Alex�s broviac, prepare several different types of medications for Alex to take, get up during the night to refill the pump for the feeding tube. She also has to put the feeding tube back in if it comes out. She has to be careful when putting it back in to make sure it doesn�t go into his lungs. These are only a few of the things she�s required to do. Craig is now and has been working a normal schedule. And then after work he comes home and also helps out with Alex. They both have much to do and are most often tired. Sue is still there helping out. I know Barb is so thankful she�s there. What a blessing! (I heard Alex had Sue shooting hoops a couple of days ago).

By the way if you haven�t seen them, check out the photos we posted!

Sunday, January 9, 2005 6:14 PM CST

I caught up with Craig late yesterday evening, as we were talking I could hear Alex playing in the background (what sweet sounds). Barb was out shopping with her sister, Sue. That was the first time she had had the opportunity to be out for an extended period of time. Craig said they left about noon and was gone until about 6:00 p.m. They came back by the house and left again for a couple more hours. Sue has returned to stay with Craig and Barb for a while Barb told me earlier her stay would be open ended. Barb�s parents also came in on Thursday and will be staying until Tuesday I believe.

Alex had been playing non-stop all day. I think Craig said he did take a nap. They all got to sleep through the night on Friday, the longest time they had slept in one stretch for a while. Craig took Alex for a ride in the truck on Saturday and he was excited about that. And Alex brushed his teeth for the first time in about a month. They had not pushed the issue because of the mouth sores. Alex saw Craig brushing his teeth and told Craig he wanted to brush his too.

Craig and Barb are both cautiously optimistic about Alex�s progress. Craig said Alex has a positive disposition and seems to be doing very well at this point. He has been active with good energy levels over the last few days and has even gained some weight. Craig pointed out some things they had changed and were now doing differently from the first round of chemotherapy that seem to be working better for Alex. Alex is taking a different pain medication now (every 12 hours). I mentioned several journal entries ago that they had asked for him to be taken off morphine. The feeding tube is now on a continuous drip instead of 200 cc�s at a time being released into Alex�s stomach (like a full meal). (He can be off of the feeding tube for up to six hours a day). They also changed him from Boost to KidCal supplement which he tolerates well. Alex still has a long way to go, but Craig and Barb are encouraged by the positive things they have seen. He said they are trusting in the Lord to carry them through the days ahead. And have seen His hand in many ways already. They know it is by your continual prayer for them they have been sustained. They continue to be amazed by the way so many people have reached out to them.

Craig also told me all of the people he works with have been really wonderful and are being so supportive of him, Barb and Alex. He mentioned specifically his manager had been very supportive. He said the bank has so kindly agreed to get him a DSL connection and a second phone line put in at home so he can work from home some if necessary. And they gave him a parking pass so he could park in the garage at work (this would be a big expense if Craig and Barb had to pay for it).

If everything goes well they plan to be at home approximately 17 days. Alex has a standing appointment at the Cancer Center on Mondays to get his blood checked. That�s when the doctor checks his CBC (complete blood count). If his counts are low he may have to go back to the Center on Thursday for a blood transfusion but should be able to go back home after the transfusion is completed.

Friday, January 7, 2005 2:11 PM CST

Alex was shooting hoops yesterday as I talked with Barb on the phone. She said he took a 2 hour nap earlier, rode the cozy coup for a while, and played in the playroom. He was a busy boy yesterday. They slept relatively well on Wednesday night.

Alex was supposed to finish the second round of chemo last night around 10:00 p.m. He was scheduled to have blood work done this morning. If the results showed his counts being down a little, Barb said they would give him a transfusion. If they looked ok she said the doctor would probably send them on home. She and Craig must keep a close watch on Alex for fever while at home. If he spikes a fever they will have to come back to the hospital immediately. She said she will have to keep a bag packed just in case.

Barb also mentioned the medicine used in the chemotherapy treatments could cause hearing loss and heart problems. They will monitor Alex for those things for the next 10 years.

Doctors will draw bone marrow from Alex in 2 weeks and check it for tumors. If no tumors are found they will harvest bone marrow for a transplant between the third and fourth chemotherapy treatment. Pray for clear results, that the bone marrow will be free of tumors.

On Monday, Alex will be back at the Cancer Center for more blood work.

Barb had no idea what time they would be going home today, it depends on how the day goes and what Alex�s blood counts look like. I will catch up with her tomorrow to see how they are doing.

Wednesday, January 5, 2005 8:56 PM CST

Alex was re-admitted to the hospital on Monday. He started his second round of chemotherapy Monday night at 10:00 p.m. and will stay on a continuous drip until Thursday night at 10:00 p.m.

Barb said going back was hard after being at home. She said Alex hugged one of the nurses he knew from their first stay when they got up to their floor. He played in the playroom some Monday and Tuesday and rode a hot wheels bike for a while with his IV lines trailing behind in the wind. Go Alex! She said he had a lot of energy over the last few days.

Barb mentioned that Alex had a foley catheter and that it was really causing a lot of discomfort. (The doctor had it inserted so they could monitor Alex�s urine for blood and to monitor his kidney function) She decided to ask the doctor if they would take it out because it was causing Alex so much discomfort and he agreed. Alex seems to be doing much better since they took it out. She said she had been putting cream on the area where the foley had irritated Alex�s skin and he said to her, �Thanks Mom you�re helping me feel better�.

If everything goes well they may go home again late Friday. Doctors will monitor Alex for 24 hours after he is taken off the chemo drip on Thursday night. Wouldn�t it be wonderful if they could go home?

I have to tell you this funny story. Barb told me there is a little girl named Jordan on their floor. Jordan is four and she has leukemia. She says that Jordon wears bikinis. Yes, I said bikinis. She wears them all of the time with tights and pink cowboy boots and wears a leopard skin wrap on her head. So now Alex is wearing a sweatshirt and a diaper while at the hospital. No pants. Not just in his room but out everywhere. I asked Barb why no pants? She said Alex just doesn�t like to wear them. So we have Jordan in her bikinis and Alex sporting a sweatshirt and his diaper up on the second floor. Isn�t that hilarious? I can just picture them both now.

On a more serious note Barb said doctors may start harvesting Alex�s bone marrow soon. Maybe after this chemo treatment. They�ll have to see how the cells look.

Also the doctor at the Cancer Center mentioned to Barb and Craig he thought Alex�s tumor feels softer but not smaller. That is good news! If you�ll remember neuroblastomas are hard tumors. The chemo is making an impact.

She told me they and the doctor feel they are moving in a positive direction. Those were good words to hear.

Tuesday, January 4, 2005 8:48 PM CST

Let's begin this entry with New Years day. I spoke with Barb late in the afternoon, around 4:00 p.m. She said Alex was doing well, had lots of energy and had been playing for four hours straight. They also had taken him off the feeding tube for 4 hours ( I think she said he can be off for up to 6 hours a day). He and Craig's dad played with his trains for quite a while too.

On Friday evening they had a surprise guest! Barb said the doorbell rang and when she opened the door there stood one of their neighbors and with him was Zydrunas Ilgauskas of the Cleveland Cavaliers. Standing at 7 feet 3 inches he had to stoop down to come in the front door. Of course they were all Wowed! He brought a basketball that had been signed by all of the Cavalier players. Not stamped but hand signed. He also gave Alex a pennant and a letter of authenticity that said all the signatures on the ball were real and had been signed by each player. He also brought a t-shirt, key chain and some other items. He also gave Alex a LeBron James bobble head. Barb said those were almost impossible to get and someone told her that shipments of them were literally kept under guard.

Alex also got to have his picture taken with "Z". Barb said he was a little scared so she told him she would stand with him. So they now have a picture of her, Zydrunas and Alex. She told Craig that was their new family portrait. I think she said Craig had gone out for something and he missed the whole thing. What a bummer.

Their neighbor arranged the whole thing for Alex. Barb said he knew one of the Cavalier coaches (I think).

She also said one of the other neighbors brought Alex his own personal DVD player along with some other gifts. (Craig was at the store looking for one when the neighbor came over. So Barb called him to tell him not to buy one. He was leaving the store when she called because they didn�t have any more). Another neighbor gave him a teddy bear and $100.

She continues to be so moved by the outpouring of care and concern for Alex and them. She said, �You never know how many people�s lives you touch�. It�s pretty remarkable.

Wednesday, December 29, 2004 8:08 PM CST

I spoke with Barb briefly this evening around 6:30 p.m. they were packing to go home! I could hear a flurry of activity going on in the background. I think she said Alex came unhooked from his IV or maybe it was just the pole. He was saying to Craig, �Dad get my IV pole.� Bless his heart. She said the doctor didn�t see any reason to have them wait until tomorrow morning to leave so he released them this evening. All of Alex�s blood counts look excellent.

She said her training (on the medical devices) went well yesterday. But she didn�t have time to elaborate.

She was glad to be going home but a little nervous also because of the newness of handling the medical equipment. A nurse will be coming by the house tonight to get them set up on all the equipment. Finally, a break from the hospital room, tests, poking and prodding, doctors, nurses, and bad coffee. (The coffee on their floor was pretty bad Barb said.)

They will be back at the hospital and re-admitted on Monday. She did say they will be at the Cancer Center first and then on the hospital.

Tuesday, December 28, 2004 8:25 PM CST

Alex is going home on Thursday! Yeay. Barb is glad and looking forward to it. The doctor seems to think it will do them all some good because they have been at the hospital so long. They will have to be back on Monday for the second chemotherapy treatment. Alex�s white blood cell count on Monday was 4.6 and today it was 16.4. So it�s looking much better every day.

They are all very tired. Barb said they did not rest very much at all last night Alex was up a lot. And today wasn�t a good day for Alex. Barb couldn�t tell if he felt bad or if the problem was behavioral.

Tomorrow will be a big day for Barb. She has been told she will be in training most of the day learning how to use and care for many of the medical devices they will use at home (feeding tube, broviac, etc.).

They all have been under such strain the last few weeks pray for them that their time at home will give them much needed respite.

Sunday, December 26, 2004 9:26 PM CST

Before I start with today�s update let me give you some information from last Thursday.
The doctor took Alex off morphine. Barb said the dosage had run out at some point during the day. When it happened she noticed a difference in Alex�s attitude. She said after he was off the morphine for a while he was a different child. He played in the playroom for a while and went for a ride in the cozy coup. So she asked the doctor about putting Alex on a different drug to manage his pain. He agreed. She said Alex seemed to be doing better on the new drug.

X-rays/scans (I can�t remember which one) showed a buckle fracture in Alex�s upper left arm. It also showed lesions in his right femur, left leg and right arm. The left side is worse than the right. Lesions are caused by the cancer cells weakening the bone from the inside out. Right now the buckle fracture doesn�t seem to be causing a problem. Alex isn�t favoring it right now. Doctors will continue to keep an eye on it.

Alex wanted to go on a wagon ride so Craig took him down to the end of the hall to a large window to show him the snow. Barb said while they were looking at the snow Craig told her the thought came to him he has not gotten to take Alex sled riding and that he may never get the chance to.

Barb took Alex to the playroom for a while. She noticed some of his hair on top was sticking up so she tried to smooth it down. When she did, it came out. She started to cry. She said without looking up from the toy he was playing with he said to her, �Don�t cry, it�s all right Mom, you�re helping me feel better.� How precious.

One concern she mentioned to me was a purple place that had raised into a blister (on his left leg, I think) she said it looked kind of bad. This area had had tape on it to hold a catheter in place. She did mention the dermatologist had given them some cream to put on it.

Sunday, December 26, 2004
Alex received a ton of gifts for Christmas. Craig and Barb�s pastor�s wife cooked them a full meal and brought it to the hospital on Christmas Day. Thank you Grace for demonstrating the love of Christ in the wonderful way you ministered to Craig, Barb and Craig�s parents in the absence of those of us who would like to be there but are not able to be.

Barb was really tired today. She said Alex was up about every 3 � hours last night. Yesterday and today she said he had a lot of energy. He went for a wagon ride and he was shooting hoops when the doctor came in this morning. She said the doctor was glad to see him up and playing.

Most of Alex�s hair has come out. Barb said he only had a very thin layer left.

Good news��Alex�s white blood cell count was up to 1.4 and the doctor seemed to think he was on an upward climb. Go Alex! If it continues to increase they are looking at starting the next round of chemotherapy on Thursday. They�ll have to see how things go.

Also, Barb mentioned that Craig would be returning to more of a regular work schedule tomorrow (and next week). It�s hard for him to concentrate so lift him up in your prayers for that.

Wednesday, December 22, 2004 8:11 PM CST

When I talked to Barb this afternoon Alex was receiving a transfusion of blood platelets. He still does not have a white blood count. Last night he threw up twice. She said they were able to rest some.

Hospital staff came early this morning to take Alex to get an x-ray (full skeletal). He had to sit still for 15 minutes. Barb said he lost it before they could get done so they had to strap him down. She said it was hard for her to see that. He got so upset he wore himself out and slept through the ultrasound. After the ultrasound she said he perked up and they went to the play room and he played for a while and he also went for a ride in the cozy coup.

Last night Barb left the hospital for the first time since December 6th. They have a friend who works in the NICU and after work she was going by Target. She asked Barb to come along. Craig encouraged her to go (he knows she likes Target). So Barb went with her and was gone for about an hour. She said it was kind of strange to be out.

Earlier today she was helping Alex get re-positioned and accidentally pulled his feeding tube out. They were coming around 4:00 p.m. this afternoon to take him down and put it back in. She was dreading it. They weren�t going to have the benefit of sedation this time. (They don�t normally sedate a patient to do that).

When I talked to her this afternoon she was by herself. She said the roads there were not in good shape due to the bad weather. (She said that�s why no one was there with her). And they are expecting 12 to 18 inches of snow tonight.

Tuesday, December 21, 2004 8:37 PM CST

Barb slept until 9:30 this morning. Craig and Alex slept until 10:00. Yea. Barb did say Alex woke up at 5:00 a.m. asking to go on a wagon wide. Craig was able to get him to go back to sleep though.

A player from the Cleveland Browns Football team was at the hospital today. Alex got his picture taken with him. (I think Craig did too). Barb said several of the Dads on the floor were out walking around with �their� pictures.

Alex did not throw up today. The doctor put the Boost supplement on continual drip through the feeding tube and his stomach seemed to be tolerating it well. White blood cells are still non-existent. Barb said it was something like .1. Platelets and hemoglobin looked fine so he did not get a transfusion today.

The doctor did tell Barb today that if Alex does not get another fever he would be a step ahead of most kids in his situation. You know what I�m going to say next�.. �Pray about that.�

Barb said today she has moments of hope and moments when doesn�t have any. She asked the doctor today to be direct and straight forward with them on Alex�s chances of survival. Basically, do they have any hope? He said if he thought there was no hope he would tell them. He told her they needed to work quickly and aggressively against the disease because it grows so fast.

Barb asked me to convey to each of you who have signed the guestbook that she and Craig have been very touched and overwhelmed by your outpouring of love and kind words for them the last few days. And it really keeps them both going.

Monday, December 20, 2004 9:46 PM CST

Barb said last night was a rough night. She and Craig were up this morning at 3:00 a.m. with Alex throwing up. He threw up several more times through out the day. He did eat a half box of raisin bran around 3:00 this afternoon and was able to keep it down. He has been throwing up a lot of mucus which is produced by the chemo. The hospital also keeps the air very dry (in order to keep germs from breeding) which causes Alex to cough and then coughing leads to throwing up. I think Barb say they were giving him the same medication they use at home in the nebulizer to help with coughing.

Alex seems to be doing ok with the feeding tube. He�s eating some, but not enough. He needs to eat more to build up his strength. He still has the mouth sores. But Barb said they were not as bad as they could be. I was encouraged to hear that.

Alex received another blood transfusion today. He still does not have any white blood cells. He may receive a transfusion of platelets tomorrow.

Barb also said the doctor told them that all of the things Alex is experiencing are normal for the severity of the disease and the level of chemotherapy he received.

They also spoke with a psychologist today who recommended they establish a behavior plan for Alex. He has been hitting Craig and Barb. So the psychologist told them they needed to let him know that behavior was not acceptable even though he is sick. Barb said talking to her was helpful and they did start working with Alex on that today and it seemed to be helping some what.

They still have not received results back from the bone scans. (Tomorrow maybe, let�s pray for good news). I asked if doctors had given them any news about the effect chemo had had on the tumor (the size). She said the tumor size probably wouldn�t be affected until after about 3 chemo cycles. She did say that blood work revealed significant cell destruction. (Good news!)

I almost forgot�..the next cycle of chemo is scheduled for December 30. However, doctors will not start the next cycle unless Alex gains some white bloods cells. Barb said it actually depends on the CBC (Complete Blood Count) so they will be looking at other counts as well.

Craig returned to work today and worked from 9:00 to 2:00. It must have been so hard for him. I�m sure he had a tough time concentrating. Pray for him as he works the modified schedule and then goes back to the hospital each day. Hang in there Craig. Psalm 71:16
�I will go in the strength of the Lord God�..�

Of course, today was the first time Barb has been at the hospital alone. Not easy. She and Craig have been such a tag team. What wonderful and loving parents God has given you Alex.

Sunday, December 19, 2004 4:40 PM CST

Alex received another transfusion of blood platelets today because he does not have any white blood cells at all. His count should be somewhere in the thousands and it is 0. (From what I understand Alex has no immune system at all at this point.)

The doctor did go ahead and insert the feeding tube back into Alex�s nose today. They taped socks on his hand�s to keep him from pulling it out. When I talked with Barb he was still groggy from the sedation. I asked her how long they were going to leave the tube in she said until the doctor said it could come out. They want Alex to build his strength back up.

One positive note��Barb said they were able to sleep most of the night.

Craig�s parents arrived yesterday and will be staying most of the week.

Doctors also told Craig and Barb to plan on celebrating Christmas there at the hospital because they wouldn�t be able to go home.

Saturday, December 18, 2004 5:32 PM CST

Friday, 9:30 p.m.
Thursday Alex had a fever over night. So the doctor quarantined him to his room for 24 hours. They were able to sleep some during the night even though Alex was restless. He did eat frosted flakes for breakfast, lunch and dinner. Barb and Craig were trying to get Alex to drink some Boost when I talked to her. The doctor wanted him to start drinking it to stay hydrated (due to the fever) and for the extra calories. But Alex doesn�t like it and was refusing to drink it.

Saturday 5:00 p.m.
Alex was up every hour last night. He also had to have another blood transfusion today. Barb said Alex was bleeding into the tumor because of where it was located and there were blood veins going into the tumor. He also needed the transfusion because his hemoglobin is still low.

They also saw one of their oncologists today and he told Craig and Barb they were going to try and manage Alex�s pain level a little better (for mouth the sores and couple of other things). So Alex is now receiving morphine every 4 hours which seems to be helping. Barb said when the morphine wears off Alex becomes belligerent.

Alex did actually drink some vanilla Boost today so that is encouraging. He needs to drink a lot more to get the extra calories to build up his strength. The doctor keeps talking about putting the feeding tube back in Alex�s nose. This has been a big dilemma for them, because they know as soon as the tube goes back in Alex will rip it right back out. He really needs to drink the Boost to keep from getting the feeding tube.

They have not gotten the results back from the bone scans that were done Weds. and Thurs.

Barb is frustrated and discouraged today largely because of this issue with the feeding tube. It�s a problem they really don�t know how to handle and that issue alone is adding an extra measure of stress.

They have been told they are not going home anytime soon and the feeding tube issue is a big part of that.

Thursday, December 16, 2004 7:38 PM CST

Today has been a very difficult day for Craig, Barb and Alex. Alex has been extremely agitated since last night. He was up a lot and Barb said he pitched a really big fit on them last night. Doctors have tried a couple of different meds hoping one or the other would help to calm him. Ativan was the last thing they had given him today when I talked to Barb she said it really wasn�t helping much. As a matter of fact, they had given him double the dosage he would normally get for his weight. From what she and Craig told me this is not abnormal and it goes along with the chemotherapy. Staff also told them being at the hospital and Alex not being at home in his normal environment was contributing to his agitation. Craig is the only person Alex will allow to hold him at this point. They are both completely exhausted; she said they couldn�t even think straight anymore.

They�ve also had other set backs today. White blood cell count for a healthy person is 4500 to 10,000. Alex�s is only 100. He did receive a transfusion of blood platelets today to help with that. With his count so low, the doctor decided they should stay at the hospital a couple of days longer. They were told if they went home they would most likely be back at the hospital in a matter of hours. Because Alex would probably begin to run a temperature (they consider a temperature 100.4). So they would be right back to the hospital which would make it even more difficult for Alex after being at home for a while.

Doctors also put in the feeding tube today. They put it in while Alex was sedated for his bone scan. They thought it would be easiest to do it then. Craig said when he woke up and realized it was in (his nose) he immediately ripped it out. He (Craig) asked the doctor to hold off on putting it back in until they could get Alex to calm down a little more. So they�ll try again later.

They all need some respite. Pray the Father would grant that tonight so they can get some much needed rest.

Wednesday, December 15, 2004 8:57 PM CST

I just got off the phone with Barb (9:00 p.m.). Alex was up most of last night (Tues.) crying because he has developed sores in his mouth caused by the chemo. (She said this was very common with chemo patients). With sores in his mouth he of course is having difficulty eating. He was able to eat some macaroni and cheese for dinner and Craig was feeding him ice cream while I was talking to Barb. The doctor recommended putting in a feeding tube and leaving it in until the sores heal. Craig and Barb wanted to try and find some things Alex might be able to eat before making that decision. So the doctor agreed to wait until tomorrow. Chances he will get the feeding tube tomorrow are 50/50. Let�s pray the sores will heal quickly so Alex doesn�t have to get the tube.

He was also receiving a blood transfusion as I was on the phone with Barb. The transfusion should raise his hemoglobin which is pretty low right now. Low hemoglobin can cause him to be anemic. Tomorrow he may possibly receive blood platelets as well. They�ll have to see how things look.

They may be back at the hospital on December 30th for the next round of chemotherapy. It depends on how Alex�s blood counts look. If counts look good they will go ahead with the chemo, if counts are too low they will wait longer and start the next round later after they have come back up.

Right now they face many obstacles and Barb said things seem to keep piling up. Alex wants to go home Barb said he had been asking to go. Pray that no obstacles would be added to their path and that Alex�s request would be granted.

Tuesday, December 14, 2004 9:35 PM CST

Alex is doing well today. He was up at 7:00 a.m. and ate almost all of a small box of Frosted Flakes. His energy level was up, he was laughing and playing, talking a lot and even being silly. Barb said he was very sweet today. He shot some hoops and went downstairs for a wagon ride and watched a video on trains that Craig�s uncle made special for him. (Actually, Craig and Barb coaxed him to go on the wagon ride by letting him watch the video on the laptop in the wagon.)

Friends from church came to visit this evening and insisted Craig and Barb go to the cafeteria for something to eat. So they did (reluctantly). Their friends helped Alex with dinner, he did eat and drink for them. (Way to go Alex!)

I asked Barb how she and Craig had helped Alex to understand what was happening to him. She said the hospital gave him a doll that had a central line just like his. That helped with explaining the central line. Also a friend had given them a book written by the guy that invented penicillin. The book has a cartoon type story with soldiers in it that they used to explain to Alex he has an enemy in his tummy that is not supposed to be there. And the doctors are sending in �good soldiers� through the central line to get rid of the enemy. She said Alex said, �Yeah� when they talked about the �good soldiers� so he does have some understanding about what is happening.

He will go Wednesday and Thursday at 3:00 p.m. for bone scans. They may get results back from those Thursday night.

There was also a small spike in Alex�s temperature this evening. They will be monitoring that very closely the next few hours.

Today Barb cleaned Alex�s Broviac(central line) for the first time. (I think she said it was her first time). She cleaned it while the nurse watched. It went well. It sounded complicated, but she did it with no problem.

She said there were a couple of times during the day today when all of this became very real to her. And it was hard to keep herself together. I can not imagine. They�ve been told they may be going home by the weekend, and that�s very scary to her. She said, �Going home won�t be the same, my child has cancer.� No going back into the old routine. They will be going back home to the same house, but nothing else is the same. What will the days ahead bring? Everything is so new and different for them.

Craig will be returning to work next week. Pray for him while he�s trying to work, because I know his heart will be at home. Barb�s sister Sue (and her husband, I think) had come last week to help out. She may be staying with them a few days after they get home.

Sunday, December 12, 2004 10:03 PM CST

Hello everyone, I talked to Barb tonight (Sun.) around 8:00 p.m. Alex will be finishing his first round of chemo tonight. He has been receiving a continuous drip (since Thursday night) through the central line that was inserted last week. He is doing ok for now. Barb says he has been up some, but has slept a lot over the last few days. He ate a few pretzels and had some juice this evening but wasn�t able to keep any of it down. Craig was lying in bed with him when I called. She said Alex had wanted his dad constantly the last few days.

There are no tests on the schedule for Monday. Tuesday, Wednesday and Thursday Alex will undergo bone scans to see what effect chemo has had on the cancer cells in his arms and legs. If chemo has not begun to kill the cells, they may start radiation treatment. This would also be done through continuous drip into the central line. Barb said they would be going day-by-day next week. Doctors will make decisions based on what they see on the scans.

On the note of doctors, she mentioned they have a wonderful oncologist. Who just happens to have a three year old son. So he talks to Alex about Thomas the train and he knows all the train names because his son likes Thomas too. We know that�s a God thing. She said he is very caring and has been wonderful to them.

Some of her family had visited today so she was tired. She told me felt peaceful, no anxiety for now. Many friends have told her of their constant prayers. And she knows it is those prayers that are sustaining her, Craig and Alex. Praise God for that.

She has begun to see God moving in their family also. One family member said he thought God was trying to tell their family something. Another one spoke to Barb on the phone and was crying hysterically. Barb comforted her by reading her some scriptures. Did you catch that? Barb comforted her.

In closing, I did want to mention Craig will be off work all next week, but will try to return the following week on a modified schedule. This won�t be easy for him, so pray for him.

Saturday, December 11, 2004 12:49 AM CST

I spoke with Barb Friday morning around 10:00 a.m. I was so glad to hear from her. Her voice was strong today. She said she could feel that people were praying for them. She said Craig was doing �ok�. They had been looking at pictures which was very emotional for them.

She said Alex�s bone scan did reveal cancer has advanced to his bones, news they did not want to hear. Chemotherapy began Thursday night at 10:30 p.m. I asked her about chemo, if the doctors were planning to shrink the tumor to a smaller size and then remove it surgically. She said maybe, but the surgery was risky because of where the tumor was located. As for the tumors in Alex�s bones she said they may look at radiation later to treat them.

They were all very tired. Alex had been able to sleep through the night. He had soup, a roll and a popsicle for dinner Thursday, she said he hadn�t eaten that well in a while. He also sat up in bed played with his trains and entertained guests who were visiting.

No tests were on the schedule for Friday. They were planning to take it easy and rest as much as possible for the day.

Wednesday, December 8, 2004 8:47 PM CST

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